PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

[beauty4everyone]

STEVE WALKER – BEAVERS NOV 10th PALS –

"...beavers started harvesting the aspen trees in my next door neighbor's yard. So far it has taken out over 40 aspen trees"...

WOW, Steve!!! 40 Aspen trees?!!!! Dam beavers ?!!!!! (Sorry. Couldn't resist ) B

 

[KevinM]

Hello to all you brave brothers and sisters. Checking in and hoping others do if possible. Thankful for my slow progression, but I tthought Clearwater Al’s previous comment about being prepared even with slow progression was very good advice.

I hope that December brings together your loved ones, and you find moments of joy amid the struggles. Best, Kevin

 

[swalker]

We had a very pleasant Thanksgiving, even though it was just my wife and me. We typically travel to Texas and visit with many family members for Thanksgiving, but due to Covid we have put that on hold for the last 2 Thanksgivings.

I enjoyed getting out on a couple of 9 mile wheelchair ride over Thanksgiving. The snow is deep enough on the path up Vail pass that I can no longer make it up to my normal summertime turnaround spot, even in my high ground clearance, four wheel drive wheelchair. That will have to wait until next June, when the snow has melted.

Most of my recent excitement has revolved around trying to order some new wheelchair snow tires from NuMotion. It just should not be that hard! I started the process almost a month ago. Early this week they were not yet at a point where they could actually place the order. That will hopefully happen this week and I should have snow tires in a month or so.

When I buy other wheelchair tires online, I can place an order and then have the tires delivered within a week. Unfortunately, the snow tires I like are only available from Permobil and Permobil will only sell through a DME. So, I need to start a few months early on getting snow tires next time.

Steve

 

[wmilo]

Greetings, everyone.

My spirits have felt raised lately from doing some Christmas shopping. Maybe a bit more shopping than some other years, but I have sort of a "what the heck" attitude. And it's so darn easy.

We've been in the 40s for a couple of days, with nights below freezing and some light snow.

Best to all,

 

[bhg]

It’s sunny and warm here. Our mid-70s broke a 1959 72-degree high today. I’m not much into the holidays, this being my sixth since diagnosed and my progression speeding up. But, my hubby has a great attitude which keeps me going. Turn 80 in about a week. That’s old!

 

[Statius@]

We're enjoying the mild Tucson weather. Just got a substantial increase to my VA disability compensation--welcome though it's a sign of my decline, slow though it may be. Had a great Thanksgiving meal with both daughters and their spouses and grandson. Will enjoy having older daughter close by for the winter (she works at UofA)

 

[beauty4everyone]

Hi, Betty (bhg). MAY GOODNESS, HOPE, AND BEAUTY SURROUND YOU. B.

 

[bhg]

WOW, thanks.

 

[van1]

Winter has arrived.

 

[wmilo]

I'm struggling lately, literally and figuratively, because I am able to do very little with my hands and arms. It is exhausting sometimes to struggle to do a simple task and also to require help to wipe your own nose. My caregiver would lovingly do anything I ask, but I don't like the feeling that comes from the loss of agency. We all have our struggles as we travel this path. This part is a little rocky for me.

We are looking forward to a visit week after next from DS and DiL and grandchildren (one and 2 1/2). DD is supposed to come over to help put up the tree, maybe next week. DW is putting up some decorations. All good.

We've seen a few flurries but that's about it.

 

[KevinM]

I’m so sorry about your further progression, Bill. I had a very nice visit from a pALS traveling through town last week with his partner, and he suffers from the flail arm subset. He too, has lost a lot of arm and hand function, and he is experiencing the same rough stretch. But as he told me, he still finds the moments of joy.

With your family coming, may you have some great moments. Best, Kevin

 

[lisa g]

Sorry to hear of your struggles Bill. We are all learning to navigate our progressions. The holiday decorations definitely help to lift our spirits.

We've had flurries and snow here in Ohio also nothing major. I'm counting the hours to be on my way back home to Florida and some warm weather. The cold creates havoc on my legs.

 

[GreenCat]

I'm fine too.
Liz

 

[Statius@]

Bill, I relate to your observation that you don't like the feeling that comes from loss of agency. I'm experiencing more of that, especially in my hands, and in general. Enjoy the visits.

Ed

 

[Silver Oak]

I'm a new user on the forum and have only had ALS for almost one year. Right arm and hand shut down first, speech is slurred, left arm is getting weak. I'm working with Dr Namita Goyal at the UCI ALS Clinic in Orange, CA. Taking Riluzol 2x daily to slow progression. I have no idea what the rate of decline will be, but it is encouraging to meet so many of you that have had ALS for 6+ years. I'm planning to participate in new drug trials in January. I really appreciate all of your comments and plan to be a regular contributor .