Recent content by KevinM

Interesting comment. I hope the “unconventional data analysis” comment was not directed at the peer reviewed data analysis article published by Dr. Merit Cudcowitz along with many of the top ALS specialists in the world. Here is a link to their analysis: A randomized placebo‐controlled phase 3...

ACCENT - Andy‘s Crockpot Cooking Excites Norma‘s Tastebuds. CROCKPOT

Jimi, I have to say that you are simply amazing and an inspiration to us all. The practical knowledge and know-how you share is beyond helpful, and though you make it sound so easy I know how much research and effort went into everything you pass along. You have much more to give, my friend...

Please let us know how you fare. Best, Kevin

Stay safe Nikki, and everyone else in the northeast. I sure hope you don’t lose power with conditions that bad.

As a pALS with constant fasciculations I agree completely with the responses from Laurie and Tillie. Work with your doctor, but certainly don’t jump to ALS with that as your only symptom, especially at your age. Benign Fasciculation Syndrome (BFS) is in my view much more common than reported...

I guess someone needs to confront my neurologist, Dr. Michael Pulley, UFHealth, about his apparently erroneous statements that atrophy can occur before functional failure. That is if we are using the same definition for functional failure. So sorry to hijack your post, Dust. All the best, Kevin

Good for you for continuing to seek answers. Please do report back. I normally stay away from commenting on threads from folks with questions or concerns about what they are experiencing, and this isn’t directly aimed at your issues. However, I do need to clarify and actually contradict a...

OMG, words fail me, you dear lady. I’m sick to my stomach reading this.

NIBBLE - Nadia’s Itty Bitty Bikini Lifts....Eyebrows. EYEBROW

Glad to hear about your new addition to the family, Ed. So happy for you. Haven’t heard from some folks in a bit, so hoping to hear from as many as possible. Bill (wmilo), I’ve been thinking of you lately and hope you are able to check in.

Damn, that’s brutally cold, Nikki. I think I mentioned in a post a while back that our daughter went to UMass on a rowing scholarship, and loved her time in Amherst and her many trips to Boston to visit friends. My wife and I loved our trips to Boston while she was there but it was usually in...

Your neurologist is correct, Gracie, although most cases start with localized twitching that then spreads. I was one of the atypical pALS whose first symptom was body wide twitching, with no functional failure. As Al said, it is more rare than localized twitching that spreads, but it does occur...

I am so sorry and saddened that you are both going through this after losing your husbands to the same disease. I have trouble accepting that coincidence can explain this extraordinarily rare occurrence. My thoughts are with both of you. Kevin

Damn, Nikki, here I am complaining about how chilly our day is today in N FL. Only reached 59. Actually, I would like to see snow again at least one more time. I know it’s a pain for most folks, but it sure is beautiful when it’s falling. And everything gets quieter with a blanket of fresh snow...

I am sorry beyond words. As Nikki said, the experience of your husbands disease with the accompanying FTD does not mean you will follow the same path. It is so unfair, and so incredibly rare, that you both contracted what is already a rare disease. Rare doesn’t even do it justice, as the number...

Jeff, I am non-religious but the philosophy and teachings of Buddhism about enlightenment bringing an inner peace and wisdom certainly align more closely with my belief system. When contemplating my own death, I’m always reminded of the famous quote by Mark Twain: “I do not fear death. I had...

Just checking in to say that my wife and I tested negative with our PCR test. Looks like we avoided infection for the time being. Stay safe everyone.