Duopa does not cure apathy. Getting involved does.

Hello and apologies for abandoning you. While there have been events happening, I have been in the doldrums of apathy, numbing my mind with senseless computer video games.

As it turns out, Duopa is not a cure. In fact, it is the same medicine I’ve been on since 2010, albeit delivered in a less sporadic way to my brain. Oh, and it is more easily fine-tuned and adjusted. I’m grateful for that.

While I’ve been anesthetizing my mind, a Facebook friend whose mother suffers from PD has been fighting the good fight. She took on Abbvie, Medicare, and Medicaid and won!

Based in part on me sharing my experience, Sherrie’s mother began using the Duopa gel and pump in January. She had some complications and spent several weeks in the hospital. She did much better on the Duopa than on regular carbidopa/levodopa yet required skilled nursing care rather than her usual care at home. Transfer from a hospital to a nursing home is not usually a big deal. The Duopa became a huge issue because the pump that delivers it is considered an infusion pump by the FDA, even though it is not one in the same way that an insulin infusion pump or a morphine infusion pump is.

Sherrie finally found a skilled nursing facility that would accept her mom and discovered another huge hurdle. The process of FDA approval did nothing to determine which letter of the Medicare alphabet soup would be responsible for paying for the expensive Duopa cassettes when a patient was not able to live at home.  For a short time, the pharmacy that was providing the gel cassettes refused to send any more until the billing was figured out, and Sherrie’s mom had to go back on oral carbidopa/levodopa.

Sherrie persevered, calling Abbvie, the DuoConnect case manager and folks higher-up, and several Medicare representatives until the problem was resolved. At last report, Sherrie’s mom’s Duopa will now be paid for by Medicare Part D while she is in the skilled nursing facility. All that will come out of her mom’s cash flow is the price of the syringe adapters. Though that is still one-third of her mom’s monthly cash allowance, Sherrie considers it a very small price to pay for peace of mind and her mother’s quality of life.

My thanks to Sherrie Mercurio for allowing me to share this important information with you.

 

 

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The five-year mark and Limp-Noodle Neck

You may have heard that after approximately five years of levodopa therapy, dosing and timing of doses becomes a little trickier. Some professionals say that at the five-year mark, you begin to experience more side effects from levodopa. Dyskinesia is a common side effect. Wearing-off at odd times is another. My head bobs more, my feet move when I’m sitting or resting without my permission or even my awareness at times. Prior to getting the continuous dose of Duopa, I could no longer predict my wearing-off episodes. As I learned with the levodopa-induced dystonia, now the medication is causing some of the same symptoms it used to relieve.

I had my first Sinemet (carbidopa/levodopa) trial in October 2010. I tried a couple of agonists with immediate negative results, so I have been solely on levodopa with the exception of a few weeks in early 2011 since that time. I started with three 25/100 tablets a day and by September of 2015 was up to a 25/100 dissolvable tab every 2.5 hours for a total of seven per day. I also took a carb/levo extended tab at night.

It was purely coincidence that I began using the Duopa five years after beginning levodopa therapy. Perhaps that made fine-tuning the amount going through the pump a little more difficult than it might have been if the gel and device had been approved by the FDA a year sooner or even a year later.

At my appointment on February 8, my MDS chose not to increase the flow of the Duopa gel, even though I had less energy. My neck showed no stiffness at all. Quite the opposite, in fact. The Botox injections worked a little too well. I now had trouble holding my head upright. On the form I fill out at each visit, I list the top three issues I want the doctor to address. My #1 that day read “Limp-noodle neck”. I’m sure there is an appropriate medical term for it, but that is exactly what it felt like to me. I kept having to push my forehead up with my hand so I could take a bite of food or wipe my mouth after brushing my teeth. I was spending most of my day in my recliner with the back reclined enough to support my neck but not so much that I couldn’t use my phone or read a book. I found myself exhausted from trying to hold my head up for more than 10 or 15 minutes at a time.

