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worrieddaughter77

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Joined
Oct 6, 2017
Messages
95
Reason
Loved one DX
Diagnosis
10/2017
Country
US
State
IL
City
Oulu
My dad was diagnosed with "definitely MND, probably ALS" with bulbar onset last week. As I learn more about the disease, I also look back to see if I remember when my dad's first symptoms started. It was 9 months ago that he started slurring some consonants for the first time. But it was about 7 years since he started speaking very slowly. Is this indicative of ALS? Or is there a hope he has PLS?
 
I think I'm just in denial about my dad's diagnosis and looking for a tiniest glimpse of hope. I apologize if the original post sounds silly.
 
I am bulbar and started out with slowed speech. I had a few other symptoms, clonus in my ankles and body wide fasics and cramping.

One thing is for sure with this disease.......none of our symptoms share the same time line, or exacting sequential similarity.:smile:
 

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Worried daughter,

From what I am learning, ALS seems to be series of related diseases that have a common group of symptoms. This was very difficult for my wife to fathom because she wanted a rough picture of how things will progress. But no such reference is available. My respirologist told me of patients who can walk but not breathe, who have feeding tubes but still have mobility and can talk.

We all wish we could give you solid answers, and that we could receive them too.

As a layman; bulbar onset is not good, but his progression seems slow. I think the best is to show your love to him and enjoy the time you have together. Who knows, you could still be having fun together 15 years from now!
 
Great advice, Ted.
 
thank you, Ted, for the insight! It's just i can't stop wondering if what we thought of my dad's personality was instead a manifestation of his illness....

His speech had slowed down considerably over the last couple of decades. His energy levels were extremely low during the last 10 years as well. He admitted he had difficulties swallowing most of his adult life. He could never swallow large pills for example. We thought it was just "his thing". Is this just a coincidence? Or was this a slow progression for what seems to be decades now , which suddenly accelerated last year?

I know there are no concrete answers about ALS though...
 
thank you, Ted, for the insight! It's just i can't stop wondering if what we thought of my dad's personality was instead a manifestation of his illness....

I can relate to that. Most of my adult life I had funny things happen - like one day my handwriting would be okay (not great mind you) and the next day my hand control and my handwriting was bad. Or when it was very cold, my hands would cramp up (spasticity.) It is probably unrelated but strange none-the-less.

So I am the non-answer man again!
 
Thank you for sharing, Ted. I guess we'll never know...
 
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