Raising Kids With CMT-Where In The Heck Is the Manual?

Last week, I purchased a top-of-the-line 4K LED Smart TV with enough options to bedazzle even the most technologically gifted.  Some of the features were intuitive enough that I proudly disregarded the instruction manual altogether.  To my dismay, I soon discovered that a good number of even the simplest functions were complicated, puzzling and downright impossible to comprehend even with the handy user’s manual.

smart TV                                                           New Toy – LED TV

 

Realizing my dependence on this pamphlet of how-tos, I reflected upon all the parenting guides I have purchased over the years, all dealing with every different aspect of the child imaginable: the terrible twos, sleeplessness, anxiety, positive discipline, the emotional lives of boys, tolerating teens, etc  The one book I have yet to come across is called the “THE MANUAL: Raising Kids With An Unexpected Diagnosis (Like CMT, a Progressive Nerve Disease).”

 

Parenting-troubleshooting

 

My instruction booklet was not included in my take-home packet from the hospital when Yohan was born 25 years ago, and I still fantasize about getting my hands on a copy of this yet non-existent source of knowledge.

Initially, I learned to care for my bundle of joy by asking questions, reading a selective few of those parenting books I mentioned above, taking advice from others (even if unsolicited) and relied heavily on my own maternal instincts. Through trial and error, my husband and I, as do most parents, strove to raise and nurture our child to be a resilient human being, who would hopefully be happy, successful, compassionate, friendly, confident, etc….. None of these attributes are ever guaranteed, but parents can and do influence their children to a very large degree by modeling behaviors and values, including empathic listening, acceptance of the whole child, unconditional love, acceptance and positive discipline.

Born with unique dispositions and temperaments, every child will integrate what he or she witnesses, observes and experiences to form a personality, which is in a state of constant flux, molding to and shaped by the surrounding environment. Raising children is truly a humbling adventure, where perfecting parental skills comes through valiant efforts on the part of the father and/or mother to do the best they can at any given moment.

And just to keep us on our toes, life has this nasty habit of throwing wrenches into our well thought-out and admirable plans and dreams, forcing us to change directions or reroute our individual and family’s journey throughout life over and over again.

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For instance, when parents are told that their apparently healthy and precious child has a progressive neurological disease called CMT, (or any other chronic illness or disability) the world as they knew it comes to an abrupt halt. For a while, time just seems to stop as the shock of reality works its way through to the senses. With no current treatment or cure, CMT is a group of diseases whose effects vary greatly from one person to the next, even among members of the same family. The fear of an uncertain future for our beloved child creates a chaos so disruptive, parents may inevitably experience and re-experience a whole gamut of different feelings anywhere from grief, rage, disbelief, depression, anxiety, sadness, hopelessness, to guilt and disappointment. This flurry of unyielding and varied sets of emotions is unequivocally normal and expected in the face of such devastating and unwelcome news.

 

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Stages of Grief

 

We immediately wonder what this diagnosis means for our child’s future – will she be able to play the piano, have children and fulfill her dreams as an actress? Will his legs remain strong, what about his basketball career, and just how much will my son be affected?  Will he/she become more or less disabled than me, than my mother, than other family members? As concerned parents, we all have a tendency to get ahead of ourselves by asking a million questions about the fate of our children by continuously wondering and inquiring about what the future has in store, trying to predict what cannot be foreseen.

To top it off, in the midst of this traumatic news, unsettled parents must return home to their children, bearing the intolerable news that will inevitably change the lives of every single member of that particular family. How hard it is to remain calm, in control and at ease after you’ve been hit with the CMT hammer! In these delicate situations, let’s not forget that children are savvy readers of parental anxiety, tension, and stress. They are inexorably influenced by our attitudes, opinions, and expressions as they learn a great deal about themselves by watching, listening and absorbing all the subtle messages left behind in conversations to be had both in public and in private. They definitely do not wish to see us devastated by their disease (even if we are) and need most of all to be comforted, supported and understood.

