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Yohan’s Surgery #10: If You Can’t Beat ‘Em, Join ‘Em

  Due in part to the effects of his CMT, Yohan has never been particularly athletic. When he was young, he enjoyed swimming lessons, played tennis and racquetball, kayaked and camped with his dad. He even learned to ride a horse. As he got older, fatigue, sprained ankles and nerve pain became limiting factors to Read More…

Third annual Cycle 4 CMT ride August 28

Originally Published by The Citizen Cycle 4 CMT is a fundraising cycling event for individuals with CMT disease (Charcot-Marie-Tooth). CMT is a progressive neurological disease that affects 2.8 million people worldwide. It often severely impairs the use of one’s hands, arms, feet, and legs as a result of peripheral nerve damage. There is no cure Read More…

Yohan’s Surgery #9: The Journey Ahead

Thanks to 9 different procedures, over 100 stitches and 7 long hours of surgery, Yohan has a new foot underneath that cast. A foot that is straighter, more functional and completely reconstructed. And the journey has just begun. In August, he can put weight on the foot. And then there will be months of rehabilitation Read More…

Yohan’s Surgery #7: The CMT Inaccessible Home

  I hate to say it, but Yohan was right. Our house is unequivocally inaccessible. Sad thing is, I was totally and completely oblivious. Since we have no inside stairs and there are only a couple of steps leading into the house, I never thought twice about just how hard it is to get into Read More…

Yohan’s Surgery #6: Honest Pee

  Walking around with CMT can be hard enough, but when you have one foot, weighted down by a cast, off the ground entirely, and the other foot, affected by CMT (pain, high arches, weak ankles, limited or no ability to lift the foot when taking a step), getting around is like playing a game Read More…

Yohan’s Surgery #5: The Hospital Stay

  I’ve been an active volunteer for the CMTA for the past 13 years. I’ve organized CMT conferences, written articles, acted as an administrator on several Facebook groups, created a presentation to teach kids about CMT, answered Ask the Expert questions, facilitated a CMTA Branch, etc, etc, etc. I thought I was familiar with practically Read More…

Yohan’s Surgery #4: Before the Knife—the Anesthetic

  Everything is fun and games until the anesthesia wears off. The most polite Yohan I’ve ever witnessed was in the recovery room immediately following surgery. He was still under the influence of a light sedative and thanks to the nerve block that numbed his leg from the knee all the way to the toes, Read More…

Yohan’s Surgery #3: And 7 Hours Later…..

  After four hours, we started to wonder, “What is taking so long?” He was wheeled away at 7:30 a.m. and should have been done by noon, at the very latest.  A female voice called our cell phone on behalf of the surgery team several times to tell us that all was fine and to hang Read More…

Yohan’s Surgery #2: The Wait

  The worst part is the wait. Waiting for the weeks, the days, the hours, leading up to the surgery. Now there are only minutes before they bring him into  the OR for this life-altering procedure.  Dr.Pfeffer arrives smiling, wearing scrubs and a sports coat, an odd mix bridging the everyday academic with the skilled Read More…

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