Seeking Alternatives to Narcotics: Cannabis

We are in the midst of an opioid overdose epidemic.

As the laws on prescribing narcotics become stricter, the millions of people who suffer from chronic and debilitating pain are left to fend for themselves. Denied access to pain-relieving medication, those with excruciating conditions are suffering, searching for alternative forms of relief.

It is in this light that I asked neuromuscular specialist, Dr. Greg Carter, chief medical officer of St. Luke’s Rehabilitation Institute and clinical professor at Washington State University’s College of Medicine about his research on cannabis as it relates to neuropathic pain in CMT.

 

By Greg Carter, MD

Humans have used cannabis (marijuana) as a safe and useful pain reliever for thousands of years. With appropriate patient screening and physician oversight, it can be used to treat chronic pain, particularly neuropathic pain, which causes people with CMT much grief and suffering.

Originally delta-9-tetrahydrocannabinol (THC) THC was felt to be the main active ingredient in cannabis. However, over the past several decades, other compounds unique to cannabis (“cannabinoids”) were isolated and characterized. Cannabis is now estimated to contain over 100 such compounds, many of which are not psychoactive but have potential medicinal benefits. This includes compounds like cannabidiol (CBD) and cannabinol (CBN).

We now know there is an internal cannabinoid system in our bodies that is intricately involved in the control of movement, pain, memory, mood, motor tone, and appetite, among others. Activation of this internal “endocannabinoid system” is what produces the runners high, among countless other physiological effects.

Overall evidence indicates that cannabinoids are safe and effective if used properly and may relieve pain without serious adverse effects. You do not need to be “high” to get pain relief. Strains that have higher CBD content and lower THC strains are the best. Patients should not smoke cannabis but rather use concentrated tinctures, putting several drops under the tongue. Vaporizers can also be used, which allows for inhalation of active hot mist, without the smoke. For dosing, patients should “start low and go slow.” They can take two or three inhalations, stop, and wait 10 minutes to see what the effects are. Ingestion takes about an hour to get effects so it’s harder to dose but lasts longer. Cannabis is absorbed through the skin and may be used in a liniment for localized pain. Patients should not drive or do anything that requires full cognitive and motor function while medicated with cannabis.

Patients with CMT need to be aware of the laws in their particular state or country. Even in states that allow for medicinal use, there may be laws that require that all standard means of treating pain be tried and failed before cannabis can be offered. Arguably, any decision to offer medicinal cannabis as a treatment option will depend on the severity of the underlying pain condition and the extent to which other approaches have been tried. Patients also need to be aware that the use of cannabis for any reason remains illegal under federal law in the United States.

 

 

Here are a few of his sources, including one of his research papers:

Br J Clin Pharmacol. 2011 Nov

Cannabinoids for treatment of chronic non-cancer pain; a systematic review of randomized trials.

Lynch ME1, Campbell F.

 

Abstract

Effective therapeutic options for patients living with chronic pain are limited. The pain relieving effect of cannabinoids remains unclear. A systematic review of randomized controlled trials (RCTs) examining cannabinoids in the treatment of chronic non-cancer pain was conducted according to the PRISMA statement update on the QUORUM guidelines for reporting systematic reviews that evaluate health care interventions. Cannabinoids studied included smoked cannabis, oromucosal extracts of cannabis based medicine, nabilone, dronabinol and a novel THC analogue. Chronic non-cancer pain conditions included neuropathic pain, fibromyalgia, rheumatoid arthritis, and mixed chronic pain. Overall the quality of trials was excellent. Fifteen of the eighteen trials that met the inclusion criteria demonstrated a significant analgesic effect of cannabinoid as compared with placebo and several reported significant improvements in sleep. There were no serious adverse effects. Adverse effects most commonly reported were generally well tolerated, mild to moderate in severity and led to withdrawal from the studies in only a few cases. Overall there is evidence that cannabinoids are safe and modestly effective in neuropathic pain with preliminary evidence of efficacy in fibromyalgia and rheumatoid arthritis. The context of the need for additional treatments for chronic pain is reviewed. Further large studies of longer duration examining specific cannabinoids in homogeneous populations are required.

______________________________________________________________________________

 

J Neuroimmune Pharmacol. 2015 Jun;10(2):293-301.

Cannabinoids for the Treatment of Chronic Non-Cancer Pain: An Updated Systematic Review of Randomized Controlled Trials.

