One of the main reasons I started the Perky Parkie blog was to extend my reach and help connect the Parkinson’s community. Living in Southern California, I’m limited on the amount of exercise classes and support groups I can facilitate. Once I realized that I couldn’t be two places at once and my Parkinson’s made traveling difficult, I wanted to find another way to be able to talk to Parkies all over the world. Enter the internet. Besides being a great place to watch funny dog videos, I could use my online powers to help Parkies share experiences or educate each other about their disease.
So when I came across a comment posted by Dave, I felt it was the perfect opportunity to see if anyone had information about a Parkinson’s treatment, the Duopa Pump:
“Dear Perky,
It was by chance that I landed on your blog. I started to search for information on the Duopa Pump procedure but I directed (very fortunately I might add) to your inspirational blog. Being a true believer of the idea and concept that no one is ever too old or wise not to learn how to improve one’s life, even though it’s heavily influenced by Parkinson’s Disease. As you can tell I am referring to myself and inadvertently to my plight to live a life that does not attempt to mask or cover up the aspects that are grossly influenced from Parkinson’s Disease after 24 years.
What have I learned from my living with the enemy after so many years? Well let me begin by sharing the truth with you on what is the most amazing, most surprising, and by far the most life enriching lessons that I have learned. The lesson is that for all the hurdles that the Parkinson’s Disease community has to deal with every minute, of every hour, of every day, there is a person that has found a way, or should I say discovered the secret as it seems to help each and every one of us. A mistake I used to make until I hit the 20-year-club, was to assume that no one was experiencing my problems, because my problems come with being a member of the longevity club, which members are in smaller numbers. But here is where I learned that my problems are not always solvable with black and white answers. Instead an answer that applies to me, might just be coming from a person with less time than I have, but for who knows why or who cares why, has insight on my problem that I would expect to be handed down from a person even older than myself.
So lets all reach out to each other because we are so much stronger when we are all connected. Together we will win the war and maintain our dignity, our integrity, and most of all our self-respect. Oh yes, another thing I have learned is that we are all much stronger and resilient than you can ever imagine, just keep on keeping on and when we need a hand don’t be shy be wise and ask someone younger. The answers are where you think they are not.
Now back to what I originally started my search for and that was info on the Duopa Pump. Anyone out there with an opinion? I’m listening.” -Dave
Well Dave, you’ve come to the right place! I work in a Movement Disorder Clinic in South Orange County so I get the pleasure of sitting in on many lectures about the treatment options available from pharmaceutical reps or other companies offering various tools for Parkies and sometimes even being a guinea pig.
Here is what I know about the Duopa Pump:
Early this year, the U.S. Food and Drug Administration (FDA) approved Duopa, a gel formulation of carbidopa/levodopa enteral suspension infused directly into the small intestine. This treatment has been available for use in Europe since 2004. This exciting medical advancement will aid in controlling Parkinson’s disease symptoms from the fluctuations of on/off times due to absorption of medications such as Sinemet. The administration of medication being directly infused into the small intestine, allowing it to bypass the gut (which is usually the main issue of absorption). The medication can then cross the blood brain barrier and then work its magic. Similar to oral medication, Dyskinesia (a side effect of carbidopa/levodopa that causes uncontrollable movements) can still occur, seeing as we now flooded the whole brain with drug. We still haven’t found a way to target the small area of your brain that is needing more Dopamine. Hopefully that is on our Parkie To-do list!
A small external infusion pump administers the gel continuously over 16 hours. Sinemet is then used at night when the medication is not being used. And yes, for the fashionable Parkie, you can find an adorable cross-body purse, fanny pack or bedazzle the pump to make it more aesthetically appealing.
Pros:
-Pump allows continuous administration of the medication, lowering the on/off fluctuations.
-Another alternative for those who do not tolerate oral medication due to Gastrointestinal issues.
-Convenient for those who already have a feeding tube placed.
-Alternative for those with Dysphagia (swallowing issues).
Cons:
-Higher risk of site infection near tubing or stoma.
-External pump can be challenging to carry on your body.
-Medication cartridges must be changed daily.
-Unable to get the site wet, so no more skinny dipping.
– Showering can be challenging seeing as you need to disconnect from the pump.
Just like Deep Brain Stimulation, Duopa is another treatment option for Parkinson’s disease, but it’s a personal choice and may not be perfect fit for everyone. To get more information about Duopa, click here.
So now to my readers, has anyone had any experience with Duopa that they would like to share?
I am a 61 year old man who was diagnosed with Young Onset Parkinson’s 17 years ago. On Valentines Day 2021 I had a heart attack. From the day after my cardiac event until the present, I have taken aspirin daily and without fail. My discipline for the consumption of this medication was and is directed by the medical professionals who consistently remind me that if I miss even a day it could be fatal. Recently, I was denied the DBS surgery due to the fact that I was not allowed to go off the aspirin because it’s a blood thinner so it could lead to complications and even death on the operating table. I have just been offered the pump so my question is, has anybody reading this used the pump who has suffered heart problems and experienced negative issues such as bleeding in the brain, blood clots or aneurisms while using the pump? Your responses might help me make my mind up whether or not to move forward with the procedure.
Hello CC,
Wow! I’m sorry you’re having such challenges. I never thought about how having a heart attack would impact your treatment of Parkinson’s disease. I haven’t heard of a connection with blood clots or aneurysms, but maybe someone reading this will have information.
Hello all & thank u for this blog — 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.
I just hope I’m making the right decision!!
The procedure to remove the tubing is in a week and it involves going down the throat to get the tube out of his small intestine.
Curious if anyone has been on this route too – tried it then ended it.
Stay strong ❤️
Kym,
I didn’t know it was so complicated to remove it, seeing as it came out so easily with normal wear. Another thing that concerns me is that he has Lewy body dementia… it’s difficult to have him care for it long-term. It sounds like you’ve made the right decision. Your Dad is lucky to have your love and support to give him the best quality of life. Thank you for sharing your journey!
Hello, thank you for sharing this information. My dad is on Duopa. The medication does allow him to chew his food and be alert. However, I am one who’s rallying to have it all removed. My father is bed ridden, and also has Lewy body dementia. I just feel like that pump is uncomfortable for him. Can you please share how the removal process was? How’s your dad now? I would really love to hear your experience, it would be greatly appreciated.
Hi everyone, my mother had a trial for the Duopa pump – about 13 hrs in she was having hallucinations and was quite dyskentic. She was on the smallest continous dose (0.1mg) does it take time normally for the neuroligists to find a happy medium? She often takes a lot of time to adjust to new regimes.. so I’m wondering if she just needed longer for it to settle?
Reena,
I believe that it takes away to get dialed in. Hopefully, she finds relief soon!
Is she taking any other PD meds?
Yes she is, she is on Sinement and Stalevo 4 times a day. She has always been very sensitive to change and they did a 24 hrs response test with the duopa and ended up turning it off as she was hallcuniating 🙁
Hi! Yes she does, Sinement CR and Stavelo. She also takes meds for memory and confusion – rivastigamine. Our doctor is cautious in trying again as she was quite confused for a short period of time on her 24 hr trial but I geniunely believe she needs longer so we are going for a 4 week trial.
