My ALS Adventure – September, October and November 2018

 

We decided to go on a long road trip while I can still walk.  My neurologist who had me hop on each leg thought I’d be OK for at least a couple more months, and the ALS clinic folks told us where we could get a folding walker and even a wheelchair if he turned out to be wrong.  

It would have been costly to rent an RV for a couple of months or more so it seemed better to buy one but it’s unlikely i’ll be able to use it next year so it wasn’t worth buying a new one.  A lot of online research followed by a day of driving around to inspect candidates led us to a 23 foot 1995 one whose layout we liked, that was in good shape cosmetically, seemed mechanically sound and was in our price range.

I built shelves in one of the coat closets, made a low fence for the sleeping loft over the driving cabin so we could store stuff there and not have it fall on us, installed a backup camera, fixed the loose supports on the roof ladder and assembled a box of tools.  We packed an assortment of clothes because we’d be in hot, cold, wet and dry areas.  Felicity got a big collection of maps and guide books from AAA.  And then there was all the other stuff that we would or might need.

After a few days delay waiting for additional supplies of my medicines we set off on September 6.  First stop was Pittsburgh because Felicity wanted to visit an art museum there.  We decided each next step pretty much day to day.  Friends had already suggested several places we should visit and we hoped for more suggestions along the way.

Our only firm plans were to stop on the West Coast to visit Doma and our friends who are hosting her, see my cousin from England and three or more friends there, and visit my cousin and his family near Atlanta who I’d never met.  The only schedule was to be on the West Coast in the first half of October when my English cousin would be there.

I decided to email my family every few days so they wouldn’t worry about us.  That turned out to be like writing a travel journal but more enjoyable because I was thinking about what they might find interesting.  I’ll now assemble them into lightly edited posts to give a sense of what intrigued me about the very different environments we visited, and continue my effort to share the experience of my ALS progressing 

I lost strength during what turned out to be a 10,000 mile, three and a half month journey but I didn’t need a walker.  Felicity persuaded me to start using a hiking pole for balance toward the end although i’m not quite at the point where it’s really necessary.  I do need a neck brace, though, because my neck muscles are too weak to hold my head upright by the end of the day. 

Felicity kindly let me drive the whole way because that was the one physical activity where I still feel the same as I always did.  I’m not having trouble accepting my slow weakening but doing anything I’ve always enjoyed still is enjoyable.

I hope you’ll enjoy Road Trip Chapters 1 – N and I hope they’ll be helpful if you have ALS  or if you know someone who is living with something similar

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