Being a mild mannered and polite New Zealander who has just signed up to this website, I am amazed at the strong emotions that have been generated by its existence. I am a family doctor who has BFS and whose best friend has advanced ALS. He is a few years younger than me, being 37. I feel sheepish whever I worry about my symptoms because my diagnosis has the word 'benign' in it and his most certainly doesn't. None of us know what is round the corner but the odds are very much that I will be attending his funeral rather than him attending mine, assuming that I do'nt get knocked over by a car on the way home from work in a few moments. Whilst I feel humiliated that an allegedly intelligent 44 year old doctor should not be worried about his symptoms, I don't do it on purpose and I have found this website a Godsend in helping me come to terms with this. I feel sad when I read people saying negative things about it because I do'nt feel that this is justified. Not even the greatest minds in the world truly understand the mind-body interaction and no-one can justifiably claim that their view on the relationship between anxiety and BFS or fasciculations is correct. Although I am a vegetarian and am not a sexist, I can only say that one man's meat is another man's poison, and I therefore assume that those who find formal management of their anxiety helpful will go with this, whilst those who don't wont, much as those who find this website's content objectionable will opt not to use it and those who don't will continue to use it. To those of you out there whose lives are affected by ALS or other progressive neurological disease, or who care for or love someone with such a condition, I wish you every good thought I possibly could. I feel deeply for you. For those of us who lose quality of life through pointlesly worrying ourselves half to death and who may share my embarrassment about this when really the glass should be half full not half empty, then I raise a glass of good Kiwi Sauvignon Blanc to you and wish you well on your quest to peace of mind. Kia ora. Simon
My Mums Health: A Story
- Thread starter onesMJonesy
- Start date
juliettwilight
New member
WOW! Talk about a thread igniting a firestorm of activity! I’ll keep my two cents brief:• I very much disagree with the original post in this string;• I told Stacy I wouldn’t bring information over from the “other” site, so I’m about to break that promise, (but this is not scary info . . . it’s good info!) 
• Finding the “other” site first, I don’t feel at all like I should feel “disgraced” for speaking with PALS. There is actually a portion of that Forum specifically titled: “Do I have ALS - Is This ALS?” Many PALS freely offer information, and some choose not to go to that part of the Forum because it’s for just that – people who are worried and want more information about the condition;• I’m very glad, and certainly not “disgraced” for being over there for quite awhile now. Why? Because some of the PALS have become good cyber-friends of mine; I have a great understanding & knowledge of ALS that I would never have had before, and therefore I am now able to help educate others; and perhaps MOST importantly, because of being “where I had no business” I am now a volunteer with ALS Guardian Angels. NONE of that would have happened if it weren’t for the other Forum and the PALS I have met!• Lastly, ironically enough the head moderator and PALS on the “other” Forum send people over to this site ALL THE TIME to help alleviate their worries! So yes, even folks on other Forums tell people to come and read information here on AboutBFS because even from an outsider’s perspective, it’s very helpful: And It Was / Has Been For Me Too!Tattooed Mom: I was sorry to read your post too, because truth-be-told when I read some of your specific message strings, it helped me a great deal. I’ve only started posting here, but I’ve been reading for a long time and you never knew it, but you helped me a lot!Thanks,Suzannj
• Finding the “other” site first, I don’t feel at all like I should feel “disgraced” for speaking with PALS. There is actually a portion of that Forum specifically titled: “Do I have ALS - Is This ALS?” Many PALS freely offer information, and some choose not to go to that part of the Forum because it’s for just that – people who are worried and want more information about the condition;• I’m very glad, and certainly not “disgraced” for being over there for quite awhile now. Why? Because some of the PALS have become good cyber-friends of mine; I have a great understanding & knowledge of ALS that I would never have had before, and therefore I am now able to help educate others; and perhaps MOST importantly, because of being “where I had no business” I am now a volunteer with ALS Guardian Angels. NONE of that would have happened if it weren’t for the other Forum and the PALS I have met!• Lastly, ironically enough the head moderator and PALS on the “other” Forum send people over to this site ALL THE TIME to help alleviate their worries! So yes, even folks on other Forums tell people to come and read information here on AboutBFS because even from an outsider’s perspective, it’s very helpful: And It Was / Has Been For Me Too!Tattooed Mom: I was sorry to read your post too, because truth-be-told when I read some of your specific message strings, it helped me a great deal. I’ve only started posting here, but I’ve been reading for a long time and you never knew it, but you helped me a lot!Thanks,Suzannj