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 iceberg. Chronic sprains, neuropathic pain, footwear woes were more the norm as his CMT progressed. His good friend Will, trying to make Yohan feel better, innocently came up with a solution to stop the madness. “Yohan, why don’t you just get below-the-knee amputations? I bet they could give you an awesome, high-tech pair of Cheetah Legs, and then you could run, play sports, hike….you could do it all!, ” he said as his thoughts drifted to Yohan’s first gold medal sprinting win at the Paralympics.
As crazy as this idea of artificial limbs sounded at the time, it didn’t seem so far-fetched today.
Here are the facts:
-Yohan had reconstructive foot surgery in June.
-As soon as he was given the go ahead to walk, he developed a pressure sore on the ball of his foot.
-Pressure sores are persistent and in his case, a sign that his foot mechanics are off.
-Orthotic modifications have not been helpful.
-One surgeon suggested surgically lifting the big toe bone, and straightening all the toes, while a second surgeon had a completely different perspective. They do agree on one detail: Both think another surgery is imperative to get him back on his feet. We were hesitant to get a second opinion- it often confuses the picture even more, and then the patient is left to figure out the “right” solution.
Lately, I find myself saying the “F” word ….a lot.
Why? I am angry, frustrated, scared, disappointed, and did I mention, scared? It feels as if we are rolling the dice or playing Russian roulette: One wrong move and BANG!! You are no longer walking. Maybe a classic case of negative thinking, but that’s the analogy which came to me, so I used it.
Today, I’ve had a bad case of the “shouldawouldacouldas,” otherwise known as regret or backward thinking. If only if we could just go back to May, to the joy and happiness of Yohan’s graduation day, with the knowledge we have today. Maybe the surgery would have gone differently. Maybe we would not even have had the surgery. Maybe he did not even need surgery. High? No, I am not high….a bit delusional perhaps, but not high.
I was even Googling “time travel + start-up companies+ Steven Hawkins” hoping to discover an investment opportunity to enhance the development for time machine technology. We could even launch a Time Travel app! Wouldn’t that be cool? I didn’t find what I was looking for, but I did find this interesting article: http://www.dailymail.co.uk/home/moslive/article-1269288/STEPHEN-HAWKING-How-build-time-machine.html”
Balderdash!! STOP. REWIND. The only way forward is to look ahead, not back.
If I invest in anything, it will be in Yohan’s future and the future of so many with CMT. At least in this realm, the CMTA is making tangible and reality- based progress. If you do not know about the STAR or Strategy to Accelerate Research initiative, click here: http://www.cmtausa.org/research/our-star-strategy/
We are not really ready for the cheetah leg prosthetics. Having chronic pain myself, I too fantasize about getting cool-looking prosthetic limbs. It’s tempting. I mean, who wouldn’t want to look and get around like actor, activist and athlete Aimee Mullins?:
But, both Yohan and I are kind of attached (literally and physically) to our own feet and calves, And then, of course, there is that problem of nerve pain, phantom limb pain, emotional turmoil, financial considerations, etc…..it’s a big decision, one we are seriously not considering. But Will was right, they sure are impressive. Love you Will!
Sorry to hear you are having to go down thst road of shoulda woulda coulsa. I really feel for you guys. I had to laugh though reading as when jacob was younger and didn’t want surgery he used to say he was just going to wait and get his feet cut off and get prostetics instead. Thankfully he changed his mind on this at some point. Jacobs surgery Wr feel was a success for which we are grateful . We however weren’t expecting his finger paralysis and are also glad that is mostly resolved. I think about you guys all the time and how this disease and it’s effects and surgeties are all a crap shoot with no guarantee. Time to find a cure and prevention.
Thanks Lori… your kind words and supportive thoughts are appreciated. We’ll
get thru this, maybe not in the timeframe we expected. So glad Jacob is doing well! So right… need to find a cure….. yesterday!!