There has recently been a thread on the use of wheelchairs. I have deleted the thread, not because there were not some good points raised but because some of the exchanges between forum users were unhelpful.
I thought it might be helpful to give you my own thoughts on walking aids which are based on my own experience. As some of you know I have an idiopathic cerebellar ataxia. I 'furniture walk' around my flat, I use a stick when outside but if I am going further than my own gate I link arms with another person as well as using my stick. I have tried to use a walker but my feet kept on getting tangled up with the wheels leaving me feeling more unstable. If I am going somewhere and know I will have to walk a long way or stand for a long time or have to negotiate lots of obstacles/people I use my manual or power chair. This is both for my comfort and safety but also that of others.
I was diagnosed with ataxia over 25 years ago. My initial use of a walking stick about 10 years after I was diagnosed was not because I physically needed to use it, but rather because it let others around me know I had a problem with my walking and I wasn't drunk! Now I need to use it with the subsequent increasing use of the other aids. I know as time progresses I will become increasing reliant in different situations on different aids. In the meantime I try to be as physically active as I can, mostly through doing regular pilates.
I should say whenever I use a wheelchair now I feel liberated. I did fell self-conscious at first but going forward the positives far out-weighed the negatives. When in a wheelchair I no longer have to worry about falling and hurting myself or anyone else. I don't have to concentrate on staying upright and putting one foot in front of another. (I was going to say I no longer have to worry about standing on someone's toes but that is replaced for me when in a wheelchair of running over someone's feet!). There will possibly be a time when I require to use a wheelchair all the time. That is OK. This will be both for my safety and comfort and that of others.
As you know there are many different types of ataxia that can affect anyone at any age and all progress at different rates. As well as this you could have two people who are diagnosed with the same ataxia at the same age who will probably progress at different rates. As well as this we all think differently having our own views and opinions on everything What I am trying to say in a very long winded fashion and probably not very well is that we are all different! There is no right or wrong answer as to what walking aid you use (if any) and when you start using it. What I think is sensible, you might not. I think my my way of doing things is sensible for me. You might not agree. And that is fine. It might not be right for you and your stage of ataxia. But it is right for me. As I said there is no right or wrong.
Best wishes
Harriet
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HarryB
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🙂I missed that particular discussion. But just from my point of view, although I can still walk with a rollator, I’ve often thought I’d actually function better in a wheelchair. Having Vestibular problems means my mental focus is less compromised when I’m sitting still.
Totally agree with you Harriet on 90% but as yet im to stubborn to use a wheelchair. You or others may think im daft as i have fallen and broken bones but as a personal trainer i know about muscle wastage. I too furniture work and can only walk to my gate using the wall. Using any walking aids does not help me including a walking stick. If i use a shoulder and someone to help with balance i can get further
I am confused also, don’t understand this. I think I gave some advice on good types of wheelchairs to someone once who was asking, just sharing what is good to us. Sharing ideas can be good because wheelchairs are very expensive, so reviews can be helpful, if this is what you mean, it confusing, sorry. I find things hard to follow at times too.
I am positive your advice was sound. And you must continue to share your experiences/reviews-that is very important.
What I was trying to get across is that everyone with Ataxia is different, for example what physical symptoms are experienced, the rate and level of progression, emotional response to having ataxia, mental approach to day to day living with ataxia, to name but a few things. What works for one person may not work or even be appropriate for another. That is absolutely no reason to stop sharing opinions/giving advice. But is reason to be mindful that just because someone doesn’t agree with something that works for you, or disagrees with your opinion on something, that does not make it wrong.
I have just realised I think we are talking in crossed purposes. I have found the thread you replied in a couple of days ago called ‘Which wheelchair’ where you reviewed a supascoota. This is not the thread I deleted yesterday which was more of a discussion on when is the right time to use a wheelchair, not what type.
