[Goosegirl]

Just to let you all know my dear husband has MSA (multi-system atrophy) and is now having palliative care. His has elements of Parkinson's and there is a website that is very informative, plus it has a forum! Just wondering how I can publicise this condition which has such a rapid development that kind of took us by surprise as it were. So much has been said in the news about MND and Parkinson's disease but not about this. Any suggestions would be much appreciated, bearing in mind that I don't drive and only go out to our local village shop when I need to.

[Aunt Sally]

There are some MSA groups on Facebook.

[Kleftiwallah]

Good morning Goosegirl,
(well as good as it can be under your sircumstances).
I'm very sorry to hear about your husband, I sincerly hope he (and yourself) are coping with the struggle.

I just hope evrything is as well as it can be.  Cheers,  Tony.

[Aunt Sally]

There are quite a few ideas on the MSA web site.

https://www.msatrust.org.uk/whats-new/msa-awareness-month/#:~:text=Multiple%20system%20atrophy%20(MSA)%20is,during%20the%20month%20and%20beyond.

[Growster...]

I'm so sorry to hear this, Goosey!

This must be a rotten time for you both and I sincerely hope that the MSA forums and Trust can help in some way!

There's alway us lot to chat with too of course!

Mx

[AndyRVTR]

I too am so sorry to hear the news about your husband GG.. hopefully you'll find the support you both need..

[New shoot]

Sad news indeed and an awful situation for you both to have to deal with.  I hope you are receiving a lot of help and support to get you through.

Is there anyone else on the MSA forum you could assist.  You did some work putting together guides for a site of historical interest where you used to live didn’t you (forgive me but I can’t recall where exactly). Could you help someone else in a fund raising event by putting together material to hand out? 

[jaydig]

I'm so sorry to hear your news GG. Nothing can ever prepare you for news like this and it leaves you feeling rather helpless for a while.  Unfortunately I can't offer any insight into MSA, but I see that several others have made suggestions about where you might get more information and hopefully you will get the information and help that you and your husband need.  If you don't, don't be afraid to push for it and even, sad though it is to say, shout, if it isn't forthcoming.  There are a lot of excellent people in our NHS, and I am grateful to so many of them, but there is always an element that sometimes needs pushing hard at just the time that you feel least like doing it. I wish you all the very best and don't forget we're all here for you if you need us.  Big hugs from Jan x
 

[Hampshire Hog]

Not sure I can add much to what has already been said GG.
Personally I had heard of this disease but I’m sorry that your husband has been diagnosed with it. It’s clearly an unpleasant condition I’m afraid. 
As to publicity you have already achieved something by mentioning it here.
I’m sure we will all be thinking of you as you support your husband at this difficult time. HH

[snowdrops]

Oh GG, I’m sorry to hear this sad news. My heart goes out to you both. As for what you can do…play to your strengths but just be careful to take the time you need to look after yourself so you can visit & care for your husband in the coming period.

[Goosegirl]

Oh, thank you all so much for your lovely comments. What would I do without you lot!
He has set his heart on a nursing home in Lancaster called Laurel Bank and there's someone coming to see him today about him possibly going there.
I printed out some pics for him to look at and remember the good times and he said he'd like a photo album with them in because he finds it difficult to separate them with his fingers, so that's a project. Another one it choosing some emulsion paint for the hall and kitchen, so I've just stuck up some painted samples on paper with Blu-Tak. I need to look at them in different lights then I can make a final decision.

[wighty]

I don't know what to say other than what others have already said.  The palliative care course was one of the hardest to study that I had to do.  My best wishes to both of you, stay strong.  With much love and the very best of wishes from here, from both of us.

[Yorkie]

Just adding my very best wishes to you and your husband, GG x

[Subversive_plot]

GG, it looks like some of our members here have some knowledge they have been able to share about MSA, and I'm thankful for that. Although I don't have insight to offer on MSA, I am very sorry to hear of your husband's diagnosis, and my best wishes go out to both of you.

[Goosegirl]

Sad news indeed and an awful situation for you both to have to deal with.  I hope you are receiving a lot of help and support to get you through. Is there anyone else on the MSA forum you could assist.  You did some work putting together guides for a site of historical interest where you used to live didn’t you (forgive me but I can’t recall where exactly). Could you help someone else in a fund raising event by putting together material to hand out?

Yes, I wrote an updated booklet on Cockersand Abbey - thank you for remembering that. I wish I was still at work and able to do some sort of research, which is something like a downy duvet where you disappear for ages then emerge clutching a sheaf of papers and cry Eureka! Being serious, I need to immerse myself in some sort of internet dowsing so I can find what others have found. In the lab my speciality was Immunohistology so I'll contact the MSA people to see if they've made any significant progress in that area.