Full-Time RVers, husband just diagnosed

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DreamsEnd

Distinguished member
Joined
Jan 24, 2014
Messages
449
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
AZ
City
Cottonwood
My husband's attitude when told was I have had an incredible life with experiences most people never have. His second reaction was when he gets to where he can't move around by himself I can just grease him up and slide him around.

We're doing our best to stay in today because that's all any of us have but to also be realistic and plan ahead.

We started the full time life in our RV in May of '13 at 70 years of age. I'm going to go to a RV Driving school so I can handle our big Dually truck and our big fifth wheel RV. We want to continue as long as we ca. See an ALS Specialist at UCSD on 2/27/14.

We're fortunate as he is retired Navy so great insurance and we are in process of filling out VA disability app which we understand will be fast tracked.

Any other PALS who RV?
 
We RVed but not full time....last time out July/2012....had to sell....USA-RET 4/1973....work through PVA at local VA Service Center....DXed Feb/2010....anything I can help you with?.....have done a lot of research...please consider signing up as a volunteer for drug trial research....I have done two trials, both benefited me.....are you on face book, if so maybe we can find a way to hook up...TAKE CARE
 
We RVed but not full time....last time out July/2012....had to sell....USA-RET 4/1973....work through PVA at local VA Service Center....diagnoseded Feb/2010....anything I can help you with?.....have done a lot of research...please consider signing up as a volunteer for drug trial research....I have done two trials, both benefited me.....are you on face book, if so maybe we can find a way to hook up...TAKE CARE

Pear shoot,
Thanks for your post and offer to help. We have contacted a PVA at a local VA Service Center. Need 2nd opinion, which we're getting Thursday. It's good to know both trials helped you. He'll see what they propose. He has to get nerve test also as kind original neurologist said they will want to do their own study so I don't want to put you thru that twice.I am on Facebook but DH doesn't want ALS postings there yet.

Where are you located, we're about an hour out of San Diego now....
 
My husband was diagnosed just a couple weeks before yours, and we received his new rating this week. Things may have been faster for us since it was the VA that diagnosed him. Since the rating was updated, I've had trouble keeping up with the VA--they've been wonderful so far. I hope you are able to get real enjoyment out of the RV. I know how difficult it is, but we are also trying to enjoy our mobility while we have it.
 
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