Lynch ME1, Ware MA.

Author information

1

Departments of Anesthesiology, Pain Medicine and Perioperative Care, Psychiatry and Pharmacology Dalhousie University, Halifax, Nova Scotia, Canada, mary.lynch@dal.ca.

Abstract

An updated systematic review of randomized controlled trials examining cannabinoids in the treatment of chronic non-cancer pain was conducted according to PRISMA guidelines for systematic reviews reporting on health care outcomes. Eleven trials published since our last review met inclusion criteria. The quality of the trials was excellent. Seven of the trials demonstrated a significant analgesic effect. Several trials also demonstrated improvement in secondary outcomes (e.g., sleep, muscle stiffness and spasticity). Adverse effects most frequently reported such as fatigue and dizziness were mild to moderate in severity and generally well tolerated. This review adds further support that currently available cannabinoids are safe, modestly effective analgesics that provide a reasonable therapeutic option in the management of chronic non-cancer pain.

 

Pain Manag. 2015;5(1):13-21. doi: 10.2217/pmt.14.49.

Re-branding cannabis: the next generation of chronic pain medicine?

Carter GT1, Javaher SP, Nguyen MH, Garret S, Carlini BH.

St Luke’s Rehabilitation Institute, Spokane, WA 99202, USA.

Abstract

The field of pain medicine is at a crossroads given the epidemic of addiction and overdose deaths from prescription opioids. Cannabis and its active ingredients, cannabinoids, are a much safer therapeutic option. Despite being slowed by legal restrictions and stigma, research continues to show that when used appropriately, cannabis is safe and effective for many forms of chronic pain and other conditions, and has no overdose levels. Current literature indicates many chronic pain patients could be treated with cannabis alone or with lower doses of opioids. To make progress, cannabis needs to be re-branded as a legitimate medicine and rescheduled to a more pharmacologically justifiable class of compounds. This paper discusses the data supporting re-branding and rescheduling of cannabis.

 

 

CMT: An Obstacle To Success?

 

Yohan in PT – Prediagnosis

“His test came back positive for what? Sure, that explains a lot, but what’s it called again?” I asked stunned and a lot bewildered. “CHär/- Kät/ -Merēd -TOOTH, which sounded just wrong when he said it. I guess it sounds strange ANY way you say it, but he was completely butchering the French pronunciation of my son’s new disease (we are all French – can you blame me?) The take away was that our beloved 7-year old son Yohan had a progressive disease of the nerves, WITH NO TREATMENT OR CURE, which would make his muscles weak and useless over time. I felt dead inside – for a very long time.

Alpine Slide, Stowe, VT

My world shattered into millions of pieces that day, and I never thought we’d be able to pick up all the scattered bits to reformulate our dreams, our hopes, and our wishes for our son and our family. This reassessment took time, effort, and a lot of soul-searching, but we managed to accept the diagnosis and manage the Charcot-Marie-Tooth disease or CMT the best we could…. one day at a time.

As a mom, it was tough watching my child struggle with pain, braces, physical limitations, and obvious differences. Maternal instinct ordered me to protect, shelter, cajole, and, especially, do something—anything—to make the world a friendlier, more secure place for him.

For a while, school also became an inhospitable place, and bullies had their way of ruining a perfectly good day. Yohan’s self –esteem and self-confidence took major hits and his anxiety skyrocketed. The more I tried to lessen his burden by catering to his needs and lightening his load, the more resentful and withdrawn he became.  Unknowingly, I was giving him the message he should not go out of his comfort zone because the world is a dangerous, scary place. And, I was setting him up to be reliant on me for simple tasks he was able to do all by himself.

We found an excellent therapist whose specialty was counseling kids with medical issues. Our goal was to empower him by making him accountable for his actions, giving him more and more responsibility, and providing him the space he needed to become autonomous and independent.

Sounds pretty good on paper, but implementation was another story.

On one of our many trips to Vermont, Yohan wanted to try snowboarding. I subtly, but unsuccessfully tried to talk him out of it because I did not want him to get hurt nor fail. He has CMT-related back issues (kyphoscoliosis), tight calves and heel chords.

Kyphosis + Scoliosis = Kyphoscoliosis

 

I assumed the worse – in my frightened mind, he had at least a 75%, maybe 80%  chance of falling in the powdered snow, way over his head, and suffocating because he would not be able to stand up.

