Comments for Multiple System Atrophy http://surfcoastwombat.com Sat, 19 May 2012 07:18:29 +0000 hourly 1 http://wordpress.org/?v=3.3.2 Comment on Comments by nari jamieson http://surfcoastwombat.com/looking-back/#comment-60 nari jamieson Sat, 19 May 2012 07:18:29 +0000 http://surfcoastwombat.com/?page_id=160#comment-60 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 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

]]> Comment on Comments by Sharon Taksler http://surfcoastwombat.com/looking-back/#comment-55 Sharon Taksler Wed, 09 May 2012 20:31:22 +0000 http://surfcoastwombat.com/?page_id=160#comment-55 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. 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.

]]> Comment on Comments by Vera James http://surfcoastwombat.com/looking-back/#comment-53 Vera James Wed, 09 May 2012 15:39:47 +0000 http://surfcoastwombat.com/?page_id=160#comment-53 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/ 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/ . 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. 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. 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/ 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/ . 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.

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.

]]> Comment on Comments by Surfcoastwombat http://surfcoastwombat.com/looking-back/#comment-52 Surfcoastwombat Wed, 09 May 2012 11:19:50 +0000 http://surfcoastwombat.com/?page_id=160#comment-52 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 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

]]> Comment on Comments by Angela Pauline Smith http://surfcoastwombat.com/looking-back/#comment-51 Angela Pauline Smith Wed, 09 May 2012 07:35:52 +0000 http://surfcoastwombat.com/?page_id=160#comment-51 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 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

]]> Comment on Comments by Vera James http://surfcoastwombat.com/looking-back/#comment-49 Vera James Wed, 09 May 2012 04:44:35 +0000 http://surfcoastwombat.com/?page_id=160#comment-49 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. 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.

]]> Comment on Comments by Harriet Giordano http://surfcoastwombat.com/looking-back/#comment-48 Harriet Giordano Wed, 09 May 2012 01:04:44 +0000 http://surfcoastwombat.com/?page_id=160#comment-48 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. 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.

]]> Comment on Comments by Pamela Wells http://surfcoastwombat.com/looking-back/#comment-44 Pamela Wells Thu, 26 Apr 2012 23:48:43 +0000 http://surfcoastwombat.com/?page_id=160#comment-44 Once again, thank you Once again, thank you

]]> Comment on Comments by Surfcoastwombat http://surfcoastwombat.com/looking-back/#comment-43 Surfcoastwombat Thu, 26 Apr 2012 22:48:12 +0000 http://surfcoastwombat.com/?page_id=160#comment-43 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 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

]]> Comment on Comments by Pamela Wells http://surfcoastwombat.com/looking-back/#comment-42 Pamela Wells Thu, 26 Apr 2012 12:22:16 +0000 http://surfcoastwombat.com/?page_id=160#comment-42 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. 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.

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