I am a young onset Parkinson’s women who has had PD since I was 23 now I’m nearly 47 and fighting the decision whether to go forward with a do Duadopa over or continue on my medications hourly. I am generally a very happy person and believe that PD has changed my changed my outlook on life for the better. I appreciate everything that life is instead of being upset by all the trivial things of life I used to be. However being so young when diagnosed it also leaves a fair bit of unanswered questions as to what sort of medication regime to go on. Due to age and hormones. Being a women I am at th re age of menopause and I suffer from overheating and being that I’ve had PD for over half of my life now I am in the advanced stage. They don’t have enough information about menopause and Parkinson’s . So it leaves me scared to do Duadopa do to possibilities are even more dyskinesia. However it also scares me not trying what’s been possibly a game changer for most PD patients . I feel slightly alone in YOPD because I only know of one women who is way younger than I am and hasn’t yet come to the point I have or I know of an another who has already hit Menopause within the first 5 to 10 years of having a disease. So it seems that we’re on the fight together yet individually. I am told daily that I am brave. I don’t consider myself to be brave, I consider myself like everyone else getting through the challenges of life one day at a time just as everyone does who has daily challenges in life . I find talking about my PD with anyone I meet helps spread awareness & lets people know that I am not a drug addict , but the Tremors major sweating or dyskinesia is caused by Parkinson’s.
Bea,
I can’t believe how young you were when your diagnosed. I felt that I was alone being diagnosed at age 32. Parkinson’s can be a very lonely place. You’re completely right, there is not a lot of information on hormones and PD. I’m curious what your Neurologist has to say. It seems like Duopa would be helpful… have you also checking out Deep Brain Stimulation?
Hello! I know this post was written almost a year ago but I’ve had PD since I was 28 and am almost 43 and am getting the Duopa pump next week.
These lovely folks made us a custom pump bag for $50!! It’s tons better than the ones the manufacturer makes. And since they make them custom, I am sure that they could come up with lovely colors 🙂 https://www.facebook.com/PumpedBags/posts/1856125251153881
An inexpensive alternative to purchasing a new fanny pack– if you have a shoe repair store in your area, they can redo strips on your Fanny pack. a new pack runs about $100 on amazon. my cobbler charged me about $10.
My partner has had PD for about 14 years.
He was fitted for the Duopa Pump last Dec.
Two days ago the tubing became clogged and nothing seems to work.
He is now scheduled to have new tubing next week.
Is this unusual after less than 6 months?
Bobbi, I haven’t heard of getting clogged within the first year of having the pump. What does your doctor say?
I am currently 54 years old. I have been on the Duopa pump since I was 48. I am relatively active. I’m still working. Much of my success in battling my Parkinson’s symptoms in the last 14 years or so credited to my duopa pump. When it works, it works great. However, I have been battling tube issues for basically the whole time I’ve had the pump.
I have done everything I can think of to try and figure out what causes my tube to plug. My doctors are telling me I’m doing everything correctly. Despite this, I have been getting tube failures which vary in time ranging from couple of weeks, and the most of ever gotten is eight months out of a tube. As fate would have it, two weeks ago I went for replacement tubing. I got about two months out of my last tube.
When my tube fails, that puts my whole life on pause. I am fortunate to have a boss who is very accommodating and I am blessed to have enough thick days to handle this stressful situation neurologist told me it is his experience that you fall in one of two camps–the first camp gets about a year or two out of their pump with no failures. And then there is my camp, where it’s a roulette wheel as to how long until my tube fails. Place your bets!
Sorry about the math–you know what they say–arithmetic is the first thing to go.
I was diagnosed about 12 yrs ago (2010). Got my pump in 2016/2017.
It is so refreshing to have found this blog !! Thank you Perkie Parkie for opening the dialogue!! My husband Was diagnosed withPD in 2009 at age 50 and with the dementia part in 2015. He had adverse reactions to protein and sometimes to food in general. He would routinely go into what we called crash mode which included painful foot cramps. Enter the Duopa pump in 2016. It has changed our lives!!! It has given us all a quality of life back that had been lost. He still needs to avoid proteins but in case of some consumption and pending ‘crash’ the extra dose button saves the day. For anyone on here considering the pump talk to your neurologist and get all the info! I do not know where we would be had the pump not entered our scene!! We have had very few issues. One thing I advice anyone researching and considering to do is make the department doing the procedure puts a balloon on the inside so the tube cannot be pulled out . I agree we need a smaller pump!!
I would love to have a FB support group just for Duopa users. So glad I found this blog!!
Comment to Val:
I am a swedish woman of 62, diagnozed 13 years ago. I have used the duopa pump for a year now and I would never go back! I can however not agree more – smaller is essential! Yes there are smaller pumps coming, but so far from a competing company and with a slightly different medication. I have had problems with infections three times. In spite of this I strongly recommend it, it has given me my life back. An advice for carrying the pump: buy a cheap elastic waist belt with zip pocket. The kind that runners use. Put the pump in the pocket with the display towards your body (tighter) and lock ir tight around your waist.
My husband started the Duopa Pump in Dec.
All was fine until he passed out 2 wks. ago.
Internal bleeding caused by Afib medication and extreme anemia.
While in the hospital during an endoscopy, they discovered the tubing from the stoma was linked and they couldn’t/didn’t know how to unkink or replace original tubing.
My husband is waiting for blood count to reach a higher level before surgeon will see him.
He is still getting Duopa but is going into the stomach and not the small intestine because of the kinking tube.
Any ideas??
Oh no, Bobbi! I am sorry to hear that your husband is having so much difficulty. My only advice is to contact Duopa’s patient support. They have RN’s available to talk to… I think that would be a good place to get information. Try this phone number for the Duopa nurse. 844-438-6721. Hope this helps!
I have had the pump for a year. I had adjustments made 4 times already and may need another one. I am happy to answer any questions . My hope is that someone finds a way to make the pump SMALLER! Two AA batteries a week seems prehistoric!! Also, regarding showers etc. I can remove the pump for up to 2 hours at s time
Showers, swimming no problem. I can disconnect more than once a day as long as i dont exceed 2 hours. Hope that helps.
Fyi. I am female .age 59 diagnosed 15 years.ago.
Val, thank you for sharing your experience. Hopefully, this next adjustment will get it working better for you. I know that it is just a matter of time before they make the pump smaller…. just look at diabetes pumps.
Hello. I just found you post now, a few years since you shared you have the Duopa pump and that you could share info about it. My mother is deciding right now if she should try it or not. Now a few years later for you, do you still have it and is it still worth it to you? If so, what do you do with it when you sleep at night? Thank you for your time and I wish you well!
My dad just got the Duopa Pump and is not seeing “instant” results. I’ve read comments that some people have and some people need to wait for it to really work. Thoughts/Comments/Sarcastic Remarks?
