Guest Author - Wollie Woehler


Neuromuscular Diseases affect nerve and muscle strength. Different types of neuromuscular diseases affect different muscles and nerves. Loss of muscle strength often leaves the patient with varying degrees of deteriorating muscle use. This can lead to mourning lost abilities.

Why a process of mourning?

Unknown by my parents and myself, I was born with Charcot-Marie-Tooth (CMT), a neuromuscular atrophy causing muscle loss due to defects of the central nerves system. As a child I felt weak the day after a long walk or refreshing swim the previous day. The teachers and children at boarding school called me “lazy” and, although I did not understand why I was called lazy when my legs were tired, I accepted their accusations and kept quiet about my jelly-like legs after long and most enjoyable outings.

The first time I had to sit out while the rest of the group ventured up the side of a hill, I felt very sorry for myself. Still young and already not able to climber over large mountain stones, fallen trees, go down or up steep, uneven hill sides had me experience how one can really mourn loosing out on activities no longer possible. Until I realised that a walking stick and supportive arm made all the difference. I no longer sat out on outdoors outings, not knowing that my body was not able to build muscle strength once over-exercised, like people with normal muscles can do. Also not realising that my muscles had to work twice as hard as the healthy muscles of my friends to achieve the same goal. Ignorance can speed-up muscle deterioration as permanent lost muscle strength cannot be reversed when living with a neuro muscular disease.

Being blind I also had to come to terms with the sensitivity loss in my finger tips, loosing the ability to read books, and even my own notes, in Braille. I again experienced that mournful feeling as I was sure that listening to books being read to me will never be the same as having physical contact with the written word through Braille. Today I cannot go to sleep without "reading" a book which is being read on either tape or CD. Although I still miss the pondering on a word or sentence to drink in its meaning while my fingers patiently waited for my brain to tell them to continue reading, I enjoy books and cannot visualise a life without them.

As my eye-sight also deteriorated, the loss of each little bit of sight went down the drain, there was this period of mourning. I did not talk about my muscle or sight loss often, the things people said to try and comfort me when I did not want to be comforted, I wanted to be understood, was hurting even more. Sometimes words are more harmful when a hug or just being there in silence is much more uplifting than all the words in the world. We often experience the same emotions when grieving for a loved one, do not talk, and just be there.

Medical doctors tend to simplify physical muscle and nerve loss sensation: "You are lucky, there is only 15, 20% loss, other people suffer greater loss in a shorter time." They are right of course, other people do have worse situations than me, but I need time to come to terms with MY own loss before I can be thankful for what is left.

My experience of mourning each loss as muscle strength and eye sight deteriorates does not mean that I am the only person suffering a life-changing loss. It is part and parcel of everybody living with a neuromuscular disease. This article is not about myself but includes everyone who has to live with a deterioration of physical abilities. If you do not deal with the least physical challenge, you will not be able to live with major ability loss. You need to spend the time to grieve for what has been lost. The challenge is to get going, research ways and means to keep on living a fulfilling and productive life, but handle the grief first .

How do I cope?

I can again only talk for myself. Adjustments I had to make include:

I find it difficult to eat using large or heavy cutlery, therefore I have a set of light weight knives, forks etc. I know that I may have to enlarge the handle with an external grip that fits closely over the cutlery handles some day in the future, at least it can be done.

Leg braces are now my “external” calve muscles. It was not easy at all to come to terms with my leg braces as I felt that my appearance wood be negatively influenced. The ease of walking, no longer falling over my own feet and forever tripping over almost nothing as I cannot lift my toes from the ground, are benefits and boosters for my self-image.

As balance deteriorates I need a walking stick for stabilization. A walking stick at my age was unacceptable until I experienced the stability and support a walking stick gives.

Velcro took the place of button holes and shoe laces.

To conclude, mourn your loss, accept the challenge of doing things in new ways and hold up your independence as long as possible.