October 2018
Dear PALS and caregivers.
We have always been so opposed to medications, that when a caregiver asked me about this drug a year or so ago, I gave my standard answer that all drugs are toxic. That may be true, but Kim has gone through months of being on drugs and although we are working out way off the drugs, they have saved his life. Most we have eliminated, but one heart med for a bit longer to keep his new heart pumping correctly and a blood thinner, again we hope for only a short amount of time. Kim has made some significant improvement in September, even played a short round of golf last week. Can't say he played well, but he did it. He continues to work on his therapy to help his balance and has an appointment on November 15 to get a cochlear implant.
Also, yesterday, 10-1-2018, he had a stem cell therapy. We have always felt like the body needed to be clear of toxins before that could be done and our local doctor here does them for a very reasonable price. We will let you know next month about the improvement he may be feeling. Our doctor did say that some feel improvement right away while other don't feel the improvement for 3-4 months.
April 12-2019. Update on the stem cell therapy that Kim did: He had no improvement from the treatment he had. We understood them to be stem cells from a placenta that was donated by a mother, but later learned that that may not have been the case. He was to return to get another stem cell treatment in 3-4 months but we were in Yuma, AZ at the time and it was too cold to be in Idaho. They indicated that it could take 3-4 months to see any improvement, but since we didn't see any, we didn't go back for another treatment.
Now the information on Neudexta.
The following information is from Deborah Wotherton, a very scientific lady in north west Canada who lost her sister to ALS. You can google Nuedesta and research the information on it. A very low dose may be helpful to PALS.
Nuedexta information by Deb Wot
I think this is very important. My sister had bulbar ALS, and the research consistently shows it to be a more aggressive form of ALS. As per this summary of a study on how ALS affects the brain, "Patients with bulbar involvement, meaning problems with swallowing and speech, were especially prone to have worse scores all round."
I absolutely recognized during my sister's illness that she lacked her reasoning skills in addition to the inability to control emotion. For example, when we found a doctor who did tests that found a bunch of problems, but it was obvious that we needed to seek a wider range of expertise, and at this point we knew about how our cousin's had started to have motor neuron problems and the doctor they worked with to fix them, she just never did go see that doctor, although she did have a phone consultation about 3-4 months after I had suggested going to see him. Or when she went to Europe, and was planning a tour of several countries, I suggested going to Portugal to see a doctor who had stopped his son's progression but she was adamant she was not going to go see him. I tried to get her to go see the naturopath that Derek Swinnard credits enabling his 20ish year survival, and she refused that as well. She went off her entire program and did not make an association that the extreme problems she was all of sudden dealing with could be related to that. For testing they liked people to stop taking stuff for 3 days, she went off her program for about 2 months and it was her fastest decline. She had been on her full program and Cowden for a month and I could understand her better a month later than I could the month earlier and that was dismissed, and that was when she went off the rest of her program and just did Cowden. Then she concluded Cowden didn't work or help her, so that was the end of that, and really, she only did Cowden properly for a month. There just also seemed an inability to actually move forward on following a plan without help setting it up, which was something you'd never have expected her to have a problem with.
When she went on nuedexta she did decide to try something that I had wanted her to try a year earlier, but at that point it was only six months from when she passed away. To me, she also understood the why.
Anyway, I do recommend nuedexta and with what I saw in how her behavior changed from ALS and how much she came back to herself with nuedexta and the improved decision making, emotional control and reasoning skills. I genuinely believe that the effects on her brain did cause poorer decisions. I think she would have had her independence even longer than she did. She did better than more than 90% of bulbar patients, but I think it would have improved her decisions and reduced the stress in her relationships. What she wrote to me after getting onto nuedexta was heart breaking, that she was destroying all of her relationships with the people she loved and I don't think she could have written that before getting onto nuedexta. Further, I always knew it was the disease and some of her behavior was hurtful, but I didn't take it that personally because I knew it wasn't her, and going onto the nuedexta allowed us to have that conversation that I nothing she could do would ever diminish my love for her, and I never considered any of it to be her, but all of it to be about what the disease was doing, and I know that meant a great deal to her.
https://www.alzforum.org/news/research-news/deficits-worse-als-stage
The following tips from Dr. Mercola are valuable for not just PALS but for all family members. You don't have to read them all at once.
30 Tips to revolutionize your health by Dr. Mercola
https://www.mercola.com/resolution-guide.htm
We include our prayers for each or you to find the right answers to heal your body so the ALS can resolve.