So, when a parent unintentionally acts out his or her intense sadness, despair and anxiety in front of their children, the child is sure to take it all in, every bit of it. If our children receive messages confirming that their own situation is hopeless and the future bleak, he or she will surely feel out of control and helpless in the face of upcoming and ongoing adversity.  However, if our kids are met with reassurance and optimism, they will be more likely to cope adequately, if not conquer the intermittent hurdles that are bound to appear throughout their lives. So, the quicker we as parents learn to “deal effectively” with the challenges presented by CMT, the quicker our children will build the necessary coping skills and resilience to live well despite this disease.

Let me qualify the expression “dealing effectively with CMT” as an extremely subjective experience, which takes on a different meaning for each and every one of us. Coming to terms with your child’s progressive disease and limitations takes a lot of time and energy, and as you already know, this does not happen overnight, if ever at all.

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There are still moments when  I am angry at this disease and obstinately think of Yohan’s CMT to be the ultimate definition of unfair lots in life, followed by a pathetic, “Why me?”, “Why him?”, “Why us?” I usually manage to calm down by focusing on what he can do, by living in the present moment and by appreciating the gifts of today. I also fervently practice replacing my negative and catastrophic thoughts with a more positive and realistic perspective which encompasses a broader, less self-centered approach to challenging situations.

The brutal reality is that I cannot control his disease or make it go away.  However, we as parents are far from powerless and impotent. On the contrary, by sharing an unwavering hope for the future, role modeling coping mechanisms such as humor, optimism, faith while remaining connected to others for support, we are fostering resiliency and courage in our children, traits on which they will rely heavily today, tomorrow and the days to come.

Let me reiterate that as parents, we have the capacity to guide and support our children, despite the absence of that darn manual.  There are always silver linings to all black clouds, you may just have to look for them. Hurdles and stumbling blocks exist to a greater or lesser extent in everyone’s life and many times, these challenges will bring families closer together or even offer a deeper, more meaningful purpose to life itself. Whatever afflicts us or our loved ones and no matter how severely, life is truly what we make of it. By planting the seeds of hope, confidence, and self-assurance, we are offering our children the right to a bright and fruitful future.

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Whether it be CMT or some other uninvited disease, our children will have acquired the tools with which to triumph over whatever may befall them, because YOU, as parents, have given them the means. No one ever said that a parenting is an easy endeavor, but your hard work, time and patience is and will make a marked difference in the minds and lives of your children and the generations to come. Manual or no manual, your kids will be forever grateful, which I deem the best award a parent could ever receive.

 

 

 

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?

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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.

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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?

 

My Name is Not Grace

Dedicated to all my friends who have a love/hate relationship with shoes.

“I love those shoes….OMG – they are sooooo cute!” enthusiastically commented an unknown, young, attractive, athletically built woman.  I looked around, certain that she was addressing someone behind me or outside my range of vision.  Mouth hanging open, I stood stunned, realizing she was referring to my shoes, my size 12 purple and aqua blue Solomon running shoes. Managing to spit out a “Thanks!” her casual compliment rendered me speechless for all of about 5 minutes (which seemed like an eternity…..to me).

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Above: The Complimented Shoes 

 

The last time someone actually told me they liked my shoes was back in September of 1967. I was 5 and my mom had just bought me a pair of black, shiny patent leather shoes. The compliments I received! Overjoyed with my new shoes I ran, jumped, danced and then, never fail, I slipped on our hardwood floors, landing head first into the electric radiator, at the base of the wall. As blood gushed from the gash on my forehead, a cloth was applied to the wound where it stayed until we reached the ER. The stitches left a small scar above my left eyebrow, a foreboding symbol of future foot-related misery.

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Above: Me, Age 5, Patent Leather Shoes

Nevertheless, I had not yet received the memo about imminent foot woes, so when my mom had to order new and very expensive shoes and winter boots from a shop in Montreal because my instep was so high, I thought that I was really something special.  Although I hadn’t a clue as to what a high instep actually was, I didn’t care. I felt like a princess who needed the best of what money could buy, and from abroad, to boot (a 2-hour drive from my hometown of Burlington, VT).  “I could get used to a life of royalty-Queen Elizabeth,” I imagined, my illusions of grandeur already a problem at such a young age. The thrill of ordering our butler around, “Andrew, Caviar, please! “or “I’ll wear the dazzling rubies this evening, Alfred! Snap, snap…I haven’t got all day!”

