I just want to say how much exercising helps me manage this condition. I am living alone but I am at risk of falling over due to freezing gait and unpredictable falls backwards. But I am much better if I am moving about! The worse thing is to do nothing. If i have been sitting at the computer for too long then I am at risk when I get up. The evenings I am particularly bad and stumble about the house. But I have made a point of learning new things and amazingly have found that I can paddleboard! I run at least once a week which really helps my coordination. I walk daily on rough terrain to help with my fitness and balance and to get outside in the fresh air. I occasionally do Pilates and I've found that stretching really helps but regularly brings on cramps so I make sure that I have a hand held massager to help relax my muscles afterwards. I'm also trialling magnesium spray, on my GP s advice. Being active also helps with my mood.
I would encourage all of you to go out and do something amazing today! 😆😜 Lets beat this thing and enjoy what life we've got left to the full! 😀👍
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janecbain
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I was diagnosed in July but have had symptoms since 2019. I live alone so I'm hoping that i can keep my symptoms at bay for a while yet but my main worry is my balance as I fall over backwards and also am prone to falling forwards if my feet freeze which is happening increasingly particularly at night.
If you don't mind me asking - What is it that stops you doing those things now?
Sorry you’re here. Ive also had symptoms since 2019 but didn’t receive a correct diagnosis til last year.
I’m mostly in a wheelchair now asi can’t balance. I do exercise every day but , for someone who had an active outdoor lifestyle, it’s just not the same 😢
So sad to hear that! Keep positive and hold on to what you have and can do. It’s the only way you can beat this thing! Have you tried going out in an electric buggy? I saw a guy going up a mountain in wales on one on the telly the other day? It helped him ti stay positive after a stroke.
I really agree with you. This week has been way too much sitting in front of the computer and not nearly enough gym attendance and physio exercises! I can really feel it! It’s sometimes tough to get motivated and I have to really work on confidence, having twice broken my jaw from falls in the street. Adapting to safer things helps eg fast walking on the treadmill instead of running. It is worth it for the improvement in balance and speed, although I appreciate that this may seem like a long forgotten dream to others reading this now. Do you what you can everyone and good luck! G x
Gosh that sounds frightening braking your jaw twice! You are very brave to carry on ! How long have you had the disease and what can you achieve now? Are you able to do things independently still? I hope you don’t mind me asking- it’s. The bit I fear the most!
Wow, that sounds amazing. Movement is definitely so important to everyone. Sadly my husband isn't as mobile these days. He really struggled before his diagnosis as walking was so difficult and everytime he left the flat alone he'd fall or freeze then fall. He was quite active before with his job and the allotment. It just came on so suddenly.
His dizzy spells were so intense (and they still can be). I do try and take him to our Osteopath when I can, who does clinic Pilates with him, and he is better afterwards.
I'm a huge advocate of movement but I know some people, such as my husband, really struggle. It's definitely a thing of "do what you can". Anything is better than nothing.
Exercise and a good diet are essential! My husband was diagnosed 12 years ago when he was an elite oarsman, and he seems to have kept major symptoms at bay until this year by continuing to exercise as much as possible and eating healthily. He has been using an electric bike until just recently, and none of his clinicians understood how that was possible because of his balance issues when walking. He still goes to Pilates classes and tries to stretch at home every couple of days. Well done, Jane - just keep moving!
I know that the neurologist wasn't surprised when I said that I could paddleboard and yet find it hard to move about my kitchen without falling over! She just said 'that's neurology for you!'
Has your husband tried a tricycle at all? I think that I may need to get one because when I get on and off my bicycle I'm most at risk of falling. Similarly when I'm transporting the paddleboard from the sea to the car is when I really struggle. But that's part of the challenge!
What's the lifestyle like for your husband now? It sounds as if he is doing less than he used to?
Hi Jane, my husband doesn't drive as the DVLA took his licence away. He is struggling to walk, and has lost muscle everywhere, so is very weak. He tried cycling on a sideways tandem and enjoyed it very much, and we are going to look into hiring electric tricycles. This is a very sudden and dramatic deterioration - we cycled round Provence in May! Like I said, do what you can while you can! Good luck!
Oh dear I'm sorry to hear that. Thanks for the encouragement and the warning - Its much appreciated! Its so difficult to plan for the future when i have no idea what time I have being independent. I am making the most of it!
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