Today I drove my friend to cataract surgery. We had a good chuckle as we are getting to that stage of our lives. We are not that old, however, in times past, we used to drive together to dance classes, now we take each other to doctor’s appointments. Even funnier was when she was finished, she was sitting in recovery with an IV and since my fine motor skills are failing, I was fumbling trying to find her sunglasses in her purse.
These chuckles I had today continue the path and major turning point for me that was started last week with my physical therapist (PT). During the PT session, I had the first true “belly laugh” since my soul mate of over 33 years, Steve, took his own life in March of 2015.
I was laying on the floor trying to roll over to the right at the PT’s request and I couldn’t figure out which way was to the right. Then the PT, who is next to me on my right side, starts whistling, and in a sing-song voice is saying; “I’m over here”. I thought this was the funniest thing; the absurdity of the simplest task he was asking me to do, something most of us can do with ease and without any thought process and it was confounding me. I was laughing so hard at myself, I had tears in my eyes and I started to drool which made me laugh even harder as that is another symptom of a progressive disease I was diagnosed with in November of 2015; Parkinson’s Disease (PD).
I say “diagnosed with PD” as 2 neurologists have told me that. There is no definitive test for this disease, no cure and it worsens over time. One neurologist told me that if you take one of the approved medications for PD and your symptoms go away, that will confirm the diagnosis. However, I do have symptoms consistent with the disease, slow motion movement, lack of motivation, poor balance (for me) and failing fine motor and cognitive skills. But, these could also be symptoms of depression, age or a combination of age and depression.
I find it so ironic that someone who loved movement and practiced it my entire adult life (through dance and exercise) has now been diagnosed with a movement disorder This is a good news/bad news scenario. On one hand, I believe it has prepared me to battle what I am dealing with, on the other hand, since I am so in tune with my body and how it moves from so many years of dance and training, I am much more aware of what I am losing.
The other irony I see is the medical community’s approach to treating PD and how that personally impacts me. The standard approach is to improve the quality of life and mask the symptoms by prescribing medications, very powerful medications that can have very unpleasant side effects. Sometimes these medications can cause the symptoms that the drug is trying to alleviate. This is a déjà vu for me in what Steve went through for his mental illness. Drugs are a treatment option for mental illness, many to choose from, all with potentially serious side effects. Steve was getting weary of the medications he was taking for his illness as they would lose their efficacy over time. Doctors would either change Steve’s medication, increase the dosage and/or add another drug to improve the chances of the first drug having a better outcome or to address the side effects caused by that drug. Plus, it could take weeks before it is know if the medication will work, and if it doesn’t, one needs to be “weaned” off the drug, only to start the vicious cycle all over again with a new med. This all seems to be a similar path for those on the PD medication journey.
Steve’s difficult experiences taking medications to help him with his mental illness is still fresh in my mind and I have been resistant to starting that path for my own medical condition. However, I am finding it more difficult to deal with my symptoms (symptoms and progression of PD are unique to each individual). How can I explain why I can’t cut my salad or wash my hair like I used to? How do I make myself move faster getting dressed in the morning? Why is it so overwhelming to look at a basket of laundry and think it will take me hours to fold the clothes in it? Why can’t I stretch and do intense exercise like I used to? Why can’t I hold a few marbles in my hand without them falling through my fingers?
I consider myself lucky that my symptoms are not that bad compared to what they could be, but, living life in the slow, uncoordinated lane is taking its toll on me. Two months ago, I decided to try a PD med prescribed by the neurologist. It took 2 weeks to find out it didn’t help my symptoms at all and made me feel worse (weak, shaky and dizzy). So, off that med and on to the next one. This time, it was only one day on the medication and I became so sick, (weakness, dizziness, vomiting, pounding headache) that I decided slowness and all other symptoms I was experiencing may not be such a bad thing.
What is my plan now? No more meds for me at this point in time. The doctor has another drug prescription ready and waiting for me, but the horrible side effects I experienced with the last medication are still fresh in my mind .
Instead, I will try to keep my sense of humor and laugh more at myself. Acceptance and gratitude need more focus in my life. My best friend since kindergarten has always said: “If everyone put all their problems in one basket, we would all take our own problems back”. My life could be a lot worse and I do have a lot to be thankful for.
For most of my life, I thought that I had always stopped to smell the roses, but perhaps the challenges I have recently been dealt in life are meant to slow me down even more to smell those roses.
Slow is the new Fast.