48 Hours into ALS Diagnosis

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,986
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
the first couple of months are really overwhelming - taking a day at a time is definitely the best strategy (socks and chocolates was a good way of putting it!)
 

Tedstehr

Distinguished member
Joined
Aug 25, 2017
Messages
186
Reason
PALS
Diagnosis
08/2017
Country
CA
State
BC
So sorry for your diagnosis Nancy. You have many new friends here who will share your triumphs and your setbacks. You could try what I do when I am feeling down; click "Add to cart!" 😄

Let's hope your son is dealing with your diagnosis in his own way but will come to terms shortly.
 

Nanders

Member
Joined
Nov 14, 2019
Messages
21
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
So sorry for your diagnosis Nancy. You have many new friends here who will share your triumphs and your setbacks. You could try what I do when I am feeling down; click "Add to cart!" 😄

Let's hope your son is dealing with your diagnosis in his own way but will come to terms shortly.
Well he can’t be in total denial anymore! He works a mile away from me.. and earlier today I was getting up from sitting on my walker & while turning around to face it/walk with it.. I fell like a tree (...timber!) lol. I’m fine.. little jarred but there’s padding in me & the carpet..
I wiggled first nearly 1/2hr trying to get to pull mysel up & gave up in tears. Called my son & he came to pick me up off the floor & while he didn’t really get that I couldn’t stand or get up unaided... he knows something is definitely changing fast!
I now have a maneuver to not try anymore too!
Everyday a new experience... 😁
Thank you everyone for your love & support.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,528
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Nancy,

Be very careful. Falls sneak up on you when least expected. I fell twice very early on and the second one really affected my quality of life.
I'm glad to see you have a good sense of humor. That takes some of the bite out of this disease.
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,573
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Nancy, it's apparent your Bulbar ALS is progressing body wide. Are you or have you considered
going to clinic? We have members who have access info to ALS Clinics in Arizona that might fit
your needs and support.... if you're not being seen at one.
 

Nanders

Member
Joined
Nov 14, 2019
Messages
21
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
Oh yeah.. I have total body involvement! Right side is weaker than the left, which is hard to get used to since I’m right dominant. I’ve fallen several times in the last few months & by the grace of God have only skinned/bruised my knees/hands!!
I’m having a home assessment by ALSA next week, I go to University Med Center/Neurosciences clinic again next week to meet with my social Worker who is handling everything for me. She’s amazing... contacted ALSA & MDA about me & they’re getting equipment assistance together with her, doing home assessment, & since I’m progressing rather rapidly we’ve started to discuss long term care, POA’s etc. So much to do, discuss & decide 😳
I’ve had my final arrangements decided & paid for for several years since I’ve had autoimmune issues since I was 19yo.
I’m super amazed and grateful at how quickly everyone from Banner UMC has jumped right in and got the ball rolling. Someone calls to check in every day.
I’m blessed...
And if there’s one thing to look at as a positive .. I’ve lost 46 pounds in last 4 months..& keep losing. Sooo I can eat popcorn at 8pm 😂
It’s calling me now!!! LoL
Thanks everyone !!
😍 Nancy
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,889
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Nancy, weight loss speeds progression. So you get to eat all the ice cream you want. 😋😄
 

KenM

Member
Joined
Jun 21, 2019
Messages
26
Reason
PALS
Diagnosis
03/2018
Country
US
State
NC
we're here for you Nancy.
 

nightowl

Member
Joined
Aug 19, 2017
Messages
15
Reason
Loved one DX
Diagnosis
11/2016
Country
US
State
Texas
Im 28, paramedic, son of a PALS. I know it's tough to accept, i know what it feels like. To know exactly what ALS means and not have anything at your disposal to help out. Talk to your family and enjoy the time yall have.
Best wishes.
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
168
Reason
PALS
Diagnosis
04/2018
Country
US
Welcome, Nancy - wish you didn't need to be here.!

It took a month for us to prepare ourselves before we could tell others. Be comforted - It sometimes takes awhile for those who love us.

BEWARE! Not falling is imperative to keeping safe and whole!!! I fell several times like that, too. Plop! Suddenly, unexpectedly, without warning, standing to falling. It's as if one's center of gravity suddenly disappears. A very weird feeling. Luckily, I didn't break anything but my head kept bouncing off hard objects. After the third brain scan I gave up walking. Still standing & transitioning with careful assistance.

Sharing my mantra with hope it may help. We focus on positive things I can do. We anticipate challenging, future things and prepare for them as best we can.. If we cannot, we acknowledge the possibility and use the mantra: . Will I eventually be unable to stand? "Possibly, but not today". "Will we be able to adapt? "Yes, because we are strong we'll find a way."

Socks with rubber grab spots (I call "sticky socks) help on slick floors. Chocolate? Chocolate lifts he spirit. The following will have to do.
May blessings abound B.

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1574711345179.jpeg
 

Nanders

Member
Joined
Nov 14, 2019
Messages
21
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
Thank you so much!
My sister is coming to visit for Christmas for a week from Ca,and is bringing me my favorite See's chocolates 😋
You totally explained the 'falling feeling' perfectly! One minute your standing holding onto your walker and suddenly your down.
This is just kind of hitting me now.. More due to the holidays because I can't do what I've done for years, and the reality of the plans I've had for my grandsons aren't going to be.
It truly is one day at a time.
❤😊
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
168
Reason
PALS
Diagnosis
04/2018
Country
US
Hi, Nancy,🙂

Depending on your door width, these can add extra space (though small - one to two inches) to pass wheeled chairs through, without the cost of widening doors. We had them installed on all inside doors (even ones widened), except linen closet, coat closet and bi-fold doors. They saved us $$$ on several doors. Consider small doorstops to keep handle from bumping wall.


SWING AWAY DOOR HINGES MEASURING INSTALLATION DIRECTIONS- We bought new, matching screws

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FOLDED HINGE
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If not the same size as existing hinges, hole will need enlarging. These are just examples. Good luck 🌈.

May blessings abound. B :cool:
 
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