Very Confused

[neta]

Hi all,

My neurologist says I have CA borderline MSA and gives me sad looks, He says to exercise but doesn't think it will help me much..But my PT swears that with hard work meaning exercise,, I can improve. One says the rigidiity is the disease; the other says inis mostly fear. Cantle brain really readjust?? Who should I believe/?

[nicanna]

Hi Neta! I have been told I have CA by my Neurologist too so I can totally empathise with you. I have started exercising every day on a static bike to try and build my leg muscles which does seem to help me. Saying that, my balance is still bad but instead of stumbling and falling I tend to just stumble now, touch wood!! I know what your PT means by being rigid through fear because I am, especially when I'm out and about. In the house I seem to walk much better. My Physio gave me a walker to use when I'm out but I'm only 41 and don't want to use it!!! But I did use it to walk along the road, by myself!, and realised it gave me independence again! However, it still lives in the cupboard under the stairs!

I don't know if the symptoms can be reversed but I think teaching your mind and body to adjust over time helps!

Good luck, Nic x

[neta in reply to nicanna]

Dear Nic, Thanx for sharing Walkers aren't the end of the world. I wish all of our equipment was funkier looking and not so aging. Best N

[Herman2301 in reply to nicanna]

I am 46 now but 4 years ago started using a walker to give me my independence back. I took my hubby into the shop and said "what's the most expensive, I'll have that one!" then when I got home, I collapsed in a heap on the floor, in tears, thinking that was it, I was officially old! The reality is, no one notices you whatsoever! They're all too bothered with their own business. Go girl! X

[neta in reply to Herman2301]

Thanks for sharing XN

[wildstyler]

Exercise is definitely the answer, it's up to you , it's not what you've got , but it's how you deal with it.

As it is genetic it would be advisable to persuade any offspring you may have to join you in exercising , so they will be prepared for what the future might hold.

[neta in reply to wildstyler]

Sorry 4 the delay..thanx for your input

[sunvox]

Hi Neta -

Yes, the brain can readjust. It's called neuroplasticity and it's well documented. Any exercise you can do will help slow your decline.

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Since you mention MSA I have a thought. MSA is associated with mitochondrial failures and there is a ton research on micronutrients that may improve mitochondrial health.

-

What are you taking right now?

[neta in reply to sunvox]

This whole MSA thing is very unclear and debatable. but how much work brings about a brain change ?? Now I take Amantadine thanx for your interest...N

[Cerebraljon]

For the big picture, the neurologists see what you have and see there is no ultimate cure at present, which is harsh for us sufferers to accept, but in many ways physios are more practical, neurologists are hoping for a cure whereas a good physio will help you manage what you got and themore you know about managing your condition the more you will be able to do. Stay strong!

[neta in reply to Cerebraljon]

Spot on and thanks!!,

[Capricorn9157]

Hi Neta. Exercising can help. My PT gave me some to do at home. I used to go to her clinic but find it is easier at home. I can do them when I can, and the ones I can - although at most I manage 3/4 a day (and cant do them every day).

They do help because it is a great satisfaction when they are done and I feel better. Whether they help physically, I dont know but mentally good.

I cant get out as I can only walk about 150 yards before having to rest, and thats using crutches, and am careful around the home - holding onto furniture or walls etc. Luckily I have a bus stop about 100 yards from my home, which helps getting to GP or hospital.

Do whatever you can, when you can and be proud of your achievements - give yourself a pat on the back Dont let your GP's looks get you down (I am sure he is normally 'good looking??'...lol).

There is no 'miracle cure' so we should talk to each other and learn our own limitations.

At the moment I wont give in to a wheelchair and will hold out as long as I can.

GOOD LUCK - and keep smiling

[neta in reply to Capricorn9157]

Sorry 4 the delay--computer woes...thanx 4 your wisdom xxxz=N

[Zombi]

Hello Neta, My wife has Ataxia caused by lifelong epilepsy. She was getting very depressed until we joined out local Litter picking group. She finds the activity very rewarding. Taking her time and with care she cleans out local streets. The exercise and feeling she is helping seems to invigorate her. So I would say find something you can do and go for it.