Duopa pump

[Sleeplessparki]

My fellow Parkie's,

I went to my neuro yesterday and he told my about the Duopa pump and how successful it has been. It essentially pumps a steady stream of Sinimet through a feeding tube placed in your stomach and into your small intestine. The drug is pumped during your waking hours allowing you to be in the On period all day. He says I'm a good candidate and would like me to consider trying it. He said it works as well as DBS! But a lot less invasive. I called the company that makes it and will schedule a phone appointment with a mentor who is currently using the device as a Q/A session to find out the finer details of the device and how it works and details of the operation.

Has anyone tried this? Let me know your thoughts. If the neuro is right it looks to be a better option than DBS,

Sleepless in NH

[Sleeplessparki]

Nobody in this group has anything to say about my post?

[Hidden]

I won't do either one

[Sleeplessparki in reply to Hidden]

I agree they both are scary !!!!!

[Beemacs]

I went to the Cleveland Clinic about 4 years ago & the neuro I saw was one that helped invent that if I remember correcly. The only other thing I remember is that he said I wasn't a candidate because my on/off times were so unpredictable (I think!). It was Dr. Hubert (maybe Herbert) Fernandez & we talked to his nurse a lot, Cathy Wilson.

[stolimon]

my neuro just intro'd me to duopa stoma. i talked by phone to a pharma rep and a reimb rep; sounds interesting. im 66 6 yrs since symptoms. i dunno about having the pump attached all the time and i love swimming with my 13 month old granddaughter... but i'm maxing out at c/l 25/250, 8 times a day; tried several other prescriptions one each for about a month without demonstrable success. tried accupunc, relaxing but not did not relieve tremors. tried supplements b12, circumin, mg, D, lithium, chaga ragawanda, atre motrine et al. i tried and quit em all at once and exp no diff . walking my dog keeps me active. cannabis keeps me serene. i tried a friend's prescr lo dose ritalin a few times with enhanced mental clarity but my neuro wont prescribe it for me. yoga poses don't help. i have just learned of a quasi-yoga exaggerated motion exercise regime which sounds doable and worthwhile called lsvt big and medicare is going to pay for 1hr/4day/4 week program w a certified therapist 1 on 1. starts next week the sky is still blue

[AmyLindy in reply to stolimon]

LSVT BIG is great for you; encouraged that INS WILL HELP COVER! Spread the Good News, Everyone! Happy for. You STOLIMON!

[stolimon in reply to AmyLindy]

thanks 4 thoughts. i'll try to keep you happy 4 me.

[Sleeplessparki in reply to stolimon]

Yes I agree the thought of something sticking out of your stomach does does sound appealing.

I'm almost 60 and have been diagnosed since 2010. I take 3 tabs 3x per day of rytary. 200 mg 2x per day of amantadine, 2mg of ropinerole 3x daily, methylphenidate 15mg 2x per day and clonoazpam 2mg at night to help me sleep.

[AmyLindy in reply to Sleeplessparki]

Methylphenidate is a stimulant, @sleepless , is this to keep u up in daylight to force sleep at night ?

[Sleeplessparki in reply to AmyLindy]

True I take15mg in the am and 15mg at around mid day. But I still need help to sleep at nite

[Sleeplessparki in reply to stolimon]

Steve, I'm sorry I wasn't more attentive to your reply to my post on duopa stoma. I have been going crazy dealing with my elderly mother today I haven't been able to get back to many of the replies of have received.

My thoughts on the doupa pump is that I too spoke with a representative and I too think it is interesting option and between The duopa pump or dbs I would try the pump. My understanding of the pump is it sends CL directly to the lower intestine making if more effective. I would be interested in knowing how much more CL you can take. I've decided not to move forward because I'm trying to get into the nilotinib double blind study that is coming up.

If you go with the pump option please let me know how it goes for you.

All the best Mark

[stolimon in reply to Sleeplessparki]

i'm doing 25/100 cl every 90 mins day, 25/250 3 hrs nite. i wake up every 3 hours auto. i decided to bypass the duopa and will be evaluated by swedish hosp in seattle for dbs in feb; that's the earliest i could get in. thx 4 response

[cjsg in reply to stolimon]

Several friend husbands took the lsvt program. You HAVE to keep at it everyday and do all the homework. My hubbies movement disorder doctor tried to get my hubby to do it. He said the voice muscles are like any other muscle and have to be exercised. It didn't work for 3 of the men I know that did the class, and it wore them out. They all have advanced PD. I asked one of the wives what she though and she said that it probably would be good for PWPD if they are in an early stage, but to waite till the voice is already soft is probably to late. I think you should go for it!!!

[stolimon]

i tried a four week program, had an excellent trainer 1 on 1. i had a couple of real bad days and ended up dropping out in my 4th week; i think pizza caused my bad days....

[cjsg]

My hubby takes 25/250 every other hour. His movement disorder doc said he was a good candidate for the pump. I contacted them and as soon as they found out we were on Medicare they were not interested in us and never called back. It is very very expensive. You might want to google it to see what the costs are. The cost of the pump, the medication the hospital and surgeon, then there is the trips to the doctor to get the dose regulated. The pump is detached from the body at night so I dk if that means a person has to take something else just to roll over at night.

There was a doctor and a sells rep that talked at our PD support group and showed a video about a guy that has the pump. The guy got an infection at the sight where the pump attaches, but basically he was very happy with it. The doctor and company rep were making a circuit of all the other PD support groups in the area and talking to doctors about it while the doc and rep were in town.

We live near a large city with a huge teaching hospital and doctor program. My husband's doctor is the only one in the whole city that has been promoting the pump and he has only one person that has done the surgery.

We have decided that we would rather deal with the C/L. WE have been told that at 2000 mg of Levodopa the side effects are worse that the cure.

We are going to take the high dose Thiamine Hydrochloride (B1).

[Joycealice]

I have been on this pump for almost 3 yr. the last 9 months it has not been as effective but I’m told that my PD has advanced is the reason. Otherwise you never know I had PD with the pump the first two yrs. Prior to the pump I had a lot of Dyskinsea and was starting to use a walker. I had such good results I didn’t need the walker and no Dyskinsea. Now, I have “Off” times where I have to Use the extra dose and set dosage my rate higher. I can program it myself for the range of 3 to 5 ml per hr., most patients aren’t allowed to do this, but I have a medical background. It is very important the tip of the JPEG tube is placed at the beginning of the Jejunum where the rx is best absorbed. Even though the results aren’t as wonderful as before, it still surpasses pills or brain implant surgery. I live in Oregon, USA and I am not on this site very often, but I will check back more frequently to see responses.