Paul Video - Transcript

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REAL PEOPLE

REAL STORIES

TEXT ON-SCREEN and narrator:

Please watch Important Safety Information throughout and at the end of this video.

These are real people who, along with their doctor’s advice, decided to choose Duopa (carbidopa and levodopa). They have volunteered to share their story with you. Individual experiences may vary; these are their stories, in their own words.

Only you and your healthcare provider will determine if Duopa could be right for you.

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PAUL

Paul voiceover:

I’m Paul. I’m a father, grandfather, husband, and brother. And I have Parkinson’s disease.

Paul:

From the time I got the first symptom, until I saw the doctor was at least 6 months, maybe 9 months. I brushed it off, oh, it’s nothing. Oh, people do that all the time. And I thought of every excuse I could. This is denial, actually. And I thought I should see a doctor and he examined me, went over my history in great detail, and finally pulled his head back a little bit and said, “Well, if you ask me, I think it’s Parkinson’s disease.”

Paul voiceover:

The next couple months after my initial visit... I was really shuffling my feet.

Paul:

I’d make every excuse I could think of. New shoes. The carpeting just got cleaned. I’d make every — all kinds of foolish excuses.

And I had to go back to my doctor and said, “Shall we start treating something?”

I figured I should tell my family pretty soon. I’m rather sure this is the diagnosis. And how and when should I do that?

So I said, “I want you all to know that I have a significant problem, a mild significant problem. It’s going to bother me — it doesn’t bother me at all now. It might bother me in a few years. And it’s a family kind of disease. That once one person in the family gets it, the whole family has that disease.”

Paul voiceover:

I was getting by....with increasing symptoms...I told my doctor what symptoms had progressed....

Paul:

And I took a lot of medicine. I couldn’t count how many pills a day.

If I cut back on my pills, I’d just get rigid and stiff and couldn’t walk at all.

So I was looking for some kind of answer for something to help...

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DUOPA (carbidopa and levodopa) enteral suspension is a prescription medicine used for treatment of advanced Parkinson’s disease. DUOPA contains two medicines: carbidopa and levodopa.

Paul voiceover:

...and heard of a medicine that might be of benefit. It’s called Duopa.....

Paul:

The first night after the surgery I didn’t really feel much because I was kind of anesthetized and disoriented and stuff. So I just lay in bed and did what they said to do. Next morning, I got hooked up, the medicine was flowing.

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A procedure is required to make a small hole (“stoma”) in your stomach to place a percutaneous endoscopic gastrostomy with jejunal tube (PEG-J). Duopa is delivered continuously into your small intestine by a pump for up to 16 hours a day.

Paul:

The doctor was there at 8 am - punctually checked me, checked everything.

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Stomach or intestine problems and problems from the PEG-J procedure may occur. Some of these problems may require surgery and may lead to death. Notify your healthcare provider if you experience stomach pain, persistent constipation, nausea, vomiting, fever, bloody or dark stool.

Paul:

Then they showed me how the pump worked, a lot of buttons and numbers and stuff and I’m ready to go.

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Before the stoma procedure, tell your doctor if you have ever had a surgery or problems with your stomach and talk to your doctor about how to care for your stoma and check for signs of infection.

Paul:

I have a typical day which I can describe as follows.

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Do not take DUOPA if you currently take or have recently taken (within 2 weeks) a medication for depression called a non-selective monoamine oxidase (MAO) inhibitor.

Paul:

As I wake up each morning — the rules are I have to disconnect every night, which I do. And then I reconnect every morning, at about 6 am. That’s my regular routine.

The medicine has to be refrigerated. So I keep it in a nearby refrigerator.

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Tell your healthcare provider about all the medicines, vitamins, and supplements you take. Using DUOPA with certain medicines may cause serious side effects. High-protein foods may affect how DUOPA works.

Paul voiceover:

The medicine is in a cassette that gets attached to my pump...

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Duopa should be kept refrigerated until ready to use. Before using a cassette, let it sit at room temperature for 20 minutes.

Serious side effects can occur. Tell your doctor right away if you experience: falling asleep during normal daily activities without warning; low blood pressure when you stand or sit up quickly; seeing, hearing, or feeling things that are not real; unusual urges or compulsive behavior;   (continued)

Paul voiceover:

...which I then connect to my tube.

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Serious side effects can occur: depression and thoughts of suicide; uncontrolled sudden movements (dyskinesia), which may be a sign that your DUOPA may need to be adjusted; progressive weakness, numbness, or loss of sensation in the fingers or feet;   (continued)

Paul voiceover:

Each night at about 10:00, I disconnect the pump from the tube...

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Serious side effects can occur: heart attack or other heart problems including increased blood pressure, fast/irregular heartbeat, or chest pain; Parkinson’s disease patients are at increased risk of melanoma (skin cancer); changes in certain blood tests including certain hormone and kidney tests; worsening of the increased pressure in your eyes (glaucoma).

Paul voiceover:

...flush the tube with some water, and then remove the cassette...

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Do not stop using DUOPA or change your dose unless you are told to do so by your healthcare provider. Tell your healthcare provider if you develop withdrawal symptoms such as fever, confusion, or severe muscle stiffness.

Paul voiceover:

...from the pump, discard the cassette and the pump is ready for the next morning.

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You should take your nighttime dose of oral carbidopa-levodopa or other Parkinson’s disease medications as prescribed.

Paul:

The inventors of this medicine put in an extra dose, which I’m allowed to take at 2-hour intervals.

When I dip down into a valley, I’m sluggish and droopy and can’t carry out any task.

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Duopa can cause uncontrolled sudden movements (dyskinesia). If you have new dyskinesia or your dyskinesia gets worse, tell your healthcare provider.

Paul voiceover:

So I have to be careful how I use the extra dose and I report them into my doctor — not every day but...

Paul:

...every 6 weeks, how much you’re using your extra dose.

Paul voiceover:

So we have an ongoing dialogue.

Since starting Duopa, I’ve experienced less off time. But I’m still short...

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The most common side effects of DUOPA include: complications of tubing placement procedure, swelling of legs and feet, nausea, high blood pressure (hypertension), depression, and mouth and throat pain.

Paul voiceover:

...on some things I can’t do.

There are a few favorite activities I’ve picked up, things I can handle easily, so that is where I focus my attention.

My physical therapy program keeps me physically active because otherwise I sit in a chair and just watch the world go by.

Paul:

But my physical therapist and other people around me are encouraging me to get up and go around and do things. They’re right. I should. And I do.

Support of the family is hugely important. Doctors are important, nurses — all those people are important. But family support is hugely important in this particular disease.

Paul voiceover:

I can enjoy time with my family.

My wife, of course, is living here with me. For 51 years we’ve been together.

Paul:

And time with Joan is very valuable to me and we enjoy a lovely life together.

Paul voiceover:

Our son and daughter are terrific kids – we have a real good time with them.

Paul:

I’m glad that I have Duopa, it was the right drug for me. I’ve been so lucky to have this because it came at a time in my life when I really needed it.

TEXT ON-SCREEN and narrator:

Please watch the following Important Safety Information for DUOPA.