I Hate Parkinson's
There, I have said it. I hate it, I hate it, I hate it. No, this isn’t a pity party. It is reality.
I try to write positively about Parkinson’s disease (PD), but sometimes the negatives must be told. What did I do to deserve living with this chronic disease?
Dealing with the symptoms
This morning was like playing "whack a mole." My foot started shaking. Got it to stop ... and my hand started to shake. Back and forth. Foot and hand. Makes it tough to get things done until the morning meds kick in.
Then there is sleep, or lack thereof. A good night is one where I don’t go downstairs to hang out on the sofa reading until it is time to get up. Five hours of sleep is good. Six hours - bring out the hallelujah choir!
I don’t think I have missed a sunrise in years. The good thing is that I usually don’t feel fatigued during the day. The bad thing is that at some point in the evening I feel like I have fallen off a cliff.
Besides, your brain needs the rest to repair itself. It is a vicious cycle. Little sleep ... brain doesn't recover ... symptoms increase ... and you just feel tired all of the time.
Managing multiple medications
All of those meds to take. If you miss a dose the off-times will definitely remind you. More than once I have had to borrow a levodopa/carbidopa pill from a PD friend because I forgot mine.
The other problem is that there is a delicate balance between taking the right amount and having dyskinesias because your brain thinks you are getting too much dopamine. The amount needed can vary from day to day. Ugh.
For me, dyskinesia causes a slight swaying of my head and I find that I am making myself seasick while my feet are planted firmly on the ground.
The impact of every day life
Don't you hate it when people look at you funny because your hand is shaking our your head is bobbing? When you don't want to hold your newborn grandchild because you afraid you will drop her?
Going to a restaurant and you can't drink a glass of water without splashing it all over you? Your foot drags and you trip over ... nothing. A crack in a sidewalk jumped up to trip you? Of course it wasn't your fault that it sent you sprawling.
Yeah, yeah, Parkinson's is not fun. But there are some good things that come out of it. Like what? That's not possible, you say.
Gaining a community
Mr. Twitchy and I have been binge watching an old tv show called Community. A group of students at a lowly community college form a study group for their Spanish class.
This disparate group, who literally have nothing in common, form a bond with the others in the group in spite of themselves. Each episode puts the group in some absurd situation, but they all end up looking out for each other, making sure they are ok.
I have found that same thing happens in our Parkinson's exercise classes and support groups. We have made our own communities with other people with Parkinson's, many of whom we may never have had a chance to meet otherwise.
The support of friends
Some of my closest friends are people with PD that I have gotten to know over the years. We look out for each other and know when someone is having a bad day.
With the pandemic, many of us really feel the negative effects of the isolation that was forced upon us. We may connect on Zoom, which helps, but it is not the same as being together.
Zoom does, however, bring other opportunities. Through my Sunday Mornings with Twitchy Woman webinars, I have met wonderful women from around the world.
When the opportunity arises and I can get together with someone I have met through the internet, we feel like old friends.
This happened over and over again at the last World Parkinson Congress in Kyoto. I ran into many other bloggers and many of you who follow this blog. We hugged, we took pictures with each other and made plans to see each other again.
The benefits of technology
And there are other opportunities because of technology. Geography doesn't matter. You can join a PD exercise class, support group or lecture anywhere, at a time that works for you. If you happen to travel to the city where the classes are being held, you can always attend in person.
I have gone to Rock Steady Boxing classes in Chicago when I am there visiting my daughter. I always receive a warm welcome from the other boxers and have a lot of fun.
There are silver linings
The bottom line is that while Parkinson's is not something any one of us likes, there are some silver linings.
I look forward to getting the chance to meet all of you sometime, either in person or on the internet.
Has it been difficult for you or a loved one to maintain hobbies?