Patient Stories

Ed Tomezsko: Looking For A Miracle

Ed and Jean Tomezsko share more than most married couples….they both have PN. Ed can trace his back to about 1985 while on a business trip to Colorado. Hiking in the mountains and hopping from rock to rock, Ed noticed an unusual balance issue – wobbling as he crossed a stream on the rocks. Feeling uncomfortable, he continued over the stream. Over the next several years, Ed described the foot sensation to his internist as having to “walk on wet sponges”. The doctor indicated it was probably a slow developing neuropathy and to “keep on exercising” which he does regularly.

Between 1985 and 2002, Ed had multiple joint replacements due to arthritis from an old college injury: both knees, both hips. He recovered fully, but suffered a stroke in 2003. In 2009, he underwent shoulder replacement surgery. In 2010, he began seeing Dr. Ahmet Höke, Professor of Neurology and PN expert at Johns Hopkins University. By this time, Ed’s ability to walk and keep balanced was a challenge.

Jean first noticed tingling in her big toe around 1996, after she had been line dancing. Jean has a mild idiopathic PN that has spread through both feet, extending half way up her legs; it is in her hands and half way up her arms. Her symptoms are tingling with a feeling of her feet being bound with straps. When she was diagnosed, the doctor said she had a slow progressing PN and eventually she would need braces to walk. A year later her symptoms had not progressed and she remains stable today. Her doctor guesses her PN may be the result of a viral infection.

Both Tomezsko’s maintain a three-times-a-week exercise regimen. Ed works out to maintain muscle strength and balance; Jean adds an exercise bike so she can avoid pressure and discomfort from a sole treadmill regimen, as recommend by Dr. Höke. Ed relies on his “not giving up” attitude and his hope that a drug trial shows up soon. “I am an optimist by nature. The challenges are walking easily and comfortably – not easy to do, I now use a cane. As Dr. Höke says, I feel with my eyes.”

Today, Jean and Ed continue to travel extensively even with the challenges of living with Peripheral Neuropathy. As Jean reflects, “To be honest, I am hardly aware that I have PN because it is so mild. However, Ed’s progressive PN affects his ability to walk and move so profoundly that I am very aware of his struggles and the fear of him falling. So far, that has not taken place because of Ed’s awareness of his own limitations and commitment to exercise. Seeing the courage of others with disabilities, seeing the courage of my husband and receiving the help of others helps us cope. I tell our 4 daughters he is the most courageous person I have ever met. ”

Ed concludes, “FPN keeps me aware of progress and hopeful for a drug trial. They referred us to Dr. Höke who is encouraging but a cure is not probable. He has clearly explained the situation and now I understand – I will not die because of this disease, but I will die with it. Because of this, we see FPN as worthy of our financial support. Some say that I am looking for a miracle cure, maybe I am. I’ll take anything I can get.”

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