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Carolan

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93
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CALS
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Dallas
Hi, I posted a message the other day without actually introducing myself because I wanted to comment on the topic but didn't have time to go into details about my mom's history.

Just a year ago, she started having problems picking up her feet, and she would trip and fall occasionally. We thought it was stress and exhaustion due to other things, but she kept getting worse and worse. She finally went to see a doctor who ruled out diabetes, B-12 deficiency, etc. (and after 8 blood tests, I was ready to scream every time someone would casually ask, "Are you sure it's not diabetes?"!) He referred her to a neurologist who didn't do much for us, and we then went through my doctor to find a new neurologist. She moved closer to me so that I could help take care of her, but due to my own circumstances, we chose an assisted living facility rather than her moving in with me. At this point, ALS had not even been brought up, and it seemed to be something that could be treated once we could actually pinpoint a diagnosis.

Well, she started using a walker and before long, she was completely wheelchair-bound. Still no diagnosis, in spite of our brilliant neurologist's amazing efforts. When he decided to redo the EMG and nerve conduction test, he noticed fasciculations that had not been present before. He referred us to a phenomenal ALS clinic, and I started reading up as much as I could on these diseases, plus revisiting all the others that I had investigated before. At the ALS clinic, we didn't get a definitive diagnosis because she has never shown any upper motor neuron signs (not even in the early stages of this disease), but it is clearly an anterior horn cell problem. The doctor gave us a diagnosis of progressive muscular atrophy.

I am posting this here, by the way, because my mom hasn't followed the typical progression of PMA, and based on what we learned at the ALS clinic, it's not so much *what* we call the disease as it is *how* we move forward based on what we see. She definitely seems to have a motor neuron disease, but little did we know how quickly it would continue to progress.

She was placed on bi-pap for nighttime respiratory assistance, and that seemed to help for a while. Then she started having problems breathing, and I took her to the emergency room, from where she was transferred to an ICU for overnight observation. During the night she suffered from respiratory failure and was intubated. We opted for the trach, and now she is at an LTAC (long-term acute care facility) for rehabilitation. She is breathing over the vent, so there is a chance that she might be weaned--at least a bit--off the vent. If not, though, we will just deal with what we are given.

This has been a whirlwind of a year, and I never imagined that this all would happen to my mom. Then again, I am sure that everyone reading this (with the exception of those who have the familial version of this disease) can say the same thing. I started reading this forum a while back, but because her disease has presented itself in such an odd way, I hesitated to post anything. I was still questioning the diagnosis, but at the same time, we were at least glad to have a plan of action based on what we had learned about her disease.

At this point, I still can't say for sure that I "buy" the diagnosis. It's just been so quick for PMA, but again, we are really talking about motor neuron disease, rather than just focusing on *which* motor neurons have been affected. Maybe we'll learn something based on what happens in her future. She still has quite a bit of upper body strength, so in spite of the vent, she can do things that she enjoys.

When she leaves the LTAC, we will move into a new place together, and I will be her primary caregiver. I'll hire some assistance, but I am committed to being with her as much as possible. This is a choice, and although a lot of my friends see it as a noble one, I see it as the best way that my mom and I can grow together and learn whatever lessons we are supposed to learn from this experience. I value our time together, and I want to help make her life as rewarding as possible.

Finally, I would like to say how valuable this forum has been over the past few months. There are so many special, courageous people on here, and I admire each and every one of you (both PALS and CALS). With such a rare disease, it's easy to feel isolated and alone, but thanks to you all, I am reminded that none of us is truly alone.
 

CindyM

Moderator emeritus
Joined
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Learn about ALS
Country
US
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New England
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Hi Carolan-I am not sure if It odl you how glad I am you joined us. Your first post had a lot of good points so I may have overlooked the welcome. I am sorry for all your Mom is going through. I hope we will be able to help. cordially, Cindy
 

brooksea

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Sep 27, 2006
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Other
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Carolan,

Very sorry your mother has been diagnosed with a motor neuron disease. Wish you well in your journey.
 
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