Find out what’s made me tick for the last 75 years – my autobiography is finally finished

Hi everyone and Merry Christmas:

After 2 ½ years of work, I can’t quite believe that I’ve finished my autobiography, CMT and Me: an intimate 75-year journey of love, loss and refusal to surrender to a disabling disease and that it’s up and out there.  It took so long because I had almost 55 years of journals dating back to 1963 to go through, 103 CMT Newsletters to revisit and thousands of photographs and negatives from family members dating back to the late 1800s to view in order to illustrate the book properly.  I not only write about my CMT but my life as a woman trying to find love and happiness and make a difference in the world because isn’t that what we all want, CMT or not?

Announce w-apple

In 330 pages, I bring to life my family and then what it was like for me to grow up in the 1940s coping with CMT.  No one knew why I was losing my ability to walk like everyone else, why I couldn’t stand still, why I couldn’t run or climb steps. Even when I was diagnosed to CMT there wasn’t much anyone could do about it until surgery was suggested. But that’s just a tiny bit of the roller coaster ride that I’ve been on for the last 75 years.  Going to school in a strange city, trying to find a job, getting married and learning about alcoholism, divorce, depression, designing a home, finding love and connecting with thousands of people with CMT around the world are just part of my story.

More than 200 photographs and graphics illustrate the 35 chapters of the book and there is a resource section that includes symptoms that can be part of CMT.

The paperback is available on and for people using e-readers it is also available on Kindle and Kobo. The ereader version has fewer photos but the text is identical.

I’ve included a small graphic here (above) about the book and ask that you please send it on to anyone you know who has CMT or to those you love. It might help those who don’t have CMT understand what CMT is and how it can affect people. And, if you do read the book, would you kindly leave a review wherever you bought it, especially if you liked it.  And I’d love your feedback as well. It’s not easy to throw your deepest feelings out to the world, but I thought to myself as I was writing, if I don’t tell the truth, I’m not going to connect with the people that I want to connect with and I’m not going to help anyone see that they’re not alone as they cope with their CMT.  I hope you find my life as interesting as I have living it.

From our cozy Canadian den in the trees, I wish you all a very happy Christmas and let’s hope 2018 is a good one.

Until next time,



October mumblings

“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.” –  Marcus Aurelius

Even though I have to drag my legs out of bed and then drag my whole body over to my scooter seat after putting on my slippers with hands that will barely hold the weight of one, I am still extremely grateful that I am alive and able to drag my legs and body about.

When I hear my husband, Ron, moving about in the morning, I’m also very thankful that he is alive and still loves me. At this stage in our lives our greatest fear is that we will lose one or the other of us.  We know it is inevitable that one of us will go first and I am hoping it is me because there is no way on earth I want to breathe without him.


Now for something not quite so daunting: someone asked me how the CMT Niagara support meeting that I held in September went and I have to tell you that I feel it was a success even though I had close to 30 people who said they would come and only half of that number did.  However, we filled the three hours easily by going around the circle and asking people to talk about their CMT and their lives. It was truly wonderful to hear people talking about what they have accomplished in spite of CMT. We also had a young man aged 11 or 12 with us and several people brought delicious homemade cookies, so many I was even given some to bring home.  I gave out some questionnaires and quite a bit of literature on CMT and I also put up a CMT Niagara Facebook page to go along with our CMT Canada page.

I get as many people from around the world asking to join CMT Canada as I do Canadians but CMT Canada is just for Canadians to share information about what’s going on in Canada regarding CMT. Canada has such a small population, only 36 million, mostly spread out along the border to the United States across thousands and thousands of miles from the Atlantic to Pacific that it isn’t easy for us to find each other but slowly people are finding CMT Canada and sharing information.

I hope to have another CMT Niagara support meeting next spring or perhaps a barbecue next summer for anyone in the Niagara area with CMT and their families. I’m not getting any younger and holding a meeting takes a lot out of me and when people say they’re coming and don’t show up it means that I’ve done a lot of work for nothing. My friend Lynda accompanied me to give things out and move about as I can’t.  She is veteran of many, many committees and boards and gave me some sage advice: “Plan for many, expect few.” Lesson learned.