HenryCat, I’ve heard that for some people it can take awhile to find the correct dose.
It took 3 or 4 months of repeat visits to the neurologist to get the best titration for my husband.
Hello! My father has Parkinsons and is considering the Duopa Pump. I notice folks have written about protein consumption. Anyone have a suggested/recommended food plan regarding the timing of protein and medication? Many thanks!
For me Dr. Veronica, Protein impacts my medication immensely. As you might know that Levadopa and protein are both amino acids so they compete for absorption if taken at the same time… that is why Duopa has become popular, it bypasses the gut. I have had the best luck with taking my medications 30 minutes before a high protein meal. But as you have probably heard that each Parkie responds differently. Hope this helps! Allison~*
Actually the duopa pump bypass is the stomach and goes directly into the small intestine at the duodenum, therefore protein is still a problem. The neurologist warned us that this would be the case as we were considering the duopa pump. What works best for my husband is to delay consuming any protein until the end of his daily activities. Usually that’s suppertime, however if we’re going to a concert or movie in the evening, he delays eating protein until after we’re back home.
Carol, that protein absorbtion is such a bear! Not everyone is impacted by it, but when you are sensitive to protein, finding the right treatment can be challenging. Thank you for sharing your story.
I take more than 40 Rytary capsules and Sinemet tablets each and every day—you read correctly, more than forty (40). Yet I still have vast “motor fluctuations” —that’s what the neurologists call moving just fine and then a few minutes later being totally immobile A few of the notable consequences of my fluctuating motor: standing in the crosswalk as the lights change (in Houston it is rumored drivers can earn points when frightening or brushing off pedestrians); failing to Go The Distance to the Finish Line placed with precision at the porcelain fixture down the hall. Trust me on this one novices, no amount of real, perceived or fraudulent effort—even when accompanied with audibles that would make your speech therapist break a small but brief smile—can overcome the hostess’s evil eye and ill will at your Gross Inaccuracy.
So if there were an ideal Dope—oops, candidate for Duopa, they should look something like me, right? Some allowances for scar tissue resulting front fenders and nerf bars or hostess hurlings of crockery disassembled in her dishwasher could be made for other Duopa—-ahh—Candidates.
I read the Duopa files and will “Pass” on this company’s fine offer.
In 3 categories of risk, convenience and cost
bulky and heavy with pump, cartridge and straps; not at all discreet with exposed tubing and such; too much daily maintenance at the end of each day the entire assembly has to be flushed; only 16 hours per day means regular meds at night and other times the Duopa is not available; annual factory service requirements for the pump and electronics—no free loaner and how long does a servicing take; requirement of keeping Duopa frozen then thawed in a refrigerator and then refrigerated until used; a very short shelflife; cleanliness requirements for the stomas (one through the abdominal wall, the second into the small intestine; unsealed controls will be problematic when accidentally wetted (rain, spills, wayward sprinklers, etc); the narrow temperature operating range will preclude outdoor activities below 32 F; poor Electromagnetic Field sheilding of the electronics necessitates surprisingly large separation requirements from low power EMF sources; users are advised to use coins to operate the device—
Duopa is available from one source only and is priced at annual outlays near the GDP of several Sub-Saharan nations—okay that is an exaggeration but expect to pay tens of thousands per year at my level of need. Oh, the device runs on AA batteries which last 2 days—battery costs will be a few hundred dollars per year. And then there is the cost for the stoma snd repairs to the stoma.
There’s the report, you decide.
Good information to keep in mind.
Hi Petersen, we shared some of your concerns before my husband started on duopa over two years ago. Our concerns were largely unfounded as I think you would also find. He is had none of those problems you’re concerned with and only a few wrinkles. He was taking 24 sinemet a day and now uses Duopa 24/7 so no need for daily flushing and changes batteries once a week. They are also supplied by the specialty pharmaceutical company. Both Duopa and batteries are covered as a medical procedure, not as a prescription drug. That is extremely helpful under Medicare. In addition there is a special assistance fund that you can apply for if you need it. My husband and I would be happy to talk with you if you would find that helpful. Just email me and I’ll send you our phone number. Gearhace@gmail.com
So good to hear your story!! My husband has had his pump for 3 years and it has changed our lives!! This is the first place I have found dialogue with others about the pump. Refreshing to hear others experiences!!
Hello Peterson
I just subscribed to this wonderful blog! Thanks Ms Perkie!
I had the Duopa procedure started in October 2017 after about 9 years post PD diagnosis. The symptoms I experience run the gamut of movement/motor disruptions except for tremor which was absent until the last couple of years and now only causes a small thumb and finger twitch when off.
I was taking vast quantities of the usual 50/200 extended and 25/100 immediate release generic Sinemet as well as Azilect, Ropinerole, and Amantadine. We had to keep bumping it up as the wear-off grew more and more. And the most frustrating were the gut and bowel issues that made it difficult to predict or properly control off times and increasingly common dyskinesia.. So my neuro suggested Duopa and I did my due diligence research. My conclusion was that, while somewhat crude, clumsy, and inconvenient, the results would be worth the increase in quality of life.
I was correct. Peterson! It was a winner for me. I agree with most of your points as to possible concerns, but cannot address all here.On balance I think it works well for me.
Bulky, heavy and not discreet:
Yes you are correct but I have kept up a very active lifestyle and except for a few mishaps, it is worlds ahead of pills. I wear the fanny pack. It gets worn out but can be replace. I love to fish and wish I could put the pump in a truly waterproof pack…I drowned the pump once about a month ago but it was replaced promply overnight
Cost:
I have had a great deal of interaction with my Specialty Pharmacy (Accredo) and my Medicare Advantage plan on this. It is a Part B covered infusion therapy and for the single cassette per day regimen the 20% copay runs about $950/month on my plan…it is covered under Medicare.You pay a small amount for rental of the pump for 11 months then you own it. If you don’t have Medicare I do not know. I pay somewhat less than the mountains of Sinemet and Dopamine Agonists and other meds I was previously taking.
Daily maintenance, cleaning,and refrigeration:
Yes, it does take a bit of time each day to keep the Stoma (hole in your abdomen above belly button and just below sternum) clean and free of blockage. The tube that attaches to the pump and cassette tube must stay relatively in the right place in your small intestine. The flushing in the evening takes 3 or 4 minutes and is easy. I have to wipe the stoma area clean a few times per day. I have had a few issues with a troublesome leakage problem with my second Peg-J tube after my first tube only lasted about 6 months and leaked/broke/was ripped by me or a combination. And it doesn’t come to you frozen, only refrigerated. I am waiting this morning for the friendly FedEx driver to bring me my first “Double shipment” which is in a shipping ice chest and needs to be stored in the refrigerator.until about 20 minutes before you plug it in and start that days infusion. .I have graduated to a higher usage with 2 cassettes a day and wear the pump to bed for the 2nd dose .
But its still worth it!! When it works, which is 95% of the time, it almost completely eliminates very advanced movement difficulties, and significant freezing and gait disturbance.The waitress gives me a wink when I walk by now instead of looking like she feared attack by a shufflebum!
