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

KimT

Extremely helpful member
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Joined
Nov 18, 2014
Messages
4,143
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi All,

Yesterday I had two doctors appointments, one was a podiatrist. He gave me another shot in the foot for plantar fasciitis. I hope the anti-inflammatory properties start working soon because, today, my foot hurts more than ever....probably from the shot.

Eric, my left hand is crazy, too. It's very noticeable for atrophy and the fine motor skills are bad. That said, I can still type.

I had my right knee MRI'd back in February and stopped to pick up the report. Moderate severity chondral delamination at the patellar apex to lateral patella facet. It first started bothering me in 2018 and, at that time, the MRI was negative. It hurts and that is what probably caused compensation on my left leg resulting in plantar fasciitis. I believe if I were heavy, I wouldn't be walking as much.

This week is beautiful and I'm headed for the pool. I like to go during lunch when few, if any, people are there. I've also scheduled another card game for tonight and one for Saturday. I'm so relieved most of my card-playing friends have had the shot(s).

Have a nice week everyone.
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
346
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Kim- sorry for the foot pain hopefully you'll get some relief.

The weather here cooled down here which cooled my pool to 73 degrees so no pool 😫 today. Hoping it warms up by the weekend.

I had my PT evaluation on Monday. Therapist was happy with my overall improvement. She said my strength improved from last evaluation in February. I need more improvement on standing on one foot longest time clocked was 15 seconds. I don't remember being able to stand on one leg very long prior to diagnosis.

I had an Easter egg hunt for my 2 year old grandson on Easter. The baby was content to sit and chew on a plastic egg while her brother was on the hunt. I enjoyed it as it may be the last time I can actually hide the eggs.

Not much else to report. Hope everyone has a good week.
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
273
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
City
Iowa City
Nothing much new here in Tucson. I had an ultrasound of my liver, a simple procedure. Hope it reveals what's going on--as I've said I'm unsymptomatic. My daughter and son-in-law got their first vaccines in NYC--a relief, they're around 50 so were waiting till now. Enjoyed watching the AZ women play their hearts out in the Final Four--Tucson daughter works at U of A. Disappointed but proud.

Ed
 

wmilo

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Joined
Feb 14, 2018
Messages
107
Reason
PALS
Diagnosis
10/2017
Country
US
State
PA
City
Zelienople
Partly sunny and low 80s in western PA. Hyacinths blooming.

Had a very nice visit with son/DiL and the grandchildren.

Lisa - good job on the PT improvement!

Best to all,
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
416
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
The calendar says April but the thermometer reads June- 81 degrees and sunny! I actually was too hot to sit outside and retreated to the shade of the garage for a couple hours. The flowering pear trees in our neighborhood opened up over night. It's beautiful! My daphodils and narcissas are opening today.

I had the PWC company out today to check my batteries. They are operating at less than 50% of expected power. That explains the inability to hold a charge. New ones being ordered. Hopefully next week this problem will be solved. It's tough when your only mode of transportation/mobility may not operate.

Lisa- great job on PT progress!
Eric- My sick day is next Thursday. I'm getting my second Moderna vaccine Wednesday the 14th.

Speaking of vaccines, Ohio is on the ball again! Kudos to Governor Dewine. He is sending extra doses and personnel to all colleges and universities beginning this week to vaccinate all college students( who want) before they head home for the summer. My son signed up yesterday and gets his J & J shot tomorrow. :D 🙌

Kim- I hope your foot improves! Enjoy the card games!
Bill- So glad you could visit with family. We had vacccinated family over for Easter. So nice not to feel scared for a visit.

Have a joyous week everyone!
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
278
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Hi all. Love the check-ins from everyone. I adore all of you (and that of course includes those who read but don’t post as well!)

Just returned from several days in western North Carolina. Weather was perfect, we ate some great food, and we did quite a bit of walking, so my legs still work okay but damn they—along with my back—were really sore the next day.

The trip up and back is a good amount of driving, even though we split it into two days, and I don’t think I want to see fast food again for at least a month or two. I have enough problems with my gut as it is. I used to be quite the road trip guy, but I’m much more comfortable at home now with my rather obsessive routine, not to mention easy access to the damn toilet.

Eric (aka the “snowboard master”) so cool hearing about your recent trip. I know the arm giving out was scary, but I have a feeling you’ll have good use of your left hand for a long time. Just pushed it too far with your Mom, and it let you know.

Lisa, if you read the forum, you should know that you’re not supposed to improve! So wonderful to hear. I’ve said before this standing on one leg test is a weird indicator because of individual variability. My wife has never been able to balance on one leg for more than a few seconds and she sure doesn’t have ALS. Best, Kevin
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
346
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Glad you had a good time Kevin.
And yes I did chuckle when the therapist said I was stronger especially when she tested my hand grip. She said anytime you want to ease up on your grip I need my hands.😲
 

Fusia

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Joined
Oct 26, 2019
Messages
109
Reason
PALS
Diagnosis
08/2019
Country
US
State
MT
City
Big sky country
Eric - Great to hear about your skiing, and I hope your "sick day" tomorrow is a "fun day" instead.
Kevin - sounds like you had a great road trip, even though it's tiring when we get out of our routines.
Everyone else - Glad to hear you've had good visits with family and/or have fun plans for this week to enjoy some good weather!

