True Stories about Living with Charcot-Marie-Tooth (CMT) And Other Relevant, but Unrelated Tales
Yohan is now in Graduate school in Claremont, CA. He is WALKING on his own 2 feet! In fact, he’s walking A LOT!! Finding his way around the first day of classes was physically and mentally exhausting, and when he looked at his Fitbit at the end of the day, he had walked right around […]
Read More
CMT BOOTCAMP 2017 It’s a rigorous agenda; and certainly not for the faint of heart. Some end up here willingly, and others just happen to land here unknowingly, without a means to escape. Yohan, a victim of the latter scenario, is counting down the days of this grueling summer when he flies free into the […]
Read More
A Shout Out To Our Sponsors and Supporters Year after year, our sponsors generously support the Cycle 4 CMT with silent auction items as well as donations of money, time and service. A big, heartfelt thank you to all our generous sponsors, without whom the Cycle 4 CMT would not be possible. As […]
Read More
Same foot. Same surgeon. Similar surgery. Different results!!!!!! The recovery experience, so far, has been nothing, and I mean nothing like the first surgery in June of 2016, which is the best news ever. And this is how I’m feeling about that: We took preemptive measures: The anesthesiologist beefed up the nerve block so it […]
Read More
UPDATE! Yohan had his second 7-hour surgery ( a redo of his left foot) on Wednesday, March 29 at Cedars-Sinai, in LA with Dr. Glenn Pfeffer. As you may have guessed, his first surgery was not successful. We will probably never really know why, but apparently, some of Yohan’s muscles in his lower leg were […]
Read More
Second Surgery, Same Foot I started writing this post last night, as a way of getting my feelings out and on “paper.” But, the more I wrote, the worse I felt. I shut down my computer and used my “call a friend” coupon. When feeling blah, I usually hide in a shell, stick my head […]
Read More
Reality is not always what it appears to be….. Wishing she had his life….. But, once inside his head, a different world reveals itself….
Read More
Yohan’s Foot Surgery #19 I hear voices. Eavesdropping, as if I were an innocent bystander, I witness the back and forth volley of words, arguments, and reasoning. Often, I put a harsh stop to the banter, for fear of losing too many precious minutes to internal disputes and emotionally draining debates. Trying to […]
Read More
Good Friends are Hard to Find: CMT feet, Cheetah legs & Time travel It was in the fall of 9th grade, and Yohan had just twisted his ankle, yet again. It was a bad sprain, nothing a couple weeks of icing and crutches wouldn’t cure. But, a bum ankle was just the tip of the […]
Read More
Yohan’s Foot Surgery – #17 6 months later, he is still crutching around the house. Every time Yohan attempts to walk on the surgically repaired foot, he develops open sores and blisters on the ball of his foot. We were hopeful that the custom-made orthotic would shift his weight to a better, more functional position. […]
Read More
Yohan’s Foot Surgery- #16 Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”. If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the […]
Read More
Yohan’s Foot Surgery #15: Put your “Breast” Foot Forward! What else could possibly go wrong? After the pressure sore on the bottom of Yohan’s foot had more or less healed, his big left toe got infected. At this point, he was finally in a plastic brace instead of a big, bulky walking boot. At […]
Read More