Well lookie here!!!! My new medicine has kicked in. I’m speechless. My feet are not turning inward any longer and my legs feel strong. First time in 3 months I’m headed out to ride. Starting off slowly. Hey, Coach Bleich, let’s roll, brother. ❤️💚💛💜💙
I have been struggling with my balance lately. If you are experiencing the same, grab a bike and go for a ride. It stops tremor (temporarily), improves your balances and raises your endorphins. Plus you're not cooped up inside feeling sorry for yourself. Get out and enjoy the fresh air!
Kindly pardon the language unbecoming.....
Yesterday was Sunday, January 15th. The 8th Anniversary of my first doctor visit for a complaint that consisted of "why does it feel like the left side of my body is dying off?" My PCP looked at me and said "Dying off?". I said "YES! Weird, isn't it?" That was January 15, 2009. And that conversation sent us on a very long & expensive 5 year odyssey that landed me in a movement disorder neurologist's office in December 2013 with the proclamation that "Yes, the DATSCAN does show that, in fact, you have EARLY ONSET PARKINSON'S DISEASE" The Michael J Fox kind. Welcome to your new life. Today marks 2,920 days.
How was my anniversary? Well, Sunday was a beautiful day connecting with friends, catching up and making plans. A great distraction for me because, physically, it was a really shitty continuous tremor day. The non-stop, calorie burning, adrenaline rushing, can't sit still, pain in my ass (and legs and curled toes and stiff fingers) that ultimately won't let me go to sleep just to piss me off kind of day. LUCKILY, that experience is NOT my every day. I am one of the fortunate. But here is what I have to say.......Parkinson's - I am not giving up. You like to test my endurance but I take whatever you throw at me every single time. I had no idea how tough my will is until you came along. Tonight I say my prayers with a smile on my face that says, "I WIN". I will never, ever, ever give up. Ever. The less I pay attention to you the better off I am. Tomorrow I will wake up and the new day will begin calm once again. And I will make a positive difference in someone's life.
I'm on a mission. Just try to stop me.
All signed up to walk again! Continuing our efforts to raise funds for research by participating in Moving Day Boca Raton, benefiting the National Parkinson Foundation South Palm Beach County Chapter on November 16th, 2014.
I learned through the advocate given to me by Partners In Parkinsons, Maggie Barnett, how important exercise is in delaying the progression of Parkinson's Disease in the brain. She strongly recommended that I research the LSVT Therapy (Lee Silverman Voice Treatment) BIG Program and find a PT clinician in my area now while I'm still in the "early to mid" stage of the disease. She advised me that the program - developed in 1987 - has a proven track record of helping to retard PD and as a bonus I can put the techniques I learn in my "toolbox" to use for the rest of my life.
I did my homework online and with my insurance company. Online there are incredible videos on You Tube of before and after program results. I was stunned. Older patients barely walking nto the clinic practically jog out 4 weeks later (the length of the program). How could that be? I called my insurance company and found out they cover 100%. I'm in!!!
Through the LSVT Global website I found a few program certified PTs in my area and settled on HealthSouth Rehab. There I met Erica Leiva, my amazing PT friend. For 4 weeks she tested me, put me through my exercises, challenged me to balancing acts NORMAL people can't do(!), and made me smile every morning for 4 weeks. She improved my balance by a good 50% and counting. I made her stretch and learn to count to 10 while gabbing the whole time. (Was that 10 or 15? Who cares 😄). We had fun and I stopped being dizzy when I sat up in the morning; I can close my eyes in the shower without falling over; and I annoyingly test all my friends and family to make sure they improve their balance into old age. Erica has made me a crazed advocate for the LSVT Program. And I highly recommend it to any and all PD patients. Trust me, you need this program just to affirm you're not crazy. It really is your brain playing tricks. But you can fight back and reverse the effects. It really works. Thanks Erica.
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? 😀
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"Lisa Vullo 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."