Hello everyone,
I work in the policy and campaigns team at Parkinson's UK and we're trying to ensure that duodopa (also known as Levodopa Carbidopa Intestinal Gel (LCIG) continues to be made available to all those who need it. To help us do this, we really need to speak to people who are currently on duodopa. If you, or someone you care for, has been prescribed duodopa and it's made a positive impact on your life, please get in touch and let us know.
You can email me at [email protected] or my colleague Laura on [email protected]
Thanks all, Morgan
I sent you a mail yesterday Morgan re the Duodapa system did you receive it, it has been helping me live a normal, or normalish life for four yrs on 10 04 17, of course its not a cure as we know, but if I was refused the opportunity to partake in the great Ddopa trials I WOULD NOT BE HERE typing this post and I would recommend the sytem to anyone system, to anyone it even makes me smell betta,, nope spell better,, thats it,
Please contact if you wish
FED
AmI I the only person in the forum to have Ddopa its made me think im priviledged which of course I am, so if I am the one dont you want to speak to me I feel hurt left out like I used to feel when dad took me fishing, it used to take me ages to swim bacck to shore, then I heard Mam arguing with him, "no no my sons nivver ganin doon thr pit , that hell hole is not claiming my youngest bairn now listen av gettin him a start on monday doon the asbestos factoty noo thats mee last ward, boy waas I glad,??, so Im hear if you need me
FED
Well I would but I've not been accepted yet. I'm wearing the wrist monitor for a week so the doctors can analyse the results then a bed has to be found, have the medication given through a nose tube and then, finally the implant inserted if I react well to let it.
Can someone at ParkinsonsOrg.uk please help me because the hospital have given two of their CDs to me about Duodopa but they won't play on my DVD player. Is this something that you can help me with please.
many rhanks
Casie
Hi Casie,
Sorry to hear you're having trouble with the CDs, have you tried playing them on your laptop or PC? If that doesn't work, perhaps it's worth getting in touch with the hospital to see what might be the problem with them.
Best wishes,
Min
Moderation Team.
As you can see CASIE the smileys are you and I and today is one of the most important days for pd afflicted folks, yes kind person, its Sods law day, examples true not part of old FEDS over active imagination,, are this Ive had a terrible morning with BLACKHEART hammering me onto my knees, making it impossible to move even 2 boosts of old trusty Ddopa failed , its fine and sunny you see Casie just the sort of warm but not too warm day I can potter on my MBS GT, ,WE have a favourite place in the local dead persons departshire point Seghill church yard, I have played here since I was 7tyrs BPE, (work it out) a clue we could play in total safety I even used to sit in the church at night black dark with my Trusty Loyal German Shep at my side, so where was, oh yes SLD, I can gurantee i willl recover in time for the rain due later this is SLD IN ACTION, Casie three times in the last three weeks I have had all the Euro Millions numbers bar one, in other words 1 instead of 2, 7 instead of six 32 instead of 31 three weeks in a row you should get at least £30 000 for that but no it was a severe case of SLD AND THAT MEANS NOWT so whenever I have a bitttooohluck or a gift of any type I check and check x 1000 as usually SL kicks in and the gift wont work when you get it home or the ticket has the numbers from 6wks back, so my dear kind person whenever a gift or a loan is offered and accepted check to see it is in working condition for as you were the last person to have the aforsaid discs,, you will get the blame my dearest ANTI PARKY WING MAN , tuck in close for its SLD until midnight and be extra ,
ALERT ENGLAND NEEDS LERTS
your buddie FED ps have you seen my COAST to COAST POST
Right based on the last post the shutdown bit which still ocurrs now again and sometimes it wont ????er ofF , no sir this gives BLACKHEART a tottaly undefended brain, you see a substial bit of parky peeps have a faulty niagra, so when old FED keeps topping up with Levadopa Carbidopa, via the CADD Legacy Ddopa pump,, well old niagra simply stays in bed all day (lazy ar?????e) the logic being if hes doing it why should I bother so you see my friend the Dd is exellent but not a cure, so when yo have the wee beeestie attached you must stay ALERT ALERT OF LERTS ARE NEEEDD, take care my friend, oh and dont hesitate to ask me anything at all
WnCO FEDexlike OR FED