I am a wife, mother and grandmother. Never in a million years would I believe that I would have a stroke and Parkinson’s disease. I was always so active, working out at the fitness center. I was diagnosed by Dr. Zesiewicz when I began dragging my leg. Going back through my medical records, I had tremors in 1987, but the doctors kept saying it was my nerves. I was known for my multi-tasking. When I didn’t work for money, as a manager and mortgage underwriter, I volunteered as the manager for the Navy Relief Society, a budget counselor and helping families in need. I have also raised funds for the Parkinson’s Unity Walk.
My husband, Larry is my best friend and care-giver. In fact, the reason Larry retired early, was to take care of me. He helps me do the things I can no longer do by myself such as vacuuming. I am slower so I prefer not to drive. We often do our chores together. I tell him that he is not retired but we both are on vacation forever. I also deal with slowness and rigidness with Parkinson’s. The stiffer my muscles get, the higher the pain level. My Dystonia, the curling of my toes, both feet twist inward and my muscles in my calves’ cramp as well. It truly feels as if someone is trying to twist my feet of off of my legs. I now receive a Botox which works wonders for me.
I hunch over when I walk, using my walker or cane. My power wheel chair, gives me the freedom to shop or I use it when I have my many bad days. I survived a stroke and was paralyzed on my left side and worked very hard in physical therapy for a year, to be fortunate enough to regain nearly 99% of my bodily functions. At first I asked “Why me” and then I realized, why not me? By giving in, then I can’t live. Sure I have my bad days, but I am alive! I could be full of self pity, but that is not the person I am. I have so much to live for.
Yes, I am blessed. I could give in and let this disease take my body away from me, but I will not. I survived the stroke and Parkinson’s Disease is another battle that I fight to win, because I will not give in.
My Husband Larry and I went on vacation on May 18, 2011, promoting Parkinson’s awareness. We own an RV and we call our travels, “RVing With Parkinson’s” ~ Helping each other along the way!
We traveled to Western Maryland and Northern Virginia, visiting family and friends for a week. We traveled across country to Arizona and worked our way up to the Glaciers before taking a different route, back to Florida on August 7, 2011. We have been able to see our beautiful country, meet so many caring people and feel so fortunate to be able to spread the word about Parkinson’s Disease. At the present time, there is no cure for this progressive disease. It is important that people are aware of the symptoms and see their doctor if they have the symptoms.
For those of us that have Parkinson’s Disease, realize that you are not alone; join a Support Group locally and/or on the internet. I have learned through the years that exercise is important and try to think positive instead of negative.
I have a seven pound Maltese, named Spencer, which was trained, tested and certified as my Service dog. Having our dog, Spencer by my side, people continue to be curious as to how he is my service dog. I explain to people about Parkinson’s disease, pass out brochures and let them know what Spencer does for me.
Yes, I am blessed. If you see an RV called a Phaeton that is a light cream with Black designs pulling a Red Jeep Liberty- Honk your horn! You never know where we may show up next!
I have a blog showing pictures of our adventures: http://rvingwithparkinsons-margie.blogspot.com/
Margaret Swope. My nickname is Margie.
ESCAPE FROM THE ROCK
On Sunday, July 24, 2011, with encouragement from Dr. Theresa Zesiewicz, my neurologist, I competed in, and finished, the Escape from the Rock triathlon in San Francisco, CA. Dr. “Z” asked that I tell my story of the Escape
First a little background. In October 1999, at the age of 53, I ran my first marathon, the Marine Corps Marathon in Washington, DC. At about mile 13 when my left knee starting to hurt badly. I managed to finish and, with rest, the knee recovered. I didn’t run much for a while but when I started running again, over time, I noticed that my right foot was turning out and I was actually kicking my left calf with my right heal. During this period I completed a couple of short distance triathlons without difficulty.
In 2000 we moved to Sarasota, FL and I started running more, riding my bike quite a lot and participating in more triathlons. Between 2002 and 2009 I entered and finished six Ironman triathlons.
But, starting in about 2000 my foot drop and foot turn-out was getting slowly but progressively worse. Between 2001 and 2002 I saw several doctors including an orthopedic surgeon, a heart specialist and a vascular surgeon. The orthopedic surgeon suggested that perhaps the fascia on my right calf was restricting the muscle and therefore the muscle was impinging on some nerves. In 2002 he performed a fasciotomy on my right calf. Unfortunately this did not solve the problem. A second orthopedic surgeon xpecializing in sports injuries assessed the situation and concluded that additional orthopedic surgery would not be helpful.
