Classmate Update - Peter Testan

WUHS Class of ’87,

After more than 20 years, it is always nice to hear from some of our old friends. Many have appreciated what was shared from Tony and Vicki.

Peter recently contacted me and wanted to share some successes in his life, (Sue and his daughter Emily), along with some current challenges, (being diagnosed with Charcot Marie Tooth Disease).

Hopefully the following article, written by Peter, will help us each to appreciate our own successes and support those who are dealing with “real” challenges.

Thanks for sharing Peter!


Peter writes:

I have always tried to look at things as positively as possible. Rather than looking at what I don't have, I pay attention to what I do have. My almost 5 year old daughter, is the light of my life. My proudest accomplishment.

But this past April, my positive outlook on life, and hope for a healthy and prosperous future for my daughter, Emily, was seriously challenged. I needed a wheelchair to help move me over distances that became too far to walk, painkillers like Morphine to moderate my severe pain, aggressive physical therapy to slow the progression of my disease, and help accepting that the same fate could be in store for my daughter.

I had been out of work trying in vein to rehab from two major ankle surgeries at Strong Memorial Hospital in Rochester, NY, in 2005 and 2006, and to put it simply, was getting nowhere. I was still unable to walk well and my excruciating pain was spreading. My doctors were baffled. Despite all of my hard work in physical therapy, their tests were showing my muscles to be getting weaker. In desperation they sent me to Strong's own rehab clinic, thinking a new approach would get me on the road to recovery and back to work.

I began physical therapy at Strong and within a week they halted therapy, and advised that I see a neurologist before going any further. They believed something was seriously wrong.

I saw the neurologist the following week. He took pins and inserted them into my ankles and feet The pins were an inch into my muscles and I could not feel them. He then ran electricity into my lower legs, and got little response. He knew there was a big problem and immediately diagnosed me with Peripheral Neuropathy.

Peripheral Neuropathy is caused by damage to nerves running from the spine to the arms and legs causing severe chronic pain and numbness. He thought a pinched nerve in my spine, he was seeing in an MRI, was the culprit. He sent me to a surgeon so that pressure could be taken off the nerves in question to relieve my symptoms.

As each week passed leading up to my appointment with the surgeon, the numbness in my legs was getting worse. I was also experiencing excruciating pain in my legs. I would lay in bed and feel like my legs were on fire.

The pain got so bad, I was prescribed morphine, which turned me into a zombie sleeping fourteen hours a day. Though I was miserable, I eagerly awaited my appointment with the surgeon, thinking the surgery I was being promised, would solve the whole problem

The day of the appointment with the surgeon came. I went armed with the latest MRI of my spine, supposedly showing the pinched nerve causing my decline. He spent two minutes talking with me after seeing my MRI and watched me stumble up the hallway in front of his office. He agreed I had a major problem, but felt I did not have a pinched nerve in my back. He then sent me back to my neurologist where I had started. I saw my neurologist a few days later, and believe it or not, was sent right back to the surgeon.

With me increasingly depending on a wheelchair, my Significant other, Sue, and I were completely frustrated. We saw my general practitioner in desperation, hoping for some direction. She helped us get an appointment with the Neuromuscular Center at Strong in hopes they could help me. She also said something called Charcot Marie Tooth disease could be the true cause of my problems.

Charcot Marie Tooth disease, is a Hereditary Neuropathy impacting 1 in 2,500 people in the US. The disease leads to increasing disability from severe pain along with worsening muscle weakness in the feet, legs and arms, and hands.

After a full day at Strong with the doctors at The Neuromuscular Center discussing family history, my symptoms, and additional nerve and muscular testing I was indeed diagnosed Charcot Marie Tooth Disease.

As I sat in a wheelchair hearing the diagnosis, my mind was overwhelmed with what the diagnosis could mean. A disorder with no known cure progressing further and further, worsening pain, muscle atrophy, and the unthinkable possibility that I could have passed it on to my daughter, Emily.

I wondered who might have passed the disease to me, and who else in my family might silently be dealing with its symptoms. My aunt has been battling chronic pain and fatigue for years, with at least one of her adult children seeing similar symptoms. And I remember my deceased grandfather having similar issue.

Emily, appears normal on the surface. But shows some unsettling tendencies toward having the disease including, tripping over her large feet and numbness in some parts of her body.

To learn more about my daughter's status with Charcot Marie Tooth, I will undergo genetic testing to determine if my CMT is genetically recessive or dominant. If it is dominate, I likely passed the disease onto Emily and having more children is very risky. The testing will also identify which type of the disease I have. We are battling my insurance company to get the testing paid for. The testing is extremely costly and difficult to get covered.

I have just started a new round of physical therapy to help my pain and slow the damage being done to my body. The therapy is waterbased, and has begun to help. I will have to be in physical therapy for the rest of my life.

With Sue's help, I am still able to enjoy my favorite hobby of gardening. I can do some weeding and planting. She handles the heavier work. For now, that seems to be the story of our relationship in the wake of my diagnosis. Sue increasingly does more and more out of necessity. I need Sue's help with dressing and I am clumsy and fall over on a regular basis.

Because I am on Morphine, Sue has to drive me everywhere. She is a real trooper and we love each other very much. But, there has been a strain on our relationship. Especially when you consider the impact the disease could have on any children we might have.

I am hopeful I will eventually be able to return to work. My actual prognosis is unknown at this point. Until we pinpoint the exact type of CMT I have through genetic testing, it will be hard for my life to move forward. I know the disease will not kill me, but knowing how debilitating the disease can be, without knowing more about where my case is going to end up, is scary to say the least. I cannot imagine living with this level of pain forever. Though Morphine dulls the pain, I regularly feel like my lower legs and feet are on fire. And the pain is spreading to my arms and fingers now.

There is progress being made in research on CMT, and the hope for my daughter Emily is that that there will be a cure before she faces the painful effects of the disease.

My years of radio, television, and sales experience are helping me educate people about Charcot Marie Tooth Disease. Though I was unsure about speaking out about my diagnosis at first, I was convinced that I could help people by telling my story.

Spending time with Emily and Sue allows me to forget my pain, focus on the good things in life, and forget about the uncertainty ahead.

Wow! Thanks again Peter for sharing. Feel free to leave comments for Peter either here on the class website or email him directly at petertestan@gmail.com

If anyone else has anything that they would like to share, (the birth of a child, big promotion at work, your 4th marriage, etc.), please contact Eric at ewingericr@aol.com and we will work together to post the information to this site.