Re: Hand controls

[Guest guest]

Hi Jo,

My pleasure! It is so great that we on this list can share and help

eachother... Are you the Jo who is in the UK? I get a bit confused

here, because there's so many new names for me here since I have been

away from the list so long...

Don't you have a quite good system for coverage of adaptations in the

UK? Or? I really, really think you should think a lot about which

options you go for. With the problems you describe, I really think

you will have problems with the ordinary hand controls that often is

used by people with paralysis of their legs. Most of these people

have really strong upper bodies, so it is easy for them. I tried two

of these options, one you push back and forth, and one that is much

as the gas on a motorbike. I had no chance of using it. And my

shoulders really aren't anywhere as bad as many of you guys. I really

think you have much more problems with your shoulders than I have. My

shoulders have mostly subluxed and I have had one full dislocation.

In addition to that I have psoriatic arthritis and get inflammations

because of that.

I would try to consult with an OT who specializes on car adaptations,

if I were you. Ask around for one where you are. Here in Norway we

have a center specializing on more special adaptations, for people

e.g. with high paralysis (e.g. broken neck), CP etc. and also

disabilities who require extensive joint protection, as EDS etc. They

recommend these extensive adaptations for people with EDS. And if you

have the opportunity of getting adaptations covered, you should

really look into such options. On my previous car, I got a system

with a ring with speed/brake on the steering wheel, but I had no way

of using it. It was a complete mess, because the people who helped me

pick it, did not know about all these other options, or they simply

did not tell me about all options. They showed three options, two of

them were the other ones I mentioned above. But the minute I came to

people who knew about EDS and which things to consider there, things

changed dramatically. With a car like I have, you can be very

severely handicapped, or just had surgery, and still be able to drive

safely. But, it is a sad fact that these adaptations are very

expensive. So if you have to pay out of your own pocket, it may not

be that easy.

But it may not be that expensive to get an electronic joystick for

gas/braking, and combine that with making the power steering extra

light (easy to do) and with a ball with switches on it (you need

that to use the steering wheel and and switches with only one

hand)... But if the large movements that is required with a normal

steering wheel is a problem for your shoulders to do with only one

hand, then a mini steering wheel and a good armrest makes a huge

difference. The tiny steeringwheel is called a horizontal steering

system, and because of the different angle and how it sits at the end

of the armrest, it is so easy to use. You can also get a joystick

instead of that one if that is preferrable. I tried one of these too,

and could choose myself, but I liked the steering wheel the best. I

asked them not to have the ball on the mini steering wheel, because I

had real problems using that. My fingers kept locking up and it just

felt difficult to do. Instead I myself invented another option and

they made it for me, and it works wonderfully. I made an impression

of my hand in play dough, and then did some changes to that, so that

it has higher edges between the fingers, between the hand and the

fingers, almost as the sole of a Scholl or Birckenstock shoe, if you

get my drift. So when I drive, I just place my hand into that mold

and move it. I have no need for gripping or anything like that at

all, my hand lies comfy in the mold. It is so easy to use... For the

same reason I want to get rid of the ball on the joystick. It also

becomes so very slippery when it is hot outside, I have no AC in the

car. So I will probably go for the thingie with the " poles " sticking

up, you have two poles on each side of your wrist and one to grip

around. Then you just push and pull to gas/brake. Easy... The

joystick for gas/brake is just a two way one, as you are not steering

with it. You can get both steering and gas/brake on one though, then

it is a 4 way one just as on a power wheelchair, only it is

" backwards " (brake forwards so that you can't accidently push it and

make the car move).

The best thing is if they had such a center where you are too, then

you can come there for a meeting and test. First you discuss

different options, together with me were a representative for the

most likely company to do the job, an OT and a mechanic, both

specializes in car adaptation. Then after discussing different

options, we went out in a special test van who had all options in it

which they could switch between, and tried the options we thought

could be something. After testing we went back into the meeting room

and discussed conclusions, which ended out with the things I have in

my car now. One thing they had into that, was a bit funny. My back

seat. It is not a back seat meant for passengers at all (even if it

has the standard seat belts), but it is a resting bench... Meant for

me to lay down on...

When my car was ready, I had to have some hours with a driving

teacher, to learn how to drive with it safely, because it is after

all quite different from driving an ordinary car...

Good luck to you!!!!

Aase Marit

>Thanks for the info and links Aase. My only hope of driving is going

>to be using hand controls but I have to confess I've been concerned

>over whether my upper body will be strong enough too. As I have

>recurrent hand, wrist, elbow and shoulder dislocations and I'm

>currently awaiting recon surgery on my left shoulder. The links you

>gave might just offer some hope to me of finding a managable system

>for my restrictions.

>

>LOL - watch out Schumacher here I come! Seems kind of strange doesn't

>it...I'm a freelance motor sport writer and I can't actually drive

>right now! Which remind me I should try and get some rest as I have

>F1 qualifying to cover at 2am...

>

>Thanks again, hope you are well :-)

>

>Love and hugs

>

>

>

>

>To learn more about EDS, visit our website: http://www.ceda.ca

>

>

[Guest guest]

Hi Aase Marit,

Yes, I am Jo in the UK and I know what you mean about losing track,

I've only been here a short time so I'm still getting to know people!

Thank you again for your information and help regarding hand

controls. The links and data about the systems that are easier on the

upper body are going to be really helpful to me, as I honestly don't

think my upper body strength is going to be up to the normal systems

sadly. But I am determined to get driving! I will spend some time

looking into the options and getting advice form where ever I can.

I'm actually spending a week in my EDS specialists hospital soon for

physical and occupational therapy assessments, so it may be something

I can ask them about too. as they are very keen to find adaptations

to make life more manageable for me. here's hoping that along with

the wheelchairs and stair lifts they have a booklets for car controls

too! :-)

I am glad that you have received so much help and advice form your

centre and have found a system that works for you. It is so

liberating to have transport and the freedom to drive places yourself

isn't it? It frustrates me so much having to rely on people to get

anywhere. That's not to sounds ungrateful for everything they do for

me, it's just hard having to plan everything I do around other

people's schedules. I long for the day I can decide to do something

and just get in a car and go do it again. I guess the only downfall

for me may be the costs as I'm a poor freelance writer rather than a

fabulously wealthy author - although I'm working on it! Either that

or finding a single, handsome millionaire of course! I will have to

look closely into what provisions and help their would be for getting

the special adaptations I would need and how much it may costs me.

Fingers crossed I wont have to raid my local bank hee-hee!

Anyway thank you again for your help and support, I really appreciate

it. Please take care and know I'm thinking of you.

Love and hugs....Jo

xx