A Day in the Life of Parkinson’s

If I can give one piece of advice, that could save a newly diagnosed patient a ton of heartache, it would be to NEVER agree to family counseling while you are:
A) still in shock;
B) not on any sort of dopamine replacement; and,
C) feeling suicidal. 
These definitely do not mix well. 

I guess I survived because I am here to tell the tale but “man” that was a very tough day and night…not just for me, but for my husband, as well.  You see, he had to pick up the pieces and put me back together.

That evening was the one where the entire dam came down and the flood gates opened. To be honest, it was barely holding anyway.  I was rethinking the events of the day and realized I could not remember most of them, nor could I recall exactly what was said and what was imagined, in my confused state, but the agony of realizing that I, a total control freak, no longer have control was more than I could bear. 

I screamed, I cried, I cursed, and I took out my favorite lipstick and wrote “FUCK YOU, PARKINSON’S” in all caps across my bathroom mirror.  I only wish I had not used my “favorite lipstick.”  (Note to self: The next time you feel the need to destroy something, use something you really don’t care about!)  As I climbed into bed next to my husband, I cried, “I used my best lipstick to write on the mirror.”  “Why would you do that,” he asked.  Silly me, I thought he was asking why I used my favorite lipstick.  No…he wanted to know why I wrote on the mirror.  I told him, in between sobs, “because I sure as hell cannot go out in the middle of the street in my pajamas and scream at the top of my lungs, “FUCK YOU, PARKINSON’S!”  “The neighbors might think I’m crazy, but you already know I am!”  With that, he just wrapped his loving arms around me and held me tight while I purged myself of every ounce of excess fluid my tear ducts could release and it took quite a while.”  I would like to think that this is the end of the grieving and the acceptance can begin…but I cannot be certain and definitely expect more not-so-terrific moments. 

“Ken, as long as you are here to hold me….I can handle anything this disease throws at me!” “I promise to never consider the easy way out.”

I do know that Sunday was a wonderful day.  I went to church with my niece, who lives with me, and took my 5 year old granddaughter.  It was my second visit to this church and the first time to actually go out in public, on purpose, knowing that I would shake and people would notice.  I sucked up all of my inner strength and walked right up to the front (third row) and sat in the center.  Front and center, I told myself. Yes, I shook and tremored almost the entire time.  I raised my hands to the Lord in praise and they were shaking…but God didn’t care….I was right where He wanted me and I was right where I needed to be.

After the service, I introduced myself to the pastor, who was wearing flip flops, by the way. During his entire sermon, he did not know that the lady with the tremors, on the third row, was the same lady he had been praying for since her diagnosis.  I thanked him for his prayers and assured him I would return next week.  I think I can really appreciate a pastor who feels comfortable preaching in flip flops.  I find it rather symbolic!

I haven’t really shed any more tears.  I have said no to family counseling, other than the already scheduled session in 2 weeks.  My husband and I both feel it is important that I am in a good place emotionally before we tackle the emotional scars of our family, left behind by years of an invisible illness. 

Each day brings new insight and small victories.  I will be grateful for what I am given….for, I know, there are others suffering much much worse.

I see another neurologist this week and will keep writing, as this new life unfolds.  Blessings to you all!