Links, etc. for my wife to understand ALS?

[pvale]

After getting a "probable ALS" diagnosis Thursday, wife and I haven't sat down and talked this thing out yet. I don't think she's accepted it yet, and doesn't know much about it. I need some links to point her to, so she can get all the information there is out there. I am going to point her to this forum and this thread, so maybe maybe she'll sign on and see this thread herself.

Thank you all in advance;

Perry L. Vale

 

[kylisa]

Google ALS Association

 

[joelc]

Perry, I really hope you can get her to sign on.

But if you can't then this is the best place for you to learn about ALS.

If you use the SEARCH feature you can put in anything you want to learn more about. If that fails then just ask.

There is a wealth of information here you will not find anywhere else.

 

[dldred]

Perry, after my mom was diagnosed I went on the ALSA website and signed up for all of the literature I could get. They sent many booklets (free of charge) that were very very helpful. I will admit that at first it was very difficult, but when I started talking to people here I felt so much better about everything. Please have your wife read some postings one here and ask questions. She will find that she will feel much better after talking to people who are dealing with the same situations. Also for you if there is anything we can do for you just ask.

Dana

 

[DgtofTNfan]

We received a number of pamphlets from the ALS rep and a handbook from the MDA social worker, both in our area. There are lots of ALS association websites. Start gathering information but let her decide how much she wants to know and when. We all process this level of horrific, emotion-laden information differently. Give her time.

I am sorry about your diagnosis. I agree with Dana (the other Dana!) I felt better after reading about personal perspective from PALS and CALS than the doom and gloom that is part of the scientific jargon. If we can help, let us know.
Dana

 

[Al]

Here's a pretty good link for the newly diagnosed.

http://www.focusonals.com/index.htm

AL.

 

[Dana Razo]

This is the other... other Dana!

This is the best place for any questions your wife may have as well as you. My husband was just diagnosed with Bulbar ALS in Feb. Your wife is probably still trying to understand what this all means, I would give her some time and maybe once she joins you on this forum she may open up and ask us some questions! I know I still feel at times as though this is all a bad dream and we'll wake up one morning and everything will be just they way it use to be!
The support and amount of information and encouragement on this website is wonderful. You've come to the right place.
Welcome,
Dana R.

 

[Lorie]

Perry, Is it you that got the Probable Dx?

Lorie

 

[pvale]

Yes, it is me. Last Thursday I went to Barnes-Jewish in St. Louis to the neurosciences clinic. EMG had problems, and a Dr Al Lozi gave me the "probable ALS" diagnosis. However, they pulled 11 vials of blood, and testing for everything under the sun, so something could still point to something else.