One of the readers of this blog told me that she enjoyed seeing inside my home and I’ve taken a few pictures of my bedroom where I grow a few orchids under lights, keep my collection of strange and animated dogs, (I’ve just found a tiny metal poodle at an antiques show – poodles are hard to come by – the hound, above, is sorrowful, to say the least) and watch a lot of PBS and, sometimes, sleep. It is also my habit to read after I wake up at night to use the urinal. I don’t go to the bathroom because it would wake Ron up and he has a terrible time getting back to sleep so, in the privacy of my own bedroom, I use a very lightweight urinal and he empties it for me in the morning.  However, after taking care of what woke me up, rather than lying there trying to turn my mind off, I open my Kobo reader and read for about a half an hour, usually between 4 and 5 a.m. I’ve read several hundred books in the wee hours of the morning and am now almost finished Sophie’s Choice. I’ve have never seen the movie but want to after reading the book.img_1876


Speaking of books, I am just about to start chapter 31 of my autobiography (CMT and Me) and calculate that I probably have three or four more chapters to go and then I can start the editing stage. I have set a deadline to have it up on Amazon by my 75th birthday on April 16, 2017.  I’ve been at it now for more than two years, and am writing almost exclusively using iSpeak on my Mac computer as my hands have really deteriorated over the last year and a half. My editor says it’s a good read, so I’ll keep poking along. I am enjoying the journey, for the most part.

Does anyone know how to contact the CMT poet, Ann Gasser?  I’d like to use one of her poems in the book and need to contact her about it.

Wishing all of you good health and please consider getting a flu shot.

Till next time,



Going, going, not gone, yet

I can’t even give my body away! Don’t get me wrong, I’ve never tried to sell it, but after my sister’s sudden death, my husband Ron, and I, decided we’d better get our affairs in order. My sister was our power of attorney for everything and the executor of our estate. Now that she is gone, everything needs to be changed.

Thinking that I’d like to be useful up to and including the end, I thought that surely some organization, medical school or teaching hospital would delight in a really well worn CMT2A2 body to study. Boy, was I wrong.

My search began with a call to the mortuary people who will be picking up our bodies when the time comes.

Nope, they don’t even know who to ask but there is a transport company in Toronto that takes bodies everywhere. Call them.

I make the call. Yes, certain places take bodies but the body has to meet certain criteria: no recent surgeries, no communicable disease, etc, etc.

I don’t expect to be dying after surgery but who knows how the end will come. As far as a communicable disease goes, they are far and few between here in North America but you never know what will be going around the old folks home if I check out in my 90s with only a few of my marbles left like my mother did.

McMaster University, that trains many of our young area doctors, said they would take me but upon further questioning couldn’t guarantee that I wouldn’t just be used for regular anatomy studies. My old body is so far from regular that those med students would most certainly be led astray. And, what a waste of a perfectly good CMT 2A2 body!

I feel like my body is akin to a used car with added accessories. Along with one terrific 1942 model they get fused toes, feet and ankles and they can play with the metal screws and staples that hold them together.

Also included are very slim calves with no added padding to get in the way of often stressed out, splintered shin bones.

An extra heavy thigh with added padding and a luxury-style derriere beautifully spread from years of expert sitting is a real feature.

A liver likely damaged from tons of painkillers and heaven only knows what the thousands of acid inhibitors I’ve taken over the years have done to my stomach is thrown in for examination.

My intestines are thickened from decades of constipation, sort of like winter tires with a few bulges here and there.

My heart, the main spark plug, is weak and working hard to keep my ever-cold extremities at a constant just below room temperature.

There is a fault in my electrical system because something is burning across my derriere all the time and down the back of both of my legs.

My hands feature curled fingers that only work part of time but there are great strong fingernails for prying things open and scooping up small things. My thumbs haven’t moved in maybe 30 years…a great study in atrophied muscles. My wrists feature wrist drop and they can have my wrist braces if it makes any sense to show those kids how a simple piece of plastic works even better than surgery.

One thing I do have that is really good is great upholstery. My skin is terrific – hardly any wrinkles at all. Yet.

Above the neck there is only one vocal cord working but it does the trick (is that the car horn?) and my eyes have both had double cataract surgery done on them plus lovely new lens implants. I see well. I guess they’d be similar to windshields.

My headlights are terrific round DDs.

Someone, somewhere once said I had killer eyebrows. Nobody really cares about eyebrows when they are taking your body apart.

What my brain will be like when I finally leave this mortal coil, nobody knows. The doctor looking after my mother said hers looked like lace when she died. I may go the same way if something else doesn’t get to me first.

