I guess I'm not exactly sure why I'm attempting to write this description of "the way" John did things. That he suffered from muscular dystrophy is certainly no secret. That he moved and walked and even sat differently than many people is no mystery. John himself was very interested in "his" disease. One of the foremost authorities on M.D. worked and researched here in Salt Lake City. (Supposedly there was an unusually high rate of M.D. in Utah----possibly due to intermarriage, polygamy etc.) John participated for many years in different studies, experiments, tests, medications---just run of the mill guinea pig stuff. John took part in many of these projects before the very large Muscular Dystrophy Association and Jerry Lewis were around. John would be very interested in the information I just received in the mail today, January l5, 1993. In a newsletter from MDA...

LIMB-GIRDLE DYSTROPHY LINKED TO TWO GENES
MDA-funded investigators have confirmed that limb-girdle dystrophy can arise from at least two different genetic defects, one on chromosome 15 and the other on chromosome 5. The chromosome 15 form appears to be recessive, meaning the genetic defect has to be inherited from both parents for a child to show the disorder. The chromosome 5 form, however, seems to be dominant, meaning that a single defective gene can result in symptoms.

When John would get up out of bed he would separate his legs so he looked as if he were trying to do the splits. Then he would twist and scoot one foot at a time inward until he was standing upright. (I think it was about as hard for John to do this as it is for me to try to explain it!) If it was a bad day for John, his alternate method for getting up was to turn around and face the bed and hold on to the headboard and push up into a standing position.

He would dress by leaning back on his desk and using the back of the chair for balance and/or leverage. He would then come into the hall and use his drawer (about shoulder height) to hold his arms up for him while he put on pull over shirts.

He would then get his socks and throw them from the hallway into the living room so they landed right on his chair. He then went into the bathroom. He had an electric toothbrush and with his free hand, he would help support the hand with the toothbrush in it. He also combed his hair and washed his face using this same method.

John then came into the living room where, when he got directly in front of his chair, he would literally fall into it. If he sat in a chair that was hard or unfamiliar, he would back up to it and sort of bend over until his seat almost came into contact with the other seat and then drop that short distance.

When standing or walking he would put one hand into his pocket and hold onto a handful of material for support. (It's surprising how much this helps, try it.) His most famous stance was his crossed leg resting position. He would cross his left leg in front of the right leg, locking the right knee behind the left leg. He said often that this was very comfortable for him. He stood with such a sway back that many wondered why he didn't have back trouble. He never did though.

When coming up a set of stairs, he would always want the railing on the left and he would start by putting his right leg up a stair and off to the right and then lean left into the railing and get the left leg under him and then slide the right foot in. Coming down, if he felt good, he would put one hand on the railing and one on the wall or person on his left and go down one step, get set and go down one more step etc. If he was weaker that day he would back down. This he did by putting his left hand on the railing and his right hand on his right knee. He supported himself on his right knee while he was putting the left foot down another step. This was quite efficient and could look like a rocking motion once he got going.

Now to the crawling part. Not on all fours but rather on all fives. Often John would move his arm from one place to another by "walking with his fingers." If he wanted to reach up high then he would sort of swing and throw his arm up as high as possible and then "crawl with his fingers" the rest of the way up. This worked also as he would go to reach things on his desk. Even in a sitting position picking up his arm to move it from one place to another was very difficult. This method of crawling or walking with his fingers came to appear almost natural. (This "crawling" thing is what ultimately gave John the information he needed to finally mention to me that perhaps I ought to see a doctor about my chances of having M.D. also. After spending time with me back east after not seeing me for a year, he said that watching me was kind of like looking in a mirror. I guess he noticed me finally starting to use some of the same compensatory movements he had noticed in himself. On a happier note, once I did see John's doctor, it was his opinion that I would be debilitated by old age before I would be by M.D.)

I really don't mean to be flippant or disrespectful about the way John did things. I, on the advice of my other older brother Lynn, include this information because it is interesting and John's struggles with moving were a very big part of his life.

John realized he did things differently. I even remember a joke he told on the subject of being handicapped. (By the way, he hated all those euphemisms for handicapped----but none more than "handicapable.") Anyway, the joke was, "Hire the handicapped---they're funny to watch!"

John wasn't funny to watch--- he was just fun!