First Snowboarding Adventure

With the least amount of enthusiasm you can imagine,  I rented the snowboarding equipment, grumbling under my breath the whole time, and when father and son left early one morning after Christmas, I stayed home and tried to keep very busy, blotting out what was happening on the slopes.

Later that day, after what seemed like an eternity, Yohan burst through the door, still in one piece and with a look of content satisfaction on his face. “I loved it!” he blurted out proudly. “I’m going to take this on seriously! I had such a great day!”

Like many first-time snowboarders, Yohan took a good many tumbles and falls in the snow, but he was confident in his abilities. He knew what he wanted, so he left home with determination and a can-do attitude, and came back fulfilled with a sense of accomplishment.

That event was followed by many more like it and served to reinforce what I already knew as a parent but still found difficult to wrap my head around.  Even though Yohan has CMT, there are many things he can do with the right support, guidance, and freedom.  Gilles, my husband was exemplary in providing many unique opportunities for him to explore his surroundings. An avid skier, mountain climber, biker, etc….he went out of his way to find activities that he and Yohan could do together, as a team.  I am so grateful for my husband’s patience, effort and time with Yohan, as his childhood was full of fun adventures and learning experiences.  I wasn’t as thrilled about some of these outings at the time, but I usually saw the photos after the fact and they speak for themselves-they have memories- good and bad- to last a lifetime!   As parents, if we do not encourage our children to dream big, they might never know all the beauty, wonder, opportunity this world holds.

Kayaking with Gilles and friends
Yohan with Athos, Gilles with Chyna

 

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Yohan is scuba certified, thanks to his dad.

Do you remember the movie about the life of Ray Charles, “Ray”? Despite his total and permanent blindness at the age of 7, Ray Charles’ mother treated him the same as any other child. He was made to do his chores, learn to get around without a cane, and fend for himself. “I won’t be here forever,” she repeatedly told him. Harsh though her treatment of the young Ray seemed, their story is filled with passion, love and many teachable moments. As hard as it may be, and still is, I have witnessed Yohan’s challenges, disappointments, and heartbreaks. But I no longer worry as I am confident he has the emotional fortitude to get through just about everything. If there is just one gift with which I wish to leave him, it is the knowledge that with an open and positive mindset, he can and will achieve his heart’s desire.

 

Archery is still one of his favorite pastimes.

 

 

CMT Is Exhausting: 5 Insider Tips For Friends

Judging a Book by its Cover-Just Don’t

“Who is that girl?” she asked, squinting warily while jerking her chin forward like a rooster, not so discreetly pointing out the slim, well-dressed woman in question. “She doesn’t have CMT! Look at those heels!! Pfft! Forget about it. She’s a fraud!” It’s true, Jeana did not appear to have CMT on the outside, but her past revealed a different reality. Surgeries on both feet when she was only 16 helped her gait immensely, enabling her to walk brace free today.

However, if you look real close, her pinky toes look funky, betraying a harrowing brush

.

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Jeana’s pinky toe reacts to the surgeon’s scalpel.

with a surgeon’s scalpel. “No need to worry about the little toes on each foot.” the surgeon grinned. “I simply removed all the bones! All fixed!” So, instead of hammer toes, sticking up and out, she ended up with cute, floppy, puppy dog ear toes, which prove to be quite the challenge when wearing sandals.

Floppy toes, like floppy ears, have a mind of their own!

People’s CMT vary dramatically from one person to another, and telltale symptoms of foot drop, muscle wasting, fatigue, pain are not always super obvious. So, to my embarrassment, I often forget she has CMT.

But, I forgot you have CMT!!

How many times has CMT gotten me into trouble? When Jeana and I organize CMTA conferences together, we always do our best to make sure that everything is handicapped accessible; tongs are not used, tables are separated, leaving enough room for scooters and wheelchairs to pass, boxed lunches are chosen over buffets. Inevitably, no matter how much we prep the hotel staff, someone always seems to make a mistake, and we have to think fast on our feet to rectify the situation.

At the Patient and Family conference we held in Los Angeles a few years back, I remember the room being stuffy and hot. After 90 minutes of sweating and fanning ourselves with the paper programs, we took our first 15-minute break. “A big round of applause for Dr. So and So…what an informative presentation!” I exclaimed into the microphone.   “Now, let’s take a few minutes to stretch and quench your thirst with some nice, refreshing beverages. We’ll see you back here in 15 minutes.” I walked out into the hall, and what do I see? Big, heavy pitchers of water and lemonade. Merde!