I guess you have figured out that I’m not too broken up about dying. I don’t want to die in pain or neglect in some rest home but you take what you can get.

I did hope that a good CMT 2A2 body would be of use to someone for research purposes but I guess not in Canada, anyway. Shipping me to the United States would likely be a logistical nightmare, so that’s out as well. I can just imagine the questioning at the border crossing. The customs officer leans over and asks the driver of the hearse: “And what do you have to declare today?” Answer: “One terrific CMT2A2 body for research.” And then the fun begins.

Realistically, there likely are legitimate ways a body can be shipped into another country but I don’t think I can put my husband through the stress. If I could arrange everything beforehand, it might work.

My husband and I bought a double cemetery plot when we were married 34 years ago. It cost us $35. Yep, that’s right, $35. It’s in a lovely old cemetery out in the country and there is a big herd of Jersey or Guernsey cows, I’m never sure which is which, right across the road. It’s our kind of place.

It’ll be a lot easier for Ron to just have me picked up and shipped to the crematorium rather than having to fill out a stack of papers to have my body transported to a medical school somewhere, but hey, you can’t blame a girl for trying.

I love this photo by Paul Alexander of me on my scooter. It makes me feel good.

I love this photo by Paul Alexander of me on my scooter. It makes me feel good.

I’ve always wanted to have, She finally got warm, on my tombstone. I don’t know if Ron will do it but I might just get that done before I go. If I can’t give my old body away, it will at least rest with the cows that I love so much. Maybe Ron will mix my beloved dog’s ashes with mine. I have always said I’d like to go where dogs go. Who knows, I may find out where they go and my journey will continue.

Too bad about the medical schools missing out on a great 2A2 body, though… their loss.

I hope I’m not going anywhere anytime soon but I’ve learned that there is a very thin line between life and death and you never know when the end will come. I’ve always believed that if you can’t be useful, at least being prepared.

Until next time – stay warm.

I begin the new year on my back

What a way to begin the new year: chills, fever, a terrible cough and stuck in bed for nine days not being able to breathe well.
I won’t bore you with the gory details but there are several things I’ve learned that might help those of you with CMT who experience a bad cold or flu. (I had my flu shot back in October and I think what I’m recovering from is bronchitis.)
1) If you think you are coming down with something that will require antibiotics (something not viral), start taking acidophilus right away. Antibiotics kill all the bacteria, good and bad, in your gut and intestines and you don’t want diarrhea as well as whatever it is you have. A probiotic will keep your intestines healthy. I take one every morning sick or well. They are cheap and help keep your intestines functioning well.
2) If your diaphragm is affected by your CMT, coughing for days may weaken it to the extent that you don’t have enough push to blow your nose. If this occurs, talk to your doctor. Your sinuses can drain down into your lungs and without clearing your sinuses, you can really be miserable. I use a spray called Rhinocort (Budesonide) that helps reduce sinus swelling and a continually dripping nose. The only problem with it is that my hands aren’t strong enough to twist the dispenser. I have to ask hubby, Ron, to do it for me every morning. And, too much of it can see a nosebleed. Once my nose stops dripping continually, I designate one lip balm stick to my nose and use it to keep the inner tissues soft and lubricated. There are also products on the market that will open your nasal passages so you can breathe, whether you can blow your nose or not.

