Recent content by BlueTrain

I tested it the other night - still working fine. :)

I decided to write this message as I understand that my first post in the DIHALS section has caused some concern among some of our undiagnosed members. The purpose of this post is to clarify a few things and to explain why you should not compare your situations with mine. To begin with, at no...

Oops - I just noticed your question, Becky. Sorry about that! I am lucky as my Mom and Dad are close by, so they could cover for my wife if necessary. Although I could probably survive a few days on my own (now that I have a Life Alert - embarrassing, but necessary!)

I agree with Pete - please don't feel guilty for feeling happy. I would gladly sit on the couch for a few days if I knew my wife was doing something she enjoyed. Unfortunately, she's been sucked into this nightmare and is becoming more and more reclusive. I'd love for her to get away, to take a...

Hi Melissa - very sorry to welcome you here. I am young, too, but am likely SALS (although I haven't undergone genetic testing). I pray that your progression is slow. Thomas

Leo - welcome, and sorry to hear of your diagnosis. Thomas

Sorry you're here but welcome. You'll find this Forum to be incredibly supportive. Thomas

Ken - sorry to welcome you here. This disease sucks. I m taking Riluzole/Rilutek but I'm not sure how much it's helping. Personally, I haven't had any side effects, so I'll continue taking it. I'd say give it a shot to see how well you tolerate it, and remember to get your liver function enzymes...

I'm lazy so I just mix it with lukewarm water and chug it. It actually doesn't taste that bad. But azgirl's recipe sounds delicious!

Becky - I hope the improvements/stabilization continue/s! I started about a week and a half ago and will also keep everyone up to date on any noticeable changes.

This is very well done. Every ALS Clinic and primary care provider should have a copy. Thank you Kim and Tillie.

Hi Vincent - you should be good as I just started the study. In fact, the blood sample and skin biopsy can be collected by your GP (or a local nurse) and sent to ALSTDI in Cambridge. (although as Nikki pointed out, maybe they do not require these samples for PM 2.0.)

A massage chair? And this was brought up at an ALS support group meeting? The last thing you need is to feel guilty about what is happening to you. Even if there was some factual basis for the comment (which there isn’t), I still don’t understand this individual’s thought process. Let’s say you...

Hi Wendy - sorry to hear about your diagnosis. I'm relatively new to this, too. As you probably already know, the members here are great. You're in the right place. Thomas

Hi Paul, I also have a prescription for medical cannabis and you’re right, it is very expensive (especially the oils). I am on the South Shore of N.S. and my local MP has agreed to meet with me to discuss the state of Canadian ALS research, accelerated approval, special access, etc...