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noah

duopa pump

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Mihai the night dose is 1.9 continuous and 2 for extra dose. So every night we reduce and then every morning we increase the continuous dose. 

I know it will be better once we get the right dosage. It's already way better.

I guess patience is the name of the game.

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Ranjana, he uses the pump all night? Interesting. 

My am dose is; 3.2, continuous dose is 2.2, extra dose is: 1.0 hourly. 

Mihai, when you were on the pump, what did you take at night if you woke? I take 1/2 C/L, 25/100, if Im awake for too long, then I will take 1 Rytary- 95mg.

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I only wore the pump 16 hours a day.  I turned if off at night and went without the med all night.  In the morning, I would hook it up, and then wait about 45 minutes for the med to kick in and then I was good to go.  The 16 hour thing was clinical trial protocol, so it just stayed the same when the trial ended and it was on the market.  My extra dose was 1.5 every 2 hours.  If you go off before you can get another extra dose, then the continuous dose should be slightly increased or the extra dose raised or taken more often.  It's always a difficult balance to strike...oral meds, pump, DBS settings...it's always a challenge to get the sweet spot where everything is as it should be!!!

Hang in,

Mihai

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Very good description of the Duopa experience, Mihai.  Settings are very individualized. That's something you'll never get with oral carb/levo. My current settings are as follows: AM loading dose 7.0 mL, continuous rate of 1.8 mL, an extra dose of 2.0 mL every two hours with a limit of 5/day. I rarely use more than one extra dose per day.

Dianne

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Ranjana,

Since I was already on the pump (and not on any oral meds) at the time I had DBS, they had to figure out whether the stimulation would be enough, or if I needed any level of C/L with it.  As it turned out, with the stimulation levels that worked for me, any little addition of C/L made me highly dyskinetic.  So they decided to move forward with just the DBS (which I preferred anyhow).  I stopped using the pump the day they turned the stimulation on and have not used it since.  I kept the tube just in case I needed to use the pump for any reason.  I actually have an appointment on 3/29 to have the peg-J tube removed.  That will be a happy day!  It is possible to use the pump and DBS at the same time (kind of uncharted territory), but for me it was not necessary.

Hope that helps!

Mihai

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Dianne,

Are you having any trouble with your tube twisting/kinking, or has it been okay?  That problem seems to be a little more common than I thought!

Mihai

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No, Mihai. I've never had trouble with the tube kinking. I've had two infections around the tube, one requiring hospitalization last year. 

Dianne  

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At the time we had to decide DBS or pump we were told DBS is better at dealing with dyskenisia and pump may resolve freezing issues.

Which it has to a certain extent for my husband. He is having fewer freezing episodes and for shorter length of time.

Ranjana

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I was given the same option a few years ago and because i was having a more difficult time with dyskenisia  i opted for DBS which took care of the dyskenisia

but now i am having more problems with freezing.

so those of you that have had the pump did your freezing improve.

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Hi Noah...

The pump did help somewhat with freezing.  I always had to make sure I was well "on" though...  Neither the pump (nor DBS for that matter) are really suppose to address gait and balance issues (and freezing)...although there is ongoing debate about that in the PD world.  I have some freezing with the DBS, but I try to manage it well through the settings that I can control.  I read a great (part) of a book re: walking and PD.  The title is "The Brain's Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity"...author is Norman Doidge, MD.  Pages 33-100 are a chapter entitled: "A Man Walks Off His Parkensonian Symptoms."  The chapter is about an African man who really focuses mentally and physically on how he walks...he is very conscious of the movements he makes and concentrates very specifically on thinking about walking when he walks (it's much more complex than that, but that is the theory in a nutshell).  I've tried his idea and it does work.  Maybe not all of the time because there are so many variables to be considered.  However, I find that if I focus (like a child learning to walk might have to focus) when I take steps, I have much better results that when I go about it without thinking.  It's well worth the read.  I think there is something valid to it!

Mihai

 

Edited by Mihai
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The thing i hate the most about pd is that you have to think about everything. You have to think about how to talk it needs to be loud and slow.,how to walk.

I dont know how that person can think about where he puts his feet for every step that he takes

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Hi all,

Noah, I have never frozen, so I can't say whether the pump helps or not. Sounds like Mihai and Beau's mom can answer that better than I.

Ranjana, I truly hope your husband difficulties can be figured out soon.

We are all so different...

Thank you all for sharing.

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Well, noah, all I can say to that is:  we have the disease, so we may as well make the best of it because it ain't gonna' get any better...  If thinking more consciously about how I walk, how I talk, and so forth will make things a little easier, I'll do it...  Anything that makes me function more normally and live more successfully!  What's the alternative?  Bitterness, anger, resentment?  Everyone has something to bear.  Frankly, I'll take PD any day over alot of other things that are alot worse than PD...

Keep your chin up and keep moving forward!

Mihai

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Drummergirl...

You hit the nail on the head...we are all different!  The disease process, the symptoms, the side effects, the treatments...all of the variations...that's why this is so complex.  One person's experience often fails to mirror another's...

Mihai

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Much like that man i have to think every movement that i make. Its very exhausting but if i dont do  it i dont move since meds are not working for me. Now i am so used to thinking i marvel at everyone who just walks. 

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I just get so frustrated about having to think about everything that i have to do

My speech is bad so when i have to say something i always have to think about making sure that is loud enough and slow enough

Alot of the times I forget and then my husband gets made 

Then I have to watch my walking because I freeze alot which makes me prone to falling

 

I liked it much better when I didnt have to think about every thing !!!

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noah, I didn't have freezing before using Duopa. In the past year, I've experienced sticky feet when I walk with my walker. It's caused by disease progression, not by Duopa. As for thinking, it's a big part of my tiredness. I have to take time every day to consciously relax my mind through meditation. The app I use most is Meditation Oasis by Mary and Richard Maddux. I've been using it for 10 years and it still works.

Dianne    

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No pump here but i think progression effects.  My best example I can think of is.  No one around, little noise,  no outside movements and you can focus on a task  done.    Same task distraction and just stop dead in your tracks.  Sometimes you just don,t even have a clue what you were doing.  Takes a few seconds to reboot upstairs and start somewhere earlier you were in the process of doing.  Slower and harder less receptors to do the task.  No matter how much dopamine or spark fewer wirer's to turn on the lights.   Sorry Tom Been up all night and should of just been a reader.


 

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i had my first visit with the surgeon and I all so had a visit from the dupoa nurse.  After hearing what the pump offers I am very excited to get it.

I asked the surgeon about the kinking and he said he doesnt see alot of it.

I also asked the duopa nurse and he said that yes kit can be a problem and he thinks that it is because  people are twisting the tube when unhooking it

and putting it back on . Also he said that people pull on it 

I am so excited about the possiblity of being on again 

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Hi Noah, you may not have any problems with the pump's tube. I certainly hope that is the case for you. I'll be looking forward to hearing how it goes for you.

Let me know if i can be of help!!!

My best,

DG

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