As I grew taller, my feet inevitably grew longer. By 8th grade, I was at least 5’7’ and my feet already demanded a size 10 shoe. Long-limbed and gawky, I looked like a baby flamingo and walked like a newborn giraffe learning to take its first steps. Between the giraffe and the flamingo, I must have looked a lot like a fliraffe.

 

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Above: Baby Flamingo

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Above: Baby Giraffe

 

 

 

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Above: Fliraffe (a giraffe with baby flamingo feet)

 

If my parents had named me Grace, I would have been a laughing stock! It was bad enough with older brothers who had their own nicknames for me: clumsy, klutz, horse, big foot, clod, butterfingers, spazz, etc. I was always bumping into something and spent a  lot of time on the ground, either cleaning up something I had spilled or nursing wounded knees.

If you have CMT, you may be able to relate to my story and have a few of your own. Does this sound familiar? I fall over air, get caught up in my own feet, trip up stairs, run into furniture and constantly drop things. Here are just a few concrete examples which come to mind: I dropped my cell in public toilets, twice, got my bike tire caught in the rails of a tram, and just simply fell over onto my side in the middle of a busy plaza, tripped on nothing and everything, sprained ankles, broken toes and sported many, many bruises. And this is just the tip of the iceberg, as the list is way too long and the catastrophes, too many to count.

Many of my friends in high school and college wore high heeled shoes for events. Not me. At 5’9’’ I was already taller than the majority of other students, especially the guys. Secondly, a size 10 high heeled shoe was impossible to find and third, I would have broken my neck.  And have you ever found a sample size 6 or 7 shoe at the store, and when they brought out the size 10 or 11, it looked nothing at all like the size 7 you had already fallen in love with?

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Above: The shoes I wanted (floor model,size 7)

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Above: The shoes they brought out (size 12)

When I lived in France, the saleswoman wore a look of shock and disgust when I gave her my shoe size. As if being forced to wait on the Hunchback of Notre Dame, she nervously whimpered, “Madame, s’il vous plaît, look in zee secshun for zee man,” and she pointed in the direction of the men’s shoe department. How humiliating.

By adding padded and ultra cushy orthotics, my shoe size increased by 1 or 2 sizes!! On my body, an 11 or 12 shoe is not feminine. It just isn’t. I walk more like Herman Munster than a tall woman with long legs and big feet.

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Above: My body and feet

So when my new best friend complimented me on my “cute” shoes, I decided to take the compliment and wear it with pride. And, honestly, I am just grateful to be able to walk. Some are not so lucky. So, I say screw femininity.  The older I get, the less I care about what people think, especially if it is negative. Now give me positive commentary, and that my friends, is a different ball of wax.

Wheelchair Horror Stories – #1

Ever had to use a wheelchair to get from here to there? Now, I’m not talking about temporarily using a hospital wheelchair to nurse a broken toe or to be wheeled out of the maternity ward after having a baby. I’m talking about relying on a wheelchair to get around for an indefinite amount of time because walking is too painful, extremely hard or simply not possible.

When I was pregnant with Yohan, I developed plantar fasciitis. It was  1993 and we were  living in France at the time.  My french PT chose to implement jackhammer “massage” therapy on the bare bottoms of both feet to loosen up the tightened fascia.

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“Zis weel feel veghrry good. Eet weel ‘elp wit zee pain.” Monsieur Rémy promised.

He turned on the pummeling device and went to work for what seemed forever on the right foot: GRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK  (OW, OW, OW), and then the left: GRRRAKKA KKAKKAKKAKKAKKAKKAKK AKKAKKAKKAKK AKKAKKAKK AKKA KKAKKA AKK (Double OW, OW, OW). It really hurt but I figured, “No Pain, No Gain”  right? 

WRONG!!!

Long story short, from that day forward, 24 years ago, nothing will ever be the same. My life had forever changed. My brain translated the pulsating vibrations as a threat, leaving the soles of my feet to ache, burn, freeze, stab, and just plain hurt.  I no longer count the years, but the memory and the pain are forever etched in my feet and in my heart.

