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codyclan

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Joined
Jan 26, 2014
Messages
402
Reason
Lost a loved one
Diagnosis
02/2014
Country
US
State
VA
City
Round Hill
My hubby is bulbar onset and is currently in a slide. He still drives, but his shoulder, hand and neck weakness are becoming more debilitating. His breathing is impacted and he has a lot fatigue. We have planned a trip to Germany and Austria with our two adult daughters and to see a close friend who lives there. He refuses to use a chair or a scooter and I think that will impact his ability to enjoy the trip. The other issue is that our 23 year old daughter just accepted a job back in the DC area to be near to us. She will be driving back from Colorado on the 10th and we live the 16th for Europe. He adamant that he wants to drive back with her. However, if he does, I don't think he will be able to enjoy Europe at all. He is upset that I am 'taking this away from him'. I hate this disease!
 
>He refuses to use a chair or a scooter and I think that will impact his ability to enjoy the trip.

rent a power chair! find a neck brace ... have fun!



Max - Friday, June 26, 2015 9:53:50 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.
 
We all do.

Tell it to him the way you wrote it. Remember your "I" statements. But since you're fighting two battles, I'd pick one -- a scooter or whatever would work best with his abilities in Europe. I'm sure you can rent something there. The drive from Colorado with his daughter -- I understand why he wants to do that. Could you do one for one?
 
That's a good idea. I hadn't thought about the 'one for one'. He overestimates what he can do and then needs help and his pride is wounded. I found a scooter rental place in Berlin, so I have one already in 'reserve'..
 
Codyclan, this has been discussed in past threads but----as you describe your husband's weakness in the neck, hand, etc. his continuing to drive puts EVERYONE at risk. If something happens you could lose everything if you are sued and he drove with ALS. We all understand taking away driving is a horrible loss but..... Our daughters convinced my hubby to stop driving by emphasizing that I could lose everything, and fortunately, he loved me enough to stop. This may be a question to pose to your doctor if someone else could make a bigger impact.
 
Renting that scooter is crucial. When my husband was at the beginning of bulbar onset, we rented one in Disney World even though he could walk absolutely fine. His doctor was adamant, said it is imperative to conserve energy as that is what leads to more rapid progression. That road trip will take it out of him, too. The key is to use as little energy as possible, no matter what. Good luck!
 
Thanks ECapra. I am reserving a scooter for Europe and having it delivered to the hotel so that it is there when we arrive. Being bulbar, he is still walking well. He has always been one to push himself, so getting a scooter feels like giving in, I think. Hopefully, once he starts using one he will realize how much more he can enjoy, instead of the other way around. Thanks for the encouragement!
 
I had driving "taken away" from me several months ago. I grieved, and resisted, but then I was asked if I wanted someone else to be hurt ( I really didnt care about myself). Also the financial point is well taken, insurance companies will not pay if they find out you were driving with a neurological disease, your family's future could be ruined.
 
try reminding him that a scooter does not carry the stigma a power chair does. when you are in a scooter, no one knows if you have bad knees, ALS or COPD. shoot, even pregnant women use them! my husband loved his and enjoyed so much with it. (it also made the transition to PWC easier for all of us)
 
Good point, Barbie! Thanks!
 
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