MSA Comments

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237 Responses to MSA Comments

  1. Karen Staggs says:

    If there’s any one that has MSA and an ostomy is any one dealing with diarrhea or abdominal pain. Is there anyone out there that has breast cancer had chemo or radiation pls contact me

  2. Ray says:

    My grandpa had msa and has terrible leg pain and can’t sleep at night. He has to walk around all. Ugh tell and I just cry for him. Any home remedies to help with this? He is taking medication but it stops working after a while.

  3. Georgia Martin (http://Nowebsite) says:

    Hi Brooke,
    I have not received a diagnosis yet-next neuro appointment in early feb. I now have jaw stiffness and balance issues so I’m thinking its a certainty which is terrifying for anyone, particularly when I have 2 small children. Sorry you are experiencing these symptoms. How are you going diagnosis wise?
    Take care

    Georgia

  4. Karen says:

    Hi Kim,
    So sorry to hear of your husband’s trouble. My husband too has MSA-P. He has no pain in his legs but horrible “spasm pain” in his lower back. Have the doctors tried anything for your husband’s pain? It too has taken over his life. It is worse when he moves. Has anything helped? My husband has has injections, Botox, multiple medications and just recently had a Baclofen pump inserted. He did well with the trial but the Baclofen pump is not working like we all hoped it would. Damn disease!!!!

  5. vicky says:

    Hi my 18 yearold son has was diagnosed a year ago with olivopontocerebellar degeneration known as msa. He does alot of gasping to get air. He takes tranquil sleep pills sold in health food store to get a proper nights rest. N has gastroparesis w tremor on right side n low blood pressure. Naturopathic docs help more then his neurologist

  6. vicky says:

    Hi everyone! I feel for everyone out there with msa. Iam a mom and a caregiver to a 18 yearold son. Theres not one day i dont shed tears for my son that i see suffering every day. He had a brain tumor at age 3 removed w no chemo n no radiation. His left side was affected had to terach him to walk sit n crawl all over again. Over the years he got better but i noticed about grade 6 his right side started weaking tremor in his right hand always fatigue low blood pressure. He had a stroke a year ago after exercising. But then was diagnosed w olivopontocerebellar degeneration. Known as msa. Hes finishing his last year if school is always in pain stiff muscles very tired mood swings are horrible. His digestion is very poor did all kinds of tests on stomach cant find anything. He cant eat as he wishes does alot of gasping for air body leans to the right n has leg n back pain. Anyone out there with this disease at such a young age? Doctors r no help. They just ssy look it up on cimputer. My son does not know what disease he has keeping it from him so he doesnt fall into a deeper depression.

  7. Katherine says:

    Hi Brooke. Are you taking midodrine for your orthostatic hypotension? It can cause muscle twitching which looks remarkably like a movement disorder in a rare number of patients. It happened to me, and resolved soon after I stopped taking it.

  8. Kim says:

    I’m so sorry about your sister Pat. It seems like she went very quickly. My husband was diagnosed 8 months ago and appears to be progressing pretty quickly also. We have seen 3 doctors and they all refer to the disease as being ‘wicked’. It scares me to think of what my husband and I will be going through.

  9. Brooke says:

    Did you ever receive a diagnosis? I am 40 with very similar symptoms. My only diagnoses are neurocardiogenic syncope, Orthostatic Hypotension, and idiopathic autonomic neuropathy. My symptoms started at 38. I recently started having symptoms of a movement disorder. My doctors seem to think that I am much too young for MSA but don’t know what is causing all of my symptoms.

  10. Aleksandra says:

    Hi , if there is anyone with young adult onset of msa please contact me. I’m 31 with symptoms starting at 28, I have a probable diagnosis but living with this nightmare for 3 years now makes me sure what I’m dealing with. My email address: aleksandra8walter@gmail.com (aleksandra8walter null@null gmail NULL.com)

  11. Surfcoastwombat says:

    Hi Katherine

    Patricia never had any bleeding problems of any sort during her illness.

    Regards
    JC

  12. Katherine says:

    Hello,

    My mother has quite advanced MSA P
    Did Patricia every have alot of bleeding from the bowel?

  13. Christina Carter says:

    My husband is about to turn 45 and was diagnosed with MSA about a year and a half ago. He’s still able to work, but I can see the changes happen slowly – some stay, some seem to be temporary. I am slowly but surely taking over a lot of the tasks he used to handle. This disease scares the heck out of both of us. I have avoided reading up on it for that reason. But now, I want to be informed so that we can fight it together to the best of our abilities. God bless all of you out there fighting.

  14. pat pigdon says:

    I recently lost my 63 year old sister to MSA. Such a cruel disease. She was diagnosed 5 years ago with Parkinsons but medication did nothing to help her. She had to wear a head band attached to the back of the chair to hold her head up. Very degrading. She was placed in a nursing home a few months ago because the carers couldn’t even lift her to the shower. She deteriorated rapidly in the nursing home and it was like she was trapped in her own body with limited movement if any. I tell myself she is in a better place now with no more pain. I just wish there was some better treatment available for sufferers.

  15. Pernilla says:

    Michael, is there anyway I could get in contact with you?
    My dad suffers from MSA-C and seems to have the same mindset as you do. Maybe we can help eachother?

    Kind Regards,

    Pernilla (f.pernilla@gmail.com)

  16. kathy fahey (http://none) says:

    hi edna, my hubby has msa -c has had it since 2007 ,its a very cruel disease i have been his carer for that time, he has all what you mentioned speech, incotenance ,chocking , breathing problems and the sleep apnea plus a few other things there doesnt seem to be much research for it which saddens me,
    im dreading the day i have to make the desicion to put him into care it must be a difficult time for you , i wish you all the best kathy

  17. Phoebe Harrison says:

    Martha, and anyone this info may help,
    Baden was diagnosed 7 years ago. We managed very well until feb when he was diagnosed with lung tumor.
    As for the dropping BP you may like to try a salt sole. It is simply water saturated with Himalayan pink salt. One teaspoon in a glass of water in the morning. Baden’s BP has been stable for quite some time now. It is simple to take, won’t do any harm and may help so worth a try. The pills from GP did nothing.
    Just google salt sole. Good luck.
    Phoebe

  18. Kim says:

    I have heard of too many MSA patients having leg & back pain. MSA is a loss of function and death of different types of nerve cells in the brain and spinal cord. It only makes sense that if it affects the spinal cord, the patients would have back and leg pain. The neurologists need to listen to patients and realize there is definitely a connection between MSA & back/leg pain.

  19. Kim says:

    Julie, I am so sorry to hear your story. All to familiar. And very scary for the patient and for us care takers. I am finding more and more patients with leg and back pain. My husband is getting cortisone shots in his spine but they have not helped. He gasps a lot now. I can see him progressing very quickly. Sounds like your husband is progressing even faster. Keeping you in my prayers.

  20. Julie says:

    My husband turned 50 in January & was diagnosed in March with MSA-C. He was initially diagnosed with Parkinson’s in 2013. He suffers with back & leg/foot pain on his right side. The pain is taking over his life also. His neurologist has told us it’s not from MSA. No one seems to have any answers to why this is happening.
    He has gait in his walk, & is finding it more & more difficult to do anything with his right hand.
    He is booked into hospital next week to have a Supapubic Cathether inserted. He has developed breathing problems & often has choking episodes at night. He has disrupted sleep most nights, acting out nightmares, talking in his sleep etc.
    Julie

  21. Edna Perkins says:

    My husband, age 77, was diagnosed in 2010. I am so happy to have found this site after five years of reading everything I could find on MSA-P and vascular dementia. I believe he has had it since before his diagnosis as he started having TIAs in the ’90s, strokes in 2006, and the side effects I was observing and thinking from his strokes were probably the onset of MSA. He has experienced most everything all others are mentioning. He is a career officer in the US Army and spent two years in Viet Nam and most certain was in areas exposed to Agent Orange. The VA does not recognize MSA as an Agent Orange disease. He is 20 years older than I. I kept him home with a caregiver for three years and finally entered him into a nursing facility. The falls, choking, blood pressure, sleep apnea, soft and mumbled speech patterns, his eyes are very sensitive to bright light, incontinence, and even the hiccups are what he experiences. When he learned of his diagnosis, he contacted NIH in Bethesda and volunteered for a week long research project for PD/MSA patients. My research now is to find more information regarding the end stages.

  22. Vera James (http://www NULL.multiplesystematrophy NULL.org) says:

    Bronwyn , there is a facebook page set up just for Australia/NZ. They have an area for files. If you look in that you will find a link that has a list of doctor’s who know MSA for both Australia & NZ. The fb page is https://www.facebook.com/groups/MSAOZNZ/ (https://www NULL.facebook NULL.com/groups/MSAOZNZ/) .

  23. Bronwyn says:

    Hello everyone, My partner has just been diagnosed with MSA-C. This has taken 6 months to date with multiple blood tests, lumbar puncture , 3 x MRI brains, pet scan and the list continues. He is still currently in hospital in Perth, WA, Australia. He turned 50 in April this year. We first noticed symptoms about Sept 2014- but he has rapidly gone downhill… speech difficulties have become worse with associated swallowing difficulties, clumsiness has progressed to difficulty in walking and especially stairs and lifting his legs, more frequent urinary problems, night sweats, temperatures, coughing and what I call REM of the body during sleep, His arms, legs flail and he speaks but you can’t make out what he is saying. I have to wake him to stop them and then he settles back down for a while. I am not quite sure what my post will achieve but if it helps/assist another person then I feel we have helped. He also has severe lymphedema of one leg from the knee down. Could this relate to the side of the brain more affected – no one can tell us. The headaches have also started. Panamax seems to be the only drug that offers relief to the “dizzy’ feeling, the headaches, the sweats and temperature. The hospital want to take him off it in case it is masking other symptoms but my thought is “what the hell” if something works and they are not offering any other treatment/ no treatment & or other drugs why not take something to makes life that little bit more comfortable and bearable. Like everyone one else we seem to come up to a brick wall with respect to “experts” in this field of neurology. I would be very interested in any specialists or recommendations for specialists in Queensland, as that is where will be be moving back to in the near future. I have tried to obtain yardsticks as to what to expect in the future but the alas the answer is the same… different rates of degeneration for different people. All and advice will be gratefully accepted. Bronwyn

  24. Debbie Templeton says:

    Hi Kim,

    My hubby 43 was diagnosed last year and has most of what you are talking about. I am truly sorry to hear you are also going through this horrendous illness. Fatigue, hip pain and coat hanger pain is very bad all the time. Ian can not walk properly either. His right side is very bad and his left side is going now to.
    Debbie

  25. Lorena Wong says:

    My dad is diagnosed with MSA back in 2008. He is pretty much bed bound now. But he doesn’t have any pain at all. Occassionaly he has complained that his back has some kind of discomfort but I am sure it has to do with his laying on one position of a long time. Hope this helps. Thanks Lorena

  26. Kim says:

    My husband was diagnosed with MSA about 6 months ago. They first diagnosed him with a stroke, then upon seeing other neurologists and a lot of tests, it was determined that he has MSA. One side of his body is affected more than the other. He has gait in his walk, has trouble with mostly one hand, drools, sweats a lot more, etc. But he also has moving pain in his back and legs. This pain is taking over his life. The neurologist said this pain isn’t from MSA. Have your loved one’s had pain in the back and legs too? Is this pretty common?

  27. Gin says:

    There is a doctor in Waukesha, Wi. My grandmother was diagnosed with it right before passing in 1998. Prayers to your family.

  28. Brigitte says:

    I read about you wanting to try stem cell therapy. Did you go ahead with the procedure? If so, how do you feel from it? I’m trying to look into this for my mom who has MSA. Thank you.

  29. Martha Duke says:

    My husband has been dx with msa by his cardiologist based primarily on low and erratic blood pressure. There are other parkinsonian symptoms, and he has an apt with neurologist in a week. I have been reading about it online, but not until I read your blog did it become real.
    And terrifying. What a horrible way to live/die. Most importantly, though, it made me realize we need to make plans and do some serious thinking, if this dx is confirmed. Thank you so much for your efforts to help others.

  30. John Cummings says:

    I’m not aware of any MSA – Lyme disease studies here in Australia – but that doesn’t mean there haven’t been any. Maybe some of the Australian contributors may have some idea.

  31. Kimberley says:

    Sorry if this question is not posted in the right place?
    Just wonder if there is any study/info in Australia regarding the link between MSA and Lyme-Disease? Working with a friend/patient here in California who has MSA after Lyme and certain it is connected. Only seen a couple studies on the web but wonder what any of you have seen/heard experienced in AUS?
    Thanks so much for your time.

  32. John Cummings says:

    Michael

    I gave careful consideration before approving your post below. Let me explain. As far as I know, my MSA web site and the information contained therein is the only private web site available – all other similar web sites belong to organisations. My web site attracts hit from all over the world daily. I am 74 and not enjoying the best of health myself and could quite easily retire this site and leave the issue of promoting MSA to others. I personally do not have the time or energy to do anything other than keep this site running.

    I have enormous sympathy with what you are going through and how you must feel. Although I do not have MSA myself, I was the Carer for Patricia for many years. We both suffered in our different ways and 11 years after Patricia’s passing, I am still suffering to a degree. Watching her deteriorate so slowly was awful.

    I must say that when Patricia was first diagnosed with MSA-P, I asked her Melbourne based neurologist for a second opinion. He had no problem with that and we ended up getting three further opinions and all were carried out within a few weeks. One of the other neurologists was also a genetics expert. We discussed the findings with her primary neurologist and saw no reason to change doctors. This neurologist kept us as informed as he could with all developments that he was aware of including attempts to discover what was causing MSA. Sadly – still nobody knows but believe me people are trying.

    I am not able to carry out or initiate any such surveys. But there was one such done in 2014 and you can see the report here. I have no doubt that other surveys are being done or considered but I am not aware of them.

  33. Michael Chahine says:

    Hi

    I wish/want to conduct a survey of MSA-C sufferers only. I have been diagnosed with this condition which does not make me all that happy. The doctor professor is only 60% and wants me to obtain a second opinion. Can you believe that the “second opinion” is not until May 2015. There apparently is “no cure” and there is no 100% diagnosis (wait until you die seems the only way to determine this illness) beyond reasonable doubt.

    The idea behind the survey is to gather information that may provide some discernible info for possible treatments and or cures. The areas that one could examine??

    Lifestyle
    Diet
    Location of dwelling – amount of air pollution and toxins in the area
    Medicines used or taken …………besides MSA treatments
    Exercise and sports activities
    Doctors in Sydney because of the excessive workloads cannot see me until May. The appointments I have had over these past 2 years have had a period of roughly 6 months.

    So I am here in Northern Thailand having daily easy to access reasonably priced treatments until end March.
    Hydro treatment with therapist A$20, without therapist use of heated hospital pool $4
    Acupuncture $10-20 per treatment
    Foot spa detox $22
    Full body therapeutic massage. 1 hour $12 including tip
    Head shoulder back and neck 1 hour $12-14
    Colon cleans $35
    There are many more treatments that are available here in Chiangmai
    My diet is healthy organic mostly vegetarian – pesticide free.

    I want to overcome this disease and will try anything,

    The survey might help me and other sufferers to finding some respite from this outrageous frustrating illness.
    I hope that you can help with this concept John??
    It has more than likely already been done??
    Thank you – I really do hope that I hear from you/someone.

    Kind regards
    Michael Chahine

  34. julie johnson says:

    From what I understand it is those medications that cause the hallucinations. My dad was on those meds to rule out Parkinson’s.

  35. Georgia Martin (http://Nowebsite) says:

    Also Karen, has your sister had any luck with medication for frequent urination?

