Recent content by KevinM

Sorry Ed. I was thinking about Scotiaspirit. I’m worried that we haven’t heard since his issue last week. Sure hope your tests come out okay. It’s always something it seems. Bill, thanks on the upcoming birthday. Joy and sadness at the same time. I totally relate to losing strength and the...

Hi everyone. I know that Nikki wisely changed the roll call from Wednesday to anytime, but I’ve become so compulsive in my routines that I’m still a Wednesday guy. I’ve had a bit of a rough week with my chronic GI issues flaring up, but it’s starting to slowly improve. I have to watch what I...

Always great to have you chirp in with a comment, Vincent!

Scotia, do you use a catheter? If so, check for blockage. A shot in the dark, but my mother had a catheter when in the hospital years ago and developed reduced urine output and drastic swelling of her belly. They were literally ready to operate for a blocked intestine when a nurse noted the...

Great to hear, Bill. My second dose is next week, so we will see how it goes. Jesse, your outing has had me smiling all day. Eric, that is so cool about your son’s talents. Florida State has a very well known music/jazz department, and some of the jazz shows put on by the students and faculty...

Bill, I forgot to ask how you’re feeling today after the second Pfizer dose? K

I am so glad to see such a good number of you beautiful people checking in! The news is not always cheerful (how could it be?) but I feel communication among us is so very important. Ah, stubbornness and (semi) denial—two of my lifelong character traits that have been turned up to 11 since my...

Holy sh-t, Dave, it’s a wonder you escaped the hospital before more damage was done. So glad you saw your son, the bleeding episode has stopped, and that you are back in the comfort of home. K

Thanks for jump starting the roll call, Cathy! Sure hope you can get out and smell the spring air this week. I, too, continue to be horrified at the mass shootings that occur in our country with such frequency that I can’t keep up as practically every week there is new atrocity. In between...

Thanks for pulling up the article, Samki. Though it wasn’t stated, I presume at some point (completion of the trial?) the treatment was stopped. The issue of open label extension for trial participants couldn’t be more pertinent if that was the case. Nothing would be harder mentally than seeing...

That’s interesting, Samki. I did not see his interview. I wonder why the treatment was stopped? Also, I know that even if he felt it did help, his overall progression was typical of many, so I believe—as with AMX35—that the results, if positive, will be modest. Trust me, I’m rooting with all...

I have found that hype far outpaces actual results with most proposed therapies, even those that have made it this far. I am pessimistic about CUATSM, but that comes from only one anecdotal result. I recall reading about an Australian barrister that was diagnosed in late 2016 and in 2017...

Deb, I forgot to mention that my wife and I really enjoyed visiting Leadville a couple of times. We had a large RV up until I was diagnosed, and to escape the Florida heat we would stay out west each summer for a couple of months. At 10,000+ altitude, it was amazing in the summer. Always loved...

Hi Deb. It is so very true that only those with the disease can fully relate. That is why I have found this forum to be so helpful. Like it our not it is our tribe, and I take great comfort in our virtual togetherness. My wife just got her first Pfizer dose today, at a CVS literally blocks...

Lisa, that just made my day! Thanks so much for posting this beautiful picture. Kevin

Steve, your comment about the “enormous” snow made me laugh. I was so sure that since Denver and Cheyenne got it good that you would, too. Same thing here about hurricanes. When the state gets hit, even it doesn’t really affect us, everyone contacts me to see how much damage we had. Lisa, I so...

Thanks for getting a head start on the Wednesday check-in. All of us love hearing from you. Your strength in going this alone (with your caregivers) is incredible. I always take inspiration from your posts, and I sure hope the UTI clears up soon. Would love to hear from as many of you amazing...

Great point about the Beartooth highway not being open, Steve. I have never been there that early in the season. A pity...it really is spectacular. But then so much is spectacular in that area. And the Tetons are a great suggestion, if Cathy has time. On my list of top five NP’s.

Sorry Cathy. I missed the part about your trip starting on May 10th. Ignore the Sturgis stuff. With your trip set for early May, you may still be able to schedule lodging within Yellowstone and at the Game Lodge at Custer State Park, should you choose. Scheduling from June-August must usually...

