Off state


#1

Hello all my brothers and sisters in arms,

I have something I will share with you all for the past year I have been involved with a clinical trial the results off which should be available to me a short time after next months final assessment, for that assessment I have to go into an off state which off course means all hell breaks loose and my symptoms are at their worse.

Parkinson's UK have never filmed someone in an off state and they have asked my permission to do so and I have agreed, this is going to be done only for the website and for the purpose of science.

My symptoms are quite heavy going especially my double edged b**** the Distonia so I will not necessarily be me until i take my meds then 40 minutes or so BB come backs.

My reason for agreeing to this as most of you know I am determined the public in general WILL learn that PD is not just a tremor and is not just an OAP condition and they will also learn just how bad this uninvited guest can be for those of us whom have to deal with this everyday.

You all know me to be straight talking as I often say I know of no other way so in a strange way this is no different be it visual rather than vocal and I do know myself just how ignorant some people are towards those of us with any type of disability. 

I will not ask any of you to make a point of watching the video when produced that is purely your decision i just wanted to warn you it will get quite bad for me but after taking my meds Karen BB will come back and normality can then resume.

Going into an off state does not hurt me it distresses me I will be with a very special lady friend from this forum whom I have not yet actually met but I know she will look after me, so my very heartfelt thanks goes to her and all of you whom will be wishing for me to stay strong through out this period of time.

Just one thing if any one thinks they can talk me out of this be assured my mind is made up and I will not change my mind the public will be informed and if this is required to enable them to do so then so be it.

My good wishes to you all and take care brothers and sisters.

Your friend BB.  

 

 

 


#2

Bless you BB. Together we'll get through this.....I won't let you down. 

What you're doing, is very brave and will help the medical profession learn more about this debilitating condition. I applaud you and look forward to our meeting.

Twinks x


#3

Wow! all i can say is best of luck BB, quite a courageous act.

 


Barnowl

 


#4

Hi BB

I am so full of admiration for you. So far I haven't experienced distonia but it looks like a particularly nasty element of Parkinson's. My best wishes to you and I look forward to seeing your film when it's done.

Regards 

mrtoad.


#5

Much appreciated MrToad and Barnowl, even though we do not know each other your support is so thankfully received.

I have always been a stubborn woman and in a way this uninvited guest make's no difference.

As said they will learn I will not give them a choice, we have had to so why should they get away with it.

 

Best wishes for a nice relaxing couple of days to you both BB xx


#6

Hi BB,

Thank you for being so brave and inspirational.  I know how hard it is to be unmedicated but you are doing it to support research that will hopefully make a difference to all of us. I only wish I was so brave. xx


#7

Good for you, BB. If you're brave enough to do this (I'm sure it will seem like a very long 40 mins) then the least I can do is watch it - probably in awe of you!

Do you have to do this to see how the trial has worked?


#8

A courageous and unselfish thing to do BB.

I'm sure it will help further the cause of bringing home to the public the unimaginable symptoms of this awful "disease".

What, I'm also sure of is that it will show how with tenacity and self will we can fight back.

Good luck,

Jules77.

 


#9

 


Go for it BB.


