Unlike those many people who suffer from this disease from their early childhood on, I had a "Life before CMT" because for my first fourty years I led a quite normal life: kindergarten, school, boy scouts, university ... then again school – this time in front of the class, working as a teacher, in all for nearly three decades.

Nothing was different from anybody around me – perhaps with the exception that I liked to engage myself, and so in school, trade union, and various political organizations I always very soon had several tasks, functions, and honorary jobs – and I liked it: I was young, and interested, and ambitious, and I felt I had much more power than I could ever spend.

I liked swimming and canoeing and skiing, judo and karate, hiking and camping; with my scout group I biked more than thousand kilometers through Northern Germany; I hitchhiked through half Europe, climbed the highest mountain of the Balkan, crawled through the caves of the Dragon's Rock, and swam in an icy river on New Year's Day; in the political youth movement of 1968 I was engaged from the beginning, missed no demonstration, and helped to found a party, which promised to realize the revolutionary ideas of this movement by political means; as a teacher, I went again to the university in my spare time for five years to qualify myself for the special education of intellectually challenged and maladjusted children to help also them to find their place in our society – I loved the engagement, the adventure, the risk, and the challenge to experience my limits.

CMT announces itself

In my forties some strange things happened which I couldn't explain to myself at first:
  – "Where the heck is your former strength?", I asked myself when one day I found my arms too weak to lift my suitcase up onto the luggage rack.
  – "What has happened to your feet?", I wondered when I sprained my ankles three times in the same year and broke my foot in the next.
  – "Are you already so old?", I asked when I suddenly needed specs, and my hearing impaired significantly at the same time.
  – "You work too much", I thought when I always felt so tired and could not help falling asleep even while sitting at a table with guests.
  – "This traffic has grown too hectic for you", I had to confess to myself after having caused several dangerous situations on account of lacking concentration or slow reaction ...

Obviously I had to take measures: At first I resigned from my honorary jobs – that hurt because since 1968 political engagement had been my life. Then I gave up driving – and learnt how difficult and restricted life without a car can be. And finally I reduced my lessons at school – that meant less income, but we managed to get along somehow.

CMT becomes manifest

At the beginning of the year 1988, short after my 48th birthday, I realized that my toes had been numb continually for half a year, and I noticed that the numbness began to spread into the foot now – it was then that I knew I had CMT.

For several years ago, my mother had had the very same symptoms. At first her doctor had diagnosed circulatory disturbances and treated her accordingly for more than a year. Only when my mother's brother who lived in the USA occasionally informed her that he had his "clumsy feet" now properly diagnosed, and that his disease was a hereditary neuropathy called "CMT", she concluded – and was confirmed by a thorough diagnose later – that she had the same disease, inherited from her mother, who had had week feet, too, and spent her last years in a wheelchair.

So I asked my mother and my uncle for more information. My mother established a pedigree showing seven cases of foot abnormities in the last four generations of her family. From the CMT infos my uncle sent us from the USA I translated the most important articles into German language, and when I finally visited my doctor to tell him about my numb toes, I could provide him with a well filled info file on CMT. He accepted it gratefully, and was honest enough to confess that he did not know anything about this disease. But he studied my file, and when he gave it back to me he had added even more information from his own books.

To be sure of this diagnose, my doc sent me to a lot of specialists to exclude other diseases which might show similar symptoms. None of all the doctors I met in this time had heard of CMT before – this disease was new even to the professors of the Medical University Hospital where I finally spent one week of my Easter Holidays to have a series of check-ups done: EEG, EMG, sensory and motoric tests, and a sural biopsy which reveiled nothing in special but still hurts until today. And at the end I had it in written: I have CMT type 2.

In the following months, my condition worsened rapidly. Soon my whole feet felt numb, then my ankles, and at last the whole lower region of my legs – the nerves in my legs began to decay, they did not receive any sensoric signals, and they could not send motoric signals to the muscles: I could no longer control the movements of my feet.

My doc prescribed ankle-foot-orthetics to fix my feet in the right position, and I had to use a cane to keep the balance. Walking and standing became difficult and arduous, and after a while also painful. Then also my hands became numb, my handwriting became illegible, and everything slipped through my insensitive fingers.

Gradually the pain in feet and hands increased and became permanent at the end. More and more often I had to stay away from my job on account of too much pain. I took painkilling pills constantly now, but the narcotic medicine slowed down my thinking and my reactions so much that I hardly was able to hold my lessons. At school, my overstrained feet swelled in the orthetics, permanently I tripped and often fell, even in the classroom, and sometimes got seriously hurt.

My colleagues exonerated me where ever they could, but after the summer holidays it became evident that I was no longer able to fulfill my tasks as a teacher: I was dismissed the service in november, only eleven months after I had reported my numb toes to my doc for the first time.

Living with CMT

Retirement was a great relief. After having continually felt overstrained and exhausted during all these past years I could live up to my own needs now, and I still do until today: I can sit the whole day at my wide open window because the fresh cold air of our rough northern german climate easies my pain, in total quiet which benefits my decaying nerves, and with my feet high which is the best position for blood and lymph circulation when the muscles do not work any more, and i can choose my activity according to my actual capacity of concentration, or simply fall asleep when ever the fatigue syndrome will overwhelm me.

So I lead a domestic, peaceful life – protected by my wife,
  – who once had married someone totally different, a socially active guy, as sound as a bell and known all over the town, with a lot of interesting friends – and now has a severely handicapped man with rotten nerves and lame limbs and permanent pain – and who still sticks to this guy;
  – who has to refrain from so many things which are quite familiar to others – go out, dance, see friends, go to a concert, take a walk, make a fun trip by car, and any outdoor enterprises at all – and who never complains;
  – who does all the shopping and other errands for me, so that i can stay at home, and sometimes for weeks have not to get into my heavy boots with the ankle-foot-orthetics and leave the house;
  – who administrates our dates, our finances, our correspondences, and all our important matters, because my mind, dazed by medicine, uses to forget things or to mess them up;
  – who arranges our twosome life, in spite of all restrictions, so varied that we feel happy together and don't seem to miss anything.

Having been a hobby programmer and netuser from the early homecomputer days on, I enjoy spending my livelong day in front of that wondermachine, sending emails around the globe, or surfing the web, but mostly puzzling over some new computer program, leant back in my comfortable armchair, feeling a gentle breeze now and then carrying in the odor of the roses which bloom abundantly everywhere in our peaceful little backyard in the picturesque medieval old town of Luebeck ... Ain't life beautiful?

Well, it could be ... if there were not these permanent pains, caused by nerves which are eaten up at their lower end, in my feet and hands, by CMT and crying alarm constantly at the upper end, in my brain. You know neural pains well enough if you once have had toothache: Maddening pains, not to be silenced, penetrating and overshadowing all your thinking and feeling ... But remember: Toothache is caused by just one inflammated nerve, while with CMT there can thousands of nerves be inflammated at the same time – can you imagine that pain? I take morphium now, at high doses; it does not take the pains away, but it lowers them to an endurable level.

I had a rich, active, and engaged "Life before CMT", and I am very happy about that. There will be no "Life after CMT", for this disease, incurable and even progressing, will stay with me as long as I live. So I will have to master my "Life with CMT" – and I am determined to make the best of it.