Jimi, I can’t offer any advice on your question since I’m not at that stage, but I wanted to say that you (and your wife and Mom) are an amazing inspiration to us all. Your attitude and ability to control your environment is truly awesome. I know you will make the right decision either way...

Yes, the Sugar Shack does have great burgers! There is also a Hispanic lady in Custer that has a roadside burrito truck in the summer that serves above average Mexican food if you are looking for something quick and easy. And the mammoth site is really neat as well. So many interesting things to...

I’m so thrilled you are planning such an exciting trip, Cathy! Your son will carry it with him forever. We have visited Yellowstone several times, but I will defer to Steve as the resident expert on that awesome place. I do strongly suggest that you take the 62-mile Beartooth Scenic Highway...

That’s very counterintuitive for me, Steve, that when the front range gets hit the higher altitude areas typically get less. Fascinating story of a mini microclimate in your area when those type of systems come through. The company I worked for for 30 years was headquartered in the SF Bay Area...

Sorry about the long wait. The CVS I had my dose at was so well organized and efficient. About a 10-15 minute wait in a socially distanced line. Hopefully the metallic taste will subside and will be the only side effect. Keep us posted. She has been stung before, but never in the “thin meat”...

Kim, my thoughts are with you. I know you have some apprehension, but all will be okay. I had my wife scheduled for her first dose of Pfizer today, but we had to cancel. She was working in the garden yesterday and got stung by a large red wasp on her right index finger. She had no severe...

PITHY - Pamela’s Innuendoes Tease Harold’s Yearnings. YEARNING

Steve, if you have time we would love to see some photos of the snow that slammed Colorado and Wyoming the past couple of days. It is hard for me to imagine as I sit on our porch with 80 degree weather and everything in full bloom. Plus, I’d just like to hear from you and your travel plans...

So good to hear from you, Bill. I always love your “sentence game” posts. Very clever and witty. I am one of the slow pokes, at least for now. Despite my recent good news from my neurologist, he isn’t able to gauge what is going on in my body. It’s all happening, but it it isn’t collapsing at...

OK, first dose of Pfizer done. Hell, the needle is so small I didn’t even know he had injected me. The only side effect so far is that I’m horny. I may try to get four or five more. K

Oh great. Big confidence boost on my vaccine tomorrow, Lisa. 😊

Hi everyone. Wednesday again. I’m reminded of that old daytime soap that started with “Like sands through the hourglass, so are the days of our lives.” Our sand sure seems to drain fast, doesn’t it? The days often are tedious and long, but the weeks roll by so quickly. I’m sure hoping we can...

SHELVES - Sasquatch Hates Eating Leftover Vegetables Every Sunday. LEFTOVER

Just scheduled my first shot (jab, which I prefer. The Brits are so much more descriptive) of the Pfizer vaccine for March 11th. Even though Florida will lower the age to anyone over 60 next week—I’m 63– I wanted to go ahead as a medically vulnerable patient to get it done this week before the...

Same with my wife having to stay home until the results came in. Sure hope your daughter is negative, Lisa. My wife will be scheduling her vaccine next week (hopefully) and I plan to get my doc to complete the Medically Vulnerable form for me, so it’s moving along. K

Kim , I’m not sure how to do a PM. Went to the envelope icon next to my login and tried to start a conversation. The error message says it contained spam-like content and couldn’t be sent.

I am so sorry, Kim. I know you have had pain from various issues in addition to ALS, so I’m sure you were hoping to find another cause. I have muscle and joint pain, but nothing like the nerve pain you describe. Boy, it sounds like fibromyalgia to this layperson. I so hope the pool and warmer...

With a nice Chianti and fava beans, no doubt....

Hi all. Still trying desperately to keep the roll call going. Thanks Fusia, for posting on the right day! A picture perfect spring day in north Florida. 70 degrees, not a cloud to be found, blooms everywhere, birds twitterpated, the distant sounds of weed eaters and lawn mowers, oak and pine...

Ditto to what the others have said, Russ. There is a kinship among us, and I hope you find the same sense of virtual companionship I have found over the past couple of years. Best wishes, Kevin

I still come down on the side that having a physician prescribe morphine (I did not mean to imply bottles and bottles with my “lots of morphine” comment) outside of hospice-and every hospice is different-will be challenging, much more so than it was even a few years ago. Depending on where you...