ALS, the 1st, 2nd or 34th chapter!

Posted: September 15, 2015 in ALS, drugs, Family, Lou Gherig, medication, Support, Uncategorized
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Today I am in a whole new place. My mate of thirty-two years has ALS. My vital, active mate who goes out of his way to be there for kids, rescue animals and care for me, my home and my yard, may leave me. It is not fair. I am all over the place today. I am grieving, I do NOT want to live another twenty or thirty years without this man. I do not want to deal with my pain, my disease that has already forced me to give up a career and most of my life, without him. He is the only thing that made my pain, lack of life, bearable.

I want to control my own emotions to be there for him, to make it ok for him to be sick, to possibly leave me. I want to be there for my kids and grandkids to make it ok for them.

Then, faster than you can snap your fingers, I am angry. It’s not fair! He is one of the good guys. Why take him and not some drug dealing scum who settles arguments with a gun?

A few seconds later I am terrified. We owe money on the house. How will I pay for it. What about electricity, water, gas, a phone? I will have to come up with money for the property tax and I will be left without medical insurance. I am unable to work due to a central nervous system disease and relied on my mate’s income.

Then I go back to, “I don’t care about the income, I need to keep him with me.” He is a mere fifty-six years old. There are new discoveries and treatments that can fix this disease, but they are mired in Federal guidelines and paper work. Doctors are afraid to try things for fear that the government will shut them down. We need to take the hand cuffs off our medical researchers and move things forward before more people like me have to watch a loved one die too young. One group has proven that injecting a certain protein dissolves harmful protein from brain cells, reversing ALS symptoms, another shows that long-term, high doses of certain antibiotics reverse and stem symptoms. Yet one is not able to start trials on humans for another three years (what the hell) and the other is shunned because doctors could lose their privileges if they prescribe mass doses of antibiotics for off label use. Wrong, wrong and wrong. Treat these people now! If you are wrong, and the treatment is wrong, so be it, they are going to die young any how, but it is a step in the right direction.

 

 

 

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Comments
  1. billgncs says:

    When I had cancer, I found a support group that helped. It helped me to talk to people and families that had been there before. If we were closer, I would offer to assist with driving or
    things like – but we’ll keep you and your family in our prayers.

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