    Thanks again,

    Georgia

  36. Georgia Martin (http://Nowebsite) says:

    Hi Karen, thanks so much for your reply. I also do not have the movement issues yet but I have only had symptoms for roughly 9 months. It sounds as though you are being very supportive of your sister which I’m sure is a huge help for her. Let me know how you go with David Williams-I hear he is the guy to go to about MSA and I am contemplating asking for a referral to him instead of another neurologist I am seeing in a few months.
    Take care,
    Georgia

  37. Karen says:

    Hi Georgina
    I should have replied to you earlier and sorry that it was delayed for long. My sister is only 40 and she has been tentatively diagnosed with MSA. We are still unsure whether it’s indeed MSA or a pure autonomic nervous disorder as she has very minor movement problems and her dizziness and urination problems have been going on for many years. She fainted a few times recently and the blood pressure remains very bad. We are going to see Dr David Williams in Melbourne. Hope that he’s good.

  38. Barbara says:

    My 73 yr old hubby was diagnosed with MSA-C 2 months ago. But as time has gone on his specialist has changed the diagnosis to Idiopathic Cerebellar Degeneration. I would like to hear from people that have this condition and has anyone tried TMS Therapy for this condition(Transcranial Magnetic Stimulation.)
    Regards,
    Barbara

  39. Terry says:

    I hope you find the best medicine for the needs

  40. kathy fahey (http://none) says:

    thankyou terri i will check with our doctor and see if kerry can try the gabapentin and someone else mentions baclofen we will try anything at this stage i feel they have enough to deal with without the hiccups as well ,all the best to you both kathy

  41. Lisa says:

    Hello Kathy

    I get hiccough occasionally. I am wondering if your hubands hiccoughs are actually burping related to gastric reflux, which I get a lot of – just another anutonomic nervous system malfunction. Get your husband to see his doctor about getting some Nexium for gastric reflux, it may take some weeks to really start working but it does work.. Nexium is know as a ‘proton pump inhibitor’. Proton pumps are the cells in the stomach that produce stomach acid – Nexium reduces the production of stomach acid.
    Please tell your husband not to worry about loud burping in public, we have enough to worry about. Just burp say “Excuse me” and carry on – there are far worse habits performed by some people on purpose.

    Yours
    Lisa

  42. Terri Robertson says:

    I have a pacemaker, and some adjustment was made to reduce the hiccuping.

  43. Terri says:

    Hi Kathy,
    My husband has MSA-P and has the same hiccup issue. One time they lasted continuously for several days. He was exhausted and we tried everything to stop them. The meds that would normally stop them also lower blood pressure and his is already low so we couldn’t chance it. His neurologist tried him on Gabapentin and it stopped them! This is not normally used for hiccups but he thought it was worth trying and it worked! He did not stay on it but we might discuss it at the next visit since he is embarrassed and doesn’t want to go out.

  44. Georgia Martin (http://Nowebsite) says:

    Hi Karen,
    I am 36 and relate to your sister’s symptoms. I am not diagnosed but suspect MSA. I was wondering if your sister takes anything for frequent urination as this symptom really bothers me at the moment? Also, what were her first symptoms and at what age? I fear that being so young no one will take me seriously and I have already been seeing doctors about my symptoms for a year now.
    Hoping you are coping and wishing you all the best in the coming year. What a great sister you are!

    Thanks,
    Georgia

  45. John Cummings says:

    Hi Linda – my wife never had a trach because although she had trouble swallowing, and she did have some stridor, she didn’t have trouble breathing.

  46. Linda says:

    Thank you John for this website. Finding useful information in one spot is so helpful. We are five years into my 56 year old husband’s MSA, incorrectly diagnosed as PD of course. We live in the states in Wisconsin. We haven’t found any doctors here that have actually heard of MSA. We go to specialists in the Chicago area.

    I’m wondering if your wife had ever gotten a trach and it not, why not? My husband has bilateral vocal cord paralysis with severe stridor. In September he had a life saving surgery on the vocal cords (a keyhole opening at the top to allow more air through) and a trach for an emergency backdoor. The stridor went away and breathing improved. He has since pulled the trach and the stridor is returning with breathing issues coming back. Funny though as the trach was always plugged. The trach did allow him to clear the mucous from his throat through the trach and since he pulled it, he can’t clear his throat as well. We are going to have to get another trach soon. Things continue to progress and your website has given me great insight as to whats to come and things we need to consider and plan for. Thank you again.

    Linda

  47. Paul says:

    Hi John, thanks for the website. I’ve only looked at a bit of it rather hurriedly just now but hope to revisit it at some point in the future.

    Sorry to hear that you lost your wife to MSA.

    I lost my mum to it in 2010, aged 78. It was a rather rapid decline in the end (over 3-4 years) but the signs were quite a bit earlier, in hindsight. They diagnosed Parkinson’s – after initially diagnosing mild strokes, that impacted upon her balance, she had a fall or two prior.

    It was a very sad way to see her lose the ability to do the very things that gave her purpose – cooking for people, writing them cards and other such things.

    In the end I was somewhat relieved that she didn’t have to live in the unresponsive shell she ended up living in. I suspect that, even though she made approached her difficulties with a good deal of positivity, she was pleased that her increasingly difficult life had ended. She had experienced a lot of emotional pain during the years immediately prior to dying – the loss of my sister and father.

    Anyway, thanks again for sharing your story… and Patricia’s and for the large amount of research you’ve done.
    Regards,
    Paul

  48. Helen says:

    Thank You! I appreciate any info I can get.

  49. John Cummings says:

    Hi Helen – in reply to your comment of 8 December which was in reply to Debbie Templeton’s comment of 10 October – I am not keeping abreast with the latest medications for MSA but I do remember that as well as being prescribed Levadopa (Sinemet), Patricia was also given Parlodel (Bromocriptine) and I remember the Neurologist telling me that Patricia’s mild Obsessive Compulsive Disorder (OCD) would be made worse – and it was. She initially suffered a high level of paranoia until the medication dosage was sorted out. I will forward your query on to the MSA group in the US where there is a lot more expertise on line.

  50. Helen says:

    I haven’t seen anyone mention symptoms such as extreme paranoia and hallucinations. My mother in law was recently diagnosed after initially being diagnosed having Parkinson’s almost 3 years ago. She’s been on Levodopa and Carbidopa. Has anyone who has MSA been prescribed these medications? Is anyone experiencing these side effects mentioned? What medical treatments are being used if not these meds? Any info would be greatly appreciated. Thank You

  51. Lorena says:

    Hi

    My dad has been complaining dizziness on his forehead for a long time. 2008 his neurologist told us that he probably has msa. Any ideas where we can get more confirmed diagnosis . We live in Alberta, Canada. Thanks

  52. kathy fahey (http://none) says:

    Hi Lisa ,
    i wonder if perhaps you could answer my question,my hubby has msa-c has had it for 7 years now suffers all the problems but he also has these terrible hiccups constantly ,
    after he eats and drinks is worse but it happens all the time its so annoying and now he is not wanting to go out in public because they are so loud he is embarrased. we have asks the doctor ,speech pathologist any one we can but all anyone says is its the msa ,but i have asked many msa sufferers and no one seems to suffer with them they cough but thats all, he cough a lot also .have you come accross this complaint.
    i wish you all the best
    kathy

  53. Georgia Martin (http://Nowebsite) says:

    Also wondering if there are many patients on here in their 30’s?Feeling very young and alone. I should add that I haven’t been formally diagnosed yet but seem to identify with most of the symptoms.
    Thanks again.

  54. Georgia Martin (http://Nowebsite) says:

    Thanks for your reply John. I’m in Macedon just out of Melbourne. I appreciate the links to the Facebook page etc and will definitely check them out.
    Thanks again

  55. John Cummings says:

    Hi Georgia

    Whereabouts are you in Australia? There are plenty of Neurologists that are up to date with MSA but it depends where you live. You might find it of interest to go to the Australian MSA Facebook page at https://www.facebook.com/#!/groups/MSAOZNZ/ (https://www NULL.facebook NULL.com/#!/groups/MSAOZNZ/) .

    If you are in Victoria, the Bethlehem Hospital is a good place to contact – also the Parkinson Victoria group http://www.parkinsonsvic.gov.au (http://www NULL.parkinsonsvic NULL.gov NULL.au) is involved with MSA & other related illnesses and maybe able to give you pamphlets on the disorder or may know of support meetings where the patients attend with MSA.

    Regards
    JC

  56. Georgia Martin (http://Nowebsite) says:

    Hi all,
    I have been reading posts on this page for sometime and am constantly amazed by strength and courage you all show each and every day. I am a 36 year old female with 2 small children and a wonderful husband. Over the past 8 months I have developed chronic constipation, gastroparesis, mild OH and now urinary frequency. I am wondering if there is a neurologist in Melbourne , Sustralia that specialises in MSA as it seems a few of you had problems with various doctors recognising the disease.
    Thanks for taking the time to read,
    Georgia

  57. Louise says:

    Phoebe, we are about to begin all the treatments you’ve listed below for my mum including Walhs Protocol.
    Is everything still going well for Baden?
    Do you have an update? Any further recommendations?

  58. Louise says:

    Have you looked into Lyme Disease?

  59. Louise says:

    Andrew, did your father start the Wahls protocol? We’re about to start it with my mum who has MSA.

    Anyone else have any feedback on this?

  60. Lisa says:

    Shortness of breath and sleep apnea are related to MSA. The vagus is deteriorating, this cranial nerve works the lungs and heart. sleep apnea occurs because the musculature in the air pasages are becoming lax – weakening. A C-pap machine would benefit. http://en.wikipedia.org/wiki/Positive_airway_pressure (http://en NULL.wikipedia NULL.org/wiki/Positive_airway_pressure)

    49 years old with MSA (c).

  61. Lisa says:

    The balance issues being addressed by these exercises are related to vertigo caused by deterioration of some cranial nerves. These exercises are strengthening the muscles which move the eye balls to prevent nystagmus.

    Exercises which help with cerebellar balance issues are about building up the muscles of the inner core, the abdominal muscles, the plevic floor muscles , the muscles in the buttocks and the inner and outer upper thighs.

    I am 49 years of age with Multiple System Atrophy (cerebellar type). Former othopaedic trained nurse.

  62. Karen says:

    Hi Michael
    How are you? I think you are the person who called me the other day about my sister. Hope that you are improving.
    My sister is doing ok. She is trying the Chinese medical treatments which haven’t shown much help, and I’ll consult a nature therapist soon about the treatments here. She is positive that she will get better as she’s young and quite strong. She walks well although clumsy and unbalance but can manage quite a bit without assistance. The only thing that troubles us is the breathing difficulty. Recently, she started complaining about the increasing dizziness frequency.

  63. Barbara Carne says:

    Stepping exercise for balance .Stand at step one leg up to step then down ,do other leg continue.Over time you see balance improving with my hubby.

  64. Barbara Carne says:

    Hi Carole, We went to a physio that deals with patients MSA balance issues.
    He walks down a hallway straight line, turning head from side to side looking at walls Sits in a chair and turns his head from side to side but keeping his eyes on the same spot on the wall. Walks down the hallway one foot in front of the other ,have the wall near buy as this is a hard one to do for him, needs to have wall near by to slide hand along when gets overbalanced. Standing still near support has one foot right in front of other, heel to toe of other foot. Daily walking very important as well. My advise would be for your husband be assessed by a physio first. This has helped my hubby as he is walking far more confidently during the day. At night is another matter.

  65. Carole says:

    Hi Kathy,
    You all seem to live in Australia, but I live in Canada. My husband has been having several issues for the last 4+ years (balance, speech, coughing, hiccups). He doesn’t have a specific diagnosis yet, but his neurologist suspects some type of spinocerebellar ataxia. I would very much appreciate having a chance to discuss with you. Can you email me? Carole from Canada

  66. Carole says:

    Hi Barbara,
    Just read your message about your 73 year old husband who has MSA-C, is coughing and has balance issues. My husband is 71 and has similar problems. I would have liked to have more details about the exercises that he does for his balance. Could you contact me via email? Thanks. Carole

  67. Michael Chahine says:

    Hi I Can Be Contacted on 0419239263.
    I have recently diagnosed with MSA-c
    You can E mail your Contact Number then
    I Can contact you guys.
    I have unlimited call facility
    Kind regards
    Michael

  68. kathy fahey (http://none) says:

    hi deb , i spoke to you some time ago ,im sorry to hear ian is getting worse he is so young, but you are a blessing doing what you are in getting an online chat ect , and more and more people are being diagnosed with this horror disease, that brings me to a question , my husband has msa-c and has the lot, balance, speech, swallow,choughing,and a few other things , and also consistent hiccups which sound like he is dry reaching its so annoying and he feels embarrased in public ,does anyone else suffer with this problem i would love to hear from you , all the best to all
    kathy

  69. Barbara Carne says:

    My husband 73 has MSA-C. He used to cough about 24 times a day. We went to a speech pathologist and she suggested that he chew chewing gum as his was coughing most of the time after swallowing saliva. Now he is only coughing about 4 times a day. Great relief .Also he has balance issues .A physio therapist has given him several exercises which has been of great benefit as well. I hope this gives some people ideas to whom to go to get some assistance. We have to keep looking for ideas to assist.

  70. Karen Guo says:

    Dear Debbie
    Can you please let me know the one minute cure and how Ian is doing it? I also want my sister to try Terry Wahl reversing MS theory. Should we buy a book or learn it from a therapist?

    cheers
    Karen

  71. Karen Guo says:

    Dear Debbie
    Thanks for the reply. I also understand that Stem cell is an immature treatment. I may not be able to make a meeting from the 3rd to 6th Nov because i work and live in Ballarat but if you give me your mobile, i can phone for a chat.

    cheers
    Karen

  72. Karen Guo says:

    He Geraldine
    Here is Karen. I wonder whether you know whether Bowen therapy is effective to MSA.

  73. Debbie Templeton says:

    Karen,

    There has just been a conference in the US that I watched last night via the web cam, face book, they spoke of stem cell replacement, but very early in trials and may be years away..

  74. Debbie Templeton says:

    Hi Karen,

    Truly sorry to hear about your sister, We live in central queensland, so I have no idea on doctors down your way. Sorry. There Is a facebook page MSA in Australia and New Zealand there are a lot of members here in Australia. It sounds as though your sister has MSA -C. Ian has MSA -P either way its bloody horrific…. Ian is on the one minute cure and is doing better, he is also taking Himalayn rock salt daily. we are totally organic and trying very hard to follow Terry Wahl reversing MS theory:) Please feel free to contact me at any time. We will be in Melbourne for 3 days from the 3rd to 6th November if you would like to chat… Cheers Debbie

  75. geraldine rose says:

    Karen – have emailed the address that came through on email from here but not sure as it had .como on end – you are welcome to email me on clrintas@yahoo.com.au (clrintas null@null yahoo NULL.com NULL.au) (just in case you don’t get my mail)
    cheers, Geraldine

  76. Karen says:

    Can anyone tell me whether shortness of breath and sleep apnea are symptoms of MSA? It seems that very few people have this symptom and this is the problem that worries us the most because my sister who has been diagnosed with MSA has blocked breath day and night and this has been for years. We don’t know whether it’s related to MSA or it’s a separate issue.

    cheers
    Karen

  77. Karen says:

    Hello Geraldine
    My sister is also diagnosed with MSA and she lives in Adelaide. Would love to chat with you. She’s currently away in China for Chinese medical treatments but be back at the end of next month. She’s only 40 and this discovery has traumatized all us. We’d love to talk to you regarding possible treatment and support in SA. My contact is 0402790208.
    Cheers
    Karen

  78. Karen says:

    Hi Debbie
    Thanks for the posts by you and all the others. We are all the same, suffering from seeing our loved one suffering from MSA. My sister is only 40 and she has just been diagnosed with MSA after many years of weird appearance. She has frequent urination, hypotension and sleep apenea. I am very very sad and really want to know what can be the best way of helping her. She lives in Adelaide but I live close to Melbourne. Do you know any places or doctors that we should go for consultation? Her blood pressure remains very low. People have also talked about the stemcell treatment. What’s your idea about all these things? We are just starting the journey and I will be alongside my sister traveling on it and really appreciate you and many others to be around us. Let’s share the experience and all win the battles.

    cheers
    Karen

  79. Andrew Carragher says:

    Hello Phoebe
    My Father was diagnosed with m.s.a. 5 years ago, I have just found out about the Terry Wahls protocol. Have you any feedback on the wahls protocol diet ? My father is anxious to start it but I want some concrete evidence it will help or benefit him.
    Thanks.

