Be sure your doctor is a movement disorder specialist/neurologist (MDS).Even if your doctor is a neurologist, this does not mean that he/she has the experience or education with movement disorders that will enable them to provide the specific care you need. ...
Live in the moment Learn from the past, plan for tomorrow, but live for today. Don’t put off those activities that you have talked about doing “some day”. Make time for fun. Communicate It is crucial to keep the lines of communication open. Tell each other ...
I walked out of the doctor’s office after a 7 minute exam with “you have Parkinson’s Disease, here’s some meds, brochure, call me with questions and we’ll see you in 6 months” still ringing in my ears. We call him, Dr. #1. Stunned and not quite understanding the big picture yet, nor its implications, I cratered.
It all began when I noticed that my fine motor skills, brushing my teeth, shaving, rolling up a blue print were not working very well. My right hand pinky had a discernible tremor and my wife had noticed an expressionless pawl on my usually smiling Irish face. After going to a motion disorder neurologist (Dr. #2) for confirmation we started researching everything that we could find about PD. Within a matter of days, my wife, Martha had a 3 ft pile of articles on each corner of my desk. One of Martha’s incredible qualities is her tenacious capability of attacking a situation head on, weed through it all and produce results.
Upon being given the diagnosis your brain goes into overdrive, dwelling on your PD 24/7. It is awful. You are constantly thinking about what is going to happen, how bad it is going to be, how long will I live, will I look like him or her etc., etc. You tear yourself up for what seems eons. Mental gyrations the likes of which you have never seen before nor care to explore - surface. The unknown is what gets you in trouble. I like to call PD the “Designer Disease”. PD manifests itself with different symptoms for everyone. Mine was a slight tremor in my right pinky, fine motor skills dissipating, and my voice started to grow softer.
I am now a 9- year veteran. Eventually I took on the Beast by putting him in the corner of the room and mentally shrinking him down from the size of a jumbo elephant to the size of a field mouse. When I have a challenging day it means the Elephant has passed gas. It is my job to dissipate the gas. By doing so, I control the Beast rearing its ugly head. I have taken back control of my life and have come back from the abyss. The place where everyone goes when diagnosed with an incurable disease. As I like to say you go to the window ledge and you decide to either jump or come back in and fight.
One of the big things missing was my sense of humor. It had checked out. As those that know me, I am always joking. As I realized I needed to get a new mind set, I turned back to humor to help pave the way. I made a point of listening to XM radio daily because it has a smorgasbord of stations devoted to comedy.
I believe that we aren’t given more than we can handle. If I can help folks to stand up taller and feel the sun on their face, then we all see the sun a little bit warmer and closer every time. People who believe in themselves, start getting a better outlook on life, are more positive and believe in themselves.
Don’t let yourself become a victim to the Beast. Many have thrown in the towel or never had a towel to throw in, which is even worse. Hope is key. If I could do one thing, that is to spread a little hope around and get people to believe in themselves and that they can change their outlook. Then we have beaten the Beast for another day.
I finally pulled myself together after discovering that I am what defines me not the PD. You come to an epiphany and you either continue on a path that gradually overwhelms you or you do something about it. So I started finding different therapies that could help me wrestle the Elephant. In my quest to reinvent myself I didn’t limit myself to just Western medicine and the “approved” forms of help. I started looking into the alternative therapies and stumbled upon an exercise program that was discovered while riding across Iowa. Dr. Jay Alberts of the Cleveland Clinic had just released his results of a forced exercise study that was on a stationary tandem. The PD symptoms were reduced by 35%. Since I was a road biker, I contacted Dr. Alberts and I was off to ride myself out of the abyss. By this time I had gotten a hold of my mental degradation and actually reformed my internal sliding and got a better and brighter outlook on my life.
I came to realize that you can actually be in control of the Elephant. My physical and mental well being had improved so much from the biking program and other therapies that I decided to join Dr. Albert’s biking group called “Pedaling For Parkinsons” which rides across Iowa every summer in the RAGBRAI to bring awareness to PD. The irony about the Pedaling For Parkinsons program is that you lose weight and get in shape.
Physically and mentally I was doing well. Things were improving all across the board. Towards the end of last year we got a call from a good friend in Seattle who has PD herself. A group of MS folks were going to climb Mt. Kilimanjaro in Tanzania and a PD neurologist friend had gotten some spaces for some PD’s. They were all going, would we be interested? This was huge! The group was up for a large challenge with no guarantees. It would be the trip of a lifetime. Climbing Mt. Kilimanjaro all 19,340 ft or 5895 in metric. The trip was called “Empowerment Through Adventure” led by a Wisconsin woman who has MS herself. She assembled the group of 28, MS/PD folks and their healthy companion climbers. This group defied the skeptics and the naysayers. We all flew to Tanzania (go to the equator, east side of Africa, find Lake Victoria and just SE of there is Mt. Kilimanjaro). We started at roughly 6,000 ft. eventually camping below summit at 15,500 ft. By the 6th day of hiking, in part to get acclimatized, we reached the summit, the worlds tallest, stand alone mountain, one of the 7 summits. Summiting Mt. Kilimanjaro (19,340 ft.) has been quite an adventure. We challenged ourselves physically and you too can conquer your own Kilimanjaro.
John, I am just a little tearful after reading your account. My husband has one more test to go before this diagnosis is actually confirmed. Several years ago (2004-2007) we had a PD friend living with us, and watching his slide downhill was disheartening. But he just sat back and let the disease take him; he was very passive about it. My dear husband, on the other hand, has a very positive attitude and actually buoys me up as my mind tends to wander off in the wrong direction (especially thinking of our resident PD friend). I KNOW that man was not a good model of a PD'er; we have another friend who must have been diagnosed at least 13 years ago, and his symptoms are barely noticeable (same age as we are -- 68). Right now we have a wedding coming up in a week, and time for research is limited, but I LOVE your RAGBRAI post. Doug rode RAGBRAI for about 15 years, and the only reason he hasn't gone for a couple of years is that we have a second home in Montana and he wanted to spend time with me there. AND he found it terribly difficult to get out of the sack and get his stuff on the truck by 7 AM; he is NOT a morning guy! I went with him twice, but found it wasn't entirely to my enjoyment, as I'm more of a slogger than a power rider :).
Thank you again for the encouraging post!
Loved the article, John. Your first experience was very much like mine and your journey is inspiring. My internal representation of PD was an arch of black letters spelling out PARKINSON'S that loomed overhead. I pulled the letters down to make them stepping stones but they popped back up. So I waited and watched -- they became crows that I could "shush" away - fewer and fewer returning each time. Now a robin watches over me! Much better each day.
Thank you for this wonderful post John. I hope to see or hear more about your Kili trip. I read your post to my sister who has PD in hopes of inspiring her to shrink that elephant. I think your post gave her much encouragement. Thanks again and keep climbing those mountains.
Great post John! I look forward to hearing more about your Kili trip at some point!
I too lived with the Elephant for some time...about a year in my case, as I let my label of MS consume me. My Elephant has shrunk to a field mouse size also, but I now notice an interesting phenomena. Have you ever read If You Give A Mouse A Cookie? It is a children's book about giving the mouse something and it will only make him want more. That is what happened to my mouse, when I climbed the first mountain. Here's hoping your mouse eats a dozen or more of those cookies and you keep MOVING mountains with your inspiration. Honored to know you John.