Thursday, December 5, 2024

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.






Thursday, January 4, 2024

The Four Things Our Mother Taught Us

 Jean Andrejack. May 20, 1936 – December 14, 2023

Author’s Note: 

The title of this blog is: “A Day In My Life With Parkinson’s Disease.” As you read the post below you may think, “what the hell does this have to do with Parkinson’s disease?” First and foremost, people with Parkinson’s disease, have friends and family members who die. Unlike some people without Parkinson’s disease, I have had challenges maintaining relationship with my parents as the disease progressed. Neither my mother nor my father drives and I can no longer drive 90 minutes to their home and return the same day. I have developed chronic fatigue, and this made maintaining a relationship with my parents, especially my mom as she was dying, more challenging. I could not provide the assistance that my brothers and sister so willingly offered to my parents. If you are wondering, “do you feel badly about this?” The answer is yes.

When you have Parkinson's disease, you have a good days and bad days, and the day of my mother’s funeral was a bad day. I was not certain that I would be able to stand at the podium for long enough to deliver the eulogy and yet somehow, I managed to do it.

 Jean Andrejack. May 20, 1936 – December 14, 2023 

One of my mother’s final wishes was to die in her own home. After 87 good years, my mother passed at home peacefully in her sleep. She lived a very good life. She had five siblings, many nieces and nephews, four children and one grandson. My father and mother were the greatest couple I ever knew, and they both hit the jackpot when they found each other. She also had her friends and her faith. When I was asked to do the eulogy, all I could think about were the four things that my mother taught us. 

The Eulogy  

On behalf of myself and my family, I thank you for coming here today to help us celebrate my mother’s life. I have had some time to reflect about all the things my mother taught us, and I came up with four categories.  

1) There Is Always Room For One More (or 2, or 3, or 4). 

A.  My parents loved Christmas. One year, my mother gave my sister Jean the ugliest sweater that I have ever seen. This started an unusual holiday tradition. 

Christmas 2012 With Ocean
Christmas 2012 With Ocean

B. On Christmas Eve, everyone was welcome. There were friends, girlfriends, ex-girlfriends who became friends, boyfriends, and friends of friends in our home. After midnight mass and more than a few margaritas, we always had “the sweater ceremony.” My brother Rich would appear from the basement surrounded by a cloud of suspicious smoke. Then one of us, usually my brother Paul, would go into the other room and return with a box. Paul would open the box, hold up the ugly sweater my mom gave Jean up and say, “ladies and gentlemen, I give you the sweater!” The house would fill with laughter. People who never saw it before, would say things like, “it’s worse than I ever could’ve imagined” or “Oh my God! I thought they were exaggerating!” Eventually the laughter would die down, and my mother would say, “I didn’t think it was that bad.” Then, the laughter would start all over again. This story illustrates two things about my mom, first she had a good sense of humor and didn’t mind being the butt of the joke (she played the straight man to my dad for almost 60 years), but more importantly, that she always made room for one more in our home. 

C. She must have learned this from her parents because my Aunt Francie and Uncle Don are the same exact way. 

D. The Little Cabin On Chapman’s Lake. In the summer, my Aunt Francie, Uncle Don, my cousins, Susie, Bobby, and Donald and my sister Jean, brother Rich and I (my brother, Paul was not born yet) would all stay in a tiny cabin on Chapman’s Lake in Pennsylvania. In addition, other friends and family members would often stay for an evening or a weekend. 

When I saw the cabin as an adult, I wondered, “how did we manage to fit so many cousins and friends into such a small space and still always have room for one more?!” 

 

My 8th Graduation

2) Importance Of Education 

A. Education was very important to my mother. If you wanted to come and stay with us in the summer and swim in our pool, it was no problem. You just had to agree to work on math or English for an hour after lunch using one of the workbooks that my mother purchased for us. 

B. Learn Your Own Way—How She Taught Me To Study. I had trouble concentrating, so she taught me that to learn something, you had to read it, write it and say it out loud. I would walk around our dining room table, muttering questions and answers to myself until I had everything memorized. Sometimes, a teacher would call home and tell my mother that I appeared to be talking to myself while taking a test. My mother would reply, “so, how are his grades?” I study the same way to this day.

3) Have An Attitude of Gratitude 

A. My mother taught us to be grateful for every little thing that someone does for you and to tell everyone about it. 

B. If someone tries to help but doesn’t succeed, be grateful for the effort 

C. Gratitude makes it easy to forgive someone’s faults and more importantly, it makes it easy for others to forgive yours. 

D. Think of how brilliant this is. How could you possibly stay angry at my mom when she was always saying such nice things about you? 

E. She told us:

  • Every time the church delivered a pizza. (One Friday a month.) 
  • Each time the Hollers delivered a pie or a tray of lasagna. They are truly a remarkable family, and my parents are lucky to have them as friends. 
  • Towards the end she was grateful to my cousin Susie for bringing Uncle Don and Aunt Francie to see her one last time. She said, “it was a wonderful visit.”

Aliases

My Mom had many aliases such as Mom, Jane, Jean, Aunt Jeannie and Granny. The one she liked best, however, was the one my dad called her for almost 60 years, “My Bride.”  

4) The Most Important Lesson She Taught Us Was How To Love. 

When I think of famous couples, I think of Bogart and Bacall, Johnny and June Cash, and most recently, Oprah and Stedman. I can assure you that none of these famous couples could compare to my mom and dad. Of all the things my parents did well, loving each other was what they did best. 

As the story goes, my father met my mother at my Aunt Francie and Uncle Don’s wedding. My mother told me that my father kept cutting in even though she was dancing with a rather large gentleman who was getting very angry. She said, “your dad didn't care, he kept cutting in.” 

She told me that on one of their dates, my father handed her a single rose, and when he let go of the rose, the engagement ring slid down the stem into her hand. (Looking At Dad.) Nice move dad! 

Here was my mom’s simple recipe for being a good couple: 

A. Accept each other’s quirks and faults 

B. Never go to bed angry 

They were tough act to follow, they didn’t make it easy, no one could live up to that.  

Looking Up Talking To Mom: “So mom, how did I do?” (Pause.) “I know, I know it was a little bit long, but I am grateful for all you taught us, and I will tell everyone about it.” (Looking At The Audience.) She said, “you just did.” She is doing this (Demonstrate Counting On Your Fingers). That is what she did when my father told the same story over and over again! “Mom, there will always be room for one more in our home and I love you.” (Looking Up) “Look mom, I gotta go.” (Looking At The Audience.) She said, “come again when you can stay a while.” 

 END 

Thank you for reading.