I was surprised to realize it has been more than 18 months since my last Parkinson’s update. Where did the time go? It wasn’t that I couldn’t have written a blog post. With the pandemic keeping us at home for more than a year, I can’t claim that I didn’t have the time. But life was no longer the same and time wasn’t the same either. I tried to write. I have more than a dozen half written drafts. But somehow I couldn’t focus long enough to finish one. What I did write seemed to take hours. My mind wandered. I wondered if my lack of focus was a Parkinson’s issue. But no, I think it was more a pandemic issue. The result of living for an extended time in unnatural circumstances without knowing when or even if, life will return to normal.
A year without a doctor visit meant there were no changes made to my medications which no longer work as well as they once did. I take my first dose as soon as I get out of bed in the morning. If I don’t take them early enough, my leg and foot will cramp and twist. It takes a good half hour for the medication to kick in. I will then have at least a couple of tremor free hours. If I get busy with some kind of physical activity, I won’t notice the medication wearing off which can be both good and bad. It’s good because I can continue to do whatever I am doing without interruption. But that also means I can easily forget to take my next dose. Even when I do take the pills on time, the previous dose often wears off before the required 4 hour interval has elapsed.
Failing medications make it more difficult to do many things. A tremoring foot has a difficult time keeping a constant pressure on the gas pedal to maintain a nice, steady speed. Because it is difficult to time my driving so that my medication doesn’t fade while I’m behind the wheel, I no longer drive myself more than a few miles from my home.
A tremoring hand has a hard time typing on a computer keyboard. I’ve been working on using my laptop’s built-in speech recognition software but that is far from being frustration-free. Things like drawing or painting don’t have many alternate solutions. They have to be done during my medications “on time.”
Cashing a check at the bank or using a credit card to pay for purchases, will sometimes cause others to look at me and my tremoring hand with suspicion. I see the judgmental questions in their eyes. “What is she so nervous about?” “Is the credit card stolen?” “How much alcohol did she drink before coming into the store?” Many people identify tremors as being caused by self-inflicted abuse – perhaps, drug addiction or alcoholism – rather than being a symptom of a naturally occurring condition.
I’m allowed four doses of medication a day which covers 16 hours. That’s a logical prescription. Parkinson’s tremors do not occur during sleep so no medication is needed at night. But that logic assumes that I will sleep for 8 hours straight and that is not always the case. Once asleep, I will usually stay asleep for only 4 or 5 hours. I wake up stiff and find it difficult to roll over in bed or get up if I need to. I may fall back to sleep or I might not. A short night is often compensated with a nap in the afternoon but because I can’t take the medication out of a nap, it leaves me short of medicated hours at the end of the day. If I have something special to do, I will take an extra (doctor approved) dose which can give me more “on” hours or at least make the in between dose “off” time shorter and less noticeable. A post-Covid discussion with my doctor about medication will be tops on my agenda this year.
Regardless of how many hours I sleep at night, a condition called Narcolepsy may cause me to fall asleep unexpectedly throughout the day. Reading, watching television or riding in a car can all trigger a nap. Sleep and especially dreaming and “dreaming while awake” become strange phenomenon that would require another blog post to fully explain.
But now it is May 2021 and finally, both my husband and I are now fully vaccinated. We’ve still not ventured out much. After a year, our home routine has become… routine. It feels as comfortable as an old shoe. Thinking about going out feels somewhat scary and not just because we know Covid-19 is still running rampant. Other irrational fears creep into my head. What if we have a car accident? What if we lose the car keys? What if we are attacked by wild animals, fall off a cliff or are kidnapped by aliens? So many possible disasters could be waiting. Why risk going out when life inside is so much more secure? I wonder if those thoughts are a Parkinson issue too or simply the result of a year in near isolation. How does one know the difference?
Despite my issues with Parkinson’s, I resist the idea of “can’t do.” That attitude is self-defeating. I would rather try to do something and if I fail, I fail. The only way to know your limits is to keep trying.
I put on my shoes and force myself out the door.
We arranged to meet fully vaccinated friends at a favorite hang-out. After a year of Covid, John and I both seem to have almost forgotten how to socialize. With masks and social distancing still required and necessary, social situations still feel somewhat awkward. Do we dare eat inside a restaurant? Do we hug friends we’ve been apart from for so many months?
We walked in and our eyes meet those familiar eyes. We approached and greeted each other with a big “hello” and said how wonderful it was to see each other again, but all four of us remained 6 feet apart. Masks hid the wide smiles we were wearing on our faces. Nothing could hide the smiles in our eyes. Finally, our long time friend reached across the divide and wrapped me in a hug. The barrier of hesitation evaporated like smoke drawn into an exhaust fan. We took turns hugging each other. There it was. That familiar feeling. We found our “normal.”
Vaccination has allowed me to do some physical therapy at our local hospital. My family is once again contemplating a bit of travel. As friends and family also become vaccinated we feel safer holding small gatherings.
Parkinson’s has taught me that nothing is more important than our health. Covid has given me a new a appreciation for modern medicine. I have little patience or respect for those who refuse to be vaccinated while waving their flag and claiming to be expressing their “American freedom.” Patriotism is not about personal rights. Being patriotic means doing what is right for community and country even if it might not be right for you. Modern medicine has given us a vaccine to fight Covid-19 and every patriotic American should be in line to take the shot. But that’s a whole other argument.
Covid-19 was the end for half a million of us. It was and remains a hard time for many. It was a learning experience for all. We may not know for a long time, the full extent of how a little Coronavirus changed our world. I feel like I/we could have – should have gotten more accomplished but somehow Covid was so disruptive that it took away our ability to really focus. But the sun came up this morning, the birds are singing, and flowers are blooming. Spring has sprung! It’s a new year filled with new hope and a second chance.
Home at the WhackyShack 