What Kind of Wheelchair Control should I choose? Which would be suitable for me?

Katherine Hayward

I have spastic quadriplegia CP, and I'm saving for a new powerchair. The thing is, I have trouble pressing buttons accurately, my arms, wrists and hands seize up due to spasticity , and cause me immense, constant pain and always have done although I exercise with help . I have spatial awareness issues (I can't judge distance, speed and depth) coordination problems muscle spasms and tremors. I require the person with me to drive the chair. I can
just move my head at times.
I find the screen on an R Net control hard to see, and using a joystick requires too much precise movement. I want to find a control that means I can be more independent and control the chair more myself, I also have tunnel vision, and can see things that are right in front and level with my eyes. I am considering getting an attendant control aside from the control I buy.

Noah

Don't give up trying to find the chair/mobility aid that gives you the greatest possible independence. Well done. I'm sure you will find something that works for you with a bit of perseverance. I read recently about a wheelchair that was controlled by someones mouth, I've also read about brain controlled chairs. Maybe something can be done to make the controls more manageable for you. With your vision difficulties, it sounds like you need the driver less car version of a wheelchair. Depending on the severity of your spatial awareness, maybe its about also focusing on mobility aids that are not too wide or large to try and make them easier to maneuver independently. All the technology is out there to make it possible to have a wheelchair that basically drives itself. Guess something like that would have to specially made, and would likely be quite expensive. For people that can not drive due to difficulties with their vision, driver less technology is soon going to transform their lives. So much is possible. Dyson have just reveled a robotic hover that learns the surroundings, i'm sure the same principle will be incorporated into a mobility aid for the visual impaired before too long.

Katherine Hayward

Hi Noah, thanks for your reply. My spatial awareness problems are severe. That option sounds interesting, but it does sound like it would be really expensive.

Noah

Your most welcome. It may not be as expensive as you think, and technology often gets cheaper the longer it has been available. At the end of the day, if it gives you greater independence and a better quality of life, then any extra cost is normally worth it. There are probably ways and obtaining, cheaper or getting some grant money to help. First, of all its about finding a chair that is suitable for your needs. Are there any specialist in your area, you can arrange to talk to? We have a wheel chair service via the exeter mobility centre where I live. From my experience, the wheelchair technicians, enjoy a challenge, and if you go to them with some ideas of what would be your ideal wheelchair to give you the greatest independence possible, they will work with you. They understand that everyone is different and one size certainly doesn't fit all. Another idea, would be to try and attend one of the disability exhibitions to see in action all the latest mobility technology available. Keep us posted on how you get on.

All the best

Katherine Hayward

Hi Noah, I have already attended Naidex a few times, and that was useful, and they had some models of chairs I like. the only thing was I can't transfer into a chair on my own, and when I told them, the people at each equipment stand said they couldn't help with transfers as they didn't have the manual handling skills or equipment. so, I just saw the chairs from a distance, which was a disappointment. it's very different seeing a chair to physically trying it out. I was recommended Permobil, but there's the cost factor behind that. I've looked at chairs by Invacare and Sunrise Medical too. I'll let you know how I get on. the only thing is, there's a waiting list for wheelchair services. I've been to wheelchair services in Oxfordshire before, and all they did was measure me for chair width, and say they didn't have enough money so they gave me a basic manual chair which is useless to me and I can't use because I can't push a manual chair. they, and the physio I was with at the time, told me they realised an electric chair would be better for me but they couldn't fund it, and that the manual chair would be good "in the meantime." it doesn't have the positioning I require, and like I say I can't push it myself, so what use is it to me?none. All I got from them was a list of powerchair providers in my area. I have been trying to save the money up since. I contacted some charities but they said they didn't have the money. I really feel I'm missing out on a good service here, and severely compromising my needs by not being able to access what I need. I have thought about Motability but as I need the chair all the time, renting is a costly option for me. should I go back to the wheelchair service or see an OT again? I'm not sure whether going back to the wheelchair service will get me anywhere. I went to my GP and then to a neurologist and asked to be re referred to the wheelchair service, he refused to refer me. Am I going down the right track with this? I contacted wheelchair manufacturers, and their answer is "we don't sell to the public, ask your technician." I need to get a technician and people capable and willing to help me, because I have found that going just on a salesperson's advice, I have made the wrong purchases although I know my needs well because of what they offered me.
I feel I was short changed in the assesment at the wheelchair service, as they didn't take into account my posture, comfort, needs to control the chair, and to have a chair that's right for me, instead using the excuse that there are cutbacks and I'm "not disabled enough" for some things. that's ridiculous.
another post I wrote here about problems with a technician outlines all the problems I had with the last one, who hasn't got back to me. during the assesment at the wheelchair service, I was with a physio, but she just stood back and let the wheelchair service technician
measure me (just for chair width, no other measurements) and gave no input whatsoever or asked no questions about my needs. none of them did in fact.

Noah

It sounds like you need to contact wheelchair services and ask for a review appointment, explain that you would like a review appointment, as your current chair setup is not suitable.

If wheelchair services have supplied you a chair already, you will be on their system and should be able to request a review appointment, they understand that peoples needs change with time.

It would be an idea, before your appointment to write out all the the relevant points that need to be raised during your appointment, this helps you, get clear in your mind everything, and communicate it clearly to the technician. 

Try and a make a list as simple and clear as possible with  bullet points etc. It maybe helpful to get an OT or a friend that understands your needs well to read through your notes before the appointment, to help keep it as too the point as possible.

It is worth focusing on how this mobility device/aid is going to improve your independence

And 

What are the risks to you, or others, with not having the correct mobility device for your individual needs.

Lots of people find it helpful to rent mobility equipment for a short period of time so they can establish if it fully meets their needs before making such an expensive and important purchase. As it is one thing, trying out equipment at a show or in a shop with the sales person telling you how amazing it is, and quite another, to have it home in you own environment to see if fully meets all your needs.

Another idea, is there is a very large amount of second hand mobility equipment available which you maybe able to obtain - this is something that can be explored if funds are tight - once the exact specification of the chair that meets your individual needs is decided on.

 

Hope the above is of some help,

Keep us posted on how you get on,

Noah