When Someone You Love Has Parkinson’s Disease

My grandfather had Parkinson’s Disease for as long as I can remember. As I got older it got worse for him, I was still young and I remember laughing along with my cousins when he tried to sip his coffee. He always used a saucer and I can remember the rattle of cup on saucer as he tried to drink his drink and spilling it all over. We used to think he was doing it on purpose to make us kids laugh; as we got older and understood what he was dealing with the laughter stopped and the compassion started.

I used to love the smell of his pipe. What used to take a minute or two of his time to pack and light his pipe became a slow labor of love for him, trying to get the fragrant tobacco into the constantly moving target of the pipe bowl.

I witnessed the progressive degeneration in his motor function until he passed away at age 86.

All this to say, it was a shock when I learned my father was diagnosed with PD two years ago at the age of 79. PD is not supposed to be hereditary and I know my dad had at times worried he may get it and took solace in the research that said it wasn’t supposed to be passed along.

It started with a tremor in his right hand. I am sure when it started my dad must have freaked out a little but wrote it off as a sign of old age. 2 weeks later it turned into full blown shakes. A trip to the neurologist was inconclusive because once again research had suggested that PD was not supposed to progress that quickly. The first thought was that dad may have had some form of stroke or some other neurological disorder, but after more tests they concluded it was PD, and he started a course of meds, joined a support group and started to learn what he could about this disease in order to come to terms with it. The doctor said he was lucky to get it at his age so he wouldn’t have to suffer as long with it as opposed to those who live with an early onset diagnosis.

Mom has not handled the diagnosis well. She is scared, but like any good Irish Catholic, she internalizes it and doesn’t want to ‘be a bother’ to anyone about it. Same with dad. Getting info out of them is not easy. It’s one giant Parkinson’s puzzle piece to figure out how I can help and support the two people who rolled the dice 47 years ago and adopted me as an infant (They may say they were the lucky ones but I’m the one who won the jackpot with them. I was adopted from The New York Foundling, please support this organization).

How do you help the ones who have helped you the most, especially when they act as if they don’t want the help because they seem to be frozen with fear?

How do you help the man who taught you how to tie your shoes and now he has trouble tying his own shoes?

How do you help the man who was a track star in high school and spent so many years running who now stops on his way across the room to greet you because sometimes his gait gets reduced to a slow shuffle?

And how do you help the man who was an NYPD Homicide Detective and spent years in Washington DC alphabet agencies that may or may not exist (that will not be named so I don’t have to kill you) who never forgot a name or face when he starts to experience short term memory loss?

As their son, and the only child, I want to help and take care of my parents, especially because they have done so much for me (and for many years I neither recognized nor showed gratitude for it). I am making living amends to them for my years of ignorance. Having children of my own has given me a much better appreciation for my parents.

I have tried to learn as much as I can about PD and how I can help my parents as they work through the progressive stages of my father’s diagnosis. Thank goodness for his local support group and the Michael J. Fox Foundation for Parkinson’s Research and the many other resources I have discovered online.

I am grateful for the loving support of my wife and the research she has done to help me be able to help my parents have a plan for my father’s needs as he ages with PD.

Thanks for reading. If you have PD or are a caregiver to someone with PD, I would appreciate hearing about your experience with this disease.

Dave

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