Closed-Loop Infusion Pumps Patient Views

My speech improved and dyskinesia which was barely noticeable has gone by I got a few new symptoms from Pump shuffling, I never had. Problem walking now I’m very slow and my anxiety has gone through the roof, I’m hoping the shuffling will go and my walking will return to normal now that I got rid of the pump, my speech wasn’t that bad and so what if I shake a little but shuffling and freezing I can’t cope with and the anxiety is killing me, I thought I’d be almost symptom free with this new pump how wrong was I? I was told it’s not for everyone and to expect a dip after being fitted with the pump, but I never expected the dip to be so severe, don’t let my story put you off everyone is different it may well work for you. There is a lot to learn about changing the cannula syringe, lots of little bits and pieces to connect and the computer to work, my child accompanied me on our first visit, I asked the nurse could I video her showing exactly how to set it up, this was of great help to me you just can’t take it all in on your first visit or second or third, I just videoed her hands and voice explaining the different bits and pieces, I hope this helps I could find no information to help me and when I asked the nurses about others in my country who had pump fitted they would just say everyone is different, I wasn’t asking for names or addresses I just wanted to know how they were managing but could get no information, in my head I thought that doesn’t sound great but I soon found out for myself, I was in and out of the hospital during the four weeks that I had the pump on, my family had a tough time as well so glad it’s behind me now.

Hi! Sorry I haven't updated until now… my first follow-up got delayed by a week, so I had time to try something before going back in.

Basically, it's going pretty well. It started off a bit questionable but I am in my third week and things are settling down. I really do like it - it is very freeing. I don't have to worry about what time I eat or how much protein I have. I can usually get up and walk to the bathroom myself during the night, which I couldn't do before. What off times I do encounter are less intense than on pills.

Challenges are: keeping the tubing safe - I have gotten it caught on things like drawer pulls for example as well as gotten it tangled with other stuff. Also remembering that I am still connected and not trying to walk away. I am terrified I will break the pump somehow. And being patient. :)

Sleeping with it is easier than I had feared, but I am glad I wore the holder that came with it a night or two before starting it for real as it let me get used to it. I don't move a lot at night so I wear it strapped to me but loosely and just set it next to me.

I will be curious to get your perspective.

I'm glad you're doing okay now! ❤️. I had no idea until I read your paragraph here but there was liquid form that used a pump! How long have you been using that and do you find it much better? How often do you have to go in in to have medication reviewed and perhaps adjusted?

ahbleza, do you see an improvement in your condition since you started the pump

Hi there from one of the first users in Sweden. I have had my pump for almost 4 months now. Still haven’t found my optimal dose although I think I’m getting close to it. Became tolerant after some weeks, tried higher dosage with no or opposite effects. Finally I was advised to take the pump off during nighttime, which helped a lot. But it sure has been a bumpy ride.

I have had a Produodopa pump for five months now. I don’t think the pump will be hard to handle for your father. But do be prepared that it may be difficult to find the right dosage. People react differently of course, but I have had a bumpy ride with the pump. For the moment I have developed a tolerance towards the drug, and it does not seem to give effect - I find it difficult to take my usual walk in the forest and I am stiff most part of the day. It is, however, much easier than taking pills orally every two hours like I did before. And some periods it has worked really well on my PD symptoms. Hopefully I will find the right balance soon.

My husband is on the Duodopa Intestinal gel 20ml/mL Carbidopa monohydrate 5 mg/mL pump connected to him during the day for the last 2 and half years. Before that he had to take the medopar tablet every 4-5 hours with up and down moments until the tablet took effect. But now with the pump doing a continuous job, life is much better. If he is exhausted after a walk or a family event then there is the option to press the extra dose button as required up to four times a day. It locks for an hour after you press the button so there is no way of overdosing. I cannot imagine his life without the pump.

The canuler is subcutaneous. So I use a device that injects it into place. I have no off time. I considered the pump you have, however I have problems with uptake of medicine via the intestine. Some sort of inflammation that needs looking at. So, this new option was quite a miracle for me. However, every time I get a local infection, it has happened twice now, it affects me really badly.

I am not sure if others experience the same as me? Like when my blood crp rises, it affects my parkinson symptoms badly. That you can go sailing is amazing, I can cut the grass in intervals, but any other rigorous exercise I am done.

If it was not for the pump I would be more or less wheelchair bound. When I was taking tablets I had to be at a nursing home. I could not turn in bed. So, the lesser of two evils is the pump. Travelling anywhere takes meticulous planning because of all the components. Canulers, produodopa glass vials, syringes, a component to draw up the medicine into the syringe etc.

With all these tubes and the pump I feel like a fictional character. But at least I can move better. It does not help my balance. The rigidity is a lot less now. The shaking too. Honestly, the shaking was so bad in both arms. I would sit on my hands and then my legs would start. So, yes the pump has been a blessing.

Apologies if the terms are wrong. I live in Norway, so I have to translate the names of each component. Anyways, thank you for sharing. 🙏🙏

I've been using Duopa gel infusions fit the past five years. I am using the CADD pump which infuses the gel into my PEG/J tube, placed five years ago. This medicine has been my daily Parkinsons medicine and has literally given me my life back.

I'm not sure why I'd use a medicine that required me to change a canula every other day. Would that be a nasal cannula?

I will look this medicine up, but I'm all in with the PEG/J tube sticking out of my stomach. The CADD pump is a little large, but I carry it in a tactical moll pack on a tactical belt during a norm as l day. Hot days when I'm sailing or beaching it, I carry the pump Ina fanny pack.

Peace

Hello! I have been using the new Produodopa pump for 4 weeks now and we (neurologist, nurces and me) are still trying to find the right/optimal dosage for me. How long did it take for you to find at least some sort of balance? I'm the first person in Finland to try this pump so all 'user experience ' will be highly appreciated!