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

wmilo

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Feb 14, 2018
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PA
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Zelienople
Lisa, glad to hear you had a good visit to the clinic. We have participated in that form of treatment since I was diagnosed (3 years), and are happy with how it works.

@loridair, glad you are able to be outdoors and spend time with family. Those things are so important. And I think you are going to really enjoy the power wheelchair.

Highs in the 30s and overcast here lately, and I haven't wanted to go out. Although chair-bound now, I'm still able to do a few things and I feel blessed in very many ways.

Best to all.
 

KimT

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South
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The Beach
Good afternoon everyone. I got a Roomba yesterday!!!! I've not used it yet because three days ago Fred swept the whole condo and the following morning I mopped it. The pain and exhaustion from just mopping it inspired me to get the Roomba. So now it's plugged in, I've downloaded the software and it's docked. I like that it automatically empties. I'll probably run it in a few days. I was hoping I wouldn't have to move too much furniture but there are a few prep things we must do before we set it loose. I have a very low bed because it's adjustable but I think this contraption will be able to make it under as long as all wires are pulled out and placed on top of the bed. The condo is all tile with no thresholds so it should be able to get every room.

I suspect it will pick up mostly sand from the beach and hair from the dog. For a little guy, Ace sure sheds a lot. I found out it was a breed trait after I bought him.

I also placed an order from Misfits Market last week. It's all organic food that is either too small, too large, or doesn't look right. Everyone who has ordered it seems to be delighted so I'll just wait and see. I'm not very inspired to cook these days, but maybe getting this shipment will force me into cooking. Not much else to do in a pandemic in a State where there is no organization in getting the vaccine.

Hopefully, we'll be better served after January 20th.

I hope everyone stays safe, gets vaccines, and continues to wear masks.
 

swalker

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Dec 11, 2014
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DX MND
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07/2014
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CO
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Vail
I continue to do well and continue to spend too much time dealing with insurance matters!

This week, Southwest Airlines is (via National Seating and Mobility) supposed to drop off my finally-repaired Permobil C500 wheelchair. It has been a year since the initial damage (on flights to Ohio and Texas) and I am looking forward to finally being able to put that wheelchair back in service.

I still don't have a working Permobil F5 wheelchair (it was stolen and damaged over Thanksgiving 2019). In August 2020 I took delivery of a replacement, but it died on the first ride. I am still working through the process on that one, but I think we are at a point where NuMotion has stopped returning my phone calls.

As I have said before, I am really glad that I have a wheelchair collection!

On Monday we took a very pleasant trip to the storage yard where we keep our motorhome. I discovered that I can still make it into the motorhome on my own:)! We were able to fire up the engine, start the generator, and turn on the heat (it was below freezing!). Everything worked. There was too much snow to try to get it out of the storage lot and drive it, but it was nice to check things out. It was great to be out of the house and piddle around on it for a bit.

We were contacted by our doctor, who told us that at the end of the day there were sometimes some unused vaccines that needed to be either used or disposed of. They asked interested, at-risk folks to stop by near closing time in case there was some available. We got a bit excited about this, but we then received an email asking us not to show up. Apparently, the left hand does not quite know what the right hand is doing.

I am in Colorado's phase IIa for vaccinations. This week, they expanded the phase 1b group. So now, I have to wait for 1.3 million more folks to get vaccinated before they make their way to the phase IIa folks. They have vaccinated about 180,000 so far.

Steve
 

nona

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I've been watching the second impeachment proceedings. I'm glad these four years are almost over though we have a long way to go to fix what's broken.

I am on the mend from the UTI, I think. I'm hoping I don't have to give up the catheter because it is so convenient. My body loves being properly hydrated.
 

KevinM

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Mar 30, 2019
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208
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PALS
Diagnosis
06/2019
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FL
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Tallahassee
I’m am so glad to hear from so many of you good folks! Keep it going! My mood has improved quite a bit after reading all the posts.

Steve, we have a huge driveway so I parked our coach here at the house. When my wife taught math full time and before my diagnosis, I used to help her grade papers and loved going out to it on chilly (for us) mornings, turning on the heat and a silly game show on the tv, drinking a hot cup of joe, and grading away. I just loved being in it even when we weren’t traveling. K
 
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blitzc

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Apr 20, 2018
Messages
394
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PALS
Diagnosis
01/2018
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US
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OH
City
Massillon
Wednesday Greetings Everyone!!!
Like Kevin, I need all of you to get my endorphins roaring. Each day is full of enough frustration and sadness due to this disease along with concerns for our country. keep helping us all smile! :)

My hands hurt so much from typing, so I will keep it brief...

I got a call yesterday from my neurologist regarding getting a vaccine. The governor of Ohio opened up people with illnesses like ALS to group 1B. They sent me a link to get registered at UH in Cleveland for the week of Jan. 25th. Link is not operational yet, but I remain hopeful.

My sprained ankle/foot is mostly healed but I still am experiencing lots of swelling from knee down to toes even with elevation all day and compression socks. The PT believes I had a hairline hip fracture due to the pain I was experiencing. Good news is that the hip pain is going away with just problems lying in bed. I am able to walk a few feet with the rollater. My days on my feet are pretty much gone.

My doctor believes that COVID levels are too high for in-person clinic next month. Another telemed clinic appointment.

Great week for the Cleveland Browns! 🏈🏈🏈🏈🏈🏈 Go Browns, Beat the Kansas City Chiefs!

Keep checking in. Have a blessed week!
 

lisa g

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FORT PIERCE
Cathy glad to see your on the mend. Great news for the vaccine hope it goes as planned, knew I should have stayed in Ohio 😉.

