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

KimT

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3,975
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08/2015
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South
City
The Beach
Ed, good to hear from you. Happy spinning!!!!!!

Jessie, I'm a big advocate of therapy animals so why not get a new kitty. Your old one will "tolerate" it until they become friends. Can't wait to hear stories about your new addition. I can't imagine life without a pet.

Kevin, so you're leaving the great State of Florida to venture into the "deep South?" I hope you get to see some pretty leaves while you're there. I wish I had traveled more before Covid. Stay safe.

Eric, you and I should have a contest on who can screw up their bodies faster than ALS does. I'm still doing some strength testing with the curls and grip trainers that I used for golf. I am glad you and your kiddos are enjoying the Lakers. Since I don't like any of the Florida teams in any sport, I'll root for your Lakers. These short seasons and accommodations for Covid have driven my poor brother to the end of his rope. He has dementia and his one pleasure is watching his favorite teams.

Tip, glad your therapy visits went well. Doing less? Easier said than done until our bodies stop us. Let the kids do the stuff you hate the most LOL

Ed, Prayers and positive energy for your PEG procedure. Won't it be good to just focus on the things that taste good and dump the rest down the tube?
 

Tom J

New member
Joined
Mar 29, 2020
Messages
5
Reason
PALS
Diagnosis
12/2019
Country
US
State
TN
City
Clarksville
Hi ya’ll, Tom here in TN. I was diagno on Dec 13, 2019 with bulbar onset ALS. I had lost a significant amount of weight and
could not swallow food at all. Had PEG surgery next day and suffered respiratory failure in the OR Which resulted in a tracheostomy.

So far I have lost speaking ability and communicate with a Tobli Dynovox Indi tablet and my iPad. I am nothing by mouth and all food, RX and fluid via PEG. I have gained 41 pounds in 9 months. I am ambulatory, can use bathroom without help, etc. I have fallen unexpectedly 3 times without major injury and now have a cane and a rolling walker. I have to sleep elevated.
Happy to have found this forum.....Cheers!
 

blitzc

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Apr 20, 2018
Messages
382
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
Happy Wednesday Everyone!

Jessie, enjoy that new cat/kitten and don't regret it for one moment. You deserve happiness and companionship!!!! We aren't gone yet-right? So live your life!

Kevin is taking attendance, so here I am! I need a drink tonight-more debates! Cheers to all! 🍻

Welcome Tom! Sorry to have you here, but you have found a supportive, funny, and loving group to help guide your journey.

Kim-How's the foot coming along?

Ed- Best wishes for smooth PEG procedure.

My husband and I are heading out next week on a road trip in the new van. We canceled the fall trip to Jamaica, so decided to make it a driving trip to see the colors and sights of Michigan. We will start in Frankenmuth, then up to Mackinaw City and across the bridge, and back down along Lake Michigan on a scenic drive called "tunnel of trees". Wish us luck finding handicapped toilets that my husband can take me into, hotels that are truly accessible, and restaurants without steps. ♿ Oh, I just realized I have pictures from last weeks trip out. Coming soon. Hands are done working now.
 

TippiLeigh

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Jun 13, 2020
Messages
59
Reason
DX UMND/PLS
Diagnosis
07/2020
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CA
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XXXX
So glad to see everyone checking in today! One thing I forgot to add to my update was at my PT appointment they said they’re recommending some sort of brace for my left foot/leg. Something that goes into my shoe and then straps on to my leg. Supposed to help with my walking. I forgot to get the name of the device. Just curious if anyone has used something similar and if you have any feedback on them?
 

Krismn

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Joined
Feb 25, 2020
Messages
17
Reason
Learn about ALS
Diagnosis
01/2020
Country
US
State
WA
City
Puyallup
I enjoy reading all of the updates. I don’t have much to share. I’ve been getting PT and OT. The therapists are great and have given some good suggestions, but it’s depressing to see the overall decline in function 😞.

Jessie- I hope you enjoy the kitten. I got a Boston Terrier puppy shortly before being diagnosed. She can be a handful at times, but it has been well worth it!
 

nona

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Joined
Oct 1, 2018
Messages
410
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
So glad to see everyone checking in today! One thing I forgot to add to my update was at my PT appointment they said they’re recommending some sort of brace for my left foot/leg. Something that goes into my shoe and then straps on to my leg. Supposed to help with my walking. I forgot to get the name of the device. Just curious if anyone has used something similar and if you have any feedback on them?
Tippi, I had braces like that on both legs and wore them for almost two years. They helped with foot drop but not with balance. This is me the day I got them. Seems like a lifetime ago.
 

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nona

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PALS
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02/2015
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NH
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NEW LONDON
Tippi, I found that they fit best with wide shoes like Keen, and the elastic no tie laces were key. Sadly, the shirt is too small for me now, but my father still wears his.
 

Nikki J

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Joined
Mar 22, 2012
Messages
9,368
Reason
PALS
Diagnosis
04/2014
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MA
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Boston
If you search for afo you will find more discussion. I still use one and swear by it for weakness. You will almost certainly need a bigger shoe for it ( longer and wider). Welcome to the world of ugly shoes 😢
 

TippiLeigh

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Jun 13, 2020
Messages
59
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DX UMND/PLS
Diagnosis
07/2020
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CA
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XXXX
Well, I've already stopped wearing heels and I'm only wearing tennis shoes and crocs now, so I guess I was already on the path to joining the ugly shoes club! 🤣
 

Krismn

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Feb 25, 2020
Messages
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Learn about ALS
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01/2020
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TippiLeigh-I can relate to the shoe problem. I can’t even wear regular tennis shoes anymore. My PT recommended Billy shoes which have worked out pretty well.
 

EricInLA

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Oct 20, 2019
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114
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PALS
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01/2020
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CA
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Los Angeles
I love that picture and T-shirt too Jessie. (sorry about your Celtics - we were supposed to have a classic bubble NBA Finals but your team didn't hold up their part of the deal!)

Kim, I like your new picture and haircut -- looks great (tho I do miss seeing Ace in that circle). You are so right about us screwing up our bodies before this disease does. At least we'll be doing it on our own terms!

Ed - Good luck with that PEG procedure. You'll do fine. I like your idea about eliminating the ads once you've voted. I'm getting inundated with e-mails. I should never have sent in a donation!
 

lisa g

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Apr 17, 2019
Messages
216
Reason
DX UMND/PLS
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04/2019
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FL
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FORT PIERCE
Sorry forgot to check in yesterday. These past couple of weeks have been a whirlwind. I mentioned that the respiratory therapist came on Sunday and brought a percussion vest and a cough assist machine. I've been using them and they seem to be helping. Tomorrow I have a CT scan of the lungs. Monday I have an appointment with my PCP then I have to go for a covid test so I can have an EES test on Friday. On Wednesday they're bringing out my trilogy machine. All this going on while going daily for my Radicava infusions. Had to get all this done now so we can leave for Ohio on Saturday. It will be nice to be up there for a few months with no doctor appointments.

Jessie I love the shirt.
Ed- good luck with your peg
Kim- great hair
Eric and Tippi- hope air quality is better
Cathy- enjoy Michigan
Tom- sorry welcome to the group
Nikki- I think we've all resigned ourselves to flat ugly shoes.
Kevin- enjoy your getaway
Krismn- smile 😃 there's still good days ahead.
Did I miss anyone?
 

blitzc

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Apr 20, 2018
Messages
382
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
Can't wait to see you Lisa! It's starting to get cold-end of next weeks 50s.
 
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