Parkinson’s Disease and the Holidays

Intro:

The holidays are an emotional time. Will Uncle Frank get drunk and talk for hours about how great Trump is? Will Aunt Gertrude criticize everyone’s cooking? Will cousin Cindy try to control everything? Is someone actually talking notes on who did the most dishes? Will your older brother punch another family member in the face, instantly bringing back all your childhood trauma? (That last question was oddly specific!)

Now throw Parkinson’s disease into the mix. People with Parkinson’s disease (PWP) often suffer from depression, anxiety and other mental health conditions. This year at Thanksgiving, while saying what I was grateful for,  I suddenly started to cry. (Sorry about that.) Please remember to be kind to yourself and others always. 

Loved ones who haven't seen their PWP in a while may be surprised. You (or a loved one) may want to warn others in advance. One holiday, after COVID, as I walked from the car to their front door, I saw my parents watching my progress from the window. When we got inside, my parents both burst into tears. They were clearly not prepared for how far my disease had progressed. I wish I had warned them in advance. 

If you are the person with Parkinson’s disease:

Tell your hosts in advance what you can and can't do and what you do and don't need. Help when you can, how you can. 

Get ready to field questions about recent Parkinson’s disease-related news shows and articles. Be prepared for several stories about Rock Steady Boxing and Deep Brain Stimulation. Take a deep breath. People love you and they are trying to connect with you. Your disease is painful and traumatic for them as well. Many men have been raised to go from problem to solution in an attempt to avoid dealing with emotions (I know I was). So be kind to that uncle who brings newspaper articles. It's his love language. At the same time, feel free to say,  “I'd like to have a holiday where we don't talk about Parkinson’s disease.” 

Children:

I can guarantee you that the children in your family are smart, observant, empathetic people. Nothing gets past them. Have a kid-friendly explanation of what Parkinson’s disease is, and use it. Children have fantastic BS detectors. Don't lie to them.

If your loved one is the PWP: 

In many cases, at one point during the day your loved one may look completely healthy, and then three hours later, the symptoms of Parkinson’s disease are evident. This type of fluctuation (when the medication does or doesn't work) happens often to people with Parkinson’s disease. In general, it isn't something to be concerned about. Regardless of what medication they are on, Parkinson’s disease is still degenerative and incurable. They may find a new medication that better controls their symptoms but in general, all of us with Parkinson’s disease are going to get worse. I can’t tell you how to come to terms with that, but if you have any ideas, please let me know.

It isn't necessary to rush in and save PWP from every situation, but it's okay to be concerned about your property. I haven’t fallen and destroyed anyone’s priceless family heirlooms, yet, but I’ve chipped more than a few dishes! 

It's great to stay up-to-date concerning recent developments on Parkinson’s disease. This shows that you really care and that you're trying to help. I suggest that you email the articles to your loved one after the holidays. 

Sometimes, PWP rise to the occasion. Be open minded, they just might take part in the annual family football match, or swing dance to a few songs at your wedding! 

I recommend you don't ask your PWP if they're going to be okay. I will save you some frustration; 90% of the time, if the PWP is being honest, the answer is no. They may be happy and fulfilled people with a lot of supportive friends and family. (I know that I am.) They are still probably not going to be okay. Please keep in mind that It’s okay to not be okay. 

As my wife often tells me, If you go into a situation thinking, “We're all just people and we're all doing our best,” the odds of successful holiday visits increase dramatically! She is a very smart woman!

As always, I look forward to a world without Parkinson’s disease. It’s on my Christmas list, I’ve been pretty good, and I remain hopeful.

I have no holiday advice on what to do about the vegans. You are on your own to solve that challenge! 

 

 

I am John Andrejack.

This is a message of Hope.