My problem now is lack of a companion or caregiver as I am living alone for the first time.
Pat
Just wanted to comment that the batteries last at least a week – I change them once a week and haven’t had them run out sooner, and the pharmacy supplies them. As to the pump needing either maintenance or repair – I had a leak from a cartridge that necessitated having the pump replaced. The leak happened on a Saturday afternoon and the new pump was delivered on Sunday morning.
My dad has PD along with myasthenia gravis. He has the pump but he is also gravity tube fed. Has anyone else needed this option and therefore knows if he can be fed through the J tube as well? He has been vomiting lately so we would like to keep his stomach empty but no Dr’s seem to know if the formula will cause absorption issues.
I am about to have this procedure and am excited and a bit nervous. I have chosen to wear the fanny pack. How do I wear dresses with this pump in the fanny pack? I don’t want to have to wear button down shirts and pants all the time.
You will have to either cut a slit for the tubing to poke out through, or choose dresses with buttons down the front. My mom has this pump and she opts for skirt/top vs dresses nowadays.
Hi, I’ve had the duopa pump for 20 months now. I carry it in a stretchy waistband that is marketed to runners. When I wear a dress I just put the pump in the waistband and pull the dress on over it – as long as it’s not a tightly belted or small waist style, it sits fairly flat.
Yes! I have had the Duopa Pump for 3 months! I have times I want to throw it out the window! And I have been back to my Specialist- who is a 4 hr.drive away-3 times- since I got it! I even got mad and went to make Appt. to have it took out! But when I called them (Dr.) she said- ok- just stop the Duopa- and go back on your C/L pills! The day I left for my 4 hr ride to the Dr.! I had my pump back on and was glad to have it! I know with it! I can do almost anything and I don’t worry bout down ( off) time! My Dr. If I had days I wanted to take my pills- I could— but I never trust myself going anywhere –(unless it’s a very short time) without it!
Thank you for sharing your experience. Happy to hear that you’re finding something that works for you and many others.
Hang in there! My husband has had it for 2 1/2 years. We had a serious hate love relationship his this pump the first 6 months. From being overdosed to not Enough meds to not sleeping. We have now grown used to it & know all the signs! He has had to up his duopa a few times also but it’s wonderful now!!
Hi all, just a question about anyone’s experience with sleeping issues on Duopa. My hubby has only had it for less than a week but he’s having issues sleeping, able to fall asleep but wakes around 3-4AM and can’t get back to sleep. We stop the pump between 9-10P. They just suggested last night to take 1 of his Rytary but it didn’t make a difference. Daytimes seem to be improving with less down times for which we are thankful.
Any ideas/suggestions?
Thanks
Barb, I hope someone can respond to you that have had similar issues. Sound awful!
Ask if he can try using it 24/7. That’s what my husband does. Seems like the sudden lack of Duopa caused PD symptoms that woke him. He sleeps better now—not great but more than before. We use one cassette every 12 to 16 hours. Depending on what time he needs to change it we will opt to do so before going to bed instead of in the middle of the night. His prescription says two per 24 hours but that seems very wasteful to us.
Hi! My husband has trouble sleeping at night if he gets too much duopa during the day. With trial and error we now take his pump off at 4:30 – 5:00. You could try taking it off earlier and see if it helps. Good luck!
I have 2 pumps. One for the day and one for the night. The daytime pump (6am to 10pm) has a continuous setting, (ml/hr) plus an extra shot. I can take the extra shot hourly if needed.
The evening has lower continuos seating (ml\hr) and has the same extra shot facility as the daytime pump. The beauty of having two pumps is you’re not forever changing the settings.
I’ve been on the Duodopa Pump for ove 3 years.. I find it to be excellent. It would be better if the cassettes didn’t have to be refrigerated.
I have tried all the different pump cases and would say they are all pretty useless. If someone could come up with a comfortable design it would be great. The most comfortable design I can suggest is something like the police shoulder holster with the pump located directly below your armpit.
I currently use the fanny (bum bag) pack. But my keeps telling me to pull my pants up.
The eveni
John, I have never heard about using 2 pumps. What a smart idea! Thank you for sharing!
We have had similar scenarios and yes, interrupted sleep is NOT good!! We tried the pill routine at night but it was still less than ideal. We now let the pump on beyond recommended time with neurologist approval and it has made all the difference!! I saw a comment on here that someone else has been doing that. It would be worth a conversation with your doctor. I hope you find a solution soon for the sake of your sanity!!
We have a duopa pump. By accident I found your page looking for assistance for a pump repair. I say we because my husband has the pump but it takes both of us together to care for him. This is a family disease and all of us are affected. The Duopa pump has allowed Dean to live again. Before surgery we entered the hospital in a wheelchair (unable to move just part of his body. Mostly moving above the shoulders) we left one day later and Dean walked out of hospital and we were able to eat at a restaurant that day on the way home for the 1st time in months. He has had obstacles and this is not a perfect cure but it has been a blessing for him. It has been a year now since surgery. We are thankful that he was able to have this procedure it has truly improved his quality of life
Sharon, than you so much for sharing you experiences with Duopa. I know many of us are looking for information and you have helped by commenting. Best of luck to you both!
We have had a similar experience. My husband has had the Duopa pump about 18 months. Before that we always had a wheelchair with us wherever we went and used it at least several times a week. I can’t remember the last time we needed it! However, consuming protein continues to interfere with the medicine’s effectiveness, just like it did with Sinemet. So we have to plan eating out carefully. He uses Duopa 24/7 and is getting more sleep than he had had for years. We have also had several pump malfunctions. I wish they let us keep a spare pump on hand. However they are great at overnighting a replacement.
Thank you for sharing, Carol.
This is wonderful to read! So happy for you! My husband has the pump as well & is doing so much better!
Does anyone else know of anyone who has had an infection at the site of the tubing? My mom has had the Pump now for 1 year 4 months and it is great! However in the last 3 months, she has had 5 surgeries due to a growth from where the tube is inserted. It is now infected again and they want to just cut the growth off but it seems the infection may be due to the tubing itself. Can it be replaced or have any of you had this occur?
I’m sorry you’re Mom is having so much trouble. Have you contacted the manufacturer?
No not yet but this is a good idea as well, thank you!
I am in my 11th year of living with PD, and on 5th November 2017, i have my Duopa Pump with me from 05:00 until 22:00 – this has been a life changer. I was hospitalised for 3 days whilst i received the medication through a feeding pipe in my nose which went down to the small intestine. I was deemed to be a good candidate for the pump, and my husband is thrilled to have his wife (me) back. It does take a little getting used to – maintenance etc. and is heavy, but has changed the quality of my life enormously. Has anyone had experience with travelling abroad with the pump?
