Huntington Disease Lighthouse Families

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Weekend with my brother

Posted by Sister 
Weekend with my brother
May 16, 2010 10:05PM
Although he can barely walk without falling backwards (and he's taken some pretty bad falls, but as yet without broken bones), my brother was willing to go with my sister and me on a houseboat for 3 nights and 2 1/2 days.


My brother dug out his fishing equipment, cold weather clothing, sleeping bag, and was all ready to go hours before we could leave town. The marina location was 1 1/2 hours away. He was confused about some of the details, like how we could just boat away for days with someone else's boat. But he managed to deal with the depressing moments when he wasn't sure what was going on, times of incontinence, and failure to catch any fish when others around us were involved in a fishing derby. He has problems sleeping even with prescribed sleeping medication, and then has a hard time becoming alert in the morning.

In spite of problems, we had moments of side-splitting laughter, peace and closeness. We had to plan carefully to help my brother be as comfortable as possible - we brought extra clothing, and allowed him plenty of opportunities for privacy. We had spoken with marina staff in advance, and they had people on hand to help us load/unload supplies. My sister understood that my brother uses television to help put him to sleep. No TV on board, so she brought a portable DVD player and some old westerns. He fell asleep each night listening to John Wayne and Glen Ford. We had some tense moments, but this was a trip of joy for each of us. I'm not sure what our next adventure will be because we have to revise popular activities to accommodate our changing conditions (my sister and I are now in our 60s - smile). We continue to love and cherish each other.
eve
Re: Weekend with my brother
May 17, 2010 09:28AM
How very nice!
Re: Weekend with my brother
May 17, 2010 01:51PM
I'm glad you had a nice time overall. Your brother is lucky to have both of you. You are all lucky to have eachother.
Re: Weekend with my brother
May 17, 2010 03:35PM
I'm sure you will cherish moments like these.A lovely time by all!smiling smiley
Re: Weekend with my brother
May 17, 2010 03:42PM
Sister,

What a gift for you and your family. Memories to hold and cherish. Whatever we can do to keep on living life is a blow against Huntington's. Our family took a vacation in March and it was so wonderful to be together. So happy for you and yours.

Carla
db
Re: Weekend with my brother
May 18, 2010 04:23PM
That is an encouraging post . Thanks. db
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