Making life difficult for people with CMT.

We quickly asked family and friends without CMT or hand weakness to serve the drinks during the break.  After about 5 minutes, I look over at the drink station and our beverage volunteer happened to have wandered off and just disappeared into thin air. People were thirsty….parched even and getting more and more impatient while shifting their weight from left to right, left to right just to stop from teetering over (keeping your balance while standing is difficult with CMT).

I ran over and filled the empty spot for a couple of minutes before my little eye spied Jeana, who was talking, and talking and talking (no surprise there, right?), to a conference attendee.

I spied Jeana with my little eye.

“Jeana,” I blurted out frantically and a bit too harshly,  “if you can’t find someone to stay at the water station, just stand here and serve the beverages to these poor people with CMT who are struggling.” She looked at me in disbelief. Her face expressed what she was thinking. “Really? You are asking me to fill glasses, dumb ass? I too have CMT!” But being the mature and respectful person we’ve all grown to admire and love, she nodded her head and made her way to the water station and tried her best to serve our conference clientele. When I realized what I had asked of her, I regretted it….immediately.  Not because I made her suffer, but because she would never let me live this situation down….EVER!  As much as she did not say in the moment, she let her thoughts be known loud and clear after the conference. In fact, she won’t hesitate to bring this up when she needs a little extra material to tease me with. I hear her voice now, “Oh, really? I’ve got a better one. Elizabeth, remember that day when….  “

Sassy!

People with CMT are fighters with motivation, determination, strength, and willpower. Some are a bit sassy, too! One day, wearing my very concerned and sad face, crying-face_1f622I said something like, “Bethany, I don’t know how you do it every day.  Just putting on socks, braces, and shoes takes so long. It all seems so limiting.”   I was attempting, albeit poorly, to relate to her emotionally in some small way.  Thankfully, I have a Master degree in Counseling Psychology, which makes communication with people from all walks of life so much easier (Like Judge Judy below, I’m inflicting some heavy duty eye rolling on myself right now).

If you know Bethany, she usually thinks through her answers before responding. Not that day! That fine afternoon she was quick and sharp, replying without missing a beat, “Yeah, it’s not the best, but I feel fortunate that I’m walking. From wheelchair to walking is a pretty huge deal.” There was a short hesitation before she emphatically reminded me that she was able to walk much further and longer than I can…a LOT further and a LOT longer. “You are limited by your foot pain.  My braces have set me free!” she replied without flinching.

IN YOUR FACE! OUCH! Insert knife and rotate slowly 3 times. I mean, what do you say to that? ……..Exactly. I said nothing and followed her progress as she trained to walk a 5-day 40 Mile Trek of Peddars Way in Norfolk, England! She succeeded and came through with flying colors!

Bethany walking and training. I am in the picture for effect only. 🙂

Just Ask

I had spoken over the phone to Bethany quite a few times before she moved to the Bay Area in 2012. We had some great conversations, talked about volunteer opportunities and CMTA-related projects. When she moved here, we made a lunch date. I drove. On the way to the restaurant, I asked 100 million questions to which she sequentially answered, “Yes. No, I don’t know”  over and over again until I got really bad cotton mouth from talking too much. So, I stopped blabbering and lived painfully through seconds upon seconds of dreadful silence (The longest ten seconds I’d ever experienced –  it felt more like 10 hours- can you tell I’m an extrovert and hyperactive?) Bethany started to loosen up by the end of lunch, and I caught a few glimpses of the witty and sardonic person living and breathing underneath that cloak of quiet reservation.

Heading back to the car, we crossed the road and I saw that she was struggling a bit to walk, but I did not know if she needed or wanted help. What to do? So, I did absolutely nothing. I pretended she wasn’t struggling and that everything was A-Okay. Walking a step or 2 in front of her, I heard a faint whisper, “Elizabeth?”  I turned around to an outreached hand.  “Can you give me your arm to cross the road?” she asked politely (her mother did a hell of a job teaching this girl manners). My elbow jutted out in a microsecond and off we went, arm in arm across the road. Walking harmoniously side by side, she interjected, with a mischievous grin,” Jeesh. You of all people did not think of lending a helping hand? I’m so disappointed.” WHOA! The girl is a live wire….a comedian! This snarky comment was proof that her dad was also very involved in her upbringing. From that moment on, we became forever friends.

