Minutes later, he emerges from the basement where he has been fiddling around on the workbench. All dangerous tools have been removed. When she checked on him earlier and gave him the dinner call, he was lost in a mysterious task involving duct tape, his walking stick and a screw driver. Best not to enquire, she has learned.
He falls hard at the top of the stairs. She masks a wince, never having gotten completely used to the many tumbles he takes every day. Lately they have been harder, more severe, though, miraculously, he still never hurts himself. His kneecaps are leathery, misshapen and thick. He lunges toward his wheel chair parked at the table. Thankfully, one of them had remembered to put the brakes on it earlier.
Seating him can be a problem some days. Tonight he has perched on the edge of the seat, only one cheek actually making contact. She urges him to adjust himself before he falls. He ignores her. She returns to her seat, long past worrying about the consequences.
His meal has cooled. It isn't one he particularly cares for, she knows that, so he probably won't eat. She wonders bitterly why she bothers. He smothers his potatoes, tofu cutlets and carrots in heavy dark HP Sauce that he has mistaken for gravy. If it hadn't already been a foregone conclusion, he most certainly won't eat everything now. Only fit for the dogs, she sighs resignedly.
She finishes her meal only minutes after he has joined her at the table. She might as well begin cleanup because she cannot leave the room. Lately his needs have escalated. This being his most mobile and distracted time of the day, he frequently jumps up and stumbles toward the kitchen in search of something. He can never find it, nor can he articulate his wishes. She must guess and not show her frustration. He stumbles back to his seat, fiddles around a bit more with his food then leaves the table for the living room, his meal barely touched. After several falls, he settles on the couch. He grabs the ever-mysterious remote control and makes a few wild stabs at the buttons, peering at it as though he has never seen such a thing. She glances at the clock, sees that it is time for Jeopardy, then rescues him from Remote Control Purgatory. He possessively snatches the gizmo from her and resumes his study of the buttons. She knows she will be back in moments to help him out again.
She returns to the kitchen to scrape away his meal and finish cleanup.
The dogs are happy at least.
* "Bummer and Lazarus", Edward Jump, c. 1861-1865
You capture it all so well, Claire. Dinner, this day at least, pretty much an exercise in futility! I feel bad, both for you and for Michael. I'm assuming that for Michael levodopa is a double-edged sword. Can he move at all without it? And then the dyskinesias from the levodopa make him more likely to fall? That's the way it is with me anyway, though I do not need the levodopa to move AT ALL. But until I have a dose, I can barely type at all. I realize it is different for everyone. And sorry to ask again, but how old is Michael now and how old when diagnosed with the Parkinson's? BTW, I love your last line!
ReplyDeleteHi Bruce.
ReplyDeleteThanks for your comments. Michael is 64, diagnosed at 46 but displayed symptoms for at least two years before that, so twenty years of PD. Michael can move with and without the levodopa except in the morning when he has gone a very long time without. He falls equally frequently with or without, perhaps more with just because he is up and moving about more. Dyskinesia is not his biggest problem. In fact he is hardly troubled with it most days. Rigidity is the biggest issue - rigidity of body and mind - and, most significantly, the dementia.
Thanks for answering. I was diagnosed in 2001 and was 38 so I've lived with it for roughly 12 years. i met Kyle AFTER my diagnosis, so he had NO Idea what he was getting into. I told him about my Parkinson's on our first date and he researches everything to death so I'm sure he researched this, too! If you don't mind me asking, how long was Michael able to work after his diagnosis? I retired in 2010 after nine years of dealing with the disease from both a job as a radio announcer (the disease had done a number on my voice) and a proofreader, a job that required almost 8 hours a day of keyboarding, which had become untenable. I am okay at short spurts of typing and still type my own poetry (in fact I compose most all of them at the typewriter because my handwriting is too bad for even me to read!) My biggest problem is rigidity and a severe pain that no doctor will diagnose but a recent xray showed degenerative arthritis. Pain and dyskinesias are the main reasons for my falls! I assume part of the pain is related to the Parkinson's and the rest osteoarthritis but so far nothing I take helps.
ReplyDeleteMichael left work in 2003 so same as you, nine years after diagnosis. He was still physically quite well but the cognitive decline was severe and he could no longer function in the high level government management job he had. Mind you, he did not really make the decision; that's how unaware he was. It was a very painful time for him. You seem cognitively very, very well. Michael was not able to compose independently even on the computer when he left work because of the cognitive decline.
ReplyDeleteYou were a very young onset, Bruce. So difficult.
Thanks for being so patient with my questions! Was his heart attack something that came after he stopped working? I am, by the way, working my way through your archives. Really enjoyed the one about you cutting Michael's hair.
ReplyDeleteTIA (small stroke) in 2006 and heart attacks in 2007, both well after Michael had finished working in 2003. He stopped playing soccer at the end of the 2006 season and had given up hockey the winter before. I predicted at that time that life would change for him when he could no longer do the things he loved. Within a month, he had a stroke.
ReplyDelete