I went to my ALS clinic last week. Unfortunately, my NIF number dropped considerably, which i didn't expect. Because of Covid, that's the only respiratory test they are doing right now in clinic. The pulmonologist and neurologist suggested a BiPAP machine - since I live alone, using it BiPAP will require more caregiver time. So, even though I know most would suggest moving ahead with it, I need some time to get my head around it. At this time, I don't wake up with headaches, I don't feel any shortness of breath, and I don't feel any more tired then usual. I do know, though, that my back muscles and core muscles are getting weaker, so I assume the diaphragm is weakening…

I got a new joystick on my PWC, which is really not working any better for me than the old one. The new one is a long, thin rod but it just doesn't give me the control that I thought it would. I had a "MacGyver moment", thinking a dog's chuck-it ball would fit perfectly over the rod (the ball already has a hole in the top and bottom), we could cut the rod off at the top of the ball, then my hand would be able to fit nicely on top of the ball. It works great! The only issue I see with it is that any dog who loves chuck-it balls will be going after my joystick.😊

Otherwise, Spring is happening in fits and starts here. Yesterday, a friend and I drove out to the Madison River about 30 minutes away from where I live to enjoy a sunny, warm afternoon outside. She did a little flyfishing (I was living vicariously through her) while I sat on the bank and enjoyed a cold beer. Today, it's quite gray and quite a bit cooler, and we may get a little snow overnight.

I hope everyone has a good week!
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
278
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Thought I’d share a picture of me and Rosie at the Biltmore Estate a few days ago (and yes I wore my mask all day except for a couple of photos).

For those not familiar with the Biltmore, it was completed in 1895 by the Vanderbilts. This little getaway is the largest private residence in the country, a cramped little 178,000 sq. ft. of interior space. The photo actually cuts off about 1/4 of the building, but you get the idea.

I can just imagine a three person Molly Maid crew showing up and being told to do a thorough cleaning, including window washing, and could they please have it done in four hours...K
 

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Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,937
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
I don't post here much but just some thoughts.

I like my rollator, I feel secure and comfortable using it.
But, I don't like it... now having to use it. When I don't
use it... I use my cane and have to walk with baby steps.

Kevin., be glad... apparently you're not there yet. :)
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
278
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
I am glad, Al. Right shoulder and upper arm are weak, but still okay. Lower back is weakening, but not to the point it affects my walking yet. Glad to hear you can still walk with the rollator and cane, especially since you are much further into this nasty disease than I am.
 

nona

Senior member
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Joined
Oct 1, 2018
Messages
500
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
New London
I loved my rollator. In addition to the safety benefits, it was a place to sit and I could carry things in or on it. I attached a water bottle holder. Now my 102-year-old neighbor is using it, so it's been in service for four years. I wish it had an odometer.

Vaccinated friends came over for a movie last night. Today I've got the Celtics, Red Sox and Masters to watch. And a UTI to contend with. Again.
 

wmilo

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Joined
Feb 14, 2018
Messages
107
Reason
PALS
Diagnosis
10/2017
Country
US
State
PA
City
Zelienople
I liked the rollator while I could still use it.

Got my PWC stuck in some soft ground Thursday. Make a mess of the chair and the grass, and I fell while transferring to another chair. About 45 minutes on the ground with a couple unsuccessful attempts to get back in the chair (including a face-plant when I tried to be on hands and knees), until enough friends could be recruited to pick me up.

At clinic on Friday, I learned that my FVC declined from 71 to 45 in the past year. :(
Doctor recommending Hoyer and BiPAP. Sigh.

Sorry about the UTI, Jessie.
 

Fusia

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Joined
Oct 26, 2019
Messages
109
Reason
PALS
Diagnosis
08/2019
Country
US
State
MT
City
Big sky country
Sorry you had to deal with getting your wheelchair stuck and then falling. Around here, and I'm assuming in most places, you can call 911 and ask for a non-emergency lift assist. The fire department will come help - they are trained in this, and have various tools and devices to help if they need them. I've had to call them twice, and they are very gracious about it. It's also helpful to tell the 911 dispatcher that you don't want lights or sirens when they come to your house…
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
346
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Bill- So sorry to hear about your ordeal must have been scary. Glad you finally were able to be helped up. Falls are never easy. Have you never had to use a bipap? I had a cpap for sleep apnea for a few years. I just had a PFT and though I show no respiratory issues my pulmonologist switched me to a trilogy machine to stay ahead of any future issues. I hope it helps you.
 
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