Stories

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The Unwanted Visitor

Diagnosed at 46

"I'm sorry. You have Parkinson's Disease."

I stood in the parking lot, the receipt flapping in my trembling hand, completely stunned by the words I had just heard. At least my neurologist had the courtesy of saying, "I'm sorry" before delivering the news. Still, it didn't seem to lesson the blow any. I felt like someone had reached into my chest and squeezed all the air out of my lungs.

My personal PD story is unique, full of weird circumstances and irony. (But then again, whose PD story isn't?) I was officially diagnosed on April 4, 2006 (4/4/06) at the age of 46. I found the "numerical coincidence" to be a little disconcerting. (As an ex ice hockey player, we all tend to be a little on the superstitious side.) It was also National Parkinson's Awareness month, and believe me, I was aware! Prior to my diagnosis, I also had encounters with the two most famous faces of our disease, Michael J. Fox and Muhammad Ali.

Like most PD patients, as I looked back at the years prior to my diagnosis, I realized my symptoms started well before I knew that my brain was being invaded by an unwanted and uninvited visitor. The signs were all there, glowing like a brightly lit neon sign tattooed right across my forehead. I just didn't see it. And really, why would I? I was relatively young and in great shape physically, so there was certainly no reason to think I had something like PD. After all, it's an old person's disease, right? Wrong.

I ended up going to the doctor after years of stiffness (rigidity), slower walking (bradykinesia), problems with my writing (micrographia), lack of arm swing on my right side when walking, and problems with my fine motor skills. I had severe pain (dystonia) between my shoulder blades and into the base of my neck. I was having problems holding pens and gripping my silverware when eating. Simply trying to get 3 crackers out of a box was becoming a huge ordeal. I even had some typical non-motor symptoms common to PD patients, like loss of smell, depression, and sleep disturbances.

After blood tests to rule out other possibilities, two neurologists, one PD specialist, a trip to the Muhammad Ali Parkinson Research Center in Phoenix, Arizona, and a two-week trial dose of Sinemet, the diagnosis was confirmed. Four times. Stunned doesn't even begin to describe how I felt. I wanted all the doctors to be wrong and say, "Sorry Todd, we made a mistake." But reality slapped me squarely across the face. Hard.

The challenges were just beginning. How do you tell someone you love that you've been diagnosed with a progressive neurodegenerative disease for which there is no cure? Sharing the news with my wife was quite possibly the hardest thing I've ever had to do. I felt a pain like nothing I've ever experienced before. And I can't even begin to imagine what was going through her mind as I delivered the devastating news.

I've always been a "Type A" personality. If I decide I'm going from "point A" to "point B," you best get out of my way, because I'll get there come hell or high water. And I almost always have multiple projects going on. In the old story of the rabbit and the tortoise, I was the rabbit. Zipping around as fast as I could, getting my hands into anything and everything. It wasn't about winning, but enjoying the adventure. Well, I do like to win whenever possible!

But now with PD, I've come to realize that I have to be the tortoise. Slow and steady may indeed win the race, but when you're used to the rabbit lifestyle, transitioning to the tortoise isn't easy by any means. PD, however, has dictated the change and all I can do is go along. I wasn't really given a choice in the matter.

I decided to research and read anything and everything about PD that I could get my hands on. Well, I did read things that scared me. Let's be honest, it's scary to have a disease in which you can clearly see your future and know that there is nothing anyone can (currently) do to stop it. It's like being in a car going down a steep hill and realizing the brakes don't work. You can steer all you want but the crash is unavoidable. Maybe just being in denial would be the better option. But education is power, so I continued to learn as much as I could.

The biggest step was meeting others with PD, those who have already traveled down the path that I was about to go down. And yes, some were far more progressed than I. But something unexpected happened. Instead of being frightened, I felt comforted. I felt accepted. I knew they understood me, what I was going through, and what I was about to go through. I felt like I was part of a loving, caring family. I felt safe. Meeting my fellow PD patients was the best thing I could have done. Isolation is a killer, comaraderie builds strength.

I'm more inspired than ever. Even though I met people who lost careers and had to dramatically alter their lifestyles, I discovered many who found new joys and talents they never knew existed. It's as if they were butterflies just waiting to be released from their cocoons. From their experiences, I've gained a perspective on life that has forever altered how I look at myself, and the world around me. PD has changed me into the tortoise and has allowed me to see all the small moments in life that are so incredibly rewarding and powerful. Moments that as the rabbit, I would have missed.

