CALS Roll call

Status
Not open for further replies.

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,549
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Chumpy, we're having the same problem with hands. I now wonder if that's why mine wears it less and less. The problem is, the less they wear it, the tired they are and the harder it is to understand why they should--but it's their journey, right? Acceptance--it takes sooooo damn many forms.
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Steve is also having lots of hand trouble. He drops seemingly everything at least twice a day. He uses a stylus with his tablet. We have gone thru a 10 pack because he drops and loses the.

Its frustrating having to pick up all the stuff he drops but it must be worse for him. I added ergonomic grips to the stylus. The are rubbery and make the stylus bigger
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,549
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Steph, add not letting our PALS see our frustration before we put a lid on it, because it only makes them feel worse, to the difficulties we face. I love my man with all my heart and soul, and it kills me when he sees me slip, because I know it kills him. One little piece at a time...

We have long handled grabbers all over the house, and Matt's gotten pretty good with them. I dread the time when he can no longer control them.
 

CiCi

Active member
Joined
Jan 8, 2016
Messages
35
Reason
CALS
Diagnosis
08/2012
Country
US
State
De
City
Dagsboro
Goose------I have an IPad with a cover and use a stylus that was always getting lost. I now have the stylus attached to the cover with a stretchy cord. Also use this for hubby's stylus for the bogie board that he uses to communicate. I think a piece of yarn would also work.

Claire
 

pdcraig

Distinguished member
Joined
Mar 2, 2013
Messages
101
Reason
Lost a loved one
Diagnosis
09/2012
Country
CA
State
ontario
City
oshawa
Not sure if I'm really late for this week or early for this coming Wednesday. What happened to January? Still here. So very tired. My Pals finally had to transition to being fed. His hand function has deteriorated to that point. I'm not sure which one of us took it harder. He's back on his Pipap during the day and now is having a bit of trouble swallowing.

In the bright side we celebrated our 17th anniversary on the 14th. I got him some chocolates to give to the ladies who used to share his dining room table. I think he was happier with that and the fuss they made over him than the sushi I brought for lunch.

Steve, sierra, nuts I love that CALS poster idea. I have also crashed my car. Driving home in a snow storm because his sister wouldn't spend the night with him. I think we could use the pile up of crashed cars for the backdrop. Then all of us with our various bumps, bruises etc in the foreground. I'd wear that t-shirt.

Scared, I'm sorry about your mother. You've had such a tough time, I hope you can find some peace.

That's all for now. Keep well everyone.

Paul

Prince of Persistence

=o0:neutral:0o=
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,699
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Paul, great to see you checking in.

Every little change is actually so big isn't it?

I'd wear that t shirt too!

Love your prince title and your crown is perfect!!!!
 

scaredwifetx

Very helpful member
Forum Supporter
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Paul, happy to see you posting. So sorry about your PALS progression but so happy to see that you can still enjoy special moments. Congrats on the anniversary. Tired... I get that.
Thanks for the kind words.
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Tuesday here but closing in on Wednesday. Things keep moving along...VA assessment next week.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,699
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
actually it's already Thursday for me xxx
 

KatieNBoyd

Distinguished member
Joined
Oct 17, 2015
Messages
147
Reason
Lost a loved one
Diagnosis
11/2015
Country
US
State
MT
City
Boyd
Checking in ...low key around here. Trying to stay ahead of things. There are wonderful friends and people always ready to lend an ear or a shoulder for me to cry on. Love them all.
 

scaredwifetx

Very helpful member
Forum Supporter
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Checking in. Tough day (Moms Birthday) and week but I am still able to keep somewhat of sense of humor and that's so important to me.

I am thinking of you all as it as been so tough for so many of us. Hugs and smiles Queens and Kings!
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Deb, Many hugs to you. Birthdays continue to be hard for me 13 yrs later. I try to think of the joy we shared but your wound is fresh.Do everything you can for yourself today...the rest can wait
 

Janis J

Active member
Joined
Jan 7, 2016
Messages
53
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
Oregon
City
Portland
Douglas is in the hospital with a bad infection at his stoma, a week after replacing the original PEG tube with a MIC-KEY. Hospitals are hard enough anyway, but horrible when your speech is slow and slurred and people assume you're deaf and/or not all there mentally. It's hard that the nursing staff is already overworked and so much of his care requires time and patience. He's on oxygen there, and I managed to get his recent AVAPS prescription to the nursing staff and respiratory people so he can use equipment they have on hand (he doesn't yet have his AVAPS stuff), but that hasn't happened yet. Every time he wants one of his "as needed" meds a nurse has to ask for an OK from the current doctor and then send for a pill from the pharmacy. His meds to hold off migraines were held up for two hours, by which time he had a very bad migraine in addition to the horrible pain in his abdomen. I spent two days by his side to advocate for him (with him thinking I was there for a "death watch"), and today our wonderful 2-days-per-week professional caregiver is there with him so I get a bit of a break. Meanwhile our daughter and 12-year-old granddaughter have flown across the county for a long-planned fun visit. Our daughter jumped right in cleaning and organizing and is visiting the hospital now.

I hope to go back to cheerful updates next week.

Janis
 

skipper66

Very helpful member
Joined
May 20, 2012
Messages
1,478
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
Hi!
It will be 3 months this Sunday since the passing of my father. I am not doing good at all with the whole thing. Finally, didn't have much choose. It was either be put on medicine or potentially be at risk for losing my job. I cry constantly. So, they are trying the drug Depakote on me and Ativan as needed at bedtime. I have depression naturally so my dad's death just added more to it. I went this past Tuesday to a grief support group to see if it would help. I know dad is in a much better place and is free from his suffering. Believe me when I say I am truly grateful for that. But, the missing of him is just unbearable. I know my dad wouldn't want me mourning like this so I have to figure a way to dig myself out of this fog. It just really hurts.
My sister is driving my dad's wheelchair van from Dallas to here in Illinois to give to our cousin who was diagnosed with ALS just weeks before dad's death. She is in the early stages of it yet. But, as we all know that can change in a heartbeat.
Love to you all, Kim
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,931
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Janis, so sorry to hear about Douglas's infection. Let us know if there is anything we can do. You have the absolute right to bring in and administer any meds you consider necessary. Don't ask permission, just tell the nurse to document the drug, dose and time, and of course avoid duplication. Why is he on oxygen? What is the BiPAP holdup? I would get a patient advocate involved (there should be a number to call listed in the room or ask); this standard of care for a PALS is not acceptable.

Kim, give yourself time. 3 months is not long. Remember the good times. Look at the pictures. Know that is what your dad remembered at the end.

Best,
Laurie
 
Status
Not open for further replies.
Top