I am doing OK. I am still recovering from getting way too cold on my wheelchair ride last Wednesday. I have unusually sore muscles and my skin is still quite irritated on my lower legs.
Today I was supposed to get the motors replaced on my Permobil C500 wheelchair that was damaged by Southwest Airlines in early February. It has been a long road, but I was really looking forward to having the repairs completed today.
The wheelchair technician arrived quite a bit later than promised. I asked him to confirm he had the right motors, so he checked the serial number on the chair and said all was correct.
He set about removing the right motor. When he was about finished, he asked if he could cut a wire that was in his way. The new motor did not have that wire. I was concerned. Further investigation revealed that while he apparently had the correct motors (I think), they did not come with the brake assemblies that fit on the back of the motors.
So, he put the old motor back in place and left the wheelchair much as it was when he arrived. He was here for about 3 hours to do all of that.
Now we have to wait until the brake assemblies arrive, which could be delayed by an approval process. Then they will schedule another service call to try to replace the motors yet again. Today was the sixth service call to try to fix the damage done to that wheelchair when we flew to Texas.
The next attempt to repair it will certainly be after Thanksgiving, and I think is likely to be after Christmas. I just can't believe it is so hard to get work properly done on a wheelchair!
Other than that I am doing well. Covid19 has really picked up in our community and we recently moved into the "orange" category (4 out of 6). The actual number of Covid19 cases qualifies for having us in "red" (5 out of 6), but I don't think the local government wants to do that with the ski area opening on Friday. The ski areas are the economic engine that fuels our county.
Nikki -Thanks for the suggestion of Loma Linda. That's a really good idea if Cedars-Sinai doesn't get their act together. There's some kind of Zoom update on the platform trial tomorrow afternoon, so I think I'll tune in.
Lisa - I hope you got in some good stretching in the workout room.
Kim - Thanks for the clues regarding heel pain. Your suggestion of seeing a podiatrist is a good one. So often I just chalk up any discomfort to ALS and figure it's not worth exploring, but you're right about not accepting pain when something can possibly be done. If this keeps up another few days, I will seek answers.
Ed - I have difficulty swirling spaghetti. It goes really slow if at all. I've learned how to use my left (and good) hand for chopsticks. I'm stubborn and can't give up and just use a fork (there's a great Seinfeld routine about Chinese people who 'clearly know about the fork', but still choose to use chopsticks.) I guess you'll have to move from spaghetti to rigatoni or penne (no twirling needed)
Steve - Sorry to hear about your continuing wheelchair saga. It really shouldn't be that difficult.
Kevin - Thanks for following Cathy's suggestion and making our day (though try not to make a habit out of wasting beer).
I had a good laugh when I looked at Kevin's picture -it brought to mind a few images of my college days a long time ago (and no dental work was involved)…
I've not been in a great frame of mind lately. In the eight months or so after I was diagnosed, the decline in my capabilities seemed to be going relatively slow. Over the last six months, though, it seems that the decline is more apparent all the time. I guess early on there were more muscles to compensate for the ones that were no longer working. Now, every little loss makes a very big difference. I yearn for the days when I could twirl spaghetti on a fork, even using two hands. But, I keep plodding along as best as possible.
Friends of mine from Chicago had planned to come in for Thanksgiving, but, we decided they should cancel the trip because of the spike in the Covid situation. I'm really disappointed and disheartened.
On a positive note, I have a new care provider on my team –she lives only a few blocks from me and she is just delightful. She's coming in several mornings a week to get my breakfast and to help me shower/dress. I'm amazed at how much energy I save by having her help.
These used to be my old favorite (occasional) sit back snacks…
I’ve given up salt, my favorite hot salsa and tostitos, sirloin
steak, a slice of hard pepper jack cheese with a smear of
horseradish on it, sweet and salty popcorn, sea salted
cashews, my occasional Dunhill cigar, teriyaki beef jerky,
occasional sipping a double Jack Daniels in a rock glass
with one rock (ice cube) and Slim Jims.
THEN. While I was enjoying my couple of cold beers on
two different visitor occasions they said to me…
“Should you be drinking alcohol?”
I reply, “Why not? Something else is working to do me in.”
Al, I like your style. We have a lot of good Mexican food around here and that's my favorite, so I enjoy my beers (and tequila) with chips and salsa and guacamole. I also like scotch with an extra large rock.