Sometime after the surgery I was referred to a neurologist specializing in adult neurology. After a series of interviews, examinations, and tests, on April 22, 2002 she diagnosed me as having Parkinson’s Disease. She advised me that Parkinson’s is a progressive, degenerative neurological disease for which there is no cure. She started me on carbadopa/levadopa and experimented with several other supplemental medications. She retired from private practice and I have been a patient of Dr. Zesiewcz since June 2007.
Over the past few years my symptoms have progressed. The disease and the accompanying medications have presented challenges common to people with Parkinson’s including, depression, sleep difficulty, balance issues, cognitive impairment, stiffness, facial rigidity and more. But I have continued to exercise. I don’t ride my bike much now as I have difficulty making complete rotations with my right leg and running on flat, hard surfaces has become very difficult and unpleasant. I still swim often but when in fresh water I have to use a “pull buoy” between my legs as I cannot maintain a continuous kicking motion. Swimming in salt water or with a wet suit is much better due to the added bouncy.
I have “discovered” trail running and find that the change in terrain and pace coupled with the softer surface suits me quite well. In May, 2011, I completed a 10 mile on and off trail run at Alafia State Park near Tampa. I am now training for a 31 mile trail run in October.
For me I find that exercise simply makes me feel better. Whatever the scientific rationale, i.e. release of endorphins, production of dopamine, etc. I can “lose myself” in exercise and for some brief period be liberated from my Parkinson’s . I find it particularly helpful (and probably safer) to exercise with someone. To me the companionship and chatter “side tracks” my brain and permits me to enjoy a wider range of motion. It’s not always easy, sometimes it’s painful.
I have a constant “cramp” in my right calf and sometimes I get foot cramps, calf cramps and sore shins while running and after. But I ice, get massage and take my medication. I feel EXTREMELY fortunate with the slow progression of my Parkinson’s symptoms and believe strongly that this is, very large measure, a result of my insistence on continuing some form of strenuous exercise. I firmly believe that exercise makes my non-exercise time more productive and enjoyable. I plan to keep exercising in whatever form I can for a long as I can.
Now, back to the Escape.
The ferry took us out past and around Alcatraz Island, aligned with the mainland and stopped. We jumped three at a time from both sides of the ferry into 58 degree water, then qued-up behind a line of kayaks for a mass start. With the explosion of a cannon we were off on a 1 and ½ mile swim to San Francisco We started on a slack tide with the knowledge that we would pick-up an ebb tide as we neared shore. Therefore it was important to site on a landmark significantly left of the public beach/boat basin where we were headed.
The water was only a mild chop and sighting wasn’t too difficult but we had to raise our heads straight up to sight which not only slows you down but after a while causes lower back pain. But I felt good and made it to the beach with the slower swimmers. (some swimmers misjudged their entry and were swept past the opening in the breakwater only to be picked-up by kayaks and brought back to the opening to be able to swim into the beach, Usually such assistance would result in disqualificaiton but in this race, for safety purposed, no penalty was assessed).
By the way, on the swim we were accompanied by a fire boat shooting its water canons skyward. I thought what a nice send-off. In later photos I noticed that the boat had accompanied us across the bay. Later I was told that, oh yes, that’s a measure to keep sharks away. Great, glad I heard that after the race. There is one of the world’s largest concentrations of great white sharks in the ocean a few miles from San Francisco but because the salinity of the bay is lower that that of the ocean they cannot survive in the bay (or so we were told).
The First Run
At the beach we changed out of our wetsuits into our running gear for the four mile run to our bikes. When I got our of my wet suit I really got cold. It was in the 60s and windy, I could barely get my shoes on. But off on the first run I went. It was a beautiful run along the bay front through parts of the old Presidio past Cissy Field and then, after about three miles, we left the pavement onto a trail and the last mile was up a steep hill.
Once to the bikes we changed our shoes donned our helmets and went off on a four loop 16 mile bike ride. Unfortunately for us Florida “flatlanders” there was one mile long, curvy, steep hill that was, to say the least, “difficult”. (I used other adjectives at the time).
The Second Run
When we racked our bikes we changed back into our running shoes for the second run a three mile trail run down to Baker beach, along the beach to the turn-around then back along the beach and up 100+ sand steps to the trail returning to the finish line.
The FINISH. There is no simply feeling like it. My friend who had finished quite a bit before me was there waiting for me.
There is a man named Davis Phinney. Davis was one of the best bicycle racers the US has ever produced and was the first American to win a stage of the famous Tour de France bike race. At age 46 Davis was diagnosed with early onset Parkinson’s Disease. He has been a real inspiration to me and I quote from him:
Over time, I have come to understand that victory-that elusive electric moment of triumph-is not exclusive to those who cross the finish line first.
