I've been reliant on a wheelchair outdoors for about... six years, but now I would call myself a full time wheelchair user. Because of all the time I've spent using a wheelchair you'd think I'd be good at it, but I'm really not. It takes me ages to get anywhere and anywhere with a slope is a no-go. I have to ask someone to help all the time, so I can't go out in my manual chair on my own. I don't think my problem is a lack of strength as such, it's more technique. And it annoys me that a lot of what holds me back may be a lack of knowledge.
I've been searching for groups that teach wheelchair skills and all I can find is organisations that teach children (I'm 24) and organisations that teach people with spinal cord injuries (as my ataxia is not confined to my legs I'm under no illusions that I have the same potential). Does anyone know of any organisations or been somewhere to learn wheelchair skills? Was it helpful?
I figure one day I will be wheelchair bound and have even thought about little things like reaching door handles, light switches, and stove knobs from a wheel chair. I have also wondered if and how someone with Ataxia can "drive" a wheel chair. Hubby hasn't let me drive the car in over a year, as he thinks I drive as a drunk. (I think he is over reacting, but has a point) The loaded shopping cart is harder and harder to control. Hope some one has some pointers oln this. You might learn something from a course meant for children if you are allowed to enroll--any advice should be welcome.
Great question! I have had all manner of Physical Therapy, including 3 weeks in a Rehab Hospital, after my last (of three) brain surgeries which, along with a diagnosis of hydrocephalus, brain shunt and 30 radiation treatments to my cerebellum and brain stem, resulted in yet another turn of bad health luck- Cerrabellar Ataxia! I have learned everything from these PTs or their PTA’s
Registered Physical Therapists, esp. those with a Doctorate, know how to expertly train us in most every aspect of mobility. Indeed, when I am out- either with my cane or my walker/wheelchair - I cannot help but notice the preponderance of older/debilitated people (it’s Florida), who are misusing their mobility assistance devices improperly and/or walking in an inappropriate or dangerous (fall risk) way.
I’d try to find a PT group in your area. Even as a life-long clinician, I had no clue re these resources were so valuable. Good luck to you. Please let us know how you do. Ellen
Hi Willow:-)
I googled wheelchair training, there are several types of courses available
here in the UK.
You live in the Midlands, Invacare of Salford may be of some assistance.
(Apologies if my sense of geography is a bit out xB
I live not too far from a rehab hospital, and have wheelchair training. Another option is go to a couple physical therapy. A PT will also give good strategies. I am 30, so I am a bit more adventurous than a kid, so YouTube is a great source. Many rehab hospitals post videos of both basic and more advanced Wc skills. Word of advice from experience fear majorly will keep you stuck in your comfort zone. Don’t be afraid to fall, as you probably will. If someone always picks you up, then you will never learn how to get yourself up. Message me if you want and I can give advice.
For me (at least at the moment), things that are within standing reach are not that much of a problem because as long as I have something to hold on to I just stand up. Of course, that means I can only use one hand, but for dials/light switches etc. that's okay. To be honest, using a wheelchair enables me to do more than I could a few years before I started using a wheelchair. If I had anything new where I live I would probably get things like stove dials lowered, but unless light switches are really high, I don't have a problem using them while I'm seated.
I think this page shows that you can use a wheelchair when you have ataxia. I mean, granted, I'm not very good at it but not because I can't control the wheelchair. The only thing I can think of is that with ataxia, it's harder to learn where our physical boundaries are without looking. So it takes me a while to get used to a wheelchair and stop crashing into everything. But that might just be me.
granny h said:
I figure one day I will be wheelchair bound and have even thought about little things like reaching door handles, light switches, and stove knobs from a wheel chair. I have also wondered if and how someone with Ataxia can "drive" a wheel chair. Hubby hasn't let me drive the car in over a year, as he thinks I drive as a drunk. (I think he is over reacting, but has a point) The loaded shopping cart is harder and harder to control. Hope some one has some pointers oln this. You might learn something from a course meant for children if you are allowed to enroll--any advice should be welcome.
I've been told repeatedly that I'm stupid but I don't trust powered wheelchairs. I have one and I am so grateful for it (I wouldn't have gone to university otherwise) but I can't get over the fact that if it stops working (which it has done twice before but it thankfully restarted) then I'd be stuck. So I use it when I have to, and I'd like to use my manual chair more.
I have a feeling that if I were in Florida I'd be one of those people. Probably one of the worst!
Thank you for your reply - and the luck.
Ellen said:
Dear Willow,
Great question! I have had all manner of Physical Therapy, including 3 weeks in a Rehab Hospital, after my last (of three) brain surgeries which, along with a diagnosis of hydrocephalus, brain shunt and 30 radiation treatments to my cerebellum and brain stem, resulted in yet another turn of bad health luck- Cerrabellar Ataxia! I have learned everything from these PTs or their PTA's
Registered Physical Therapists, esp. those with a Doctorate, know how to expertly train us in most every aspect of mobility. Indeed, when I am out- either with my cane or my walker/wheelchair - I cannot help but notice the preponderance of older/debilitated people (it's Florida), who are misusing their mobility assistance devices improperly and/or walking in an inappropriate or dangerous (fall risk) way.