My respirologist had me take a sniff test. They do a live x-ray on your diaphragm and can see if it moves when you sniff. This is fine for one or two blows but when you are coughing maybe 50 times a day and night your diaphragm gets worn out. (I used five boxes of tissue with 65 in each.) It weakens. A sniff test doesn’t take this into consideration. I’ve even had my cough reflex conk out. I just couldn’t cough anymore even though I knew there was stuff that needed to come up. In this case suctioning can be done if the cough reflex doesn’t return.
3) This one is for me a lifesaver. Not only does it do away with the fear of having to go to the hospital where the wait is usually a grueling eight hours or more but it means I can control what happens to me when it occurs. Often with bronchitis, my lungs get so congested that I can hardly breathe. I’m fighting for every breath and can’t sleep unless I’m sitting up which is very painful as my neuropathic pain is in my behind and legs and sitting up on wrinkled sheets caused by the automatic bed is torture.
I use a portable home DeVilbiss Pulmo-Aide compact compressor nebulizer that turns the drug, Salbutamol, into a vapor and I inhale it. The vapor lets me breathe more easily and helps loosen the phlegm in my bronchial tubes. At first I might need it four times in 24 hours but the times grow further apart as my breathing becomes easier and the antibiotic (I use Biaxin slow release) begins to work.
Having a standing prescription for antibiotics, that I might or might not use once a year, and that nebulizer with the Salbutamol vials makes all the difference in the world for me. I know when I’m getting sick. I’ve had 70 plus years to get to know my body. I know the signs of a bronchial infection. Having a bit of control over my own body means a lot. For this I thank my respirologist.
4) Being female, my use of antibiotics is always followed by a vaginal yeast infection that itches like crazy (forgive me guys, but it happens). The antibiotic kills everything that keeps a good balance in that area of the female anatomy. The drugstore can supply you with an anti-fungal cream that, when used for three nights, should do the trick.
5) The last thing I do is wipe everything down with alcohol, especially my TV and electric bed remotes and my computer keyboards and mice. My drug paraphernalia is washed or wiped clean and put away for (heaven forbid) next time.
It was nine days in bed. I missed New Year’s Eve and our 33rd wedding anniversary. Then spent three days on the couch and now I’m slowly back at the computer. This is the most typing I’ve done in, maybe, three weeks and I’m heading for the couch.
My dear man, Ron, looked after all of my meals, changed my bed, did the housekeeping as he usually does, helped me in and out of the shower and was there for my every need. Thankfully, for him, I slept a lot. Without him, I’d have been in hospital. We were only rooms apart most of the time but I know I was lonely for him and he kept asking me when I thought I could get up so he wouldn’t be eating alone. After 33 years, it’s not easy being alone, even if it is temporary. And, the longer we’re together, the more we value each other.

I hope I haven’t grossed you out too much but I wish someone had told me about the standing prescription, and especially the nebulizer, years ago when I thought I was going to die, or just drown in bed, trying to get my next breathe.
The good news is that I’ve found the Smithsonian and Oasis HD channels and along with PBS (I’m hooked on Downton Abbey) and our Ontario TVO, I haven’t watched a commercial in three weeks…and my beloved orchids are all beginning to come out.
Stay well,

My answers on questions about hand controls and CMT and pneumonia

Hi Everyone: I guess by now you can tell that I’m not a big time blogger. It simply takes too much energy and usually half a day for me to do an entry. However, some CMT people have been asking me questions and, rather than answer them individually, I have asked each one permission to print their question on my CMT and Me blog so everyone can read my answer. I have four questions on my plate right now and I’ll try to answer two this week.
I’ll only answer questions I have either personal knowledge of or have written about. There are tons of things related to CMT that I haven’t a clue about. And if you want to help out with some useful information to add to my answers, please do.

Hand controls
Q: I have a friend who has CMT. She is looking to get hand controls for her car in the United States. Could you please let me know where can she find information on hand controls for driving. We will be very thankful to you.

My answer: I have used Sure Grip push/pull hand controls for 30 plus years and love them. I’m told, by my mechanic, that they are not that expensive and quite easy to install (under $1,000 total). Mine have lasted for years and I transfer them from van to van as we buy new ones (every 8 to 12 years). Every time I get my automatic ramp checked out, I have my hand controls checked as well. Little adjustments can mean a lot when it comes to fatigue. I also use a quad grip on the steering wheel as my hands are too weak to grip the wheel. There are a variety of hand controls and spinner type devices available and she’ll have to decide what’s best for her. A tip is to ask the dealer if they have someone who already uses the hand controls she thinks will work for her and go for a demonstration and test drive. We’ve shown our van to several people thinking of buying both a kneeling van and hand controls. Go to for the dealer nearest you.

CMT and pneumonia
Q: My name is Pauline (71 years old ) and I was diagnosed with CMT in my mid forties .
I am constantly frustrated by the lack of assistance I get from my doctor whenever I have a question regarding my condition .
Obviously he can’t know everything about every disease so I’m continually having to research information myself .
Over the years I’ve overcome (with help i.e.. calipers (braces) etc.) each situation as the disease progresses but I can’t find out if CMT is the cause of my getting pneumonia almost every time I get a common cold?
It seems to take me a long time to recover and I suspect that I have ‘walking’ pneumonia this time .
My doctor is always reluctant to prescribe antibiotics and I understand why. He also doesn’t like my suggesting it may become worse due to my CMT .
I don’t think he is very happy that I research it myself as he ignores and disregards any information I try to show him.
In all other matters he is a good doctor so I’m loath to change to another.
Is this a common problem?
I was very interested to read your site , you answered a lot of questions for me .
Basically I just want to know about the cold becoming pneumonia, possibly being related to CMT ?
I look forward to hearing from you .

