Guest Author - Wollie Woehler

Although there are a number of types of Neuromuscular Diseases, affected persons find many similarities in coping with the effects of these diseases during their day-to-day living.

Parents with children affected by a Neuromuscular Disease usually have to cope with the traumatic fact that their children will probably not be able to run and play like so-called “normal” kids. I say “so-called” normal kids because many of them also have something which can hold them back from doing things other children and parents take for granted.

Similarity occurs in the ability of parents and family members to accept the child with a neuromuscular disease. I have met a grandmother who accepted her daughter’s baby’s disability due to Spina Bifida, a child born with an open spine, and was preparing her own home to accommodate the child’s wheelchair, ramps, railings and what ever she thought necessary. What a lovely, understanding grandmother! I later learned that she accepted the disability of the child, thus doing whatever she could to accommodate the disability but she could not accept the child. She did not pick her up, talk to it or have any physical contact with the baby.

Children with one, or both, parents living with one or other neuromuscular disease. Some children prefer not to bring their friends home while other kids are so comfortable with their parents that they always feel free bringing friends home. This may differ depending on the life stages of the child. It also call for well-adjusted parents to ensure that the children’s friends feel at home in this “different” circumstances.

Young couples may battle with the idea of having children when there are neuromuscular diseases being passed from parents to children. Questions such as whether to have children of their own, when to tell the partner of this sometimes scary diseases being inherited through them. Will he/she still love me and want to marry me if they know about this possibility of passing some uncurable disease to the children?

The person living with a neuromuscular disease also have health problems related to their disease. Medicine and sometimes hospitalization to undergo operations are expensive and medical aid funds do not always provide fully for these needs. In many instances these diseases go together with ongoing deterioration of nerves or muscles. Each time you loose more muscle strength, balance, or whatever part of the body is affected, it is a new loss. Support groups can play a role in coping with ever decreasing day-to-day functioning.

Another important aspect of dealing with neuromuscular diseases is the financial costs involved. Children may need computers and other aids to enable them to cope at school. Leg braces and finding the right shoes to ware with them, are expensive items. Where children are using wheelchairs, they need new chairs to accommodate their growing bodies.

Many schools, colleges and universities are still not fully accessible to children with wheelchairs or crutches. A wheelchair may be able to go up and down a ramp but for someone walking with crutches it may be too slippery and steep to walk comfortably up or down.

In this Neuromuscular Diseases column we are going to address all these aspects of similarities between different neuromuscular diseases. Doctors and other medical personnel are there to take care of the medical needs of their patients. By sharing our first hand experiences we can all learn from one another.