48 Hours into ALS Diagnosis

Nanders

Member
Joined
Nov 14, 2019
Messages
19
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
Hello I'm Nancy..
Just diagnosed with psuedo-bulbar ALS 2 days ago. I'm 55 yo with 3 adult children & 2 grandsons. My youngest who is 26 and a paramedic is in total denial.He won't talk to me.
My 2 older children ( oldest is 32-dtr & 30-son ) are dealing fairly well. Wanting to know everything and go to my appts. I've been ill with autoimmune issues my whole life, but always been able to have an active full life, so I think it's hard for them to accept mom suddenly becoming unable to function...and it's not going to get better this time.
I've been steadily declining for 2 months now and have had symptoms for 2-3 yrs that were being overlooked as something related to my Rheumatoid arthritis. So I've had this apparently for a couple of years or so...
I look forward to hearing about everyones experiences & sharing our highs and lows together.
Thank you all for taking time to listen!
N
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,981
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
very sorry to welcome you here Nancy, but you will find that we totally get it. I hope that with a little time to digest this you youngest son will deal with it and get on board. I hope this for both of you.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
122
Reason
CALS
Diagnosis
1/2015
Country
US
State
Texas
Sorry to hear about your diagnosis. You will find this is a great place for support and Information. Our son was also in denial at first but has turned out to be a great help to us. It takes time for the children to accept.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,932
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Sadly, welcome. Look forward to getting to know you
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,829
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
Hi Nancy. Sorry to have to welcome you, but welcome. This is a great place for information and support. Lots of great folks here who get it. Feel free to share more about your story. Looking forward to getting to know you better.
 

nona

Forum Supporter
Distinguished member
Joined
Oct 1, 2018
Messages
202
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
Welcome, Nancy, and thank you for sharing with us. We will be here for you as you face the frustrations of this disease. Thinking of you.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
951
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
Welcome to the worst club out there. But if you have to be here it is a good place to be. Lots of tips, tricks,how to's and a good place to vent. You are among friends.
VIncent
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,821
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Hi, Nancy, it can be hard for everyone to accept the idea of more burdens on top of your existing heap. Your family members will each find their own way to do it. Let us know how we can help you.

Best,
Laurie
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,519
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Hi Nancy,
I'm so sorry you are here but we are here for you, during good times and bad. Remember that ALS is terminal but a diagnosis doesn't mean your life is over. Your son will come around. He needs time to process. I'm glad you have family.
Feel free to post anything. We are a good group. I was here all during my diagnostic process time so I've been here about five years!
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
242
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Nancy, so sorry about your diagnosis. Like you, I am 55 with two adult children. Our youngest moved back home while finishing his last two years of college to be of help to both me and my husband. He struggled with both the diagnosis and acceptance at first. Time will help.
You are in a good place to learn, communicate, and find community.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
661
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
Sorry for your diagnosis but welcome to the forums, it's a great little community.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,124
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
I am very sorry to have to welcome you here, but welcome nonetheless.

Steve
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,523
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
North Carolina
Hi Nancy. You found a wonderful group to share this with. Welcome to the group nobody wants to have to join.
Becky
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,568
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
Hey Nancy.... it's been a few days since you checked in. Hoping you will share your experience to
diagnosis with us. There are very knowledgeable members here that can help concerning clinics.
Will you be going to clinic? Hope all is well. You'll find a lot of good support here.
 

Nanders

Member
Joined
Nov 14, 2019
Messages
19
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
Hello,
Thank you to everyone for the warm welcome and support ..
It's been a bit overwhelming as everything has gotten going so fast while trying to deal with me kids emotions.
My youngest son is still not talking to me..although I got a text from him with a picture from his hotel in Dallas ( he's at a trauma conference there ) and he saw Jane Seymour was staying at the same hotel!! LoL At least he reached out.!
I have an appt with my social worker Wednesday to get the ball rolling on all equipment orders, started OT/PT today and I've started baclofen and Riluzole a few days ago.
I get so fatigued so quickly, and my voice gives up in short time...it's frustrating. But the unexpected laughter sure helps 😂!
I count each day a gift and I will open them gratefully..some will be socks ( that I'll need help getting on, lol )
and some will be chocolates 😋
I feel very blessed to have all of my new friends and want to be here for you as well
Nancy
 
Top