  80. Lisa says:

    My sister was diagnosised with MSA earlier this year . Prior to this she was told she had Parkinson’s , she was told that 6 years ago , she was the. A candidate for deep brain op . She was booked in for the operation in nov 2013 , prior to this she worked and drove . After the op she started to lose bladder control and started falling a lot . Now they say she has Msa .

  81. Debbie Templeton says:

    Hi Chuck,

    Truly sorry to hear about your dad… My hubby is 43 and gets around like a 90 year old, truly devastating, He takes 6-8 tablespoons of coconut oil per day and this helps with his balance… He is also having a teaspoon of Himalayn rock salt per day, this is helping with his pain, also remedial massage.

  82. Debbie Templeton says:

    Morning Leonard,
    I am truly saddened to hear that your wife is now in a home:( It is a truly destructive devastating disease! My hubby 43 was diagnosed in May this year… His progression so far has been very quick, he is no longer allowed to work or drive… I own and operate my own business in the fast food industry and operate 7 days a week, we also live on site. I also have 2 teenage sons, so life was very challenging already, and MSA well what can I say, it has truly just wiped us out… I honestly feel that I am just keeping my nose out of the water while treading like mad! As Ian is still mobile on his own for now, but has to be careful especially on uneven ground, we are trying to travel a bit. That was a rude slap in the face only last month, we went to the Gold Coast to the theme parks which he loves and used to go for days with my boys no stop on the rides! 2 Rides and he was exhausted and in so much pain we had to leave, he went to sleep before we left the car park:(
    Anyway please don’t ever feel your alone because unfortunately there are a lot of people out there with MSA and everyone is happy to talk at anytime. Please send me your email and contact info, if you like, and your wife’s also as she may benefit from some chats with others! My e mail is Debbie.b102@hotmail.com (Debbie NULL.b102 null@null hotmail NULL.com)
    Cheers

  83. Debbie Templeton says:

    Good afternoon,

    I have posted before, my husband, Ian, 43 has been diagnosed with MSA! I am in the process of starting a Email register, I am hoping to start a web based chat room as well, this is being a bit more of a challenge, but am sure we will sort it out soon!

    There are more and more people unfortunately being diagnosed with this dreadful disease, there is also becoming more support out there which is great, technology certainly helps with this…..

    As many people do not like facebook we are trying to get more options for everyone out there. So please send me your details and email, phone number and what ever other info you like…. My email is Debbie.b102@hotmail.com (Debbie NULL.b102 null@null hotmail NULL.com)
    There are some truly amazing people out there and we could all benefit from the info that is popping up!

    Cheers Debbie

  84. Leonard Visconti says:

    In Oct of 2008 my wife (Susan) was diagnosed with ‘something’. The ‘something’ was observed by the neurologist caring for her dad (who they believe had Lewy Body Disease) as the doc noticed something telling in her gait & asked her to schedule a visit. It took about 6 months to determine that her likely disease was MSA. Over the first 2 years things progressed her condition worsened. She went form a cane to a basic walker and her number of falls increased dramtically.

    In 2010 we decided our current home (master bedroom on 2nd floor, no handicapped bath) was not safe for her and we made plans to have a new home built with the master bedroom & attached handicapped bath on the first floor. No more steps for her to negotiate in the house.

    In Feb of 2012 we moved into our new house and it was a great improvement for Susan. But as is the nature of the disease, Susan’s condition continued to decline. Her falls increased and she accumulated broken bones, stiches and staples . But at least the ER was on the next street. They knew us by sight. We upgraded to better walkers and then eventually a Step Walker in which the brakes are engaged by default and you must squeeze the handles to release them.

    I am fortunate that I work out of an office in my home, but do work fulltime and have a demanding job as an IT Security Manager for a very large, global company. As a result, I cannot be a real caregiver, work full-time, and do the required (albeit not all too frequent) travel. So in Jan of 2013 we decided to get in-home caregivers during the 8-5 hours to provide Susan with the personal care she needed. Initially they were extremely helpful, but as the months wore on and Susan’s condition worsened, the increased burden began wearing on both the caregivers and Susan.

    In Feb of 2014 Susan moved to a well-respected, nearby assisted living facility. It was a huge change for Susan and it certainly worsened her depression. But – her falls were reduced significantly and she had 24×7 care – although the responsiveness could be much improved.

    For an number of reasons, Susan has become extremely unhappy at the current home and as a result we’ve put her name on a waiting list of a family-owned group house, also close to home. The ratio of residents to caregivers is much higher, has more of a home-like atmosphere and the residents & staff all seem very close. Susan is looking forward to moving, but according to the owner they will not likely have a vacancy until approximately Jan 2015.

    Susan was a very smart, independent business professional and for her to give up control has been extremely difficult. She has a laptop, an iPhone and iPad to stay linked-in, but they are getting increasingly difficult for her to operate. She is confined to a wheelchair and speaks with a soft, halting voice that is difficult to understand. There are also some cognitive issues. This Thursday, Oct 9th is her 56th birthday and we’re taking her out for dinner. I hope things go well as she is become uncomfortable leaving her surroundings.

    At the end of John’s story about wife Patricia I spotted & stared at the last section. I have uttered those exact words more time than I can remember. I would not wish this disease on my worst enemy. No one should have to suffer like this!

  85. Paula says:

    Oh word Gina Cash,
    As tears of happiness both for u and your client stream down my face I sadly remember the hardship this disease caused my amazing father in law. But I am encouraged that should this same fate befall my husband I will attack this with all my might and I will search for someone like you in my country.
    Thank you and never give up.

  86. Barbara Carne says:

    Hi chuck, My husband has the same, physio has helped with his balance with exercises each day.

  87. Debbie Templeton says:

    Hi gina,
    Thanks for taking the time to blog your experience:) it’s very much appreciated! Ian is really suffering with pain in his hips and back, so it is hardto motivate him into any exercise! He is taking coconut oil that helps him so much, but he sometimes forgets to take it and he ends up very sore very quick:( it is truly hard sometimes to stay positive and up beat! But hearing your story certainly helps:)
    Thanks Debbie Templeton

  88. kathy fahey (http://none) says:

    Hi chuck, sorry to hear about your dad , my husband has msa-c also and he is the same age as your dad, its hard on the family to watch someone they love suffer with this terrible disease,my husband has got the lot balance, speech, difficulty swallowing, and constant hiccup type sounds and cough a lot
    and a few other things i wont mention poor darling ,but we must keep smiling for them and keep there morale up,all the best to you and your family
    kathy

  89. Michelle says:

    My husband has MSA and is in a terrible state. In answer to your question, we do believe it was caused by Lyme Disease. Yes, research is much needed.

  90. Chuck Hasty says:

    My dad was diagnosed with msa-c in October 2013 after a series of misdiagnosed issues. He turned 67 years old in June. He literally moves and acts as if he is 87. Understand in what he says is difficult. Some days it is better but most of the time it is a challenge. Falling is a major issue with him. He has fallen several times in the last 9 months. It is certainly heartbreaking watching a man of his age deteriorate so quickly.

  91. Laura says:

    Wow sounds great. What did he do to improve so much? Would really like like more info. Please share.
    Thank you
    Laura

  92. Laura says:

    HI
    I’ve had symptoms for almost 3 years.
    Just wondering if tachycardia is a common symptom of MSA? I have lots of symptoms including tachycardia, lightheadedness, weakness, body aches, twitches, memory and cognition problems… Do these sound like MSA? Doctors tell me it’s all in my head. I’m 38 year old woman with 4 young children.
    Thank you
    Laura

  93. Gina Cash says:

    This is in response to an earlier post by Debbie Templeton but I have included it here for others to see – JC

    I just wanted to post a few comments here in case this could help any MSA suffers. I am a Personal trainer and have been working with a client for a year now that was diagnosed with MSA 2yrs ago, a year before I met him. He is a 55yo male, had been very active, skier, hiker, etc… He walked with a cane when I met him, balance was horrible, hunched over, physically he seemed to be going downhill fast! But thus guy is determined to physically and mentally fight this disease every step of the way. I write his exercise programs that he does on his own 2days/wk and I work with him 2x wk. He has made huge leaps and strides. He no longer uses his cane, played racquetball last month with me for the first time in 3 yrs, stands up straighter, balance has improved dramatically, i have him jogging now, and he ran his first 5k color run last night! He does still have some bladder issues, but his sweat glands work more efficiently now and most of his other symptoms are rare occurrences ,
    Don’t lose hope… Working with mark has changed my life too! I won’t let him lose sight of what he can do !!

  94. John Cummings says:

    Further comments from the Yahoo Groups MSA support people in response to the post below from Laura:

    Re: Tachycardia
    Sun Jun 29, 2014 6:26 pm (PDT) . Posted by:
    “terri robertson” rterri59

    I just returnedfrom a day’s stay in the ER. While I don’t experience
    tachycardia, I have very irregular heartbeat and chest pain. I had a
    pacemaker implanted in 2008. I’m wondering if “anything heart-related
    goes” with MSA, especially with regard to its rhythm.

    Blessings,
    Terri

    Re: Tachycardia
    Sun Jun 29, 2014 8:26 pm (PDT) . Posted by:

    Tachycardia is also common with thyroid disorders which commonly flare after giving birth. T.Litvak

    Re: Tachycardia
    Mon Jun 30, 2014 2:25 am (PDT) . Posted by:

    Hey Teri I have very irregular heart Rhythm and chest pain at times. It brought about some late night ER visits. It truly hurts,. My doctor explained it is related to Shydrager.. Hope this helps. Gentle hugs!

    Tammy

    Re: Tachycardia
    Mon Jun 30, 2014 10:20 am (PDT) . Posted by:
    “Mary & Bob Stigall”
    I I don’t know anything about Tachycardia and MSA; I had it long before I was diagnosed. Ablation workked fine then.
    ablllation

  95. geraldine rose says:

    i wonder if you’ve had your mitral valve checked? Mitral Valve Prolapse is surprisingly common and may not cause symptoms – if it does they are Palpitations (feelings that your heart is skipping a beat, fluttering, or beating too hard or too fast)
    ‘Shortness of breath.
    Cough.
    Fatigue (tiredness), dizziness, or anxiety.
    Migraine headaches.
    Chest discomfort ‘
    and many others. I only mention it because I was tested for it and around 4 out of 10 people have dysautomia –
    http://www.emedicinehealth.com/mitral_valve_prolapse/page2_em.htm#mitral_valve_prolapse_causes (http://www NULL.emedicinehealth NULL.com/mitral_valve_prolapse/page2_em NULL.htm#mitral_valve_prolapse_causes)
    so it can mimic MSA
    unfortunately that wasn’t the cause of my tachycardia and now bradycardia too
    kind regards Geraldine

  96. Laura Grant-Poirier says:

    Hi my name is Laura and have been experiencing msa symptoms for 2.5 yrs, shortly after the birth of my 4th child. I was just wondering if tachycardia is a common symptom? I get this after waking in the morning and lasts all day. Very forceful heartbeat too.
    Thank you
    Laura

  97. Debbie Templeton says:

    Hi Kathy,

    I would love to have a chat call me any time.please ring me anytime. 0427839035

  98. Gary says:

    Hi,

    I have MSA-C, but have not tried acupuncture or natural medicine. Some people get pain relief with acupuncture; but nothing has been proven to help stop or reverse MSA. Best wishes.

    Gary from WA
    MSA dx’d 2008

  99. Gary says:

    Hi Mark,

    I’d want to know for sure, thus I’d go to the Mayo Clinic. Best wishes.

    Gary in WA
    MSA dx’d 2008

  100. John Ellis says:

    You do have some of the symptoms of MSA-C. I was diagnosed in May of 2011 first with an atxia (Muscle dysfunction in hip) which caused me unable to lift up my right leg more than an inch or so which was noticed plus low conductivity from EMG on right side. Next the symptoms when from NOH to gastroparesis and chronic constipation (enema’s weekly). Your neurologist needs to run a tilt test to check from NOH and an EMG at least before ruling out other diseases like MS. Good Luck I hope you don’t have MSA. Took me 30 minutes to type this and I am not confined to a wheelchair because I am week and I fall often.

    bookguy1950@att.net (bookguy1950 null@null att NULL.net)

  101. Mark says:

    David, very sorry to hear about your loss, I lost my dad in 2013 due to a horrible illness. It sounds like we may be close to the same age, our symptoms are similar and I too am undiagnosed as of yet. I’m in the process of applying for disability after spending 20+ years as a broker.

    You’re always welcome to contact me via email philmaxbasin@gmail.com (philmaxbasin null@null gmail NULL.com) Also wanted to send my best to you and your family, hang in there my friend.

  102. Mark says:

    I am a 43 year old man from Minnesota, although my symptoms are not as severe as most here, I am concerned that I may have MSA. Symptoms started a couple years ago and have progressed over the last 6 months to the point where it’s difficult to function. My dad had a very aggressive form of Parkinson’s and passed away at 72 last year, after spending a long time taking care of him, I was cut out of the will by my stepmother after he passed and left without a job.

    At any rate, I am in a horrible situation but my biggest concern are my physical issues, I’ve yet to get any answers from my neurologist, I’ve been to see him twice. I have ED, frequent urination, muscle fatigue/weakness (especially in legs) lightheadedness, can occur while sitting but is most severe while standing, have not had an actual syncope. Catch myself gasping for air sometimes, this can happen any time of the day but most often while sitting. Have noticed some mild tremors but nothing significant to this point. I can still walk (although not far) and still have the occasional good day but these are becoming more rare. I also have occasional balance issues, adding again that my legs often feel very weak.

    My question is, doctors don’t seem to be taking this seriously, my blood pressure was high while lying down but was the same when I stood up, the PA only waited a few seconds to take it again though after standing. What can I say to my neurologist without telling him how to do his job? I am unable to work, I live on a friends couch, I am educated but my physical issues have drained my bank account, am going to apply for disability. Does it take a specialty clinic to get a diagnosis with this? I’m also wondering why this disease has only recently been discovered, what is the alternative diagnosis? Thanks much and God bless all of you!

  103. kathy fahey (http://none) says:

    Hi barbara my name is kathy ,my husband has msa, the one that is effected by the cerrabellum ,he has trouble walking, talking, coughs a lot and has terrible like hiccips sounds, lots of trouble swollowing, and just recently has had two uti,s he is slowly getting worse and spends most of the day reading or watchung tv which i feel is bordom as he has limited movement ,he is 68 yrs old and was diognosed 7yrs ago its a terrible disease and my heart goes out to all that are going thru this terrible disease ,all the best with everything kathy

  104. Pam says:

    Thank you John and Pam for all of the resources you have provided.
    Just a clarification on the BP…..it fell from 80/60 to 33/22 after being up for 10 minutes. What was strange was it hung at 80/60 for those 9 minutes then plummeted so fast While it was falling that low she flipped the table back and I was close to passing out but was able to stay somewhat alert. Took a while to feel better again.
    My gastro, and vision stuff seem to always be present, what comes and goes is the muscle joint stiffness. Most of my stiffness is in the back of my head down my neck across my shoulders, and the down the center of my chest. I have lost most of my range of motion in my neck on my right side in the morning but by night time I have gained about 3/4 of it back.

