It is now 78 days since I announced my Life After Parkinson’s.
For me, right now, as I sit here on my bed, contemplating my day (which will include Sailonline admin-ing and racing, as well as getting to the post office with another knitted cotton prosthesis for KnittedKnockersUK), I am sharply reminded of one of the major differences between life as a relatively healthy person, and life for someone coping with the uncertainties of disease/disability. This is the ability to make plans, to set deadlines.. make commitments.
My life with parkinsonism was consigned into my history 78 days ago, when my spirits were released from the psychological cage of that diagnosis. Along with undoubted joy in the sense of once more having a “future” is the need to be able to make plans, to agree to meet people or have them visit me, to be able to engage in conversation/socialise, physically sit in a cinema to watch a movie, to get on with living outside of virtuality!
Most of the motor and non-motor symptoms that I have lived with for the past 9 years are continuing, as NewNeuro said they would. As I reduce the parkinson’s medication, though, logic dictates that those symptoms listed as side-effects should diminish but, nine years of chemically altering my brain’s functionality and the “soup” it is bathed in, means that no-one can be sure of the outcome.
To be told to expect no improvement and possible worsening of current neuro symptoms and the arrival of new ones is definitely challenging, so, typically, I do not wish to accept it while already re-strategising how I will cope.
My aim in the short(er) term is to find a way to manage those symptoms that prevent me getting out/about and physically engaging in the world, as well as those that prevent me from reorganising/managing my wee hovel.
In the longer term I wish to be able to make plans again! Realistic ones that I know I can keep to, without my having to suspend eating/medication and risk bowel obstruction. Plans that can happen without my having to ensure a “safe” destination. Things I can do for more than half an hour or so, before I begin to feel unwell.
Meanwhile….there is some good news!
I think my senses of smell and taste are returning!
Why do I think this? Well… the other day I smelled accurately for the first time in about 7 years! It sounds peculiar, maybe, but when you know how something should smell and have spent recent years not smelling anything or smelling something foul instead, to smell a genuine, recalled aroma is a real joy!! I actually did smell the coffee (after I had made it!). AND a couple of days ago I could also taste lemons in some lemon curd! I know these are only random aromas/tastes but it must be a sign of some kind of awakening!
At best it will be another 12 weeks or so before I am completely weaned off Stalevo. At that point, there will be a better sense of how I am going to be and, hopefully, I should be able to develop strategies to get back into the real world more frequently.
So…. watch this space!