PALS ROLL CALL NEW THREAD (PALS ONLY) Wednesday if possible or whenever

blitzc

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Nona, I'm so sorry about the kitty. Your stories of him were so special. ❤
 

KimT

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Nona,

I'm very sorry you lost your little one. It breaks my heart.

I used to shop in Burlington. It was less than an hour away and my small village had no stores. It's a great place.

Well, today started out with my trying to walk 1/4 mile on the treadmill. It hurt my knee and back. Then I decided to go in the pool. It was cloudy but the water was still 88 degrees and the air was in the 80s. I usually plan an hour in the water. After about 15 minutes, it started raining very hard. The two other people got our and scurried back to their condos. I got out and moved my stuff under the covering and went back in. There was no thunder and, after about 15 minutes of blinding rain, it stopped. It was so bad I had to take off my glasses because I couldn't see. But I stuck with it until it started again. I ended up getting about 50 minutes in before surrendering. Tomorrow looks like it'll rain all day so I'll probably go in for blood work and return something to Amazon.

My back hurts but I'm resisting any medication until my CBD at bedtime.
 

swalker

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I am devastated to hear of your loss. We lost our beloved cat to kidney failure earlier this year. My wife wanted to get a new kitten immediately, but I told her I just needed some time to mourn.

She has worked diligently to find some new kittens and they are schedule to join our family in October. We are looking forward to the new addition, but I am still mourning our previous cat, who was absolutely wonderful!

Steve
 

plcare

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Mar 5, 2019
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PALS
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03/2019
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N
This week has been a blur and I'm out of whack after my little buddy was hit by a car on Monday. He was rushed to the vet by the fire department but he didn't make it. He provided a lot of joy and humor and my apartment feels lonely all of a sudden. Some friends are taking me to Burlington VT this weekend for a change of scene.

Cathy, thanks for giving us Sox fans a couple of wins! Now go beat the Yankees!
Nona,
So sorry to hear about your cat. My little dog never leaves my side and provides more comfort than I can explain.
 

KarenNWendyn

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OR
My little dog never leaves my side and provides more comfort than I can explain.
I get that. I love my dog to bits. Losing a beloved pet is hard enough. And when you have ALS on top of that. It’s unimaginable. Sending good thoughts to you Nona.
 

Scotiaspirit

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Nov 21, 2015
Messages
173
Reason
PALS
Diagnosis
11/2015
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CA
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Nova Scotia
Nona, sorry to hear the loss of your kitty. Our pets are members of our family and we miss them when they are gone. I am sorry for your loss. 💛
 

Signe

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Aug 17, 2017
Messages
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PALS
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04/2019
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IA
I started today out on a low, I slept without my bipap cause I fell asleep before putting it on. Then my dad came, he always makes me cry, and my legs have been hurting for 2 days without relief. But then I decided that I was not going to be blue or wimpy about this so....I booked plane tickets to London!! I'm going to go see Stone Hedge. I know I'm crazy but I decided I needed something to look forward to. My sister is traveling with me this time so a little sister bonding time is good too.
 

Nikki J

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Good for you Signe. If you want any input about London let me know
 

Doglady

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126
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PALS
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04/2018
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Minnesota
Oh, Nona. I’m so sorry about your cat. They are such sweethearts. Signe- glad you are still traveling. Stone henge! That will be so cool. We went to a new play yesterday at our local wonderful theater, the Guthrie. It’s a beautiful modern building (totally wheelchair friendly) and they do such a good job. It was fun. I’m participating in a study my clinic is doing to compare the effectiveness of two types of breathing exercises. It will be interesting to see the results in a few months. Everything else pretty much going as expected and ok.
 

Signe

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PALS
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04/2019
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Doglady let me know about your breathing exercises. I'm bulbar onset so my breathing is always an issue and with my smoking history well...that's not good. I can get around pretty good. I walk ok anyway but I have an electric power wheelchair I traveled with due to breathing issues. I also use a cane on uneven ground as I'm getting a little bit of foot drop.
 

Doglady

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Hi Signe- Yes, breathing is so important! Mine is not too bad but I do use a biped at night. I assume you have one too? So, here's the deal...the study is comparing two configurations of some simple pieces of equipment that you use to exercise your lungs. It's a new invention actually. In one you exhale and push air into your lungs with a ball like apparatus and then you blow that air out forcibly though the attached mouthpiece that has a pressurized tube to make a little "toot". Only one system has the ball but both have the mouthpiece and pressurized tube. I do 10 of these 3 times a day for 5 days per week and then take two days off. It only takes a few minutes each time. The exercises go on for 5 weeks. So of course they are measuring your breathing capacity before, during and after the test period. They already think either of the systems will help but they want to know which is better, so there is no control group. Just two groups using different configurations in a blind study. I talked to a woman in my support group who had already finished her part of the study and she said her breathing did improve. You're allowed to keep the equipment when it's over and continue to use it if you want. The study should be complete by the end of this year with results expected to be written up early in 2020. The study is being done by my clinic. They are measuring effects on breathing and swallowing. I think it's pretty cool to think (if this proves to be helpful for more than one person!) that there might be a way to improve or support breathing ability in PALS that will be available to everyone in the near future.
 

Signe

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04/2019
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Yes I hope this is helpful. I do have a bipap for night now. My AHI averaging 44 for the last 30 days. So I'm interested in your breathing study. Good luck and i hope it strengthens you right away.
 

KimT

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Hi All,

There was a trial on breathing a few years ago and it showed improvement in MIP with breath training. I have one of them and actually have the one Doglady describes but that wasn't the one used for the study. I discovered using my cough assist machine in reverse helped expand my lungs. I bought measuring equipment to test MEP, MIP, and SNIP and another device that will test FVC, SVC, MVV and a bunch of other numbers. Now I can track my own breathing at the same time each week (best on empty stomach first thing in the morning for me) without operator error or differences in fatigue. If you go to ALSTDI we talk about the specific equipment, results of the study, and how it is working for us. I believe the thread was started in late 2016 or early 2017.

Others use(d) breath stacking to achieve similar results total lung capacity.
 

Doglady

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Messages
126
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PALS
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04/2018
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Minnesota
Thanks for that background, Kim. Very interesting.
 

mytmouz

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Joined
Aug 17, 2019
Messages
12
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
I had a breathing test today, apparently for a baseline. At least I got out for a while...
 
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