Home › Forums › Surfcoastwombat’s MSA Forum › MSA-P and we are still struggling to process this information
- This topic has 8 replies, 1 voice, and was last updated 9 years ago by Debbie Templeton.
June 1, 2014 at 11:20 am #1279Debbie TempletonGuest
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) – JCJune 1, 2014 at 1:33 pm #1283geraldine roseGuest
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, GRJune 2, 2014 at 8:54 am #1285Debbie TempletonGuest
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.firstname.lastname@example.org
Look forward to hearing from you.:)June 3, 2014 at 6:57 pm #1280Rick EdwardsGuest
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.June 4, 2014 at 4:46 pm #1282Rick EdwardsGuest
Hi Debbie, I think my wife Sue has made contact with you.June 7, 2014 at 12:39 pm #1281Debbie TempletonGuest
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
DebbieJune 10, 2014 at 4:06 am #1287Pam BowerGuest
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 email@example.com
You can also find Linda and others on the MSA Australia and New Zealand facebook group.October 11, 2014 at 2:20 pm #1284LisaGuest
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 .October 18, 2014 at 10:48 pm #1286KarenGuest
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.
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