As my ability to walk is deteriorating, I need to use a mobility scooter to get around locally. I simply cannot walk far without pain, fatigue, balance issues and problems with coordination. I can get about the house with aids and have two walking sticks for walking outside. Still, I can only walk very short distances before I need to stop and rest. I can sometimes manage to get up or down our house stairs but increasingly need to use the through the floor lift we have.
With all of this in mind and with my sister constantly asking me to visit her in Germany, I have given some thought to purchasing a self propelled wheel chair. The chair would not only help me get about while traveling longer distances (such as to visit relatives) but would enable me to get out and about around my destination.
As well as visiting relatives, I have a friend that keeps asking me to go to comic book, science fiction and other conventions but I keep putting such off because of the problems getting around or hiring a wheel chair - the last convention we were interested in wanted a £300 refundable 'security' for daily wheelchair hire!
I have seen a light weight, strong, wide seated and easy to use wheel chair that would probably suit my needs and my mobility provider (mobility scooter etc) has said he will pick me up and take me to his shop or workshop to view and try out some chairs. My provider also always has very reasonable prices.
As a mobility scooter user already, I'm sure that using a wheelchair only when needed will be a good thing for me. I do wonder if I should talk to my GPs about this though (my GPs practice is aware that I use the mobility scooter, sticks and other mobility aids).
Hi Micheal, A wheel chair sounds great as long as you have strength in your arms. I use a walker in the house and a scooter to get out and about. Visiting your sister with your own wheelchair sounds the best. Less hassle than your scooter.. good luck and best wishes.
I am in the same boat.I got my wheelchair from my Neurophysiotherapist but I use a walker thing inside with 4 wheels.I use the big outdoor scooter for long walks and the manual whheelchair for the weekly shop.I should use the wheelchairr more often to prevent fallls. I thing there are pros and cons.
I think it depends at what stage of Ataxia you are and your hobbies. I cannot walk now so sticks would be no use now but I did use them for about 2 years.I have done things in stages.After all these are just tools to help.
It seems a different psychology for each stage.I am just getting my head around not doing the things I did in the past but my cognitive abililties have remained unafffected.If you have your mind you can just find another way around.Your mental health is just as important.
My wheelchair is there as a back-up and carers like to use a manual one to know where we are.I manage to wedge it in doorways and still get in trouble.I consider myself as a nuisance.I have no genetic link either. I think my father's parkinsons may be a very tenuous link but it might also be a red herring !!I prefer to think of it as Cerebellar degeneration.
I am in the same boat.I got my wheelchair from my Neurophysiotherapist but I use a walker thing inside with 4 wheels.I use the big outdoor scooter for long walks and the manual whheelchair for the weekly shop.I should use the wheelchairr more often to prevent fallls. I thing there are pros and cons.
I think it depends at what stage of Ataxia you are and your hobbies. I cannot walk now so sticks would be no use now but I did use them for about 2 years.I have done things in stages.After all these are just tools to help.
It seems a different psychology for each stage.I am just getting my head around not doing the things I did in the past but my cognitive abililties have remained unafffected.If you have your mind you can just find another way around.Your mental health is just as important.
My wheelchair is there as a back-up and carers like to use a manual one to know where we are.I manage to wedge it in doorways and still get in trouble.I consider myself as a nuisance.I have no genetic link either. I think my father's parkinsons may be a very tenuous link but it might also be a red herring !!I prefer to think of it as Cerebellar degeneration.
I'd do whatever is comfortable and safe for your needs! I'm able to walk, although I use a cane to prevent falls and trekking poles for longer walks outside. It took me a long time to use a cane, as I wanted and "do it myself". Then I took a bad fall. Therefore, I started using a cane and have never looked back! ;o)
It sounds like a manual wheelchair would assist you with things like visiting others and places of further distances and would enable you to get out and about at your destination.
Shopping around (both online and in-person) for a manual chair that fits your needs sounds like a great plan. As mentioned, the best “tools” aren’t very shiny since they get a lot of use; doing some "pre-buying/researching prior to investing will help you get the best “tool” for you.
Someone also mentioned strength as a possible issue. Everyone’s different - including strength…whether it’s a matter of strength in your arms or legs to propel you in the chair and/or the strength needed to load/unload it in your car or truck. Since you already transport a scooter, this might not even be an issue for you.
