Themighty.com issued a writing challenge; create a metaphor to describe your condition or a symptom of it, so someone completely unfamiliar with it can get a glimpse into your world.
In 2015,I was diagnosed with Parkinson’s Disease (PD), six months after the suicide of my soul mate of over 33 years. Here is a small window to my world for those of you who know nothing about PD…
Fluidity, grace and balance, skills I developed as a result of training for years as a dancer and an athlete, are now replaced with rigidity, stiffness and clumsiness. My ability to write legibly, something I got my knuckles cracked for in parochial school if I did not do it properly, is gone. I wonder why my computer is doing strange things until I look down at my hands on the keyboard and see a finger is consistently pressing a key and I had no clue. I feel such a loss of control over what my body does now; it has a mind of its own that I have no jurisdiction over. I am trapped in a body that is no longer the one I had lived in for over 63 years.
Bradykinesia, a defining feature of PD, means “slow movement.” Almost as if I am on the outside looking in, sometimes I feel as if I am staring at myself in disbelief, trying my hardest to will my body to move faster, only to be ignored. Sadly, instead, I see a windup toy that has slowly unwound to almost a complete halt.
My fine motor dexterity is impaired and seems to worsen on a weekly basis. At times, it feels as though I have reverted to being like a child since I have to re-learn how to do the simplest of life’s undertakings, like putting money in a wallet or tying my shoe. Putting papers into a knapsack can overwhelm me.
Depression and lack of motivation abound with PD. I cry on a daily basis. The sobbing can start just by watching a happy couple on a game show or hearing a sad song on the radio. For someone who would train at the level of a professional dancer or who had the drive to train with a heart rate monitor while pursuing endurance sports, I can barely cycle 6 miles on a bike at 10 MPH, turning my legs at no more than 65 RPMs. I have lost strength, not just while lifting heavy things, but also for performing simple everyday living tasks, like pushing a door open. I struggle with maintaining confidence in myself as I always feel weak and shaky. Exhaustion is my daily natural state of being, even if I had a good night’s sleep. My ability to remain vertical used to fade out at around 4pm, so much so, that I would have this urgent need to get horizontal. Now, I fade out around noon and have to get to bed ASAP.
One may look at me and think I am in good health. however, things are not always as they seem. I have tried to wear the brave face and be optimistic and positive, but, I am starting to strain to maintain this false sense of well being. I am trapped in my own body. Yes, I am learning to adapt and try to do things differently to overcome my new challenges, however, there may come a time when that is no longer possible on my own and this weighs heavy on my heart. I try to live in the moment and not worry about the future, however, I am only human and sometimes I dwell on my not too distant future.
On a daily basis, I experience such a high level of frustration and I am constantly mourning new losses of things I took for granted in the past. As an example; last week, I could not slip my left foot into a shoe. At the early onset of my PD symptoms, I was unable to keep a clog on my left foot while walking, now, my left foot just doesn’t move properly anymore. Things like washing my hair with both hands or petting my rabbit with my left hand are no longer possible.
Six neurologists have diagnosed me with PD, so , I am coming to terms with accepting that I have this disease. More than one doctor has told me people do not die OF Parkinson’s, rather, people die WITH Parkinson’s. I am not convinced this is good news. PD is incurable and it progresses in varying rates in different individuals. I used to wake up every morning hoping my PD was misdiagnosed and that it was just a bad nightmare. Now when I wake up, I hope I can still do the things today that I used to do yesterday.
So what is my plan? I will continue to exercise, stretch, go for physical therapy and with what little motivation and energy I have , I will continue to search for relief from this disease. Being on a plant based diet and natural dopamine supplements for over six months has not worked for me. This week, I will try acupuncture and Chinese herbal medicine.
As I understand it, PD medications only mask the disease symptoms and do NOT halt the disease progression, Now, even though I was so against taking the PD meds in the past due to my initial bad reactions and side effects, I am now going to also consider re-taking PD medications and/or antidepressants. Even though the meds may eventually lose their efficacy, I have to try to improve my quality of life.