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Distinguished member
Sep 12, 2006
When do you stop? I can drive fine, my problem is getting out of the seat belt and turning the keys, due to weakness in hands. Any suggestions to my problems? I'm not ready to throw in the towel on driving. I was a mail carrier for 20 yrs. and losing my driving would be really hard. I'm just in a mood today, I can hardly be understood anymore and last night I went with my daughter to pick out flowers for her wedding and you just sit there and feel completely out of place. I have always been a talker, never met a stranger and now I concern myself with people thinking I'm rude because I can barely speak. It just makes you so angry and I don't know who to be angry at. I just want to scream sometimes. Anyway I hope everyone is having a better day than I am. Take Care Everyone, Rhonda
Edna May

Dear Rhonda I feel your frustration, I also have lost my voice, even my husband can not understand me, When in a group I sit there like a bump on a log, so much wanting to join in the conversation, I also have just stopped driving I miss the freedom of going places alone, if I had been living alone I would probably still be driving out necessity. that is why this forum is such a god send, being able to communicate with others that understand. I check in a couple of times a day just to feel a part of something. chin up EM
Hi Edna May,
Do you have a communication device? I got the lite writer last week on loan from the loan closet at the clinic. It helps alot at home with my husband, when I get over feeling embarrassed I will take it out with friends and family. You don't have to use the voice
if you don't want to. It's good for one on one. They tell me when I get approved for medicare that I can get a laptop and record one of my daughters voice on it. It won't be as bulky as the lite writer. We have to hang in here together. I still talk to my kids and grandbaby on the phone some. I wonder what that baby thinks, but she is a trooper,
she's 3 and she will tell me nana I can open it. She likes to play around some,not realizing she could hurt me, especially my right hand & arm. It's hard to explain to them that they could really hurt you. If your like me I never thought I would be up against
such a challenge. I thought my challenge of my lifetime would be raising 2 boys and a set of twin girls, 3 I have raised and my youngest is 17 and a senior this year.
Take care , Rhonda

I have come to the same issue, I use a power wheel chair and my left arm/hand are weak. I can transfer from the wheel chair to the driver seat and my right foot still works.
My family became concerned and said I should stop driving. I went to Courage Center for driving evaluation, and they recommend I add a spinner knob to the steering wheel to give better control. They also demonstrated that I could drive my wheel chair to behind the steering wheel and my foot could still control the gas and brake pedals. My reaction time on the pedals was like that of a 70 year old ( I am 46) but still legal to drive.

So until my arms become too weak, or foot too slow, they said I can still drive, just need to compensate for slower reaction times.

If you have the money, they even have controls for quadrapeligic using a joystick. Too expensive for me.

I plan to enjoy driving for a little while longer.

Hi Rhonda. I quit driving last October. I just decided it wasn't worth the chance of hurting someone else if my reactions were a bit slow. I wasn't worried about me doing anything stupid. I was worried about all the other drivers. I'm 57. As for the key , my nephew works in a machine shop and got a piece of aluminum about 3/4 inch thick and shaped it like an oval about 2 1/2 or 3 inches long with a slot in one end for the key and drilled a hole in it and put a screw in to hold the key in place. Worked great for me for about the last year I drove. You could probably get somebody to make it from wood if you wanted. You can also poke the belt button with it.
Hi Rhonda,

I think the individual is the best judge of when to quit. I've used a scooter for the past 3 years and a wheelchair rampvan. My legs are too weak to walk but I can operate the gas ok. My arms are weakening but I have no concern about strength yet for steering. I recommend a spinner knob and hand controls for braking. Both will extend your driving and safety. I just arrived in Arizona having driven 4000+ miles to get here. I never had a moment when I felt my ALS jeopardized my driving ability.

\Edna May

Hi Rhonda, Yes I have a lite writer, I got it last month & use it quite bit with my Husband, it is usually one or two words he can't get ( in my defense he has a hearing problem) but yes I like it. that would be nice if you can have your daughters voice. I used to have two friends that I could talk to on the phone but they can no longer understand me. it gets lonely some times, when you have so much to say & can't get it out. You are lucky to have a grand child, My two Kids are married but never had children.Nice talking to you. Keep smiling. EM
Hi Rhonda. I go back and forth on the driving issue. I still have strength to operate the vehicle but driving wears me out and leaves me feeling awful, physically. My arms shake from weakness and the effort to hold myself upright is a struggle. I don't know how much longer I'll keep it up but probably, like Al, I'll give up when it looks like I am at too much a risk for others. Good luck with your decision...Cindy
Hi Rhonda,

If your ALS has progressed to such an extent that it affects your ability to drive - and If you want to be safe and legal - you should contact your DMV and advise them of your situation. They will give you a driving test to make sure you can still drive safely. It will also indicate to your insurers that you are still capable of driving.

The risk here is that they might take away your license if you fail the test.

The bigger risk - if you don't do it - is that if you get into an accident - and your insurer learns of your condition - they could deny you coverage. Most policies require the insured to advise the insurer of change of circumstances that might affect the insured's ability to drive - this would include ALS.

Tough call - but if ALS is comprimising your ability to drive - could your family withstand a multi million dollar law suit stemming from a car accident in which you were involved and where your insurer denies you coverage?
Hi Rhonda

rcharlton is exactly right! I had to let my DMV know that I had a neurological disease so I had to be tested on a yearly basis.

I drove (with ALS) for about 6 or 7 years. I was quite arrogant about my right to drive. (I'm not saying anyone here is arrogant, this is my situation) I felt that it would be a cold day in hell before someone tells me I can't drive!

Then one day, I was driving my son somewhere and approached a stop sign. I knew to stop but my foot wouldn't move to the brake. I managed to stop, but with the nose of my van in the intersection. That incident, whether it was a lack of control or lack of reaction, was when I decided to stop driving. I could have injured my son or someone else because I was too stubborn to realize that my limitations had changed.
Anyway, I slowly drove home and told my wife that that was it!

I remember that like it was yesterday!(it was about 6 years ago)
Scared me to no end.
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