John Addy
Forum Replies Created
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John Addy
MemberMarch 28, 2023 at 2:21 pm in reply to: Which ALS-related science, research, etc. topic is on your radar right now?Gene therapy is on my radar
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I live in dfw. I’m having a scooter designed for me by numotion contact Tom. If you are interested in this contact l can give you more information
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John Addy
MemberNovember 3, 2022 at 4:43 pm in reply to: Study Suggests a New Spinal Delivery Method Renders Stem Cell Therapy Safer, More Effective for ALSLook for Capsida and Crispr
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John Addy
MemberJune 3, 2022 at 12:12 am in reply to: Genetics, How Does this Knowledge Change Things for You?My maternal grandfather was diagnosed in 1968 and scientists at that time thought it skipped generations. My mom died of brain cancer in 2007 at 68 years old. Then my oldest brother got it and died in 2012. My middle brother got it and died in 2017. Seemed to me that it did in fact skip the generation. Then I was diagnosed in 2018. My gene is c9. The genetic counselor advised us that it does not skip generations. I had to tell our 3 children today that it is a 50% chance they will battle this disease in the future. I’ve had the information for about a year. I hope it was the right thing to do.
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I only have cramps all over my body. They hurt worse in the abdomen. I also have scaly skin on my forehead especially around my eye brows. I have minimal muscles in my hands and arms. I am positive about this because of my faith. I know where I’m going after this so my anchor is in the Rock
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John Addy
MemberMay 12, 2022 at 4:05 pm in reply to: Do You Think You Match the Results of this ALS Survey?Listen to the song “Wonderful Life” by Mathew West. It sums up my views. It’s on YouTube aa well
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My pain is all about my cramps, I have no pain other than that. Sorry I could not be of more help.
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I was diagnosed in 2019. I can not get disability because I do not have enough work credits. Is there any hope for me getting Medicare to help with expenses and services ?
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My grandfather and all his siblings died of this disease and also my two brothers so mine is genes
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John Addy
MemberApril 21, 2022 at 7:47 pm in reply to: I would like to remember those in my family who have lost their battle with ALSThank you Dagmar
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John Addy
MemberApril 21, 2022 at 7:46 pm in reply to: I would like to remember those in my family who have lost their battle with ALSThank you Amanda
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Thank you Dagmar
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Thank you Kathy
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I am in a clinical study and can not do anything without checking with my study coordinator