Answer to Pauliguy and marioneill's questions- moved to own post

[Pauliguy]

This touches home for me. When will I want to call it quits, spare love ones, etc. Steven Hawkins had a meaningful life in a wheelchair, but that is not quite me. For me it is when I can no longer perform living in a way that defines me. I wonder if there is a forum on this?

 

[marioneill]

Pauliguy - I'd love to know about that forum too if it exists. I've just been diagnosed for 3 1/2 weeks, bulbar onset, and am really struggling with a lot of these end of life issues.

 

[marioneill]

Nicki J, you mention other forums where this issue is discussed - would you please post a link to it/them? Thanks.

 

[affected]

@marioneill use the search function at the top of the forum and you will find lots of really helpful discussions on many aspects of end of life issues. The search function in this version of the forum is really terrific and you can even bookmark threads to back to later.
But please, you are only just diagnosed, so maybe look through the sticky posts regarding anticipatory planning and coping with a new diagnosis first. There are many things you can do to improve your quality of life by acting early to have great supports in place.
We will help on all fronts.

 

[marioneill]

Tillie - thank you, I will do what you suggest and look through info about planning and coping with the diagnosis. I'm very scared b/c I was misdiagnosed for a long time and really have no clue about how long I may have. I go to my first actual ALS doctor tomorrow.

 

[ShiftKicker]

Hello-

I have moved this discussion to its own thread, as it diverted from the original post (found here) and it definitely deserves its own thread.

 

[affected]

@marioneill may I ask a question? Who diagnosed you if you haven't yet seen an ALS doctor?

 

[marioneill]

Ah, very good question! It was an ALS doctor, but one who diagnosed me, not who's going to treat me. A neuromuscular neurologist. I had had an EMG in May that was completely normal, and then had an appointment for treatment w/my movement disorder neurologist who suggested this other doctor - all at NYU Langone. He did another EMG & it was positive for anterior horn cell disease. He referred me to Columbia's ALS center.

 

[affected]

thanks @marioneill that is quite unusual.
We strongly recommend a second opinion, and especially with going from normal EMG to diagnosed so fast.
Let us know how you go