For anyone else considering this, would a power-chair be an option?
Hi Michael, I've been using a power chair for 4 years now. You'll find it much easier to co-ordinate inside venues, shops etc and can even be used on the bus. I don't know what I'd do without mine. I did have a go in a manual chair but due to neck damage my daughter had to push me, which I couldn't handle. The power chairs are really easy to handle, if I'm having a shaky day I just hold the lever in the crook of my thumb and palm to stabilise it and off I go!! I've been on trains and buses on my own.
@Zhez: A powered wheelchair sounds great but I already use a mobility scooter for going shopping and other local travel. I think it would be a bit awkward for me to take a powered wheelchair oversees - within the UK would not be so bad but further afield could be. Thanks for the suggestion though - it is a good one that I can bear in mind for the future (if need arises).
@Mimi: I agree with the idea that 'Your legs will work until you stop using them'. However, as I stated, 'my ability to walk is deteriorating'. I do exercises each day to help keep my legs good and I do still walk short distances with my walking sticks as aid. What I find most interesting in your reply is that you watched your Dad as he progressed through the stages associated with CA. My dad has CA too and I, very much like you, have seen the deterioration of the health / medical condition of a loved one. I am not basing my own condition or its progress on that of my dad (though there are similarities).
@All!
I know that some folk see the user of a wheelchair as having 'given up on themselves' or as 'placing restrictions on themselves' through such use. I understand the whole 'use it or lose it' idea. I'm sure too that, in just a tiny way, I may have been thinking of the stigma some folk attatch to wheelchair use. All of that is why I was, for a long time, averse to using (or even buying) walking aids or a mobility scooter and why it has taken so long for me to ponder over the idea of getting a wheel chair. Ideally, I would not need walking aids, a mobility scooter or wheelchair - reality bites though! Besides that, I see the potential for liberation in having a wheelchair as it would help stop me giving up on such things as visiting family abroad, getting out and about away from my home town or even simple socialising.
The appropriate tool for the appropriate job and a positive attitude is probably the best way to go. That said, I thank you all (again) for the replies and (just to let you know) I will likely look at getting an appropriate wheel chair in the next month or so.
I have my wheelchair now and only use it when far from home. The chair is great on public transport and I am gradually getting used to it.
I'm hoping to go see family in Germany next year (I missed this year due to mobility problems) and will probably take some pics or have some taken of the wheels in action so to say. If I remember to do it, I'll post a link to any pics I put online. I have 'photo bucket' but no social media accounts as such. We'll see how it goes. :)
I can only thank you all again for the help and information.
I was thinking about posting a query about wheelchair use just this morning. I am starting to "reel" around the house and have to "wall walk" almost all the time. When do folks decide it is time for a wheelchair.? If I get myself out to the car, I can drive in familiar places, church, grocery, friend's house, etc. But I haven't figured out yet, as to "when is the time:.".
I think that for me the main reasons are in this thread! That said, I do not drive and will not as I think it too risky - shaking hands / arms and the occasional loss of conscience have helped make that decision for me.
I can manage my mobility scooter locally and it cuts out if I do so to say. For trips further afield I was walking as best I could manage with walking sticks but that has ,sadly, become much harder to do.
It is taking time to get used to my wheelchair but it is also somewhat liberating! So far, after getting my wheelchair, I have been on a weekend break with a friend, shopping for hours instead of a very short time in a nearby town and on a day out to a large shopping mall some thirty miles from home (twice). Without the wheelchair the weekend away would likely not have happened for me, the shopping trip to the nearby town would have been shorter by a long shot and the trips to the shopping mall would have been much more difficult (although I could have hired a wheelchair there).
When is the right time to get a wheelchair? The answer seems to be a very personal one. I hope at least that reading this thread is of some help to those with such queries.
Umigal said:
I was thinking about posting a query about wheelchair use just this morning. I am starting to "reel" around the house and have to "wall walk" almost all the time. When do folks decide it is time for a wheelchair.? If I get myself out to the car, I can drive in familiar places, church, grocery, friend's house, etc. But I haven't figured out yet, as to "when is the time:.".