Month: September 2017

Seeing is Believing

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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 5 miles – a record-breaking feat! And, he has much less pain, too, which was an unexpected benefit of the surgeries.

Thanks to Dr. Glenn Pfeffer’s relentless striving for perfection, he never, ever let us down. He remained by our side every “step” of the way. Thanks to Dr. Pfeffer, Yohan is walking better than ever before. We are forever indebted to him for his surgical skills, fabulous bedside manner, and the care and compassion he showed over the past 12 months. He’s an amazing doctor and a brilliant surgeon. We are forever indebted to him.

And special thanks to Robin Tobias, his longtime physical therapist who taught him to use crutches, gave him exercises to rehab his withered leg and tortured him for 2 months, twice a week, to get his legs strong and muscles stretched out. We love you!

Uncle Chris, who created and organized the Cycle 4 CMT events also played a special role in keeping Yohan upbeat and smiling during these past 12 months. Many others have been overwhelmingly supportive over the past year too and to everyone who supported Yohan through thick and thin, and to those who sponsored his most recent 1-mile walk for the Cycle (and Walk!) 4 CMT this year, he writes,

Today, I write this email from my studio apartment in Claremont, CA where I am in a graduate program, studying Psychology. I cannot tell you how grateful I am to be able to further my studies and move on with my life.

I am happy to report that I was able to walk a full mile during the Cycle (and Walk!)  4 CMT on August 27 (see the picture of my Fitbit below, if you want proof). Your continued support was instrumental in motivating me to work towards and eventually meet my goal. As you know, this year has been extremely difficult, but I have managed to push through, overcome the challenges and succeed! Your unwavering encouragement and friendship have truly helped me to keep my spirits up – the idea of giving up was never, ever an option.  I am eternally grateful for your generous gifts and steadfast belief in my capacities. Thanks again!

 

With Love,

 

Yohan

 

Below are a few of the pictures, taken by my brother, George Ouellette of the Cycle 4 CMT event:

 

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Yohan’s 1 and then some miles!

 

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Cycle Event – Me, Gilles, Cardboard Yo and Uncle Chris
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Cycle 4 CMT

 

 

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Cycle 4 CMT

 

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Group Photo!

 

 

Tonight, the house is much quieter, a bit too quiet, in fact. Gilles and I feel Yohan’s absence acutely. The first couple of days did not feel comfortable. We both experienced melancholy, pride, anxiety, and relief – relief that it all worked out which means that Yohan was able to pursue his dreams. We’ve talked to him off and on, and he’s adapting to his new digs very well and continues to walk as much as he can. When I asked him why he doesn’t bike to school, he says, “I like walking. It’s good for me.” Who is this child?  I wondered, too stunned to respond.

Why? Because 2 years ago, when Gilles and I encouraged him to remain active by biking for 10 minutes a day, he unraveled, “I do not like to exercise. I’ve never liked to exercise. Exercise does not fit into my life, now or anytime in the future. I have issues with fatigue, my feet hurt when I walk, and I have all I can do to get through every day, so please stop asking me to be active.”

Today, he sings a different tune. I mean, he’s no Arnold Schwartzenegger, but he wants to stay fit and ambulatory. When a basic function like weight-bearing is taken away, and you are lucky enough to get an improved version back (walking heel to toe with less pain), every step becomes a small miracle. Never will we take the small things in life for granted.

Thank you for being part of our journey. xoxo

 

 

How Much Do You Know About CMT?

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Top Twelve Reasons I’m Talking About CMT during Awareness Month

 

– When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this:

Let’s stop the nonsense. I’m looking for reactions of recognition, like Dr. House’s below:

9) Dentures? Besides having had too many cavities, crowns, and pulled teeth, there is absolutely nothing wrong with my dental hygiene. Yohan has beautiful teeth and healthy gums, too.  Dr. Howard Henry Tooth discovered this progressive neuromuscular disease at just about the same time as the French neurologists,  Dr.  Charcot, and his disciple,  Pierre Marie. So we are left with Charcot-Marie-Tooth or CMT.

8. Eponyms. Jean-Marie Charcot is known as the father of modern neurology. And, he made sure no one would ever forget his legacy. Why? He was generous enough to share his last name with a host of other diseases he studied:

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Personally, I think he was a narcissist.

Here is the short list of the master’s eponyms:

7) But, It Could Be SO Much Worse! 

I stop my complaining when I remember that the name  COULD definitely be much worse.  Why? One of my good doctor friends, a most reliable source, explained that Dr. Nikolaus Friedreich, as in the neuromuscular disease Friedrich’s Ataxia,  also wanted credit for the discovery of CMT, but the message of his discovery did not reach the disease-naming committee in time. It had something to do with an unannounced closing of government offices. So the Grand Poo-Bahs did not receive the important Carrion Pigeon or telegraph messages. Bummer for Nikolaus and hurrah for people with CMT everywhere! We don’t have Charcot-Marie-Tooth Freiderich disease (CMTF), but rathe

Thank God for small miracles.

6. Let everyone know that CMT does not stand for:

Country Music Television

Childen’s Musical Theater

Certified Massage Therapist

5. Pronunciation: Give others ways to remember the name, pronounce like:

\(ˌ)shär-ˌkō-mə-ˌrē-ˈtüth-\

or

or

5. Shark’s Teeth Convention? Once, I wanted to book a large room for a CMTA conference. The short discussion went something like this: “Hi. I need to book a meeting room for the Charcot-Marie-Tooth Association.”. “Okay, let me see. What is the date of your Shark Tooth meeting?

Carcharias_taurus_teeth (1)

Enough said. Ugh.

5. Rent a Costume or Let Your Pets Do The Dirty Work!

If you feel awkward about starting the CMT discussion, you and your animals can dress up like a shark – it’s fun and you are bound to get s few questions! Or, just paint your horse with non-toxic paint. People will ask…..trust me.

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4. Tell people you wear braces and when they look at your mouth, lift up your pant leg and flash them with your one-of-a-kind ankle-foot orthoses (AFOs).

3. Genius!

Wow your friends with your knowledge of medical jargon. Use CMT-related words like:

peripheral neuropathy, autosomal dominant, hereditary motor and sensory neuropathy, dorsiflexion, plantar flexion, pes cavus, myelin, axons, exome sequencing, orthosis, etc……

They’ll be stunned by your brilliance.

2. The CMTA makes it fun to celebrate and talk about CMT during CMT awareness month.  We have an entire interactive site dedicated to CMT awareness: https://www.cmtausa.org/community-powered-awareness-month-2018/

Quizzes

Give your friends and family the How Much Do You Know About CMT Quiz!

Be the expert on questions they can’t answer. Teach a friend and make good use of your never-ending CMT knowledge!

 

  1. Acceptance-Whatever you do, talk about your CMT. Knowledge is power. Let others know about the fatigue, the clumsiness, the high-arched feet, the braces and everything else that comes with CMT. Be factual. Own it and don’t let it own you.  If you accept your CMT, others will too.