The first in a three part blog series:
The shock of the Parkinson’s diagnosis came in August 2017. It was ultimately made by consultant neurologist Mr. William Gibb, privately in Southampton. My symptoms finally made sense to me. Muscle stiffness was preceded by unexplained symptoms of sleep disturbance with vivid dreams (5 years); shoulder stiffness (5 years); severe constipation (1 & ½ years); slow walking (2 years); and excessive sleepiness during the day (2 years).
Looking back, the following would have been useful at diagnosis:
- More explanation and information about likely causation and pathology. After a brief consultation I was given L-dopa and Sinemet-Plus 100/25 4x daily without any further information.
- On a related note, rather than wait six months for diagnosis on the NHS, early needs assessment could have been offered, including a full multidisciplinary review covering muscle movement, walking, exercise, nutrition, stress management – all leading to a personalised activity/action plan.
- To know that the course of the disease is very individual with up to 50 subtypes. A recent research study suggests the main division is into two broad categories: Gut, initiated and preceded by Type-2 Rem sleep disorder, and brain/substantia nigra substantive pathology. My own history points to gut initiated.
- That treatment needs to be tailor-made to the individual. There are evidence-based strategies and services available to support staying well with Parkinson’s in numerous different ways, rather than simply fearing inevitable decline.
- A clear explanation of the condition itself. As detailed on the INS website “Parkinson’s Disease (PD) is a progressive condition caused by reduced levels of a chemical called dopamine in the brain [and the gut and muscles]. This can cause tremor, slowness of movement and rigidity of muscles.”
- Finally, for my partner, Helen to have been more involved in the explanation with information on support provided to her as well.
My overall aim is to stay as well as possible whilst living with Parkinson’s. I further wish to understand the various mechanisms of the drugs available (including L-dopa) that I was prescribed at diagnosis.
As background to this aim, I later learned that increasing intake of L-dopa leads to abnormal movements (on or off movements / dyskinesia), resulting from side effects of the medication and accumulation of 3-0 methyldopa as a toxic byproduct of L-dopa and de-carboxylase inhibitor intake. As tolerance increases, so the likelihood of these difficult to manage side-effects increases, rather than progression of the disease itself. This surely would be useful information at the outset?
More details on my struggle to make sense of this complex condition and treatment options are detailed in my previous blog posts (do feel free to scan the archives). A key reference worthy of additional reading is: RJ, Dobbs SM, Weller C, Charlett, Taylor D, 2017: “Time lag between establishing clinical pharmacology principles and advances in practice: the case of tolerance to Levodopa”: J Pharmacol Clin Toxicol 5(5): 1084.
In my next blog, I will recount my search for a multi-disciplinary approach to the treatment of Parkinson’s – a journey that took me to Italy and the European Centre for Parkinson’s, but in the meantime I will leave you with a poem I wrote on first being diagnosed. The initial impact, as well as bursting into tears – prompted me to write this piece, which I hope might be of use to explain not only the physiological, but also the emotional impact of diagnosis.
Ripples – by David L Beales
In time age gathers momentum
Muscles feel stiff and energy dips
Love of life keeps my spirits up
Counting my blessings guides me still.
Each new day has an ebb and flow
I wait for the rip tide to pull me under
Just breathe and with each breath
Return to firm ground once more.
Staying alive to love and live
Ripples of calm to rise and fall
New birth to celebrate afresh
And my stiffness has a name.
Parkinson’s makes sense of small steps
Stiff shoulders and energy dips
Not a name that conjures magic
But finally, to understand and tame.