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

[Statius@]

All the best to those of you suffering the effects of fires and storms. In Iowa it's just hot and humid. I had good news from a catscan earlier this week showing the clots from my pulmonary embolism have dissipated.

Ed

 

[Dee Dee 0617]

My prayers are for our country and our people. Physical, mental, emotional, political, ecclesiastical, it seems we are facing one or more of these challenges daily. To think we had thought all we had to be concerned about was ALS. I was looking back at pictures from Woodstock 1969. I marveled at the crowd. 500,000 people all promoting peace, love, and freedom. I was 10.Only 2people died. One self inflicted overdose, one run over by a tractor. Does anyone know how to copy and paste with tobii? I can't find it anywhere where, also highlight and drag

 

[lisa g]

Hoping everyone is staying safe from the fires and for anyone that will be experiencing hurricane Laura, I will keep you in my prayers.

School started here on Monday, my daughter who is a 6th grade teacher was feeling very stressed. Neighboring counties started earlier are already seeing outbreaks of Covid and have been quarantining students so I guess we'll have to see what happens here. Kevin, I hope your wife stays safe.

I've been in touch with team Gleason to find out about voice banking. I spent 2 hours with a speech therapist going over all options. They'll be sending me a microphone recorder to start the process. She also recommended a voice amplifier so I would be able to save energy while speaking.

I went today to get my flu and pneumonia shots. I was surprised when the pharmacist told me that the new pneumonia shot is given in 2 doses and that Medicare will not cover the injection if your under 65. The only way around that is if you have an underlying issue and your physician gives you a written prescription for needing it. So I'll be calling my PCP tomorrow.

The 2020 Hope and Health Symposium is this Saturday, I've signed up to hear different speakers. It should be interesting.

 

[KimT]

I'm praying for all who are enduring the fires.

I'm very chemically sensitive. When I first moved here, I bought a hospital grade air purifier and it really removes smoke and other odors efficiently. It was around $1,000 but worth considering. I'm glad I have it and even happier that I've yet to need replacement filters.

This week I had two tests at the hospital. One was an MRI with and without contrast. It showed enhancements of nerve roots, which can account for my pain. The second, today, an arterial blood draw (I haven't had one in two years) was very good. My CO2 was borderline low (which is a very good thing) and my O2 was borderline high. It only took five tries by three different people. I was more worried about contracting CV than getting the results. It only took five minutes to get the results. The RN who did the successful draw said she thought my doctor would be very happy with the results. I was just happy to get out of there. I must have used a whole bottle of sanitizer in the car. When I got home I took off all the bandages and scrubbed down like I was going into surgery.

For you folks with spouses and students starting this week, I'm praying for them.

I'm missing Karen so much.

 

[nona]

@Dee Dee 0617 , I tried to send this link in our DM but it didn't let me. Oh hey, administrators

Click n drag demo

 

[Dee Dee 0617]

I don't have those selection options I have x, left click arrow, dbl click arrow, right click arrow, pause, keyboard, and three dots. Choose the dots and I get settings, programs, dock window, scroll up, scroll down, change selection bar left or right side of screen

 

[KevinM]

Another Wednesday already, and I’m hoping others post if possible. I miss hearing from many that I consider an extended family, and hope that you are still with us and able to communicate.

I’m still here, constantly battling fear and anxiety, and compulsively test myself every day to see what is declining. Just another day in the life.

My wife has made it through the first three days teaching special needs children at her middle school. There are only six in class this year, as the other six are virtual. All of the kids so far are wearing their masks, keeping distance, and washing hands, so cautiously optimistic that with the small class and ability to keep separation she can stay safe.

Hang in there, everyone. Kevin

 

[nona]

Here with you Kevin! I have also been more anxious, mostly I think from my student nurses graduating and getting real jobs and having to find new helpers. I think my stepmother is burning out and I am sad that the pandemic keeps her from seeing her grandchildren in Seattle and Maryland. One of my best friends is a fifth grade teacher and she is stressed to the max!
I am enjoying watching the Celtics and the whole NBA bubble experience.
Love you all.

 

[EricInLA]

Returning that love, Jessie and Kevin and others. I am also enjoying the NBA bubble playoffs (Go Lakers) - the last two night's late games were really exciting.

I have been suffering from shoulder pain the last couple of days. I overused my weak right arm on Monday, and it let me know by Monday night - shooting pain when I move my arm around. Couldn't even lay down that night. Then I read in the big ALS book (the one by Mitsumoto) that shoulder pain is quite common in PALS, probably because knuckleheads like me push weak limbs to the limit. So, I'm using my left arm for everything which is good practice I guess. It's feeling a little better today though.

I was very encouraged by the Amylyx news yesterday. I do think they portrayed it as a bigger breakthrough than it actually is on the NBC Nightly News, but no matter, it's nice to see positive results. And it was so cool to see Kristina and her husband on there! I'm wondering how quickly we will be able to get our hands on that good stuff, through the normal prescription channel.

