Hand-saving ideas (part one)

To answer Nathan Miller, who has CMT, regarding how he can plan ahead because his hands are getting weaker and how he can prepare himself for a future living alone, I’ll do a two–part article.

 

First, though, let me say that not everyone who has CMT will develop weak hands. My mother died at age 96 and her hands were incredibly strong until the day she died. At 70, I can barely hold a fork. We both have/had CMT2A2.

The hands pictured are mine. They do not hurt; they just don’t work. I have feeling but very little movement. If you’d like to send pictures of your hands for this blog send them to my email: linda@lindacrabtree.com and please make sure they’re in jpg. format. 

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I cannot open or spread my fingers willfully. I can open them with my other hand. My thumbs are both paralyzed. This is sometimes described in the medical books as a “clawed” hand.

 

I’m going to list what I’ve thought of and ask that those of you who read this to add to my list by writing to this blog. Include a solution, if you can.  An occupational therapist (OT) and/or physical therapist (PT) can be helpful only IF they know and understand CMT. Otherwise their advice could be harmful.

 

Using your thumbs to text many times a day could wear out the nerves serving the muscles. How many do you send in a day? Think before you whip off a text.

 

Typing all day on a computer keyboard or any other machine where your fingers are constantly used could also wear out the nerves serving your finger muscles.

Learn Dragon Dictate so computer work can be done verbally.

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I cannot open the fingers on my left hand but if I push down they will spread. I have 1.5 pounds of grip in my left hand, which is very little.

 

Try various pens at your local stationery store. I use Uniball Vision (fine tip) pens and the ink flows easily compared to regular ballpoint pens. But, no matter how good the pen, I can only write for about 20 minutes and then all strength to hold the pen is gone.

 

Use an over of the ear telephone device – so you don’t have to hold a telephone for any length of time. A Bluetooth would work.

 

Invest in a KOBO, so you don’t have to hold books.

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My right hand looks fairly useless but using both hands together, I can do many things.

 

When buying electrical appliances such as TVs, heaters, vacuum cleaners, electric blankets, a stovetop, oven, dishwasher make sure that they all have either touch or pushbutton controls. Knobs can be very difficult to turn as fingers become weaker. Always try the controls on appliances and electronic devices before you buy. Even a refrigerator with a magnetic door closure can be difficult to open if hands are extremely weak.

 

Find an electric can opener that really works for you and use it. Perhaps some readers can suggest a really good one that doesn’t require fine finger dexterity or fishing the lid out of the can.

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Nothing moves the fingers on my right hand unless I open them with my other hand. I have .5 grip in this hand which means I can’t even pick up a fork. I have no opposition between forefinger and thumb in either hand so no grip or pinch.

 

Search out easy to open food storage containers and use them. If they are also microwave safe you don’t have to transfer food from plastic to glass.

 

Look for clear, light and easy to lift Lucite mugs, glasses, plates and bowls. They not only look like glass but display the beauty of the food you are eating.

 

If knives forks and spoons become too heavy to lift, look in your local grocery or dollar store for cheap, light, plastic eating utensils. It’s up to you how fancy you want to go. I have a collection of antique coin silver spoons. They are so thin they are almost weightless.

 

When buying pots and pans look for the lightest ones available. Try to find pots with handles on both sides so you can use two hands to lift them. Dropping a hot pot full of food can be discouraging as well as dangerous.

 

Consider eating soup, stews and other thick liquids out of light weight mugs that  can be put in the microwave.

 

Figure out how many seconds to add to a microwave time so that the handle of the mug always comes around to face you when you open the microwave door. For my microwave it’s 6 seconds. This means you don’t have to reach in.

 

Fill small pump bottles with liquid hand soap and liquid dishwashing detergent and keep beside the sink. This will do away with the need to bend over and try to lift heavy bottles every time you wash your hands at the sink or do dishes, if you don’t have a dishwasher.

 

If you don’t have a dishwasher think about getting one. They not only clean your dishes better than you ever could but help eliminate dropping and breaking wet dishes and the possibility of cutting yourself.

 

Decant liquids purchased in heavy big bottles into smaller more manageable bottles. I’m thinking of wine, alcoholic beverages, fruit juices and mouthwash, shampoo, conditioner, liquid shower soaps.

 

Keep surfaces easy to clean and free of clutter. This will make cleaning and dusting easier on the hands. An air cleaner on your furnace or in your room will cut down on dust and housework.

 

Consider something I call the “slide factor “ when planning a kitchen. Often when your hands are too weak to lift something if you can slide it to where you want it to be you’ve got it made. For instance, I can slide a pot with water and an egg in it from the sink to the stovetop without lifting it. This is so much safer than trying to lift everything with incredibly weak hands.

 

Hardwood floors will eliminate the need to run a vacuum, which can be very difficult for people with weak hands and bad balance.

