Today at work in the interventional radiology department, i had a patient that was a pwp. He was there to have a tube replacement for his duopa pump system. This was new to me, so I am going to discuss it here for those who have also never heard of it .
The duopa system is a wearable external pump that delivers Levadopa Carbidoopa in a continuous stream through a tube that goes into the small intestine. The tube is installed during an endoscopic procedure and comes out through the stomach where it connects to the pump.
My patient was in a very advanced stage of pd. He was unable to control his arms and legs and also had great difficulty speaking, stuttering with every word. He told me that with the duopa system, he feels much better , more calm. He said they tried deep brain stimulation but it didn't work for him.
It was quite an experience meeting this fella. On the one hand, i felt relieved that im hanging in there as well as i am, but on the other hand , when im 20 years into the disease process, will i be as bad as he is? I talked to him about health unlocked and thiamine but he didn't seem very enthusiastic about them. He is unable to use a computer anyway, he said.
But he did very well during his procedure. His tube that fell out got replaced quite easily without any scopes. Just Xray and a bit of luck. And as we were finishing the procedure, i said to the doctor I was assisting, "above anything else in life, I'd rather be lucky!" . The doctor agreed.
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bassofspades
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I had 2 uncles who had PD. Both lived to around 90, 15-20 years past diagnosis. Both treated with C/L and exercise. Both were walking around at the end, and speaking coherently. Both died from complications from pneumonia. Those are not bad outcomes. Think positive.
How long ago was he diagnosed with PD and what is his age?
I guess if you aren't interested in all potential options, the road can possibly be harder than it needs to be, but there are definitely no guarantees when it comes to PD alternatives or medications. It all seems to include plenty of trial and error to see what works best for each individual.
Once his new tube was installed, did you see a visible improvement in his condition or did he appear the same as before the new tube?
Hes 74, diagnosed 20 years. After he was taken back to his room i didnt see him. So i wasn't able to see the difference. The sedation meds helped, versed and fentanyl
I learned that duodopa has bad outcomes during my discussion with my MDS. He did not clarify anything about it and I did not ask. Maybe you just saw a bad outcome?
Maybe we should ask the forum for the experiences that others have with the pump.
Nothing comes without a price to pay. I am in bliss with Rytary and I look and feel amazing and appear normal. Until I open my mouth! I am barely understood.
Hey bass have you seen the man any more? I just wanted to no if helped, my mds talked y about it. Last time I seen him. I don’t think it would work out for me they’ve said if you have had a ulcer it could be some complications. The Rytary keeps my stomach churning. Thanks for the post 🤟
I never see patients in follow-up. I just assist with procedures.
The tube that the drug gets delivered through goes past the stomach into the jejunal portion of the small intestine , so I really don't think it would exacerbate your ulcers. They should probably test and treat for H-Pylori, a common cause of ulcers.
Anyway, if you can type or use text to speech, you're probably not as bad as my guy, so the duopa pump system might not be something that you need to resort to yet, luckily.
I’m like you, Bass, still early-on in my PD Journey and “too young to feel this darn old”. I am constantly surveying the landscape of others with years’ of experience, curious as to how mine will differ. Given what we now know and our tools of empowerment- we should be charting new courses. I am encouraged by our sage partners on HU as we rev up our engines for the long haul!
We try. Sometimes it's hard.. every day there's frustration. We cling to hope. We will probably try anything to feel better. Im glad we have each other here in this forum. It really helps.
Hello all - I send you bliss & strength w/ this disease. My father w/ advanced PD (13yrs) tried the Duopa pump for this last year. It caused sooo many complications - UTIs, it came out multiple times in bowel movements much less he pulled it out himself too as the dementia prompted him to do so AND some facilities won’t admit you and/or know what to do with it. Most recently , he was sent to a skilled nursing home and the manufacturer did not get the cartridges there for 5days so he had to be on backup orals. Disaster.
I will say ... he did have good moments on it but to have this awkward contraption hanging off someone w / a movement disorder AND Lewy body dementia seems preposterous.
I recently made the decision to put him back on 25/100 Sinemet but might go back to Rytary.
I’m not saying it might not work for you - we talked to many who loved it - it just wasn’t the best for my dear dad.
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Out of my experience: Turkesterone -The Natural Steroid. It works!!
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