Huntington Disease Lighthouse Families

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driving and pre motor HD

Posted by klivin 
driving and pre motor HD
July 20, 2011 01:49PM
My husband is still driving. He is early onset with depression and minor twitches. I am scheduling an assessment because I want to ensure his safety (I've driven with him and I'm not concerned) and others and get a baseline. Does anyone else drive at this stage?
Re: driving and pre motor HD
July 20, 2011 03:53PM
Yes. Many others. When his judgement and performance is impaired you will be able to tell. If he's just twitching, that's not a huge leap. I'd say from 0 to 10 he's at 0.2.

When he has difficulty keeping a constant speed, or he starts wracking up minor scrapes, or he complains that " people are running him off the road" that's when you can be assured he's having issues.

But if you are driving with him and you feel safe, IMHO you really don't have to worry yet. It's a very long road ahead.
eve
Re: driving and pre motor HD
July 20, 2011 04:17PM
My FIL was diagnosed in his 70's. Looking back, he likely was starting to be mildly affected in his early 60's. He drove almost until the end and did fine until about 4 years until his death. We knew when it was time. He would have extremely erratic speed. His foot would be on the gas and the motor would gun and race, then he'd take his foot off the gas and the car would almost coast to a stop. He would also weave around a bit, but that wasn't too bad. After he gave up his license he wanted it back. But luckily that didn't happen.
Re: driving and pre motor HD
July 21, 2011 07:57AM
That's the same symptom that I've seen with my wife and her sister. The first thing I noticed is that they could NOT keep a constant speed. They would speed up and slow down, but never peg it at one speed.
Re: driving and pre motor HD
July 21, 2011 08:37AM
that's my SIL right now. I fear for her and my nephew. She says her driving is an issue and that my nephew gets carsick when she drives. Ken right now seems to have few issues behind the wheel. He always has issues with using directionals when he thinks there's nobody around...but that's it.
Re: driving and pre motor HD
July 21, 2011 09:48PM
Can you explain the "pre motor" diagnosis? Does that mean no physical symptoms? My husbands driving is still very good. He is extra cautious and always leaves a lot of room between us and other cars - like if we see brake lights ahead he'll slow down before I would in the same situation.
Re: driving and pre motor HD
July 21, 2011 10:13PM
The pre-motor was explained by DT as just that. (I am not happy with her at the moment..long story) right now he has "mood disorder due to general medical condition" and of course "no physical symptoms of significance" I guess that's because the twitches in his toes and fingers. The paperwork also states that it "could be 10-15 years before motor symptoms appear.". He drives well...is very even keeled (more than me) and seems motivated to start to work part time. I am very afraid when I read others horror stories..but I have chosen to get myself meds to not obsess about it. We are heading to California on a big family vacation tomorrow. Maybe it will be the last one where he is doing this well..maybe not. I just want to enjoy it.
Re: driving and pre motor HD
July 21, 2011 10:40PM
no way to know whether it will or will not be but the likelyhood is that there will be many many many many many more very happy vacations and good times. getting used to this diagnosis is a process... there is no easy way to get used to the fact that your lives are not going to be what you thought they would be. The unknown is the scariest thing and an HD diagnosis is chock full of unknowns... it gives the "present" a new meaning, a new importance. Enjoy your vacation. try to give yourself a mental break and just live for a while and have fun. there is life after a diagnosis - it is a process to go through. There are scary stories here but also uplifting ones...
I am curious what happened with DT. PM me if you want to vent...

Have a great vacation!
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