#10
Yes and no tabby cat, every three months i had to go to London slowely going off so to speak ( makes me sound like a bad smell ). Up until jan this year i was using the trial drug which was a weekly injection that was set for exactly 12 months. So this jan was the last of the drug. Now i am not using it they do the assessment so they can compare results and see how effective my meds are and they can only really see how bad our PD is unmedicated. Mine is at stage 3.5. The purpose of this assessment is to finslise their findings and it was purely by chance that i was at central office telling a couple of staff that i was having this happen when they got the idea for the video. Initally my thought process was i don't want to see me unmedicated so why in earth would i want others to see me at my worse. But then i had a couple of cases where i was out and about and my Distonia kicked in quite bad and the reaction i saw from english speaking joe public when i had to inject myself to correct the problem so angered me i bascially thought b******* they have to get educated. I am getting more and more angry co's they are so ignorant i am determinded as hell they will learn we have had to so why should anyone else get away with it. I can function in a off state but not very well. And as i said in my post if to understand the s*** we go though every day they have to see me off then so be it. I admit i an approaching this with caution i am scared as to how bad the distonia can get because i have never alowed it to kick in without doing my injection within 5 minutes of an attack. I know a lady who says her whole body starts to twist at the moment when mine kicks in it starts in my feet they curl up at toes and my right foot then twists to the right then it goes to my right shoulder and then it goes to my jaw The apo go i use is powerfull but short lasting, and on top if that i take an additional 33 tablets per day, not all parky meds i have hypertension as well and vertigo and have other pills to counteract the side effects i get. Sorry long winded reply but to difficult to explain in a short version. I will let you all know when it has be produced so if you choose to watch it it will be with my blessing. Take care BB and that you all for your support.

#11

Blimey, BB, 33 tablets?

I suspect the reaction you got from Joe Public was borne out of fear - which of course is fuelled by ignorance but not surprising. The self-injection probably didn't help!

I think what you're doing is great. The more people know about PD (which, after all, isn't a rare disease), the more pressure there'll be to find a cure, or at least a decent treatment.

 


#12

Barnowl you are a beautiful woman xx


#13

JUJU you are a beautiful woman xx


#14

 

OMG BB! didn't realise you actually took 33 tablets, plus the pen to keep you going. You are being brave going  without your meds in the name of research, and I really wish you well and you come out the other side unscathed. You will certainly have the backing and enormous gratitude of all those who have this damn PD. Three Cheers!!!

Best Wishes - Sheila x


#15

Wow BB you are one amazing lady. What courage you have! All I can say from the heart is a big "Thank You" for doing what you doing. As you say people need to know what having Parkinson means....it's not just a tremor it's so much more! Hopefully what you're doing will help so many of us. 

Thank you again.

Su. xx

 


#16
Thankyou ladies i feel really i have no choice as the medical professionals can only learn with our help and untill they find a cure they cannot say they know how to treat us 100% effective. When i was still working I signed up for the clinical trial on telling my manager she said why would you want to do a thing like that Karen my reply was Sam do you think i want to be stuck with this s*** for the rest of my life I was 48 then, her dad actually has this so you would think there would be more understanding. If I was in my 80's then I would not bother but I am 50 that is a lot of potential years to detoriate that's what I cannot bear the thought of. So that is what inspires me to fight all the way. So with the fantastic support of all of you on here I will stare this B**** of a condition in her ugly face and quite frankly tell her to F××× off and die b**** because we have too. Much love to you all BB XX

#17

As I read about what you are going to do BB, Meat Loaf's song came into my head

"I'll do anything for PD...... but I can't do that!"     (sorry Meat Loaf I had to change the words!)

I can retell my experiences of supporting my Mum,and learn more about PD, be a healthy control in research projects, review research grants and support those with PD by being the lay member of  Panels to keep the voice of those with PD uppermost in the professionals minds as they do their work.

BUT I can't do what you are doing - you are taking an amazing step to further research in such a big way.

I read with utmost respect about your involvement in a research project and now your gift of a very personal contribution to research. The video once made will be an amazing way to support understanding of PD. A picture tells a thousand words but a video will create something that anyone who watches will not be able to miss the message and so will increase understanding.

Your contribution will be an asset to research.


#18
Thankyou Keld I really do appreciate your support. I have the upmost support for everyone who does what we do by being members of this forum. Regards BB x

#19

Good work, BB!

Some interesting news about a new drug to prolong the on state and reduce side effects of levadopa...

GG

http://parkinsonsnewstoday.com/2016/03/02/zambon-launches-xadago-safinamide-in-italy-for-patients-with-mid-to-late-stage-parkinsons-disease/


#20

Thanks for that GG I have looked at the info and it defo looks quite interesting.

Kind Regards BB.