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

[Krismn]

I’ve had a busy couple of weeks. A new power chair has been fitted for me and ordered. I also received AFOs which I feel work pretty well. The only problem is I can’t get them on by myself. Next week I have a pulmonary function test which makes me a little nervous.

The weather is beautiful in the PNW right now so I’m trying to get outside as much as I can!

 

[KimT]

Jessie, I'm so glad the kitties have bonded. They look so content together.

 

[Fusia]

After a s**tload of snow late last week and below zero temperatures over the weekend, our weather is getting back to normal now - daytime temps in the 50s with lots of sun. So, looking forward to getting out a little bit more in the coming days.

I'm making progress on transitioning to a new caregiver schedule. I'm getting a new person on board and will have someone here a few hours each morning and a few hours each evening to help with dressing/showering/meals. I also continue to work on home automation so I can be as independent as possible (plus, I'm just a geek).

I can't believe we are almost at the end of October! I hope everyone has a good week.

 

[Statius@]

My PEG procedure slated for a couple of weeks ago was canceled so now I'm scheduled for tomorrow. To top things off I fell yesterday and hit my head, causing lots of bleeding (because of blood thinner even though I'd stopped it the day before). No lasting damage, Catscan of head was ok. A few stitches leave me looking a bit like Frankenstein--timely don't you think.

Ed

 

[EricInLA]

Hi friends - It FINALLY feels like autumn (or our version of it) here in Los Angeles. It was nice to need a sweatshirt when going out on the deck in the evening. Big excitement in these parts with the Dodgers winning the World Series. Hasn't happened in 32 years, which means in any of the lifetimes of my 3 boys. Woo hoo!!

My middle son is in the thick of college applications. ALS has been a very sad development (to put it mildly) for our family, but has given the boy a great topic for his college application essay. And I'd be lying if I told you I didn't help him schmaltz it up a bit. We've got a real tear jerker going here! Why not use this mess for something productive?

 

[blitzc]

Kevin (aka the taskmaster and attendance secretary ), it was a busy day yesterday and I became too tired to type up my check-in.

Flu shot done yesteerday morning by drive-up appointment! ALS does have a few perks.
After that we had breakfast out (a rare occurance). The best part was meeting my good friend and fellow forum member Lisa and her husband! They came back to Ohio just in time for the cold fall season. What a delightful morning visit. Now we can really catch up and have time together!

My afternoon was an awesome opportunity. I was asked by the local ALS Association to help a Doctoral PT class understand ALS and therapy usage. It was a Zoom meeting where the professor and students asked questions to broaden their understanding first hand of my limitations, adaptions, and how therapy has or has not helped.

One of the toughest questions from a student: "What brings you joy?"

I know we had a thread for this question once about 2 years ago. I think it was located under "Stories of Hope". I'd like to start it up again. Thoughts? Yes/No? Where to post?

Have a blessed day everyone!

 

[KimT]

Cathy, Please start the thread. We had another thread that I miss and that was a PALS thread on things that helped. I believe Nikki started it. You can start it in the PALS section.

 

[lisa g]

Checking in a couple of days late. We made it to Ohio. The weather was beautiful for a couple of days so we took advantage of it and did some walking trails. Now the weather has turned cold and damp.

Covid seems to be exploding up here which makes me a little nervous. We are staying home-based for the most part. On Wednesday we met up with Cathy and her husband for breakfast. It was great to catch up. We will try to get together as much as possible.

I had a telehealth with the Gleason foundation to set up the voice recorder for voice banking. I recorded a lot of colorful phrases while watching the presidential debate.

I've increased the dosage of the Tudca I've been taking to 1000mg a day. So far so good no GI issues. I believe the dosage used in the AMX0035 dosage was 3000mg daily. Time will tell if it's been beneficial.

Until next week enjoy your day.

 

[Nikki J]

99 percent sure it is 2000 a day 1000 in each dose and it is twice a day. I think the separate TUDCA trial might be the 3000. At an earlier stage they had the exact mg on the trial listing but I think they took them down

 

[lisa g]

Thanks for the correction Nikki, 2000mg sounds better than 3000mg. Taking 500mg twice a day will work my way up to 2000mg.

 

[Nikki J]

Snowing here. It was supposed to start later then they said it would snow for an hour then pause until afternoon. 3 hours later no break! Snow is not unheard of here in October but we usually escape until November at least.

one side effect of the pandemic is that schools, many of which have hybrid learning, can now declare a virtual class day. No more snow days! Not all systems have adopted this yet but it sounds like a good idea and solves the make up day problem. In case someone doesn’t know what I am talking about school calendars here have extra days ( usually 5 ) built into the year in order to be sure the required number of teaching days is reached. If they are not used the school year ends a little early. A problem arises if the winter is very bad and they use more. They have to be made up by extending the year, skipping spring vacation or going on Saturdays.

i should add it is interesting the bar for closing schools varies by town here somewhat but is really different in other regions. The more northern places think we are wimps. we think our southern friends are.

 

[KevinM]

While we are on the subject of wimps, I am a world class weather wimp. Here in north Florida, it will only be in the mid-60’s Monday, dipping into the mid-40’s that night. That is our normal mid-winter day, quite a surprise this early in the season.

I still smile thinking about our daughter, a born and raised Floridian, attending UMass on a rowing scholarship for her undergraduate degree. She loved Amherst and it’s wonderful college atmosphere, but still cringes thinking about early morning Crew practice in late February and into March as they navigated through chunks of ice on the Connecticut River. Not surprisingly, she’s back here now for her graduate degree.

So on Monday and Election Day I will be wearing sweatpants, a heavy shirt, a sweatshirt, a knit cap, and my winter coat. Can anyone out-wimp that? Kevin

 

[lisa g]

Kevin,
Yes I can wimp out that! Here high today is in the 40's. I have on my thermal long John's sweat pants and shirt over that, my winter coat and gloves on and of course the heated seats on in the car. I'm a total wimp in this weather

 

[Nikki J]

Can you define what a Florida winter coat is Kevin?

 

[KevinM]

Much less than a parka, slightly more than a windbreaker...