Hi, my name is Robyn. I live in Newcastle Australia and have been using the Duodopa pump for a couple of months with wonderful results. I was diagnosed with PD 12 years ago, but had obviously had it for 10 years before then. I opted for the pump because my PD symptoms were becoming worse:e.g. painful dystonia, frequent freezing attacks, poor sleep, stiffness, fluctuations of medication effectiveness, dyskinesia. I have unfortunately however, had problems with blockages of the actual duodenal tube and have had to have it replaced. This thankfully, was a painless procedure. We are fortunate here in Newcastle to have an excellent Neurological Department at our main public hospital and two highly skilled and empathetic nurses. In addition, here in Australia our Federal Government’s Medicare Scheme covers the total cost of the treatment- at least $80,000 per year! My husband, Ian, is over the moon to, as he puts it: “have the love of my life back”.
I am so happy that you shared your story. I didn’t know that Australia had Duopa and the treatment is covered by Medicare. I wish you and Ian a very long happy life together. He sounds sweet and you are a super star for having PD and its symptoms for so long. Thank you for your comment!
Good morning, Perky. I am Robyn’s husband. Duodopa (Australian name) is proving to be lifegiving and lifesaving for Robyn. May I share some comments?
First, anyone considering Duopa should consult only Duopa specialists. Our nearby hospital has two, thank the Lord! Robyn’s specialists are the main reason for her successful use ofDuodopa. These specialists consult only with PD patients. They do not treat anyone or anything else.
Secondly, Robyn has found suitable fanny bags, colour co-ordinated, on WISH from USA – very cheap.
Thirdly, Robyn can now do everything herself to set up every day and give extra doses.
Fourthly, Robyn’s family and friends are very supportive of her. No-one has crossed to the other side of the road for fear of “catching” PD. This support is SO important.
Finally, if anything, her PD has brought us closer together!
Thanks for listening, Perky.
Oh yes! Australia has about 800 people using Duopa (Duodopa).
Be open to God who loves all of you!
We very rarely get to hear from the spouse of a loved on who has Parkinson’s. Your experiences resonate with many of us. Thank you for sharing your story, I know it will be be very helpful to others.
Hi my husband got kd at 50 he is now 60 he has had the pump just on a year he has been getting stranger and stranger we think maybe dementia us kicking in too last sunday he had pulled the tubing from his stomach nearly 12ins i rushed him to our local hosp here in perth wa.. after 2 attempts of trying to redo it at a hosp that never treats pts for pd they are now agreeing to send him to the original hosp after his neurologist nearly went to get him himself and take him i told them that the hospital specilizes in tge pump but tgey would not believe me so 2 rides in ambulances stressed him out so much that he was a code blue this morning we were there tried to get an ecg but his bp n heart rate were too high just make sure for new people you go to the hospitals that specilize in pd
Oh my God Rosemary! I am so sorry you have been going through this with your husband! You are so right about hospitals needing to have some knowledge about Parkinson’s. I will keep you two in my thoughts and don’t forget to practice self-care… I can feel how much you are concerned about him. Keep us posted!
My father, now 84, got the Duopa Pump last summer and it’s been a Rollercoaster ride! He first got an Upper Respiratory Infection after I believe he aspirated liquid post-op. Then he pulled the tube out of his stomach 2 or 3 times. We went to hospital and had it put back in, but this last time we asked that it be removed permanently. He too is suffering from Dementia. The pump itself was great at helping regulate his movement, but his mental status prevented us continuing it.
I wish you the best to you and your husband.
My dad is considering the Duopa pump and had DBS surgery in 2012. He has had PD for about 25 years and is currently 67 years old. He had DBS surgery at Mass General and worked very well but still has freezing on his off times which is very frustrating. Has anyone had experience with the pump along with DBS? Thank you! 🙂
My husband had PD for 8 yrs when he started Duopa. It was life changing for him. He went from being in wheel chair sleeping n not functioning to walking w walker n awake n busy full days. Back in his workshop enjoying his hobbies again.
Until one day he started declining. Second day gave him extra dose every 2 hrs. Still declining. Very weak. Sleeping n then third day fell. Suffered a brain bleed that eventually led to hospice n then dying. After checking into his decline learned the tubing had come out of the jejunum n coiled up inside of him. His decline was caused by him not getting his medication. I am not sure how this could have been avoided. I want to share this very sad tragedy. I felt the 3 mos he was on duopa i saw a big change n witnessed a miracle in the change in my husband. I do not want anyone to go thru what we experienced.
I am so sorry you went through this loss. Thank you for sharing your story, I’m sure if will help many people.
Hi all,
We had the pump installed in my 67 year old mother in September with initial amazing results…literally brought her back to life. Came in wheelchair bound and left walking and talking. Sadly the effects started to fade. After many adjustments we started demanding answers. We were devasted to learn she has a rare form of Parkinson’s called MSA for which the pump does not work. A new doctor found the trademark signs in an MRI taken BEFORE we put in the pump that “the best Parkinson’s dr in the nation” missed. Our advice…demand to see the results of every test you have and have them explained and discussed in detail…don’t make the same mistake we did
I did not know that MSA is contraindicated with Duopa! Thank you for passing along your story. Hopefully it can help someone thinking of doing Duopa as a form of treatment. Wishing you all the best. 💕💕
Well…not sure if contraindicated is the right word…msa patients don’t have a sustained response to medication. It worked for 3 months then began losing effectiveness as with most meds she has tried. However it is not a specific treatment for msa but can be a “Hail Mary pass” try to see how long you can get from it. We got three extra months…just wish we knew before we started that it would stop working eventually
My sister too has MSA and fortunately L-dopa works for her although she takes a huge amount. She is now having to get up every 2 hours to take L-dopa to ease her Parkinson’s symptoms so her doctor is advising Duopa. She’s had MSA for almost 4 years now. I think her symptoms are more Parkinson’s for right now. She has terrible low blood pressure which is more MSA related. Hopefully Duopa works for her although it’s only a matter of time before L-dopa stops working for her. Stumbled upon this blog googling Duopa. This is great.
My mom was in the same place before the pump…every two hours…super high doses. The pump worked for about 3 months and we continue to increase her dose. It does make giving the medication very easy and she doesn’t have to try to swallow all the pills. She has same low blood pressure issue. A pill to raise her blood pressure has helped with that in addition to a specialized wheelchair that allows us to recline her as needed. Hope it works well for you. MSA is a terrible disease. We will keep you and your sister in our thoughts
Same experience only doctor knew she had msa and still recommended it.
Wow, great site, thanks for all the info. The neurologist here in Havasu Az. don’t even know about the pump! Anyone know if this procedure is done in Las Vegas or Laughlin, Phoenix? Keep the reviews coming please. My dad is 82, has had P.D for 20 years, cannot walk anymore, talking horrible. But no shaking, thanks for small miracles. He is interested in the pump. Thanks in advance to anyone with info.
I see a lot of comments and questions about covering the cost of Duopa. Go the The Assistance Fund, theassistancefund.org. Abbvie referred us there. We were told that as long as you have some insurance, Medicare or private, you will be approved for financial assistance. This has been working for us since October 2016. The effectiveness of Duopa has been disappointing, but almost all of the cost has been covered.
