Keen to support newly diagnosed MSA patients

[janehey]

This is my third attempt!

My lovely husband Chris was dx'd with MSA in 2014, although he had had symptoms of autonomic failure from at least 2010. Photo is from 2011.

It was a scary time: I gave up work and we really went all out to make as many happy memories as we could, given the constraints of the illness. Chris died at the end of May 2016, peacefully and at home.

When we first got the diagnosis, it was very frightening: I am happy to talk to anyone who has had a recent diagnosis, or their partners/offspring

[Yanno]

Third time lucky! I'm glad you managed in the end

[FredaE]

There is a patient's forum on the MSAT(Multiple system Atrophy Trust) Plenty of people looking but not so many willing to take the plunge and post. With a rare disease ike MSA just the fact that you are there is a help to other members although to be able to share is even better. Whatever you want to say is important.

I found the MSA forum a huge help when Victor and I were fighting "the beast". MSA varies so much from one patient to another that to be able to share with someone else trying to cope with the same problem is brilliant.

Since victor died in 2014 I have been supporting the Trust and I now run the Hertfordshire Suppport Group which meets 4 times a year to provide information, social contact, support, a few laughs and a lunchtime snack

[Yanno in reply to FredaE]

Hello Freda

I have been very supportive of MSA Trust coming on to this web site as one is able to join a number of communities which is useful. I have followed the PSP and Parkinson's communities before MSA-T were here and would hope that this one will become as vibrant as the PSP one has been.

I would encourage anyone to join in - I was one of those 'people looking' in the past but realise the more of us who contribute, the more others will join in.

Take care, Ian

[FredaE]

Hello,

the above are still very true. Please post even if you don't think your contribution is very valuable..just saying Hi helps other people to feel less alone with this hideous disease.

FredaE

[Teresa5]

I have not had it long live on my own but they say my spreach is going but swallow is there at moment now worried what to do

Husband of 30 years died 5years ago he was 52 and it was not expected

[Lynnieherbert in reply to Teresa5]

Hi Theresa, this came up on My news feed this morning. I have just joined the site, my brother being diagnosed in 2016 but been having symptoms for 4 years. Just wanted to say He!lo and wondered how you are x Lyn x

[Teresa5 in reply to Lynnieherbert]

I am fine thank you c

[Ballymoe]

Hi so sorry for your loss. My dad was diagnosed a few months ago and is really struggling. They were treating him for Parkinson’s but we now know it’s MSA. Any tips you can give would be so helpful