 

For bed making use a duvet instead of a top sheet and you can simply pull up the duvet, straighten the pillows, and the bed is made.

 

Use pull chains on lamps, especially lamps beside your bed or any place where they are difficult to reach. Twist knobs can eventually become impossible for people with weak thumbs and fingers.

 

If doorknobs become impossible to use because you can’t grip them, look online for a child’s door opener. It is a piece of rubber that goes around the knob and has a string attached to it. You can also wrap a knob with elastic bands or friction tape. If money allows, replaced knobs with lever handles that can be operated with any part of the hand or even your elbow.

 

My next list, tomorrow, will address personal items.

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Nathan’s story and request

I am Nathan Miller, 41, who was diagnosed with Charcot- Marie Tooth Syndrome (CMT).  I have a Bachelor of Science in Social Work. 

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I only share this profile and details for informational purposes and not for pity. 

Looking back, I often wished that I had more information as to the limitations and the abilities of one who has CMT.  I think that it would be fortunate at the time of one’s diagnosis with CMT to arm himself/herself with an holistic base of knowledge regarding this disability and abilities at the point of the person’s life, as well as over the whole lifespan.  It would be important to know what tools at different life stages one might need to arm himself/herself, so as not to be publicly embarrassed.  For example, there have been a few times where I wondered whether I was going to be able to button my pants, zip my pants, or get these items undone for restroom purposes, as well as dressing and undressing.  I am unaware of the tools out there to help me, as well as where to look for these items.

I am a social worker by trade, but I am currently between jobs and looking for full-time work. 

It’s important to note that even though the United States has made some significant progress with the area of workers with disabilities, more public awareness is needed, as I have had to work in environments where I had to climb stairs on a daily basis, even though climbing stairs is a chore now. 

Also in the area of disability law, it’s unfortunate that even survival of the fittest becomes the rule when supervisors are faced as to whom they will let go.  It’s a lot easier to let someone go if they can always file for disability, than a worker who isn’t disabled.

I was born in January of 1971. My father was in the U. S. Military.  Because CMT was seldom heard of in the 70’s, I always tried to be competitive in physical education and activity against my peers.  Trips and falls, foot drop, and exhaustion for no explanation were commonplace for me. 

At a young age, I often noticed that I had difficulty holding a steady hand when it was most required, little fine motor coordination, and difficulty handwriting, carrying fragile things or things that could be spilled. 

I often thought I was just like everyone else.  However, I noticed at a young age, as young as second grade, that I didn’t run as fast as others; I often got ankle sprains, eventually got clawing of the toes (hammer toes– which became more pronounced by the age of 13 to 14).  I tried as hard as I could at physical activities but often thought that I had to accept that I was just different. I didn’t have an explanation for what was wrong with me. 

In 1982, at the age of 11, my brother was diagnosed with Hodgkin’s disease, cancer of the lymphatic system.  It was shortly afterwards, not knowing he had CMT, he was prescribed the drug, Vincristine, which had an adverse affect on him. He went from being a high school football player, to falling more, then to crutches, to a wheelchair, to an electric wheelchair, to bedridden, and then nearly died.  He was on a ventilator and respirator. He eventually made it through the ordeal, was cured of the cancer, and walks again with the assistance of ankle-foot-orthoses.  It was at this time, that all of my family members were tested to see whether we had the CMT that my brother had.  We found out it was passed through my father, down to five out of six of us children.  My mother didn’t have it. 

Looking back on my life, had I known all of the problems that I experienced with CMT, I probably would have wanted to request a doctor’s order to have me taken out of physical education right away.  I was frequently exhausted the remainder of the day due to overexerting myself to do well in physical education.  By the time I was a freshman in high school; it was suggested that I visit a physical medicine and rehabilitation specialist.  The nearest doctors at the time were at U. C. Davis Medical Center in Sacramento, CA.  By this time, I had suffered foot deformities and hammertoes. The doctors at U. C. D., fitted me for short leg ankle foot orthoses, and referred me to a podiatrist.  I was also given a medical note to immediately withdraw from physical education at high school.  This was quite a relief for me due to extreme difficulty of the demands, exhaustion, and breathing problems (I’ve had lifelong sleep apnea).  In a month, I received the orthoses and within six months had seen the podiatrist and had surgery on both of my feet —  they operated one at a time, let the one heal, and then operated on the other.  After about a year of surgeries, castings, and healing of the feet, the podiatrist then fitted me for foot orthotics.  To prevent tripping, clumsiness, and the weight of short leg braces, I was thankful to go down to just the foot orthotics.  To this day, because of the weight of the ankle foot orthotics, and the fatigue of having CMT, I only use foot orthotics and not the ankle foots orthotics (AFOs). 

