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So sorry you are going through this. You sound like a lovely person. If I lived closer, I'd come hang out with you.
 
I have found gabapentin helps with my speech. I know your frustration... of being a writer - I feel like the main things I've done for my life is talk, write and eat. I'm losing my hands and speech first. Perhaps I used up my lifetime of words before I am 40 lol - many would tell you its true...
 
Love your humour sleepy!

My Chris used to say he could talk under water with a mouth full of rocks. Bulbar onset proved him wrong. His life as a cafe owner revolved around talking and food and laughing. It was the cruellest onset for taking those things - compared to the athletes who lose their legs first which is cruellest for them.

Keep your humour, you are going to find it will help get you through the darker times, or help you come out of them anyway xxx
 
Hey,

sorry to hear that! I wish you the best.

Are the doctors sure it is ALS? Do you have a second opinion?

You mentioned that you have the Arnold-Chiari-Malformation. As I know it often leads to language - and dysphagia.
 
Hey,

sorry to hear that! I wish you the best.

Are the doctors sure it is ALS? Do you have a second opinion?

You mentioned that you have the Arnold-Chiari-Malformation. As I know it often leads to language - and dysphagia.
Hi MedStudent,
Yes, they ruled out the ACM some time ago. The posterior fossa decompression was successful. I had no dysphagia before or after the surgery in '97. I do, however, have an upcoming second opinion appointment soon. Thank you for your response and good wishes. I send you mine, as well.

- Katy
 
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