"A duodopa pump changed my life."

A Duodopa pump is suitable for a small number of people whose Parkinson’s symptoms can no longer be controlled with more common drug treatments, such as levodopa tablets.

Gio* had a Duodopa pump fitted recently and describes her experience. 

I’d been living with Parkinson’s for more than a decade when I found that treatment with levodopa was no longer working well enough to control my worsening symptoms.

I first heard about the Duodopa pump some 6 years ago from a Parkinson’s nurse, who spoke positively about it. My reaction was, ‘What a rigmarole, no way!’ But as circumstances change, so do perspectives.

I was suffering from severe motor fluctuations that could no longer be controlled by tweaking the timing or dose of medication.

Changing opinions

I was diagnosed with Parkinson’s in 2008, aged 49. I had a demanding job and a young son, as well as an aged mother to care for. I continued to work for as long as it was responsible to do so, adapting my work life as much as possible to meet the challenges of Parkinson’s.

Nine years later, I was suffering from severe motor fluctuations caused by too much or too little levodopa that could no longer be controlled by tweaking the timing or dose of medication.

At one extreme, when levodopa was wearing off, I was freezing and had a real sense of ‘shutting down’. At the other extreme, I experienced such severe dyskinesia (involuntary movements) that I was walking into walls, causing embarrassment to those I was with and stares from strangers. 

Sometimes, the violence of the rolling movement would cause vomiting. My experiences of being unable to leave a cinema at the end of a movie, get up after a meal or get through a railway ticket barrier became so common and stressful that I no longer had the confidence to go out. Getting to the loo became a serious issue, even at home. My driving licence had also been revoked.

In short, I seemed to be hurtling towards a more advanced stage of Parkinson’s. Soon, my ‘No way!’ had changed to, ‘Well, maybe’.  

Of course, everyone’s experience will be different, but hearing other patients’ experiences of the treatment makes the decision whether to proceed with a pump much easier. 

Making the decision

Deciding whether to proceed was difficult. I looked at research studies involving patients with Parkinson’s who had had the treatment to see what side effects they had experienced. I was concerned about how well the treatment would work and what life with the pump would be like.

The doctors and nurses who did my assessment were patient and informative, but I felt I needed to speak to someone with personal experience of the treatment. 

The Parkinson’s nurse at the hospital put me in touch with someone who’d had the procedure 3 years earlier. She provided an invaluable perspective. Of course, everyone’s experience will be different, but hearing other patients’ experiences of the treatment makes the decision whether to proceed with a pump much easier. 

I now go out to meet friends, I have been to the theatre, and I have travelled long distances as a passenger by car and train without fear of freezing or getting stuck.
 

A dramatic improvement

Truthfully, the procedure to insert the tube into my intestine was unpleasant. But once the dose had been adjusted, freezing during the day became almost a thing of the past. If I do freeze, there is an ‘extra dose’ button which usually works within minutes. 

I now go out to meet friends, I have been to the theatre, and I have travelled long distances as a passenger by car and train without fear of freezing, getting stuck or causing embarrassment.

I quickly learned to use and maintain the pump by myself and the follow-up care after discharge from hospital was fantastic.

People I have not seen since before the treatment started have said how well I am looking, and I even got my driving licence back. In short, my quality of life has improved dramatically.

For me, the decision to proceed down the Duodopa pump path was absolutely the right one.

Weighing up the pros and cons

I do still get dyskinesia, in spite of the wonderful nurses’ best attempts to adjust the dose – although so far it has not caused vomiting. The stoma site, where the tube goes in above my belly button, is sometimes often uncomfortable. Fatigue and lack of stamina remain a problem, along with some other non-motor issues. 

If you are considering this treatment, you will need to balance on the one hand, having surgery, having to flush out tubes and keep the stoma clean, travelling with the gel cassettes in a cool boxes, the wardrobe of clothes that can no longer be worn and perhaps body image issues, with, on the other hand, the life-enhancing effect of being able to get out and about.

For me, the decision to proceed down the Duodopa pump path was absolutely the right one. I’ll always be grateful to my medical team and fellow patient for their time and advice in helping me make it.

*Name changed to protect privacy.

Parkinson’s nurse Alison Leake explains more about a Duodopa pump.

Duodopa is a gel form of levodopa. It is only suitable for a small number of people whose symptoms can’t be controlled with more common drug treatments, such as levodopa tablets.

Duodopa is delivered through a tube that is surgically inserted into the intestine. The treatment starts in hospital with the support of a specialist team. Once the pump is fitted, you will need to carry it and the medication around in a crossbody bag.

Parkinson’s symptoms that would normally respond to treatment with levodopa tablets, such as slow movement and muscle stiffness, are likely to improve after the pump is fitted. 

There is less focus on the timings of medication, fewer motor fluctuations and an overall improved quality of life.

There can be complications with the pump, the tube can become blocked or dislodged, or need replacing. There is also a small chance of infection at the site of the tube. 

The pump also requires adapting to a new treatment and daily routine, setting up and stopping the treatment. But most people who have the pump fitted cope well and find the benefits outweigh the negatives.