Laughter Really is the best Medicine!

The CMTA held its first-ever leader conference in Las Vegas many years ago. Leaders from all over the US attended, forming bonds of friendship and caring. The first evening, after dinner, we all made our way to our rooms, preparing for a very long day ahead. Breakfast was at 8am sharp the following day. At 7 am, Pat D. our Director of Community Services at the time called me with an urgent request, “ One of our leaders needs help buttoning and zipping his pants.”  Apparently, he lived with family and on his own, buttoning and zipping were practically impossible. “Why do I have to go?” I groaned.  “Can’t we get Dana to go help him…man-to-man? Now, on the verge of yelling, Pat reminded me that, “Dana can’t button or zip his own pants, how is he going to button someone else’s pants?” Good point.

Zippers and Buttons: the enemy

So, off I go to room 3016. When he opened the door, I could tell by his red cheeks that he was quite embarrassed. I felt a bit awkward, but what were our alternatives? I could have insisted that he attend the conference in his boxers, but I’m not usually that mean. So, I simply knelt down in front of him, (please do not visualize this scene!) zipped and buttoned him up and made a joke about the entire scenario. It was a true bonding experience.  The rest of the conference was a no-brainer compared to that experience.

To all my friends with CMT, thank you for trusting me with your struggles, accomplishments, thoughts, and anxieties. And thank you for your patience. I’ve learned so much from every single one of you and continue to learn more every day. And, when I mess up, let me know  – my closest friends don’t let me off the hook, why should you?

Good Friends Are Hard To Find (which can be a very good thing). From Left to right: Me, Bethany, Jeana

What Happens At Cooterfest, Stays at Cooterfest!

It was in the year 2010 that I finally had the opportunity to meet Ronnie Plageman Sr. in person.

Image result for ronnie plageman inverness
Ronnie Plageman Sr.

Our first encounter was at the first-ever CMTA Leader Conference in Las Vegas. We had had many phone calls over the years, and it was time to meet the voice behind the receiver, the man who started the Inverness, Florida CMTA support group. He was a kind, gentle and upbeat soul, and his accent betrayed a touch of the south, so much so that I had the darnedest time understanding him. And not to be disrespectful or anything, but to my ears, it sounded as if he were speaking with marbles in his mouth.

So, when I finally met him, and just for curiosity sake, I asked him to open his mouth and say, “Ahhhhhhhhhhhhhhhh. ” I saw a tongue, teeth, fillings and crowns, but nope, no marbles- it was that southern twang throwing me off.

While waiting in the buffet line, he threw out an invitation: “Y’all otta’ come to Coofest.” When he spoke about this Coofest, his eyes lit up and he became as animated as a flailing live wire. From the sounds of things, Coofest had to be a lot of fun, topped off by fundraising and the spreading of CMT awareness. “I’m in!” I shouted as if he had hearing loss. He didn’t. I was just overcompensating for that southern drawl.  Gesticulating wildly and speaking loudly, but slowly, I enunciated every syllable of every word with grand effort, just to make sure we understood one another. I’m not sure this helped either one of us at all. In the end, my communication efforts made me look like a hyperactive mime with a voice.

Since Coofest was not brought up again during the conference, I thought it was just a bunch of mumbo jumbo – passing talk, a never-to-be fantasy trip.

I didn’t see it coming…..

2 weeks later, Ronnie called me…
“ ‘lisbeth? Ronnie Plageman here from Inverness, Florida. Makin’ sure yer still comin’ to Coofest. Jerry’s pullin’ the Archy train, all the way ferm Las Vegas! You comin’ with the gang? ”  “Um, uh, um….. well, if Jerry is pulling the entire Archy train, a mere 2,400 miles ONE WAY, how could I say “No”? Trying to buy some time, I told him I’d get back to him within the next couple of days and I immediately called Pat D.
Coofest? It’s not Coofest!.” Pat scolded. “It’s Coo-TER-fest, pronounced, Kooderfest.” Well, now I’m really not going, I thought to myself. This whole thing sounds just wrong.