    Anyway, thanks you both again. I am going to follow all of the links and join the group. Appreciate you reaching out. From what I have read and heard it is a long process. Patience is not a vertue of mine.

    From someone who went 24/7. I find it strange and difficult to have been forced to become so idle.
    Pam

  105. Barbara Carne says:

    I would like to hear from anyone who is suffering from MSA-C. My husband 73 has been diagnosed with this recently. His signs were drunk walking gate at night all the time now, coughing when eating food , sleep problems, bad restless legs in bed at night. Just recently he has had a fainting spell after getting out of a chair too quickly and walked away and down he went.
    He has been going to a physiotherapist for his balance issues and with a set of daily exercises this has helped a great deal. More confident walking .I am about to make an appointment to see a Speech Pathologist re his coughing ,as we have just discovered that swallowing problems is part of this MSA issue.
    I would be interested if anyone has tried acupuncture or natural therapy’s that have helped. Regards,
    Barbara

  106. Pam says:

    Thank you Gordon!
    Stiffness seems to be one of my biggest issues.
    Appreciate your information.

  107. kathy fahey (http://none) says:

    Hi deb sorry to hear about your husband and so young, its a horrible disease my hubby has suffered for seven years now , he has had a few uti,s and recently spent a week in hospital with bladder infection and chest infection .still not fully recovered but getting there we have found little support and so many different symptom,s my hubby has m s a i would like to call you one day as i would rather talk than write just got to remember the time difference we are in west australia all the best regards kathy (i did already send a reply but it didnt go thru apparantly )

  108. John Ellis says:

    For one of your answers as far as early symptoms and these coming and going yes it does happens. Most of us I say who have MSA have good days and bad days. I had symptoms starting with ED, restless leg syndrome then urinary dysfunction then OH and ataxia. I went to 4 neurologist over 4 years before one connected the dots and one more testing for a week. Since my diagnosis is May of 2011 I have had the above symptoms plus now gastrogaresis, constipation and joints which seem to get frozen or sticky. Join the yahoo shydrager syndrome group we have a lot of nice really caring people were you can get good advise and vent your anger at whoever or whatever. I find your BP readings really weird because 23/30 you would be out and 10 minutes well does not make since. I passed out in less than 2 minutes. Hope to hear from you. Oh the theory why some MSA symptoms come and go is that neuro transmitters are malfunctioning in the cerebellum but why not yet known except there seems to be a build up of some sort of protein that inhibits neurons. I had a spinal tap and had to be tapped 5 times because my spinal fluid was so thick. Later…
    bookguy50:TX

  109. Pam Bower (http://www NULL.msaawareness NULL.org) says:

    Hi Cindy, Can you contact me about ataxia please. I can direct you to lots of resources if you need them. pbower@accesscable.net (pbower null@null accesscable NULL.net) http://www.facebook.com/pam.bower (http://www NULL.facebook NULL.com/pam NULL.bower)

  110. Pam Bower (http://www NULL.msaawareness NULL.org) says:

    To all from Australia, I suggest you get in touch with Linda Williams from the Sydney area as she is very keen to organize support and is hoping to hear more from others with the same interest. Her email is elvis4eva@optusnet.com.au (elvis4eva null@null optusnet NULL.com NULL.au)

    You can also find Linda and others on the MSA Australia and New Zealand facebook group.

    https://www.facebook.com/groups/MSAOZNZ/ (https://www NULL.facebook NULL.com/groups/MSAOZNZ/)

  111. Pam Bower (http://www NULL.msaawareness NULL.org) says:

    Hi Pam, My name is Pam Bower and I’ve been providing info on MSA via the internet for quite a number of years. There are MSA support groups in the Boston area, both online groups and face to face. You can check the Support tab on my website: http://www.msaawareness.org (http://www NULL.msaawareness NULL.org) There is also a non-profit for MSA called the MSA Coalition http://www.multiplesystematrophy.org (http://www NULL.multiplesystematrophy NULL.org) We will have a conference in Washington DC on October 17 and 18. More details will come out soon on our web and facebook pages. Best regards, Pam

  112. Gordon Robertson says:

    Pam – I’m sorry you’re going thru this – hopefully you don’t have MSA.
    Most of my symtoms, once they started, stayed with me. This is a very individual diesease however. My first symtoms were different from yours. These include fatigue and neck pain which are stil very mucih bothering me. Constipation and urination problems came on a little slower and had brief off periods where it didn’t bother me at first. The only symptom that I remember having that dissapeared was I got reaally stiff while in the car whhile driving for several months and it took me 20-30 steps before I could walk well again. Then it stopped doing that and it was 3 years or so before I became stiff all the time.

    Gordon in Oregon
    Dx 5/2012

  113. Pam says:

    Hello,
    This is my first time posting to any site. I have been dealing with autonomic issues for about 2 years. It was not until January of this year did anyone even speak the words dysautonomia. Back in September I ended up with my first syncope and was hospitalized. I was in the hospital for 4 days because they could not get my BP up even with fluids. I was running 40/60. They did all types of tests and thought maybe Addison’s. The put me on florticotisone and sent me to my primary. My primary did not believe I had OH. She did my BP lying and sitting and said it was the same as standing. She said I had stress and put me on anti anxiety. I the ended up in the hospital again with chest pain which was severe tachycardia from climbing a flight of stairs…. I had never experienced it like that before. The good news is that they sent me to the most amazing cardiologist. He was Irish and has the best bedside ever! He spent over an hour with me hearing my history. I also have celiac disease. He asked me if anyone had sent me for autonomic testing. Based on my reaction to the word, he new I had not. The next several months have been all kinds of testing. My tilt test came back 22/33 after 10 minutes up. Sweat test had irregularities. I consider myself lucky because I am in the early stages of whatever I have and I’ve already been able to see a neurologist. She has diagnosed me with OI and tachycardia …..but still more tests. She pulled 21 Giles of blood to rule out every disease none to man :). But I have not been back for my next appointment ….end of this month. Everything I have read with all the symptoms I have, point to POTS or MSA. I live just outside of Boston so have excellent access to health care. The difficult part is getting the appointments. Each time I see someone it is months before the next appointment.
    My question is. When people had early symptoms of MSA, did they come and go. Or once you experienced a symptom did it stay with you. For instance I get awful coat hanger pain that occurs at night and in the morning. It goes away by about 2:00 in the afternoon. I will get it severe for about a week or two. Then it is mild or gone for a few days or for about a week. Same with visual problems, and sweating. Sometimes I’m in the heat and can’t sweat and feel nauseous and faint. Then sometimes when I am in heat I can sweat. I have terrible cold intolerance. I sleep with an electric blanket even when it is hot. I can not find anything that talks about the early stages of MSA so I can not compare what I am experiencing. All the POTS stories and sites that I read sound like my symptoms then I read the MSA stories and sites and I identify with them.
    I have days where I feel like I have the flu and the ran a marathon. I can’t move my body at all. Then a few days will go by and I’m much better. This is all so knew for me. I turn 50 this year. I’ve been very active my whole life, athletic…I ski, snow mobile, boat, water ski, drive my own motorcycle! The florticotisone has helped significantly with the dizziness and unbalance. I’ve been extremely independent my whole life , but lately to take a walk is an afford most days. I am Lucky As I am still able to work, I have an amazing job, but it’s demanding. I cant do half of what I used to do. I am a bit scared if this is MSA, I will not be able to work in a few years. I’m a single mom with 3 teenage children and college is creeping up fast. Any insight for those that can talk about the early years of the disease would be very much appreciated.
    Pam

  114. Debbie Templeton says:

    Hi Rick. Yes I have been in contact with sue has been lovely speaking with her. Ian would love to catch up with you any time also. Sue has all our contact details

    Debbie

  115. Rick Edwards says:

    Hi Debbie, I think my wife Sue has made contact with you.

  116. Rick Edwards says:

    Hi Debbie, I have just turned 51 and was diagnosed with MSA last year. After many visits to my GP I knew something was wrong with me and was finally referred to a Physytian who started to diagnose my problem. Symptoms appeared over several years starting with bouts of low blood pressure, frequent nightly toilet visits, low sex drive and walking like a drunk. I have been living a nightmare ever since. Not having contact with other sufferers has been quite difficult. I live in
    Melbourne and am still quite active. My balance is getting worse, I still drive and also have an electric buggy that I get around on. My blood pressure is very erratic dropping to about 70/40 very quickly without warning. I have to catheterise 100% and my speech is staring to slurr. I cannot work anymore and am struggling to deal with the whole thing. The uncertainty of change doesn’t help. I know it’s going to get worse, but when and what next? It’s also very hard on family.
    I would be happy to discuss further with you.

  117. Debbie Templeton says:

    Hi Geraldine,

    We would love to chat with you. Its certainly a very unforgiving disease. My Hubby is 43. Please feel free to contact us anytime. My Mobile is 0427839035, email Debbie.b102@hotmail.com (Debbie NULL.b102 null@null hotmail NULL.com)

    Look forward to hearing from you.:)

  118. geraldine rose says:

    G’day
    I live in South Oz and I’m 52. I was diagnosed with probable MSA-P last year – would be great to have fellow Aussie to share stuff with – I agree. there is not much here for us in terms of support.
    Cheers, GR

  119. Debbie Templeton says:

    Hi My name is Debbie, My husband has just been diagnosed with MSA-P and is 43.
    We are still struggling to process this information. I have been very disappointed with the lack of support that is out there. thank heavens for sites like this and this wonderful couple who have taken the time to share their story. We are on the beginning of a very long road I have no doubt about that! I will certainly keep close contact with this site, through our journey. We are in Queensland, Australia, if anyone out there is wanting other aussies to contact please contact us. 0427839035
    Debbie and Ian

    PS – Debbie has also replied to comments below from Kathy (23 April 2014) and Cathy Pfeil (3 Feb 2014) – JC

  120. Debbie Templeton says:

    Hi Kathy, we are in Queensland Australia. My hubby 43 has just been diagnosed with MSA-P, he has very limited use on his right side. We are looking at a lot of alternative medicines as there is nothing to help from the specialists:( We are looking into bowen therapy, accupuncter, aqua formulas and cannabis oils and juice. People with MSA are getting good results with this. Better than trying nothing! Just not much positive out there!! Good luck with your sister, I hope to find people here in aus that are in our position and maybe help each other. Debbie

  121. Debbie Templeton says:

    Hi Cathy,
    we live in central queensland Australia. My husband IS 43 and has just been diagnosed with MSA -P. We are crazily trying to find as mush info as possible. In three years ian has pretty much lost all use of his right arm and hand. His right leg is shocking and his gait is very laboured. we are really just hoping for a miracle. He has been put on Parkinsons medication.

    Debbie

  122. Phoebe Harrison says:

    Maree,
    My research has now convinced me that MSA is an auto-immune disease as are MS, fibromyalgia, parkinsons and many others.
    The only treatment for MSA seems to be to do with diet. We are now trying the Wahls Protocol which is a Paleo type diet with lots of fresh fruit and veg, meat etc. all organic where possible. We still have Bowen weekly.
    Baden was diagnosed 5 years ago and is still mobile though on bad days we use the wheelchair. Check out http://www.terrywahls.com (http://www NULL.terrywahls NULL.com)
    good luck
    Phoebe Harrison

  123. John Ellis says:

    To Anne Mallen – sorry I have not replied to your chat request. I have been battling joint encapsulation which is what they call my problem with my shoulder joints. Since my balance is so screwed up I try to stay in a wheelchair except when cling to walls and cane at home. I have most symptoms of MSA except for swallowing problems and most of my problems are mild which I hope they stay that way. They say that most MSA patients are confined to a wheelchair before there 5 year and totally bed confined after that. I hate said news or words like this. I really believe that the Lord is or has cured me or at least he plans to keep me around for reasons unknown. E-mail more or call if you like. I don’t always have my cellphone on but if you leave message I will call back. (903-245-9352) Tyler, Texas ) Central Time.

  124. Gary says:

    Hi Kathy,

    Large studies (involving hundreds of people with MSA) have not found a common cause of MSA; environmental toxin (including well water) may be a precursor, but it begs the question why are not spouses, who have been exposed to the same, suffering from MSA, too? So far, no link to stress, though that has been suggested.

    Research: Probably, what you said about research spending could be said of all rare diseases. I’ve heard, but I forget, the proportion of people with Parkinson’s to people with MSA. I know it’s huge. Usually research dollars are awarded based on the number of people with the disorder, not the severity of the disorder. There are exceptions, of course, but your point is correct — the millions spent on MSA research is nothing compared on the hundreds of millions spent on Parkinson’s, Alzheimer’s and other neurological research. Some day a cause/cure for MSA will be found; my hunch is it will be when cures for other neurological disorders are discovered.

  125. John Ellis says:

    Sorry I have not replied to your chat request. I have been battling joint encapsulation which is what they call my problem with my shoulder joints. Since my balance is so screwed up I try to stay in a wheelchair except when cling to walls and cane at home. I have most symptoms of MSA except for swallowing problems and most of my problems are mild which I hope they stay that way. They say that most MSA patients are confined to a wheelchair before there 5 year and totally bed confined after that. I hate said news or words like this. I really believe that the Lord is or has cured me or at least he plans to keep me around for reasons unknown. E-mail more or call if you like. I don’t always have my cellphone on but if you leave message I will call back. (903-245-9352) Tyler, Texas ) Central Time.

  126. Gary says:

    Hi Eldin,

    I think even Mayo would say that stem cell research is very experimental. It has been practiced in other countries for years, with no documented dbl blind studies. So beware, 10s of thousands of dollars can easily be spent on experimental therapies, but none have been shown to change the outcome for people with MSA.

    Also (you didn’t ask) it is very unusual for someone with MSA to be diagnosed with MSA at 31. Do you have a second opinion from some who has experience diagnosing and treating this rare disorder?

  127. Eldin says:

    I am 31 years old guy suffering from MSA. I read about all those people who are suffering from this terrible disease each day. It breaks my heart to know that my end will be so painful. Some things in life we can overcome, but when death is facing you nobody can bear the pain. No one understands the pain. I was just researching on the Stem cell trials in Mayo clinic. I just wanted to know if they are worth trying ? I don’t want rest of my family to suffer by pushing them into financial burden of my expenses. We are really poor. But I want to live. I am only 31 others have at least spent some life enjoying but myself I am dying at the middle of my life. Can you suggest based on your experiences if I can have hope of prolonging my life with stem cells treatment.

  128. Eldin says:

    I am 31 years old guy suffering from MSA. I read about all those people who are suffering from this terrible disease each day. It breaks my heart to know that my end will be so painful. Some things in life we can overcome, but when death is facing you nobody can bear the pain. No one understands the pain. I was just researching on the Stem cell trials in Mayo clinic. I just wanted to know if they are worth trying ? I don’t want rest of my family to suffer by pushing them into financial burden of my expenses. We are really poor. But I want to live. I am only 31 others have at least spent some life enjoying but myself I am dying at the middle of my life. Can you suggest based on your experiences if I can have hope of prolonging my life with stem cells treatment.

  129. Kathy says:

    My sister was diagnosed with Parkinson’s Disease a few years ago, but about a year ago learned she has MSA. She can no longer walk without help, has had many UTI’s,very low blood pressure, and has fainted twice recently. She also has problems with her bowels, speech and now has trouble swallowing. It seems she develops one problem after another. This disease is worst than cancer…she has her mind but not use of her body. She is 55 years old, way too young to be dealing with this disease. More research is needed. Does anyone believe this is caused by stress or some sort of traumatic event in their lives? I know there is no cure, so why if this disease is fatal don’t they have more research. The Parkinson’s medicine doesn’t even help, so she is now cutting back on the medication. And like I said, this is such a horrible disease much worst than any other disease and or sickness.

