What Doesn’t Kill You, May Reduce Your Quality Of Life-- Quickly

Glenn Leppo

Why Research is Needed Now to Stop the Progression of Parkinson’s Disease

Not long ago, as I approached middle age, I started feeling like I hit a wall.  It didn’t make sense to me.  At age 40 I set out on a path to be healthy at age 50, both physically and emotionally.  I knew a lot of people who burned out at 50 and I wasn’t going to be one of them.  I exercised regularly and ate a healthy diet heavy on fruits and vegetables.  I had a strong support network both at home and work. Looking from the outside everything was great – our family was all healthy, our business had recovered from the great recession and everything seemed to be going my way both personally and professionally. Still, something wasn’t right and I was determined to figure out what and fix it.

The first clue was a twitching finger when my wife and I were watching a movie.  Must be stress I figured – working lots of hours.  But the darn twitching went from “rare” to “occasional” to “most of the time” in less than six months even after I got a little better at controlling my time at work and cut out all my caffeine.  “Doc, one more thing” I said during my annual physical.  Many tests and exams later I hear from a neurologist the words that rocked my world “You have Parkinson’s Disease”.

OK, I can deal with this like I deal with all challenges – head on.  After all, what doesn’t kill you, only makes you stronger, right? 

But what about diseases like Parkinson’s that don’t kill you? They may not directly cause death, but they reduce your quality of life – rapidly.

In case you haven’t heard the numbers: the annual cost of Parkinson’s to American society exceeds $14.4 billion; 60,000 people each year will be diagnosed with it; 1 million Americans currently have it; the number of people with it will double in the next 25 years.  The estimates indicate slowing progression rates by 20% would result in $75,000 per patient of economic benefit.  Multiply that by 1 million people and the result is a $75 billion dollar savings for just a 20% slowing of the disease.  Stop it entirely and the estimated savings climbs to over $400 billion.  If we had more funding for research and participation in clinical trials…we could stop the progression of “it.” 

So, what is “it?” And what does it mean to have a neurodegenerative disease, sometimes called a disease of subtraction?

“It” could really be thought of as an “inability to”, of which all of us suffering from Parkinson’s immediately encounter.

Imagine losing your sense of smell. For most, that means losing much of your ability to taste, for many, that means an involuntary loss of weight. For me, that means the inability to smell my wife’s delicious cooking, to smell her scent.  That started almost 10 years ago – an early warning sign that I attributed to the pool chlorine from my swimming.

Imagine losing your facial expressions, to have a blank stare during the most wonderful occasions in your life. At 52, I have a lifetime of moments to still experience, the thought of not being able to share my joy with those I love, scares me. The “inability to,” worries me.

Imaging looking forward to a life of constant tremors or uncontrollable shaking; difficulty walking, sleeping, talking; imagine constant dizziness, constipation, trouble swallowing, the list goes on forever.

The best treatment available for Parkinson’s symptoms was developed over 40 years ago. It does nothing to slow the progression and ultimately leads to debilitating side effects. We’re not talking about needing research to find a cure, we simply need research to develop treatments that prevent the disease from getting worse.

We need to provide more funding for researchers who are advancing science to slow the progression of, and ultimately cure Parkinson’s, as this work may also help with other diseases like Alzheimer’s. 

We need those in the public and private sectors to support, to advocate and to collaborate on increased investment in biomedical research.

We need strong federal, state and civic support of funding, policies and programs.

We need health care professionals, researchers and care givers; business leaders and community leaders; all to continue to do the work needed to improve the quality of life for people living with Parkinson's.

We need you to work together and share knowledge and strategize to find ways to stop the progression of Parkinson’s disease. We need you to Take Control.

To get involved and find out more, join us at Take Control: A Symposium to Advance Research on Parkinson’s Disease.

Glenn Leppo was diagnosed with Parkinson’s disease almost four years ago while in his late 40s. Leppo is CEO of Leppo Group, Inc., an equipment rental and sales company.

Click here to view a video featuring Glenn's story from Northeast Ohio Medical University (NEOMED).

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Without research, there is no hope.
The Honorable Paul G. Rogers