Life Lessons During the Pandemic with Parkinson's Disease
It has been the umpteenth day since quarantine began. I know for many of you it feels like another lifetime when we could go out and do what we wanted when we wanted to and not be afraid of becoming critically ill or seeing our loved ones succumb to an unknown disease. Many of us are not certain what the future holds a week from now much less 3 months from now.
The truth is that my life has not changed very much during this unprecedented event because in reality, I, along with the millions of people who with chronic illness, are already experts at staying home for long periods of time, feeling isolated and completely shut off from the rest of the world.
One fear: Raising my kids during these challenging times
I worried about how I would raise my kids, including feeding, grooming, and even teaching them during my journey with Parkinson's.
My daughter stopped asking me about her math problems when she was in junior high because she quickly learned that without my dopamine, I could barely do simple addition in my head much less algebraic equations. She also learned to make sure my “thinking cap” was not only ‘on’ but fully activated before we could have subject matter discussions to prevent embarrassing episodes at school.
At the beginning of my illness, I was so mentally foggy most days that nearly two years had passed before I could think and see things clear once more. It was during this time of my life, that I had a tendency to say and do the darnedest things.
If asked the question, "What were the names of the 3 musketeers?", I would confidently say, “Leonardo, Raphael, Michelangelo (and Donatello)." My daughter would then proudly repeat that response verbatim to her first grade teacher that same day. Trying hard to hold in her laughter, her teacher finally asked where she learned this information, and my child said, "My mommy!” very matter of factly.
Little did I know that on the fly answers of a stupor's mind would stir up commotion and laughter throughout the teachers’ lounge regularly. Ever since then, the joke at home has been, "All right, let’s hear what Mama has to say on the subject,” anytime my daughter asks me a question.
Another fear: Economic devestation
One of the biggest fears we face today, besides losing a loved one, is that of economic devastation. Let me tell you, I understand and sympathize with that apprehension. What if, due to illness, we had significant loss of wages and medical expenses? Or what if we were considered non-essential employees and were either terminated or had our wages reduced?
Since my illness began, we lost half of our income due to my inability to exercise my profession. We also saw an exponential rise in expenses due to my illness. We felt the impact and wondered what next? It felt similar to the questions many people are asking today. Do not panic! You got this. Although I admit, it was unsettling and frightening not knowing if we could manage with what we had. Eventually, though, I found a new way of making up some of the lost income and so will you.
Things I have learned during these challenging times
- Do not be afraid to start over and pursue other talents and/or jobs. You never know where these might lead. I genuinely believe everyone has another dream inside – this pandemic might be the opportunity to lead you into something you been putting off. Having new onset of Parkinson's may provide the catalyst needed to reinvent yourself just as living in midst of epidemic may unleash new dreams. (Who knew I would become a writer?!)
- Do not live life being afraid. Hiding under a rock or burying our heads in the sand will not solve our anxiety. We need to take charge and make contingency plans. Fortunately, with many of us at home, there is lots of time to do this now. My husband and I started talking again about our wills and how our needs and plans have changed a decade into my illness. This may be the time to start contacting social workers or financial planners to help with "just in case" events. When making changes or drafting a will, the more explicit you are the better. Put everything down in a binder so is easy to find.
- Ensure there is open communication with your care partner about what can be done to alleviate stress. Perhaps, consider a part-time job from home. Look at private organizations as well as government programs for assistance. Do not forget about medication programs through your insurance as well as through individual pharmaceutical companies. Churches are also a good source of support - financial, emotional, and spiritual.
My rules of survival
Although, we have been forced to stay in and sometimes feel awful by ourselves at home with fever, chills, pink eye, loss of smell, chest pains, stomach problems, and breathing problems, I truly sympathize and here to tell you that if you follow these simple rules you too can survive and come out stronger. For you see, this has been my life on and off for years.
- Have your doctor on speed dial.
- Have a complete list of medications that you take with name, dose, and times they should be taken. Be specific.
- Listen to your body. Sleep and rest when needed. Also, our bodies are particularly good at telling us what they lack, so pay attention.
- Stay mentally active: This can be done through reading, downloading free online games, or watching TV game shows, which you can play with other people in the house or through a media forum. My favorite game show is America Says.
- Stay physically active: You can dance, sing, or play an instrument alone or with others virtually.
- If something seems wrong, especially if you have a high fever, chest pain, breathing problems, increased sleepiness, or mental confusion call your doctor ASAP. Do not wait.
- Have all your medications already in a bag to take to hospital, as well as a note from your doctor saying you can take your medications if able to on your schedule. You may also want to think about having a sitter with you to make sure your chronic illness problems and treatments don’t fall by the wayside. Leave all valuable items at home. Even when you feel alone – remember God is there by your side holding your hand. I have spent several weeks in isolation when receiving iodine therapy. I didn't have contact with anyone, except through a phone while meals were delivered through a slot on the door. I also received a visit from my doctor in a hazmat suit.
- Finally, and the most important thing I have learned is to pray constantly through the good and the bad.
One thing that I believe is that life will never be the same again. Nevertheless, I will cherish this time for the lessons it has thought and the people who have touched my life. So, no matter what the future brings, I know that together we can weather any storm. We must learn to bend but never allow ourselves to fully break.
Do you live with any sleep disorders (eg. insomnia, RLS, sleep apnea) in addition to PD?