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TeamHope

New member
Joined
Feb 6, 2017
Messages
2
Reason
Loved one DX
Country
US
State
California
City
San Diego
Hello, my name is Amanda, i'm 26 years old and live in sunny San Diego! I'm here because my 72 year old grandma was diagnosed with ALS on January 23rd 2017 and got a second opinion confirming that diagnosis February 10th.

I just wanted to introduce myself to this very special community of brave, insightful & encouraging people. I am truly so full of gratitude for having found this site.

I have lots of questions and am excited to meet people who will know what we are going through. I apologize for not sharing details yet just an introduction.
 
Welcome Amanda! So sorry to hear of your grandma's dx. You have found a great place for support and answers as you have already discovered.
 
Hi Amanda
Welcome to the forum, it's lovely that you are taking time to learn about things so you can help your grandma.

Wendy
 
Welcome aboard Amanda, this is our ship and we hate to see you come aboard, but once aboard you will be loved and cared for, and a valued member of the crew.
Al
 
Welcome Amanda. I am sure this forum will help you with any questions you may have to ask. This forum is full of experienced people who give support, and who provide knowledge when you want and empathy when you need it.
 
Warm welcome to you Amanda, I'm sorry about your grandma's diagnosis xx
 
Welcome Amanda. So sorry to hear about your Grandmother 's dx.
Susan
 
Amanda, You are great for wanting to come here and help your grandma. Welcome.
 
Welcome, Amanda, and thanks for being there for your grandma.

Best,
Laurie
 
Welcome Amanda. There is lots to learn about ALS. This is a great community to ask questions of. Everyone had been very helpful.
 
Sorry you find yourself here Amanda....the people here are WONDERFUL. I've learned as much or more about ALS here than through my own Neurologist. If you have a question or concern just ask here on the forum. There is always someone on here that has "been there...done that" and are more than happy to offer you help.

CarolSue
 
So sorry to welcome you here. Good for you for reaching out on this forum. There is a wealth of information from some pretty amazing people who have been through this journey or are currently on this journey and are kind enough to share whatever they know to help others navigate ALS. Al is right....we are all in the same boat here. There is some comfort in knowing that there are people who know exactly what your going through. Again, so very sorry about your Grandmothers diagnosis.
 
Welcome Amanda. I am so sorry about your Grandmother. Thank you for posting here and the encouraging words for everyone. Your Grandmother is lucky to have you by her side. Any question or concern you have will be supported here. Hugs!
 
Sorry you find yourself here, but welcome to an amazing forum.

Hugs,
Joan
 
Thank you all for the warm welcoming! It's so nice to see such a warm and inviting community of people. My grandmother had her first meeting at the ALS clinic at UCSD yesterday and I went with her. We met with an entire care team and that was really cool.

I thought I should add a little more information to this thread because it is so vague. When I wrote this I was very tired, I had spent a long time researching and scaring myself. Looking things up is very doom & gloom..

I feel like I'm all over the place, hope that's okay. Writing whatever I'm thinking. My Grandma started experiencing balance problems about 5 years ago she would explain what was going on as "I just don't feel right on my feet" One day around 4 years ago she fell for no reason, she made a doctors appointment because she banged herself up a little bit.. I guess that fall was what prompted her to start talking to her doctor and to stop writing off what was going on as just being clumsy.

My Grandma was misdiagnosed a bunch of times during those 4 years.. Her mobility in her legs just got worse until her primary decided to to send her to an orthopedic surgeon. In 2015 my Grandma had a lower back surgery because the doctor believed she had a pinched nerve that was causing these problems. She came out of that surgery far worse off than she was before. A year 2016 later the same doctor felt he needed to go back in and check if any debris was left behind so they opened her up again.. She came out of that surgery and was never able to walk again.

She was sent to a neurologist in Dec of 2017 and was just diagnosed with leg onset ALS. It took a really long time to get diagnosed and my Grandma has lost a lot of use in her arms now, her speech has been affected for some time and is getting worse.. She's starting to get this funny sound sometimes that is new, it sounds really nasally? She's been a tropper through everything but the thought of losing her voice is very scary to her.
 
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