I have difficulty walking in snow and ice with the AFOs.  If others haven’t been around when I’ve fallen, I often fear how I’d be able to get myself back up.

Work Life:  This area has been unpredictable due to exhausted fingers and mobility.  Climbing stairs and clumsiness continues to be an issue for me; however, this past year, I have noticed a significant decrease in my hand mobility, strength, and adequate strength for activities of daily living: dressing, buttoning, and zipping of clothing and walking. My gripping is getting worse, as holding a toothbrush, a pen, writing and typing are all becoming significant chores. Sometimes, I don’t know whether to exercise my fingers and hands, or save the strength in my hands for activities later in the day. 

I often wish I knew what to arm myself with for prevention– dressing, buttoning, snapping, and knowing which type of activities to proceed more moderately or assertively with due to the lack of predictability of the CMT. 

I write you, Linda, to know where I can get help and products that would help arm me to be more independent as my CMT progresses.  I know that it can vary among individuals with CMT; however, we all share similar features and issues. 

I know that we as a team of individuals with CMT, we shouldn’t fret about it or predict how this disease will take its toll, but hold our heads high in stride as we face our days of challenges we embark; but, you and others that have the maturity of having already been through my life stage might know how we, of the younger generations, might plan ahead, and not be surprised when things take their toll. 

Knowledge and preparation, as well as knowing what products and resources are out there can be beneficial. I’d also like to know if teams of engineers are developing future needed products that can make living with CMT easier. I appreciate your carrying on this site and the education materials for future generations that might deal with CMT. 

Sincerely, Nathan Miller

Linda here – My next post will be a partial list to help Nathan and I’ll post another on Thursday to finish my ideas. Please feel free to post to this blog if you have  recommendations along with solutions.  

Sisters in CMT

So alike, so far apart: sisters in CMT.

As soon as Iveta came through the door, I knew we were kindred souls. I noticed the unsteady walk right away.

Iveta standing

The crutch on her left side told me there was likely a balance problem so common with people who have CMT. She smiled and her huge eyes seemed to be asking are you like me, are we the same, how will you react to me, will we be able to talk?

Immediately I knew there was so much in common between us. One look at her hands and I knew she had to learn to cope the same way I do.
A little about my guest from afar: Iveta (pronounced Eveta,) Leipa, 45, is from Liepaja in Latvia. Leipaja is on the west coast of the country very near the Baltic Sea.

When Iveta was born, her father, who had problems with his hands and feet, noticed that there was something wrong. Her feet weren’t right. There were similarities between his feet and hers. Her father’s maternal cousins also have CMT, both male and female, but no one knew what it was.

At 10 months, Iveta began walking and did a lot of tripping and falling. She simply kept going. Her parents sent her to a regular school and for part of her elementary school experience she was teased terribly due to the way she walked and her apparent clumsiness. “They made fun of

Agra and Iveta

everything I did. Even my eyes were too big,” she said through her friend and interpreter, Agra Vagners, a special education teacher from Toronto.

At 33, Iveta went to university as a mature student, studying the Latvian language. She graduated after seven and a half years with her master’s degree and a specialty in editing.
She told me she has always worked and she has take on jobs in offices doing accounting, dispatch, for the local phone company, in statistics and on a computer.

I had also known that she was a poet from our previous talks on e-mail and I asked her how that came about. She told me that all of her relatives had said that ever since she first opened her mouth to speak, she spoke in symbols and rhymes. She’s been putting words to paper since she could write and has kept her work from age 14. She’s been published in the local press and across Latvia since 1993 and does “read- alouds” and poetry for children’s workshops.

Does her poetry talk about her life with CMT? Not directly, she said, but there is a lot in it about feelings and emotions. Several of her poems were translated into English for a muscular dystrophy event and the words have become lyrics for songs.

I had to keep remembering that Iveta does not speak or understand much English but thanks to our mutual CMT bond and Agra’s excellent understanding and ability to translate both English and Latvian, we nattered on for almost three hours.

The first thing on the agenda was the obvious: our hands and feet.

Our hands: Iveta's left, Linda's right.

We both could see that our hands were alike. Our fingers are curled and clawed, unable to open fully and partial paralyzed and our feet either fully or partially paralyzed. We have both had operations on our ankles and both have had toes fused so they wouldn’t curl under. Walking on curled toes is extremely painful.

Comparing CMT feet

When I took off my boot, I showed Iveta the skate hooks on it that allows me to do and undo them very quickly and passed the boot to her to show her how light it is. Custom-made boots don’t have to be heavy, clunky things. When the right boot maker works for you, he can use fiberglass, cork and thin leather to build what you need.