“What exactly is a cooter?” I ventured hesitantly? Pat D rolled her eyes.” A cooter is a North American river turtle. ”

Florida Cooter

Didn’t you click on the website link to read the story behind Cooterfest? she asked with disappointment. I did not bother to respond because the answer was quite obvious. Pat D. sighed. “Well, if you had done any research, you would know that the Florida Cooter got its name from an especially heroic turtle who impressed some other animals with its feats of bravery.  At the end of the story, the possum then gave the title “Courageous Turtle” to the reptile, but a baby mouse, who had a speech impediment, shortened the name to ‘cooter.’ So, Cooterfest is  an annual celebration of a turtle who saved the animals that lived on the shores of Lake Tsala Apopka.”

Pat D
Pat D.

So….obvious? Seriously, Pat, the former schoolteacher made it sound as if Cooterfest was a major event in American history. I must have been sick that day at school.
Having worked at the CMTA for almost 20 years before her untimely passing in December of 2015, Pat Dreibelbis, our Director of Program Services, was our leader, historian, mentor and friend. Pat D. is the one who got me involved with the CMTA and she’s the one who talked me into meeting her and Dana, the CMTA’s jack-of-all-trades, into flying to Orlando for a CMTA road trip in 2010. Somehow, Jeana Sweeney, who was working part-time for the CMTA at the time managed to reserve a seat in our van. Well, we had stipulations for her to meet should she decide to come, and like the good sport she is, our terms were unconditionally accepted and off to Cooterfest we went!!

And who is Archy and what is the Archy train? Archy became the CMTA’s mascot in 2009. Archy was a bit different than you and me, because Archy was actually a turtle, a turtle with high-arched feet, hence the name – Archy.  Archy’s adventures (written by Pat but inspired by us all) were featured in The CMTA Report from 2009 to 2014 and soon became a favorite for kids of all ages. See the entire collection of stories here: https://www.cmtausa.org/the-adventures-of-archy/

Archy, the CMTA mascot

Longtime CMTA volunteer and support group leader Jerry Cross had built and decorated each Archy train seat by hand, using overturned wheelbarrows and then hauled it from Nevada all the way to Inverness, Florida just so that the kids at the festival could hear Archy tales and take rides in the train.

As promised, Jeana showed up wearing her bright green turtle costume, claiming to be Archy’s sister, Tara.  Well, as you might guess, Tara was a big hit with just about EVERYBODY!

Tara the Turtle

The weekend was a blast. We informed the Cooterfest attendees about CMT, sold CMTA materials, spoke at Ronnie’s support group, laughed a lot and bonded with our friends, Jerry, Ronnie and their families.

Archy Train
The Cooterfest Gang

After Cooterfest in 2010, we all kept in touch regularly. CMT brought us together and kept us together, if not in person, then by phone, email, and text.

When I recently heard of Ronnie Plageman’s sudden passing in April 2017, I went numb with disbelief. I am also very fond of Ronnie, his wife Judy and Ronnie’s son, Ron who is our CMTA branch leader in Denver, CO. The sadness brought back memories of good times past where turtles saved lives and trains brought smiles to children and their parents.

Our friend Jerry Cross, the self-proclaimed grump from Pahrump, who finished every conversation with, “smile and be happy” left this world after a long illness at the end of 2015.  Pat D also died suddenly,  on Dec.  16, 2014, with Dana by her side.
We deeply miss Ronnie, Jerry and Pat D. They were inspirational people who got involved with the CMTA to make a difference and that they did. They were CMT warriors who never, ever gave up the fight to create a better world for those living with CMT. I am proud to follow in their footsteps, doing my best to widen and fortify the trail they forged. Their legacies loom large.

Long Live Cooterfest!

Vicki Pollyea, Thanks for the collage!

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The Inside Scoop: The Real Story Behind Bethany’s Book, “How Should a Body Be”?

One day about 7-8  years ago, I get this random call from a young woman from Michigan. She wanted to volunteer with the CMTA. “Sure!”, I said enthusiastically. “We are always looking for volunteers-ALWAYS!”  Now, compared to my loud, overly animated voice and my quick speaking conversational style, my new friend, Bethany, spoke slowly, methodically and in whispered tones. She actually takes a moment to think before she spoke – a new concept for me.

She wanted to volunteer for CMTA but she was about to have foot surgery, and she assured me that she’d get back to me during or after recovery. I had no expectations, but she did indeed get back.  From this day forward, our friendship blossomed. I crept into her life like mold, and now, she’s never getting rid of me. We are stuck together like velcro.  She moved to London last year, probably hoping the distance would give her some space-WRONG. We talk frequently, Facebook tons, and I’ll be seeing her next week in Miami.