  130. Maree Chapman says:

    What is the similarity between multiple sclerosis, MSA, Fibromyalgia & spinocerebellar ataxia please.

  131. Cindi Brannon says:

    Hi David, most folks say that MSA is not hereditary but it may be. My husband passed away 01-09 of MSA-C and while we were trying to get a dx his older brother was having the same symptoms. Today he is having all of the symptoms and they dx him with ataxia and low blood pressure. He is a retired fireman and his children believe he has MSA but his new wife says no that it is just ataxia. Uh, Duh… What do you all think?

  132. Juan Domingo says:

    JC
    I just read all the posts on your site and found them very helpful. Thanks-
    Juan in Mexico

  133. John Ellis says:

    MSA is not hereditary except those strains from Japan. Symptoms include ataxia prolems (gate), NOH, balance and coordination (Parkinson like symptoms). Cerebellar problems which cause shut down or changes in the bladder, stomach and bowels), such disease or symptoms of gastroparesis, turbid colon, constant constipation and more. Most MSA patients have no problem with cognitive skills and in fact even until the end the patient is fully aware of what is happening, however they have little control. I was diagnosed in May of 2011 and I am still walking some and have stomach, bowel problems, constant constipation (enema’s) weekly and problems now with movement or arms and legs like joints are painfull. GP says joint problems is due to atrophy of tendons and muscles causing looseness in joints.

  134. Surfcoastwombat says:

    David

    It’s not for me to say but my understanding is that MSA is still NOT thought
    to be hereditary. And you are doing the right thing by seeing a neurologist
    – they are the only people who can advise. Very few will say a patient has
    MSA for certain – Patricia’s neurologist said he was very sure that she had
    the SND form MSA but he said that only an autopsy would prove it – which it
    did.

    But if your neurologist is of the opinion that you don’t have MSA, ask him
    to investigate Lumbar Canal Stenosis. I suffer from this ailment and have
    many of your symptoms.

    Also – you say you were an airline pilot which means spending hours sitting
    in a less than desirable seat – not good for our backs. I have a friend
    here where I live who is a retired airline pilot and he has terrible back
    and legs/feet problems which he attributes to his having been a pilot.

    Take care
    JC

  135. David says:

    My father passed away on April 2 this year(age 79) due to MSA complications. I have been disabled since April 2013 with an undiagnosed disease. As I learn more I believe I may have MSA. The symptoms I have had include trouble walking,, a urinary problem, ED, constant pain (especially legs/feet and back), balance problem and trouble sleeping. Just went to a neurologist who ruled out ALS and MD. I plan on asking him about MSA on my next visit. I will look into the treatments mentioned above. Any evidence that MSA is hereditary?
    After being a fit athlete for years, an airline pilot and father to two young sons all I can say is MSA is a very cruel disese. Thanks for listening from Arizona, USA.

  136. Michele says:

    My husband has had msa for almost 8 years now. He used to get hiccups that lasted for days without stopping. He went to ER for relief but they didn’t know much. Finally a dr. from UCLA recommended Baclofen! It worked like a dream. I just keep some on hand and administer during a hiccup episode until they go away. It will make your husband quite sleepy and out of it. Those long term hiccups set your husbands health back and it’s hard to gain ground again. My husband is on no specific meds. It has to do with the inability to control the air passing in and out. This will surely help!
    Michele

  137. Anne Mallen says:

    Hi John, my husband was diagnosed with MSA in October 2012. We have been spending a lot of time in Aireys lately and I am now considering a move to Anglesea. I was checking out the local clubs etc and came across your name for the crossword group. I wonder if you could spare me say half an hour one day to meet for a chat. There are so many things to consider it is difficult to know what is best. Ronan is still ambulatory, walking with a stick, but he also has quite a few cognitive issues. I have found your website extremely helpful, especially at the start when we had no idea what we were facing. Thank you for putting so much information out there. If you do not have time to meet, perhaps we could talk on the phone. Thanking you in advance, Anne

  138. Sandra McPhall (http://www NULL.newchapterlearning NULL.net) says:

    Cathy.

    Thank you for your reply. In September 2013 I found the book: Stop Parkin’ and Start Livin’ by John Coleman. We read his book then on October 15th my husband began the protocol outlined in the book including Aqua homeopathic drops, Bowen Therapy, diet, exercise, meditation, etc. My husband began improving within weeks. While he is not completely symptom free yet, he is showing slow and steady improvements each month.

    John Coleman lives in Australia. He was diagnosed with Parkinson’s Disease in 2005, 3 years later he was and still is symptom free. John has worked with over 2,500 clients with all the neurological diseases; MSA, Parkinson’s, MS, ALS, etc.

    According to John Coleman, 80% of his and his clients recovery is attributed to using the Aqua hydration drops, 20% of the recovery is attributed to Bowen Therapy. According to John Coleman, within 3 months of taking the Aqua Homeopathic Drops the client will begin feeling better, within 3 years the client will be symptom free.

    It is my sincere hope that others will read this good news and will be able to benefit from John Coleman’s work.
    Love to all, Sandy from Michigan, USA

  139. Sandra McPhall (http://www NULL.newchapterlearning NULL.net) says:

    Hello Phoebe and Kathy.

    I want to Thank You from the bottom of my heart for sharing the information on Bowen therapy. My research on Bowen Therapy led me to book: Stop Parkin’ and Start Livin’ by John Coleman. We read his book and on October 15th my husband began the protocol outlined in the book including Aqua homeopathic drops, Bowen Therapy, diet, exercise, meditation, etc. My husband began improving within weeks. While he is not completely symptom free, he is showing slow and steady improvements each month.

    John Coleman lives in Australia. He was diagnosed with Parkinson’s Disease in 2005, 3 years later he was and still is symptom free. John has worked with over 2,500 clients with all the neurological diseases; MSA, Parkinson’s, MS, ALS, etc.

    According to John Coleman, 80% of his and his clients recovery is attributed to using the Aqua hydration drops, 20% of the recovery is attributed to Bowen Therapy. According to John Coleman, within 3 months of taking the Aqua Homeopathic Drops the client will begin feeling better, within 3 years the client will be symptom free.

    It is my sincere hope that others will read this good news and will be able to benefit from John Coleman’s work.
    Love to all, Sandy from Michigan, USA

  140. Cathy Pfeil says:

    Note: This post is in reply to Sandy’s post of 15 September 2013 – see below. I have moved it here as it may otherwise get overlooked – JC.

    You were asking about alternative medicine. Here is my list of what I have tried:
    Heller work, Rolfing, Watzu water therapy, Homeopathies, herbs, vitamins, acupuncture, osteopathic adjustments, chiropractic adjustments, cranial Sacral adjustments, specific chiropractic work that only adjusts the neck.

    I have gone to Brazil to see John of God, have many kinds of hands on healing like Reiki and therapeutic Touch and several “tapping” techniques to “clear emotional interference causing disease”. I have done past life therapy, had an exorcisms to remove the bad entity causing my sickness, from several different cultural perspectives. I have seen a Shaman, therapists, re-read my fortune cookie that reminded me that I will find peace in all I do.
    And a whole bunch of other things, really for a while I was doing everything., oh and I am on as many prayer circle lists that is humanly possible.

    So what works? All of it and none of it. I find I do what feels good, what helps me feel nurtured and well. I lean towards therapies that see the world as connected, not that there is some bad whatever that has caused my illness. Today the best therapy for me is massage. I am so fortunate my insurance pays for part of this.

    I have meals delivered three nights a week from Meal Train friends and family. The soup they bring fills in nicely so I always have some nice homemade soup in the fridge. That fills my heart, soul and tummy!

    I am thinking of creating a program like Meal Train (or with them) about visits and people with the desire to be of healing. Including the length of the visit (short and sweet) with the understanding that me saying I have had enough trumps all.
    On my “alternatives allowed” list is:
    Hands on healing with out talking;
    sitting quietly in meditation and prayer;
    a chocolate shake from Big Tom’s, a family run burger stand in our town; or if I am doing well, arrange to take me someplace with my electric cart, for lunch, a drive, or a movie (my energy level trumps all and we head home)
    Bring a book you like, a DVD or something spiritual and then we can have a discussion afterwards.
    Cookies are welcome, but an hour in my garden is even more welcome!
    Help me go through my books, and be ready for long stories about each one of the many authors I have met, and the enjoyment I received from reading that book. Now I lovingly pass them on.

    Find your pace, do something you love everyday and include something “non-medical” in your routine. I find my words/thoughts create my actions and my emotional response to what is happening so stay positive! Oh yes, keep people who see you as a walking (okay, rolling) doomsday, on some death timetable, and feel the need to add that they think that “this is the most horrible disease ever” FAR AWAY.

    Only patients and our caretakers know the truth of what is real for us day today. If any one wants to rave and cry for a bit I am ready to hear you, this is part of healing too.

    Peace to you all,
    Cathy Pfeil
    I blog about MSA and was recently interview on Hay House Radio (I spoke about MSA) Both of these and much more can be found on my webpage:
    http://www.cathypfeil.com (http://www NULL.cathypfeil NULL.com)

  141. Terri Robertson (http://google) says:

    I,too, am glad that I discovered this website and hope that I get some responses to the one I posted hours ago, 2/2.

    From Terri
    USA, Virginia

  142. Terri Robertson (http://google) says:

    I am quite moved by ALL of the stories and comments regarding MSA and their caregivers. I began having slight tremors on my left side in 2008, and now in 2013, I am retired from a professional career I loved. Mu neurologist diagnosed me with an autonomic dysfunction but stopped short of saying what I have specifically. However, I know it’s MSA. I have every symptom listed anywhere I’ve read about this disease. Now, I am having increased trouble getting words out (of my brain and mouth) and notice more choking on my saliva. I use a walker. I have a pacemaker and am cath dependent. Bowel problems are starting. Comments on the diagnosis and/or progression, anyone? The heart pacemaker and the cath issues began in 2009-10. I have OH. I wear a pain patch for horrible muscle and joint pain. My vision is blurry.
    Thanks and God’s blessings to all. From USA, Virginia.

  143. Valerie Johnson says:

    Darla,
    My sister in law in Loveland, CO has MSA. She has had it for a little over 3years and is now on hospice. My question to you is have you come across any info that could connect shock therapy and MSA?

  144. Darla Rutherford says:

    Hello,
    I am Darla and my husband has MSA. MSA is the most cruel disease I know of. If you would like someone to talk to please call me. I am in Mineola Texas 903-569-5220. I have researched this disease as much as anyone could. I may not have answers for you, but I truly understand.
    Darla

  145. Surfcoastwombat says:

    I am in Australia but the best person for you to contact is Vera James – her late husband had MSA and she is actively involved in a number of MSA support organisations – lovely lady.

    Her toll free number is 1-866-737-5999 ex 202 and you can call and speak with her. She will try to help you with anything she can. I think she might be away for a couple of days so if she is not there when you call , leave a message when it goes to voice mail and she will get back to you as soon as she returns.

    Cheers
    JC

  146. Alee says:

    Needing someone to talk to. Dad has MSA. Not sure how to even process this anymore. Trying to keep strong for Mama and the brothers.

  147. Phoebe Harrison says:

    Hi Sandy,
    We are just back from a visit to Baden’s neurologist in Sydney and he cannot believe that one can go from being wheelchair bound and high care in May to now walking without aid about 1/2 km a day. All I can put it down to is the bowen. I think having it weekly is important. My therapist has talked to one in Bathurst who is having success with an MS patient. I don’t think it is too late for you. Baden was diagnosed in 2009 but had been unwell for several years.
    Don’t give up
    Good luck
    Phoebe

  148. kathy says:

    Hi Sandy,
    sorry to hear your hubby has this terrible disease also , my hubby has only had four bowen treatments so far and our therapist has got him on five different minerals , i would love to say he is getting better but not much change just yet but he has had msa since 2007 so we may have left it to late ,keep to your alternative therapy its much better than the other drugs ,pheobe hubby seems to be having great improvement with bowen and alternative meds , if i can be of any help to you please dont hesitate to contact me i live in west australia
    Kathy

  149. Sandy says:

    This is in response to posts below by Phoebe and Kathy re Bowen therapy:

    Kathy, thanks for the info. My husband was recently diagnosed and I am looking into the Bowen therapy locally. What have you tried with natural therapies. All prescription drugs have not worked with my husband. I was an alternative provider in the past, therefore fairly educated on all alternative supplements.
    Looking forward to your feedback.

  150. John Cummings says:

    Hi Rosalind

    Firstly I have to say that although I do maintain this site, I am not actively working in the MSA community as I simply do not have the time. I share your sentiments and find it strange that Parkinson’s NSW are unaware of MSA World Awareness Day. I will forward this on to a couple of people who may be able to assist you.

    All the best
    JC

  151. Rosalind Chester says:

    hi, my name is Rosalind I live in Newcastle New South Wales (Australia) I was diagnosed with m s a in November last year. while doing some research on m s a on the net I came across world awareness day 3rd of October 2013 did know about this? I cant seem to find anyone here in Australia knows about it. I have contacted Parkinson n s w and they don’t know about it….why not it is world awareness day. because I have this terrible disease I feel strongly about getting it out there and doing a lot more research. I value your opinion.
    cheers
    Rosalind

  152. Phoebe Harrison says:

    Sorry I forgot the website.
    It is terrywahls.com
    or just google Terry Wahls
    Phoebe

  153. Phoebe Harrison says:

    Further to my posting on this site in July Baden has continued to improve. He is now walking using a stick only which he carries rather than uses. In the house he doesn’t bother with it. He can generally now toilet himself and clean his teeth alone.
    I am able to spend time in the garden and check on him every hour or so rather than stay inside. We continue the Bowen therapy weekly (our therapist comes to the house) But Baden is able to visit his GP, dentist etc when necessary. For a while we couldn’t get him in the car. He seems to be getting stronger but the fatigue still worries him.
    I found another website worth looking at for anyone interested. It is about MS but relates to any auto immune diseases. Anything that gives hope is worth a try.
    Life for me is now so much better. Baden sleeps all night and that is so much better for both of us. He has a urodome for nights so we don’t have to get up for the toilet.
    A good nights sleep is essential for the carer.
    Phoebe

  154. k says:

    Hi there!
    My dad was diagnosed a few years ago and his msa has started to rapidly progress. I’m 23 and still living at home, between my mum my brother and myself we have been able to keep dad at home and are hoping to continue this. He has been in Bethlehem hospital and will hopefully be coming home soon. We had a very strained relationship due to behaviours that the neurologist states being a result of his msa but have worked through these issues which I feel is very important. I have come to terms with the fact that he will pass in the near future, however I am struggling with issues of timing and the not knowing how long he has left.

  155. Vera (http://www NULL.MultipleSystemAtrophy NULL.org) says:

    Terry, each of us here who have been caregiver to our love one or are now a caregiver/carepartner understand the feelings you are having. This is not just hard for the patient, but also for those who are close to them. My husband had a diagnose of MSA and as you said it can be so different. I would call it a yoyo illness, as we never knew from day to day or hour to hour what would happen. I was my husbands one and only 24/7 carepartner until he passed in 2003. It wasn’t easy but try to find the blessing each day. You may not feel there are any , but there are . Below is a motto I found and I lived by it. “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says “I’ll try again tomorrow”

  156. Vera (http://www NULL.MultipleSystemAtrophy NULL.org) says:

    Nadine,
    During these times your husband is having these spells you may want to check and see if his bloodpressure has dropped. Balance, blurried vision and head feeling strange can all be a symptom that is a drop in blood pressure (Orthostatic Hypotension). For drooling there are Scopolamine patches or scopoderm T that has helped some of the patients with that problem. Other’s may need to use a suction machine.