Our dr is in Tucson. Cynthia Reed promotes duopa. Watch closely if declining w duopa. It was a miracle for my husband until the tubing came out n couied up inside of him. He drastically declined back to shuffle fell n suffered brain bleed that was responsible for him passing away. Duopa was life changing for my 78 yr old husband.
Hi,
My husband just got the pump from the Lou Ruvo center for brain health at the Cleveland clinic here in Las Vegas. We’re still getting used to it abs adjusting his meds. See if you can call amd get an appointment!
Thanks for sharing! Wishing you great success!
My duopa procedure was done a month ago. When my pump was programed, I was so happy. It seemed to work so well. Slowly my symptoms were all over the place. I have been back to see my team and they taught me how to change my doses. Nothing I do seems to work. I am the second patient to have this
Done at uva. Are there people whose bodies will not accept duo pa? I am close to yanking this tube out of me.
My husband just had the pump as well. Its been five days now since his surgery.. I was hoping for the best and I guess my expectation was way to high. Id heard nothing but good about this pump. But he actually hasn’t had much good with it since we got home. He’s still having problems with his walking ability. just sucks if he went through this surgery and it doesn’t work. I have been giving him extra doses when he needs them. seems to help somewhat but not enough Going back to the doctor in four days hoping they will adjust it so he can have more meds. We decided to have the pump on 24 hrs instead of the 16 hrs. didn’t want to be taking meds in the middle of the night. Hoping this will get better for him..
I hope he can find some stability.
Thank you so much. I so hope that adjusting the pump will help with his off periods. just heartbreaking when he isn’t even able to get out of the house and enjoy a least a few hours a day. He’s really be mostly in bed since we come home after having the surgery. I am just hoping its because of the surgery and he needs the rest and to heal.. we are going back next wed nov 9th so the doctor can see how he’s doing. Hoping to get a good report that he needs it adjusted.
Sending you positive thoughts! 💕
We are having a somewhat similar experience. Very little good “on” time each day, but at least we have some. They are going to re-titrate tomorrow. Fingers crossed!
since writing my negative comment, i am grateful to report that duopa is working wonders for me. it took some time, but now i love it! i cannot imagine living with parkinson’s without it. i urge all parkinson’s patient’s to check with their doctors to see if duopa is an option for them.
pam craig
ps – i now know that hope and patience are key to living with parkinson’s.
I’m so happy to hear that Duopa has helped. I have a good friend who’s thinking of doing it. Thank you for you for sharing.
Happy to hear it Pam! Good luck and may your journey continue to be a positive one!
Pam. Do you still have your pump? My wife had procedure at UVA. As well. How have you handled the side effects? Pardon me for asking, but are you late life or are you early onset? Have you had DBS? I am trying to access the long term effects as my wife if early onset.
Hi all…my mom just had the peg j tube installed and we are starting titration on Friday. My mom is currently unable to walk unassisted, experiences confusion, and terrible pain from dystonia. We are hoping the pump will help with the pain but I am wondering if it is possible that she will be able to walk again. Had any one experienced this? Will she get out of her wheelchair and walk on Friday?!
Hello guys and gals! Great conversation going on in the comments of my Duopa blog. Just wanted to let you know, I wrote a new blog on ways to carry the Duopa pump. Check it out: https://www.parkinsonsinbalance.net/2016/09/how-to-wear-the-duopa-pump/
Does anyone have information as per insurance coverage for Duopa pump. Currently covered by Medicare as primary Insurance and United Health Care as secondary Insurance. Medicare covers procedure as a Part B Durable Medical Equipment. UHC drug portion will not cover because it’s labeled DME and the DME portion of UHC points us back to the Drug plan. Which leaves me holding the bag for about $1700/month. If anyone has info how to get this covered, it would be greatly appreciated
We are having the EXACT same problem with the EXACT same insurance! Finally got approval for coopay assistance program which brought coopay down to about $400 a month which is not great but a lot better. I called everyone and screamed and shouted for my mom to get what she needs. That was the best they could do. If you find another way please let us know. We couldn’t get it any other way. Finally having tube put in on Thursday and will start titration next Friday. Good luck!!
Thanks for reply and best of luck. Tried Copay Assistance and it was a no go.
Just have to keep after UHC
Julie In the past, I had contacted NY State Insurance for coverage of medicine that was not on formulary. With their assistance UHC covered it. This is web address for NY .http://dfs.ny.gov/. I don’t know if your based in NY, but I’m sure if enough people file complaints with their State insurance regulators, it will put pressure on UHC to accommodate. Again best of luck.
Thank you! We did contact them, filed an appeal and I continue to call them daily in an attempt to get it covered. What were the magic words that got you covered? What should I say to them? Thank you soooo much for the help. We do live in ny
Julie. I contacted the Consumer Service Bureau of NY State Insurance Dept. ( I gave up with UHC ).
There address is One Commerce Plaza, Albany, N.Y. 12257. Web address http://dfs.ny.gov/.
After stating my case, they made UHC cover the medication. If enough complaints come in it may work with Duopa also
Julie I think you misunderstood me. I did not get DUOPA covererd. I’m still trying. BUT I was able to get a medication that UHC refused to cover in the past, covered with the NYS Insurance Depts. help.
Got it! Sorry! Thank you! I contacted them today and filed a complaint. They said they will respond within 14 business days. Lol!
Hi all, my father (age 83) had pump installed last August, but still haven’t started using yet due to major complications with Anesthesia ??? Now I’m trying to figure ou how it’s covered by his Medicare PDP. Got a fright today when researched on Medicare.gov and discovered “not on formulary” of his plan or any other PDP offered in Kentucky. Retail cost approximately $1700/month. What are criteria for assistance through Abbvie? and where can I get more info?
I would call Duoconnect line. I will check with my Abbvie rep in our office this week and see if she has any other thoughts.
Met with my Abbvie rep this morning and she recommended to talk to a “reimbursement specialist” at DuoConnect the phone number is 844-386-7222 or 844-386-4968. Everything is covered by Medicare part B, not D. You can also get info on their website, http://www.duopa.com Hope this helps! Keep us updated.
Wow, thanks for checking! Sounds promising. Will follow up once I have more info. Thanks again.
Wanted to update, sorry for delay. I called the Duoconnect # and was told very confidently that all would be covered by Medicare Part B and since my father has a Medicare Supplement, he should have zero deductibles or copays! All very welcomed news. Thank you for the information!
So happy to hear!
theassistancefund.org
So far as I know our insurance has paid for the meds and pump. He has Medicare and Blue Cross for his supplement insurance. I hope they pay cause we cannot afford it
,I was told that Medicare and the supplement insurance bcbs my husband has will pay for the complete procedure and the pump and meds because the meds are classified as part of the pump so its paid for. they haven’t sent me any kind of bills for it so I am assuming its paid for. Wasn’t ever told any different. Lord I hope it will be paid for cause if it isn’t we will be having it taken out..
This site is very informative. Anyone with information to share on how they selected a team to do the Duopa pump surgery? Seriously considering this option and would like to have someone with experience leading the charge. Thanks, in advance, for your help.
