yeah casie, totally different to mine i was in hospital for three days ,and they told me the outcome on last day ! waiting list 3 to 6 months ,but there was a cancellation so i took that.hope it goes well for you casie
https://www.facebook.com/parkinsonsuk/videos/10154260207923856/
Hi as promised this is the link to the first part of the film PUK have published.
It shows me after I have had the worst distonia attack ever I am on in this footage but can see in my face I have had the stuffing knocked out of me.
The other parts of the film they are holding back till when I do not know but I think it is for something bigger.
BB x
Sorry bb
I don't want to sound cruel but you seemed to be very good with you hand tapping also your walking was very good almost like you having nothing wrong. I know i am going to get some nasty feedback of the forum but you've allways said don't hold back what your thinking. Sorry maybe im getting something wrong. Sorry again
Aye bb and gus
aye you went better than I could at walking but a two minute slot doesn't show the whole picture ( must say Bb you looked very posh ) looking forward to your next film take care lassie
ian xx
Thank you for putting that on BB. I applied to one of the researchers but due to my shoulder being titanium it would have caused problems which was a pity. Now I can't because of other health issues but perhaps some time in the future. LIke you say, we want to be able to help beat this awful disease!
you take care,
sue xx
To make it clear when my Meds are working since being on entacapone they are working brilliantly. That part of the film was taken about 1.5 hrs after they had kicked in since being on the entacapone the stick has not been so essential. I can assure you I do have PD otherwise they would not have accepted me on the trial. It is the distonia that gives me the most grief now don'the know why it just is. And as for posh I am an ex council estate girl who has a thing about her appearance I have a standard I stick to and I will not budge from that standard. Hope this clarifys things for you guys and Ian.
BB.
I was with BB at the time this video was taken at the hospital and can honestly say that before the meds. kicked in, she was in a bad way with the dystonia. It was painful to watched her body twist and contort. But as she says, once she has taken her 39 pills a day, she appears 'normal' and feels OK. The thought of the next dystonia attack rules her life though and if DBS is the answer, I sincerely hope she gets it done.
I had never met BB before going to London with her and yes she is a glamorous lady who takes great pride in her appearance. She is also a very strong, friendly, chatty person, with many a tale to tell. It was a difficult time for her doing the trials, but we did managed a laugh and a few Jack Daniels and Coke, which she carries in her luggage!!
I wish her good luck and good fortune......she deserves it.
Twinks. xx
Aye aye bb (hello )
I posted exactly what I saw in your film and I can't walk. as good as that on my med at any time , now let's be clear on what I Posted at no time did I post you were some sort of liar ! And if my wife puts on nice clothes I pay her a compliment by saying o yes you look very posh ! ( nice - neat - attractive - your cloths are smart ect ect ) am Scottish for f...k sake
Ian
I have not said anyone has said I am a liar but if anyone feels the need to question my having PD with Distonia then look back at post 73 the letter from my neuro surgeon to my GP. I will if I feel necessary have this post completly removed I did not agree to share this with you all to then be given grief. It was agreed on as some need to learn what happens with us with this condition.
BB.
Hi bb
Lets put things straight i think everyone has good on time this should have been said on video that your meds have just kicked in as for parkinsons i myself can walk just as good as you in video i am on 4 125mg 3 62.5mg sinemet 1 azilect 5 entacphone all the rest for pain added up 43 aday deep brain stimulation. I think people myself included was you were going to be in your Off state .it was bit of a shock to see you in On state.this should have been explained. This is why people with pd have to be in a Off state when claiming pip and other benefits. And as for posh i think ian meant you scrub up well. I myself know what's distonia feel like and it's not nice but people can not see you body twisting in side and leaving you so tired but it does not give you time for next round in the ring.I'm sorry if i upset you at all ps I'm from a council estate aswell and have a bit of bling.Lets not all get out of control we all got to stick together. Love gus
I have just thought the title of this conversation should have not been started with. Off state. Maybe this will make sense x
Hello BB
Was good to see this vid at last. Although I have no desire to see you suffering, in away I am looking forward to next vid.
Yes, your walking was fantastic, I wish mine was as good and that my meds worked as well. But, I can understand that you had suffered with the distonia not long before, as I thought you looked quite drained in the interview. You are a brave strong lady.
What meds do you take with your entacapone that gets you walking so well?
Best wishes for the DBS.
S
Hi BB - if it's any consolation, my friend who went for an assessment for DBS, was as alert as you were and was also able to walk as well as you were, but her biggest problem, like you was the dystonia, she got through the assessment with flying colours and has had her DBS done. It was done approx, two months ago it's still early days I know, but she is doing really well.
So don't give up BB, you have a lot of well wishers rooting for you so keep your head up high.
Best wishes Sheila xx
Well said
Hi bb
Watchd the little video. Felt for you, it looked as if all the talking exhausted you.
Agree it is really important to look your best,I feel with a bit a lipstick and a bit of nail polish I can look at myself in the mirror and say yes I'm still me.
Also think people need to understand the fluctuations, how just because we can do something for a little while and then it all goes to pot and leaves us completely unable to do the same for a while. I have a few friends who just cannot get their heads around that.
Hope you qualify for the dbs I don't get distonia. I get horrible cramps in my feet and legs and their bad enough. I know that's nothing to what you go through.
Porthos
Hello All,
Fair enough I should have said the clip was on did not think about that.
The distonia is my most vile and hated and visual symptom I get grief with that every day. I refused the Apo-Go pump point blank (I will not comprises my appearance because of the b**** of a condition ) I use Apo-Go pen for that.
I felt like I gone 10 rounds with Mike Tyson with him landing a punch.
Hi Supa,
I take 10 x Madapar 62.5 MG
1 x Ropinirole 4 and 2 mg to make 6mg slow release
3 x Trihexyphenidyl 2mg
Madapar is taken in 5 slots with a 200mg entacapone for each dosage.
BB xx
Hi BB - what's going on here? I go away for a couple of weeks and find all this nonsense being written - how can anyone that is a member of this Forum have any doubts about ANYTHING anyone tells us?
i completely recognise what you are showing and your explanation of how you are feeling. You have practically the same symptoms as me and I know how b.....y much it hurts. I wouldn't dream of going out of the house without my make up on, my hair tidy and my shoes clean!
I haven't heard anything yet but.hope to be in touch soon.
Love
Casie xx
Hi bb
Going to get my first lot of new tablets safinamide just been approved here they are a bit like entacphone but you only take one tablet aday also they are meant to stop dyskinesa. So i will let you know how i get on. Gus
Hi bb
I haven't seen your video but I fully understand how you feel about people's failure to comprehend the vast difference between on and off states. Many of my friends and family have no appreciation of how bad things can get because they only see you fully medicated and at your best.
When on I can walk quite well and for some distance. There's diskynesia to cope with but no tremor, my speech is clearer and my handwriting almost legible! However on some days I may only get 15-30 minutes of this in each 4 hour period between doses of Sinemet. On a good day I may get longer, maybe 1.5-2hours.
During off times I can not walk, have difficulty standing, sever tremor on my right hand side and a weak and mumbling voice. Only my nearest and dearest ever see me like this, to the rest of the world I my PD doesn't seem so bad at all but you and I know the reality of this condition.
Much love mr toad.