Advice please - duodopa pumps


#1

Hi

I'm seeing my consultant next week and I think he is going to suggest trying a duodopa pump. Has anyone had experience of this? What's it like? It feels like a bit of a game changer for me; a step away from just popping pills and it scares me a bit. I live on my own so is the need to refill the medication each morning inconvenient? What about the off period at the end of the day? What complications are there?

Thank you

Jonathan

 


#2

Hi Jonathan

Fedex has written a lot about his experiences and i am sure he will comment.

there are some very positive youtubes

www.youtube.com/watch?v=4RoIbE2DVas

www.youtube.com/watch?v=N7ELvdRkU7M

personally, i think it less dangerous than DBS, just because of the location

good luck

t


#3

and in english

http://www.youtube.com/watch?v=qnZEcIKzCOk

http://www.youtube.com/watch?v=_4xMnSzni7o


#4

Thanks turnip. Very useful videos! I suppose its all about increasing my quality of life, whether its tablets or pumps or needles in my head. Its worth it to live as well as I can possibly be. I need to live for now because I can only hope to influence now

thanks again

dr j


#5

Hi Jonathan,

Fedex has give you some feedback in this thread.

http://www.parkinsons.org.uk/forum/thread/57715

Hope your appointment goes well for you.

 


#6

Hi dr johnny

At last I have found the right posting, with a little help,I am pleased to hear you may be joining the exclusive Duodopa club, if you are offered it take it it is life changing and has made a big difference to my  quality of existence , it will all be explained when you meet your Consultant but dont be put off  by some of the things that lie ahead its very straight forward you do tests first then if all is ok  DD will be yours, some of the tests and parts of the op are a bit uncomfortable but its over quickly and you will find a big change in your mobility  I would recommend you go for it there is fantastic back up and you will soon get the hang of it, understanding the pump is a doddle and you also have a 24hr helpline, I had the op in march and I almost 100% with this device now its a bit trial and error at first until you reach the optimum dose , but stick at it and you will find improvements in every way above all dont be put off stay as calm as you can believe me if I can do it you certainly can, If you wish to contact me by all means do so  I will do anything to help.

                                                   Best wishes   and good luck            Fed


#7
Thank you so much fed! I greatly appreciate your advice and your help. I was told today to try encapotome (I think it was called that) for a month and if there is no improvement I will try duodopa. Let me have a think, it is a bit raw and is still sinking in so I will get back to you with some questions. Thank you fed!!! dr j

#8

Further to my last post you were asking about taking the pump off before bed, this is necessary but is a simple and I have had no trouble removing or  installing the pump, when you remove it the tube has to be flushed this is essential  but again easy to deal with, in fact I  cant think of anything that will be beyond your capability, the DD   Nurse will keep you right at every step and its plainly obvious to anyone who has read your work on this forum you have a sharp brain and you will wing it Johnny. My mobility through the night after the pump removal was not good so I take a 1.25mg capsule of slow release Madopar when I go to bed which for me is usually 12.30 - 1.ooam but no two people are alike and the DD Nurse will keep you right on that also, this system works for me quite well and in the morning when you re install the pump it only takes 10 -15 mins and you are up to speed, its good johnny ,you wont regret itbig grin

                      Remember if you want to contact me about anything do not hesitated to get in touch

                                    Kindest Regards                    Fedcool


#9

dr.johnny, you might find this article about duodopa treatment interesting too: 

www.hindawi.com/journals/pd/2013/362908/ 

You are very lucky if you are offered the treatment.


