“Accept - then act. Whatever the present moment contains, accept it as if you had chosen it. Always work with it, not against it.” -Eckhart Tolle.
It’s been some time since I’ve written about Parkinson’s disease. Not that it doesn’t want to be heard as it does make itself known but I tend not to give it a voice and I really should give it it’s due for awareness is the best medicine. This post also comes as a special request. So to my benefactors, here goes.
As with many other disorders, especially cognitive, outside appearances can take on an air of normalcy, like nothing is wrong. But as in the adage, don’t judge a book by its cover, don’t judge a Parkie just by Tremor. There’s more that goes on than one wants to admit, hidden in the depths of a brain running low on dopamine.
The most telling outward sign that someone might have Parkinson’s is a hand shaking uncontrollably, called ‘tremor’, it can affect either the left or right hand or both. Another sign may or may not present itself as difficult is walking which is prevalent in my situation.
I walk in short steps, my shoes wanting to drag or skip the floor or pavement, arms not moving. I look very mechanical with my back and head slouched forward. In a way, I look like I’m frozen. I’m currently going through rehabilitation to actually learn how to walk properly.
From here on out the symptoms are mostly hidden…
Anxiety and depression come to me in the early hours of the morning. I can’t sleep from fretting over all I need to do and getting more and more overwhelmed. And I’m anxious over things I’ve done a thousand times. The next morning I have to laugh at the fear that was coating my mind. I take medication for this and it does help.
Difficulty sleeping affects me. I can go to bed at any time and I will wake up after 5 hours of sleep, like clockwork. In addition to a lack of sleep, I get restless and can fatigue easily; but neither of these seems to cause or aid in the difficulties of the others as you might think fatigue can help me to sleep a bit more than I do but that is not the case. On some nights, I can get up 4 or 5 times to use the bathroom. Drinking less hasn’t an effect on it.
At times when I’m usually relaxed at night-time, my arms or legs move involuntarily for no reason it seems. Just a movement out of thin air. This is dyskinesia.
Lack of cognition has been the most unsettling symptom of Parkinson for me from forgetting what’s being said in a conversation to not understanding simple words or phrases. You feel lost from this unsettling notion of your daily life as they become embedded in a quagmire of hopelessness. Thank goodness for Parkinson’s old standby medication, Carbidopa-Levodopa for I can think and remember. As a dotted line from cognition issues points to changes in my speech patterns.
I frequently get muscle spasms especially when trying to get out of bed. And along those same lines, my sciatic nerve will act up without notice sending a sharp pain down my leg. Stiff muscles and slow moments are the norm in Parkinson’s but especially during muscle and nerve contentions.
Last of all, for now, is I’ve lost most of my sense of smell which makes tasting food quite difficult as they go hand in hand. In fact, I’ve noticed a craving in me for sweets like chocolate and for spicy foods. Now I’ve always liked sweets but it’s taken a drastic turn. The cause of this, I’ve learned is a loss of smell and taste. Your body craves in excess what it can’t taste anymore.
So it is as of this day. I’ve always advocated not complaining and this is probably the most I’ve said about my ongoing symptoms to anyone except my neurologist. There are other symptoms not local to me as of yet. The ones I’ve listed are my day in a life.