  157. Nadine Peterson says:

    Thank you for the wonderful site. Congrats on finding happiness after going through this terrible disease. My husband has been diagnosed with MSA and recently has started having “spells” for lack of knowing what word to use to describe it. He begins drooling very badly, says he has a bad taste in his mouth, tightens and extends his lower jaw, his personality changes and he becomes very agitated, trouble seeing and says his head feels strange and his balance is off. Has anyone else experienced this? It started about two months ago but it’s happening more frequent. I appreciate any comments.

  158. terry (http://terry1954 NULL.wordpress NULL.com) says:

    I don’t know how it is going for you now but my life is a living hell. My brother has M.S.A. He is in Hospice care and each day, sometimes each hour can be so different. My brother keeps telling me he won’t be here in a week. He says he will die. It is breaking my heart. He can stand with assistance for about five seconds. Any thing else he has to have help. Eating, brushing his teeth, bathing , everything

  159. kathy says:

    Hi Phoebe,
    sorry to hear your husband has this terrible disease also , my husband was diagnosed in 2007 , he is still able to get around the house with a walker but very slowly , and doesnt do very much theses days and doesnt seem very interested in much at all , but im intruiged about the bowen ,i have had this done myself some time ago and found it helpful for fibromyalgia so i would aprciate so more info if thats possible i live in western australia. all the best
    regards kathy

  160. Vera James (http://www NULL.MultipleSystemAtrophy NULL.org) says:

    Annika , the fb page is still there . It’s called “Kids of MSA. Everyone on there is 25 or younger. You do have to ask to be invited in as it’s a closed group. I really think that would be a good place for you being the age you are and that group can relate to what you are feeling.
    https://www.facebook.com/groups/133820770123870 (https://www NULL.facebook NULL.com/groups/133820770123870)
    You can also stay on here and ask questions of this group.

  161. Vera James (http://www NULL.MultipleSystemAtrophy NULL.org) says:

    Annika,
    I am sorry that your father was diagnose with MSA. My children were in their early 20’s when my husband received his diagnose. It was very hard on my daughter as she was daddy’s little girl.
    I believe there was a daughter of a patient who was going to start a fb page for Children of a parent with MSA. I am trying to get that information for you as that would be a very good place to join if infact they did get it started. Once I find out if it is still on fb I will get back to you . I know right now this comes as a shock to you , but know your not alone.

  162. Annika says:

    Hi.

    I don’t know if you even read these anymore. Anywhoo, my daddy was diagnosed with msa today, after being an ms-patient for about 6-7 years. I’m now 20 years old, so this has been going on since I was 13. I feel completely hopeless right now, and just how unfair can life be sometimes. My dad has been in the hospital for about half a year after he crashed. He talks complete nonsense, can’t eat or move properly anymore — however he still recognises me and my mom. If you have any words of hope or anything to offer, I’d love to know them.

    It’s so hard to realise that possibly soon I’m not going to be anyone’s little girl anymore.

  163. Phoebe Harrison says:

    My husband was diagnosed with MSA in 2009 and as we were told there was no hope of recovery we followed the naturopathic path. The only thing that gave us any hope of recovery was a book given by a friend. It is called ‘Stop Parkin, Start Walkin’ by John Coleman. We met John and began on his program.
    This worked well until towards the end of 2012 when Baden began falling.
    He continued to get worse until early May when he was put in hospital.
    The hospital staff suggested a nursing home at this stage.
    I brought him home and with some help managed or should I say coped.
    He required a hoist, commode, and all the paraphernalia that goes with such lack of mobility. Our house became a nursing home with hospital beds, wheelchair and so on.
    We continue the naturopathic program we were on but have now found an excellent Bowen practitioner who comes to the house once a week.
    Baden is now once again mobile (with a walker), he is not sleeping all day as he was and complains of boredom (a good sign he is getting better).
    He now walks every day around the street and seldom falls.
    My reason for writing is that if this info can help anyone else in the situation we found ourselves in then I will be happy. Living with MSA is ones worst nightmare.
    My advice is find a good Bowen therapist and do a little often. It is working for Baden.

    I will be happy to talk to anyone about our experience

    Good luck

    Phoebe

  164. Archana Bhat says:

    Hi John

    Thank you for a very moving and informative website. My father is diagnosed with MSA and is in the hospital with riley tubes (for food) and oxygen to assist breathing. He had a mild stroke in 2008 and has deteriorated rapidly since then. My mother is his carer and it is sad to see what their life has turned out to be. Once a gregarious and enthusiastic person, my dad is reduced to such a state where he is unable to communicate the minutest of wishes. It is indeed a brutal disease to be diagnosed with.
    We, as a family, are hoping that he is relieved of the distress he is under.

    I thank you for the information on your website.

  165. Leanne Farrelly says:

    Hello John
    I recently lost my Mum, Janet to MSA, 6 years after her diagnosis. I am writing today to thank you for your website. I would often read the comments (clutching at straws for information or ideas to combat the latest hurdle). I found the diary of your time caring for Patricia both moving and informative. It helped my family and I understand what complications Mum was experiencing and also to a degree, what to expect as time went on and the disease took hold. In the past 6 months or so she was unable to move and her speech had become nonexistant.
    She was restricted to thickened drinks and soups due to swallowing difficulties. I am thankful to say Mum passed unexpectedly but peacefully on a Sunday afternoon.
    Once again, thank you for taking the time to share your story, I know it is making a difference to the lives of many people touched by this disease. Regards, Leanne

  166. Martin Davies (http://www NULL.martindavies NULL.com NULL.au) says:

    Hi John
    You may not remember me, but you kindly rang me after I contacted you back in 2003 — in desperation — regarding my father, who acquired MSA in is early 70s. Dad took his own life at the age of 73 rather than face his declining prospects. I recall you rang me not long after this occurred, unawares that it had happened only a day or so before. You were ringing to inform me about palliative care options I recall. I was probably rather short with you on the ‘phone, but I was still in shock. Now 10 years on, the pain has dimmed somewhat, for my family and I, time has lessened the trauma, but how I still miss my Dad so very much. It is a truly terrible disease, and I wish all those suffering from it all my sympathy and support. Today I hear that the US government is putting a great deal of money into “mapping” brain connections. This may, in time, lead to some benefits for MSA sufferers.

    Do keep the site going, as many learn and benefit from it.

    Martin

  167. Surfcoastwombat says:

    I am a fan of stem cell research but certainly am not an expert. I suggest you research this avenue very carefully.

  168. Devendra Mankoti says:

    Dear Linda and all others ,
    I am diagonsed with MSA. I encountered a site – unistemcells.com of China. It boasts of controlling and improving this ailment through stem cell transplant.
    I am contemplating to take a chance. You can go through this site and research. – Devendra

  169. Babz says:

    This is a very moving website. My husband does not have MSA, but Lewy Body Disease. However, the physical struggles are so similar. Any brain disease is horrific. My husband is now in a geriatric psychiatric hospital and it’s unknown if it will help. He can no longer walk and has become quite delirious, which is why he’s at the hospital. This is my first post, although I’ve been wanting to contact people struggling with similar situations to know I’m not alone.

    Thank you for your wonderful website, story and assistance.

  170. Phoebe Harrison says:

    Dear Linda,
    My husband was diagnosed with MSA in 2009. We went the naturopathic way as our neurologist gave us no hope at all. He actually improved on a program of no chemicals in the house, good food, Bowen massage, aquas (www.aquaformulas.com), vitamins etc. He has this summer begun to get worse. We did get 4years respite for which we are thankful but don’t know what else to try. Naturopath says it is 80% love, laughter and meditation, 16% aquas, 3% Bowen, 1% everything else. At the moment we find it hard to laugh. We are in the country in Australia.
    regards Phoebe

  171. kathy says:

    Hi Mark ,
    sorry to hear your wife has this terrible disease also, glad your wife’s hiccups have gone, my hubby’s seem to have worsened as time goes on,the doctors have no idea only that it must be to do with his swallow he isn’t on any medication so I’m at my wits end as its very annoying for us both.

    all the best to you and your wife

    king regards kathy

  172. mark says:

    Hello Kathy
    my wife has been diagnosed with MSA. She also went through a time period of severe hiccups. they passed without knowing why but her meds have been changed as well. good luck to you both.

  173. kathy says:

    hi Jacquline ,
    thank you for your response much appriciated , and sorry to hear about your husband its a terrible disease ,i will mention to our doc about it ,but my hubby only takes meds for indergestion but you never no, he hiccups all the time probably 50 times while he is awake its so frustrating for him often he sounds like he is dry reaching , thanks again for your input , all the best
    kathy

  174. Jacqueline says:

    Hello Kathy,
    My husband has msa and he suffered from hiccups that would go on for days at a time. The three times this occurred he ended up in ER. It was finally determined that one of his medication triggered this occurrence. He no longer suffers from that problem, and I say that problem because he has every problem surviving but that. We live in Happy Valley, Oregon.

  175. CathyWise (http://google) says:

    I too have MSA. I’m 62 and in perfect health ( except for the MSA ) I have mostly cerebellar. I do not want a PEG tube, ET tube, trache,etc.,etc. I have filled out a DNR and a MOLST form. I certainly don’t want to be a burden to my family and there are worse things than Death

  176. Surfcoastwombat says:

    Hi Kathy

    Sorry to hear about your husband with MSA.

    I have not personally come across hiccupping associated with MSA. I would suggest perhaps talking to a Gastroenterologist. Are you in Sydney? – I understand they have a good Neurology service at Westmead Hospital.

    I have copied this reply to Vera James who is an MSA support specialist in the USA who may be able to shed some light on this symptom.

  177. Kathy Fahey says:

    Hi John ,

    I also read your very moving and brave story, you had such great love and patience, I only hope I can have the same for my husband of 47 yrs who has msa now for five years, he is slowly getting worse his spends more and more time resting and has very little strength , my question to you thou is, with all yor dealings with msa have you heard of people having constant hiccups . i know msa sufferers sigh gulp when swallowing and make a few other sounds but all my research i cant find anyone that had the constant hiccup and its very frustrating for him and annoying to me on top of all the other sounds he tends to make .

    I hope you dont mind me emailing you but we dont seem to get much help from our doctor and im at my wits end so if you could possibly give me an answer id be grateful

    I Thank you for time and wish you all the very best

    kind regars kathy

  178. Surfcoastwombat says:

    Hi Linda

    So sorry to hear your husband has been diagnosed with MSA. I am not able to comment on wellness information except to say that proper diet and exercise can only be beneficial but whether or not it can slow down MSA – I cannot say. I have copied two ladies on this reply – Vera is in the US and Pam is in Canada – if anyone is aware of any wellness advice for people with MSA and their Carers, then they will know.

  179. linda mcallister says:

    thank you so very much for this site. My husband of 47 years was recently diagnosed with msa…. we live in a small town in Oregon and have very little info other than the internet… the 2 neurologists we have seen just gave us a diagnosis and sent us on our way. We both have counselors, he has a nutritionist and physical therapist. most days we walk or go to the gym so we are grateful that he has most of his abilities. One of my many frustrations is not finding any wellness info……surely being mentally and physically active must have some benefits. we are thinking of seeing a naturopath in that we would expect a more positve approach…. do you have an opinion on that or websites we should visit. thanks in advance. we have so many questions…..on the bright side, we are working on the bucket list and just had a wonderful Hawaii trip.
    Linda

  180. Surfcoastwombat says:

    Hello Rosie

    I was saddened to get your email and to hear of Bob’s likely diagnosis.

    To attempt to answer your questions properly would involve a very lengthy email – there are so many “what-ifs” and secondary questions and comments. If it suits you, I would be more than happy to phone you and try and answer your questions verbally – I think it would be much easier and more comprehensive. But remember – I am not a health professional.

    If you would like that, perhaps you could send me your phone number and suggest a suitable time or times to call, and also to consider whether or not you wish Bob to be involved in the discussion.

  181. Rosie says:

    Dear John

    My husband, Bob, was diagnosed with MSA-C two years ago. Reading your website has been so enlightening and the love you felt for Patricia shines through all your writing. I only hope that when it comes time for me to become Bob’s full-time carer that I will be as nurturing, loving and patient as you clearly were.

    I was wondering if I could ask you for some advice? We have recently returned from living in Europe and planned to build a house in the seaside town of Merimbula on the NSW/Victorian border. It is 6 hours drive from Melbourne and Sydney and 3 hours from Canberra. At our last Neurologist appointment, our Sydney specialist analysed the changes in Bob’s most recent MRI scan results which showed the cerabellum having shrunk a little more and the basal ganglia compromised. He told us that there has been mild to moderate progression since the first MRI which was done two years ago and that Bob is experiencing a very gentle progression. BUT he also said that he felt it would be very foolish for us to leave a large city with large hospitals and specialist neurologists.

    I was under the impression that as things got worse with MSA there was not much the neurologist could do. From our meetings with neurologists in the Netherlands and the UK, I understood that all that can be done is symptomatic treatment of the disease and that a good general hospital can cope with the problems that are likely to be encountered together with a team of physiotherapists, speech pathologists and urologists. We spoke to a GP recommended to us in Merimbula who confirmed that a good GP who understood the condition would help and that the local hospital would be used for breathing, choking and pneumonia problems and if they couldn’t handle the problem then the patient would be airlifted to either Sydney or Canberra. Another positive thing is that Merimbula has an airport with daily flights to each city three times a day.

    We have dreamt of building a house in Merimbula since before Bob was diagnosed and feel that the quality of life there would be stress free and relaxing. At the moment Bob is coping very well. He has balance problems but is still able to walk unaided and, except from the fall from his motorbike which heralded the diagnosis, he has not had any further falls. As yet he has no low blood pressure problems. He has to self-catheterize but manages this very well. Other characteristic symptoms are problems with fine motor skills, writing and slightly affected speech and he isn’t able to drive, ride his motorbike or play his guitar any more which is very sad.

    We are trying to decide whether to take the specialist’s advice or not. To give up on our dream feels like we are just waiting for Bob to get worse and worse and that the disease has won as we have given up on living our life. We have always taken risks in our lives having lived all over the world – we went to Zambia in 1972 when we were first married and then emigrated to Australia in 1977 and then lived in the US and Germany and the Netherlands (Bob was an IT Consultant, too). I actually grew up in Tadley (having moved from Cardiff when I was 5) which is only a few miles from Reading.

    I’ve taken a very long time to ask my question which is, “with your experience of the latter stages of MSA, do you think it is necessary to live in a big city close to research hospitals and a specialist neurologist, in order to cope with all the medical problems that are likely to ensue?”.

    Obviously, I am very aware that I cannot begin to imagine what this terrible disease is likely to do to Bob or how I will be able to cope so I will be very grateful for your thoughts on our plan to live so far from large cities and their facilities.
    Thank you for taking the time to read such a long email. I will look forward to your reply.

    Regards

    Rosemary Harle

  182. Heath says:

    Thank you

  183. Surfcoastwombat says:

    Heath – I have passed your email on to a couple of ladies in the US who administer several MSA support sites and groups including the Facebook MSA page which you can find at http://www.facebook.com/groups/MSAOZNZ/ (http://www NULL.facebook NULL.com/groups/MSAOZNZ/) .

    Another site to check is http://www.MSAawareness.org (http://www NULL.MSAawareness NULL.org)

  184. Heath says:

    I am sitting next to my father researching this terrible disease as he shakes uncontrollably and drifts in and out of conscious… He was diagnosed over the weekend however he has been ill for years they just couldnt explain why. Cosidering the rapid decline and severity of his symptoms now i feel now he is in the later stages of MSA.

    Although he has been very unstable on his feet recently and suffered some falls due to blood pressure, the past week has reduced him to a wheelchair and completely unable to stand. It has shocked us how quickly this has occured. Not only that but he is now often showing signs of dementia (especially when he wakes). This wasnt mentioned by the Dr and also has taken us by suprise.

