On Vacation with ALS

Here I am vacationing with ALS.  On the trip east our van was packed with a rolling shower chair, a Sara Stedy, and a Hoyer lift.  Damn you ALS!  You see, I learned a few things from the trip to Boston last month.  Being comfortable takes a lot of preparation, packing, and equipment.

I had a terrible time with a lot of things when I was in Boston.  At home I’ve been sleeping in a lift chair, but vacationing forces me to sleep in a conventional bed. Since the Boston trip I bought a sturdy inflatable bed wedge for traveling.  Regular pillows don’t work for me because they flatten as I sleep.  In the hotel bed I sleep flat on my back and raise my legs about 45 degrees.  My husband has finally accepted that this is a comfortable position for me even if he looks at me strangely.

Working with an occupational therapist (OT) also helped us devise a method to get me out of the bed comfortably.  I had a phenomenal OT from Duke HomeCare and Hospice.  I highly recommend that any PALS (Person living with ALS) take advantage of OT and find things that work for you.

There are many things on this vacation I would like to do, but the reality is that I cannot.  It took us 3 days to find the accessible ramp so I could see the ocean.  Here in the Outer Banks the dunes block my view.  I think it is ironic that an accessible ramp was built and everyone uses it.  I’m find that I am getting selfish with my handicap accommodations.  The non-disabled have everything else at their disposal, can’t I enjoy a ride to the beach without having to move out of the way for you?  Yes, believe it or not, some people expect a wheelchair to accommodate them.

Today my husband asked if I wanted to cut vacation short and go home early because there were so many things I cannot do.  I had to lecture him.  I told him I was the disabled person and I would find things that I can do and want to do.  I spend enough time in my house keeping busy.  Now is my time to explore and show the world that ALS is horrible disease, but PALS keep on going.  What else can we do?

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