I recently watched an interview with Julianne Moore, Golden Globe Award winner for her role in the movie, Still Alice. Still Alice tells a poignant story of a woman who develops early onset Alzheimer’s. In a scene from the movie, Alice is speaking with her daughter, played by Kirsten Stewart. Her daughter asks her what it feels like to have Alzheimer’s.
I realized watching this scene that I rarely tell people how I feel about having Parkinson’s. [Well, to begin with, I don’t really think of it as Parkinson’s Disease, because what it really is, is a neurotransmitter imbalance, but for simplicity’s sake and because most people refer to it as Parkinson’s, I will do the same for this post.]
How I have felt about this condition has changed over the years. For the first couple of years after diagnosis, I really didn’t feel anything out of the ordinary. Perhaps I was experiencing blissful ignorance. I thought Parkinson’s was just trembling and the trembling wasn’t too bad, so I wasn’t worried. If anything, I felt very confident that I would overcome the condition. Then in 2010, as the trembling worsened and I started developing more symptoms, blissful ignorance was replaced by concern [although, not enough concern to dampen my belief that I would heal myself]. By late 2013 and early 2014 I was worrying constantly about my worsening condition and lack of success in healing myself. Then in March of 2014, worry turned into outright fear when I started having panic attacks over the thoughts of becoming completely immobile. Fortunately, I learned a great deal in a short period of time about the role of fear in the onset of Parkinson’s, so I got through it very quickly.
These days, what I’m feeling much of the time could be characterized by one word, frustration! The frustration has mostly to do with struggling to do all the tasks that I used to do without thinking about them. Things like, ironing my clothes, opening an avocado, pulling up my pants, folding the laundry, doing up zippers, etc.
I do also get frustrated with the symptoms I experience from the standpoint of the relentlessness of the issues and false beliefs that keep coming at me that I need to resolve that are at the root of these symptoms. But at the same time, I am very encouraged by what I am resolving and what I am learning through this process.
I suspect the frustration I’m feeling wouldn’t surprise most neurologists given that the neurotransmitter imbalance that is PD, leaves one feeling, at the best of times, very irritable. But then this inspires me to practice acceptance, which is a good thing.
What I am also feeling, and what I’ve felt since the beginning [it was only dampened during that brief period of time when I was dealing with panic attacks] is optimism! I have believed since day one that I would recover my health and when I learned about Bianca Molle, John Coleman and Howard Shifke achieving full recovery, my optimism went through the roof and it remains sky high.
I think it is important to talk about how you feel, particularly if you’re feeling scared or depressed or angry. But do so without putting yourself in victimhood. Realize that what you are experiencing has a purpose, even if that purpose isn’t apparent at the moment. And speak to someone with a compassionate outlook and who is not prone to passing judgment.
If you want, send me e-mail and tell me how you feel. I will be happy to reply!
In the meantime, have an awesomely optimistic day!