#10
Hi fed and Kate Thanks for the information! I'm concerned about the pump taking away my spontaneity and limiting my life to a cycle of recharging the pump at 7.30am each day, meaning it's harder to travel anywhere or stop at friends. I don't want to be dependent on others. I fought for my independence all my life so I'm very protective of it. Is it easy to change the cartridge? Fed you mentioned it is sometimes hard to change? What determines that? Could I take a madopar on a morning to visit get me going so I can manage to change it? Frankly I hope to meet a woman to share my life with: I know the odds are against me with having Parkinson's but also having a tube hanging out of my stomach surely makes it more unlikely? Then again what choice do I have? Does it hurt when you catch the tube on so something? Does the tube feel secure? What's the dyskinesia like and the tiredness? Thank you for your help Dr j

#11

dr j

i would have preferred to email this but have no idea how to

you need to weigh the likelihood of romance with uncontrolled pd to that of having a small tube in the abdomen. indeed it could be an advantage, 'no i don't mind showing you my tube somewhere private.' could be a very successful chat up line with med students or the curious. 

seriously, nobody is perfect ... but shaking arms during coitus are definitely a put-off. A little tube is just..interesting. put it another way - if you met an attractive women, would a little tubing put you off? Noooooooooo.

how about if she had severe dyskinesia? hmmmmm

lastly there is always the 'yes I have to pump neurotransmitters directly into my duodenum, but so what, lets talk about your hay-fever' macho approach. 

best of luck

 

T


#12

A very good morning to  you John,  your concerns are relevant and I understand your worries, and I also know that no amount of encouragement from me will ease your acute anxiety regarding the " installation "of this system  for that is exactly what it is , the device is a installation , a machine if you like, when I was offered it in 2011 I simply refused to even consider DD , who me having this Alien hang on to my body with its hideous tentacle feeding Dopameine via the tube into my small, absolutely NO WAY I made my argument that I was managing fine with the Madopar capsules, and the back up Entacapone, which you have been offered, of course I was not managing at all, massive and prolonged shut downs extreme bad temper caused by the frustration of not being able to plan trips or hollidays , Obsessive Compulsive behaviour  some of  which was   hypersexuality, caused by the cocktail of drugs I was taking now this latter side effect we took advantage of for a while, my lovely wife though it was like a second honeymoon, but as time went on I became a pest, only with my wife mind, but that was bad enough, so a major change in my drugs was carried out and things levelled out.  This violent swing from normal to beast was a major deciding factor re DD and after much discussion and worry anguish  and fear the Operation was carried out last March and I am so pleased I went through with it, mind I almost backed out John, I had been in NTGH for a week having tests , checking to make sure I was compatible with DD  I was and the following Monday was DD day  ( a little light humour there)eye rollhowever I completely crumbled on the Sunday, I bottled it as they say and decided not to go ahead, giving no thought at all to how  much work had gone into aquiring DD for DB? DB my initials " well im trying to ease your fears",, I observed the young lady ,my Mentor throughout  making a phone call and this resulted in my Nurse Consultant   A    paying me a visit, now when I tell you that this amazing young lady has kept me on track for more tha 15 yrs you will understand I trust and respect her probably more than anyone I know, she sat down and explained it was the last chance saloon for old fed and that there were no other drugs in the cabinet that would help, she chatted away and I saw the light, the rest is history, and the next day I was fitted with the device DD, At first i was clumsy and shy I hated people asking to see it, but as time went by these feelings went and now 91/2 months later I dont really notice it, I do have to take care obviously , not to catch the tube on obstacles, but you can minimise that happening by using the many different carrying cases and waistcoats available which conceal the pump and tube but also prevent them from being pulled or damaged,. There is a little dicomfort during the tests with a tube up your nose to administer the drug but thats   soon goes, and again during the op but again its no worse than a trip to the dentist and once fitted you will soon attain competence  handling the pump , flushing the tube and removing-refitting at  night and in the morning   ,your DD mentor will not leave you until she is confident in your  level of skill , it would be of great assistance if a member of your family could maintain a presence when you are under instruction , its always handy to have backup,may I ask John, do you have family close by that you can call if you need assistance. I also understand your fears about handling the system if you are shutting down, this can be bothersome but remember you can always in an emergency take your capsules until  someone arrives to help, its all about planning John , yes its a pain in the a,,e and there will be times when you hate it but  dont give up as I said its over 9 months now for me and I am 95% ok with it, it means adjustment John  inconvenience and  yes embarrassment at times but so much help is available which you must take advantage of I am  100% sure of you taking DD and making it your little Alien helper, your opportunity to a better life, having read all your posts with interest, it is obvious you have the capability ,go for it John, if the worst case scenario occurs and its not for you a 15min op will take it all away, but that wont happen Dr John,   It  will work for you    PLAN and MANAGE  John.