    I know we are lucky to have had a wonderful kind man for so long and there is nothing that can be done, but as we try and take this in any advice or support would help especially my mother. We now have him home in Adelaide with constant family support trying to make him comfortable and less anxious as possible. However we have been told it will take upto 3 weeks for an under resourced disability SA to come out and look to help set up the house let alone get the things we need fitted etc.

    From reading peoples stories on here i am saddened deeply yet inspired to try and give my father similar support and love that you guys have shown to your loved ones. I am aware there is little if anything any of you can do but thank you for letting me get this out of my system and be inspired by your courage, that alone is enough…

  185. Rhonda says:

    Try to find out what your dad wants. If he wants to leave this earth, try to get it in writing from him that he doesn’t want intervention. If he wants intervention, this will happen as our medical institutions are set up to keep us living for as long as possible. Whatever his decision is, support him in it. All the best. PS, I was with my father when he died and feel very privileged that i was able to be by his side.

  186. karren says:

    my dad has msa we were told 2011 but the doctor said he was sorry to tell us he has this msa and he has had it a long time . since july this years 2012 he has gone down hill fast to sleeping all day and night only wakeing fo meds .he has had 3 chest infections with this one putting him in hosptail and on oxagen they have told us told he has blood clots on his lungs and are sending him for a chest scan next week last night he had a bad turn when trying to take his tablets which left him strugling to breath .his feet and ankles are starting to swell . i just dont know what to think my head is all over the place the dotors dont seem to know and the nurses . part of me wants this to be the end so he is not in pain but part of me wants it not to be . i just want to be strong but i am not …

  187. Vera James says:

    Bev ,
    Some patients have had trachs. My husband Fred had the stridor breathing early in his diagnose and a trach may of helped , but he wouldn’t agree with one. Unlike your stepson, Fred didn’t want to be resuscitated if his heart had stop.
    Have they done a swallowing test to see if a feeding tube is needed? These test show how they are swallowing and if a feeding tube is needed or what type of food is the best for them to have ( thickner etc). If they haven’t done one, I would suggest asking his doctor about having one done.
    My husband also had a hard time coughing up mucus. Some use a suction machine for the mucus that sits in the mouth & throat . I’ve heard that some patient use mucinex to help with break the mucus. This is something to speak with a doctor about.
    You may want to ask if they can show you how to do chest percussion. This is a lightly tap on the chest and back. The tapping loosens the mucus in the lungs and may help him to get the mucus up.
    These are just a few things that may help.
    Vera

  188. Bev garo says:

    My 54 year old stepson has MSA of the cerebellum. He has lived in a care centre for 3 years and was rushed to the hospital last week. He was vomiting ..some blood.. And thought to have swallowed something that stuck in his throat. He is intubated and it has been suggested he have a tracheotomy. He is very scared and wishes to be resuscitated if his heart stops. He is very weak and cannot cough up mucus from his lungs….hence the breathing tube. Despite being unable to do anything but think, he is desparate to live another day. He is also reluctant to have more medical procedures.
    His dad is 83 years old and bears all this stoically. How can I help?
    May God bless all who have been through this.
    Bev

  189. cathy wise (http://internetexplorer) says:

    Vera,

    I don’t want any “heroic” measures. I am not afraid to die(deep sleep ) but, I am afraid of being a vegetable. Don’t want to burden my kids or husband. It’s not fair to them. At least this isn’t genetic……..

  190. Surfcoastwombat says:

    Suzanne – thank you for your post and telling me about BrainLink – when I get back home from my holiday, I will include a link to BrainLink and if you would like to send me some relevant information, I will happily include that as well.

  191. Suzanne Lerene (http://www NULL.brainlink NULL.org NULL.au) says:

    My late husband passed away in 1998 after a 9 year long and horrific battle with MSA. He was 49 years of age with 4 beautiful small children and a devastated young wife. Back in the 90’s there were limited services and living out of the city, services were extremely scarce. The Neurologist was incredible to give us as much information as possible. At least now with the internet and services online, it is easier to navigate the system. Sad to see that research has still not come up with a cure as the devastation of a person’s life continues.
    I am now working as a Community Liaison Officer supporting families to bridge that gap of service when discharged from hospital to home or rehabilitation.
    One service that is working with Brain Disorders and Neurological Diseases is BrainLink. Check them out and add them to your directory. It’s a Statewide Service.

  192. Surfcoastwombat says:

    Hi Joanne

    My heart goes out to you at this very difficult time. The issue of a PEG is a very difficult one. Patricia insisted on having a PEG and that was her right to decide – no-one else’s. But after the event, I wish she hadn’t because it extended her life by about 15 to 18 months and by the time she finally passed away, her quality of life was zero – and had been for some time.

    I think if we had BOTH understood the pros and cons of PEG feeding – probably she may not have opted for a PEG.

    I suggest that you seek professional advice and have someone consult with both your father and family members re PEG or no PEG. Maybe the Sarah Matheson Trust could assist you in this regard.

  193. joanne west says:

    my darling dad cannot eat or talk now.This is a hellish disease and i intend to give support to all those who may need it when my lovely dad passes away.I am terrified of him having a peg but this is going to be suggested very soon.Ipray to God he will go to sleep and not wake up to experience the full term of this terrible disease.

  194. surfcoastwombat says:

    Hi Kate

    Sorry to hear about your partner. You are right to want to know everything – both of you need to – to be able to provide the best quality of care possible and do as much as you can while you can. I’m guessing from your IP address that you are in Melbourne so I strongly urge you to contact Bethlehem Hospital in South Caulfield.

    Cheers
    John

  195. Kate Greenway says:

    Today, John, the love of my life and partner, has just been diagnosed with MSAC. I want to know every thing.
    kate

  196. Tina says:

    Hi John,

    Reading your blog has bought tears to my eyes, the care and compassion you have showed throughout is amazing…

    My mum (now 62) was diagnosed approximately 18mths ago with MSA, after 2 years of specialists etc for some “unknown” symptoms.

    This past year has shown rapid deterioration so we believe this disease has gone un-diagnosed for possibly many years. In the past 8 months she has gone from still being fairly independent, her only aid has been a cpap machine for breathing assistance at night, driving, shopping etc.. normal things we all take for granted…. to now this past two months being in a wheelchair, unable to stand un-aided at all, speech is very mumbling, not being able to dress, eat, bathe without some assistance which is heartbreaking. Their home has been turned into a wheelchair friendly care facility where she now has an almost full time carer, physiotherapist, speech therapist, emergency button necklace, and then buttons in almost every room to call ambulances in case she is alone and falls…. which have seen some use already…

    The saddest thing about this disease I have found is the loneliness my mum has from losing her independence, I am in Australia, whilst the rest of my family is nearby to her in NZ they have work, families etc, so as much as they spend their spare time with mum, she has many lonely hours. She has a great support network but I can now really hear it in her voice that she is over it, I try and call daily but we don’t have a lot to talk about as her life is now on the couch watching TV so she runs out of things to say. I am fortunate I get to travel home at least 5 or 6 times per year, but the changes in between visits are now very obvious.

    Anyway I just wanted to say thank you for sharing your story and I hope with all the research that is being done overseas they find something to help this disease, its certainly not been a pretty ride so far, and I think we still have some way to go…

    Thank you
    Tina

  197. Vera James (http://www NULL.shy-drager NULL.org) says:

    Marianne,

    Many residential places are trying to learn about MSA. Look for some that work with Parkinson patients or ALS. These will know how to handle an MSA patients as it has a little of both these other disorders. You may want to contact the local hospital to speak with a social worker, as they may be able to suggest some place for you .

  198. Vera James (http://www NULL.shy-drager NULL.org) says:

    Cathy ,
    I agree with John no one does anything to cause this disorder. It’s just as they say bad things can happen to good people.
    I know there are things that can’t be done anymore, but try to find things that you can do that replaces the things you can’t. You mention you like to garden. Can you still pot plants sitting at a table or pick things off the plants if sitting down? My husband loved to garden and couldn’t get down to plant things , but could sitting and potting them . Which he loved to do. The thing is just to find what you can do and not give up living the life you still have.

  199. surfcoastwombat says:

    Hi Cathy
    If you do have MSA I very much doubt you did this to yourself. No-one knows why people get MSA but it is my belief that history will prove that it is caused by a “wayward” gene.

    Prognosis is generally believed to be between 7 and 12 years but can be less, can be more. The problem is knowing when it started.
    I hope you are in a good support group – if not – please try and connect with one.

    Take care
    John

  200. cathy wise (http://internetexplorer) says:

    Hi. I’m a 61 yr. old woman who has been diagnosed with “probable” MSA. I have been to 4 neuros.(looooong story) I walk funny, talk funny, write funny, no longer drive, have orthostatic hypotension. my fine motor skills are in the toilet, have urinary incontinance etc,. etc., but “feel” fine. I too, don’t want heroic measures, the Bible says there is going to be a resurrection of both the righteous and unrighteous, so I would rather die and “sleep” for awhile. This is no way to live. so, how long do I have to do this?? I’ve been searching for answers for 5 yrs. now, and JUST got a diagnosis. It is progressing, but, SLOWY. I still “furniture surf” in the house, but, use a walker when out. Can no longer garden, sew, quilt, walk, or cook. Maybe I did this to myself, why me? I am in great physical shape, take no meds. and certainly don’t look like some of those “train wrecks” out there. I am soooooo frustrated. Thanks for letting me vent, CATHY

  201. surfcoastwombat says:

    Hi Marianne

    I am guessing from your IP address that you are in the USA – probably in Texas – I’ll see if I can contact someone who may be able to offer you advice.
    Regards
    John

  202. Marianne Jones says:

    In 2005, I was diagnosed with Cerebellar Atrophy or OPCA. In August 2012, that diagnosis was changed to Multiple System Atrophy-C (by neuro-specialist in Ataxia.)
    I know first hand the frustration of tracking down info. via phone….my speech is hard to understand and the listener and I are both frustrated.
    I currently live in a retirement community and lead an independent life. However, MSA will progress and I want to be proactive now. I must use the internet (speech being what it is)….but I want to contact residential communities that are sensitive to needs of MSA patients.
    I have no family or caregiver. I want to make some good decisions, but I’m stuck!!

  203. Liz says:

    I have just read Patricia’s story and I can tell that you loved her very much. I have a friend who has been diagnosed with MSA and wanted to understand what was to happen. She is always bright and cheerful when I visit but sometimes the speech is a little hard to understand and she has all the usual symptoms associated with the condition. This is such a dreadful disease and I like everyone else wish there was a cure.
    Thank you for sharing
    Liz

  204. Karina Monaghan says:

    Thank you for setting up this page. I have referred to it throughout the past 5 years as my dad battled MSA. Sadly, he passed away last Saturday after fighting the disease since 2007. He was 67.
    It is such a horrible illness and my dad fought it with such dignity and strength, right up until the very end. I think the most frustrating thing for both him and the family was the fact that his brain was still functioning as if he was not ill. He could still speak and understand the French he learnt in primary school, could easily solve the most cryptic of crosswords and was up to date in all of the lives of his children and grandchildren. It was just that he was completely trapped into a body that refused to work. The highlight of our times together were those rare occasions when he would actually smile and laugh aloud, especially when one of his grandkids were being funny.
    Thank you again for this beautiful tribute to your wife and for keeping the fight and awareness alive in finding a cure for MSA.
    Karina Monaghan

  205. Jean Mitt says:

    Hi there,
    I have not had time to read all the previous messages due to a time restraint. My mum has been diagnosed with this disease. I am starting to see a serious decline in her health. When I get back from work tonight I will definitely give this site more time. THANK YOU for being a voice for this scary disease.
    my thanks,
    Jean

  206. Surfcoastwombat says:

    Kerrie – I am guessing from your email address that you are from the Newcastle area. There is an MSA Support Group page on Facebook for the Australians – if you go to: http://www.facebook.com/groups/MSAOZNZ/ (http://www NULL.facebook NULL.com/groups/MSAOZNZ/) and join up, you might find someone there in your area.

    Hope things turn out ok for you.
    Regards JC

  207. Kerrie Bissett says:

    Thank you for your website. My Mum had undiagnosed MSA for years, coupled with anxiety as your Patricia had over the years. I have been very disappointed as Mum (Elaine) had orthostatic hypertension and instability for years, was under the care of a geriatrician and had many many tests and was undiagnosed for maybe up to ten years. It was only her aged care facility GP who identified MSA last year. Fot the last 18 months Elaine has been in a water chair in the aged care facility, and has been taking thickened liquids. The facility manages her condition very well and they are a great support for me. I am on only child and Elaine has always been very emotionally reliant on me. One additional symptom that may be unrelated to MSA that Mum has is some sort of epilepsy or episodes of vacant stares and mumbling, though conscious. I can recall this happening squally when Mum was stressed, for decades. These episodes are increasing. I am writing this in Canada as I took the bold, and maybe unwise, decision to visit my husband who is working here for 6 months. I was told yesterday that Mum had a very bad turn yesterday and I am awaiting further news, in case I need to turn quickly home. I am filling in time while awaiting news (time difference!) and stumbled upon your website.

  208. Surfcoastwombat says:

    Hi Leonard

    You are so right – no-one should have to suffer in this manner.

    Yes – everyone progresses differently, but sadly, not so differently. It basically come down to which form of MSA your wife has. I suspect you are in America – Ohio perhaps – have you contacted the Shy Drager support group there – http://groups.yahoo.com/group/shydrager (http://groups NULL.yahoo NULL.com/group/shydrager) – they are very supportive and have a wealth of information.

    Feel free to continue to email here if it helps.

    Regards
    JC

  209. Leonard Visconti says:

    I read the entire blog. Thanks you for providing it. My wife was diagnosed witht PD in Oct ’08, but it soome became apparent it was something else. Eventtually it was decided she had MSA. She must use a 4-wheel walker, or she falls. She has had a few swallowing episodes (of which I’m aware) a,d is starting to have some congintive issues as well. She is now 54, and I am not sure what to expect as everyone progresses differently, but her symptoms seem to be coming more rapidly as of late.

    I feel so bad for her — no one should have to suffer in this manner.

  210. Vera (http://www NULL.shy-drager NULL.org) says:

    Hi Marilyn ,
    In the case of MSA a doctor can only give you a possible or probable diagnose, a definitive is only pathologically confirmed. Seeking another opinion will also only give you these same possible or probable diagnose if they feel it is MSA.
    MSA can have the symptoms of Parkinson but has a fast progression compared to Parkinson. The swallowing and weakness can be part of the MSA symptoms. Doctor’s who treat MSA , treat it with the same medications that most Parkinson patients are treated with.
    I know it’s hard for both you and your husband to be ill and both with a PD & a PD+ type of illness, but in most cases what you are doing for your care , will also be the same for your husband.
    Watch for infections pneumonia or Bladder (UTI’s) and see that those are treated right away.
    If you haven’t joined the shy-drager yahoo group
    http://health.groups.yahoo.com/group/shydrager/ (http://health NULL.groups NULL.yahoo NULL.com/group/shydrager/) . You will find that helpful and depending on where you are in the states, there are region support groups on facebook with other’s in your same area.
    As I can see you are doing a very good job in the care of your husband ,while facing an illness yourself

  211. Surfcoastwombat says:

    Hi Marilyn

    My heart goes out to you – you really have drawn the shortest of straws. Firstly- I have moved your original post to this page as it is more appropriate. In answer to your question re Bethlehem Hospital – it is in Melbourne, Australia. A quick check of your email address properties tells me that you are in the USA.

    There are some excellent support groups in the USA run by wonderful people. Someone there will pick this post up in time but I am taking the liberty of forwarding your post on to a lady called Vera James whose late husband had MSA.

    Feel free to continue to post here and ask questions.

  212. Marilyn de Pano says:

    Where is Bethlehem Hospital?

    My 75 year old husband has MSA. He is now unable to talk and seems to get weaker each day. Since I have Parkinson’s Disease, I had to hire a caregiver to help me take care of him. I am so sad to see him deteriorate before my eyes. He does not complain, but just sits on his recliner and watches TV all day. His swallowing is now being affected – so I give him thickened liquids. However, he is still able to eat soft foods. I would like to know if I should seek another opinion about his illness. Maybe it is denial on my part, but I would like to know where I can take him for further treatment and care. I don’t want to give up. I am slowly losing my balance – however, I take three pills/3 times a day = levadopa/carbidopa, reprolenol, and amantadine for my PD. Am often depressed. We have a lot of family support but not on a regular basis. Children visit as often as they can. Please help me.

  213. Vera James (http://www NULL.shy-drager NULL.org) says:

    Eileen,

    As of now they still don’t understand the cause of MSA. From what I have seen on polls that have been taken with patients on the different forums like the Yahoo group. Not all patients seem to have the same thing in common regarding certain occupations, childhood illness or head traumas etc. So as it seems the cause maybe more then just one thing or is different depending on the patient.

    MSA is still a rather young illness as only being named Shy-drager in 1960 by Dr’s Shy & Drager. In 1987 there were only 4 doctors that seemed to be interested in MSA, as of 2011 there are now over 198 doctors that are.

    Before 1987 there had only been 5 articles published on MSA, between 1987 and 2011 there has been over 3127 articles published on MSA. So as it seems it is not widely recognized, it is becoming more and more.

    When my husband was alive and living with MSA in 1998 I can only think of one trial that was going on for MSA. In the last year or so I have seen 3 just in medications and more and more funds are going towards MSA research.

    MSA has kept it’s head in the sand, but hopefully it will give more of a view of what it is.

    Vera

  214. Trish Fleig says:

    Ashlene,
    I’m sorry to hear about your dad. The good thing is he is no longer suffering. My mother suffers from this aweful disease as well. She is in the late stages and I pray every day that god give’s her a period where she can talk to whom ever she wants effortlessly (she can’t speak at all anymore) and her suffering will ease.

    We did finally figure out a way for her to communicate and has seemed more relaxed in the past week or so. The family knows she will receive her wings before to long.

    I hope you and your family are doing well.

  215. Eileen Fleming says:

    Hi

    I wonder if there is someone out there who can help me…? Does anyone have any information to the cause of MSA? My mother in law has been diagnosed with Parkinson’s, but after living with her for a week, her symptoms are too far advanced and I am convinced she has MSA. She worked in Cotton mill from the age of 15 as a weaver. The cotton was from India, where they treated the fields with Dichlorodiphenyltrichloroethane, (DDT). I know they’re has been links with pesticides and neurological illness’s. My mother in law’s sister worked in the cotton mill also, and she has been diagnosed with dementia.

    Has anyone got any information or suspicions, regarding research into certain occupations, in relation to developing MSA?

    I feel there must be a reason why MSA isn’t more widely recognised, and researched.

    Thanks for your help.

    Eileen

  216. Eileen Flemming says:

    Hi harriet, your story is very sad, (See post below – 9 May 2012 – 11.04am) I do hope he is getting the help he deserves. This is probably just a coincidence, but my mother in law had a hip replacement operation four years ago. She too struggled to recover. Last year, she was diagnosed with Parkinson’s. My husband and I took her away on holiday last week. and after spending the week with her, and checking her symptoms, I really believe she has MSA. Her symptoms have progressed rapidly. She struggles to dress and walk and even in 30 degree heat, she felt cold to the touch. She stares, and goes dizzy and randomly cries, her speech is monotone almost a mumble. Does anyone know if the medication for Parkinson’s is different to MSA? Should I intervene and speak to her doctor?

  217. nari jamieson says:

    Thankyou for answering Vera. Think it helps emailing someone who knows exactly what its like…. can anyone else give me some more hints to cope with life with MSA…. ta…

  218. Pamela Wells says:

    Once again, thank you

  219. Vera James says:

    Ashlene, I’m sorry to hear that we have another MSA Angel. My heart goes out to you and your family at the loss of your father. Our prayers are with you.

  220. Surfcoastwombat says:

    Very sorry to hear your news, Ashlene. At least a good man is no longer suffering and is at peace. Good luck for the future. John

  221. Ashlene says:

    Thanks so much for your help Vera. Unfortunately my dad passed away from this horrible disease yesterday, but he fought long and hard enough and was a man of pride and it was killing him to go out this way. Thanks to all who made this site as it took a lot for me to finally comment but I have viewed this site many times for answers.

  222. Vera James says:

    Nari, My husband was diagnose about the same age you are. He was always very independant and hated to ask anyone for help. I was his carepartner 24/7 and he always worried about me having to care for him. To be honest my caring for him didn’t start with his diagnose, it started when I married him. Fred wasn’t any less of a person because he needed some help. If anything he was far stronger because he face an illness that I am not so sure I could of handle in the way he did. My love for him grew and he never gave up. Things that he could no longer do, he found other things he could do. He also loved to garden and couldn’t get down in the garden the way he had, but he still was able to help while in his wheelchair pot flowers and veggies or pick the veggies or flowers that he could reach while he was in his wheel chair. He did what he could and didn’t worry about what he couldn’t do. Infact most of the time he would joke about what he couldn’t do any longer.
    I wouldn’t wish him to be ill again, but if I had to do it again I would care for him the way I had. We looked for the blessing each day.
    You may find joining the other sites for MSA will help you to find friends who understand how you are feeling and be a support also. Besides John’s here there are other’s and one just set up for those in Australia and NZ is on facebook. I notice there was one person who was asking about doctors in the Adelaide area. I listed John”s site to her, so that she may come to this site also. If you should want to join that group also the site is https://www.facebook.com/#!/groups/MSAOZNZ/ (https://www NULL.facebook NULL.com/#!/groups/MSAOZNZ/) . Just know that your not alone, there are others who know how you are feeling here. Some of my best friends are people like John who has this site. I have never met him in person but he has been my friend for many years now since I found him in 2000.

  223. Vera James says:

    Ashlene, The drop in Blood Pressure is a symptom of MSA it’s called orthostatic hypotension. It can drop when they stand up or when they get up out of bed. Drinking water will help bring the blood pressure up, but there are also medication that can help. Those you would have to ask his doctor about. Things that may help with the drop is to eat smaller meals 5 or 6 times a day instead of the 3 larger meals. The blood goes to the stomach to help digest the food and the larger the meal, the more blood goes to help digest and away from the head were you want it to be. There is a site that is about this problem that you can view at http://www.signsofnoh.com/ (http://www NULL.signsofnoh NULL.com/)

    Fatigue is also another problem that seems to happen. This is because most patients won’t go into the REM sleep and they acted out their dreams. This can make them very fatigue so many will sleep for long periods during the day.

    Many patients don’t have the normal body temp that you or I would have. It can run a few degrees lower. If this should be the same with your father, then if it happen to go to the degree that is normal for you, then it could be a low grade temp and showing that there is an infections of some kind. Infections could be a UTI (Bladder) or pneumonia. These can cause some symptoms to because worst until they are treated.
    I found with my husband sometimes you have to be a little pushies (but in a nice way )with the doctors to get them to do things .
    There is a site written by doctors on MSA that list different medications to treat different symptoms. It is written by doctors in the USA, but you may still want to read it and learn more on this disorder. I believe the more we know as carepartner , the better we are armed when we go to the doctor. The site is http://emedicine.medscape.com/article/1154583-overview (http://emedicine NULL.medscape NULL.com/article/1154583-overview) . It is 35 pages or so , but worth reading.

  224. Ashlene says:

    Hi, my dad was diagnosed with MSA approx. 5-6 years ago. He currently just progressed to not being able to walk at all, and has recently found it even too hard to stand with assistance. We have recently been given carers that come for the lunch time session as my mum is still having to work, and he has doctors at Bethlehem hospital as well. However I feel you received more help through Bethlehem than we have. Each time we go in there they see him for about 5 mins and write down his progressions and say its just the next stage. And as you know it takes a whole lot more effort to get him in there than they are spending on him. Do you have any helpful ideas on how you approached them. I know nothing can really be done, it’s just hard to take that as an answer. The main reason for my comment is that in the last 4 days he has deteriorated severely. He is very sleepy and when we stood him up he blacked out and took a bit to catch his attention. Is this part of the disease or could it be something else eg:dehydration or blood clots. Obviously we are very worried and no one seems to understand.
    Thanks,
    Ash

  225. nari jamieson says:

    I am a 55 year old woman, and first noticed something was wrong in 2004. After all this time I’m finding my prognosis hard to accept. I was always very independant as my husband was away a lot.
    We gave up work, sold everything, cos my husband was finding it hard to do it all. We live south of Adelaide in South Australia. Even tho no-one ever complains, I find it hard to ask for help… I am in a wheelchair; feel I have most symptoms… I do feel rather alone…
    I suppose I feel sorry for myself, cos now I have trouble doing the things I like – camping, jigsaws, crosswords, gardening, reading, talking etc…. Hmmm

  226. Sharon Taksler says:

    Thank you for writing Patricia’s story. It has provided me with valuable insight to this disease. A cousin of mine is going through this and part of the problem is that he doesn’t want any heroic measures taken, but his family isn’t ready to let him go. Thank you for being able to tell Patricia’s story.

  227. Vera James says:

    Hi Angela – Just being diagnosed I can understand your being scared and having many questions. The ones you have already “How -When- Why? still have no answers that researchers have found yet. They are learning more about MSA but these are still unanswered.
    Beside this forum that John has , there are some other ones set up that you can join where you will find others who are either diagnosed with it or are carepartners to a loved one that has been diagnosed. They are shy-drager online yahoo group , it has over 1500 members on there from all over the world http://health.groups.yahoo.com/group/shydrager/ (http://health NULL.groups NULL.yahoo NULL.com/group/shydrager/) another one that has only been started a few months ago is a facebook site for those who live in Australia & NZ https://www.facebook.com/#!/groups/MSAOZNZ/ (https://www NULL.facebook NULL.com/#!/groups/MSAOZNZ/) . Last the Parkinson Victoria group is involved with MSA & PSP patients and maybe able to give you pamphlets on the disorder or may know of support meetings where the patients attend with MSA – this is their link http://www.parkinsonsvic.org.au/our-services/support-groups.htm (http://www NULL.parkinsonsvic NULL.org NULL.au/our-services/support-groups NULL.htm).

    I’m not a patient but like John who has this site I was a carepartner to my husband Fred who was diagnosed with MSA. I also help with the SDS/MSA Support Group in the USA . Know your not alone , you have many here that understand.

  228. Surfcoastwombat says:

    Hi Angela – I have moved your post from the “First Signs” page to the Comments page where it belongs. Firstly – I am guessing you are in Australia – whereabouts are you located?
    Regards
    John

  229. Angela Pauline Smith says:

    I was diagnosed with MSA about a week or so ago. I am still walking (albeit unsteadily) and driving. I am very scared. Can you help me? Is there a group I can talk to to allay my fears. I have so many questions. How? When? Why? Angela

  230. Vera James says:

    Harriet, it’s hard I know to see your brother failing and not getting what is needed to help. It is hard to understand why medicare disability recognize ALS and the patient can get the health care within a year , where other types of illness like MSA has to wait the 24 months. Maybe some day that will change when they understand more what MSA is about.

  231. Harriet Giordano says:

    My brother was diagnosed with Parkinson’s 2 years ago. After a Hip replacement that was hard to recover from, he lost bladder function and then was told he had MSA. He has gone downhill too quickly. He fell last month and broke his other hip. Rehab wants to stop therapy because he’s weak and send him to nursing home.
    Why doesn”t Medicare disability recognize this disease as serious as ALS or renal failure and start medicare as soon as the person is disabled. He’s only 61 and had to wait 25 months. His wife has to work and there is a financial strain on family.

  232. Surfcoastwombat says:

    Once Patricia was “correctly” diagnosed, her Neurologist said that the normal prognosis was a duration of between 7 and 12 years. The problem was – working out when it started. We settled on a date when we thought we first noticed that something was wrong and Patricia went for about 13 years after that date.

    However – if she had not chosen to have a PEG, she would not have survived anywhere near as long as she did. When the staff at Bethlehem Hospital recommended that Patricia stay there permanently rather than go home after a respite care visit, it is my belief that they believed she only had 3 months to live at best. But a combination of a strong heart, an even stronger will and the PEG saw her survive for 15 months before she passed away.

    It is very difficult to estimate – the best person to give you any idea is your mother’s Neurologist.

    Regards
    JC

  233. Pamela Wells says:

    Can you tell me John the duration of life for Patricia after diagnosis? As quickly as my mom is declining we want to be as prepared as possible.

    You’re right, she has had 62 wonderful years.

  234. Surfcoastwombat says:

    I’m sorry to read of your struggle but at least your mother has had 62 years of life to enjoy and I know that those of you who have cared for her will be the richer for having done so – in time.

    Regards
    JC

  235. Pamela Wells - Michigan, USA says:

    I just recently contacted John regarding my mother’s diagnosis of MSA. I found this website to be the most informative for me and my family so we could prepare in advance to what is to come. My mother is only 62 years old and was initially diagnosed with Parkinson’s Disease a couple of years ago but just recently re-diagnosed with MSA. Having been through my father in law’s illness with Parkinson’s I knew my mother’s illness had to be something different.

    My mother is at the stage now where she cannot walk on her own and we are now looking at wheelchairs. Her speech is becoming more difficult to understand and her activity is now limited to just getting out of bed to use the rest room or sit in a chair in the living room. To watch her decline so rapidly is almost unbearable and we all feel helpless. My mother is fully aware of what is to come and depression has fully set in. We are trying our best to give her the best quality of life we can but struggle between wanting her to live and be with us for many more years but then pray it goes quickly so the suffering ends. We are in shock how quickly she is deteriorating.

    Thank you John for this website. It has been helpful to be able to compare your story with ours and gives us some insight on how to handle the changes as they come. I know how difficult it must have been to share your story such as you did but it has benefited my family tremendously and for that I am thankful. God Bless

  236. gerhard richter says:

    My wife had MSA but she passed away 6 months ago, as she contracted pneumonia and and her body could not fight back as she was too weak. I cared for her at home it was a hard job but she was better at home then in a nursing home. It was bad enough to put her in there for respite. John I contacted you maybe 1 and 1/2 year ago, and your webside was very helpful. I don’t know wat else I can write except that my wife is in a better place. MSA is dreadful disease and one can hope that they find a cure for it.
    Kind Regard
    Gerhard Richter

  237. Jillian Gibbens says:

    My mum has been suffering this disease for almost 10 years and my dad has tried to take it on all by himself for most of it. My whole family have read your webpage in dedication to your wife, Patricia. It did help us to understand what mum and dad were in for and helped my siblings and myself to understand the disease and how we would adapt to it.

    Unfortunately now about 8-10yrs in we are currently about to lose my mum, Margaret to this horrible disease as she is now in palliative care due to internal complications – all the whole digestion system is failing and parts of it dying. Margaret was a nurse and was very against the PEG so we respected her wishes although not always agreeing to it but it was her decision to make. We have been told they can’t operate or do anything for her except palliative care; we’ve been warned that she may not survive the next 3 to 4 days.

    The reason I felt I needed to write to you was to let you know to keep this website going as I had to refer my bosses to this page to understand what my family was going through as since hardly no-one knows about this disease and the lack of quality of life the patient and the carer have. As being a single parent, I needed to rely on my parents to assist me so I could work even though they were going through all of this. Your webpage had assisted me with explaining this, as unless you say cancer, no one understands until it affects their life.

    I thank you for it and am very sorry that you had to go through the same. But you did help my family understand what we were up against.

    I hope they find the cure one day but at least more research is getting started now than what there was 10yrs ago.

    All the best.

    Jillian Gibbens