Monday, December 27, 2010

Comfort and Joy…with Parkinson’s Disease?

Christmas time can be a difficult season for people with Parkinson’s (PWP) and many others as well. Despite the reassuring words of “God Rest You Weary Gentlemen” [and ladies too], it can certainly be fatiguing. The weariness of getting ready for the festivities, late nights and trying to be fully invested in the fun events that take place all consume a great deal of energy. And at the best of times energy is a resource often in short supply for PWP.

Unless you are an extraordinary extrovert who is energized by social interaction, it is very likely that by the end of Christmas day you are exhausted. It was probably worth it, but all the celebratory effort has taken a toll. It may now take a miraculous intervention by God, assuming he occupies a place in your vocabulary, to rest and recharge your batteries. I was reminded of this battery metaphor when listening to the sound of my two-year-old grandson’s new but overworked dump truck, complete with forward, reverse (with back up beeper), dumper, all with the accompaniment of rumbling sounds and flashing lights. The truck had lived up to its heavy-duty title, having been endlessly engaged and enjoyed all Christmas day, but the next day it clearly needed a battery transplant? When you are weary, how do you recharge or replace your batteries?

The ancient Christmas carol continues, “Let nothing you dismay”. Given the definition of “dismay” [to disillusion, upset or alarm], this is even more challenging for PWP. Depression, anxiety, frustration and feeling overwhelmed are often a part of the “normal” daily existence of PWP. Christmas launches a special squadron of these invaders. At Christmas there is usually more intense interaction and ‘careful’ conversation among family members. Then there is the need to perch plates on wobbly knees and at the same time attempt to pierce peas with a shaky fork. And lastly, there is the let down from failing to meet excessive expectations, either your own or those of others. After all the merry-making and game playing I, for one, am worn out and more than a little dismayed. I need a holiday to recover from the holiday.

After climbing this annual pinnacle of parties and falling spent (in more ways than one) at the base camp, how do we PWP manage the consequences of Christmas? How do PWP cope with the Christmas conundrum; the desire to be part of the party and the concurrent longing for retreat and refreshment?

While I may not be able to adequately prepare for this seasonal onslaught, I am discovering that I need to do better than stumble into the aftermath. I need to discover comfort [literally, “with strength”]. I need to experience joy and relief from that dismayed feeling. This year my antidote for the ‘morning after’ was:

1. Engage in an enjoyable and restorative activity that gives you some alone time. Maybe start that new book you were given or go for a long walk in the snow (or in our case, rain). In my case it was a 2-hour motorcycle ride. Despite the weather it was a wonderful oasis.

2. Plan a special time for connecting with just a few family or friends who have easy expectations and do not consume a lot of energy. Play cards or table games. Avoid high-energy requirements. For me, it was going to a Vancouver Canucks hockey game with my two sons. The fact our team won by scoring with 24 seconds left was a bonus!

3. Schedule rest. For me this has been critical. Having a nap need not generate guilt. It is often necessary if you are to meet the demands of the season.

4. Find time to relax with a cup of tea or glass of eggnog and watch a movie that takes your mind off of the frenzy of the festivities and personal anxiety. And while not a fan of most movies, we watched a few segments of the riveting miniseries, “The Pacific”, the WWII drama produced by Tom Hanks and Steven Spielberg.

In spite of all the tumult and difficulty of the post-Christmas season, my prayer and hope for PWP everywhere (and especially anyone who reads this) is that there would be many occasions where comfort, joy and freedom from dismay would prevail, leaving us each with a sense of deep peace.


  1. Thank you Bob for this thoughtful piece. I love the photo of you napping with the pets and baby - what a peaceful scene! I so appreciate the time you have taken in the middle of all the tumult to remind us of the importance of personal and spiritual rest, rejuvenation and peace. Lots of love to you and the family. Kari

  2. Bob, thank you for writing this excellent narrative on the holiday season. I too, have this dump truck along with the bulldozer, excavator and two fire trucks for my three grandsons to play with. Their energy is limitless and tiring to us grandparents. Yet, we so enjoy having grandchildren around during this Christmas season. May your grandson bring you and
    Renee much joy in future days.
    Best wishes,

    Don Pasiuk

  3. Thanks for the encouraging comments. God bless battery manufacturers!

  4. I am just now getting around to reading this. My holiday season was very busy. That would be the reason that I am just now getting around to reading this. ;0) I am 35 and have YOPD. I often look at my age and tell myself that I should be able to do this, or that, etc. Then, I do it and realize that there is a price to be paid. Example: Probably NOT a good idea to repaint your teenage son's bedroom the week before Christmas. Especially when all of the family will be congregating at your house. Because, you know that means that the house has to be in tip top shape, the dinner must be delicious, and the baked goods better be to die for. Oh, then throw in working 40+ hours a week and taking care of my own family into the picture. Yes...I am nuts! Probably certifiable.

    Now, I have "hit the wall" so to speak. All of my efforts over the past week has caught up with me. The physical pain from my muscles being so tight in my neck and shoulders has exacerbated my thoracic outlet syndrome. I am in pain and I feel my heart beating in both of my arms. They ache, burn, and throb almost non stop. In addition to that, my carpal tunnel has reared it's ugly head. No doubt, from the hours that I spent delicately cutting in the edge of the wall with paint where the wall met the ceiling. All the while, using extra force to try and stop the tremor in my right hand. Don't feel bad, this is just life for me these days. If you were to see me on the street, you would have no idea of the battle that I am fighting. Even the people closest to me don't really know how bad it is for me. Yet, for some reason, it feels safe to say it here. I guess it's probably because you know what it's like to live with this disease.

    I am a Nanny for a living and take care of a 16 month old little boy five days a week. Today was an 11 hour day for me. Today, I laid down with him at nap time and we slept for two hours! I was actually quite embarassed to tell his mom that, but I did. See, I only slept for three hours last night because of a tummy issue and the usual physical pain. Even still, I felt guilty for taking a nap. Then, I read your blog. I don't need to feel guilty. Yes, I may be a 35 year old woman, but I do have Parkinson's Disease. No, it doesn't define me. I keep trying to prove that over and over again. I do need to remember to take care of myself. Thanks for the reminder. I hope that your Christmas was enjoyable!

  5. Dear LH;
    I wish I were able to help more than just write a line or two in hopes of encouraging you to keep on fighting. This time of year can be a burden and I sincerely pray that the load would be lifted from your shoulders, if even temporarily, so that you could know some comfort and joy. Have courage and hope. You are not alone.