I wish you all a nice weekend. It's gonna be a scorcher here in LA

 

[KevinM]

I’m right there with you on the shoulder pain, Eric. I have had a pretty slow progression in the 15 months since diagnosis, with the main areas affected my upper back, shoulders, and triceps, along with slow but steady systemic weakening. Still functional for now, though.

i constantly fall into the same trap you did, in that I still think I can do many of the things my healthy self did. Of course then I pay for it. When that happens, Tylenol, Icy Hot massage, my CBD/THC oil, and the occasional vicodin if it’s real bad gets the pain under control. That, and trying not to be a knucklehead for at least a few days. K

 

[blitzc]

Shoulder pain group...I'm in too, unfortunately, Kevin and Eric. Frozen shoulder is the diagnosis from my neuro and PT. I've had it in both shoulders about a year apart. Too much activity and very limited range of motion. So given the passive range of motion exercises over several months, it has subsided. Lately my muscle aches have been quads and knees... oh and wrists and hands...oh not to forget the awful neck pain daily sending me into headaches each night. But today is not too bad yet!

How did I miss the NBC Nightly News featuring Kristina??? I read the article posted on ALS News Today and our local ALS Assoc. which sent a link for a petition to expedite FDA approval. I'll try to search online for the news story.

Great news here this week-we finally purchased a handicapped van and had it delivered just today!!!! It's a 2016 Honda Odysey with accessability by Braun Mobility. It had one previous owner using 26,000 miles. Way too much money of course...thus the delay in aquisition. This disease comes with a hefty pricetag. Using my retirement funds.

Love watching baseball, even without the fans. Haven't watched NBA yet. How's your Red Sox, Jessie? The Indians are first in their division as of today.

Good to hear from everyone!

 

[blitzc]

Kristina and her husband are stars!!!! I just found the episode. Best wishes to you both.

 

[nona]

Cathy, the Red Sox are so bad! No pitching!

 

[lisa g]

Just another day here. I've been extremely lazy the past couple of days. It's been so hot. I've been going in the pool, taking naps and sitting inside the a/c reading a good book.

I spent Saturday on the computer viewing the ALS Health and Hope Symposium. There were alot of good guest speakers and vendors. Dr Bedlack was the highlight. He's looking at a trial to start with Theracurmin. Sounded very interesting. I was surprised to hear his opinion on Radicava, he doesn't appear to be a big fan. He said there wasn't enough data. He spoke of supplements that he feels help. One of them is the Theracurmin. I emailed him and spoke to him about the supplements that I take, 3 of them out of the 5 he recommended I already take. I wanted his opinion that if I added the Theracurmin if he thought it would be overkill. He felt it wouldn't hurt and he would be curious if it helped.

UA Miami had ordered genetic testing. I'm waiting for the results from that. Dr Benetar said when the results come in he'll be able to tailor a plan of action for me and steer me to clinical trials.

Hoping to go up North for a couple of months to get out of this heat. That's all going to depend on Covid and our hurricane season. So we shall see. Hoping everyone is staying safe.

 

[KimT]

Add me to the shoulder pain group. I might have initially torn my rotator cuff in an accident but I've had it pre-ALS diagnosis. I did get another MRI on it two years ago that noted "reduced bulk." Interestingly, standing in the deep end of the pool and doing the breast stroke motion helps a lot. I also sit on a pool noodle and move my arms continually for 45 minutes and that increases my ROM a lot and doesn't seem to make the pain any worse.

My big pain areas are still back and legs. Both muscles and joints. Apparently, the nerve roots are inflamed.

Kevin, I keep testing myself, especially the breathing. In fact, I think I tested my MVV so rigorously, I made my lower back hurt more. Pre-ALS I had a grip strength measurement tool because I played golf and used it like you would a soft ball to improve my grip. Now I use it as a testing device.

Lisa, I'm taking Theracurmin, too. I started taking another brand back in 2016 and emailed Bedlack when I heard there was going to be a trial. He told me to keep taking it so I increased the dose to two a day. One is the cheaper stuff and one is the Theracurmin. I don't know where that man gets his energy but he is amazing and so positive. I hope you make it up North and have a nice couple of months. Beautiful time of year. I hate Covid so much.

Jessie, Hope you find good replacements and glad you're enjoying the bubble.

Lisa, I can relate. I'm in the pool for an hour then come in exhausted. Since Ace broke his leg I've been getting up at 7 to feed him and then taking a very short walk before breakfast. After breakfast I play iPad games or watch TV until 11:30, then in the pool. I've been going in my room at around 8 and fall asleep before 11. My activity tracker tells me I'm getting pretty good sleep but I do wake up for a bathroom trip at least three times during the night. I'm a night water drinker. I stop eating by 4, then only drink water or maybe some watermelon.

I may have to change my habits, but not today and not tomorrow.

Kristina, if you're reading this, you are the best and your kids will be very proud of you.