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

Signe

Active member
Joined
Aug 17, 2017
Messages
82
Reason
PALS
Diagnosis
04/2019
Country
US
State
IA
Karen, you be careful. I cringed when I read the word rescued.
 

Signe

Active member
Joined
Aug 17, 2017
Messages
82
Reason
PALS
Diagnosis
04/2019
Country
US
State
IA
Yes it is Wednesday, boy the fall has gone by fast. We're having snow showers here today and it is going to be a long winter I think. My son is improving from his infection and will be able to come home tomorrow, but still needs to have daily iv vancomycin at the local hospital.
I also have a question. Next week is my second ALS clinic appointment. At the first appointment they said it was a meet and greet appointment, though I saw several different services, speech, respiratory ect. Everyone was more just introducing themselves to me that anything else, I thought. So my question is do your neurologist and others assess you, examine you, at these appointments or just ask you questions and if you have concerns ect. This time I am having a pulmonary function test before the appointment and an overnight spirometry test. Also after the clinic appointment I agreed to having a spinal tap for a research study. Any thoughts or experiences to share, I am beginning to think that the two days and cost of hotels, meals, travel ect are a lot if they really aren't "doing anything". However, I also have a problem getting any other doctor as my local clinic will be closing Dec. 14, so I just don't know what to do for an md if I need one.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,481
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Karen, I've been thinking about you and the caregiver situation. I hope you have success in finding one and some backups, too. I hate this disease and, what's worse, is seeing a 10-year old girl diagnosed with it last year on a Facebook fundraising event to get a van. Every day I get asked how I'll be able to afford to stay alive with 24/7 needs. Most don't like my answer.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,857
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I have made a thread for Signe so her questions can be answered there and better seen. Thank you. Her post copied instead of moved and I am afraid to edit this one in case the other gets lost
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
236
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
My husband was off today, so he took me to the YMCA pool to walk and stretch. Amazing how much easier it is to move after pool time-not so stiff and tight. I taught my son how to make hummus tonight. Last week it was apple crisp that he wanted to learn how to make. Warms my heart! ❤

Karen, I'm so sorry for the new difficulties you are now experiencing. I'm sending hugs to you...🤗🤗🤗...did you feel them? At least that is something I can still do!
Kim, I've had you in my prayers as well. I'm glad you made it to the pool.

Happy Halloween 🎃
 

Bill Bog

Forum Supporter
New member
Joined
Oct 27, 2019
Messages
7
Reason
PALS
Diagnosis
08/2019
Country
US
State
OH
Just another new guy here trying to figure out how to get thru this twilight zone.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
236
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Welcome Bill to a wonderful group of folks who are also navigating the same "twilight zone". Sorry that you have to be here.
I'm a Buckeye as well-Canton area.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
941
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
I just finished off a project that began in May. After months of decline during which she didn't have a phone I got into my Mom's apartment. THe level of dementia she had reached was shocking. The apartment looked like an episode of hoarders. My brother who lives there was completely oblivious. I physically lifted her off the toilet, put her in my wheelchair and took her to the hospital. She was 3 weeks in the hospital being rehydrated and fed something other than potato chips and diet pop. During all this the apartment had to be brought up to living standards and usable with a walker. We got her home with 1 hour of homecare morning and evenings and meals on wheels delivering once a day at supper. During the month home she lost 15 lbs and was again severely dehydrated. There were also repeated frantic searches for her as she would go out and my brother would have to be called to go look for her. In the beginning of August we got her into a nursing home. Amazing what saying we want a private room does to shorten the waiting list. She has always been a private person. Since then we have been going through all her possessions and empty her apartment, without any help from my brother who lived there. Today we moved my brother to where he is renting a room.
Who am I kidding . My wife did all the work. While working a full time job, not to mention the boat anchor I've become. I stand in awe of her ability to manage all this. I owe a debt of gratitude I may never be able to repay.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,481
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Vincent, I'm so sorry both you and your wife had to go through all this but glad your mom is now being taken care of properly. I'm sure you wife doesn't consider you a boat anchor. You would do the same for her.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,754
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Happy Halloween from the Halloween parade in my community.
B6188017-7EF1-4A5F-8AEA-E845CBB85D12.jpeg
I’m the zombie in the pwc and my CALS is the zombie on the right. I rode with her samba band as they marched and danced through the parade. The band is Samba Like it Hot. We tweaked it to Zombies Like it Hot.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,481
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
The mouse :ROFLMAO::LOL::love: Love the theme.
 

Signe

Active member
Joined
Aug 17, 2017
Messages
82
Reason
PALS
Diagnosis
04/2019
Country
US
State
IA
Well it is Wednesday again. We had 4 inches of snow since last night. Yesterday I was at the ALS clinic in Rochester for the 2nd time. I felt it was a much better experience for me than my first time there. Maybe I was more prepared for it or something. I also had a pulmonary function test. I'll try to share some numbers. PFT: VC = 73%, MIP = 24.6%, MEP = 24.2% all of predicted values. So even though I don't understand them really, I understand that my breathing is not as good as it was in May. I'm still up and around and may try to clean off my sidewalk later, we'll see how I feel later though. I have always loved winter and the freshness of new snow, but this year it's a bit early for me. Hope everyone is doing well!
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,481
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Windy day here. It's still pretty warm but getting more in line with the season later this week.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
87
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
Just returned from a week in Sedona, Flagstaff, Prescott, and the Grand Canyon. Except for one really cold, windy day, the weather was perfect, the colors were out in full, and we had a great time at fine hotels and restaurants. Sedona is everything I had heard and more, but definitely going through growing pains as the valley is filling in with strip malls and huge homes that will probably be used a couple of weeks each year. Definitely one of the top ten most beautiful U.S. towns we’ve seen, and we have traveled pretty much everywhere in the country.

I tire more easily, so we paced ourselves on modest hikes and walks around town. Can still do everything, but my damn muscles and joints ache constantly, especially if I push it too much. I have some minor IBS GI issues, so afraid to take Advil or other NSAID meds. The THC/CBD oil helps, but not to the level I need.

Did I mention that I really hate airports and air travel? On the trip home we were next to a hacking, nose blowing fiend. I practically washed myself in hand sanitizer every ten minutes, and barely breathed in the whole way back! Getting sick is one of my worst fears right now.

As always, good to go, good to be home. We really missed our sweet sheltie Rosie, but loving daughter stayed at the house and took care of our high maintenance girl. Best, Kevin
 

mytmouz

Active member
Joined
Aug 17, 2019
Messages
33
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
Spending my day watching a neighbor tear down my shop for the materials.
 
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