Following her then boyfriend, Josh,  to the Bay Area, California (a joke you’ll understand once you’ve read Bethany’s book), we got to know each other well. She really is not as quiet as you think when you first meet her. In fact, she’s quite chatty and holds her own in debates. From a shy, soft-spoken teen, to a master in digital communications, a successful fundraiser and a moving motivational speaker, Bethany has become a well known and loved figure in the world of CMT.

At 25, Bethany has published her first book, How Should a Body Be? which gives an intimate, honest and heartfelt portrayal of what it is like growing up with different abilities.  She’s a wonderful writer and I am in awe of her strength and “determination”  (I prefer the word stubbornness, but  Bethany’s not thrilled with that word). Here are my thoughts on Bethany’s memoir:

Bethany Meloche’s thoughtful memoir—“How Should a Body Be?”— recounts the life story of a strong-willed young woman with a never-give-up, never-look-back stance to being alive in this world. In a culture that places so much emphasis on physical perfection, many are dissatisfied with their appearance and obsess over achieving unrealistic standards of beauty and fitness. Compound these everyday societal pressures with a progressive neuromuscular disease like Charcot-Marie-Tooth—which causes foot deformities, muscle weakness, tremor and breathing difficulties—and growing up with confidence and assurance becomes that much more arduous.

With wit and humor, Bethany relates the challenges of living in a world where people’s well-intentioned, but short-sighted commentary and feedback inadvertently amplify her feelings of self-doubt, uncertainty, and isolation.

Driven by a lust for knowledge and unquenchable curiosity, Bethany lives each day to the fullest, making her story both unique and inspirational. It would have been easy for Bethany to surrender, to lose hope, to fall into the depths of despair and depression, but by turning her anger outward she discovers strength, willpower, connection and success.
“How Should a Body Be?” is a personal journey toward self-acceptance, healing and living life to its fullest, despite apparent limitations. Mature beyond her years, Bethany offers nuggets of wisdom to be shared, pondered and cherished. Honest, truthful and profoundly insightful, this book is for people with CMT, their families, their friends and anyone who struggles with self-image, confidence and the fear of being seen. This is the best book to date on growing up with physical differences, obvious or not.

 

Bottom line: Buy it. It’s that good. Buy it here:  http://amzn.to/2lBC9cz

Still not convinced? How can you say “no” to this cute face?

Image may contain: 1 person

 

 

My Brother, Anand

As the video pans out, pain sears through my body as I watch him “walk.” Feeling somewhat queasy, I cannot take my eyes off from this young man living in Kolhapur, India as he carefully crosses the colorful and well-kept room with his thin CMT legs and horribly twisted feet. Each cautiously placed step reveals the soles of his feet, which are perfectly perpendicular to the opposing ankle. I’ve seen bad cases of supination, but it looked like his feet just decided to fold to the inside, forcing the tips of his tibia and fibula to bear his weight.

His hands are also terribly affected by CMT. A close-up reveals clawed fingers, stubbornly bent, refusing to move. Managing a few callisthenic-like arm movements, it becomes apparent that CMT has also ravaged his hands, leaving them weak and atrophied.

 

His email, video attached, found itself in my inbox.

Jan 30, 2013

Dear sir/madam

As you know I have CMT & I am from India. There is no awareness about CMT compared to your country. So please give me information on what type of care should I take. What type of exercise should I do? What type of shoes should I  wear?
Please help me. I am forwarding my video clip.

Anand Pramod Patki

 

I immediately emailed him. From that day, 4 years ago, Anand has become a close friend….my brother.

His story goes something like this: Anand started showing signs of CMT at 6 years old. His toes started to claw and the muscles in his lower legs were weakening.

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Anand – Age 6

 

By the age of 10, he was unable to stand upright in one position for more than 2-3 seconds without losing his balance.

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Anand – Age 10

He was 15 years old at his sister’s engagement party, but he could no longer walk long distances as his feet started to curve inward.

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Anand – Age 15

 

Despite the challenges of living in India with a physical disability, Anand finished high school and even received the 2nd highest grade on his high school board exams. A writing aid was offered, but Anand refused, insisting on independently write the answers to a grueling 3-hour long exam.