My answer: Hi Pauline: Most of us do a lot of our own research. Most doctors see one, maybe two, people with CMT in their entire practicing life. If you’re lucky you’ll get one who listens to you as you are the one living with the disease and you have the most to gain if you receive appropriate care.
I also am 71 and used to get pneumonia pretty well every time I caught a cold. The cold lasted about ten days but for weeks I felt as if I’d been pulled through the wringer.
Finally, after X-rays or an ultrasound, I can’t remember which, it was discovered that I had, and have had likely many times, lower lobe pneumonia.
The lobes of the lungs go way down into you lower back and it was infection down there that was doing me in. Antibiotics helped clear it up. Tip: Always take acidophilus before, if possible, and with an antibiotic. The drug strips all the good (and bad) bacteria from you intestines and you could end up with diarrhea while on it. The acidophilus replaces the bacteria and keeps your gut in good working order. You can get acidophilus at your health food store.
I finally found an antibiotic that didn’t give me hives or worse. It’s clarithromycin also known as Biaxin in Canada. I use the time release type. My pulmonologist gives me a standing prescription for it and when I know I either have bronchitis or feel that I have pneumonia (my sputum tastes different when I have pneumonia and I usually get checked out because I can’t hear the rattles way down in the lower lobes.) I fill the prescription. I use it maybe once a year but actually went on a four year period of wellness two years ago.
Several years ago, my GP was doing a routine chest tap and told me my lungs didn’t sound right, especially the left one. He scared the daylights out of me. My imagination is a vivid animal…I immediately had lung cancer. An ultrasound was suggested. It turns out that I have a pocket of fluid in the bottom of my left lung that’s just always there. It is not infection and it is there because my diaphragm is too weak to let me cough deeply and I don’t move around enough to get rid of it. To my great relief, my pulmonologist said, “Don’t worry about it, you’ve had it for years and I know all about it. You’re fine.”
I also get bronchitis almost every time I get a cold and it’s not fun. My bronchial tubes get so congested I can barely breathe. Sitting up all night struggling for breath isn’t my idea of living. I cough and cough and eventually, after maybe three days, begin to bring phlegm up, but I still can’t breathe well and am utterly exhausted.
My pulmonologist suggested I have my own nebulizer, which is a nifty little machine that makes liquid into tiny droplets that I inhale. The medication that goes in it is Salbutamol respirator solution and I use it when I can’t breathe well. After inhaling, until the nebulizer reservoir is empty, I can breathe well enough to sleep and with sleep I get well so much faster. It also relieves my tight chest during the day. I never abuse it and always try to go off it as soon as possible but it truly is a lifesaver. He also suggested I lie upside down off my bed to shift the fluid in my lungs and help bring it up. Crazy but it helps.

Before the nebulizer came into my life, I’d have to wait eight sometimes 12 hours in the ER for the same treatment and only have it once. When you can’t breathe without a huge struggle it is frightening and panic only makes it worse. Knowing you can do something about it makes a huge difference. Now, I can treat myself as needed and that relieves a great deal of the fear and helplessness you feel when you can’t control your own destiny. My doctor gets that.

Our ability to cough can also be lost if we cough too much. I’ve coughed so hard and so long for so many days (and nights) that eventually, I simply couldn’t cough anymore. My cough reflex was gone. This isn’t good because the only way you’re going to get that gunk up is to cough it up unless you have to go to suctioning which, I’m told, really isn’t fun except it does give relief.

The antibiotic and Salbutamol mist help your body get rid of the infection and mucous and you eventually have clear lungs.

In my humble opinion and as a CMT person who has had pneumonia maybe 12 times and bronchitis more often, a weak diaphragm, weak chest muscles, inability to move around vigorously and CMT affected nerves can all lead to pneumonia and bronchitis following a cold.
Ask your GP to refer you to a pulmonologist.

From the WWW: A pulmonologist, or pulmonary disease specialist, is a physician who possesses specialized knowledge and skill in the diagnosis and treatment of pulmonary (lung) conditions and diseases.

Pulmonology is classified as an internal medicine subspecialty. Because of the variety of clinical problems encountered, knowledge of internal medicine and other specialties is required in order to obtain certification.
These are my opinions based on my experiences. Your doctor should be your final stop but no harm in making suggestions. You are your own best advocate.
If you’d like to add to anything I’ve said here, please do through Questions maybe addressed to me at

CMT can be a pain

This post is about CMT so if you’re not interested in the disease, or you simply can’t stand one more downer today, please disregard.
I try to keep these posts up beat but sometimes things truly get me down and I’m thinking that they likely get others with CMT down as well. I’m writing this with MacSpeech Dictate so if it reads a little bit different than my usual posts, that’s why.

There aren’t many things that will bring me to tears: the imminent death of my beloved mother and dog, anything happening to my husband or much loved sister, and my overwhelming, ceaseless burning pain, will do the trick.

When I broke down sobbing in the hallway today, my husband asked me why I keep so busy and could I not knock my workload down. I told him that the reason why I work so much is because when I’m working there are things in my mind besides the pain. When I’m not working the pain seems to fill every corner of my mind. Is it any wonder that I fill my days with volunteer work and projects that I love, writing my newspaper column, advocating on behalf of my peers and, in general, being a nuisance to anyone who ignores people with disabilities.

I remember when I read an article that told me pain can be stressful. It was a revelation. I mean there it was, in words, finally. Stressful! Pain is like another full-time job. It is always with you, you are always working on it, you are always dealing with it, your mind is always cognizant that have it, and it simply won’t go away no matter what you do.

I have tried more than 30 different drugs and therapies including marijuana. Some have done nothing and others all have such terrible side-effects that I simply cannot continue to take them. I say none have worked… none but Cymbalta… and it left me with constipation, very little urine output, sweating profusely and soaking wet all-time. In Canada, in the winter, if I’m soaking wet all the time, that means I would be freezing all the time because I’m cold all the time anyway.

Cymbalta cut my pain in half but I simply couldn’t live with the side-effects any more and I truly thought they were dangerous to my body. When your kidneys and bowels aren’t working, you don’t get rid of toxins and, pain or no pain, you’ll get sicker in the long run. I had a wonderful two months on Cymbalta but simply had to stop it.

I wrote about a pain conference I went to early in the summer and how, at that meeting, met two doctors who are studying neuropathic pain. I asked one of them if anything like Cymbalta, but without the side-effects, would be coming on the market soon and he said there could be something in about 18 months. That was about three months ago. I’ll get back to him back to ask if anything has happened in the meantime or is there any other drug.

I also asked the doctor who runs the CMT clinic at McMaster University in Hamilton, ON for a copy of my MRI, which is four years old. It shows that I have a cyst on my spine where my CMT pain starts and that cyst is putting pressure on the nerves. Why he didn’t tell me about this before I have no idea but I am assuming it’s because they can’t do anything about the cyst. I’m going to see if I can go to another neurologists, and see if a new MRI will give us anything more to go on and if anything can be done about the cyst and, in their opinion, will it help the pain. It’s worth a try.

Forgive me for venting but pain is one of the most insidious things I have to deal with in my daily existence and I’m pretty sure it is for most other people as well. I have never been abused or don’t know what that’s like. I have never been raped. I have no idea what you live with when you’ve been raped. I’ve never been a refugee or gone hungry so I can’t experience what bringing to the fore what these things do to a person but I do know what constant pain can do.

There is a book called Full Catastrophe Living, and I can’t remember the author right now, but if you Google the title on eBay or on Chapters you’ll find it. It is one of the very best books I’ve ever read on coping with unrelenting neuropathic pain. The author writes about your pain and treating it in an holistic way because as we all know pain not only affects your body but your mind, your everyday living, your love life, your relationships with friends and family, your social life, work, and how you eat and sleep. In general, it simply affects everything you do.

In the book, the author says when the pain gets too bad just ask yourself, “Can I put up with this as it is now for one more minute, one more hour, one more day?” I have asked myself over and over again today and yesterday. Obviously, I CAN, because there was a yesterday.

Each day, when I wake up, I tried to do the very best I can with what I have left considering that CMT has taken away my ability to walk and my hands are almost gone, I pile out of bed an optimist. I do try to do the very best I can but pain makes life a living hell sometimes.