3 years later, Yohan, Gilles and I moved to California and my feet were still killing me. I tried everything, and I mean everything to alleviate the constant discomfort: acupuncture, medication, nerve blocks, psychotherapy, Tens, myofascial release, creams, gels, patches. Nothing worked, so after a lengthy and heated internal debate (the reality of using a wheelchair scared me), I  purchased a custom-built wheelchair.

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Here are just a few highlights from the first year or two:

“Oh dear,”  laments an eighty-something-year-old in the grocery store. As I look up, she was peering down at me, pursing her lips and shaking her head slowly from side to side. “You are just too young to be in that chair.”  Um. No duh, but I am, for now, and by the way, why am I even talking to you? 

“Hey, this looks FUN!” yells a “friend” as he unexpectedly grabs the push handles in the back of the chair and starts to zoom me down the street, swiveling erratically to the right and to the left.  He thought he was brightening my day, adding a little zest to my boring existence. Careening down the street, I was furious with my helplessness, vulnerability, and especially Monsieur Rémy. The guy who was pushing me around? We are no longer friends. He’s dead to me.

“Well, Heeellooooo Sunshine!” singsongs a salesperson at Macy’s. How are you doing today? she asks, enunciating every syllable with exaggerated grimaces which made me wonder if she thought I was deaf and had to read lips to communicate. Then she simply turned to my sister and asked if there was anything in particular “she” needed, referring to me. Oh, I get it, she assumed that I was mentally and physically disabled. You have got to be kidding me. Her strategy: avoid all eye contact with the sitter and go with the stander, the one “in control” and who looks the most normal. Normal must be in the eye of the beholder because on that particular day, my sister, Kathy,  was dress as a blueberry…really. She was drumming up business for her summer business, Island Blueberries. 

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On another note, if you don’t get killed, some of the following situations could be translated as funny…..years after the fact.

This is the real Kathy.

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Kathy, bless her heart, always volunteered to push me around downtown Burlington when I visited in the summer. Going into the mall,  Kathy grunted several times in an effort to get the front wheels of the chair over the seemingly extra tall threshold (bottom of door frame). She pushed once (Heythat was my back!…don’t use your knee!), she pushed twice and the third time….SCORE! The wheelchair unexpectedly jerked over the doorframe with such force that I fell forward, right out of the wheelchair and onto the cold, hard floor!

wheelchair.

That very afternoon, I Googled: manual wheelchairs + seatbelts+ overly enthusiastic sister.

On a different day, we encountered yet another obstacle. The wheelchair ramp to the store in question was short and steep. It looked something like this:

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Going forward was out of the question, so Kathy, with all her might,  pulled me into the store backward. Gravity was pulling me forward (I had not yet received that damn seatbelt). It felt like I was going to tumble out of that chair, and roll into the street. She got me to the top of the ramp and wouldn’t you know it…the bottom of the doorframe was again, extra high (What is it about buildings in VT?)   I pleaded with her to just leave…it was not worth the trouble, but my sister does not back down when facing a challenge.  And she rarely listens to me, so I held on tightly, trying to shift my weight backward. Then I heard 2 employees scream, “WE’VE GOT HER!” and before I could say, “this is really embarrassing“, one woman  helped my sister pull, when the other suddenly appeared in front of me, and started pushing the arm rests to get the  chair into the building. With three people pushing and/or pulling, we made it into the store, but I had had it, I was done shopping for the day.

Today, we laugh when remembering those mortifying incidences, but to those who experience similar or worse situations daily, it’s really frustrating. Here are just a couple of tips when interacting with a person with a disability:

  1. Respect Personal Space-many use mobility aids, so don’t touch, use, lean on or move the person’s wheelchair, walker, cane, etc
  2. Speak in a normal tone
  3. Talk directly to the person with a disability
  4. Ask before you help

More tips to come. Have any to share?

