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Thread: Mark is tied up in red tape.

  1. #21
    Join Date
    Jan 2008
    Mark was the big winner of our parents legacy Todd. We figure he got the ALS from our dad, but none of us have been tested for the gene that can predict the disease. Dad was adopted, and we have no medical history for him. Our mom had Caroli's disease, and that is what affects Mark's kidneys. He isnt a candidate for transplant.

    ALS affects the neurons that send the messages to the brain. My guys have bulbar onset which usually starts in the mouth, throat and hands. Limb onset usually starts in the arms and legs. The first symptom for the guys was facilitations under the skin that kind of look like worms crawling under the skin. When they stop the neuron is usually dead. Mark started slurring his words, and his fingers and hands went next. His progression was a little slower than Mikes.
    "They" say that it does not affect bowel and bladder, but without the use of legs and hands, a cath becomes a necessity, and the ability to push makes bowel care difficult. Mark has a supra pubic, and colostomy. I don't know what Mike will choose.

    Swallowing becomes impossible, and speech goes to hell. The diaphram stops working, and death usually occurs from respiratory failure. The mind is not usually affected, but there are some cases of frontal lobe dementia.(I'm not sure if that is the correct term) Vision is not usually affected, but in Mark's case, the muscle that lifts his right eye lid has stopped working, so we keep that eye patched to avoid corneal abrasions.

    Choosing to go on the vent is not encouraged by a lot of doctors. It is a very personal choice, and having a good support team is essential , but the vent is not a lot of work and should not be feared. Suctioning has to be done some, but both guys have had their saliva glands radiated, and that helps the excess saliva.

    Another side effect is emotional lability. Tears come easily and laughter does too. Couple that with being Irish, and you buy Kleenex in bulk.

    The quality of life of a PALS depends entirely on attitude. Mark never has a bad day according to him. He finds the craziest things to keep his mind busy, and he has friends all over the world. I hope Mike will adapt as well as Mark has. Mark takes care of the families accounts and pays the bills. He does our taxes, and is the family bulletin board. He keeps us all informed on what is going on with all the fam.
    I hope that answers some of your questions, but if you have more, please ask.

  2. #22
    Thank you, Anne, and I echo the members here who adore you, because I'm one of them.

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