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

Signe

Active member
Joined
Aug 17, 2017
Messages
88
Reason
PALS
Diagnosis
04/2019
Country
US
State
IA
City
Lansing
OOPS!!! Sorry - The second one was not the link I intended to send. Although, those enjoying bagpipes, drums and handsome, stately men in kilts, may be glad for it.

I'm lucky our New Year hasn't begun so I can still make mistakes. We're all thankful for 2nd chances!

Here it is..... Auld Lang Syne (Even silence has a voice and a gift to give).

Your oops was great, I just love the guys in kilts...😉
 

Signe

Active member
Joined
Aug 17, 2017
Messages
88
Reason
PALS
Diagnosis
04/2019
Country
US
State
IA
City
Lansing
Happy New Year 2020
Just sitting here remembering 2019, guess I really had a great year...other than the diagnosis part. But seriously I lived last year like it was my last one, and I really enjoyed it. I'm not certain what is ahead, 2020 is full of challenges but let me always live every day as if it is my last one.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,135
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
Happy New Year. We have had my wife's niece and husband with us for Christmas. My wife's twin sister and husband are living in our town for the winter ski season.

I skipped Christmas Eve service this year due to the potential for exposure to germs. We live in a resort area and normally have about 20 to 80 at our church services, but 500 to 600 attend the Christmas Eve service, bring together a collection of nasty germs from all over the nation and the world. It was hard to miss the service after all these years of attending, but I know it was the right decision.

Despite my efforts to avoid germs, I have managed to come down with a respiratory bug of some sort. We are watching it closely!

I continue to adjust to using the non invasive ventilator, but still have trouble when we stop the machine.

Steve
 

mytmouz

Active member
Joined
Aug 17, 2019
Messages
61
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
City
Pelahatchie
I got nothing...
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
180
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
Happy New Year everyone. My son and his wife left yesterday after a great visit. It was great to have him stay for nearly a week. Enjoyed every minute of it.

Otherwise, we are ops normal in the Heartland.
 

nona

Forum Supporter
Distinguished member
Joined
Oct 1, 2018
Messages
230
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
Happy new year everyone! Hoping for lots of positive change in 2020
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,593
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I think a lot of us missed Wednesday, including me!

My second eye surgery is Monday. I hope my heart stays calm and the procedure is uneventful.
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
163
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
City
Minneapolis
I definitely missed Wednesday this week. Had my quarterly clinic appointment, a short 3 day visit from hubby’s twin siblings with their spouses and now medicating a bladder infection. Resting up. Cold but sunny today! Doggies are all in good moods, as usual! Keep on keeping on!
 

BK2011

Distinguished member
Joined
Aug 2, 2011
Messages
192
Reason
PALS
Diagnosis
06/2011
Country
US
State
Florida
City
Clearwater
Wednesday 01/15/2020. Still here. Eight and a half years into ALS. Saw neurologist today and he asked me “when were you diagnose?” I told him and he said “Bill, you are in rarified air. I’ve seen patients with ALS alive that far in but none have been still vertical and in as good shape as you are in.” I don’t feel in particularly “good” shape but that’s probably relative and I’m thankful for whatever time I have. Wish you all as much luck and happiness as I have.

Bill
 

Nanders

Member
Joined
Nov 14, 2019
Messages
26
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
City
Chandler
Hello All,
Still pushing ahead... I’m progressing more rapidly than anyone expected. Just 2 mos into diagnosis & I've lost my ability to use my walker except for transfers, bathe or feed myself & my voice/speech is greatly diminished. I’m getting a PWC in a couple of weeks. My kids were starting to get a handle on things & then the rapid decline has sent my daughter, Aimee into total denial. My oldest son Michael is doing well understanding the situation & my youngest Matt who is the Paramedic who just stopped talking to me has come around several times in the last week to see how I’m doing & see if I need anything. I’m so grateful for that !!
I don’t know if this pace will continue but I’m at peace & will enjoy my family & friends for the time I have! Thank you all for your continued support & friendship as we move thru our journeys together!
 

mytmouz

Active member
Joined
Aug 17, 2019
Messages
61
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
City
Pelahatchie
Yet another trip to the Medicaid office for the last bit of the paperwork they need... For the 5th time...
 

Tkthiede

Member
Joined
Feb 25, 2019
Messages
12
Reason
PALS
Diagnosis
01/2019
Country
US
State
WY
City
Cheyenne
Things are going ok with me. The 19th will be one year since my diagnosis. Things are progressing but I feel blessed to still be talking, swallowing, still able to use my hands some and walking with a rollator. I’m trying very hard to focus on what I can do instead of what I can’t do. Some days are better than others! :)
Tammy
 

Dee Dee 0617

Active member
Joined
Nov 27, 2019
Messages
38
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
Hi, I'm here. I don't usually share tons about my experience with ALS. Umm. I live 8 hours away from my clinical support team, so I had a Skype appointment with my pulmonologist. She had received the sim cards from my machines and they have decided it's time to up the pressure. I asked her if we could talk about a feeding tube and she said that I had declined that when they had bought it up in the beginning. Hindsight is really 20/20. When I received my diagnosis I was with a friend, I had no idea. I couldn't believe it wouldn't believe it. My parents are gone, my son's have their own lives. I am an only child family support is non-existent. I didn't understand that what I was saying no to then meant no not at all . The love of my life died 19 years ago on1/13 I am at the mercy of my paid caregivers. She told me that because of my lungs that I would not be a candidate for that surgery, and when I could no longer take in nourishment orally I should call in hospice. I'm loosing it. I am in perfect health otherwise. I haven't fought this hard on my own, to be discounted so easily. Please forgive me I had nowhere else to go.
 
Top