Just an FYI: CMT SUCKS

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 books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link:

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 books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link: http://www.cmtausa.org/101tips

updated-fpss

As for Yohan, he’s more or less become a permanent fixture in our dining room. Every once in a while I’ll stroll on by, dust him off, rearrange the furniture and water the plants. In front of his computer screen, he keeps himself busy with grad school applications, gaming, writing projects, gaming, reading, and did I mention gaming? He’d be perfect at that mannequin challenge which has gone viral over the past month or better yet, he might be able to break the Guinness World Record for competitive sitting (72 hours).

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Looking for Yohan? Look no Further!

The only reason I know he’s still living and breathing is that nasty cough he’s had for the past 30+ days. It almost feels like a game of psychological warfare where he’s trying to make me crack, and all truth be told, he’s succeeded. I’m worn down, my will is broken and I’m more than ready to divulge any and all information I might harbor. Let the interrogation begin!

The last time I checked in, Yohan had been cleared to walk and start PT. His progress has been molasses slow since then. Why? Pressure sores. After a week or two, these sores heal, and as soon as he’s given the green light to resume walking, they break open again. It’s so frustrating!! After surgery and casting, all his hard-earned calluses dropped away, leaving fresh, pink, baby skin. Problem is –  Yohan is 23 years old and he’s totally over the baby skin stage. Like, WAY over.

baby

He’s had a shoe insert made to relieve the force on the pressure spots. And we’ve been back and forth to San Francisco 3 times in the last month to have the orthotic modified, but we are not there yet. Just this morning, that stupid sore reopened, which means one thing: Stay off the foot and get back on crutches. UGGGGGHHHHH.

Yohan will be seeing Dr. Pfeffer next week for a consultation and we’ll go from there. If we can’t take the pressure off that one spot, he may need another procedure on that foot. No way are we delving into the second foot surgery until he is 95% ambulatory with the reconstructed one. We do not know how long that will take and grad school applications have been submitted for a fall 2017 admission.

Yohan does not like surprises. He yearns for certainty and security. We all do. How do you plan your life when you can’t really plan your life? Message from the universe: Shit happens and you just have to go with the flow. You make the best of what you’re given and deal. It’s definitely not optimal, but what choice do you have? CMT sucks.

life

Question: Dealt with foot sores? Share how you managed them!

Surgery is Imminent

Yohan’s Surgery #1 – Surgery is Imminent
June 20, 2016
The Eve of Surgery

 

His toes are curled, especially the pinky toe which begs attention by standing just that much higher to make wearing any shoe a challenge. His crescent arches make walking a balancing act. His calves are as tight as the string of a bow and his ankles are turning out as the supporting tendons lose their grip. Thick, but hard earned callouses are just a bonus for winning the CMT lottery.

CMT is usually passed down from one generation to the next. It is inherited. Yet, neither my husband nor I have it. Yohan is the first person in our families to have CMT. His CMT is caused by a spontaneous genetic mutation. A mutation that can be passed on to his children, his children’s children, and so on and so forth.

Yohan will have reconstructive foot surgery tomorrow morning at 7:00 am, a surgery which has been planned for a year and scheduled for 3 months.

CMT foot

A few weeks ago, in a moment of sheer fear and anxiety, I clumsily suggested that we might want to get a second opinion on the necessity of surgery, a surgery that was only 3 weeks away.

In shocked disbelief, Yohan blurted out, “Are you expletive kidding me? After choosing to put my life on hold for a year after graduation? After all the in-depth discussions and conversations we’ve had?   No way. I’m resolute in my decision. Now let’s get this over with and put it behind us.”

Enough said. My worry asked the question and the voice of reason responded: the surgery is a go. The reality is that Yohan can no longer run, walk with confidence or stand without pain. It’s time. It’s time for an upgrade that only the hands and skills of a competent orthopedic surgeon like Dr. Pfeffer can offer. After tomorrow’s surgery and a 6-month healing process, Yohan’s calves will relax, his pinky toe will align, his arch will flatten and his tendons will be strengthened. Tomorrow brings the promise of less pain and more stability.

Any surgery is risky. And the recovery for this particular surgery is long and tedious.  But the possibilities of a new tomorrow are endless. So, when anxiety rears its ugly head, I am guided by Yohan’s words: Plan for tomorrow, then live in the now. Our brightest future lies in the sound decisions of today.