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

Jessie,
I'm so sorry about the fall. It breaks my heart.

Al, thank you for your service. I meant to send you a message yesterday but got sidetracked by my ailments.
 
I join Kevin and many others in saying a big thanks to all those who served. Like Kevin's father, my father was in the military. He joined the Army in 1946, was selected for pilot training and moved to the Army Air Forces in 1947, and then the Air Force later in 1947 when it was separated from the Army. He flew in the Berlin Airlift and was also in Korea and Vietnam. I was born in the Philippines and graduated from high school in Belgium, which is not all that unusual for someone whose parent was in the military.

I have many other relatives who were career members of the military, including uncles, brother in law, and brother. Most of those have passed now, but I think often about the sacrifices they made so that I could live the life I live. There are just no words to express how grateful I am to everyone who has served.

I had an appointment to have the motors replaced on my Permobil C500 wheelchair scheduled for 11:00 yesterday. I have been waiting with growing impatience since they were damaged in early February while travelling to Texas. The plan was for a technician to come to my house and replace the motors. Unfortunately, the van he drives was in an accident and they called to reschedule. So, I will wait a bit longer for those motors.

As I posted in another thread, I went on a very cold wheelchair ride yesterday. It was a beautiful ride, but I have been paying the price today for my prolonged exposure to the cold.

We had an additional 6 inches of snow last night, bringing our total to a bit over 2 feet for the season so far. We are over a month away from the official start of winter, but it sure feels a lot like winter here. At noon, it was 25 degrees F outside.

Steve
 
It's Thursday! A day late, but what the hell! Some days I just can't manage to do much more than just sit. I had a visit from a good friend yesterday for lunch and a nice afternoon of catching up. So by the time she left, I was tired.

Ed and all the other veterans here, thank you for your serevice and dedication to our country. 🙌

Eric- 50 pounds...upstairs? WOW you are amazing! I haven't walked upstairs for more than a year and a half and that was with someone pushing me up. I can barely pick up my little Chromebook laptop! Oh for the days I used to run stairlaps just for exerecise and haul cases of pop and 90 cup coffee pots at the band concession stand. My other life!

Jessie-I'm so sorry for the fall but glad everything went well and you had the help you needed right away.

It's getting colder here in Ohio now. Last week was beautiful with temperatures in the 70's. I got outside on the weekend and had the door open with the fresh air coming in. Now it's 40-50 degrees and it's dark at 5:30. Yuck!
I'm still having difficulty with my aide not coming. I hired a new one who is great but has limited availability. I've got a phone call started for another person. This is so exhausting trying to have someone here evereyday...
 
Cathy,
Good grief about the aide. It's bad enough not being able to do things but not finding the right aide or the right number of hours must be exhausting.
I could use someone here but I need to straighten out my finances and see how many hours I can afford. The last four years have not been good to me financially.
 
It's Friday, checking in a little late. The weather here is definitely changing. Time to put on my long john's 😩.

I'm just finishing up my Radicava cycle. Time for a break. Had some issues with my port so I had to take the medication through an IV line for a couple of days. Issues have worked themselves out so back to using my port 😅.

Not much else to report, staying at home as much as possible due to rising covid cases up here.
 
OK my turn to start. For some reason when I go to this thread it starts me on Page 1, which is in 2018. One of the entries on that page is from Chally. I didn't know him well, as he was unfortunately toward the end when I started here, but for whatever reasons I've had occasion to read his posts and always found them enjoyable. I also really enjoy Vincent's posts -- I haven't seen too much of him lately. I miss his posts.

I'm not my usually upbeat self this week. Not happy about the Nurown news, and also that the platform trial in my area seems to be delayed much longer than I anticipated. I'm noticing a little progression in my right arm/hand and legs, and though none of it has significantly affected my day-to-day existence, it's a reminder that that stuff is around the corner at some point. It's so strange going your whole life knowing that problems with your body will invariably recover, and then suddenly problems no longer recover. That one is tough, mentally. For practical purposes, my biggest stress is figuring out what I will do about my living situation (2 story house, with a guest room downstairs that's kind of small and has a bathroom that's probably not big enough to accommodate a wheelchair). I guess I'll procrastinate some more on that one.

One question I have at the moment - I'm having a pain at the back of my left heel - right where it turns the corner to go up to the ankle. I feel it whenever I fully stretch the leg, particularly when I tilt my ankle upwards. I think it also happens when I get up from a chair. Any insight? Is this ALS related? Maybe from muscle contraction in my left leg? (which happens to be my bad leg).

Hope everyone is doing OK and staying away from crowds.
 
