Living with Multiple System Atrophy. A life limiting, neurological brain disease.


If you would like to read more about what we write then click on the follow button on the right and pop your email address in and you’ll get our latest blog in your inbox!

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If you want to contact us here

You can find us on facebook

If you’d like to help people with MSA and support the MSA Trust to find a cure you can donate here

Finally, for more information about Multiple System Atrophy (MSA) click here

Sam, Rhanna and Andy


9 responses to “contact

  1. serenity1404 says:

    New blog looks fantastic, Holdingontohope that a cure will be found ❤

  2. Colin ketteringham says:

    Hiya I’m Colin Ketteringham, I have MSA and was given 3years to live,but it’s seams to be progressing faster at the moment.
    I received a letter yesterday they want to put a feeding tube in my stomach to stop me chocking when I eat.

    • Anne Lewis says:

      Colin. Prayers your way. My husband said he did not want the feeding tube, but we found out a new grand baby was on the way. He said yes finally. I believe this kept him here with me for another 2 1/2 years. He passed May 7 2012 . I was grateful for everyday I had with him, and to watch him watch the new grandson was priceless.

  3. Sioux says:

    What an inspiration you and your family are, my Dad had MSA so I know the difficulties involved but without fantastic people like you the world will never know how awfull this disease is. I am in awe of you xxxx

  4. Chris. Peart says:

    I thing you ar very brave. I was diagnosed with MSA 4.5 years ago due to change of doctor.Execent amount of money you have raised £6000. We have raised £3000 so far, it all helps. Chris Peart.

  5. roseli zamarchi says:

    Hi Sam, Rhanna and Andy.
    Just read the Daily Mail .
    My father have Msa, actually a few months ago he was diagonosed with it.One the nerologist thought he had Parkinson’s, but when he was speaking to a professor on a conference she said the symptons are the Msa. He faint many time a day (he lives in Brazil). He takes a tablet licensed in Usa for the blood pressure.It’s very expensive.
    Wish you Sam and family all the best.
    Happy new year. And keep fighting.

  6. Hina Khalid says:

    You are a true inspiration – may God bless you and your family and keep you strong through your hardship. An amazing family with tremendous courage, I am praying for your Mum, my thoughts and sincerest wishes are with you always xx

  7. Stacey Binns says:

    Hi Sam, Andy & Rhanna
    I also read your article in the Mail, and having lost my mum, aged 44 in 1990 (Encephalopathy of an UnKnown Nature) when I was 19, my brother was 13 & dad was 41, I can see a lot of similarities between yours & my mum’s symptoms. Maybe she had the same? We’ll never know, but I’m going to show dad your article soon.
    Again, what an inspiritation your truly are, brave beyond words, I’ll be following your blog with interest, love & understanding…
    Prayers & Heartfelt Wishes To You All…
    X X X

  8. Dear Sam, Andy & Rhanna: My husband has a parkinsons plus illness and I don’t understand what is happening to him. Please write back and answer this question: Do you ever experience pressure in the back of your neck? What about pressure in the back of your head? What about pressure on the top of your head. My husband gets all 3. I really worry about the pressure he feels in the back of his head and on the top of his head. His left arm was feeling very weak today and we went to the doctors together. No sign of stroke, we were told. Two weeks ago, both arms were very weak; he couldn’t put his pants on for about 2 to 3 days and then the symptoms eased and he could dress again as before. Before, both arms; then symptoms receded; now, one arm i(the left) s growing weaker and harder to control than the other. Are these symptoms of pressure in the head familiar to you. I hope for your response. Cindy Carlson.

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