I tend to reply rather than post. This is because I was my late husbnd's carer for 8 years and by the end of that time I knew a lot about MSA. I think it must be awful to post and not get a reply even if it is just Hi!
I found the MSA Trust (MSAT) Forum and the MSAT information sheets got me through together with the amazing MSAT nurse specialists and I want to say thank you for all the help and support I had by helping in any way I can.
I also run the Hertfordshire Support Group which meets at the Hospice of St Francis in Berkhamsted. (details on MSAT website)
Freda
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FredaE
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Hello Freda - I am replying because as you say it's awful to post and then not get a reply! But seriously I think all of us within this community would say 'three cheers for the MSA Trust'. I remember well the words of the neurologist the day Jax was diagnosed, "you may find some useful information from the MSA Trust". Little did we realise how important their help would become.
I think the point you make about the knowledge you built over 8 years as a carer is so important. I have learnt so much from this and the sister PSP community. The help has been so useful in the journey Jackie and I are on together. Thank you for your support which we see so much of. Take care, Ian
Hi Freda. Sorry that it has taken me so long to acknowledge your post. I have always found your posts on here and the MSA trust forum so knowledgable and supportive - I was a long term reader of others posts before I ever wrote anything so was following when your husband was still alive. We are 4 years from diagnosis now so part way along this road which most days is OK but occasionally is overwhelming for a few hours.
We also have found such help from the Trust and Katie Rigg and I am involved in running the Greater Manchester Support Group. I hope I am still as positive and strong when I am in your position.
Nearly three years after Victor's death I am beginning to understand that some good has come out of it all.
I am stronger than I ever beleived possible and as a result of learning to sweet talk all sorts of medical people into doing what they really did not want to do because I knew it was the right thing, I have developed a gift for salesmanship which I can use among other things to coax money out of people's pockets as a Hospice ambassador.
Not what I would have chosen. I would willingly paint myself from head to foot with creosote and wallow in a bath of semi-decomposed hedgehogs if it would bring him back as he used to be - but - life doesn't work like that does it.
I have now a second chance and it would be wrong not to take it and to make the most of the time left to me in any ways possible.
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