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

[wmilo]

Glad you're back, Tengu. Lisa's suggestion sounded good, if you can still drink from a straw.

Getting colder here. High of 29 tomorrow or Wednesday.

 

[lisa g]

Sharing your cold weather Bill. I'm currently in Ohio and the high today is 30° tomorrow the high is going to be 26° I can't wait to go back home to Florida! We were planning on leaving on 12/4 but my husband just asked to stay another week. I'm fine with it as long as I can stay inside. Even with long johns on as soon as I go out into the cold my legs stiffen up like two sticks.

 

[Denise E]

Hello,
I’m “fine.” Survived my two twenty something kids home for Thanksgiving and they brought their dogs! Three dogs in all.
Now onto December holiday fun! Wishing you all strength and smiles!

 

[EricInLA]

Welcome Denise, though sorry you've joined this club. My two twenty something kids (23 and 20) also made their way home for Thanksgiving and we enjoyed every moment. It was a nice weekend and I am thankful for one more year that I can still eat the turkey, stuffing, and my wife's excellent sweet potatoes. I think eventually I'll be willing to do blended turkey and stuffing, though burrito not so sure. I will certainly enjoy ice cream shakes though.

I was hoping to get one more season of snowboarding on these legs, but lately I've noticed some minimal progression in my left leg so I'm not sure. The bigger issue is that in the cold I can't put on gloves because my hands hardly function in that weather and my fingers on the right side don't stay straight anymore, so that will probably end my recreational snowboarding before anything else. I'm still working these days - it's a bit harder with this disease, but it does keep my mind off the beast.

 

[Statius@]

After a long absence I pop up again. Slow progression continues, though I am weaker. Still eating breakast and dinner, speaking slowly, transferring with increasing difficulty. Luckily no falls. Looking forward to both children and families coming for Christmas. Best of he season to all.

Ed

 

[tamilard]

I'll keep it brief , but things for us are the hardest they've ever been... I think switching my antidepressants was too much of a shock to my system, and on top of heightened panic and daily diarrhea, I've developed a nasty case of oral thrush. My Healthcare providers let it go untreated for too long and I had to literally beg for medication. We are so exhausted from constantly suctioning yeasty paste out of my mouth and throat. Then I read that I need to start a special diet to get rid of it...
And I bit the bullet and just got a foley catheter put in, and it's brought a new set of challenges. But it's cut down on the stress from transferring frequently to the toilet or sitting in wet briefs, which have given me skin breakdown. I feel like I've been reduced to a series of gross bodily functions. I'm way too young, 28, to be dealing with this. Thank God for my parents, my homecare nurses, and my meds making me an emotionless zombie. Lol.

 

[lisa g]

tamilard, I'm sorry that you're facing all these obstacles at once. I don't know how much use of your arms and hands that you have for your oral hygiene. I do a few different things to cut down on the pasty film. After I'm done flossing and brushing I dip a toothbrush in Listerine and gently brush my gums, tongue and upper pallet. Other times I will fill my water-pik with water and Listerine and rinse my mouth that way. Then I use Atropine drops to cut down on the saliva while I sleep. In the morning before anything I brush my teeth again.

 

[tamilard]

I have almost no use of my hands at all, unfortunately. So it's other people also suffering with me. Brushing doesn't do anything for this slime. I can't touch my tongue without gagging and even vomiting. It's not just a case of morning film, either. It's like glue now, too disgusting to swallow. I started an antifungal mouth rinse the other day, and I think it has helped a bit, but the yeast is still stuck at the back of my throat and dripping into my mouth, coating my tongue. Atropine only works for me sometimes... My mouth fills up so quickly and it ends up spilling out or getting suctioned, because I can't swallow.

 

[SpeedyMarie]

Alive and holding on

 

[Scotiaspirit]

Still fighting this formidable adversary. Had a few bad falls this fall, and got hit with Covid two days after Halloween. Sadly my wife and main caregiver was diagnosed with multiple myeloma and the disease is too advanced for chemo or stem cell transplant. The cancer is through all her bones, blood and now lungs. My wife likely is down to her final months and her oncology team gave her 6 to 18 months in late March 2023.

She also got Covid and was hospitalized with both bacterial pneumonia and Covid pneumonia. Her 0²
Sats were down in the low 80’s and was given Remdesivir for the Covid. She is experiencing shortness of breath still, but is home and ambulatory now.

We are worried about our son, he is finding it difficult having both parents with terminal diseases. Just when you do not think things can get worse, his fiancés father is only 46 years old and was diagnosed with stage 4 lung cancer. Wishing all our pALS and cALS a happy holiday and Merry Christmas to those who celebrate the holiday. May the Blessings be!

 

[tamilard]

I'm sorry to hear about your situation. This must be especially tough for your son.
May you have a beautiful Christmas together.

 

[yogi pandya]

Hi all, I'm new to the forum. Doing well. Had a lovely weekend with a company party and then watching holiday fireworks with my kids, wife and friends.
Best wishes to everyone. Stay strong.

 

[SteveO]

It’s been a while since I posted and a lot has changed, gtube placed the last week in September, no anesthesia and watched the procedure on the Flouriscope I believe , 1 night in the hospital for observation. Gained 5 pounds since then but still working on another 10-15.
Recieved the eyegaze a couple weeks ago and I am still getting used to it but it’s really empowering to be able to do things again. A good friend made me a device that allows me to control my recliner with it or facial recognition on my iPhone similar to what Jimi has done.
‘Finally got my Permobil powerchair delivered after almost 3 months and still working on getting everything adjusted for all day comfort. Working on getting a van now so I can go out and about more often.
Wishing all of you ALS warriors and caregiver angels a very Merry Christmas and Happy New Year.

 

[wmilo]

Happy to see the many posts, especially for slow progression for Eric and Statius.

Tamilard and Scotia, I'm so sorry you are in those conditions. Words really fail.

Lisa, I hope you are back to warmer weather.

Best to all.

 

[beckerde]

Season's Greetings to everyone. First time in roll call. Diagnosed 4 years ago but things were popping up a number of years before. Living in SW Ohio with my lovely spouse of 42 years. Cook a lot and bake my own breads due to low sodium diet. Very few restaurants can provide loso food. I like my food better than most restaurant food. I determined several years ago that I was a blessed man and I am grateful for that.