I'm checking in early for once. I'm in a crappy mood today. The weather is cold which is causing havoc on my body. I'm experiencing quite a bit of pain for the last couple of days. I'm attributing it to lack of activity. Back home I'd be stretching and swimming in the pool or sitting on the porch enjoying the weather. Here I'm too cold so I sit on the couch with an electric blanket so my muscles are stiffled.

The Nurown results were disappointing but I never really put much faith in it so my disappointment is minimal. I have worked my way up to 2,000 mg of Tudca daily and am happy to report no GI issues.

Covid continues to rise up here, so starting tomorrow there is a 10:00 pm to 5:00 am mandatory curfew for the next 3 days. Hopefully this helps. I'm noticing that alot of the Amish here do not wear masks. I was told by a local that they are the Amish that are typically Republican.

I'm going to venture down to the workout room today with my Clorox wipes and stretch my body alittle. That's the plan, first I have to crawl out of my electric blanket that my husband bought me a couple of days ago.

Hope everyone is doing well and staying safe 💗.
 
Eric,

I was having horrible heel pain and went to a podiatrist. He said it was classic plantar fasciitis and, after a steroid injection, referred me to PT. I'll go for my second time today. I insisted on an MRI before PT and that found I had sprained my foot plus my plantar fascia was inflamed. When I went to the PT, he tested my strength in all parts of the leg and foot. Not too pleasant but he found that the only thing that was clinically weak, in his opinion, was my big toe. He thought my muscles were all very tight and the main work to ease the stress on my foot was massage and stretching the leg muscles out.

In 2018 I had a contracture in my right knee. That PT worked on it until my leg was nearly straight again.

I don't believe in just accepting pain unless the true source is revealed and measures are taken that could lessen or eliminate pain, especially when it comes to mobility. I still have pain in my right knee but the PT corrected my gait for over a year. Now I'm walking funny again.

The doctor also recommended HOKA running shoes. They were hard to get used to as they are very stiff (stability). I may need a boot for the plantar fasciitis to heal if PT doesn't work. That scares me because it'll only hasten atrophy in my calf.
 
That’s disappointing news about Nurown 😞

It’s been cold and rainy here so I haven’t gotten outside much. I was able to purchase a full electric bed which has been wonderful for getting sleep. We are also working on converting the dining room into a bedroom

I hope everyone is doing ok!
 
Ok here as winter begins to settle in. Our governor finally decided to take steps to address covid, though too little too late. I notice small things marking progression. Twirlling spaghetti on my fork, which I'd begun to do two handed when one handed technique became too hard, was nearly impossible last night. Not a tragedy, perhaps somewhat comical--after all I can still eat--but a marker of failing hand dexterity. Had to give up chopsticks a couple of years ago.

Ed
 
Flurries today! I love ❄️ and cloudy days make it a heck of a lot easier to use my eyegaze.

Now that he's won reelection, Governor Sununu is ignoring NH's record high Covid numbers and is almost Trumpian in his lack of action. I'm nervous about Thanksgiving gatherings and people thinking it's ok to act normally.
 
Ok, everybody, you beat me to the punch. So glad to see folks checking in.

Eric, Cholly was a real treasure, as was Karen and so many others. I miss them all terribly as I look back on my first posts in March 2019. I hate this disease.

I’m okay, but as Eric said the mental stress of knowing all my joint and muscle pain and slow but steady weakening will never improve and continue to get worse eats away at me. Focusing on what I can still do and being thankful for that only goes so far. And I’m like Lisa re: Nurown. Really was skeptical of all the hype (though I desperately wanted to believe), so I’m not as devastated as many in our tribe.

Though the weather here is gorgeous, it has been tough to enjoy the past couple of days. My wife, who is an assistant teacher for middle school special needs kids, is in the middle of another COVID scare. The main teacher she works with became ill over the past weekend, and tested positive. Thankfully, they sit on opposite sides of the class, are always masked, and her close contact is limited to a few seconds each day exchanging papers.

She was cleared by the health department because she did not have close contact for a cumulative total of 15 minutes on Thursday and Friday, and she was off work last Tuesday and Wednesday, so her exposure during the likely period the teacher was most contagious was limited. We are monitoring closely and hoping with all our might that she didn’t contract it.

And I just got done finishing up a root canal on my lower molar that was infected. My endodontist had recommended extraction last month when he did a partial root canal and I went to my regular dentist last week planning to get it pulled. However, he examined it, saw that the infection was basically gone, and given my slow healing/weakened immune system, said if it were him he would finish the root canal, seal the tooth, and go from there. I was all for that, since I have enough ALS pain without inflicting more pain and possible complications from an extraction. Hope it works.

So right now I’m sitting on the porch dribbling beer out of my numb mouth, waiting for my nervous wife to get home and hopefully tell me she still feels fine. Keep going everyone...I need each and every one of you. Kevin
 
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