Yesterday I had my two yearly appointment with the neurologist.
She said that she thinks I have made progress and also gained strength. She thinks, as do i, that I can do more and more easily.
This proves to me that the plasticity of the brain really works. That is the brain making new pathways to do actions, etc etc. She confirmed that she thinks this is what has finally started to happen.
I currently do two sessions of physiotherapy every week. One session of 1 1/4 hours, and one session of 2 hours. The repetition of exercises really works. But it takes a lot of work and a long time. I was diagnosed in 2010 and have been going to the physiotherapist ever since. Before my sessions were shorter. I've increased my time at them at the end of last year.
The difference to me has only really been noticed in the last year.
I'm feeling very positive.
I just wanted to share my good news with you all and hope to encourage any of you to keep at it. Keep moving, exercising, whatever you can do. Push yourself whenever you have the energy. Keep at it and of course rest too.
Love
Alison xx 😘
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ww-wibblywobbly
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I can't recommend how to get more support in the UK. I live in France. I do know that it's possible to have a stay in a rehabilitation center for pretty intensive physiotherapy etc. You would need to ask your GP about it xx
That is brilliant! Well done! How did you access your help please? We almost need a list of what can be accessed and how,if you are in the UK. I got my eye and balance exercises entirely by accident- would I have had them otherwise? No!
Hi pinjem, I live in France so I'm not very up to date with what you can access in the UK. Physiotherapy is a big thing here with many small private surgeries. But the government pay for it all as it is a lifelong illness.
There seems to be a limit of 6 sessions of physiotherapy per year in the UK. But I'm not too sure. I know there are rehabilitation centers in UK as a friend of my mother's with a mystery neurological illness went into one. Maybe you should post your question separately and see what answers you get. Sorry I can't be more help.
I have joined a new gym which has conveniently just opened at the end of my road. My plan is to work on strength training and I have asked a trainer there to treat me as though returning from a long illness and needing to regain strength.
This doesn’t combat the wobbliness but as you say repetition retrains the brain and makes the best use of plasticity.
I had a realisation this morning based on a brief conversation last week. I use trekking poles when I go out and these are not to support my weight but rather to give me rhythm in my gait and more feedback to my conscious mind. We naturally use something called proprioception to orient ourselves in space. This is feedback from eyes, ears, sense of feel via feet and even wind on our skin. Given the gaps in our cerebellum this incoming information gets scrambled or just plain missed, causing sensations of uncertainty and wobbliness. Therefore the more conscious information I can give myself the less wobbly I become. The more I set up new pathways in my brain.
Our major issue is unpicking automatic responses we have spent a lifetime perfecting, but which now lead us into trouble.
So keep up the good work and exercise, we have to combat the natural slowdown caused by age.
Yes but I have found that the increase of doing more has been over a period of years. If I try to advance too quickly then I absolutely shattered and then kinda relapse.
It's a fine balance of doing many different things and rest. And of course social or whatever you enjoy.
I have spent the last few years thinking of nearly everything as a type of exercise. Whether it be peeling potatoes, making greeting cards, hoovering, as well of course as the physiotherapy. Everything is easier, and I can do more of everything. It really does work. A few years ago I could only peel two or three potatoes, now I can peel a whole batch. I know to anyone else this sounds daft, but life is definitely less difficult than before.
However, I'm not sure if my balance is better or not! That one is really hard, even though I do regular balance exercises. Def need all my other senses - couldn't possibly walk with my eyes closed!
What happened with your site. I found it really useful. I did the eye exercises and regained my peripheral vision and the hand exercises, which I still do.
Quite agree about wobbliness. The degradation of the cerebellum over time means we are always likely to remain uncoordinated. I tell people that all my several parts work fine, just not together!
I haven’t added anything to it for more than a year but that’s because I’m very busy fighting my own issues. Plus retirement has brought me grandchildren and pressure from my hobbies for more of my time.
I’m about to acquire a scooter to enable me to go for meaningful walks with my wife. I have no plans to stop walking or exercising but have found hiring a small scooter has enhanced our holidays.
While there is no cure for our loss of brain matter there is much more to do to make what we have left work harder.
Dear WW-Wibblywobbly, That's very encouraging news! I had total knee replacement surgery a week ago and am struggling with doing the exercises because of pain! You've really helped me see things differently and know that if I cringe through the pain, I'll be better off for it!! Thank you for that and keep up the good work, as you're an inspiration!
Hi i ve been doing physiothérapie for years and my physiothérapie says she cant do any more ...i will speak to my général dr to ask for another prescription i think its important to continue thé physio , i have learned to live with the walking problems but its thé pain in botton back and legs that give me lots of problems especialy in thé mornings.i take à very strong pain killer ) tramadol ) they are going to do a MIR on my back à nd legs to see if its another problem ..for thé moment eveything gets blamed on Antaxia have à Nice day
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