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

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,371
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Today was very sad for me. I attended an ALS support meeting via Zoom. The presentation was from a company that provided health care. When I asked them about the skilled care Medicare provides, they said they didn't take it and they didn't know anything about it. A lady from our chapter who works for hospice and helps with the meetings asked them if they would work with PALS to help locate affordable services. I asked them if they could provide me with their rates and they said the rates depended on where the PALS lived and couldn't even give me an estimate of a CNA.

I remember back when I first posted here we had a discussion about finding our own. I have the connection with the college. I put it out there at the meeting and they said they were working with the college. We have a few caregivers for hire in the area and I think they charge around $15-$20 depending on what service you need.

Being without a CALS and knowing nursing homes in my area don't accept ALS patients, even if they aren't on a vent has me wondering if I should start looking now. I can still take care of myself, my place is set up for either a ceiling track or hoyer lift but I've noticed much progression during the past six months.

I did meet a man who is also lower dominant and has been living alone for 11 years post-diagnosis. He is a vet so he will have good benefits to see him through.

On a positive note, Virgin River (Netflix) starts today. I just finished up The Man Who Fell To Earth and really enjoyed it.
 

bhg

Active member
Forum Supporter
Joined
Sep 25, 2017
Messages
66
Reason
PALS
Diagnosis
09/2016
Country
US
State
California
City
Cupertino
Just had my ALS Clinic video chat. All I wanted was to see the Neuro to keep him up to date and Pulmonary guy re mask issues. Lasted 15 minutes. Beats the over-4-hours in pre-COVID days, which included hiring paratransit for $250 just to get us there.

Kim, that’s tough. Yes, start looking now. Wish I could suggest something. Out here even the agencies are having difficulty finding workers. Sounds like your place would be perfect for a live-in.
 

NekoiStar

Active member
Joined
Apr 16, 2022
Messages
36
Reason
PALS
Diagnosis
05/2022
Country
US
State
MT
City
Billings
Hello again,

I went to see two movies with my Dad this week, we saw Thor: Love and Thunder, and then Top Gun: Maverick. Both were excellent and I recommend them if you're into those kinds of movies.

I am currently packing a bag to prepare for my flight to Portland, Oregon, for my 2nd opinion at OHSU. I have read the 2nd opinion guide and am grateful for it's advice on how to prepare for this 2nd set of poking and prodding. I know the odds of this being overturned into something else is tiny, at best, but I can hope. In the event they do agree it is ALS, I will calm my heart down and settle in for the long haul.

I love you all so much, if I didn't have this community and my family I wouldn't be here right now.

Wish me luck!

- Joanna
 

KevinM

Senior member
Joined
Mar 30, 2019
Messages
536
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Wishing you good news, Joanna. We all care.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,371
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I'll be thinking of you, Joanna.
 

Aaronmandevill

Active member
Forum Supporter
Joined
May 7, 2022
Messages
72
Reason
PALS
Diagnosis
07/2022
Country
US
State
TX
City
San Antonio
Living in the moment is the only working for me right now Joanna. Hope you can relish every minute! I’ve been out eating delicious foods and watching movies as well, while we can!

Learned to make homemade sushi last night.

Tonight was baked crab legs.

Earlier this week I went to a seafood restaurant and got a 4 pound lobster!
 

KevinM

Senior member
Joined
Mar 30, 2019
Messages
536
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Good for you, Aaron! We have some really good seafood restaurants both in town and at the coast. With scallop season here our daughter and her boyfriend have been out a couple of times and brought us some delicious bay scallops. They are smaller than sea scallops but tastier in my opinion, and the perfect size for a variety of dishes.

I haven’t checked in for a bit, and I continue to have a very slow progression. Still mobile, good use of arms and hands and no Bulbar issues. We will be traveling to Jacksonville at the end of August for an in-person visit with my neurologist, the first in almost a year though we have had several zoom calls. I hate those visits because the only news will be how much more my muscles have weakened.

Today my wife started back to work as a middle school teaching assistant for special needs kids, and I already miss her terribly. She has recovered very well from her major surgery in mid-July, but she still tires easily by afternoon. She loves working with the children but I have been a bit forceful in urging her to take some afternoons off for the next 2-3 weeks if needed.

Keep hanging in there, everyone. Kevin
 

KevinM

Senior member
Joined
Mar 30, 2019
Messages
536
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Joanna, when you get a moment please let us know how your second opinion went. Best, Kevin
 

wmilo

Distinguished member
Forum Supporter
Joined
Feb 14, 2018
Messages
203
Reason
PALS
Diagnosis
10/2017
Country
US
State
PA
City
Zelienople
Hello, everyone. I have been MIA for a while, but I am still here.

We had two family visits over the last few weeks-my sister and her husband and daughter were here for a week at the end of July, and then my son and his wife and two children (ages three years and 20 months) were here for a long weekend last week. I am sorry that I can't pick up or hold the grandchildren, but they seem to be able to see the person sitting in my PWC, which makes me glad.

Since I had the stomach bug in June I have stopped using Colace for bowel regularity and have begun using dried prunes and Metamucil fiber supplement. I am having a lot less intestinal discomfort since stopping the Colace and things seem to be working pretty well. (I'm not recommending that anyone not use anything that is working for them; this is just my personal experience.)

I am in the process of converting from IV Radicava to the oral form. Two doses so far with no side effects. I posted more about it on the thread here Oral Radicava.

Kevin, I'm glad that your wife's recovery from her surgery has gone well.
Al (@FF58), thanks for your comment. you are right on.

We are having an unusually cool August so far for this part of the state, with temperatures staying in the upper 70s. I don't think that the tomatoes will like it very much, but it is nice to be able to have the windows open.

Best regards to all,
 

KevinM

Senior member
Joined
Mar 30, 2019
Messages
536
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
So very good to hear from you Bill. I think of you often. Just having the young ones around lifts the spirit, even if you can’t pick them up.

Enjoy the cool days. Except for one intensely hot couple of weeks in June, we have had a cooler than normal summer (for N. FL) because of so much rain and mostly cloudy afternoons.
 

Firefighter58

Senior member
Joined
Jun 21, 2016
Messages
694
Reason
PALS
Diagnosis
05/2014
Country
CA
State
ON
City
Oakville
Supposed to be going into a nursing home placement this Friday, PAL friendly .will keep you guys updated as to how that is going.
Al
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,322
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I hope the facility is as you expect and that you will be comfortable I know you have been planning this for a while
 

lisa g

Senior member
Joined
Apr 17, 2019
Messages
518
Reason
PALS
Diagnosis
04/2019
Country
US
State
FL
City
Fort Pierce
Al, hoping the transition is easy and you get the proper care you need.
 

bhg

Active member
Forum Supporter
Joined
Sep 25, 2017
Messages
66
Reason
PALS
Diagnosis
09/2016
Country
US
State
California
City
Cupertino
Checking in. I too am interested in how things go, Al.
 
Top