Recent content by jamorel

Barry, I do not have words. I can say only thank you. Thank you for everything.

I just read your note on trach...you are awesome. Harsh to folks who don't know how dark the woods are and are standing on the edge, but real.

I see Jane at our local society has composed a very useful booklet. This is from the ALS Assoc. state side - http://www.alsa.org/assets/pdfs/brochures/alsa_manual1.pdf ...so is it fair to say that it may be a federal issue where policy may not be timely or flexible to meet the needs of those...

Joy's husband assures me that they would have been covered through insurance and government funding. I will learn more. I do like the idea of a "binder" for everyone with PALS with all of the information needed with tabs so that CALS have a place to refer to as a resource.

Alberta ALS Society has this booklet - seems a lot relies on independent insurance agency coverage. There is another Gov. fund to apply for, but you have to somehow prove you are in the late stages of life with less than 24 months to live. nice. ugh. http://www.alsab.ca/_media/docs/manual.pdf#page86

in previous threads (yes, I did search threads on this) I saw a great idea about putting together a book. This was for CALS to ensure all of the paperwork was in place.

if you have information but do not want to comment on the forum, please email [email protected] appreciate any information or help you might have on this topic.

Damn, really? Frig, I wish the system was more clear cut. Okay...I will dig and dig and get back to you. I am in Canada which will be different from the US, but let me see what I can find on both fronts.

So I want to add links to Hope for Joy that will help people in Canada and the US to gain access to legitimate funds as we know the first issue after the reality of diagnosis sets in is, how the hell am I going to afford all of this. Also travel insurance...it seems to come up often. Do you have...

ALSUntangled.com - Completed Investigations

Thank you...yes, Joy was treated for Lymes. Not good and quite a waste of time as she was told that she would still have ALS regardless. She quit the treatment early as it was too hard on her physically. I am skeptical of everyone in this field. i guess the one thing I have read that made me...

Hello Helen. I have been here for awhile...I lost my best friend July 1st to ALS. Nice to meet you. I am very cautious of all that is out there, having witnessed and stumbled across so much while Joy was going through this. I've learned important lessons, such as not to dampen hope, regardless...

ever heard of Dr. Steenblock? San Diego / Tijuana clinics?

He is looking at Mexico and that is what I kinda thought, Al. I read TedH5's experience and wondering how I might get Darrell on that path rather than Mexico. I have heard of people going to these places and paying a fortune only to feel terrible. I dont want to dash his hopes...but perhaps try...

Hi Blade. I am not a PALS - my best friend died July 1st and I am very committed to helping others with ALS. People here have been pitched many solutions and they are frustrated. Everyone who is diagnosed goes down a similar road only to find it riddled with snake-oil salesmen. Please dont get...