Is it really a disease? I didn't catch it, I wasn't infected with it. I prefer to think of it as a "condition" or "disability", whereby my body is failing me, very much the same as age does to ones hairline, which I am inflicted with that condition too.
So how am I doing, 4 years in from my diagnosis? I am doing alright I guess. I have some regular issues that are constantly with me... tremors, walk/shuffle, balance and stiffness. There are another 30 or so issues that present themselves randomly from time to time. The issues can range from crying for no reason to struggling with spacial awareness when trying to park the car. So no two days are the same with Parkinson's.
Medication has been interesting. The main purpose of the medication is to try to replenish your dopamine levels that my body isn't producing. However the medication comes with some nasty side effects, and after 3 attempts with 3 different medications, with all 3 affecting me badly, I am currently off medication, by choice. I have a fourth medication here with me at home to start, but I am very hesitant. See the attached picture below with the very real side effects. The last issue was vomiting, violently. So my current position is that I can live a relatively ok lifestyle unmedicated. I can manage my symptoms day to day. So why do I have to gamble with the side effects of medication. The medical professional has advised me that I am over thinking it... really?? A neuro degenerative condition that is not curable... bloody oath I am going to over think it. From diagnosis I believe that you only have 10-15 good years, so I don't want to be adding to my issues with additional side effects. Plus the neurologist said that the medication will do nothing for my tremors.
My Parkinson's is very visual and for that when I meet a new person I am having to introduce myself and my Parkinson's. My line is "don't mind me, I have Parkinson's and my tremors have a mind of their own". I think I do this as I don't want to be mistakenly viewed as a junkie or alcoholic. For the record I don't really drink and have never done illegal drugs.
Parkinson's is also a very lonely condition. When I am on my own my issues are generally very minimal. However as soon as I start interacting with people it sets things off, and Parkinson's is extremely exhausting when it's all go. Even when a customer collects a gate, just the 5 minute interaction can drain my energy levels. I believe it's an anxiety issue. So when I do leave home I generally have a precise plan of attack. I'm winning when I can get in and out of the supermarket with out any interaction with people. Hallelujah for the self checkouts. So yeah it's the quiet life that helps me cope and I'm ok with that.
Parkinson's is mentally challenging, in that it's an extremely frustrating condition. There's no cure, medication may or may not help you, you may have a long life or not, and you never know what one day will be like to another.
A good example of this is Gary might suggest on Wednesday to have lunch with friends on Saturday. Well that's 3 days away... I just can't foresee that far ahead as to what Parkinson's has instore for me. This requires a restuarant reservation and a commitment to our friends... that is a lot of anxiety for me to make a decision.
Parkinson's is very frustrating for me, but sometimes I feel more so for Gary as he looks to me for an answer... and I just don't have one this time. I am a very calculated person, and I generally always have a plan in life, but Parkinson's has taken that away from me.
Another very real daily challenge is Apathy. Parkinson's effects your emotions and your interest in daily life... the lack of energy and willpower to care about anything. The "why should I bother?" I find with myself I'm constantly challenging myself to stay motivated and interested in life.
So yeah, 4 years in... I just wish that the people studying Parkinson's would bloody hurry up and find a cure!
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