As far as the Browns game, hubby and I will be rooting on opposite sides him for the Browns and myself in my Mahomes jersey. I'll be sure to send you a picture 😁
 

Fusia

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Oct 26, 2019
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08/2019
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MT
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Big sky country
I definitely agree with Kevin and others - I get my good juju from all of you!

I went to my ALS clinic last week for my quarterly visit. My respiratory numbers were still good, got a new OT order (since I hadn't been going to OT for a while), and got the order started for a hospital bed. Now, I need to talk to a couple of DME's to determine which one I want to use for the bed. Unfortunately, strength in my hands and arms continues to decline (1s and 2s), legs in the 3s and 4s.

Several weeks ago, one of my home health caregivers talked to the County health department who said that she could sign up herself as well other caregivers she worked with and their care recipients for the vaccine. This did not sound right to me, since Tier 1A was to be just for healthcare workers and some first responders. Sure enough, I found out today that I am indeed in Tier 1B, so I need to wait a bit longer. But, at least my caregivers are getting their first vaccine tomorrow. I'm hopeful that it won't be too long of a wait for me.

I'm looking forward to going to our local hot springs early in the morning this Friday - it's really beautiful when it's still dark and there are almost no people there. I'm attaching a photo from the last time I went a few weeks ago. Even though the Christmas lights will no longer be on, it will still be beautiful and peaceful.

Have a good week everyone.
 

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EricInLA

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Oct 20, 2019
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01/2020
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CA
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Los Angeles
Reporting in from Covid headquarters. . . our numbers and hospitals continue to be a disaster here in Los Angeles. I haven't figured out why that is - people around here are generally conscientious about wearing masks. Go figure. But I'm leaving town (again), this time driving up to Mammoth Mountain. By hook or by crook, I'm going to get myself onto a snowy mountain with my snowboard while my legs can still handle it! I actually feel safer being outside the Los Angeles area, as bad as Covid is here. I'm still a long ways away from getting the vaccine. My wife is actually higher on this list, working as a counselor in a school. Maybe I'll get the Healey Platform drugs before I get the vaccine.
 

KevinM

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Mar 30, 2019
Messages
208
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PALS
Diagnosis
06/2019
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US
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FL
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Tallahassee
Happy Wednesday, everyone. A truly special day indeed, as it always is with the transfer of power that is the cornerstone of our great democracy.

Still able to do everything without assistance, for which both my wife and I are thankful. Now if I could get control of my constantly aching, painful shoulders, neck and back. The only thing that works is one hydrocodone at noon, which deadens the fasciculations and pain for 2-3 hours, and some THC/CBD oil in the evening.

Oh, and if someone could suggest a way to turn off the electrical current that keeps me twitching and vibrating every waking moment, I would be In their debt.

Love to hear from as many of you as possible. Best, Kevin
 

lisa g

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FORT PIERCE
Great day indeed Kevin!
Are you taking any magnesium for pain? The day after my clinic appointment I was so sore. While testing my muscle strength the neuro was using his body weight against my resistance. We were both breathing heavy in the end. Anyway I was in so much pain the next day that I took hydrocodone at 4 and another one at 11:00. Yes it took away the pain but made me so nauseated I stayed in bed the next day.

The weather has been gorgeous, I've been going for a 2 mile walk every morning. My legs feel good and stretched for the rest of the day after that.

Still chasing the covid vaccine. Still can't get a straight answer when I'll be eligible.

Hope everyone is enjoying the day as much as I am.
 

KevinM

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PALS
Diagnosis
06/2019
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Lisa, magnesium supplements have given me some GI issues, but I do get some with my daily multivitamin. I had been using magnesium Shea butter cream in the evening, which helped a little. Might go back to that.

So glad to hear about your 2-mile walks! I take our sheltie for about a mile walk every morning, and it helps me mentally and physically. Best, K
 

nona

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02/2015
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NH
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NEW LONDON
Oh what a day it is! My caregiver and I were teared up.

I I'm sorry about your pain, Kevin and Lisa. I hate having to take the strong stuff. I get by with tramadol as needed for my neck and right leg.

I'm feeling more comfortable and at ease now that I'm under hospice care. I want to and think I can live longer this way. Now that the UTI is gone, I can appreciate the catheter for giving back the time and energy it took to transfer and sit on the toilet 6-8 times a day, as well as the ability to hydrate adequately. Now if I could only go #2 more often than every 7 days...
 

KevinM

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PALS
Diagnosis
06/2019
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Tallahassee
So good to hear from you Jessie, and that the UTI is gone. I have a bladder fistula that makes me prone to UTI infections, so I can relate.

I actually like the narcotics. I only take one per day, even when I could do with more, so that I don’t degrade the pain relief. And for 2-3 hours, my twitches diminish, my shoulders and neck stop aching so much, and I am relaxed. The problem is that my neurologist has to constantly do battle with the medical community oversight that is driven by the opioid crisis. I told him that the least concern I have, as a terminal patient in pain, is worrying about developing dependence. He said they don’t care if you are terminal or not, it is a battle.

Reminds me of a conversation I had with my my fathers doctor in the last years of his life about 13 years ago. He had aortic stenosis that was inoperable due to extreme calcification, and his kidneys were slowly failing. He also had very significant orthopedic pain, and when I pushed for adequate pain medication, the doctor replied “well, I’m concerned he might develop a dependence.” I had to take a deep breath, otherwise I would have knocked him out right then and there. Did he really think my family was the least bit concerned about that possibility given his terminal condition and constant pain? End result was he got a prescription, and stayed relatively pain free until his death a year later.

My attitude is that terminally ill patients should be given whatever the f**k they need. K
 
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