Parkinson's Disease Is a Thief
Last updated: June 2023
Parkinson’s is a funny old disease to get your head around. I do not mean funny in the classical "LOL" sense ... but I mean funny in the sense that, to me, it is a dilemma, wrapped in a riddle, enveloped in a cocoon.
I cannot quite figure it out. There are layers to this disease. Layers to the plethora of motor and non-motor symptoms that I currently experience (and will begin to experience in the future.)
So, just when I think I have reached a degree of understanding in the delicate daily management of my symptoms, a new layer or unsuspecting surprise is revealed. This means I am unexpectedly thrown a curveball.
For example, a new symptom might suddenly appear, or an existing symptom might drastically deteriorate in severity. Or perhaps the unexpected change might be that, without any warning, a tried and tested Parkinson’s medication that I have taken for years might suddenly stop working.
This example is particularly problematic because it can lead to a noticeable deterioration in symptoms, anxiety about the progression of the disease, and challenges in managing the daily devastation of the pain and discomfort of the disease.
The challenges of a neurodegenerative disease
There are lots of challenges that I experience with having this diagnosis. For me, some of the more worrying and problematic are:1
- It is degenerative. As time progresses, my symptoms will only get worse.
- There is no cure, and if I am being honest, I am highly dubious there will be one in my lifetime ... if, ever.
- The advancements in medication have been slow. The principal medication (levodopa) prescribed was first discovered in the 1900s.
- The progression of my disease is unpredictable and unique to me. It has been quite aggressive in a short space of time.
- Pain is becoming a more problematic issue as the disease progresses. In the beginning, it was never an issue.
Grieving what I have lost due to Parkinson's
However, the biggest challenge (and therefore the hardest thing to accept) about this disease is its sneaky thief-like tendencies. Without any warning or without any sound reason ... it surreptitiously snuck into my life. Upon its shocking arrival, I experienced a loss of many, many things. I experienced a type of grief I had never encountered.
For example, the first thing it stole from me was my ability to be a competent and capable parent. For the first 2 years of my precious daughter’s life, I was rendered utterly useless and dependent on the goodwill of those around me. My family was forced to altruistically rally around and care for us both, while all silently shocked and saddened by the visible deterioration in my mobility.
I was undiagnosed. Unmedicated and thus very immobile. I was bereft that I was unable to cuddle and care for my baby girl in the way I wanted to. The only thing I could do during this terrible time was stay seated on the sofa. Stiff, stuck, and sinking into a sea of sadness.
The mental decline
Parkinson’s disease knocked me further down by stealing my mental and emotional well-being. This was the second notable loss that I experienced. Previously, I had possessed a happy, go-lucky demeanor. I had a vibrant social life, and I enjoyed a range of hobbies and interests. I enjoyed being alive. I had a zest for life.
During the 18 months it took to diagnose this disease, I found myself schlepping and dragging my stiff, slow, broken body to countless doctor and hospital appointments. I experienced an endless barrage of the same, dull, and repetitive lines of questions. I became a mumbling parrot, reeling off the same sequence of events of how I had noticed the first symptom when I was commuting to work ... blah ... blah.
Depression and disability
Meanwhile, behind the scenes, I felt the devastating mist of depression descend into my mind. A negative, deafening, and destructive cacophony of thoughts dominated my mind. Thus, as well as struggling with a physical disability, I was now going to have to struggle to manage and come to terms with an intensely debilitating "reactive" depression. Huzzah! A double whammy of depression and disability engulfed me and became a part of my daily reality.
So, sadly, the joy for life I had once possessed drastically diminished and dissipated with the advent of this disease. When my health changed and I became housebound, or more accurately (as I mentioned previously), "sofa bound." I was forced to silently weep over the demise of my mental well-being.
Evidently, other various minor and major losses have also been experienced in the decade since I was diagnosed. But I am curious, what losses have you experienced and have some losses been harder to accept than others?
Do you experience issues with spatial awareness?