“No, but it’s something you might have to live with the rest of your life.”

That’s what the Ear, Nose and Throat Doctor told me when I asked if I should be concerned.  The next step, he said, was to see a Neurologist.

Wow…a lot has happened in the last year since then.  I’ve gone/ we’ve gone through a ton of emotions since that day.  Some good, some bad…in the end I have to believe it can always be worse.  When it first happened, everyone asked, what can I do to help?  Bring Dinner? Watch the kids?  Help out with the yard work?  (Yes, to all that by the way!)

It all started with little twitching in my arm, I really didn’t notice it until I lay down to go to bed, or was in a meeting and daydreaming.  While on vacation last summer (‘05) with the whole Winovich Clan - 19 of us now - I was talking funny, not all the time but some of the time.  My over reactive wife, mother and sister in-laws all said “you need to go see a doctor right when we get back to Cleveland”.  I did.  That’s when I was referred to Dr. Levin @ the Cleveland Clinic.  When we first met I could sense the concern on his face.  I knew and he knew that I had something that I didn’t want.

Fast forward 6 months and a hundred tests later, I was told that I should get a second opinion with the ALS doctor at the clinic, Dr. Erik Pioro.

When I met with Dr. Pioro and he told me that I had ALS, it really didn’t come as a shock to me.  I knew I had the classic symptoms and I had really already come to the realization of what he was going to tell me.  There were a few things I didn’t know.  Only 30,000 people in the United States have ALS at one time.  That number has remained relatively unchanged for years.  They don’t know; who, what, where, when, or how it strikes.  So nothing I have done, could have done, or didn’t do, caused me to get ALS.  One of the difficult things about ALS is that it’s rare, remember only 30,000 people have it.  Therefore, it’s difficult to get funding to do the research to find a cause/cure.

We have to change that.

Dr. Pioro wakes up every morning and goes to the lab looking for that one thing that might link all the missing pieces together.  I asked him when we might find a cure, he said maybe tomorrow.  Maybe never.  The really strange thing is, I have three close friends that have lost a relative to the disease.

How lucky are we to have the Cleveland Clinic twenty minutes from most of our doorsteps.  The number four-rated Neurosciences Department in the country is here.  On the other hand, my doctor has to borrow a microscope from another department to do his research?

Because of this my friends and family decided to start a foundation.  This idea has exploded into:

The Bright Side of Road Foundation

Remember, whatever you are going through could always be worse – always look on the bright side.

Forever Grateful,

Barry Winovich