This article is written by my friend Frank Cervone. We grew up in Westbury together and graduated from WT Clarke HS in 1980. Frank Cervone is a Republican Councilman from the State of Ohio now. Recently, Frank has had some serious health challenges and they have been covered by Ohio press. I have asked Frank to tell his story to our readers. This is the first article of what will hopefully be a series. My goal is to make you all aware of the disease that Frank is currently suffering from and to hopefully, raise money for its treatment and to fund a cure. (Frank DeMartini)
Everyone has dates in their lives that they will always remember other than the obvious birthdays and anniversaries. There are three dates that will always stand out for me: December 2, 2003, October 13, 2008, and April 28, 2010.
December 2, 2003, the day I was sworn in as Councilman for the City of Fairborn, Ohio. Ohio is primarily a Republican state, and I was excited to become a cog in the big political wheel. I was going to make a difference in this little town. I was a New Yorker in a small Midwestern town, and I settled in to do the best job I could to make this sleepy town’s mark on the world.
Over the years, I have found that it takes more to steer your community than raising your right hand and swearing to uphold the Constitution. It takes a lot of involvement in both the events and the lives of your community. I am a hands-on person. In addition to the various organizations you’re expected to be a part of as en elected official, I also firmly believe I was elected to represent the people of my community, so I make it my business to walk the neighborhoods, knocking on doors and speaking with those that pay my salary. I have found that citizens are much more likely to tell you what’s on their mind sitting on their front porch than they are standing at a podium in front of cameras and a bunch of people in suits.
In addition to initiating the neighborhood walks, I have organized an annual clean-up of the City. A group of concerned citizens and I get out early on Saturday mornings in the spring and clear the trash that has collected during the winter in the entranceways to our community.
I like to be out in my community and you may find me anywhere. Lots of ideas and information can be shared at the local grocery store and my citizens know that it is not an interruption of my time to stop me wherever they see me to let me know what’s on their mind.
Until recently, I served as the Vice-President of the Greene County Regional Planning and Coordinating Commission. The GCRPCC is an entity of 21 Cities, Towns and Villages that oversee the development of the County. I have proudly served as their Vice-President for the past four years.
October 13, 2008, the second of my most memorable dates. That would be the day that would change life as I know it. While getting ready for work in my full-time job as a Tractor-Trailer repossessor, I became ill. My wife found me in the hall, partially conscious with symptoms resembling a stroke.
Over the next year and a half, I frequented Kettering Medical Center. I suffered bouts of light-headedness, dizziness and unexplained weight loss. I experienced every cardiac test known to man: EKG, blood flow, blood volume, tilt table, stress test. You name it, I had it. Anyone that knows me knows testing has never been my strong suit. So, since I didn’t pass those tests either, I was rewarded with the placement of a Pacemaker.
The pacemaker didn’t stop or even slow down my symptoms, so they started new tests: MRI’s, cat scans, x-rays. During one of these tests, they came across my thymus gland. Now everyone has one of these, they create your immune system from the time of birth, and as you mature, it shrinks and is supposed to be barely, if visible at all. Mine was very large, so that meant either I hadn’t matured, which wasn’t quite a possibility at age 47, unless you take my friends word for it, or it may be malfunctioning and attacking my body. Since they couldn’t do much with the maturity option, they opted to remove it. Now, that sounds relatively easy to remove a gland. Well, not this one. This particular body part lies against the front of your heart, so the only way to access to it is through your chest. Thus, I became a member of the zipper club.
Well, still no change in symptoms, so time to call in the big guns; the Cleveland Clinic. With new physicians come new tests. Epilepsy studies, spinal taps, radioactive injections, and blood work; lots of blood work. Can a person survive with the lab taking that much blood?
April 28, 2010, This is the last date that has made a major change in my life: April 28, 2010. You know you’re about to have a bad day when the doctor asks if you can wait a few minutes until they see their last patient because they need to talk to you. While waiting for them to come back, you talk to your wife about who knows what as your mind is racing to every disease you’ve ever heard of and trying to remember the symptoms to see if they fit what you feel. Then the door opens and the doctor walks in.
There must be a class in medical school titled: “How to Tell a Patient They are Going to Die.” It goes like this. Pull your stool up real close, lean forward, and speak in four word sentences.
“It’s Multiple System Atrophy.”
“I am so sorry.”
“Frank, you have MSA.”
“There is no treatment.”
Long pause…. “There is no cure.”
“I am so sorry.”
Wait!! Back up. What did you say? Multiple System Atrophy? MSA? What the hell is MSA? Dying? From something I’ve never even heard of? Dying? I’m 48 years old! There must be a mistake.
“I am so sorry.”
Multiple system atrophy (MSA) is a rare neurological disorder that impairs the body’s involuntary (autonomic) functions. Formerly called Shy-Drager syndrome,the condition shares many Parkinson’s disease-like symptoms such as:
■Extreme low blood pressure – The primary sign of multiple system atrophy is orthostatic hypotension, a form of low blood pressure that causes dizziness or lightheadedness, or even fainting, when standing up from sitting or lying down.
■Extreme high blood pressure – Possible dangerously high blood pressure levels while lying down.
■In men, impotence and loss of libido
■Loss of bladder or bowel control
■Rigid muscles and difficulty bending your arms and legs
■Impairment of movement and coordination (unsteady gait, loss of balance)
■A reduction in the production of perspiration, tears and saliva
■Impaired control of body temperature, often causing cold hands or feet as well as heat intolerance
■Slurred speech; slow or low-volume speech
■Impaired ability to swallow
■Difficulty controlling emotions
■Agitated sleep due to “acting out” one’s dreams
■Abnormal breathing at night
April 28, 2010. The date that changed my life, forever. I’m still a Councilman. I’m still a Republican. But now I’m a voice and advocate for MSA patients and caregivers. I have Multiple System Atrophy.
© 2011 by Frank Cervone – Used with permission