a woman sits on the sofa with a long holiday list

All I Want for Christmas

Two years after being diagnosed with Parkinson’s disease, my children were disappointed that I could not tell them what I wanted for Christmas. There truly was nothing I wanted or needed except to be surrounded by my family and friends.

Parkinson's wish list

However, after the past 2 years of being diagnosed, I did come up with a list as I struggled with daily issues and Parkinson's symptoms. Although not all of them are possible to fulfill, I wish Santa could bring me the following:

  • A full night of restful sleep
  • A morning with no stiffness and pain
  • A week or 2 with no diarrhea or constipation
  • The ability to get dressed and get through personal routines without taking so much time
  • The gift of getting into public buildings without assistance
  • The ability to maneuver a handicapped restroom easily
  • Exercise without severe arthritic pain
  • Less help getting in the car
  • Not having to rely on others so heavily to prepare meals
  • Not waiting months to see my neurologist or other specialists
  • Not experimenting with medication to see what may improve symptoms

It then occurred to me that although Santa could not deliver, there were still things I could do for myself to at least possibly improve the situation.

Taking action

When it comes to sleep, I go to bed at the same time every night. I do not have electronics in my room and I listen to calming classical music while meditating. For my stiffness and pain, gentle bed stretches help ease my sore muscles before I attempt to move too much.

Diarrhea and constipation are more of a challenge. However, I am currently following a Mediterranean diet and time the medications that give me problems with my primary care physician's help.

Planning my daily routines and trying to give myself the patience to take it slowly is also helping. My caregivers are very accommodating.

Maneuvering restrooms takes focus and planning. I also keep any equipment that I need handy. I can get into public buildings more easily by making myself visible at the entrance, even if that means I have to wave a flag.

I find exercises that will keep me as active as my condition will presently allow. I practice car transfers frequently even if I am not going anywhere. When it comes to preparing meals, I take on the role of sous chef - I can still chop and stir.

To avoid waiting months to see my doctors, I use MyChart and telemedicine often. I also ask for expedited appointments as needed - this does work at times. I am own best advocate and ask questions about any changes to my medication.

I focus on what I can do

What I have learned is not to dwell on what I struggle with and expect a magic wand to be waved. Instead, I determine what I can do to make changes that will help me do better. Focusing on what I cannot do is not productive.

I wish you all a wonderful holiday and Santa is there in spirit. I do still believe!

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