Hello all, I’m Jane: my husband had MSA(P) and I shudder to think how I might have coped before social media.
I was all over the place looking for information. Chris was *eventually* diagnosed in 2014, although he had symptoms from 2009.
At the time, the MSA Trust had a brilliant interactive ”Forum”, mostly used by carers, although I do remember an inspirational Dutch gentleman living with MSA giving us his view of life from a camper van, while he ticked off his bucket list.
The MSA Trust “upgraded” their website in 2015, and the Forum was lost forever. Probably Freda is the only person here who remembers it.
I think Health Unlocked is fine if you have a question that doesn’t need an immediate answer, or any conversation.
I have set up a FaceBook group for MSA UK and Ireland Carers: Ian Taylor and I are the founder carers who understand what MSA means for Carers - please do join us. ❤️
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I remember the forum well. Towards the end there were very few members and I recall being very frustrated by the lack of response and interaction.
This forum does allow for immediate response indeed if you look through past posts I think members have been very supportive of each other and we have all been very grateful for that.
We find a dedicated site like this free from all the junk that appears in Facebook to be more discrete. Nevertheless I think Facebook has its place, I’m a member of a number of groups and there is good information there.
Please continue however to support this MSA Trust forum where with almost 1400 members we really have a place where one can question, laugh, or just have a rant knowing others around you are supportive.
oh yes i do remember it well. it was such a help and saw me through many a tough time
the inspirational dutch gentleman was Leo Vogel and i am still in touch with his wife -she will be so pleased that he is remembered as he deserves to b
i feel I am a diminishing asset as far ar Health Unlocked as treatment improves (yes, really) and i am getting old and out of date with my stories from the past
Hello Freda. We have always enjoyed your stories Freda. Whilst I agree treatment and products move on and change; the one thing that doesn’t change is human kindness and compassion to those suffering with a beast that can’t be tamed. You have shown kindness and compassion, Freda in bucket loads and I so hope you continue to share that love of life here, where you have been such an influence over recent years.
The HealthUnlocked site is for carers sufferers and professionals alike to help each other where we can and is not meant as a substitute for talking with medical professionals. MSA trust are on this site and where appropriate add their comments, but this is a support network for all.
It is discreet for those who use it in this horrible world and we do find that questions get commented on quite rapidly.
I must say that in this age anyone who needs an immediate answer will struggle as the world is struggling with a lack of resources and time.
There are already groups on Facebook, but it's an area I wouldn't like to share details on as it is a huge area for idiots with misinformation.
If you have an urgent question why not post "URGENT" in your title?
I closed all my faceboook accounts years ago when they started what is effectively political censorship and kicked a friend of mine off for posting FACTS they didn't like. I find the forum here friendly and helpful.
I too was a part of the old forum, and found it was so helpful as I navigated dealing with Geoff’s progression and how to best deal with things, as was a couple of people blogging their journey with MSA.
You used to be able to look at the stats on the old site, which showed how many people had read the posts, which was so many more than those who had commented! And this will be true of this one as well
The Facebook page is a closed group that you have to join but is there in a different arena where other people will find it and that’s so helpful -as much support as possible in as many places as possible seems good
Well done to those who run this and the Facebook pages
My name is Alec and recently diagnosed last year, in fact, a year ago today, Happy 1st bloody official MSA birthday to me! 😆😆😆😆
Any forum is great that people find helpful and suits,
Currently, I find this forum extremely inclusive for those, unluckily enough, to have MSA and carers alike,
I really enjoy using this forum, other forums are available T&C's apply, (apologies I have a dry dark sense of humour )
Whatever works for the individual I'd say but, there's always someone with a but, (usually me) I have found the more I put into this forum the more I get out.
Like others, I do attend to avoid Face Plant, as it's too PC linked to whatever political media mogul is currently buying up shares. Call me cynical but, I am.
Each to their own this wonderfully bizarre buggery of a journey through MSA.
Oh, et all Leo Vogel, I was and will be starting to write a weekly blog through MSA, my friend's suggestion truth be told but, if it helps others and makes them smile and realise we're not alone then all good. And, always an and, (usually me) I feel it prudent everyone else should have to go through every muscle spasm, toe cramp, pants wetting, legs not working, voice losing, coat hanger pain, blood sampling bloody moment with me! Other symptoms are available T&Cs apply!😉
I look forward to reading your blog, I like your sense of humour!😂😂
We need all the humour we can get in dealing with the symptoms of this damn condition. I must say that as a carer to my husband for more than 5 years, my sense of humour has deserted me at times!🙈🙈🙈
Yes you are right. We have a very supportive family but I do not want to worry them with how very overwhelmed I feel trying to steer a path through this complex condition and daily watching the deterioration in my husband. I try to put on a brave face but recently that has been a struggle🙈🙈 I am sure this is something you relate to in caring for your husband. All the best.
I was diagnosed with probable MSA in March 2022, with a definite dx in Sept 2022. Would I and my husband be able to join your FB group please ? This is because I find it easier to type on my IPad , often use Siri on days my voice is strong . Many thanks in advance 😊
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