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

[KevinM]

So sorry about the kitty entanglement, Lisa. Our 17 year old gray tabby Lily doesn’t move like lightning any more, but she positions herself right in the middle of our smallish kitchen, so meal preparation is an adventure. Factor in our ever present sheltie Rosie spinning like crazy whenever the dishes start clattering, and it quickly becomes a furry obstacle course.

I am at your service for free giggles. I think I’m becoming the court jester of the forum, a title I bear with honor! K

 

[KimT]

Lisa, Ace does that to me all the time. He is a food hound and comes running anytime anyone is in the kitchen. He's fast and aggressive for a 7 pounder. But he's very sensitive and if I use my deep threatening voice, he retreats. I've stumbled over him and, fortunately, caught myself.

My GP calls tomorrow with advice about my getting the vaccine. I've had two severe reactions to injections of antibiotics and also fire ants. I carried an epi-pen for years. I'm going to ask her to prescribe an epi-pen and also take a Benedryl before my first shot. ALS doctor said he recommends my getting the vaccine in a clinical environment, so I'll go over what he said with her and see how she feels.

I walked 1/2 mile today before one of my ankles started hurting. It seems like all my joints hurt but usually during activity. When I got back I iced my foot where it was sprained. I think the plantar fasciitis has healed but the sprain, which I believe was a result of the plantar fasciitis treatment is still sore. Ice helps a lot.

Today was a nice 71. Tonight a front comes through and we won't be out of the 50s tomorrow with a strong North wind.

I decided to get a new central air system. Mine is over 11 years old and they don't hold up on the ocean. The one I have in mind will set for both temperature and humidity. I like the humidity between 45 and 50. Any lower and my eyes dry out. Any higher and I'm afraid of mold. In my neck of the woods, low humidity is never a problem but high can be. I want this done before Summer when the companies get busy.

 

[Krismn]

Sorry about your shaving incident Kevin and your fall Lisa!!

Kim, I hope your vaccination plan goes well!

There isn’t much new happening with me. The main issue lately is dealing with the boredom I’m going to rent an accessible van in a couple of weeks so I can plan activities to get out of the house. Hopefully that helps!

 

[mpnatx]

Not much going on around here. Very bored like everyone else. Lost my balance last week. Hit the wall hard with my chin. Dislocated my jaw and couldn't close my mouth. I reached in my mouth and under my chin, jiggled and popped back in. Extremely painful, but getting better.

Kevin, I've been a sheltie lover for a long time. She's the best therapist I've ever known!

 

[Statius@]

I need to attack my overgrown beard, so I'll try to avoid your issue Kevin. My problem is my unsteady hands. Got my first Moderna vaccine yesterday from the VA. No side effects yet, tho I have had anaphylactic reaction in the past (to aspirin). Now to get my wife/caregiver hers--she needs it far more than I.

Ed

 

[nona]

My caregiver of two years gave her notice yesterday. She was in tears but she is burning out. I am devastated. It will be hard to find someone as good in this rural area. Fingers proverbially crossed.

Other than that, not much happening. I love not being afraid to check the news.

 

[EricInLA]

Sorry for your caregiver situation Jessie - hopefully you can find another good one. I would say check in with ALSA or CCALS but you probably already know to do that. I totally agree with you about checking the news. It's so nice to have normalcy -- not to mention calm and steadiness -- returned to our national leadership. Kevin and Lisa - hopefully you've used up your mishaps for the year!

My excitement for the week was getting a new piece of art custom made by my son's girlfriend! We were chatting one day when she revealed that she is an artist and does paintings with both oil and acrylic. I told her we needed something to spruce up this blank wall that appears in the background when I'm on Zoom calls and she said she could do something for us! I told her we'd love something abstract with an emphasis on cool colors (blues and greens) and here's what she made. It will hang horizontally on the wall. I really like it.

 

[Ed340hp]

It's been six years this month since my GP mentioned ALS due to muscle loss in my hands, and I see him Friday for my annual checkup. The forecast is rain, but I hope they are wrong because it is easier for me to take my 3-wheel scooter the mile to the office rather than transfers in a vehicle. With COVID we have to wait outside the office for a text allowing entry (waiting in the cold, and my body hates the cold). I switched up my indoor bicycle routine, to less effort and distance with more pedal speed. It is less bragging rights with the shorter distance but I am working more of my core and improving my balance. The TUDCA (@1000mg/day) and curacumin seem to have reduced my body's need for trips to the urinal in the bathroom with almost no urinary anxiety. I am taking in the same liquids, coffee, gatorade and an afternoon beer, with improved bladder volume and control (better than pre-diagnosis years ago as I am sleeping through the night). I'll be asking for more OT and PT in my check up. Be optimistic, everyone.

 

[EricInLA]

Ed340hp - It is inspiring to hear that you are still on the indoor bicycle 6 years into this, and that you are working on improving your core and balance. So often with our group we are just trying to preserve what we have, so it's awesome to even hear the word "improve". I'm curious how long you've been on TUDCA and whether you have noticed any other effects, positive or negative. And it looks like the rain should let up mid-morning on Friday, lunch hour at latest.

