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!!
The one thing I've never been is one who likes to exercise. I've always been slim so have never had to diet or lose weight. I also come from a sedentary family. Exercise was never encouraged or suggested for that matter in the 60s and 70s. Everywhere you read about PD the doctors say "Exercise, exercise, exercise". I say "UGH!"
I feel relatively well on my medications. There isn't any barrier to exercising, except for increased tremor in my left arm and hand when my blood pumps. That would tend to make me (and I'm sure other tremor sufferers) avoid exercising in public as I hate that to be an attention grabber. I thought I might begin with a piece of newfangled equipment they have out for use at the office. I'm in my own private space. And I can keep working. Good combination. But will I like it and stick with it???
As one who doesn't exercise, just researching exercising makes you feel like you've accomplished something without having to break a sweat. I kinda like that. I made sure to spend a lot of time on research!!! Even drank Gatorade to rehydrate.
Not too long after I came across the DeskCycle Exercise Pedaller. Hmmm. I really enjoy a casual bike ride but don't take time out of my day to do any. This could be interesting. It received fabulous reviews. It's only 10" tall so fits neatly under any desk height. Pleasant to look at; it appears in pictures to be very sturdy and uses magnetic resistance for silent operation so I won't bother other people. Love the price: $160 with free shipping from Amazon. I was contemplating a gym membership, but at almost 50 years old know myself very well; I won't use it so will waste $35 or more a month AND feel guilty every day. I ordered it.
My DeskCycle arrived on Tuesday this week and my McGuyver husband put it together. (Actually it's simple to do. A few screws and it comes with it's own tool.) He installed it under my very small, very short metal and glass desk. I secured the Velcro strap included to my rolling chair and put my feet in the peddle straps. That's all it took to get started.
I hate to giveaway the ending but I love this machine!!! I wasn't sure if my knees would clear the desk (they do), if I would be able to work and peddle at the same time mentally (I can!), or if it would make me break out in a sweat so badly I would need a shower at the office (I must not be completely out of shape because no sign of this). The DeskCycle lives up to the write ups. It is sturdy, silent, and provides a smooth pedal. It feels similar to a recumbent bike. I am pleasantly surprised and actually look forward to pedaling every day!!! Yes, I just wrote that.
I pedalled as much as I could fit in for the past 3 1/2 days as I'm getting used to making it a part of my day. It suprisingly added up to 20 miles. It certainly don't remember pedaling that far or for that long. One great thing is you're distracted from exercise by your work!! You could clock dozens of miles and not even realize it. PERFECT! Just like researching you get that high of imagining your exercising, except now you're actually doing it.
After the first day I noticed my thighs were sore (I'm starting off with a tension level of 5 out of 8). By the fourth day my legs do not feel as shaky when I walk. Markedly noticeable while strolling with my dog. Hmmm.
I betcha if I keep this up it really will improve my balance, my muscle tone, my posture (it makes you sit up straight in your chair - awesome bonus), my strength and maybe even trim my legs, thighs and butt. Forget all of that - the DeskCycle is plain fun and easy. Definitely worth the price and I highly recommend it.
Check back with me for updates. I'm hoping this inspires me to add free weights to tone my upper body and then feel confident about that yoga class. Wait, let's not get too ahead of myself. Anyone have a cookie? 😀
Wear Your Heart On Your Sleeve
"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."