                                       All the very best John I wish you well  "courage Mon Ami.


#13

Hello John

 You iidependence will be retained and there is litle discomfort, you will forget ist there through time.

                                                Fed

 

 

 

 

 

 

 


#14

I am sure I am speaking for a lot of women when I say that an interesting man can overcome any physical imperfection! It all depends on the hang-ups the man has about his condition. The only thing that could be a problem is when your expectations of her role in the relationship differ from what she feels she could offer,even  though she reciprocates your feelings and might want to be with you, she might not like to be your full-time nurse. I remember reading  Superman's autobiography, in which he describes the situation after the accident which left him paralysed, when his wife did not join the caring team , deliberately, so as to keep the relationship on a level more in keeping with that of husband and wife (equal partners) than of nurse and patient(dependent)


#15
Hi fed and kate Thank you so much for sharing this with me. I'm starting to be ok with this next step in my treatment. I greatly appreciate your advice! If I have more questions I will ask if that's ok? I hope all is well Dr j

#16

Hello Dr j    If you have any fears or doubts please do not hesitate to contact me,you would do the same for me and the prospect of a stay in Hospital no matter how short is not something anyone looks forward to, all will be explained in careful detail so you know what to expect, but its always the fear of the unknown  that causes anxiety , think of it like this, you will find a better quality of life things you have given up to PD you can take back and you will soon master the DD system, at first you might think its a bit fiddly but it  will be second nature within a week or so, and as  I said you will have massive back up, in the meantime batten down the hatches we are in for a rough few days.

                                       Kindest Regards            Fed


#17

Hi Jonathan

I live in Sweden and I got the diagnos Parkinson 1998. Last 4-5 years I  have got more and more on/off problems.

In april 2013 I tested the Duodopa pump,, it's a new life. Due to the  continuous delivery of the L-dopa I am almost "normal". I change the L-dopa cassett in the morning and start the pump. It takes appr 30 minutes  to get effect. I stop it  around 22.00 in the evening.

I must say that the Duodopa pump has given me a new life.

I do not knew about your cost for the pump for you. It's expensive -  but in Sweden we have a system 

"High cost protection" - You have to pay maximum 2300 sek per year for medicin
​The cost for Duodopa treatment is appr 400 000 sek/year

Regards

Anders Davidsson
Västervik Sweden


#18

Hi, 

I have been using the pump for a few months now, lately I have noticed I finish a full cassette in only 12-13 hours-  is it dangerous? can I get addicted ? 

also I find my self unable to disconnect for more than 4 hours at night (I was instructed to disconnect for 8 hours), is it normal? what can I do to change that ?

I would appreciate any advice or similar experience sharing, my doctors don't have any answers...

Regards, 

Meravco
ISRAEL


#19

Just to add to Dr Jonny's thread..


I also am interested in meeting someone and PD doesn't seem to be a complete turn off, for some probably but not all .  I suspect my shake might get more pronounced up close and personal which worries me a  bit, although if you are relaxed with a partner it should be better.  I had a relationship about 3 years ago when I  was 2 years diagnosed and mr. P didn't give me any problems then.  Perhaps it will be tougher now ?

I think Turnip is right that a tube is prob not as big a deal as all that.  I haven't conducted a poll or anything but I know a georgeous woman who has a colostomy bag and it wouldn't put me off .


GOOD LUCK jonny.

Andy

 

 


#20

I was very pleased to read about your success with the Duodopa pump and delighted to hear how much better quality of life you are experiencing now .  My husband is going into St Georges hospital next weekend for a weeks trial of the drug through the nose and I am praying it is going to improve his off times as they are now becoming unbearable for him and he is getting more and more depressed . This is our last resort with treatment having gone through a year of Apomorphine which has caused so much mental confusion .We are all keeping our fingers crossed for a positive result with the Duodopa .