I want to ask you about Pilates. I have discovered it recently. What's your experience with it? Has it made a difference to your ataxia? Did it strengthen your core? Do you have an instructor or do you do the exercises alone? Do you do your sessions at home or do you go to the gym?
I have been doing Pilates for just over 3 years. I have one to one lessons at home, once a week. I try to do the exercises every couple of days, all at home. Now that I know a good range of exercises to do it is debatable whether I need to continue with the lessons, but there are some exercises I can only do when Louise is here to help me and I find the lessons motivating.
I absolutely love it and the benefits have been huge! I lost 2 stone in weight in 2016 with weight watchers, boosted by pilates. Although I have continued to eat reasonably healthily, unfortunately I do have a sweet tooth and Pilates helps me to maintain the weight loss. I get pain in my right hip, right shoulder, neck and lower back. Pilates for me is better than any painkiller, which I have rarely needed to take since starting Pilates. But the most dramatic effect has been on my ataxia and day to day functioning. My core and limbs are much stronger and my posture is much better. It hasn't stopped me from stumbling (which is regular!) but it has definitely helped my ability to 'catch myself' before I fall to the floor. I can now keep upright when crawling and am able to pick things up from the floor from a standing position without having to hold onto anything. I cannot tell you what a difference all of things have made to my life.
Another benefit has been from a mental health perspective. When doing the exercises I often have to concentrate so hard either on the exercise itself or on my breathing that I can't think of anything else. In a way it is a sort of escapism, which I find very therapeutic. I also feel so good after I have done a session, almost exhilarated. My movement is so much easier and the endorphins have been flowing!
I cannot recommend Pilates enough, to anyone with or without ataxia.
Wow! Kudos to you, Harriet. I did not follow that discussion, and at the moment I’m at work with little time to respond, but I just want to say I believe your message is critical. You said: “When I use a wheelchair I feel liberated”
Understanding that is key.
Thank you for letting me stay. I know my posts have been and are edgy. I think you know and believe that my intentions are only good.
Great post. I hope I have the courage to accept that reality when the time comes for me to use a wheelchair.
Thank you Harriet for your most interesting post. I think that I'll tentatively take up Pilates exercises, partly because there seems to be the possibility that they might help but also because it could provide a way to fight back. One of the worst things about our condition is that its progressive nature encourages, for right or wrong, a passive acceptance of what's happening to us. Anyway, whatever the effects upon me of pilates, your post was most encouraging.
Come to think of it I'm sure my wife attended pilates classes some years ago, perhaps there's a free tutorial there, provided she doesn't confuse it with car maintenance. Thanks for the post and the advice therein,
May I add my perspective on using a wheelchair, which I hope is helpful.
I am fortunate in that I only have a mild (idiopathic) cerebellar ataxia which I inherited from my father who used a wheelchair for many years until his death in his 90s. Currently in my mid-60s, my ataxia symptoms are so mild that you would probably not recognise me as having ataxia unless you knew to look for my symptoms, so I do not need any walking aids.
I have friends in the disability field (who do not have ataxia but have other conditions) and I have learned from wheelchair users how using a wheelchair can FEEL difficult both because you often have an inner message that you have to keep on fighting rather than giving in to the condition/disability and because of worries (sometimes subconscious) that other people will behave differently towards you as a wheelchair user - the 'does she/he take sugar' syndrome. The oppression (of disabled people) is therefore an element that makes the discussion of this issue particularly difficult - it is not just, "Shall I use a wheelchair or not?" (that is, just thinking about whether the wheelchair is liberating or not) but also "How do I feel about my identity as a person who uses a wheelchair?"
Such helpful information,Harriet.We have seen you on occasions at the conferences.Now in my 80s I admire all the young people who are having to cope with ataxia. I lived with my maternal grandfather all my childhood/
teenage years,looked after my mother for the last year of her life,saw first hand how my aunt deteriorated,also a cousin, all of whom had ataxia,I am sure,after research by myself and my neurologist.
We have all deteriorated differently as you so rightly said,inheriting SCA 6.
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