Someone always has to be on call for him at night, but the rest of them are night owls too, and there is often cooking going on at midnight, machines in use that make noise (the washer and dryer) so it's not that he's isolated by any means. It's just that nobody is purposely there for HIM, they're just doing their thing around him. No one but me will take hours out of their day/night just to sit and watch TV. When he loses his speech, he is comforted to have someone in the recliner nearby, no one but me has the patience for that. They'll help him when it's time for meds or other needs, but they're not interested in spending a lot of time just sitting. They interact when they're in the room, but it's not like when I watch the news or other shows with him, and we comment to each other about it.
They're busy, they have things to do, places to go, people to see. Their friends are always coming by, someone always dropping in. But they'll visit in their rooms, or outside.
They all have TVs in their rooms if they want to watch. Often everybody is watching different shows. The family room is now a semi-hospital scene, and we've had to move out a couch and a second chair to accommodate equipment. It really isn't convenient for more than one person to be with him at a time, and to be honest, it's boring as hell for them. They interact constantly when they care for him, when they cook and serve him, when they help him dress, but they are not interested in sitting and socializing on their off time.
The only friend that still comes around especially for him is Jeff, his boyhood friend. But Jeff lives 100 miles away now, and only comes down every few months. When he was alone, he would come more often, but now he's living with a lady and his visits have become less. He will stay with Mike and keep him company, but it's infrequent. He and Mike do speak on the phone several times a week, tho. God Bless Jeff. He understands there are times Mike can't speak, so he'll call again and not be put off by it. Many people are freaked out by Parkinsons. It's a very ugly disease.
When Mike's meds are working, he can get up himself with no problem. But when he is symptomatic, and that's many hours of the day and night, it isn't even comfortable to be in a chair, he needs to be in bed.
Parkinsons also has other symptoms besides the physical. As I mentioned, loss of speech. Mohammed Ali never spoke. Mike speaks sometimes and not others. Memory is a problem after you've had DBS. They warned me he might lose a lot of memory, and he has. He'll ask the same question a few minutes apart. The non-movement symptoms are many, and anxiety is one of them. Sometimes he's scared to be alone. I don't blame him, when you can't move and you can't speak or call out if you need help, it's damn frightening.
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