MommyLondon - This is for you.

[jpbw]

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[mommylondon]

Thank you Jon

[mwagner]

Here here.

Leanne was also there for me in the beginning and helped me so much. Not many people here have the motivation and selflessness to help people like us when we're new and afraid.

So, a big thank you from me as well.

Mitra

[acct]

I spent many hours in the chat room. I certainly appreciate all of the support i got there. Thank you.

Timm

[wjjw]

I couldnt get a neurologist appointment for 8 months, 6 months into my wait, i was at my worst, unselfishly she asked for my neruo's name and number - she called him and demanded i get in sooner. I was put on a cancellation list.

Wow ... but somehow, I'm not surprised. If I were the neurologist, I would've had you on the schedule for the next day

I've been really busy and haven't been on the chat site in ages, but Robynn is the best. Hopefully I can tell her that in person someday over a beer. In this life or the next. Trying hard for this one.

Cheers,
Bill

[BFSBurger]

Yes we all love Mommylondon!!!

[mommylondon]

Thank you guys

Mitra I miss our talks..lets catch up soon

Burger..I really hope you are feeling better...U sound like u just may be


Bill would u hurry up already...we are aging you know lol...my bones are starting to crack over here

[Ghayes420]

Nice post Jon.

Leanne was one of the first people I met on this site. She spent numerous hours with me on the phone trying to educate me and share with me the knowledge she has learned with her experiences. She prepared me well for the journey ahead. One I am still on unfortunately. And one I still struggle with.

The chat room has kept my sanity in dark hours and it makes me feel good that I can talk to others about similar topics, even if they are not usually neurological in nature. Nobody in the chat room that Leanne started has a medical degree. But what we do have is the combined knowedge gained from the the top institutions and specialists in America, Europe, Canada and beyond and we share this information in a way that best helps others who have also been diagnosed with BFS. Again, we do like to keep it light and simple but thats the way that life should be.

The time that Leanne puts in to help others understand this condition is unparralled. She really is selfless and does not like to see others suffer the way that she did. I have met her face to face and can vouch for the fact that this skinny mom from the Midwest has a bigger heart than she can handle sometimes. A problem that most of us will never be able to identify with.

Cheers to Leanne and the numerous others who spend their time selflessly helping others with their struggles.

[mommylondon]

Awwhh..Greg...that was so incredibly thoughtful to post..thank you...Love my Greggers

[Shanny63]

i also wanted to say a big thank u to leanne....when i first got bfs over 21 months ago i was a wreck...i convinced myself i was going to die and no one could persuade me otherwise...leanne was one of the first people to respond to my slightly hysterical and anxiety ridden post...when i look back on some of my past posts i cringe now..i was a real mess..

but leanne was there for me...we talked for hours on the phone, spent hours on chat together having a laugh and helping each other...i couldnt have got thru the first few months without her help and support...

even though im not on here much now, and i dont worry about the dreaded...ALS anymore i still want to say thank u to leanne...i love u my friend...u were my rock and u still are....love your crazy little aussie friend....shanny

[mommylondon]

Awwhh Shanny...*beep* I've missed you and our talks...We had some fun times on the chat room didnt we?? The men may have even been a bit traumatized after an evening spent with us on there huh?

But it sure was fun lol...Still have hopes that we will some day get to meet in person..

Take care my friend and speak soon.

[raindog]

Now i know why Leanne got the name mommy...She's everyone's mom But yeah , she's some caring lady.

[Shanny63]

and yes we did have some fab times on the chat site....lol....i think the boys couldnt handle all our girl power.... ..

and one day i will get to america and visit...i would love that..

[mommylondon]

Hey RD...thank u..and we miss u on chat...stop by sometime

[Seepi27]

As someone who has also said negative things about the chat in recent weeks, I feel that I should also put the record straight. I've made it clear that chat is not for everyone, and in the state of mind I am at present, it is certainly not for me.

But, and it's a BIG BUT: the Chat room can be of immense help, and it was of immense help to me, for at least the first six months of my BFS journey.

More importantly, my criticisms of chat should NOT be construed as criticisms of its founder, Leanne. During the eight months that I was in chat, Leanne was part of my mental and emotional furniture, so to speak. That is, she was ALWAYS there. When I needed information about BFS, when I needed someone to talk to, a shoulder to cry on - literally and metaphorically - she was there, unconditionally. Nothing was, or is, ever too much for her, and I certainly agree with the other posters here when they say that she puts her chat members certainly before herself and often before her own family too. I've lost count of the times that I've interrupted her meals or the time that she was spending with her kids in order to 'freakout' and wait for her to talk me down. I've lost count of the number of times that she's explained the same things to me, over and over again, always with compassion and never with impatience. And I've lost count of the number of nights that I've only been able to sleep after hearing her words of wisdom and encouragement.

Leanne, we may agree to disagree on various things, but I need you to know that I admire you greatly for your dedication in helping those who are new to BFS to understand their condition and not be afraid of it. You have a lot of valuable information, tons of compassion and a heart as big as Indiana itself. I am sorry if my dismissal of chat *as a concept* was misconstrued as an attack on you, because believe me, that was NOT my intention. Like many more here, I have known nothing from you but kindness, compassion and friendship, as well as an invaluable source of information on this condition that frustrates us all so much.

And to those who are new to BFS, I would say that while chat may no longer be appropriate for me, almost a year down the line, for you who are just weeks or months into it, then chat - and, in particular, Leanne herself - may be the Godsend you need.