Thinking About My Future with Parkinson's

For many people, Christmas and Hanukah bring presents to those we love and value. Likewise, New Year’s Eve brings resolutions for what we want to be. That said, the end of the first week of January shows the reality of what took hold and will carry us throughout the year.

Hope for a cure

With Parkinson’s, there seems to be an end of December hope that a new year will bring a cure, but once again, that wish wasn’t under our tree this year. I did, however, find a Roberto Clemente card and a framed picture of Sparky and myself photoshopped into the Stepbrothers movie poster, but no pause on my tremors.

My wife, likewise, didn’t find an end to her worries for my future, but she did find some earrings. It’s not much of a consolation prize, but they do look good and are appreciated.

As for my dog Sparky, he’ll need to keep watching over me as I sleep since my REM actions, to include kicking, still occur. Santa wasn’t able to fulfill that wish either. Fortunately, Sparky got loads of squeaky toys to play with. They keep us both active since "Fetch" also includes me getting up and getting his toys out from under the radiator, furniture, and other obscure places. Thus, the bearded guy from the North Pole did come through.

Gifts for others

Mostly, Christmas for us seems to be getting Christmas presents for my nephew Dylan. He’s 9 and full of Christmas spirit. I’m sure that someday, he’ll enjoy doing for others like I enjoy hooking him up with collector’s cards now.

For his birthday, it was Pokemon. For Christmas, I did a 3 for 1 card swap to get him a limited-edition Bryce Harper baseball card. Being from eastern Pennsylvania, that’s his favorite player. I’m lucky to have a godson in my life that appreciates card collecting and chicken nuggets like I do. He appreciates all of that.

My aunt's chocolate chip cookies

As a young kid and even as a middle-aged adult, my aunt made cookies with a passion identical to elves who live in trees that double as bakeries. She would make over 100 dozen cookies in some holiday seasons. She would also make them for other holidays and events. If you did anything nice for her, even something small or one off, you might find chocolate chips or cutout cookies headed to you. Over the years, she made brownies and other baked goods, too. They were good.

She also sent packages of cookies and food to me in my early days in the military. Some roommates hated the temptation of snack food, and other times, people would inherit food I couldn't eat quickly enough. While some items might go to other places, the cookies would never be subject to gifts. Because of this, my aunt even made a friend of mine his own cookies after he talked to her on the phone one time. He definitely appreciated it!

For me, I would try to make the cookies last 3 calendar days. It was never easy since they were that good. Most times, they barely made it until the next morning. Let's say I could have piles of cookies, and I was never cookied out!

This year there were no cookies

My aunt is currently living with dementia. Next week, she begins adult day care as part of a process that will lead her to a new home where she can be cared for 24/7. It didn't come quickly, and it hasn't been easy to make happen.

In the middle of January, she will visit a neurologist for the first time. When it’s over, we may have a similar diagnosis that I also share with my great grandfather. In his day, it was called paralysis agitans. At this point, her condition has no name, but all of the "misconnections in her wiring" are getting worse. (Author's note: It ended up being Alzheimer's).

This situation is sad to watch. It’s extremely taxing for those close to her to help with. Nobody enjoys seeing someone they love suffer with something they can’t help with. Frankly, people don't like to see their loved ones get worse.

It’s also painful for my aunt to express what she understands of what’s going on. Knowing what I know about the potential for Parkinson's dementia, I can relate to much of it. I empathize with all of it. Those around her do, too.

Thinking about the future

For me, it’s a parallel much worse than when my sister and I got a coal for Christmas one year. That was a warning to behave. After all, we did get toys with our shape up letter. Now, though, my mind got a different warning of what might and will come.

Inevitably, I will lose my independence and need more medical care. To what level, I have no idea. In the meantime, I just felt all my symptoms fully and saw the future. It wasn’t a happy thought.

Not getting her cookies anymore sucks as well, but it’s not nearly as bad as seeing her in this place and wondering what's in store for her.