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
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