I just asked my husband what difference it would make if I were dead. He just looked at me. And then I said, “Really, what difference would it make?” The only thing I could think of was that my pain would be gone. When I’m spouting that kind of logic, and it sounds reasonable to me, I know I need help. The difference it would make would be that I would no longer be in pain but, then again, I would no longer be. I would rather be and be in pain than not be so the search continues. Come along with me if you are in pain, as well. Reply to this blog and we’ll see what we can find as searcher in a world where neuropathic pain is something you live with, not something that can be relieved. But that doesn’t stop us from searching for that one thing that takes away our pain, does it? Hope springs eternal.

Thoughts on coping with CMT pain

Last Saturday I went to a chronic pain support group meeting that was more a they- tell-us than a we-tell-them but it served its purpose.

I didn’t stay for the entire meeting because it began an hour late and the room was freezing cold for me. I soon lose vitality in a cold room and I could feel myself beginning to wane into the second hour. I was so cold, I just wanted to curl up in ball and go to sleep.

Dr. J. Henry, Ph.D., a pain research scientist from McMaster University in Hamilton, ON, and his wife, Dr. Kiran Yashpal, are the leading people in chronic pain support in our area. They help form and speak at support groups and they are in touch with everything going on re chronic pain. Thank God for this wonderful couple. No matter how well we cope, we all need hope, and they bring it.

To tell you that I have had neuropathic pain for 20 years doesn’t help you but it might explain why I’m so interested in CMT pain. I feel as though I am sitting in a pile of hot steel wool every day, almost all day. My bed sheets feel like sand and I burn where my clothing touches my behind and the backs of both legs to the knee. My right side is the worst. I use cold packs under my right thigh to dull the worst pain. Other than that nothing works or alleviates the pain. No painkiller, nothing…and I’ve tried more than 30 including ingested marijuana, Sativex, Lyrica, Cymbalta, a nerve block, you name it.

Dr. Henry gave us a list of dos. Most of us may know them but we also know that all of us are in different places with our pain.

Own your pain. It took me a few years to realize that my pain was MY pain. It wasn’t something someone else had to fix. I had to learn to live with it. It was mine. No one could see it. No one else could feel it. It lives with me every day like a mean little cousin I hate. Funny though, when it does go away, and that’s rare, I actually search the corners of mind to see where it went. Then, I celebrate the wonderful gift of a few minutes, hours or days without pain. Once you take ownership of your pain, you stop blaming everyone, you stop expecting someone to “fix” it and settle down to work living with it. No one says you have to stop searching for pain relief but you no longer feel the anguish you do when you think it’s someone else’s responsibility. There’s a certain peace and calm when you make it your own.

Dr. Henry also stressed that people in chronic pain need to get the right information – I’ll add…we with CMT need to find the right information about CMT so we can make informed decisions about a great many things including having family, what type of schooling and kind of work we do, etc. If we know our CMT well, we know what causes us pain. Because we are all different and our pain differs, what causes me pain may not be painful to you BUT if you know what causes your pain, you can avoid it.

Chocolate, tea, coffee, any stimulant, causes me pain. Cold doesn’t help. Stress and anxiety also causes me pain. I can have a nightmare and wake up with the pain surging when I went to sleep almost pain free. I can wake up feeling pretty comfortable, start thinking about something that makes me anxious that I have to do that day and the pain creeps back like a 7 out of 10 carpet of fire. Switch sides of my brain and begin planning a painting and it goes back down to a 2 or 3. Knowing that stress and anxiety causes me pain, I try to avoid it. That’s not easy and that brings me to pacing yourself. This is one of the most difficult things anyone can take on. We are driven or we wouldn’t be doing what we do in spite of our disease. People who are driven rarely pace themselves. They go at things full tilt and love the challenge…deadlines and all.

I don’t pace myself unless I have to. But my body tells me when I have to. It literally scares the SH out of me. I lost the use of my right hand driving. I know why it happened. My hand formed in the shape of the quad grip on my steering wheel. I can drive but I can’t open my hand to do other things. Thank God I’m left-handed.

Many years ago, I lost the use of my fingers typing. For years I used little pencils to make the big middle ones stiff so I could hit the keys with two fingers. Then they wouldn’t stiffen. Time to make an adjustment. I now type with the knuckles of my little fingers moving my arms from the shoulder. It likely looks like I’m playing the carillon keyboard that makes the bells in the cemetery ring.