Nikki, I did indeed contact Michael Vazquez, and just this Monday he told me, via e-mail, that they're still waiting for the trial to be "approved" at Cedars-Sinai. I realize this info. conflicts with what's on the Healey site, and I don't know the reason for the discrepancy, but that's the same story they've been giving me for a while. I'll follow up to ask them why they're listed as 'enrolling' on the official Healey ALS website.
Hello everyone, and happy pre-Thanksgiving! As with manybPALS and CALS, my family and friend are thankful I’m still here and able to enjoy our time together. For all those beautiful souls that cared for and lost loved ones, I so hope that the fond memories of Thanksgivings past carry you through what I know can be a very emotional day.
So file this under the category of “Crazy Old Man with ALS Lights up Like a 100-watt bulb.” I’ve described before that my progression has been slow (another thing I’m thankful for) and I can still do tasks like blowing off the driveway with the leaf blower. Which I did this morning so the place would look nice when our daughter comes over. It is electric, and I have a long extension cord that is forever entangled and is an increasing aggravation as my shoulders and arms weaken.
It is also a very old cord, and I failed to notice the bare wires that had worn through as I rolled it up. I don’t know if any of you have been hit by 120 volts, but it is quite the rush. I wouldn’t be surprised if the neighbors saw me glowing for a minute or so. I’m fine, thankfully (yet another thankful moment).
I told my wife that it might have re-calibrated my central nervous system and healed me. In addition, it now appears that I have a permanent erection, so watch out...
Thinking of everyone more than ever this week. Best, Kevin
Wishing everyone a Happy Thanksgiving. We will be celebrating quietly just my husband and I, heeding the warning to stay home. We'll video chat with family members throughout the day.
Everything else here is going ok. I was experiencing alot of pain for the past week. I was concerned about progression, waking up with severe heaviness in both arms and legs. My back was also out making it difficult to sit or stand. After salonpas heating pads and warm baths everything seems to be starting to feel like normal.
I'm glad to read opinions on the upcoming covid vaccine. I've been on the fence about it.
Hoping everyone stays safe through this holiday season.
Wishing the Happiest of Thanksgivings to all. May the New Year bring us a vaccine for COVID and an eventual end to the pandemic. Having survived everything 2020 has thrown at us, I feel confident that 2021 will be easier on all of us.
What a shocking experience! If your progression stops, I'll be first in line for the treatment. You can even offer it from your home and make big bucks. Even if it doesn't halt progression, your wife may want to make it a weekly event given the outcome Anyway, thank you for the laugh. I needed it today, even if it was at your expense.
I hope and pray everyone is safe and stays that way. Dave, I was hesitant about the vaccine but I'm getting it, too.
Lisa, I'm glad your pain let up. I seem to make mine worse with every walk. The pool is the only safe place for me to move and only if I'm not twisting and turning trying to talk to people. We're going to get some of your cold weather down here so enjoy the snow and the beauty of the holiday up North.
Jessie, we're blessed to have you here. Your attitude is exceptional.
I'd like to thank every CALS in the world for the gift you've given or are now giving your PALS. It takes so much, I know. You guys and gals deserve the best.
Whoa Kevin, that's quite a jolt you took. I'm glad you were not seriously injured! I sure hope your (first) prediction is accurate. And if your second prediction is correct, I'm selling my Pfizer stock, because their magic pills may no longer be needed.
I’ve been contemplative lately, as I notice progression in my right hand. Yesterday I was paying bills, which involves writing checks, and I realized my handwriting now only holds for a short bit (one check) before it gets sloppy and then quickly becomes altogether impossible. Generally this freezes me in my tracks, and my head fills with morbid thoughts. But on this occasion I was able to redirect my focus to just solving the damn problem in front of me. Shift over bills to e-pay or the ‘bill pay’ function on the bank‘s website, and then carry on with the rest of the day. I even summoned the energy for a roller blade ride along the beach (legs still work fine). It doesn’t always work this well - we all have our days. But for now, I’m enjoying today, and looking forward to turkey, stuffing, and my wife’s excellent candied yams. I’m grateful for many things including still being able to actually digest the turkey and stuffing, and happy I’ll have football to watch and my family to be with.
I wish you all a very happy and safe Thanksgiving.