Duodopa


#1
I have just read an article on a treatment with Duodopa. It was quite interesting and appeared to have good results. Has anyone out there heard of this treatment being given

#2
yes. It is effective, but very expensive. That's the reason it is not generally available.

#3
Hi Kate
I gathered it was a bit pricey. I cannot understand the companies who spend millions on developing these medications and then make them so expensive that no-one will buy them. Surely to lower the price resulting in more sales and eventually more profits would be a better idea

#4
HELLO
Ireceived a phone call on Friday from my Parkinsons Nurse consultant I could sense she was excited about something and when she told me you have your Duodopa well I just could not generate the same enthusiasm the idea of cutting hole in my abdmenemum( never could spell that) and inserting a pipe to feed a constant steady flow of Levadopa and carbadopa this pipe enters the small intestine and absorbed by passing the stomach, now I feel like the ROCK AND HARDPLACE GUY I want to go fore it but what I have Researched it thoroughly and the prospective op does not fill me with confidence indeed the side effects and complications that have arisen seem worse than the complaint.hoOwever,if it genuinely effective in the initial trials I will have the op and ust see what happens The whole thing wil l mean a Hospital stay of about 10 days isn't nature wondeful IT OFFERS THE HAND OF FRIENDSHIP AND JUST AS it has done for the last
15 years snatches it, away in the meantime I will" ENJOY " WHO ME THE13th EARL
fedexlike:grin::sunglasses::laughing::angry:

PONCRIEF ANDTRAMLAND ALONE WITH 20 STUDENT NUSES" fedexlike
OF PONCRIEF AND EXHAM ALONE WITH 22 LOVELY STUDENT NURSES" "PHWOAR"

#5
Hello Fedexlike,


That is great news, I hope all goes well and your life becomes a little easier.
I do hope that you and your family have a wonderful Christmas and New Year and 2013 is a good year for you all.
kindest regards
vivian

#6
:frowning:
Hello Vivian, thank you for your encouraging words, I find myself in a situation causing me a lot of grief,in short I am afraid, afraid to have the OP
and afraid not to have the OP . I have researched the Duodopa system in depth and
wish I could feel confident in its success its 51% for 49% against at the moment.
Then what about all the people who pushed so hard in order to procure the Duodopa for me,even thinking about rejecting it makes me feel guilty ,I know how
much effort all the fantastic members of the PD team at NTGH have invested , it makes me feel special and ungrateful at the same time , I don't want to let all
these people down, then there are the ifs or buts ,if its yes I could be in for a
world of hurt,or then again it may improve my quality of life 100%,I will of course have to undergo tests before the go ahead is granted so all this tortuous
indecision and guilt may be taken out of my hands,my family are all very supportive and want me to go for it,in fact as I write these words,my children
and Grandchildren and five of my closest friends have had a show of hands,they
all voted yes, unanimous in their belief that I should, if the tests are ok
go for it, and I suppose I have nothing to lose, if I cannot tolerate the system
its simple procedure to remove it, so " DECISION MADE" fed is accepting the
Duodopa option, live on my LOPTIP as I write these words, JOB DONE thankyou everyone "they are all clapping and cheering" Good Eh.:grin:
May I wish you Vivian and all who are part of this Forum HappynewYear
fedexlike

#7
Hi fedexlike
Good for you. Go for it When you have had the procedure Pleas let us on the forum know how it went and how you feel.

Best of luck

Chunky

#8
:grin:
Hello Chunky,oh you will all be informed in the most detailed way each day how the system performs,I shall be keeping a log on this forum,hopefully it will be a success and I will be more informed, and will do everything I can to ease the fears of anyone contemplating Duodopa, I know it will be difficult at first but I
will have to learn how operate the device, so will my wife and No1 carer and also
my Daughter as back up. All depends on the preliminary tests,I have been informed
that will be early in the new year, probably January.:sunglasses:.
I wish all PD victims everywhere and anywhere the Best of Bestness
and Wishes the size of a very large thing that all come true
Don't worry I am not inebriated just being silly, Kindest Regards
fedexlike(fed)

#9
There is very little that I have found to help me decide whether or not I should agree to have Duodopal therapy.