My MDS said that next time (What?! I never want to do this again!) he would decrease the dose by 10 to 20%. This type of best-guesstimate dosing is part of the art of medicine. There is no way to know what is best until you try it. The doctor recommended I purchase a cervical collar at a drugstore for when I’m away from home because, he said, “The Botox will reach its full effectiveness at about six to eight weeks.”

My caregiver took me to Walgreen’s on the way home, where I bought the only cervical collar in stock. It came in a red box that stated, “One size fits most.”  I am evidently not in the “most” category. With some effort, we tightened it so that it wouldn’t fall off if I bent over and fastened it with the Velcro closure ending nearly under my ear instead of at the back where it might be on most folks.

I haven’t let all this slow me down too much. I’ve been out to movies, restaurants, church and grocery shopping with my new fashion accessory. Oh, and to physical therapy, where I have to learn exercises to keep my limp-noodle neck in shape for when the Botox wears off…in April.

 

 

 

 

 

Posted in Complications after long-term levodopa use, Duopa gel infusion, Levodopa-induced dystonia and dyskinesia | Leave a comment

We interrupt the regularly scheduled blog post for this urgent announcement

I planned to tell this story in a tidy, chronological format. Parkinson’s Disease is decidedly untidy and can interrupt plans in unexpected ways at inopportune times. Allow me to explain.

My last post was delayed by the flu. It could happen to any blogger, right? Even one who had her annual flu shot.

Five days after my last post, I developed a very stiff neck that would not allow me to turn my head to the right. I spent Friday, Saturday, and Sunday with my chin tucked neatly into my left shoulder.

Luckily, on Monday, January 18th, I had an appointment with my Rehab Psychologist at the Parkinson’s Center. I told the receptionist about my neck and she made sure I saw the nurse for my MDS. She saw the severity of the dystonia and had me see the doctor.

The MDS said I had levodopa-induced dystonia. He turned the continuous Duopa dose down by .3 ml and arranged for me to return at the end of the week for several Botox injections in my neck. He had been planning to use it for my curling toes on Friday the 22nd anyway. He asked his assistant to add more injections to the authorization request. He ordered PT for my neck as well.

As my caregiver was wheeling me out, the assistant told us that while Botox injections must be pre-authorized by Medicare for feet, in urgent cases pre-authorization is not required. By that time, the doctor was with another patient, so I had to wait for the Friday appointment. It was a fairly miserable week.

I arrived Friday morning with both severe dystonia and dyskinesia, both levodopa-induced. I had six Botox injections in my neck, four in my left calf, one in my left foot, and one in my right calf. By far, the most painful shot was the one in the bottom of my foot. I was told that if it was going to work, it would take 7-10 days. In addition,  my morning dose of Duopa was reduced from 8 ml to 6 ml because of the dyskinesia.

I endured another rough week. On the seventh day, my neck began to loosen. My dyskinesia disappeared, along with my energy. I continued my PT exercises and slept much of the time.

I will see my MDS again on Monday, February 8th. I’m grateful to have some relief from both the dystonia and the dyskinesia. I would like to try incremental increases to my morning dose. I will discuss this with my doctor next week.

Next time: Five years into levodopa therapy, things change.

 

 

Posted in Duopa gel infusion, Duopa Pump, Dyskinesia, Levodopa-induced dystonia and dyskinesia | Leave a comment

Duopa infusion–Day One

I took my final oral carbidopa/levodopa 25/100 oral dissolving tablet at 9:30 PM on Monday, November 16, 2015. My appointment to begin using the Duopa gel was scheduled for 8:45 AM Tuesday.

My caregiver arrived at 7 AM on D-for Duopa Tuesday. I took my morning meds, had breakfast, and she helped me get dressed. I always am slow and a little stiff when I get up. Without dopamine, I lose ground quickly. By the time we left at 8 AM, I could not get into the car unaided. My Parkinson’s mask created a lopsided look to my face that my caregiver referred to as “scary”. My speech became slow and slurred. My tongue felt thick.

Traffic was a nightmare. The ride typically takes 30 minutes; that day, it took over an hour. There was a huge wind and rain storm in the greater Seattle area that morning and even the side streets had bumper to bumper traffic.

Our late arrival didn’t mess with the MDS’s schedule. A lot of people simply stayed home that day. A nurse from Abbvie, who had arrived from Alabama that morning was waiting for me when I arrived, along with the Parkinson’s clinic nurse who had attended my PEG-J tube placement. They asked a series of questions that I could barely answer. Then my MDS came in and did an exam before we could start the infusion.  I was more ‘off” than I’d been in years.

Finally, the Abbvie nurse and my doctor checked the preprogrammed settings on my pump, and both nurses instructed my caregiver and me in hooking the cartridge onto the pump and connecting it to the tubing. The Duopa nurse showed us how to turn on the pump and I started my morning dose at 10 AM.

The morning dose for me is 8 ml. It goes in over a period of about 15 minutes. The tube inside my body is so long that the Duopa gel doesn’t even reach my small intestine until 4 ml trickles in, 1/10th of a ml approximately every two or three seconds. The return to an “on” state is gradual rather than instantaneous.

The MDS returned after 30 minutes, then again after 1.5 hours. The appointment lasted a total of six hours, with occasional visits from the doctor to check my symptoms. I treated my caregiver to lunch at the only restaurant we could find that had power. We got our order just before their electricity failed again. The wind storm was still wreaking havoc.

We returned to the clinic at 1:30 PM. The pump was working correctly. My continuous rate was pre-set at 2.5 ml. With the Duopa pump, once I was “on”, I stayed “on”. The MDS checked on me from time to time. Finally, just before 3 PM, we were sent home an hour earlier than planned because the clinic had lost power. Even with generators, there was a chance the elevators would stop working, and we would be stranded on the third floor.

We scheduled an early appointment for the following morning and made our way home through traffic that was still heavy. Later that evening, I had one last visit from the Duopa nurse who had been coming to my home before surgery. This time, I was taught how to stop the pump and disconnect it for the day.

I slept very well that night.

 

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The first 72 hours

I woke up in the recovery room about two hours after the procedure started. The staff and Arnie told me everything went well. I hurt quite a bit and was given some IV Dilaudid. I was told I had to wait for a room to become available on a patient floor. I took a carb/levo tab and simply tried to sleep.

Around 8 PM, I was wheeled up to the 6th floor. The staff is quite adept at transferring patients from stretchers to beds with as little pain as possible. I took a peek under my gown, but all I could see was a big dressing. I could feel the PEG-J tube. It felt like someone had pounded a sharp spike into my abdomen.

For the next 12 hours, I had pain medicine followed by fitful sleep on a 2-hour schedule. I’m very glad the doctor had me spend the night in the hospital. It would have been very difficult at home.

I was discharged around 10 AM Friday by a different gastroenterologist. There was a SNAFU about my pain medicine for home. It had to be a liquid. Two hours of running back and forth between the GI office and the hospital pharmacy got me enough medicine for the weekend. Then we had to do it all again on Monday.

I wasn’t good for much over the weekend. I had an agency caregiver in the mornings and Arnie took care of me in the afternoons and evenings. The Duopa nurse came to my place Saturday morning to train the agency and volunteer caregivers on how to set up the pump. It was still only make-believe, however. I would not begin infusing the Duopa gel until Tuesday.

By Monday, my caregiver was able to remove the large dressing and clean around the PEG-J tube. The tube site looked good. I was still in pain, but it was adequately controlled with oral medication. By Monday evening, I was ready to move ahead with my Duopa adventure.

