Chuck Kroeger
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I played footbal in high school and made a lot of trips to the chiropractor. I played soccer and ran, worked out with weights and was very active up until a few months before my diagnosis. My diagnosis came at age 68.
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I appreciate all the information provided on this thread. I was told by physical therapist and neurologist to conserve my energy for things I want to do. suggestion included using wheelchair to go down the hall to the restroom rather than walking. My ALS has progressed to the point that I seldom walk more than 100 steps in a day – maybe as few as 50 some days. I strain to rise up and walk or move to the wheelchair each morning.  I am no longer able to lift my laptop because it is too heavy to handle. Seems everyone I read about is so different, it is as if we all have a different disease. I eat well and have gained back 20 of the 55 pounds I lost while going through initial diagnoses. I do stretch some but don’t “exercise” as such. a few years ago I was training for a half marathon. Now I only dream of a slowed progression. Wish there was clear cut info on RCH-4. At this point (one year into ALS), I am certainly ready to try something other than Rilutek which made me sick.
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I’ve slept in my recliner pretty much full time the past 7 1/2 months. Had some trouble getting out of the hospital bed and I rather enjoy the company of my wife who starts out sleeping in the other recliner next to me before she heads off to bed. I take melatonin and mertazapine along with turmeric each night before ‘bed’ and wash it down with cran-grape juice and ‘clear-lax’. I have never slept well and now sleep a couple hours at a time. I wake up periodically to adjust my breathing nose-piece. I seldom get out of ‘bed’ before 9 and many times lay there relaxed until 10 or 11. I have a long prayer list and spend my last 20-30 minutes talking to my Lord before falling asleep.
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its not the end of the world. take the time to do things you’ve wanted to do – travel to that place you planned to go to, go fishing or to the gun range, spend time with family. I put off doing many of the things I wanted and now 8 months later, I am not able to.  Let your friends know you are open to, and welcome visits and help. Don’t deny them receiving the blessing of helping when they offer. My mom’s cousin gave up and withdrew from everyone. She lived 6 months. I can’t help but think attitude makes a difference.
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I had lost 50 pounds in 13 months so the dietitian was quite concerned. I had been a fit 185 and dropped to 133. I was encouraged to eat a high caloric/high protein diet including Boost or Ensure and chocolate milkshakes. I continue to take vitamins and supplement, assuming excess will flush on through. I have gained 15 pounds in past 5 months, but my back and chest are still bony.
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my initial diagnosis was rheumatoid arthritis with chronic fatigue syndrome and later, after I had lost 50 pounds, I was told I was anorexic.  I had been very active physically and was athletic, and suddenly was weak. I even asked my primary care physician if I had ALS and he laughed and said no. I asked for a referral to Barnes Hospital and they quickly recognized my disease.
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I was diagnosed 6 months ago but symptoms started about a year ago. I check pretty much every clinical trial and do not qualify due to decreased lung capacity of less than 60% and age – I’m 68. At this point I would cherish the opportunity to try NurOwn. I was on Riluzole for a week but the nausea, headaches and fatigue/dizziness were not worth trying to extend my life by possibly 3 months. Praying for a cure.
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besides the routine supplements, I have increased the amount of dark chocolate and almonds that I eat (both are antioxidants), and am consuming more calories and more protein. (I had lost 50 pounds) I have always eaten healthy but have not avoided occasional fries and chips. I was officially diagnosed in May 2019 but symptoms started Oct 2018. I continue to get weaker and now spend more time in wheelchair to conserve energy. I do take curcurmin twice daily . like others, hoping to hang on while waiting for a cure or med to halt the progression.