Pacing myself means I don’t paint using my hands and wrists and then do an entry for this blog or write an article the same day. I have to let things rest and hope that they recover when I give them time. No time…no recovery … and permanent paralysis over time.

We also need information about what type of CMT we have, what we can expect, what we can do for it, what we can do for our pain and what is being done in the world of pain research. Unfortunately, most general practitioners know nothing about CMT. Find an MDA clinic or visit Dr. Michael Shy at Wayne State in Detroit, MI. or Dr. Greg Carter in Seattle, WA. Dr. Steven Baker at McMaster in Hamilton, ON runs a CMT clinic.
Slowly, slowly, we all do our homework. We eventually internalize that fact that, yes, we have CMT. It is incurable. That’s a fact of life for us and we’re going to be taken on an interesting journey because of it.

We may join a support group or log onto an internet chat line and we discuss it with family if they’ll listen. But for the grace of genetics, you ended up with CMT and they didn’t. It’s no one’s fault. It happened. As Dr. Henry says, “Dance with those who hear the music.” If people don’t understand or don’t want to understand, don’t waste your time and energy on them. There will be those who do and they are the ones with whom you can discuss your CMT and CMT pain. We also need to talk to our doctors. The hard part to that is, as I mentioned above, most general practitioners know nothing about CMT and some even go by the old tune that there can be no pain associated with CMT. Pain is secondary to CMT and in most cases caused by something CMT brings about. In my case the pain is caused by degeneration of nerves in the spine.

Trying to find information on CMT and pain is not easy. Dr. Greg Carter in Seattle firmly believes that cannabinoids are the answer, or one of them. My GP won’t even discuss it. I had to go another route and someday I’ll tell you about my journey into growing pot. For now I’ll just say it doesn’t help me.

Another on Dr. Henry’s list was quality of life. We have to try to maintain a certain positive quality of life – pain or no pain- and that isn’t easy. However, after you get over your, “How can I possibly live with this?” period and realize that you will live with it and you’re going to have to cope – you begin to start thinking of how you are going to build a life around your pain.

To cope I don’t do mornings. They are my time to get myself in gear, do what needs to be done to my person and just breathe. I do afternoons for meetings, etc. If the meeting is at night, too bad, unless it’s something I really want to do and then I plan ahead, get extra rest, and don’t plan anything for the next day so I can recover. I also have to dehydrate myself because I can’t get up off a regular height toilet. That leaves me unable to use a public bathroom when I’m out somewhere. Being dehydrated much of the time leads to constipation, stomach upset and a whole host of other problems…even dry lips and eyes. So, when I am home, I drink like crazy, and it helps. My at home toilet is set up with a Versa frame so I can lift myself off with my arms. I’m a pro at hitting the seat in two seconds flat after I get my slacks zipper undone and the slacks down. That takes longer because my hands are so weak.

I sit on cold packs at meetings and try to keep warm by always having a large light shawl in my scooter basket. My hands get tucked under my armpits. My feet freeze. I don’t go a lot of places where I have to sit for a long time with my legs down. I’ll leave a meeting before it’s over if I’m getting worn out.

Exercise helps build the endorphins in my brain against pain. Hubby, Ron, and I work out three times a week doing resistance exercises together. They keep my right shoulder away from the surgeon and my back hurts less when I’m at the computer if I exercise regularly.

I try to laugh. America’s Funniest Home Videos break me up especially the dog parts and a good fart joke makes me dissolve in laughter. Must be my old English background…all that pub humour.

I don’t do much guest speaking anymore because it stresses me out too much. When I know I have a guest speaking engagement coming up I also know I’m in for weeks or months of extra pain.  As soon as I wake up in the morning and think about it, the pain caused by anxiety comes flooding in and it stays there all day. Accepting a guest speaking engagement is like accepting painful punishment. I’m fine once I’m on stage, it’s the anxious days and weeks leading up to it that do me in.

I also don’t put up with people who sap my energy any longer. Recently, I excused myself from a conversation because the man kept telling me the medical profession was out to kill him and had been for years. I can’t help what he thinks but I do care what he does to me while he’s acting out his tirade. Maybe it’s part of maturing but I no longer feel bad when I save myself from someone who is verbally abusing me, whether they know it or not.

There is more to Dr. Henry’s list and someday soon I’ll talk more about CMT pain but I’d love to hear from any of you who are in pain. Share your CMT pain through the comment box on this blog and we can all learn.