Kay
Dear PALS and caregivers.
We have always been so opposed to medications, that when a caregiver asked me about this drug a year or so ago, I gave my standard answer that all drugs are toxic. That may be true, but Kim has gone through months of being on drugs and although we are working out way off the drugs, they have saved his life. Most we have eliminated, but one heart med for a bit longer to keep his new heart pumping correctly and a blood thinner, again we hope for only a short amount of time. Kim has made some significant improvement in September, even played a short round of golf last week. Can't say he played well, but he did it. He continues to work on his therapy to help his balance and has an appointment on November 15 to get a cochlear implant.
Also, yesterday, 10-1-2018, he had a stem cell therapy. We have always felt like the body needed to be clear of toxins before that could be done and our local doctor here does them for a very reasonable price. We will let you know next month about the improvement he may be feeling. Our doctor did say that some feel improvement right away while other don't feel the improvement for 3-4 months.
April 12-2019. Update on the stem cell therapy that Kim did: He had no improvement from the treatment he had. We understood them to be stem cells from a placenta that was donated by a mother, but later learned that that may not have been the case. He was to return to get another stem cell treatment in 3-4 months but we were in Yuma, AZ at the time and it was too cold to be in Idaho. They indicated that it could take 3-4 months to see any improvement, but since we didn't see any, we didn't go back for another treatment.
Now the information on Neudexta.
The following information is from Deborah Wotherton, a very scientific lady in north west Canada who lost her sister to ALS. You can google Nuedesta and research the information on it. A very low dose may be helpful to PALS.
Nuedexta information by Deb Wot
I think this is very important. My sister had bulbar ALS, and the research consistently shows it to be a more aggressive form of ALS. As per this summary of a study on how ALS affects the brain, "Patients with bulbar involvement, meaning problems with swallowing and speech, were especially prone to have worse scores all round."
I absolutely recognized during my sister's illness that she lacked her reasoning skills in addition to the inability to control emotion. For example, when we found a doctor who did tests that found a bunch of problems, but it was obvious that we needed to seek a wider range of expertise, and at this point we knew about how our cousin's had started to have motor neuron problems and the doctor they worked with to fix them, she just never did go see that doctor, although she did have a phone consultation about 3-4 months after I had suggested going to see him. Or when she went to Europe, and was planning a tour of several countries, I suggested going to Portugal to see a doctor who had stopped his son's progression but she was adamant she was not going to go see him. I tried to get her to go see the naturopath that Derek Swinnard credits enabling his 20ish year survival, and she refused that as well. She went off her entire program and did not make an association that the extreme problems she was all of sudden dealing with could be related to that. For testing they liked people to stop taking stuff for 3 days, she went off her program for about 2 months and it was her fastest decline. She had been on her full program and Cowden for a month and I could understand her better a month later than I could the month earlier and that was dismissed, and that was when she went off the rest of her program and just did Cowden. Then she concluded Cowden didn't work or help her, so that was the end of that, and really, she only did Cowden properly for a month. There just also seemed an inability to actually move forward on following a plan without help setting it up, which was something you'd never have expected her to have a problem with.
When she went on nuedexta she did decide to try something that I had wanted her to try a year earlier, but at that point it was only six months from when she passed away. To me, she also understood the why.
Anyway, I do recommend nuedexta and with what I saw in how her behavior changed from ALS and how much she came back to herself with nuedexta and the improved decision making, emotional control and reasoning skills. I genuinely believe that the effects on her brain did cause poorer decisions. I think she would have had her independence even longer than she did. She did better than more than 90% of bulbar patients, but I think it would have improved her decisions and reduced the stress in her relationships. What she wrote to me after getting onto nuedexta was heart breaking, that she was destroying all of her relationships with the people she loved and I don't think she could have written that before getting onto nuedexta. Further, I always knew it was the disease and some of her behavior was hurtful, but I didn't take it that personally because I knew it wasn't her, and going onto the nuedexta allowed us to have that conversation that I nothing she could do would ever diminish my love for her, and I never considered any of it to be her, but all of it to be about what the disease was doing, and I know that meant a great deal to her.
https://www.alzforum.org/news/research-news/deficits-worse-als-stage
The following tips from Dr. Mercola are valuable for not just PALS but for all family members. You don't have to read them all at once.
30 Tips to revolutionize your health by Dr. Mercola
https://www.mercola.com/resolution-guide.htm
We include our prayers for each or you to find the right answers to heal your body so the ALS can resolve.
Kay