My Wife, Her Father, and Driving With HD
This past summer, I had to take my car to a mechanic. It had logged more than 122,000 miles and needed some major work done to it. My wife, Jill, went with me but she drove her car so I could leave mine at the mechanic’s shop, which was more than an hour away. We talked on the phone to each other as we drove there.
Jill is gene-positive for Huntington’s disease (HD), and she realizes that as her symptoms — such as balance issues, depression, paranoia, and a slowing of her ability to process information — worsen, she won’t be able to continue driving. She has said she doesn’t ever want to put someone else in danger because she wasn’t able to accept her limitations.
But during the trip, she cracked a joke — she said she hoped she would be able to drive her car until it broke down from old age. Jill’s car only has 6,000 miles on it, so the joke was that we both know this won’t happen.
She then relayed a story about two of her relatives and how differently they handled giving up driving.
She said her great-uncle refused to stop driving even after he began to develop cognitive issues and went to live in an assisted living facility. Eventually, his family sold his car and had his driver’s license revoked.
After Jill had received her diagnosis, this great-uncle leaned over to her one day and, pointing at their family members, told her that she will need to be careful around them — because they will one day steal her license away also.
But Jill’s father, who also had HD, had always promised his family that when the time was right, he would stop driving and give his license up willingly.
That day came when he was driving our daughter, Alexus, who is also gene-positive with HD, to the library after school while Jill was at work. He got into a minor fender bender at a stoplight that wasn’t even his fault, but the accident upset him deeply because he realized his mind was no longer sharp enough to deal with all the dangers of the road. Jill had rushed to the accident scene to be with them both, and she remembered her father telling her that he would not have been able to forgive himself if our daughter had been hurt, or if he had hurt anybody.
Jill drove them both home and that was the last day her father ever drove a car.
My wife respected her father’s decision then, and she vowed to me that even though Huntington’s may take her life one day, she would follow her father’s example. She wouldn’t let her disease take the life of someone else because she had been too proud to admit that she was unable to drive any more.
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Herwig W. Lange
Very thoughtful story!
Nancy Howell
My husband was recently diagnosed with late onset HD at the age of 75. His doctor told him he would have to stop driving. This has been heartbreaking for my husband. His 1957 Chevy Truck is his pride and joy. Driving represents freedom! I hope in time he can accept this loss and find peace as a non driver.
Carlos Briceño
i am so sorry to hear of how the loss of being able to drive has affected your husband. The sense of loss of having to deal with the disease and with the loss of driving -- and probably other things in life -- is probably immense. I feel for him -- and for you as you witness his sadness and deal with his disease. I hope, in time, there is some acceptance of everything you all are going through. My prayers are with you all.
John Alves
“Determined,”as we fog up the glass getting in his car, early morning jog.Kid,..”We don’t have anything if we don’t have our health!”A half a century ago.Dad would add that so much can be accomplished those early hours, He did go home “2014”…a few close calls. Willingly turned in his keys. This is my first attempt to engage by means of type,Dad and what can be accomplished early. I attempted earlier to gain insight about this 43 in a fully penetrant stage. I’m 55 and the VA assisted in my having the genetics done last year, I just put 7,000 on my auto and wonder how many more we have to go? Thanks for sharing with me John
Carlos Briceño
Thank you for sharing all that, John.