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MommyLondon - This is for you.

PostPosted: December 5th, 2012, 10:08 pm
by jpbw
March 1, 2012 - Started twitching

March 28, 2012 - The first day I logged into the bfs chat room, about 10 mins after logging in, someone promised me that she would make sure I was alright until the day I got cleared by a neurologist.

Everyday for 8 months this person spent hours in a chat room, that she ran for almost 2 years at her expense, spoke to me on the phone for hours, again at her expense and sometimes put me before her own family when I was at my worst, there were periods where if someone had off strung a rope up and tied a noose, I would happily have tied it round my neck and jumped, she knew when these days were, without me even telling her. 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.

that person was leanne, mommylondon to most here.

To the members of the chat room, and some here, will know I had a falling out with her, and posted that people should stay away from the chat room, and that it was a cult. this was my immaturity and selfishness, while no one will ever claim to be able to diagnose you in the chat room, you will get comfort, good information, reassurance that the symptoms you have are common and most of all, someone that cares. Leanne has a passion for helping people, and a 'bed side manner' that no neurologist will ever give. In reality, I couldn't have made it through without Leanne and an honourable mention to Jet, Misty, and Greg, Carmen, Cat and Fran. And despite my recent bad mouthing, after having a conversation with her, I realise that the only motivation she has to help people, is to make sure that they are not without support, like she was in the beginning. I didn't just bite the hand the fed me, amputated it at the elbow. I'm sorry.

I also apologise for bashing this forum in general. People need it, this came as a revelation to me after being reminded of a tragic event. If people need reassurance, or a starting point, please reach out to someone, anyone wither here or in the chat. BFS and the corresponding ALS worry is not worth your time and anxiety. It cost me 2 jobs. I couldnt function, I have heard it cost another their life. It doesnt have to be this way.


take advantage of the chat room, you wont need to wait for a response, or to be approved for the board. Leanne / Jet/ Misty are in there pretty much 20 hours a day. someone will be willing to talk to you, and help with any fears.

http://www.chatzy.com/Twitches-R-Us

(Nov 9, 2012 - I was cleared by a neruologist)

This is just my way of showing my appreciation for someone that helped me more than i can repay, and to serve by way of an apology for hurting her over the last few weeks.

thank you leanne.

J.

Re: MommyLondon - This is for you.

PostPosted: December 6th, 2012, 8:22 am
by mommylondon
:D Thank you Jon :D

Re: MommyLondon - This is for you.

PostPosted: December 6th, 2012, 11:27 am
by 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

Re: MommyLondon - This is for you.

PostPosted: December 6th, 2012, 5:48 pm
by acct
I spent many hours in the chat room. I certainly appreciate all of the support i got there. Thank you.

Timm

Re: MommyLondon - This is for you.

PostPosted: December 6th, 2012, 6:56 pm
by 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. :wink:

Cheers,
Bill

Re: MommyLondon - This is for you.

PostPosted: December 6th, 2012, 7:16 pm
by BFSBurger
Yes we all love Mommylondon!!! :D :D

Re: MommyLondon - This is for you.

PostPosted: December 7th, 2012, 9:04 am
by mommylondon
Thank you guys :D

Mitra I miss our talks..lets catch up soon :D

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


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

Re: MommyLondon - This is for you.

PostPosted: December 7th, 2012, 9:41 pm
by 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.

Re: MommyLondon - This is for you.

PostPosted: December 7th, 2012, 11:58 pm
by mommylondon
Awwhh..Greg...that was so incredibly thoughtful to post..thank you...Love my Greggers :)

Re: MommyLondon - This is for you.

PostPosted: December 9th, 2012, 1:54 am
by 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

Re: MommyLondon - This is for you.

PostPosted: December 9th, 2012, 10:12 am
by 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? :lol:

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. :D

Re: MommyLondon - This is for you.

PostPosted: December 9th, 2012, 5:06 pm
by raindog
Now i know why Leanne got the name mommy...She's everyone's mom :lol: But yeah , she's some caring lady. :wink:

Re: MommyLondon - This is for you.

PostPosted: December 9th, 2012, 5:55 pm
by Shanny63
and yes we did have some fab times on the chat site....lol....i think the boys couldnt handle all our girl power.... 8) ..

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

Re: MommyLondon - This is for you.

PostPosted: December 9th, 2012, 6:22 pm
by mommylondon
Hey RD...thank u..and we miss u on chat...stop by sometime :D

Re: MommyLondon - This is for you.

PostPosted: December 10th, 2012, 12:12 pm
by 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.