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 8 years ago by Debbie Templeton.
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  • #1279
    Debbie Templeton
    Guest

    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

    #1283
    geraldine rose
    Guest

    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

    #1285
    Debbie Templeton
    Guest

    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

    Look forward to hearing from you.:)

    #1280
    Rick Edwards
    Guest

    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.

    #1282
    Rick Edwards
    Guest

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

    #1281
    Debbie Templeton
    Guest

    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

    #1287
    Pam Bower
    Guest

    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

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

    https://www.facebook.com/groups/MSAOZNZ/

    #1284
    Lisa
    Guest

    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 .

    #1286
    Karen
    Guest

    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

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