Introducing myself -Terri & Anthony USA (fairfax va)

[Tbird0112]

Hi all, I’m the wife and 24 hr caregiver for my husband 54. He has been experiencing Neurodegenerative symptoms for over 4 years now. They finally diagnosed him or beat they could with MSA-C this past fall. I read everything I can on this and have a high enough IQ to know that I know just enough to be dangerous, lol. I’m sarcastic at times and that’s the result of hanging with a couple of friends that won’t let me take life or myself too seriously, going on 40 years now. I’d be lost without them and a great family as well. His is a generous mix of Ataxia, Parkinsonism, NOH and headed toward PAF. My days are about staying in front of this anmuch as I can. He wants to stay home, so I have taken a long term sebatical from working in commercial accounting to stay with him. Please feel free to message me if you’d like. -Terri

[Yanno]

Hello again Terri

Good to have you on board albeit its a shame you need to be here. You will hopefully find many people here who will give advice if they are able and support if needed. My wife Jackie has also had symptoms for about 4 years and I gave up work to be her full time carer. I have to say I have never regretted for a minute doing that - we try to keep doing as much as we can and still travel frequently, albeit we now mainly restrict that to Europe.

Hopefully someone may have some input on your earlier post.

Take care, Ian

[FredaE in reply to Yanno]

Hi and welcome to the club no-one wants to join

Some people like to know as little as possible about their diagnosis and disease others do better, like me, if they know as much as possible.. Sounds as if you are the same.

If I am telling you more than you want to know just ignore me. If you need clarification please ask.

To over simplify - there are a lot of sections of the brain which are responsible for different functions.

There are two problems...firstly there is no window where we can see what is going on ( even if we fully understood what was supposed to be happening , which we are only just beginning to learn) and we have to guess from what is happening.

Second these systems are often inter connected which makes it more difficult to interpret where there is a fault.

For example if standing up without falling over means three systems co -operating, lets call them A, B and C.....all you know is that the patient can't stand up so there is something wrong somewhere.

Start with A. It needs a message to pass on to B and then from B to C When it arrives safely at C the things neccessary for balance will happen and you can assume that all parts of the system are working.

If the patients can't balance, something is not working. How can you tell which? Maybe A is broken and cannot receive the message.

The system fails and the patient can't balance.

If A is working well and can receive and send on the message, maybe B can't receive it .

The system fails and the patient can't balance

Maybe B receives the message perfectly but can't pass on the message.

The system fails and the patient can't balance

Maybe B can send but C can't receive it

The system fails and the patient can't balance

Maybe C receives it perfectly but can't pass it on

The system fails and the patient can balance..

THIS IS VERY MUCH SIMPLIFIED. Its much more complicated than that

How do you work out which bit is not working as the evidence in all cases is that the patient can't balance. Of course A may never have been sent the message in the first place and may be more than one thing is wrong.

The related disease of Parkinson's is in one particular part of the brain and there is medication which usually helps.

You will hear talk of deep brain implants.. they can be used in Parkinson's because they know which bit is not working. They can't be used for MSA because each person has problems in a different section of sytems so no-one knows where to put an implant even if they could invent a suitable one

There are overlaps in all the neurodegenerative diseases so as you say, a generous selection of bits from this ,that and the other disease. Does not mean you have them all and it will take time before the evidence settles down to indicating one disease rather than another.

This uncertainty at the beginning is one of the hardest things to bear.

Give the beast a good run for its money. You may not be able to cure but there is a lot you can do to make it easier to live with. Good luck.

There's loads of top quality info to be had from thr MSA Trust in London. Not scaremongering and not full of false hope

FredaE