The End—-No Just the Beginning
Every day I tell myself Get Out The Door. It doesn’t matter what, where, how long, how slow but every day Get Out The Door.
Attached are a few photos from the Escape
Parkinson’s: “No Match for a Dream”
It begins insidiously.
One day, a couple of months before age 60, you begin limping. No visible or immediately fathomable reason…but inevitably it becomes more pronounced as you ignore it, trying to continue with life. Five years later, you awaken one day – no prior warning; limping doesn’t suggest what comes next – with a terrible weakness in your legs. It disappears briefly, then returns – permanently, a foreign intruder called Parkinson’s. Welcome to being a statistic.
I’d been healthy as a horse all my life. As an adult, I’d had only two sick days during an entire 20-year career as a news-paper reporter and editor. Why did my brain suddenly stop producing gunk called neurotransmitters to help send nerve impulses down my nerve fibers to my legs? Who the hell knows? (No one, actually.) But there’s no out-side enemy to strike out at. It’s one of the horrors of growing old (something I fervently deny in myself!): your own body beginning to betray you. As it progresses, other horrors appear. A Parkinson’s news-letter poses a nightmare list of symptoms/effects that cannot beset me. That cannot happen to me! I can’t bear even to think such things!
It grows more difficult – eventually impossible – to ride a bicycle. With my legs so restricted, I wouldn’t trust myself in a car, trying to brake quickly in an emergency. Getting off a chair or the toilet, or walking downstairs to check mail, become major agonies, major battles. As my world constricts, my community – Merritt Island – recedes beyond my personal reach. I need appointments with public transport agencies up to a week in advance even to visit 7-11 to purchase postage stamps. Publix, the library, McDonald’s, and others…? Forget it. In fall, 2005 and 2006, I flew to Sacramento, Calif. – my longtime former home place – for special visits, and urgently wanted to make that an annual pilgrimage. With my legs as they were in 2007 and 2008, I didn’t dare try. Once there, you must be able to function – and climbing the steps of a football stadium sans handrails, for one, was beyond me.
This was the first time in my life any medical condition had ever prevented me from doing something I genuinely wanted to do. Along with the ultimate nightmare vision of losing my in-dependence, it was devastating . . . . horrifying . . . . soul-crushing.
The presence of my home-visit medical team – virtually all of them beautiful women – from the VA Clinic in Viera (Brevard County) was tremendously comforting during this period. Their radiance and faith in me made the nightmare bearable. Aided also by my Tampa VA neurology team, I’ve recovered sufficiently from Parkinson’s that my home-visit team calls me a “poster child” for fighting the disease, and has graduated me as independent from further need for home care. My own contribution: I have an enormous fighting spirit, a fire raging inside me that defies all life’s adversities, enabling me to prevail over them to whatever extent I do. I’ve reflected endlessly, “Jerry, if you ever lose the fire, you’re finished.” Parkinson’s may slow me down, but I’ve sworn it will never defeat me.
The fire will ensure that. Also, as one before me, I have a dream that sustains me. I grew up, since age nine, deliriously loving the notion of human space exploration – not only its technical aspects, but also its theoretical foundations: the spirit, ethic, and – if you please – the theology of the entire vision of reaching the moon, the planets . . . . and the stars. I grew up believing we could do it, knowing we could do it, knowing we would do it, knowing we had to do it, because in the going and the doing lay our greatest hope, our grandest promise, and our most redeeming self-realization . . . . the greatest dream, the greatest wonder, the greatest glory, the greatest adventure, the greatest destiny the human race will ever know.
Covering space became my professional specialty as a journalist, including writing of manned lunar missions and the unmanned Viking life-search missions that soft-landed on Mars. Now the dream is in motion anew. Between 2018-2020 – after 46-48 years of stewing on the ground and twirling around in Earth orbit – Americans will return to the moon to stay . . . . to fashion a semi-permanent manned lunar station there. Then, in February, 2031, Americans will embark on a 2 1/2 -year expedition to place mankind on Mars. And I will not be denied, nor excluded from, that great dream of my life. I have too much yet to do to see everything I’ve lived for held hostage to some fool failure of a few brain cells. On launch day, I intend to be there, alive, on my feet, active, and squarely in the center of it all.
When rocket fire again rages in the sky – when man finally claws aloft atop a pillar of fire from the white sands of Brevard County, Florida, to walk the shores of Mars, to bring “The Martian Chronicles” to life, to follow the legacy of gallant Viking – I will be there, in my personal appointment with destiny, to witness it, to share in it, to be part of it, to help resume the endless journey outward…and to tell the story of man and Mars and an epic, immortal dream.
And no disease on this Earth will stop me.
- Jerry Lipman