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

Trixie80

Distinguished member
Joined
Jun 21, 2014
Messages
103
Reason
PALS
Diagnosis
03/2014
Country
CA
State
BC
City
Abbotsford
quarantine?!? I feel like that is my life. I don't get to go out much anymore... Two weeks should be easy.
is anyone doing anything different because of covid-1? I have asked everyone who enters my house to wash their hands asap. But I can't let my caregivers stay home, I need their help. Just wondering what everyone else is doing, if anything?
stay safe
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,686
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I'm being very careful to make sure only necessary people come here. I ordered food and supplies online and have a stockpile of my meds, supplements, and OTC things I usually take.

Our local grocery store has limited hours but is dedicating an hour when it first opens to elderly and disabled shoppers. I will only go when necessary. Even before this outbreak, I always kept stocked up with hand sanitizer so I use it liberally when I'm outside the condo. I always use it on my purse and steering wheel and I pay for things with a credit card to avoid using cash. I did take out $1,000 in cash just in case it is needed but that is in a safe.

I don't go near other people and probably look crazy but now isn't the time to get careless.

I use the outdoor pool when nobody else is in it or one or two other people whom I know are there.
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
195
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
City
Minneapolis
Trixie. It’s not a huge change for me either. Since March 1 I’ve canceled all outings- 2 doctor appointments and a support group meeting. The biggest change is that I haven’t been able to have any visits from family members. I’m maintaining home health care visits as they are needed. My husband is ordering more rather than going out. Hope everyone stays safe in these trying times.
 

frankb

Senior member
Joined
Jun 8, 2011
Messages
540
Reason
PALS
Diagnosis
10/2010
Country
US
State
Georgia
City
Sandy Springs
just about recovered from my fall down the stairs last fall - - 2 cracked vertebrae and 21 stitches from a glancing blow to my head from my permobil parked at the foot of the stairs. was reaching out for the upstairs railing and my brain said i made it but my muscles failed to comply. down the stairs i went, head first and fortunately on my back. so, so lucky not to have hit the power chair head on. friends, please heed as max said a few years ago: "DO NOT FALL !"
 

mytmouz

Active member
Joined
Aug 17, 2019
Messages
80
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
City
Pelahatchie
Had a good friend come over on his day off and relieved my house so the door wouldn't drag when ipening...
 

Dee Dee 0617

Active member
Joined
Nov 27, 2019
Messages
94
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
I haven't been outdoors since October, except for my three foot landing between my front stoop and the ambulance. The swollen arm thing, it's fine. I am a little smug listening to all these people, "I'm bored, there's nothing to do, blah blah " Should we start a website for shut - ins? With games, Count Your Cobwebs , I Spy With My Little Eye, the same thing that's been right there for six months, let's not forget the ever popular I Can Name That Food, then for the extreme sports lovers How Many Pills Can You Swallow Before You Choke ". Is this what happens? Do you see everything through the green spectacles of jealously. My caregiver on the mid day shift was pushing me up in bed and hit my head on the wooden headboard, she said she was sorry. I really wanted to rub my head, what do you do? I said "no worries I'm ok". I'm not ok. You can come and go as you choose. You have a life. I want my life back. Because this bullshit is starting to take its toll. I keep waking up every morning just to do it over and over with nothing in between. Waiting to not wake up. I told someone I've known for 30 years, she said "you've been on my mind, and I wanted to come and see you, I've just been so busy ". BTW she is retired and fills her calendar herself. I said please don't come to see me, I am no longer on display. I'm becoming hard and resentful. I have a great testimony of the miracles of God, Jesus, and the Holy Spirit in my life. You'd think that would /should be enough to keep me going , to keep me on an even keel, I'm ashamed it's not, not even most of the time lately. Sorry about the diatribe.
 

Nanders

Active member
Joined
Nov 14, 2019
Messages
30
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
City
Chandler
Hello All,
Enjoying social distancing w/ my new roommate Victoria. I’ve moved from rehab to the long term care hall in the facility I came to from the hospital Tri after I fell, again 🤦‍♀️
We’re only 3’ apart...but the place is on lockdown for for the second week.
We both are almostShe has Progressive MS.
With my rapidly progressing ALS we make a great pair! Sharing our good & less than good moments!
I am blessed to be in a place where the people are genuinely kInd & loving caregivers, /food is good
( although Im having trouble swallowing ) and the place is clean/comfortable!
I’m not thinking thinking I’m here for a long run anyway 😂
Love & Peace & Joy
❤ Nancy
 

joanneL

New member
Joined
Mar 14, 2020
Messages
2
Reason
PALS
Diagnosis
11/2019
Country
US
State
SC
City
Myrtle Beach
I guess I'm "fine" in Karen's terms. I've been driving without incident since diagnosis but had a couple of occasions yesterday when I didn't get my foot fully from the gas pedal to the brake so I was engaging both at the same time (briefly). No consequences but it makes me wonder if it's time to stop driving. Otherwise generally slow progression, tho progression is happening in speech, more fatigue, less leg and arm strength, and degradation of fine motor skills --can't see any effects from Radicava one way or another. The 10 inches of snow we got last weekend didn't help--this weekend it's cold rain and wind. Best wishes to all--I'll try to keep the thread going.
 

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
195
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
City
Minneapolis
Joanne- that’s when I quit driving. I started ALS with right foot drop. I hope you have someone who can take over for you.
best wishes- Mary
 

nona

Distinguished member
Joined
Oct 1, 2018
Messages
279
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
Is it Wednesday yet? How can this disease progress so quickly when time is moving so slowly?
 
Top