ALS – a disease that happens to other people
 

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ALS – a disease that happens to other people



STAR/JOURNAL photos: John Strachan
(Above) Marlene Roosen and Richard Ducjek who is the Coordinator for the Kamloops ALS Support Group. (Right) Marlene’s friend Myrna. Marlene and Myrna have Bulbar ALS, Richard has Sporatic ALS.


By Do not go gentle into that good night. Rage, rage against
May 21 2007


No muscle nourishment. Literally, the wasting away of muscle.

Amyotrophic Lateral Sclerosis (often referred to as Lou Gehrig’s disease). ALS. The name is Greek in derivation. “A” means no. “Myo” means muscle, and “Trophic” means nourishment.

“Lateral” identifies the area of the spinal cord that is degenerating. As the disease progresses it leads to scarring or hardening or, “sclerosis” of the spinal cord.

Little is known about how or why it starts or how it develops. There is no pill or therapy for it.

To be diagnosed with ALS means that in two to five years you will be dead.

It is a diagnosis that happens to other people, not to those we love.

If you are still reading this, congratulations. Many will have stopped after reading the first paragraph. There is no happy ending to the disease nor to this article. The positive in this story is getting to know the people in the North Thompson/Barriere area who are fighting the disease.

By the way there are 12 people in the North Thompson/Kamloops area that have been diagnosed as having ALS. That is more individuals than those that have been diagnosed with ALS in the Greater Vancouver Area.

Still, their indomitable spirit remains a motivation for us all. Get out and live. Their stories read like David and Goliath. Only, in this version, Goliath always wins.

On Friday, May 11th, I was invited to a party sponsored by Marlene Roosen. Marlene is my neighbor. She has always been the pleasant lady that everyone wishes they had as a neighbor and friend. She is cheerful, friendly and has a killer garden. One day she no longer spoke. Then I found out that she has ALS. The party was a way for people with ALS and spouses of people with ALS to gather, and to share.

They tell stories, they compare notes, they share things which they have found help. Most of all, they share the knowledge that they are not alone. There are others fighting this battle too.

Marlene has “Bulbar ALS”. That means that the first part of her body to be affected by the disease were the muscles which control speech, swallowing and breathing.

A friend, Myrna who has the same type of ALS, has come today. They share their stories by handing notes to each other. Sometimes a smile of understanding passes between them. A smile that conveys what a thousand notes cannot.

Others at the party have “Sporadic ALS”. Its first affect is on the muscles controlling arms and legs.

Richard Duczek has this second type of ALS. Two years ago Richard was golfing. Today he is in a wheelchair. The change has been a “graduation” for him.

He graduated from playing golf to having to use a walker. Next he graduated from walking to to getting around in a motorized wheelchair. In spite of his “graduations”, he feels lucky in that he still has the use of one arm. He can still feed himself and he can direct his wheelchair.

The members of this group would like to help the rest of us understand more about ALS. Marlene, with her best Madonna smile (and a wicked gleam in her eyes) hands me a note. She points out that people really don’t understand ALS. For example, she has hand out cards to give to people she meets, just to explain she has ALS and can only respond with handwritten notes. She gets frustrated however, when she hands the note to people only to get the response, “Oh, that’s nice.” There is nothing nice about ALS.

She enjoys contact, just like any other person. It can take a bit more time but we would benefit from coming to know Marlene and others like her.

I asked family members about how they manage to keep going. One spouse pointed out to me that, you still love the person. What goes on is from the neck down. You don’t go out, you don’t do a lot of “normal” things. ALS takes over your life. What needs to change is the realization that the person you love is there, it is the body that is changing. Another family member put it this way. You change every day. Then you start to get used to what you are doing and then the disease gets worse and you have to change your response again.

When asked about stress the family member smiled and said “no, not any more. I feel at peace.” She said she could understand grace in this situation. If there was something new to adapt to that felt uncomfortable, it was the role reversal that sometimes happens. The parent, who was always in charge, who she could turn to in times of trouble suddenly was fragile. She started “in effect” asking for permission as in; Do you think I could do X, Y or Z?

As I left the gathering I wondered at the richness of life I had seen. Here was a group of friends facing life’s biggest challenge. Yet, if courage and grace were an energy form, there would be enough in this group to provide B.C’s energy needs for a lifetime.

*Next week - Families coping with ALS: What support is available.

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