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Erika

Distinguished member
Joined
Sep 21, 2016
Messages
175
Reason
CALS
Diagnosis
06/2016
Country
US
State
Arizona
City
Mesa
My mom was diagnosed one year ago today. So much has happened and yet, I remember those days leading up to the day and "the" day like it was yesterday.*

I had already been told it was likely ALS a week prior, but I only told my parents we were being sent to another doctor who knew more about her symptoms. I didn't want to scare them without a second opinion, even when this doctor was 90% sure. I did however tell my siblings. I didn't want to give them such news by myself, so my sister flew in days later.* We told my parents she wanted to be here to help out , since I was was to fly out a few weeks later.

The Sunday before we had a cook out trying to have a fun "normal" weekend before that Wednesday turned life upside-down.
That morning started like any other. Mom wondered what the Dr. Would say, but for the most part was calm and looked forward to finally knowing what her fatigue, drop foot and leg weaknesses were all about. We had breakfast and talked and joked in the waiting area. When we were called in, I remember taking a big breath and my sister looking at me. As we walked in, a patient was on his way out. He was in a wheelchair strapped at the waist, legs and head. I remember my mom wispering, " Oh gosh, I wonder what illness he has. " (she remembers that moment too) At this point her dr. greeted us. We talk and after some tests, one really painful one, and 30 minutes later, we were back in his office. As soon as I met his eyes I knew, and then he nodded as if confirming my thoughts. I'll never forget the pain, sadness and fear in their faces. We cried, and promised her we'd be by her till the end. The rest of the day was just.....weird. We went out to eat, but didn't touch our plates nor talked. At home, dad turned the tv on. Then more silence. And then more tears followed by more of the same. The days tat followed are a blur. We were in shock.

Today we started her on a low dose of morphine drops and will be starting her on anxiety drops tonight, as she becomes winded when she talks and has a hard time finding a comfortable spot in bed. Hope this helps her rest. She can kind of move her left arm and hand, but can still keep in touch with my siblings via whatsapp and fb. Her head is feeling heavier and heavier , but now has a high back tilting chair that helps her rest. She is fed through her PEG, but can still taste food and drink some liquids. Her speech is becoming difficult to understand, but we were just loaned an eye gazing device and she's doing great with it. My sister was on dyalisis for close to 10yrs due to renal failure,* but recently received a kidney, thanks to a kind donor. My brother will soon come to visit with his family too.

So, although this has been the toughest year of my our lives , we've managed to focus on the positives and take this one day a time. Heck some days, we take one hour at a time. One thing is for sure. This forum has been such a source of information and support, and for that I am eternally grateful! Thank you thank you thank you!
-Erika
 
We're still here for help anytime you feel the need. It's a tough journey and you seem to have made the best of it. Good on ya. The one piece of advice I give in situations like this is to be fully where you are and look for the grace of the moment. It can be hard to find sometimes, but it is always there.

Vincent
 
Erika, you sound like your family and mother are handling the disease as best you all can. Your love for your mum shines through.
 
Erika, so wonderful that your mom has such a wonderful loving family! Hard to believe it has been a year. Thinking of you and your sweet family!
 
Thanks. Like so many have said, her medical team is great, but nothing beats the knowledge, suggestions and support from those experiencing this first hand as a PAL or CAL. It's in this forum that I feel understood, even if I don't necesarily post. Reading about your experiences reminds me, we are not alone in this and that renews my strength to keep going. Hope you are all having a good day. :)
-Erika
 
Hugs to you Erika xxx
 
Hugs Erika, you are doing so awesome. In this crazy world of ours, it's hard to find balance sometimes, well most of the time maybe, but you're doing it and it shows. Good going.

Hugs,

Sue
 
Thanks for sharing your story. Diagnosis day is something we never forget - like when people talk of remembering where they were when JFK was shot.
I recently heard a term called "post-traumatic growth" which is a positive psychological change experienced as a result of adversity. May each one of us CALS find our own growth resulting from this experience.
 
Thank you Tillie and Sue. ♡
I completely agree growth is possible thorough adversity Manhattanite! This illness has forced some cans of worms to open, and issues are having to be dealt with. It has lessons on every possible aspect of life. From patience to readjusting budgets, to the many ways towels and pillows can be used. Lessons on humor,choosing your battles, working gadgets, forgiving and pondering one's own death. And about thinking outside the box! Boy do you have to think outside the box...
Thinking of you all and also hoping we'll all fingers growth through all this.
-Erika
 
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