 

[blitzc]

Hey gang! Busy couple of days. My husband is on vacation this week (with no place to go), so we went to have lunch with his father and sister. The drive is an hour away and no one wanted to be in a restaurant, so we went at 2:00. Empty place. It was great! Today I went for a haircut and manicure as well as another late lunch out.

Saturday he wants to go look at a new matress. I can't move in bed anymore, my hips scream in pain after being in one position for a long time, so he has to turn me every couple hours. Now not only am I not sleeping due to hip and leg pan, he is not sleeping because he has to turn me all the time. ARRRGGHHH!!!! He is looking at Sleep Number with separate sides to raise and lower.

Any thoughts on this as a solution to my pain in my hips? I know it won't turn me during the night.... But now I don't get much sleep and I lay in bed miserable every night.

Next Tuesday I have yet another telemed appointment with my nuerologist.

Lisa, so sorry about the fall. Darn cat!

Krismn, I had an amazing laugh reading your post...I thought you said your main isssue was with "bedroom" not "boredom"!!!! Everyone read her post changing the words. It's today's chuckle!!!

 

[lisa g]

So sorry to hear about the pain Kathy. Glad your getting to do some fun things this week.

I've had a sleep number bed for a number of years. I love it. We're considering upgrading it this year to an adjustable one.

As far as my Abbey cat, you gotta love her she knew she did something wrong and tried to make it up to me for the rest of the day. My butt and hip are sporting some pretty good black and blues. I was lucky.

 

[swalker]

I continue to do well. I am using the NIV (Resmed Astral 150) and cough assist more, which seem to help. I am so glad to have the hospital bed with the auto-adjusting air mattress. It really helps with the amount of time I am spending in bed.

Two weeks ago, my C500 wheelchair that was damaged by Southwest Airlines a year ago was returned to me after what was supposed to be the final round of repairs. Unfortunately, while doing the repairs, they managed to break the shroud they had already replaced due to damage caused on my flights. It has been two weeks and I have not yet heard about when they will be able to replace the shroud. It has turned into a comedic tragedy!

I got out in my four wheel drive wheelchair yesterday for a one mile ride. It was a cold ride, but I enjoyed being outside.

Ed340hp, I am also 6 years in and also can still get on my indoor bike. I can only stay on it for 5 to 10 minutes, but it sure improves my spirits just to be able to spin a low gear for a few minutes. I was able to continue to ride my bike outside for short rides for a couple of years after diagnosis. My neurologist told me not to, but I found that it took less strength to ride a bike than it did to walk!

I have told my wife on several occasions that of all the activities I can no longer do (hiking, backpacking, climbing, skiing, etc.), cycling is the one I miss the most. I just loved to ride a bike, especially a mountain bike on singletrack.

Steve

 

[KevinM]

Wednesday’s sure seem to roll around quickly. Maybe it’s because the days blend together, and with COVID we are quite limited in our out of the house activities.

Our wonderful daughter was able to come by for dinner last night after staying away until she was tested again (negative earlier in the day). The reason is interesting and a little bit concerning.

I mentioned that she works with a local physician on rehab therapy for folks, mostly seniors, who have had orthopedic surgery or other issues. Everyone in the office has received both doses of the moderna vaccine, and other than a sore arm for a day, she had no other side effects. Same with her colleagues. Their second dose was administered about two weeks ago.

However, a week ago Monday a male coworker that visits patients at their home began to feel unwell, and tested positive for the virus last Wednesday. Our daughter had very limited contact, but stayed away from our place until she could get another test.

Here’s the thing. He has developed a pretty serious case, though not to the point of requiring hospitalization. He should have developed a robust amount of antibodies, even if the second dose might not have fully kicked in. Nevertheless he got it, and not a mild case either.

I understand that the vaccines don’t necessarily prevent infection, but the fact he has a more than minor case is worrisome. By no means am I suggesting that we should not get vaccinated as soon as possible. It’s just that there appears to be outliers to the presumption that the vaccine prevents all but mild cases.

I would also be interested to learn if he could have gene sequencing done to identify possible variants. Don’t know if that’s possible here, but I’ve asked my daughter to inquire. I’ll report back when or if we learn more.

Check in if you can...I care so very much for everyone on the forum. Kevin

 

[nona]

I just read this on Twitter. Pretty much sums it up.

"every day I wake up and begin the 16 hour process of getting ready for bed"

 

[Nikki J]

if he was symptomatic a week after the second dose ( or maybe slightly under a week) he had likely been infected around the time he received dose 2 maybe even before So that second dose had not kicked in. It is still disappointing but we know it isn’t 100 percent and we also know we still need to be wearing masks and being careful after vaccination

if he isn’t hospitalized that is a good thing. I hope he continues to be able to be at home. What defines his serious case? Is his O2 sat compromised or does he “ just” feel awful?

things are ok here. We were spared the heavy snow that much of the area had as Boston and the coastal town south of it got a warm front. rain and only a couple of inches of snow