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Surgery

The evening before surgery and the morning of, I was required to shower my entire body with Phisoderm soap. Showers tire me. It helped to remember that I would be getting a hefty nap by afternoon. I could have nothing by mouth after midnight except small sips of water with my dissolvable carbidopa/levodopa at 7 AM, 9:30 AM and 12 PM. I had to be at the hospital by 1 PM;  the procedure was scheduled for 2:30 PM
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Upon arrival, I met the nurse who would also be with me in the recovery room. I was weighed, measured, questioned, disrobed and re-robed in a one-size-fits-few hospital gown. My IV went in successfully on the second try. Then I was questioned again by the anesthesiologist and gastroenterologist. All consents were signed.  After one last trip to the ladies room, I was ready. By 2:35 PM, they were wheeling me into the procedure room and putting happy juice in my IV.

While implanting a PEG or PEG-J tube is usually an in-and-out procedure with sedation rather than general anesthesia, my gastroenterologist planned beforehand for me to be completely under. His staff let me know that I would spend one night in the hospital. I arrived prepared with my electric toothbrush and my Aware in Care kit (available free from the NPF website (www.parkinson.org) for any Parkinson’s patient to use when hospitalized). I always give the list of safe and unsafe meds for Parkies that comes with the kit to the admitting nurse, the surgeon, and the anesthesiologist. Fortunately, my gastroenterologist had done all of the PEG-J tube implants on the Duopa study candidates. He knew what he was doing. The anesthesiologist took the list from me and merely nodded.

Also involved in the procedure was an interventional radiologist. He checked that tube worked properly and was positioned correctly once the gastroenterologist placed it. My MDS’s nurse was there, as well as a nurse who had worked with the folks who began their Duopa journey under the study.
The reason for so many professionals, you ask? I was the first patient in the greater Seattle area to receive the Duopa Gel Pump system since its FDA approval in January. Everyone wanted this to go smoothly. Which it did.
Posted in PEG-J tube, Uncategorized | 1 Comment

Welcome to La Vida Duopa

I’ve been living La Vida Duopa since November 17, 2015. Many have asked me to document my journey.

I was first introduced to the idea of the Duopa pump in September 2012. My Movement Disorders Specialist (MDS) said I would be a perfect study candidate as DBS (Deep Brain Stimulation) was not an option for me. I was excited.

My excitement turned to disappointment after a medication transcription error caused a severe levodopa overdose and six weeks of mania. The manic episode led to a psychiatric hospitalization. Because of the strict study criteria, I was told the hospitalization had disqualified me for the trial.

Fast forward (or crawl slowly) to January 2015. The study of the Duopa pump was successfully completed and the Duopa Pump and gel were approved by the FDA. Hooray!

I called my new MDS as soon as I heard the news. His nurse called me back and said, “Hold on. We have to get the billing codes set up.” That was completed in late Spring. At my July appointment, I was told that the staff all had to be trained on the protocol. It was grin and bear it time.

In September, I met the gastroenterologist. He said he was willing to put in the PEG-J tube that is necessary to deliver the gel.  Finally, in mid-October, I met with my MDS to discuss the actual benefits and drawbacks of treatment with Duopa. I was up to seven 25/100 dissolvable carbidopa/levodopa tablets each day. Often the medication didn’t last long enough for a dose every 2.5 hours. I spent a lot of each day in an off state, or wearing off,  or waiting for the meds to kick in. I had difficulty making any commitments for fear my meds would not be sufficient. I was more than ready to get on with it.

All my information had to be submitted to the pump manufacturer and the pharmacy who would provide the medication for the pump. My insurance coverage was examined. I was found to have excellent coverage. That’s good, because I surely  ould not afford $70K a year for it!

Finally, the PEG-J tube surgery date was set for November 14, 2015. My support team was put in place. In addition to my gastroenterologist, my MDS and his nurse, there was a nurse from the Duopa manufacturer, a visiting nurse who would come to my home to train my caregivers in the use of the pump, the gel cassettes and the PEG-J tube, and the opportunity to talk with other patients who had been  receiving the Duopa treatment.

By November 13, I had all the equipment and instructions and training completed. I had listened to the recording “Important things to know about treatment with Duopa gel” a dozen times.

 

Next time: The surgery

 

 

Posted in Duopa Pump, New treatments for Parkinson's Disease | Tagged | 4 Comments