48 Hours into ALS Diagnosis

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Nanders

Active member
Joined
Nov 14, 2019
Messages
30
Reason
PALS
Diagnosis
11/2019
Country
US
State
AZ
City
Chandler
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
 
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.
 
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.
 
Sadly, welcome. Look forward to getting to know you
 
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.
 
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.
 
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
 
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
 
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!
 
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.
 
Sorry for your diagnosis but welcome to the forums, it's a great little community.
 
I am very sorry to have to welcome you here, but welcome nonetheless.

Steve
 
Hi Nancy. You found a wonderful group to share this with. Welcome to the group nobody wants to have to join.
Becky
 
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.
 
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
 
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