Having been diagnosed with Parks in 1988, and for five years before diagnosis I had it but didn't know, i am now in the advanced stage of PD. I have had 2 brain operations: in 1996 I had a palidotomy and in 2005 I had DBS. Both were beneficial but were not sufficiently effective. For the past 13 months I have been on Aporopthine continuous infusion, but there are times in every day when I have severe off periods.

My speech is totally incoherent, and my balance very poor.

I would appreciate it if someone is able to give a report on the outcome of the procedure.
Thanks

#10
With reference to my posting of yesterday evening (Tuesday 8th January)
there is a typing error which may confuse.

The following should clarify

The continuous infusion substance should read:

Name of medication: Apo-go

Drug name: apomorphine hydrochloride This is a dopamine agonist

Given by subcutaneous infusion

Apo- morphine is a different drug to morphine and is not a narcotic and is specifically used to treat PD

Hope this is clearer than the original

#11
My mother had a stroke and was given a peg feed . Do you know if it is a similar procedure.

It helped keep my mother alive for the following three years . She was 90 When it happened .

#12
manor as soon as I can I will inform you of my progress or not as the case may be
johnny it sounds very similar the system by passes the stomach feeding into the small intestine:question::rolling_eyes:
fedex

#13
Having a peg feed fitted was what kept my mother alive for 3 years after she had a major stroke . She luckily had no problems with it .

Good luck will follow you with great interest

#14
Thankyou Johnnie, I am hoping to take my trusty LOPTAP into Hospital with me
then you can all read second by second updates, unless the worst case scenario
occurs of course, ,,No not that,,I meant the battery going flat, it probably
would be halfinched anyway so the best plan will be if Beloved brings it with
her at visiting, Ill report in ,then it can be taken home again, god I do ramble
on don't I sometimes I bore myself to sleep so what it must do to you lot,sorry
I will rephrase that, my fellow forumers, that looks wrong but sounds good.
Kindest Regards Fed:grin:

#15
keep rambling on FedEx , that,s one of my saying's also lol .

I don' think I was as bad before faced with this dreaded illness . By the way it' not me that suffers from it , but in a way I do .

It's such a complex illness isn't it .

I have made a Parkinson's friend since joining Facebook and she has been told she can have it fitted but is worrying about it . I will wait for your posts and tell her . I have mentioned it might be helpful if she joined this site .

#16
:grin:
Good plan Johnnie ,I would like to tell of my advntres tudy but shut dwn
appoligies to yu sir and all fowrhumrs
fedex:flushed:

#17
Hi all

It is same procedure as PEG for feeding but the tube goes just above the jejunum so it is called PEGJ (jejunostomy)it bypasses the gastric system.
Fed Understand your concerns as private messaged you before, without sounding to trite when Hubbie got funding agreed we felt so privileged as in April 12 he was only the the 102 nd person or there about in the whole of the uk an Ni to have it done .
It has improved his quality of life immensely it is not perfect but itvwas never going to be.
It is not for everyone so understand your reticence but sometimes you have to grab any opportunity with both hands.

Sorry for my waffling.

good luck x

#18
:grin:
Hello bubblex
Thankyou for your concern, and the Information, with me its always fear of the unknown, once I have embarked on the project ,whatever that may be Im ok
and sail along in a much stronger frame of mind, I was going to elaborate on this very thing but we have visitors so must go.
Kindest Regards to all fedex:sunglasses:

#19
:grin:
Hello Bubble x I know this might sound stupid, but I am having feelings of guilt
this Duodopa operation is costing the NHS £33 000, I keep thinking, that's a hell
of a lot of cash to spend on old Fed, this will sound even more stupid than the
last stupid,, I feel like a thief sneaking in and nicking the cash that would get
so many other better things done in Hospitals throughout the UK . how many
operations would it pay for, cancer treatments,plastic surgery ,not to mention
mental health care, of which I have had so much , my friends and family tell me
I have worked hard all my life, paid my taxes and I know they are right but the
guilt just wont lift, god knows what I will feel like after the op am I normal.
Kindest Regards to all, your support is very excellently and
special,with Regard to the inward feelings mentioned previously.
Sorry Sorry, a bit of Silly creeping in there,Im trying to lift this
mood you see, did your Husband have this problem Bubble.
Stay Warm Fedex

#20
Dear fed, please don't feel guilty. If this is something not generally available then your experience will be invaluable, think of it as pioneering the way forward for all of us! Keep up the good work! Best wishes :smile: