Month: April 2021

UK’s Peter NEVILLE: CMT Warrior

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By Peter Neville

How should I start? The beginning’s always a good place! Join me on my journey!

 Childhood Struggles

As a child, all the tell-tale signs were there; you know, the not being able to run fast, tripping over your own feet or hanging onto the old rope swing across the river. Yes, I got wet EVERYTIME!

I was also diagnosed with Perthes disease (a condition where the top of the thigh bone in the hip joint loses its blood supply, damaging the bone.) and treated accordingly, with 2 weeks in traction. My leg was set in a cast and weights were added daily in the hospital to pull the joint apart.

At about 17/18 years of age, I spoke with a GP (general practitioner) with regards to my hammered toes. The response was, “We wouldn’t do anything about them unless you couldn’t walk.” It occurred neither to him, nor to me anything more was wrong. 

Apprentice Chef

 I left the field of education at 19 after 3 years working as an apprentice chef in Jesus College, Cambridge University. I evolved within my time here from boy into man and was worked hard by my mentor (sous-chef), but he saw the potential I had. In my 3rd year, the college turned 500 years old and on my shift, we celebrated the new £1billion library; HRH Queen Elizabeth & Prince Philip visited for lunch….. The very lunch I had to cook!! Apparently, I was the youngest ever apprentice in 500 years and was being presented to the Royals in the afternoon.

Early Career

From here, I progressed in different establishments, one that Jamie Oliver’s dad, Trevor, owns. At 29, I was running my own catering business and had 3 different kitchens to run. Several years later, I was diagnosed with carpal tunnel syndrome I had surgery, which made little difference. The odd pot of soup or sauce would hit the floor or occasionally I’d trip. only to dump yet another plate in the bin.

Garden Center

I went back to work for another company and closed mine down. It was an easy little job in a busy garden center. It didn’t change me though and physically, nothing changed either. But gradually, it became apparent I had lost partial hearing. We worked around it for a few months. I got hearing aids….Great! At least I could hear the birds again. Then came the wrist pain again, so back to the GP I went. “I’m sending you to see a neurologist,” he said, somewhat puzzled.

Charcot-Marie-What?????

I walk into the neurologist’s office and offered to shake hands. The next line from her totally threw me: “Can you remove your socks and shoes for me please?” A rather strange request for someone with wrist issues! Looking at my high arches, she pointed out my pes cavus feet. With this, she announced, “Mr. Neville, I’m sending you for a genetic blood test and I’ll see you in 3 months time. I believe you may have Charcot Marie Tooth disease (CMT).” At this point in time, I was 38 years old.

 In the UK, we’re fortunate to have our NHS or National Health Service for which we pay in a national insurance scheme on all earnings. If we have treatments, certain medicines or appointments, it’s all covered.

De Novo or New Mutation

Anyway, the results were in and verified. I’m a CMT 1A mutant, meaning I have the first known case of CMT in my family. I knew nothing about it, knew no one with CMT and was directed to speak with someone at Muscular Dystrophy, UK. Muscular Dystrophy UK has a fantastic advocacy service which is free and many CMTers who have trouble with grants, equipment, etc. MDAUK helps these people in a number of ways. They even helped me with a grant for my mobility scooter! 

Surgeries

Surgery wise, I’ve been quite lucky in that I’ve had toes 2,3 & 4 fused on the right foot. Both big toes have had Jones procedures ( fixing and screwing the big toe so it no longer bends and the tendon is removed to keep it from moving.) I’ve had both Achilles tendons lengthened and one ruptured Achilles tendon I still need to deal with. I’m awaiting surgery where a tendon from my shin will be moved to support my left Achilles.

Peer Support

The Charcot-Marie-Tooth Association (CMTA) was the first Facebook group I joined and decided the UK would benefit from a similar group, so I created the Facebook group – CMT Friends UK – England. We are now 5 years old, with over 1600+ members. I’ve had specialist training in peer support and I’m also about to take a course in adult safe guarding (a framework which safeguards employees from exploitation).

Today, I’m dedicated to helping others as they get diagnosed with Charcot-Marie-Tooth disease. I am able to empathize with their struggles in daily life with simple tasks. I believe we have to push ourselves daily because if we just sit back, CMT wins.  Over the last five years, cmtfriendsuk has made a difference in people’s lives.

I’ve had several people telling me that they no longer feel lost or lonely and have a safe place to rant, ask silly questions (they turn out to be vital) and most importantly of all, be understood. The first thing we say is, “Welcome aboard the CMT crazy train!” We have 1500+ members who have walked in your shoes and sung from the same song sheet.

I have a very close friend who I came across in CMTA Faebook pages around 5 years ago. Sophie was diagnosed with CMT 1A at a similar time as me and now we’re like brother & sister. We both reached out and found each other. Adam Miller is a good friend and admin on cmtfriendsuk. Adam often tells me that I saved him from the pit of destruction. We’re like brothers. 

In fact, I keep myself positive by engaging with many people across the UK with CMT and strengthen bonds with those who are in the shoes I wore 5 years ago. Peer support work is a fantastic opportunity to work with people who are in need of help, a shoulder or a virtual hug. I’ve found that by helping others, it then in turn helps me as I stay focused. 

For newcomers to the group, the most vital information is: “You are not alone anymore!” There are others out there. The best thing to come from CMT? The CMT Warriors! 

Test Subject

On occasion, I’ll be contacted by the local hospitals to be a live model for training purposes of new neurological doctors in training. Each appointment I attend, I’m armed with CMT literature for both patients and medical staff.

About Me

I’ll be 44 in August. I’ve had 7 operations and more to come. I try to live as normal a life as I can with CMT. I go fishing in my spare time and love the great outdoors and fishing (I caught the biggest known fish from the nearby lake, (27lb 4oz) . Last year, my stepson Danny jumped out of an airplane from 10,000ft and raised £520 doing so.   

I also love birds and taking different pictures or videos. 

I live with my partner Tracie and we share our anniversary on April 26, 2021 ( 8 years together). Tracie is my rock, soul mate and love of my life. I have 3 children: a 21-year-old son with mild CMT1A, my princess daughter, 17, who also has CMT 1A and my youngest is 9 with no signs yet. Although they live on the opposite side of England, we often facetime with them. 

My moto in life is a simple one. If I can make one person smile each day or feel better about themselves, then I’m winning in life. 

If anyone wishes to follow me on Instagram please feel free to do so:

            #the_cmt_warrior

I chose the name the_cmt_warrior as felt it fitting for myself as I battle in many ways against CMT and often refer to it as a realm within which we live. We all battle for the long run and a cure for the future to come but until then, we must fight.

One thing that stands out that I did achieve was turning the town purple for purple Tuesday. Attached is a video of me on UK TV about this. Enjoy!

CMT – What are your thoughts? Got a story, suggestions, wisdom to share? I’d love to get to know you and possibly share your story. Write to me at:

elizabetho@outlook.com

Old Man’s Journey with CMT

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By Jeff Dols

My name is Jeff Dols. I am 71 years old and I have Charcot-Marie-Tooth disease. I don’t mean for that to sound like an AA meeting, but it’s just a few basic facts. While it’s not my intent to preach at anyone, a little preaching may be involved.

Some background:

I was diagnosed in 1964 at age 14. The clumsiness, sprained ankles, strange walking gait, hunched shoulders, and spinal curvature were all there but not connected. It was a broken hip from a fall to finally lead my parents to try to find out what was going on. That evolved into a day at Stanford University Hospital Clinics where I sat in an exam/conference room for 5 hours in a thin cotton gown as 5 teams of doctors poked, pricked, measured, prodded, tuning forked, zapped and generally explored. At the end of the day, I was excused and my parents were told I had Charcot-Marie-Tooth disease. I was told a few weeks later, but there were no details except that the disease was inherited, degenerative and had no treatment.

My mother was diagnosed too, but only after a lifetime of being treated as a Polio patient.

At age 16, I looked CMT up in a Medical Dictionary. It said, “a progressive, neuromuscular disorder, occasionally fatal.” So far, the fatal part has proven to be wrong, like so many things about CMT in the early years.

I have been lucky in that my disease is fairly mild. I had a mostly normal childhood and did the things most kids did, just not very well or as fast. There were things I could not physically do and things I was not allowed to do. I was just “a bit off”.

My diagnosis in 1964 gave me the starting point for answers to the question of what was going on with me. I learned I was never going to make a living with my body, so the NFL was out. I figured I better get an education to make a living. My mind is the one part of me CMT has never touched.  While some may  disagree, this is my letter, my life and so my reality.

This letter is not a complaint about my life or CMT. I went on to college, had a 40 plus year career in Sales and Marketing that took me all over the county and around the world. I met all types of people and experienced many different cultures. I would not change any of it. I worked hard, had a good time (mostly), and learned a great deal about myself along the way. CMT taught me how to deal with people and made my career choice ideal.

Now to the point, this letter is about the lessons I learned in 55 years of dealing with CMT.

This image has an empty alt attribute; its file name is in-the-workshop-2.jpg
Jeff in his workshop.

Lessons like,

  • I don’t use CMT as an excuse to get out of things. It’s dishonest and an abuse of those around you.
  • I learned to work around CMT issues because it was the only way I could live my life. Early on, when no one had answers, you had to be creative and make it up as you went along. That ability is key in dealing with CMT.
  • I am not hesitant to ask for help when I need it, but I don’t let people volunteer to help when they think I need it.
  • If I can do something, I will do it, no matter how long it takes. Eventually, CMT may tell you to go find a different way but CMT has probably been telling us that for years.
  • When people stare at the way I walk or at my leg braces or how my hands cramp up at the worst times, I make a joke about it or ask if they are having a bad day too. Not in a confrontational way, but with a smile and a genuine desire to help put both of us at ease and to remove the barrier CMT can be, especially with kids.
  • Treat your doctors with respect, the same respect you show your plumber. You hire either one because they have an expertise you don’t. Treat both with respect until a time comes when respect is not mutually viewed as required. Then tell them how you see things and realize it may be time to find a new plumber.

