I wasn't sure where to post my upcoming comments as there are so many threads running about which I'd like to speak, but this seems like the safest place at the moment!
I joined this Forum in 2011, shortly after my husband was diagnosed with ALS. He has since passed. What a great place this was to freely ask and receive (and later offer) help, based on experience and a wide range of knowledge, in addition to what we learned at our local ALS Clinic, which also boasts some leading neurologists and researchers in the field of ALS. I might add that on our first visit to the University of Alberta Clinic, we met with a range of specialists and were told, at the outset, what our options were as far as sustaining not only life (invasive ventilation, PEG, etc.,) but also quality of life (BiPAP, communication technology available, equipment, etc.). We were informed about the various stages of ALS that we might or might not encounter. We were advised to get our legal documents in order - Power of Attorney, Personal Directive, etc. Our Personal Directive was specifically designed for ALS patients and offered various treatment options, with the knowledge that at any time, my husband could change his mind. My husband did not opt for the invasive vent. He did choose to have a PEG as well as use a BiPAP. We respected all the decisions he made. In the end, my husband passed just before he lost the use of the remaining functioning fingers on his right hand. Because my husband had experienced symptoms of ALS for about 2.5 years prior to diagnosis, he did not qualify for any trials being offered at the time.
I continue to check in from time to time and it saddens me to see what's happening here at the moment. I have to say that being a member of these Forums is NOT a right. It is a privilege and a blessing. The moderators work hard both visibly and behind the scenes. Some have ALS themselves and are giving of themselves here, as a service to us, the Forum users, NOT the other way around. Attacks and harsh words were not part of what this "safe" place was about. And yes, we did and still do have threads that were used to "socialize". Some to listen to music, some for prayer, poetry, etc., mostly to "escape" from the devastation this awful disease called ALS causes. Some members have made and remained friends on and offline. Nothing wrong with that.
Although being diagnosed may invoke anger in some, it certainly doesn't warrant venting that anger amongst people who are all struggling in one way or many ways, with the affects of ALS - PALS, CALS, FALS, and those with other forms of MND, all of us. We all should be able to share our opinions and not strongly oppose or attack those whose opinions vary or even those, that just happen to be a part of this community! This is a place for open discussion and voicing ideas. Just as we are free to participate, we are just as free to move on.
Because Elaine's integrity has been attacked, I will offer these words about her: She is one of the most level-headed people I know. She is kind, decent, giving, caring, generous, intelligent, fair and a dear, dear soul. She advocates tirelessly for those with ALS. She is giving so much of herself (I hope not too much, Elaine), to help with the arduous task of being a moderator here. Instead of attacking her and all that she stands for, we should show gratitude and thank her, and the other moderators, for all they do. One definition of moderate is: make or become less extreme, intense, rigorous, or violent. Not a simple task in any aspect of life, let alone these Forums!
Unfortunately, we have all found reason to be here. Let's remember to respect and honour each other. Life is short!
Yasmin