Currently, I'm a motivational and inspirational speaker who has traveled all over the country talking about living with PD. I've started a very successful young-onset group in my area. And I've decided that I'm not going to "live with" PD but instead, I'm going to "fight" it every step of the way through knowledge, diet, exercise, and most importantly, attitude. While PD may have taken away some parts of my life, it's also given me a new purpose, focus, and direction, and that's not a bad thing. Being the tortoise does indeed have its advantages.

-Todd Bischoff is a PD patient who lives in Ontario, California with his wife Joyce and their dog Kaylee. Todd is an ex-athlete, actor, radio personality, voice-over artist, and Child Life Specialist who now is a motivational and inspirational speaker. Todd can be reached at Todd@ToddBischoff.com and through his website at www.ToddBischoff.com.

8 Comments

great work Todd. have your symptoms progressed and if so, did it come one fast or slow or with any new symptoms?
I was diagnosed 3 years ago with very similar symptoms to yours.... I have yet to experience typical tremors, but have had a few powerful arm shakes after streaching in the morning..I know we're all unique , but was interested in the simalarity of our symptoms. have a blessed day!

gary, Jun 30, 2011

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I'VE HAD P.D. FOR, AT LEAST 10 YEARS. MY GREATEST "HANDICAP" IS NOT THE DISEASE BUT THE ABILITY
TO AFFORD SUPPORTIVE LIVING AND PRESCRIPTIONS. THEY SAY I MAKE TO MUCH MONEY...AFTER PAYING MY HOUSING, THAT PROVIDES ME WITH THE ADDITIONAL ASSISTANCE, TO STAY SAFE, I HAVE JUST ENOUGH TO PAY MY PRESCRIP[TION AND MEDICAL INSURANCE, BUT NOT ENOUGH TO PAY FOR MEDS WHILE IN THE DONUT HOLE!!!!! READING YOUR STORY, TODD, HELPED ME AND WILL LET ME REST BETTER TOHIGHT.

shirley, Aug 10, 2012

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Hi Todd I too was devastated by the news two years ago that I had PD. What I wanted to ask you was about your neck and shoulder pain. Lately, my neck and shoulder pain have been unbearable (severe headaches as well). No one in my support group shares this problem. What did you do for it? I have tried heat and stretching, and my neurologist has increased my sinemet but I was wondering if I am going to have to live with this pain for the rest of my life, Thanks so much for listening,

Deb, Jan 8, 2013

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I've had shoulder pain for years, Doctors said pain not from PD,I started hearing about coconut oil from another person with late stage Parkinson's, it helped him a lot, well I'm on coconut oil now, the benefits are good for me, shoulder pain gone,speech,thinking clearer,anyone on this oil will benefit from it.

miles , Apr 8, 2013

Todd, I also am sorry you have PD. Looking back I see parallels. In my case, I may have had my PD masked by Stenosis which caused me to change from being right-handed to becoming left-handed. The other infirmities and pain, I blamed on arthritis. Following my PD diagnosis a neck operation changed me back to being a rightie. My family Dr. is of the old school(doesn't believe exercise helps). The neurology folks prescribe exo-therapy. This is a lonesome disease. Caregivers and patients find less & less Social interaction. Find an active support group and stick with it. 74 yrs young

Paul Vaughn, Apr 11, 2013

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I am a nurse and have a Parkinsons patient. Always looking for a natural product to supplement the meds. Can someone tell me more about the coconut oil? He denies any pain, but could use clearer speech and thinking. Thanks so much for your time. Peace and all good to you who have PD.

Judi Brennick, Feb 27, 2014

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Dear Judi, I have tried coconout oil and 'it works'. It is a natural product with no side effects. Best result being a spoonful before lunch & dinner with a multivitamin tablet, with time you will be able to judge the quantity.

No clinic will prescribe or recommend coconut oil citing lack of clinical evidence, real reason being loss of business.

subhra gupta, May 5, 2014

There is a man with parkinsons disease age 74 years old he gave up the drugs from the doctors and is doing great taking coconut oil each day

Mike uk, Apr 21, 2014

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