I just want to share with you all how I have changed the way I walk recently.
I have a SCA unknown gene, and I have quite a lot of spascitity. From last November I have had a lot of trouble with walking and I started to use two walking sticks most of the time.
Walking was becoming very dangerous and painful. I really had no control and I'm not just talking about balance. My knees and ankles and hips we're giving way several times a week, which was painful and dangerous - if I didn't have anything to to hold on to then I'd finish up on the floor!!! Ouch!
About 6 weeks ago I saw a different physiotherapist who tought me to walk keeping my knees bent. It was very difficult and exhausting at first but now I can manage it ok without having to concentrate on them staying bent to much. I now have more control, less joints giving way, so less falls and it's much less tiring.
The first exercise I had to do was walk around the house like an ape with my knees staying bent and my arms just hanging, except for the one holding the stick. Then it was a matter of putting this into my everyday walking, which I started on the walking machine with the physiotherapist helping to move my leg at the right moment - before I straightened the other one. It's been difficult but well worth it.
Just wanted to share in case there's anyone else with quite high spascitity who could benefit.
Good luck all.
Love Alison xx
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This is REALLY interesting , and so glad your physio was able to help. I have not heard of this technique being used before
apart from the work of Dr Thomas Clouse ( based in the USA ) who uses a similar technique in his work as a foundation to improve walking / movement . He first discovered it on himself ( he hasSCA14 ) whilst trying to improve his own movements and has recently published his work in detail along with patient examples - reclaimingnaturalmovement.com )
I am a UK based physio and hoping to incorporate Dr Clouse’s work in my practice - where are you and your physio based ? I would love the chance to discuss this further.
I live is a remote village in SW France. Not too far from the Spanish border.
I see my physiotherapist twice per week for sessions of 1 & 1/2 hours long. It was actually a replacement physio who taught me the new walking, but I think that was just someone taking a new look at me. I've been seeing my usual physiotherapist for several years.
Please feel free to ask me any questions, you can always message me privately if you wish. Though I'm not sure about contacting the actual physiotherapist, probably depends on how good your french is! But if you want to I can ask him about that.
Hi Diana, it’s good to hear from you, I organised Tom’s event in Eastbourne (Roc) and it was lovely to meet you there, it’s great to see that Tom has finished writing his book at last , but I can’t see anywhere the price of the book on it’s own? Only with online access as well? A lot of us are unable to work and have very little income so wouldn’t be able to afford $100 . Is Tom going to sell the book on its own at an affordable price for all of us? xx
Hi and thank you for sharing, I too have developed the same problems from 1/10/2020 I just can't lift my legs and need something like what you are saying. I am seen at UCL London and they said I had infection and sent my GP on a wild goose chase 😁 anyway I have SCA1 and thank God nothing else.
What is your technique called. Do you have any written exercise program that you can share.
I would like to inform my consultant of what you are saying, so they can believe me. May I?
Sorry I don't have a name for the technique and don't know if there is one.
I also don't have a written programme for the exercises that I do.
If you wish I could expand on the other exercises that I do regularly.
I often walk at the physiotherapist cabinet raising one leg and bringing my opposite hand to my knee. I do this in a very narrow corridor area and kinda ping off the walls as I go. The idea is to exaggerate raising your knees so that when you walk in your normal way you raise them a bit more so you're less likely to fall over anything.
You are very welcome to share my post with your consultant and I sincerely hope it can be of benefit to you.
Good luck with your consultant. Do you see a physiotherapist?
My physiotherapist isn't a specialist in neuro illnesses, but he often works with people with Parkinson's, after a stroke and other neuro problems.
Thanks Alison, I have a physio, got an appointment for 1)12/2020 so will ask her. She is really good and her exercises are helping me. Because of spasticity my consultant increased baclofeñ but she suggested that I do 10 minutes after having baclofeñ I am going to start on Monday. Let's see what happens.
I also think I am going to practice your walking exercise with a walker first because I can't lift my legs at all.
Very interesting,I think I may just give a go but as u said I have to concentrate on what I'm doing and we are not designed to walk like GORRILLA'S -LOL Thanx
It was actually easier to walk like a gorilla!! I have also found it's easier to walk backwards!! LOL Changing things really does take a huge amount of concentration and it's exhausting, but after a while it's worth it.
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