Aging at Warp Speed

This was a journal entry of mine four years ago, about 2 years after the initial diagnosis:

For me this disease in our lives is like watching someone age before my eyes. He was a big strong handsome guy – think Tom Selleck (I always did). He could lift anything and never needed to ask for help. He told me once he’d never felt physically vulnerable, which was the opposite of me since I’m 5’2″ and grew up in New York City.  I always felt vulnerable.

He’s got a  hunched over posture now. One of the things I noticed even before he was diagnosed was the change in his smile. I didn’t know then that it was increasing rigidity of muscles in his face. He has trouble getting up from a seated position, particularly from soft chairs or couches. He has far less energy and stamina.   His speech is slurred and his voice is quieted. We no longer play golf, or go skiing.

There isn’t a day that I can forget about his PD. Although the symptoms aren’t that bad yet, there’s always something new to notice.  A crash signaling a fall from halfway up the stairs. A glass slipping out of his hand and smashing on the kitchen floor, again. The help needed to button a shirt, or get on a winter glove. The inability to fold laundry anymore.

Each symptom I noticed threw me into anxiety about what would come next. If he couldn’t do this now, what would become impossible next month or next year.

Three months ago something changed. I decided I had a choice. If I kept on fearing what would happen in the future and making myself miserable in the present I was suffering twice. Instead, I started asking myself a simple question.

“Can I manage what is going on right now? Is today okay?”

I made myself notice all the good in the day. I started seeing that though he was had trouble cutting up things in the kitchen (he always enjoyed cooking), he can still make wonderful meals.    Although we can’t go skiing, we can take walks in the snow with hiking poles. Although we can’t hike up big mountains, we can enjoy the lower trails. And when he struggles to get up from the couch, sometimes I joke and push him back down and we both laugh.

I know things will change from day to day and month to month. I don’t know what the future will bring. Right now, I’m focused on now.

NOTE:  As I read this now, although 4 years have gone by, it’s about 20 years of aging.  He has more daily challenges now than my mother had at 95 years old.  We can barely go an hour, never mind a day without the disease saying loudly “I’m here!!!” Without a new symptom cropping up, without struggling to figure out how to mitigate the impact of the disease.  I try to stay in the day, and in the hour.  I try to stay in the now.  That alone is hard work.

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