Sunday we attended the Walk to Defeat ALS. This year 23 people walked as Team Shaggy to support Jim's battle with ALS. There were over 1,000 walkers in all. We had a beautiful day at Progressive Field. It was a lot of fun. We had two families from the PTA join us. Colleen, her huband Adam and son Tyler also walked in honor of Colleen's grandfather who lost his battle from ALS when Colleen was young.
A new found friend, Sherry, her husband Chris and son Christopher also joined us - I just met Sherry 3 days before the walk at the PTA meeting.
Our friends Jim and Tina ran into an old friend/neighbor while at the walk - she is now fighting her own battle with ALS. Small world.
Our other team members included my mom, my sister Jenny, brother-in-law Chad, and their boys Charlie and Brenden, Chad's friend Dave and his son, my long-time friend Cathy and her daughter Dana (who was also flower girl in our wedding once-upon-a time) and longtime friends of my mom, Cathy and Pete.
Up until last night I would tell you Jim was doing pretty good -
Last night Jim couldn't figure out how to get into bed. I was watching him just stand next to the bed staring at it. He had his hand on his pillow and just had a blank look on his face. I asked 3 times what was wrong. He insisted nothing. Finally he admitted he couldn't get into bed. He couldn't get his legs to move right. I could see the "gears turning" to try to do it. I really don't think the problem was with his legs - I think it was a "trigger" problem with his brain. I finally got him turned around and kinda "tipped" him into bed (he wouldn't or couldn't sit either.) He is doing better today - though he slept most of the day. He says his head didn't feel right. I was going to call the doctor but decided against it. I know our primary physician can't help - and really all the neurologists will say is that's they way these diseases work. I am sitting here with him now - and he is pretty much back to normal now. (Or at least as normal as things get now.)
This is just a more obvious issue added to a laundry list of small changes. Jim can no longer cut his own food. I bought him a special knife but he gets aggrivated and gives up. He can not work his fingers enough to do buttons or fine-motor skills like that. I took him suit shopping last month and learned one thing - suits are NOT made handicapped friendly! The salesman finally helped us find a pair he could do the clip on - but never the button. He decided that was fine - even laughed that if I wasn't their "mommy would have to help him."
We lost his Grandfather on August 25 (thus the suit). One of the sweetest people I ever knew. Good news - Jim took it well. Bad news - I am unsure why. He and his grandfather were VERY close. Jim was probably the only person Grandpa recognized consistently the last few months. Though it was a relief that Grandpa's suffering ended - it was also evident of Jim's loss of emotion. He handled the services very well.
