Sorry

[NellyTF]

I went on this forum to see how other people with MSA were coping with their symptoms. There are a lot of folks much worse than me, and I’ve read too many horrible stories on here. They remind me of what’s to come.

I know I will get worse over time, but I am finding this forum to depressing, therefore I am going to delete it from my iPad.

I wish you all the best and stay safe.

Neil.

[Hidden]

Sorry to hear this. The reason i stay on here is too see what is to come. I know its depressing but the up side is you will get sound advise from people who have lived with it. Its a really good place to voice your concerns, fact finding and to see if something you are experiencing is normal. The MSA Trust and your neurologist team will help you for sure. If you are newly diagnosed these sites will feel daunting but they will help. I hope you are ok, best wishes Sharon

[NellyTF in reply to Hidden]

Thanks for your reply.

I am ok and taking one day at a time, living for now and making the most of it. I try not to think too much about the future, it may seem like a negative attitude but it works for me.

Neil.

[Yanno in reply to NellyTF]

Hello Neil

I one hundred percent understand and agree with you about living one day at a time. If you look through past posts you will see constant reference to making the absolute most of every minute of every day.

If you are coping well and if you have all the support you need then I wouldn’t look at the posts. You will however, because we all do, find times when you need to reach out for help, support and maybe just to have a rant. That’s the time to come back here to find so many willing and positive people who are all trying to make the most of every day.

Also don’t forget this is our forum, all of us. If you want to put up some upbeat posts with the sort of content you want to read....then do just that as I’m sure we will all enjoy them.

Take care, Ian

[NellyTF in reply to Yanno]

Hi Yanno.

Thank you for your reply. I do have a lot of support from my family and friends helping me get through every day.

My wife is an absolute rock and if I’m feeling a bit low or having a bad day she usually comes up with some way of cheering me up. I spend a lot of my time making plastic model kits, mostly motorcycles. This keeps my mind active , because of my mobility issues and the loss of dexterity in my hands, I have to find new ways of doing things that I could manage with ease before. It’s a shame we can’t post pictures on here.

Stay safe.

NellyTF

[Yanno in reply to NellyTF]

Hello Neil, you can post a photo, I’ve just tried it on the iPad to make sure. Select ‘Write’ to start your post and in the bottom left corner there is a camera symbol. Follow that to add your picture and then write in the usual way.

Take care, Ian

[FredaE in reply to NellyTF]

I echo what Yanno says. We shall be here if you feel, at some time in the hopefully distant future that it is the right time to come back here, you will be welcome.

In the mean time, "Do it now" and "never take no for an answer" may help you on your journey. Good luck

[NellyTF in reply to FredaE]

Thanks FredaE.

[Gardener10]

Hi NellyTF,

I hope you haven’t deleted just yet, in order that you may see my reply. I was diagnosed aged 52 in July 2020. I fully understand your feelings which was one of the reasons I decided to stop dialling l in to the four counties MSA support group.

I wonder if there is enough interest for a newly diagnosed subgroup within health unlocked. Obviously this would need over seeing and administrating. I know I personally, I would find this more beneficial than feeling like a rabbit in the headlights, having read some of the posts.

Take care

[NellyTF in reply to Gardener10]

Hi Gardener10.

That is a very good idea and a very good way of expressing how a lot of us who are relatively newly diagnosed feel.

I imagine we all know what’s to come in the future, but I personally don’t want to read/think about it.

I want to stay as positive as I can, therefore “live for today”

I don’t know how you would go about setting up a subgroup on here though or how to put it to one of the administrators.

Stay safe.

NellyTF

[Annietutt in reply to NellyTF]

Hi Neil,

My husband Tony shares your feelings and has never wanted to confront the future, so I quite understand how daunting it can seem. I, on the other hand, prefer to know what may lie ahead. I say “may” because not everyone follows the same pathway. I have found the forum helpful in terms of receiving practical advice on how best to help Tony and prepare for the future. Although I did not join until Tony was in his sixth year, so maybe newly diagnosed is not the best time.

I think Yanno is right, the time may come when you need that sort of support but you are the best judge of that and obviously you would be welcome to rejoin at any point.

Anne.

[Gardener10 in reply to NellyTF]

Thank you for your response and your expression of support for a sub group. Take care x

[FredaE in reply to Gardener10]

Years ago my I created a short powerpoint in the style of a comic book (less language problem for non English speakers)with the help of my Grandson on the early days of diagnosis and how my husband and I coped with what is the most difficult part of the Beast that is MSA. it still exists if it is any help to anyone but I can't do the techy bits to send it.

In the past MSA was regarded as solely an old persons disease and, like Parkinson's, under - diagnosed in people under 65. The Parkinson' support charity responded to the increase in early onset by creating a special Young Parkinsons's Group and it is clear that the attitude and abilities and coping strategies of this group is very different from the older people. After all if you are in your seventies and have done many of the things you want to do in your life you are more likely to accept what is happening to you. In any case even if you always wanted to climb Everest you have already left it too late and cheering on your elderly friends in fundraising Marathons is not going to happen

Have a look at Young Parkinsons, if it still exists ,and see if there is anything helpful you can learn from them in creating a help line.

this group is not meant to be exclusive and if it can help with setting up another group to meet different needs then that would be wonderful.

In the past there have been too many questions of the darker sort unanswered with nowhere to go for unsanitised information. If dividing into two groups would meet everyone's needs better then that's what should happen and the sooner the better..

Do it how and never take no for an answer..as I may have said before

[Gardener10 in reply to FredaE]

Thank you FredaE for your comprehensive response x