I'd try to find a PT group in your area. Even as a life-long clinician, I had no clue re these resources were so valuable. Good luck to you. Please let us know how you do. Ellen
Do you have a different google?;-) I'm going to continue searching tomorrow. You actually just googled "wheelchair training"? No other key words?
Thanks!
Beryl Park said:
Hi Willow:-) I googled wheelchair training, there are several types of courses available here in the UK. You live in the Midlands, Invacare of Salford may be of some assistance. (Apologies if my sense of geography is a bit out :-) xB
I don't know whether it's because I've had ataxia all my life and so they don't think I'd be interested in any training, or because they don't think I'd be capable of training, or because they're just not very good in general, but the local rehab services to me are useless. It was a struggle to get a self propelled chair. And when I mentioned training later on they just looked confused.
I stopped seeing a physiotherapist around about the time I started using a self propelled wheelchair (I initially started using a wheelchair after surgery so people used to have to push me around for a while. I recovered my balance enough to walk around indoors, and then I asked for an upgrade). So that's a good idea.
I've ordered a new wheelchair and it should be ready in a few weeks. You might be bombarded with questions when it's ready:)
Thanks for the advice, I'm now going to scour youtube.
Liz Weeks said:
I live not too far from a rehab hospital, and have wheelchair training. Another option is go to a couple physical therapy. A PT will also give good strategies. I am 30, so I am a bit more adventurous than a kid, so YouTube is a great source. Many rehab hospitals post videos of both basic and more advanced Wc skills. Word of advice from experience fear majorly will keep you stuck in your comfort zone. Don't be afraid to fall, as you probably will. If someone always picks you up, then you will never learn how to get yourself up. Message me if you want and I can give advice.
It's probably obvious to a lot of people but I never thought about the way I propel my wheelchair. I push the wheels forward and keep my hands at the front of the wheel, and I only move my hands (by moving them over the wheel rims)to the back of the wheels when I need to push forward again. And I wondered why my chair wouldn't move fluidly! I always start relatively quickly and then slow down before I have chance to propel myself forward again. duh!
willow, dont lose heart. I was not born with ataxia, so regaining some semblance of normalcy has been important to me. There are so many products that make life in a wheelchair easier, i.e. light switch extenders, etc, but trial and error unfortunately seems to be the tried and true method to getting what you need. I will offer any advice whenever I can.
willow said:
I don't know whether it's because I've had ataxia all my life and so they don't think I'd be interested in any training, or because they don't think I'd be capable of training, or because they're just not very good in general, but the local rehab services to me are useless. It was a struggle to get a self propelled chair. And when I mentioned training later on they just looked confused.
I stopped seeing a physiotherapist around about the time I started using a self propelled wheelchair (I initially started using a wheelchair after surgery so people used to have to push me around for a while. I recovered my balance enough to walk around indoors, and then I asked for an upgrade). So that's a good idea.
I've ordered a new wheelchair and it should be ready in a few weeks. You might be bombarded with questions when it's ready:)
Thanks for the advice, I'm now going to scour youtube.
Liz Weeks said:
I live not too far from a rehab hospital, and have wheelchair training. Another option is go to a couple physical therapy. A PT will also give good strategies. I am 30, so I am a bit more adventurous than a kid, so YouTube is a great source. Many rehab hospitals post videos of both basic and more advanced Wc skills. Word of advice from experience fear majorly will keep you stuck in your comfort zone. Don't be afraid to fall, as you probably will. If someone always picks you up, then you will never learn how to get yourself up. Message me if you want and I can give advice.
Willow, all I put in was ’ wheelchair training course’, possibly adding UK.
Quite a few options came up
I don’t use one at the moment but after reading posts I’m now terrified of
losing fingers in the spokes!
Rehab services seem to be so variable, sometimes I think it very much
depends on the person you have the appointment with and whether you
have a good rapor with them. Not that it should influence the outcome.
You do have certain rights, keep at it till you get what you need xB
Ps. Don’t forget, AtaxiaUK will act as an advocate should it be necessary
Beryl, please don’t worry about that, thE spokes are a soft metal and common propulsion is no where near fast enough to cause damage. The rim nubs just make gripping easier.
Beryl Park said:
Willow, all I put in was ’ wheelchair training course’, possibly adding UK. Quite a few options came up
I don’t use one at the moment but after reading posts I’m now terrified of
losing fingers in the spokes!
Rehab services seem to be so variable, sometimes I think it very much
depends on the person you have the appointment with and whether you
have a good rapor with them. Not that it should influence the outcome.
You do have certain rights, keep at it till you get what you need xB
Ps. Don’t forget, AtaxiaUK will act as an advocate should it be necessary
xB