Officially diagnosed with CMT at age 20, his neurologist outright told him: “There is no treatment and you will become weaker and weaker.” With limited resources, information or support, Anand found the strength to mentally accept the diagnosis, and to retain a positive outlook on life.  He had a supportive family, parents, intelligence and deep inner fortitude.

When he reached out to the CMTA, he had been working as a computer operator at the Postal Department in India. There is no Americans with Disabilities Act (ADA) in India. To keep his job, and to make up for his slower than average data entry work, he had to work continuously for more than 8 hours at a time, without the luxury of a single break. Even the bathroom was off limits. Even if he had had the time, handicapped bathrooms are few and far between in India.

Yet, Anand emphasized, “I am enjoying my job. At this stage, I cannot walk without support on hard surfaces. I face a lot of problems performing my day- to- day tasks, like buttoning my shirts, wearing my shoes, counting cash, handling vouchers, inserting paper in the printer, etc.  I’ve also had a chronic ankle injury for the past five years. But, I am happy in my life. I have no complaints with my God.”

I communicate frequently through email and Skype with my Indian friend. Each correspondence brings us closer. I marvel at his optimism, boyish grin and resolve to live the best life possible despite all the obstacles he faces every single day.

But what could I do? Except for Anand and his family, I know no one in India. His town of Kolhapur is a mere 8,500 miles away from where I live in California.

map

 

Yet, as we wrote back and forth, the possibility of foot surgery was discussed. Even if we did stumble upon an orthopedic doctor, would he be able to correct Ananda’s feet?

After months and months of searching, I turned to Dr. Glenn Pfeffer, who put me in contact with Dr. Rana, a well-known orthopedic surgeon who practices in New Dehli and was willing to take on this complex procedure.

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Dr. Rana

 

With the precious support of my colleagues on the CMTA’s Board of Directors, Anand was given the opportunity to have a potentially life-changing surgery.

2 years after meeting Anand, surgery was scheduled for April 18, 2015. Dr. Rana would perform a triple arthrodesis (fusing the three joints in the hindfoot) with Achilles tendon lengthening on each foot, one week apart. To get to New Delhi, Anand took his first-ever plane ride with his Baba (father), after which he enthusiastically wrote: “I was feeling like a free bird who flies in the sky!”

The surgeries went well, but there have been some complications due to low bone density, pressure sores, and screws not wanting to stay in place. Anand has waited patiently while healing and has had to undergo several smaller procedures to remove those uncollaborative pieces of metal.

With the help of thick plastic leg boots, today, Anand is able to walk on the soles of his feet.

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Watch this:

 

 

When he went back to work, his colleagues were thrilled to see him and stood, applauding his return. In 2-3 months, the braces will be exchanged for lighter, more user-friendly AFOs. The day that he is able to put on a pair of shoes, will be the day that we celebrate and consider the surgery to have been 100% successful.

Skype has been a wonderful tool. Virtually I have visited Anand in India and he has spent time with us in California. Yet, virtual reality will never be on par with being able to physically hug my brother, sit next to him, enjoy a meal, laugh, cry, talk. My dream is to visit him in Kolhapur. And I will and look forward to the day we can walk, arm in arm, down the street with my brother.

 

Anand’s Words of Wisdom

As you can see, I am getting weaker and weaker physically, but becoming stronger and stronger mentally. I cannot tell you that you will be victorious over your CMT, but you can manage the degeneration process of CMT by following these steps:

  • Always think positively.  To train your mind to think always positively is essential.  I believe in God and I also believe there are positive waves in nature.  So, you can change your life with positive thinking.
  • Remain hopeful. Don’t feel sad in your life. Our scientists and researchers are doing a lot of experiments on CMT. I know in next five years, we will get very close to making a world without CMT.
  • Don’t think of yourself as disabled. You are ‘specially- abled ‘. I know we cannot do much about our physical capacity, but you have a normal brain. Use it with your full capacity. Be honest and work hard in your job or field and try to become specially- abled .
  • Thank God. Don’t curse your God because God has gifted you with a super brain. Use it as your sixth sense. God has gifted you with normal eyes. Use them to see beautiful and good things in your life. Be satisfied and happy with what you have. Do not feel  badly about what you don’t have.
  • The most important thing is to maintain your physical capacity and try to improve it with proper exercise. For me, Yoga is the best option to improve my muscle flexibility.

Isn’t he somethng?