I am 71 years old now and I still manage an independent life. It’s a more limited life than 20 or 30 years ago but whose isn’t. I make it a point to always look for tools and tricks that make life just a bit easier.

Julie and Jeff in the kitchen!

By tools and tricks I mean:

  • A button hook to buttoning my shirts and pants.
  • A small hook I keep on my key chain for those time when I can’t manage to pull my zipper up. It’s embarrassing to walk into a public restroom with your shirt tucked in and come out with it untucked. Can be a bit drafty too.
  • A sock puller aid to get my socks on and off.
  • My AFO’s allow me walk in a mostly straight line. And I do walk, three to four times week, with my special walking stick to help keep me going in one direction at a time.
  • My AFO’s are great shoehorns too.
  • My Velcro strap shoes save me time, frustration and limits the use of bad words that come out with trying to tie shoelaces.
  • I drop things all the time and to pick them up, I keep BBQ tongs handy. My wife calls them my “Geezer Tweezers”. I have 4 pairs scattered around the house and garage.
  • Soft handled knives and utensils make it possible to safely grip a knife so I can still cook. Yes, I can cook. Soft handled flatware is in the future though.
  • My Kindle means I can read most any book I want without the struggle of turning actual pages. When you spend so much time trying to turn a page, you tend to forget what you just read. Reminder, I’m 71.
  • I love my glass of wine and I found a cork puller I can use. Because of balance issues, I limit it to just one glass and only with dinner. I really miss that second glass though.
  • I still drive. Thank God for all the safety features cars have now. They keep innocent people safe.
  • I type 22 words a minute with 7 errors. Voice to text software is in the very near future.
  • An often-used tool of mine is a large master closet with no exterior walls. On bad days, when things really get to me, it’s where I go to shut myself in and rail at the gods and yell at the top of my lungs. Never mind what words I may use; the neighbors can’t hear me and why would I care anyway.
Jeff and Julie (His secret weapon).

But even with all the helps and the aids, the secret weapon that makes my life work is my wife, Julie. We have been married for 30 years. She has seen the best and the worst of me and she is still here. She knows what may be coming and she is still here.

When I am being an ass, she points out that I am being an ass, not always in the most tactful manner but she has rights and I tend to be “insensitive” on occasion. Remember the closet.

She laughs at me on a regular basis, even when I can’t see the humor. Example, in a furniture store, I got my AFO caught under a piece of furniture and no matter how hard I tried, I could not get it free. Julie laughed so hard I though she going to pass out.

When I do something especially stupid, she will yell, “Jesus Jeff”. She has yelled it so often and so loudly I think the neighbors wonder if I am some sort of demented deity.

Julie always has my back and will help when asked, even when she doesn’t think I deserve it.

Everyone needs a Julie in their life. If you have CMT, the need is greater.

So, the advice I would give kids and families dealing with CMT based on my 71 years of dealing with it:

  • CMT is going to win most battles. The trick is to make sure you lose on your terms. Don’t just accept, fight back and look for workarounds.
  • CMT affects many aspects of our lives, but it will not define who you are unless you let it.
  • As much as possible, don’t let CMT limit or constrain your life.
  • Don’t be afraid to ask for help, but always look to yourself first.
  • I keep physically active and exercise regularly. CMT will rob your physical abilities so do all you can to keep the strength and muscle tone you have.
  • Ask questions of your doctors and care givers. If you don’t understand the answers, ask again. Remember, you’re the one paying the bills and, in the end, they’re all just better educated plumbers.
  • Nurture friendships and make sure they feel free to call you an ass when you need it. If nothing else, it starts a conversation.
  • On bad days, don’t be an idiot and bring everyone around you down. You may have CMT, but the world does not revolve around you. Remember the closet.
  • On the good days, share it with the people who make the days good. They should share the good too.

A life with CMT is a life with lots of twists and turns, roadblocks and cliffs. Deal with them as best you can but always remember, each new issue is a shift to your new reality. Use the tools you have, adapt, and keep moving.

A life well lived is an adventure. If you have CMT, it can be a bit more adventurous but that just means the rewards are greater and the memories more impactful. And when you get older (and you will) and look back on your life, don’t just look back, but turn around, look forward and go see what’s next. The adventure ends only when you allow it to.

Here’s to cures and treatments to come so today’s CMT kids will be the last generation to be challenged by CMT.

Thanks so much to Jeff for his CMT story. It’s full of life experience, humor and common sense strategies. I feel grateful to have been given the opportunity to share his story with the CMT community. There is something for everyone, so enjoy!!

Do you have a CMT story? Would you like to share it? If so, write me: elizabetho@outlook.com I’d love to hear from you!