I am so excited about the Duopa pump for my husband, however, we are having difficulty trying to find medical centers in Boston that have been trained and are doing this procedure (believe it or not). Duo-connect would not give me this information directly. I would appreciate hearing from anyone who has had this procedure done in the Massachusetts area. Thanks.
HI
My wife just had the pump turned on today. The stoma was implanted in April. She is the first patient to have it done at the Massachusetts General Hospital in Boston. So far the doctors and the Duo-connect group have been wonderful. They have been with us every step of the way. This is her first day on the pump and she is doing great as they adjust it to get the right level. It will take some time for them to get it right. We are confident they will get right.
Awesome! Let us know how she does.
Allison, just wanted to give you something to think about. There was a gentleman that asked to talk to us on my husband’s follow up the day after the DUOPA pump; he had DBS and was having the same issues as you. He is considering adding the DUOPA pump to his treatment. Ever thought of that? I am just amazed thinking what the combination could do for PD folks; My husband has very little dyskenia, even when on RYTARY. Just something to think about. Oh, and BTW, our friends and family are so amazed..they say we have our Ron back 🙂 ( my husband).. the difference is just crazy 🙂
To clarify, I mean that DBS wasn’t for him since his issue was not movement, it was the wearing off of meds. He takes no PD meds now except for one SINEMET immediate release if he goes to bed early and needs it before the morning.
Should the pump be something a 48 year-old woman with Parkinson consider? I am wondering if I will be able to be active in sports? And excuse me in advance for asking, how does the pump effect ones sex life. It doesn’t seem very “sexy”. 😬
Ha! Coming from a girl that had a colostomy bag for 13 months, I feel you! I feel like it could a little planning, seeing as you would have to disconnect from the pump. So spontaneous sex would be challenging. But other than that, I don’t see any other downside. Having your PD symptoms under control is pretty sexy too! Ha! Great question.
Yes, Allie, the pump would be wonderful for you 🙂 Sports are a yes I would say, unless it is a contact sport like football 🙂 You need to get creative with your pump holster; we went to our local leather shop and one is being made so that my husband can attach it to his belt. It has to be upright to have the pest pumping action. You can take the pump off for up to 2 hours without having to use meds or flush the tubing. Does that help : )? My husband is going to have a colonoscopy in a few months and I will disconnect before the procedure and then reconnect right after. He will tell you this is a miracle – no off times! but if he does feel a little off, he can use the extra dose up to 2 times daily ( he rarely has to )… No worry about eating times or really what he eats…there is just nothing bad we can say 🙂 It takes a little extra time and effort on your part for connect and disconnect, but it takes maybe 5 minutes top ( probably not that even) to do either. It just has to be refridgerated for travel, but they provide the cooler and ice packs that can be refrozen for that ( Abbvie)..We are getting ready for a cruise soon. nothing is stopping us now 🙂 Any more ? ask away 🙂
Toni, my husband is on day six of his duopa. Days are great but evening are bad. Way worse then they were before. A lot of freezing & he even fell last night. Did you have any problems like this in the first week. I know we have to get it tweaked on Tuesday but we are just a little worried. Thank you! Kathy
Kathy, Hi! I am sorry,, I just now saw your post :(… How is your husband doing? It sounds like it is not callibrated correctly.– he should be MUCH better than before! My husband does not have freezing..I hope tweaking it gave the results you wanted! Best wishes to you.
Thanks! Yes he is much better now! Turns out he was getting too much meds. Which was making him feel like he was taking muscle relaxers. Glad we are past that!
I know, right?! Medical technology and how it gives us our lives back! I have heard about using DBS and Duopa together. Unfortunately, I am not a candidate for Duopa due to have colon cancer and abdominal complications. But thank you for the reminder! Give Ron a big high-five for me!
aww, I am sorry to hear that,, BUT I am giving Ron that big high five for you! 🙂
On June 29, 2015, twelve years after my Parkinson’s diagnosis, I underwent the peg j tube procedure at St Francis South hospital in Tulsa, OK. I received my Duopa pump immediately thereafter. My neurologist, Dr Kevin Klos (a movement disorder specialist) completed the pump adjustment the following day. The effects were almost instantanous. No more “off” time during the sixteen hours the pump is in operation. No more diet adjustment. No interference from protein (even after eating an 8 oz filet at my favorite restaurant). Bouts of sadness and depression almost non-existent. Balance, and steadiness improved. Energy levels went up and my general attitude is much better overall. My wife and caregiver, Wanda, was as positively affected as I, if not more so.
The pump is easy to use, wear, and maintain. You will find you own way of carrying the pump (about 1 lb,, 3X7 inches) whether in the original carrying case or one of your own choosing. It is durable and easily adjusted.
After 8 months on Duopa and the pump, the whole experience still seems like a miracle. The cost is covered by private and/or private insurance and Medicare. I was extremely fortunate that my neurologist was one of the few in the country who had completed training in the administration of Duopa and the use of the pump. I have no interest in, nor do I work for any of the companies affiliated with Duopa. Abbvie pharma is a great source of information about all things Duopa. Good luck and God bless.
Awesome! Thank you for sharing!
Awesome news, Andrew! 🙂 your reply sounds so much like mine 🙂
Hi all…we are trying to get the pump for my mom and Medicare keeps denying the claim for the medication. They will cover the surgery but say they will not cover the meds. Abbvie has not been very helpful. Just relaying the info about denial to us. We don’t qualify for the additional monetary support and we are at a loss. Anyone who can help please do! My mom has gone from walking independently to relying on a wheelchair, walker, and/or nurse within the past 7 weeks. Her parkinsons is “atypical” and rapidly progressing. On our 38th cocktail of meds since diagnosis only 3 years ago. We are losing her and this is our last hope. She does not qualify for DBS. Anyone who has any advice would be welcome
Where do you live?
New York..we are working with Columbia presbyterian hospital
And Medicare isn’t helping? Has your Neurologist appealed their decision?
Yes. And we were denied again
Hi, Julie! I am surprised that ABBVIE isn’t trying to help you; they WANT to get their product out. Have you talked to a rep from them and not just a phone rep? Not sure about medicare; do you have insurance for prescriptions? I wish you the best of luck because this product is wonderful. I will tell you that the parkinson’s patient has to have a strong support system to help them daily with the care of the peg-J tube, but it’s easy peasy 🙂
Yes…we have been working with our assigned nurse case manager and reimbursement specialist. She has my father and 12 hours of nursing care a day. We are waiting for community medicaide (a ny only thing) to kick in and pay for the nurses but we are running out of money and we need to to get her this medication
Andrew.. my husband just got his Tue.. Nov 2nd. It really hasn’t changed anything for him We have the same doctor Klos. Hes really a good doctor and very kind .. I am hoping that it just needs to be adjusted so he can have more meds administrated . I personally don’t think hes getting enough Meds.. We go back Nov 9th in four days so he can adjust it and see how he’s doing. I am happy that I seen someone from Oklahoma on here talking about it.
