BB, What a women! So brave.
i
As well as stubborn and determined as hell.
BB X
Good luck to you Bettyblue I really want to see that film your made off tough stuff
Hi bb, I haven't been on here much lately but just read your post and I can only say it's a huge thing you are doing for the Parkinson's research and I so much admire your courage to do this. i too wish you all the best with the filming. Sue X
Hi BB, just read your post, and to be honest you are one brave woman, you have my support & backing 100%. When will the video be released?
We all must make more people aware about Parkinson's Disease, and all its various symptoms.
You take care of yourself BB x
today's the day folks Mike will be at my hotel at 7am by then I should be in full Distonia attack. Not going back out of this no matter how worried I am. Ruth is with me so feel like i am a very special person. I definitely know she's is, not many would do what she's done for me. Going away with someone you have only met the day you travel. I feel I have found a very special friend in her so without the forum we would never have met. And she even discribed me as glamorous Lol. Yea right I always Just say I scrub up well.
Just goes to show having this can also bring postives into our lives . I will post details about what happens and as soon as central office then send me the Link I will add to this post for those whom wish to view. One thing i ask is please forward link to any whom you feel maybe intresed. This is so important I am hoprfull it will be ready for Parkinson's awareness week. I wiil report back later to update you all.
I know i am in good hands. Take care Brothers and sisters in arms. Your friend BB
hope you got my voice mail Hawkeye16. X
Good luck bb you take care and stay safe
Live well Cc
Our grateful thanks to you. It`s encouraging that they`re trying out new things. I asked to be included in any research study, so far have heard nothing. All the very best,
Love,
Frances
BB........ I take my hat off to you ...... & I have lots of them !! Huge respect and I wish you well !! Xxxxxxx
Just read your post and had to say i'm sure you will have a heck of a lot thankful folks behind you on this venture BB, take care and hope you recover well. My blessings for all that you put in to help everyone.
All the best - Sheila xxx
Today has been hell this is defintely the worst attack I have had. But I think it was worth it. It felt like the Alien from the Alien films and he was sinking his teeth into my shoulder whilst draging my head back with it with he's teeth getting deeper and deeper. It was so painful it is beyond word's and there was nothing I could do to stop it. If there was no medication to control it i could not live like that i would love to get hold of the fire gun Ellen Ripley used to burn it. I would want to drag it kicking and screaming from my body and hammer it to the wall with a massive mail and burn it untill such time as all I could see was ashes. I would not wish this on my worst enemy. It made me look like the elephant man with the postition my head was in. No matter how many times i tried to bring my head back up it would just drag it back. I am glad in some way my beloved Mum cannot see me like that as she is no longer with us anymore. I will not let the Alien b**** win I own my body my sole and my mind I will never let her kill me that is my choice as to when i leave this life. Quite frankly Alien b**** you can go to hell on your own and whist you are there you can rot in HELL.
Hi BettyBlue,
I so admire you for going ahead with this, I would not have been able to do it. I hope that because of your sacrifice many PD sufferers like myself never have to experience what you have gone through today. I hope there will be better drugs or dare I hope, something that stops it in its tracks, in the not too distant future.
I ignore my symptoms, try to pretend they don't exist but you face yours head on, challenging it to bring you down, but not letting it take control. I am sure you have days when you worry about the future but you seem so strong and your posts always make me feel that I am not alone.
Your description of your alien put me in mind of the following
"Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom. A man can’t ride you unless your back is bent"- Martin Luther King Jnr.
would just like to say thank you
JuJu
Well done BB, you have come out of this knowing that you have helped others and it shows that we cannot be without those vital meds which we have to rely on and trust to do there work. Thank you once again and we all admire you for the pain you have gone through for research.
Good wishes - Sheila xx
Thankyou ladies i feel so humbled by all of this I am almost lost for word's and me and Twinks are now sat up in bed laughing at the thought of that.
I am in so many ways incredibly lucky I have through this forum so many friends whom I know respect me and yet have never met me in person but I also have had some do a disapearing act shortly after dx that to me now does not matter at all any more. What is important is us, my band of brothers and sisters in arms we will stand beside each other till our last breath emotionally and physically and we will do together what we can to get our reward the cure that we need and will win this war together.
BB xxxxx
Amen to that. Well done BB
Home now fish and chip dinner and my old man to cuddle up to on sofa xx.
BB you are so brave.
all the very best to you...Billy
Thanx mate appreciate your support.
BB x
I, too have just got home from London, after spending a few days with BB.
We have laughed, we have cried, we have been in pain, we have bonded, we have shared, we have been filmed, we have drunk Jack Daniels and Coke in our beds, we have even run down a platform at Kings Cross station, but boy have we talked!!!!! Well, one of us has talked a good deal more than the other, I have to say! What an amazing lady BB is, in every possible, imaginable way. We had not met each other before Wednesday, but her warmth, strength of character and bravery, shone through from the instant I met her. Going "off meds." and being filmed, was a distressing and painful time, but she was determined to let others see the terrible effects this condition can have on our body. She is an inspiration and a figurehead for the Parkinson's movement. I am proud and honoured to have her as my new found friend. I just wish you could all meet her and share her enthusiasm for finding a cure for this crippling disease. A truly unique lady.
Twinks.