We discussed how we managed. Iveta can still move her thumbs which makes daily functioning a bit easier for her. My thumbs are paralyzed and Iveta said that was likely something in the future for her. She has had tendon releases to uncurl her fingers so she can grasp the steering wheel of her car and drive. My fingers open with a shake or help from the other hand. My left hand fingers are more open than my right that has folded because I use it for my quad grip on my steering wheel. My right hand is great for driving but not particularly good for much else. I use hand EZ Grip hand controls to drive. Love ’em.

Iveta mentioned that she has had the button on her automatic transmission shift disengaged so she didn’t have to push it in with her thumb every time she put the car in drive or park. I didn‘t know that could be done. She also said she still drives with her feet as she feels confident that she can get her foot from the gas to the brake fast enough to avoid an accident. She has an extra wide brake pedal so she can’t miss it.

I also gave my two visitors a tour through our home. I designed the house back in 1988 when I could still stand and walk a little but, now that I can no longer walk, it has turned out to be fine for driving a scooter in as well.
In every room there were questions. What kind of cutlery do I use? I showed her my lightweight coin silver antique spoons and the little tool normally used to spread frosting on a cake that I use for taking eggs out of the frying pan. A regular lifter is far too heavy for me.

What was that on the wall over the sink? It was my wall mounted Swing-Away can opened. Iveta has a counter top can opener that her father has adapted so it doesn’t move around as she uses it.

In my bedroom, we also discussed the light, plastic urinal I use at night so I don’t have to go into the bathroom and wake up my husband. As it fills, the urinal gets heavier, so I’ve adapted it with a long strong cord that goes through the urinal handle and around my neck. With the cord holding it, I can use both hands to hold the urinal and not worry about dropping it.
In the bathroom, we talked about the loop of binding tape I have sewn into my slacks that goes over my head to help me pull up my slacks when I get up off the toilet. If my slacks fall down around my ankles, I can’t lean over to pull them up. The tape keeps the slacks around knee height and I stick a finger through a belt loop and can pull them up.

When Iveta asked me through Agra how I wiped my bottom, I thought Agra would sink to the floor. You don’t often ask a comparative stranger how they take care of intimate chores but when you have CMT and very weak hands, wiping your behind can be a real problem. I understood her question and how important it is to both of us.

No one wants to lose their independence and losing the ability to perform basic hygienic tasks can be devastating. I showed her how I am able to hold the toilet paper with my left forefinger and thumb running the paper along my thumb and using part of the heel of my hand to do what needs to be done. I also thought to myself as I did, how much I hope I never lose my ability to do that.

We discussed hand-held toilet paper holders and the Japanese made TOTO toilet that washes and dries you, but neither is as a good as your own hand. Being able to feel what you are doing and where you are doing it makes a big difference.

We laughed over the fact that Iveta has jump rings one everything: her purse, her wallet, everything. I showed her the ring on my pants zipper and I knew that everything I own with a zipper also has a jump ring on it. If we can’t grasp something between our forefinger and thumb, we can slip a finger through a jump ring and pull. I also use an old-fashioned buttonhook to do up buttons but ever year the number of garments I’ve bought with buttons on them has decreased to almost nothing.

When Iveta was diagnosed at age 20, it was the first time the rest of her family had heard of the disease, even though many of them had it. This happens with many families. CMT is a common, inherited progressively debilitating neuromuscular disorder. It is estimated that one in 2500 people are born with it. That’s just as prevalent as multiple sclerosis. Pretty well everyone has heard of MS, almost no one has heard of CMT.

Three hours went quickly, we took more pictures, and then it was time to part. I was getting very tired. Talking does me in because my diaphragm is partly paralyzed. Excitement and emotion mixed with constant talk only adds to the fatigue. I hate that this happens because I’d like to go like the Energizer bunny but at 68, I have to take into consideration my limitations or I’ll get weaker and weaker and someday I won’t be able to talk. I know whereof I speak. For two and a half years in the early 90s, I could barely get a word out. My left vocal cord wouldn’t work and my voice was a double, scratchy mess. I had an Ishiki laryngoplasty done where a small silicone wedge is put against the paralyzed cord to push it against the working one. You think blowing air through vocal cords that don’t touch isn’t tiring? I hope you never have to find out.

Visiting with Iveta made me look at my own CMT. I don’t often do that. I just get on with it. I don’t worry about what people think about the fact that I can’t walk and use a scooter or that my hands aren’t normal. I’ve come to grips with my CMT. It’s part of me. You want me? You get my CMT.

I’ll think of Iveta climbing up to her fourth floor one-room apartment in Latvia and rejoice for her when she gives a poetry reading in front of her admirers. I wish her love and laughter and all the happiness in the world.

Whether or not we can understand each other’s language doesn’t matter.

A goodbye hug

Iveta and I will always be friend in CMT. We’ll e-mail each other from time to time but most of all we’ll remember the hugs that came so easily – one sister with CMT to another.

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.