Hi Andrew, I was curious on how is it going after 3 years, my mom is 88 and is not too sure about the pump, I have been looking into it because she can hardly walk and Rytary does not help her.
Hello again! Well, my sweetie had the surgery for the PEG-J tube on Tuesday, Feb 16,2016.. The DUOPA pump was started on Wednesday Feb 17, 2016. He had very little pain with the surgery, and the pump seems to keep him quite level during the day; no off times. If he starts to feel a little off, he can push for an extra dose. The morning dose is nice, too; gives him a boost to start the day after off meds all night. He can wear the pump and get meds up to 16 hrs a day; he usually does the same as RYTARY, 12 hrs daily. The support you get from the company Abbvie, and DUO-Connect is fabulous. Any questions, please ask me! We could find very little about any of it, including anyone using it in the US. There are people still using it that liked it so well after the clinical trial that they kept it. DUO-CONNECT provides mentors if you choose to do that; we had a gentleman the same age as my husband that has used it for 5 yrs and loved it. I think it is going to be so good for my husband; I will keep you posted as it is early in the game, but I am so glad we had this option.
Such awesome news! Thank you for keeping us posted!!! I am sending all of my positive thoughts to you and your husband! Let us know how he does as he uses the pump more!
Thanks Allison! This process has been amazing! ABBVIE offers so much support! My husband never had many diskinesias, even on so much med, but the pump has actually calmed what little he had down almost completely. He does NOT have off times like he used to all day long. He is so much more like his old self! We are only one week into using the pump, but we are sooooo encouraged! Right away he noticed the difference. Anyone with questions, ask away, because it is almost impossible to find anyone using the Pump..I believe alot of it is the cost.
Thanks for being there for us Allison. I am 48, was diagnosed 3 years ago and i think I’ve been a Parky for about 9yrs. I have been on Sinemet for almost 3 years. It was awesome for awhile there. My off episodes are more frequent and longer even though meds were upped in Dec. My scariest times are when the fog in my brain tries to settle in. I really appreciated you videoing your “off” episode. Every time I have the fog I think of you making a meal and giggle. Than I think of the video of you running up the steps. That’s when I want to kick my butt into gear! 🙂 I see a new movement specialist in March (new insurance won’t cover existing specialist- argh). I am praying the visit helps.
Blessings to you.
Alison from Delaware
Alison from Delaware, thank you for your sweet comment. Foggy brain is super scary! But as long as we stay connected, PD doesn’t feel so overwhelming!
Thank you Allison for another interesting option for Parkinson’s. You keep us so well informed. So far
Sinemet has been working for me fairly well after 1 year of use and I pray it continues for some time to come as I just turned 70 and hope I don’t have to seek out other solutions. Again thank you for your blog.
So happy to hear that Sinemet is working well for you. Sending you positive thoughts your way!
HI – This wonderful post, as always, heartens me. I was diagnose 3 1/2 years ago,which means I have had PD probably for about 7-10 years (constipation was the clue, tremor comes later, right?). Anyway, I am wondering what it is like after 20 years? Can anyone give me an idea? Do symptoms just keep on increasing and new ones arrive? Does Sinemet no longer work? Is dyskinesia inevitable? Perhaps these are too many questions, some without east answers. But hearing from two members of the 20+ club triggered my wonderings. Anyone have answers or ideas?
Garrett
Great post! It will be interesting to know how the pump works out. Can’t wait to here more.
I am going to capture a portion of what Dave said, to share with a support group I lead. Well said!! Parkies benefit more than most by chats, blogs, social interaction, because it’s such a unique disease. Name another disease that tells you it’s coming by halting our olfactory senses (smell)?
ps I’ll be a member of the 20-year-club in 4 years, and still doin’ just fine! Will I get a surprise then?
Maybe you will get surprise on your 20-year-club anniversary! I think it’s China for the 20th year… need a new gravy bowl?
I wanted one, but since I get dyskinesias both from high levels of L-dopa and when the effect is wearing off, my neuro recommended a DBS device, that I had implanted in 2010. I have next to no tremors! 🙂
That is great that DBS is working well for you! I got my implanted in 2010 also…. a good year!
Thank you! I will surely do that 🙂
Hi ! 🙂 My husband is due to get the pump on February 16, 2016. It is very difficult to find anyone using the pump. Info on what it is, etc can be found from the manufacturer, but we wanted to talk to someone who has used it. The VA is sponsoring this for my husband . We were able to , thru DUO-CONNECT, talk to someone who used it in clinical trial and liked it so much was allowed to continue going on 5 yrs now. He is very pleased. He , like my husband, has had PD for almost 10 yrs and they are both in the late 60’s. I will keep everyone on here posted as to how it goes, etc. We are a little nervous since he will be the first one to receive the PEG-J needed for the pump, but we are confident that he will get extra attention being first.
Good luck to your husband! It’s exciting to have another treatment option, but I know it can be scary because it’s so new. But look at it this way, Europe has been using it since 2004… so hopefully all the kinks have been worked out! Keep us posted on his progress!
Thanks, Allison! We have had a busy week getting ready for “the day’! Received the pump and meds today in anticipation of next week. WIll keep everyone posted!
Ahhhh! How exciting! I’ve got my fingers crossed!
Hi, I came across this site while looking for carry bag options for the Duodopa Pump. I live in Canberra, Australia.
My story follows.
I was diagnosed with Parkinson’s approx. 22 years ago. I have been using the pump for 2 1/2 years without any problems.
Before going on the pump I was a disaster. The pills were taking an excessive amount of time to work. At times I would take a dose, with no effect. Then it would be time for next dotse and when I took that my earlier dose would kick in and I would end up with a double dose. Dyskinesia would kick in and I would be dancing around like a headless chook (chicken for those in the USA).
I remembe reading the labels on the various bottles of pills I had to take. I think I was supposed to be encouraged when the manufactures listed the side effects and told me they were rare and I was unlikely to suffer them.. not likely. I suffered depression, anxiety and compulsive/obsessive behaviour to name a few.
My first neurologist retired not long after I began seeing him, my second neurologist had cardiac problems and reduced the number of patients he saw. I lost out againo.
Someone recommended a neurologist in Sydney 286 km (177 miles). Approx.a 4 hour drive.
This was the best thing that could happen. The hospital I now go to, as well as being a general hospital, is also a teaching and research medical facility and is staffed with competent and well trained neurologists. This is what you want. You don’t want someone who is learning at your expense.
To me it is critical that you find someone who can prescribe the correct dosage of Duodopa appropriate to the stage of the disease your at and it should consider your specific circumstances.
I started off these comments saying that I was looking for a carry bag for the pump. I have tried most of them. They are either to hot to wear or just plain uncomfortable. There’s a selection of them on Amazon.
John,
Thank you for sharing your amazing story. I know many of us are looking for something to relate to and Duopa pump stories are not that common here in the USA. Is it difficult to have something attached to you all day? What about being intimate with someone? Keep up posted on your progress.