Well I made good use of my time while I waited for the sun to come up and created a "One Face Of Parkinson's Disease" Group site on Facebook.
Facebook is a closed group for my privacy but if you'd like to follow me an you're not an invited member email me through the comment form.
Had an amazing day with friends today. Went to brunch at our favorite Sunday morning riverside restaurant, The Downtowner, then it was off to the sandbar on our boat to play with the other 50 or so local mariners. We cast our anchor into the shallows and got a reprieve from the 90 degree heat. Spent the next couple of hours basking in the sun and fun and enjoying our good company.
Unfortunately I didn't notice that somewhere in the shallows my Neupro patch must've washed away.
Gradually as the afternoon wore on and then into evening my tremors started rocking and rolling progressively and then with a vengeance. Usually I can lay down and as I get sleepy the tremors subside, but that was not happening tonight. In fact at about 11:30pm I was getting rather annoyed. I started to cry. Why is this happening?
It was my husband that asked the magic question.... "Is your patch still on? I didn't see it when you got out of the shower." Wait!! I jumped up and took my clothes off. GONE!! Thinking back I've been without it for about 6-7 hours now. ONLY 6-7 hours. And I already resemble Michael J Fox on only one side of my body. I roll my eyes.
I'm not sure if I will ever get used to the strangest feeling one can ever have. How can you turn your head to your right and be completely relaxed (I gaze at my hand; open and close it nice and slowly - yup, still very much normal), then turn to your left and witness a rhythmicly rolling shoulder, stick straight fingers that continuous wave hello like they are overly happy to see someone and a cramping left quad all writhing uncontrollably. It's like having a split personality!!
Even though it's been 2 1/2 years of active tremor, because my right side is normal, in my mind I escape and typically live full time on that side. I cope on that side. Its a constant reminder of who I was. The Lisa of my still near, very vivid memory that helps steal my reality for me. This has got to be just a bad dream.
I put my patch on around 11:45. It's almost 2am now and there's no change. Bummer! This has happened before. I should have suspected it earlier. I'm in for a long night. I might as well put it to good use and pray for a miracle. I can use the extra help.
Sleepless in Fort Lauderdale,
Received my newsletter from PAN today (The Parkinson's Action Network) and it included a story about a man in Seattle that is my age, was diagnosed at the same time I started tremoring AND is only affected on his left side. He underwent successful Deep Brain Stimulation surgery that is becoming more safe and more commonplace. Miraculously he no longer tremors and is off his meds.
Read his incredible story here
Maybe it's my miracle too one day?
PS: If you don't already get their newsletter I encourage you to sign up for it at parkinsonsaction.org. It's the best resource for culling the most current information.
Thank you Aunt Diane for introducing me to Partners in Parkinson's. If you have PD or know someone who does this is a "must have" in your toolbox.
I never knew there were advocates out there dedicated to supporting me and you. Sign up to have an advocate call you. They are trained to help identify all the resources you need to help you live well and cope with changes as they happen.
They also sponsor educational events in a handful of major cities. If you are lucky to live near one I encourage you to take advantage. Learn what's on the horizon. And get that all important group support.
Here's to your health and mental well being!!
Do you need support?
Find us on Facebook at:
"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
Connect with me online:
"Lisa Chalker is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."