In my experience since I was diagnosed with Young onset Parkinson’s disease 6 years ago, friends and family don’t really understand what the disease actually is and how it affects someone. Obviously, why would they? For the most part they only see me when I am fully medicated and without a visible tremor, even when I am ‘off’ or between the peak of each dose. Without a visible tremor the signs are not usually obvious, and how does anyone see rigidity and stiffness in action? If I stopped taking my Sinemet for several hours, then I could show them the tremor, but that just feels narcissistic and unfair on them, & against my desire to protect them from as much upset and worry as I can. But they would see a tremor then, and probably the stiffness & slowness too. Anyway, this got me thinking about how also when anyone looks into the condition online, they are either reading the classical clinician’s and neurologist’s descriptions of the symptoms of Parkinson’s or nicely edited patient’s descriptions from one of the many Parkinson’s charities and research organisations.
[I fully appreciate I am making a huge generalisation here & its only my impression, which may be completely untrue.]
“Parkinson’s is an insidious disease” to quote my Aunt describing it , at my Uncle’s funeral (he had battled Parkinson’s from age 53 to 67) , co-incidentally, shortly after I had been diagnosed. As my condition worsens, the more insight I begin to get about what she meant. In fact without the prospect of DBS, which I am hoping to be able to have soon, I would be quite fearful and depressed about how I would be coping with the disease within the next 5 years.
It’s not about being dark and negative though, it’s about a real challenge, as I see it for the benefit of everyone, to communicate what Parkinson’s means. To better describe in a more honest and direct way what Parkinson’s actually does to you and how it impacts and affects your life.
So I am trying to find a better set of words to help anyone (including myself, strangely ….perhaps cathartically ) understand the condition, its management, my version of it, and the daily impact and hourly differences in how well I feel and the variability in my physical ability.
So I will see where this all ends up, and I began trying to better describe some of my symptoms in my post A Typical Day (5 years post diagnosis)
I have also started the following list of the battle I feel I am in:
1. The physical battle and torment of tight, stiffening and cramping muscles, of complete immovability or the sheer effort to initiate movement, to the disturbing feeling of intense agitation and restlessness, & from a weird feeling of internal vibrations rippling through your body to full blown uncontrollable tremors.
2. The battle against the physical secondary symptoms – the knock on impacts of the primary symptoms & side effects of medication.
3. The mental battle against the slow & progressive physical disability.
4. The side effects of the Parkinson’s drugs.
5. Cognitive decline & march towards Parkinson’s dementia.
6. The fight to stay positive & the ups and downs of acceptance both daily and long term, denial and apathy.
7. The addiction to Levodopa and turmoil of dyskinesia and dystonia.
8. The fear of the future & desire to protect your loved ones.
9. The lack of a real holistic treatment & prognosis.
10. The battle to sleep through the night (last but very not least!)