Hi all
I know a lot of you have been helped by a Neurophysio.One is coming to the house tomorrow.What did you find helped?
I got my road scooter in the spring.Prior to that I used to walk or take my rollator for exercise.
What should I do now?
An ordinary physio gave me some exercises for the core muscles. I feel now I need something specific.
Marie
The Neuro visited.Basically I have to work on posture as I have got into some bad habits.I lean over and grab things and furniture walk.I need to use the indoor rollator more. I think I want to keep both feet near the ground and lean over and shuffle stiff legged from a to b.It seems another change to adapt to. The neuro and Riding for the Disabled both ask about your mood.It is good to understand how immportant this aspect is.Luckily my mood is generally good but I do have bad days when I feel resigned rather than fighting.Eaach one of us from what I can gather has different interests. I think these things keep us going .But this constant need to adapt and change habits is very confusing and wearing.There seem to be so many theories I just get lost.What next!! Sometimes I just feel overwhelmed.
The Neuro told me to practice holding onto something and just moving my leg round and round.Just thought I would pass this as there must be some like me who are in the transition stage between walking/lurching and a scooter.
Hi Marie - yes can relate to that - I have two fischer sticks to use to maintain straight spine - MRI showed wear and tear!!
However, I find it much more convenient to use one stick and use Ken's arm for support.
Now we are living in retirement apartment, they have Tai Chi classes here and I am loving that. Some I can manage standing and others I sit on a chair and just do the bit with arms.
Take care, Patsy x
Interesting how much you attitude plays apart in this ... I enjoy getting and just being out-side! That is just the ICING on the cake for me, riding my recumbent trike is both great exercise AND mentally helps even more - it open up the door to do all kinds of different types of work-outs. Mat Pilates (and the instructor) has probably done the most in the "ATAXIA" related things (very focused on the type & quality of movements - we all do things to adapt, most are not really that helpful in the long run {posture & breathing} are just two of the many 'BAD HABITS' we all get into so easily.) Yoga has/is keeping me flexible - water aerobics are GREAT. Everybody seem to forget how important a good stretch is - as an Ataxia patient I can not get to many stretches in, I'm constantly stretching! Yes, riding the recumbent as much as I do adds to this "SOME", I walk better (more in controlled and with purpose) than 13 years ago when I was 1ST diagnosed..... And that in it's self is enough for me to keep on exercising them - with all this said, God it 'Ultimately" the real power behind me, but He is a God of "means" - I commit to make the 1ST step, it's in His power ALONE that I actually make it!
David/Spinner
www.RideAtaxia.org/orlando GO TEAM Carly's Cruisers!
Hi Marie
Have you tried walking poles yet? I’ve got some recently and found them so helpful in getting an upright posture. Have a look at Ataxia UK blogs because I’ve written about them there - what I chose and how they’ve helped.
The other thing I’ve found that the neurophysiotherapist showed me was how to find my core balance by actually pinning my feet down with his hands so I stopped thrashing about and found out how to balance for myself- this was a revelation! I ve found a way of replicating this at home by sitting on a chair facing the sofa and jamming my feet under it so that I can then learn to sit up and work on the core balance, lift light weights and generally stretch up and look up AND make sure the sitting position is not too wide based. A lot to do to start with, and I was exhausted afterwards but it is helping me as I practise it.
I'm rather new to this Ataxia lark, I have seen a Neuro Physio twice within a week. Must say 1st session wasn't impressive and I didn't learn much but after the 2nd session realised she was checking me out and she really gave me hope, in as far as your brain when told to repeat things, actually remembers and improves itself. My exercises all revolved around repetitions and heyho the improvements were immense. 1 exercise involved trying to stand on one leg on a part blown up cushion, impossible for the first minute then the improvement came. After the session I found balance in particular far improved. Give it a whirl, as they say 'nothing to lose, everything to gain'. Good luck !
Hi Marie,
I have never heard of a neuro physiotherapist I should see one. I go for my physical therapy and do my core and strengthening exercises. I manage to move around but not out doors. My balance and walking are just ok! Cannot manage without support for long. Thanks for the information. The mind has to constantly remember too many things to walk, balance and posture. A struggle indeed but hoping for a better outcome!
Hi Marie,
Exercising muscles for strength and balance seems to help me the most! I also went online and bought a book called "The Balance Manual" ($19.99), which has been great! You can modify most any form of exercise to fit your needs. For example, my balance is so compromised, I must hold on to the counter for standing exercises, or be on the floor or in a chair for others. Also, the person who wrote the book (he's a pt), occasionally sends me "free" online exercises (videos) to do, and they're simple, but effective. I agree with others, yoga, pilates (standing if you can or down on the floor on a matt or sitting in a chair) and water aerobics are wonderful forms of exercise! And stretching is important, as you can do that sitting. Keep moving anyway you can, even though it's easier at times not to! You sound like you have a good attitude, and that's half the battle with ataxia :o) !!!
What is a Neurophysotherapist? How is that different than a physical therapist? Or is this one of those British terms that is baffling this American?
Willis Whitlock said:
What is a Neurophysotherapist? How is that different than a physical therapist? Or is this one of those British terms that is baffling this American?
We have been going to a neurological physiotherapist in Adelaide South Australia. She is fantastic and specialises in the balance and co-ordination. She then reports her exercise regime to our local physio. The exercises are much more targeted to problems people with ataxia and parkinsons are experience and is well worth a try. Good luck.
dellywelly said:
Willis Whitlock said:What is a Neurophysotherapist? How is that different than a physical therapist? Or is this one of those British terms that is baffling this American?
I think dellywelly has written a good response to your question.Well done you for asking.I am just about getting my head round some of the terms.
Thanks for the explanation on "nerophysiotherapist". I'd never heard of one either! Sounds as though anyone who has ataxia would benefit from seeing one...
A neurophysiotherapist is an expert in brain related problems as opposed to just physical problems. They understand 'why' specifically when diagnosed with ataxia or parkinsons etc.
The balance exercises, which I need the most are very good.
DBW
I mentioned this a couple times before, but I bought a book online called "The Balance Manuel" ($19.99), which has been very helpful for my ataxia. Mike, the author of the book is a physical therapist. Occasionally, I receive "free" balance exercise videos online, which are simple to do but effective. I happened upon this site while researching ataxia/balance etc. FYI... ;o)
Walking poles would be good for posture but not strong enough for my non existent balance.Using an indoor rolllator now since both Neuro and o/t said I need to consider my posture. Gives me more independence.