New treatment gives Nick Kaethler back his life and the will to live

Nick and June Keahler
Nick and June Kaethler

When Nick Kaethler was diagnosed with Parkinson’s disease 18 years ago, he had just retired from his career as a music teacher. “We decided this was not going to change our retirement plans and we would continue to do the things we really wanted to do,” says Nick’s wife June.

They took to the road in their RV and travelled for the next four and a half years. Next, they took a crash course in teaching English as a second language and spent two years teaching English at a university in China.

All this time Nick was managing his Parkinson’s symptoms well with levodopa. Each year he would check in with his doctor and renew his prescription, before heading back on the road or back to China. Returning to Toronto in 2005, Nick’s symptoms became more severe and new symptoms appeared. He underwent speech therapy and added new medications to his levodopa.

By 2015, Nick’s life was severely curtailed by the advanced state of his disease. “It was like a giant was sucking out my life through a straw,” he says. He was taking medication every two hours to maintain very limited activity. “I was basically able to manage one activity – a meeting or choir practice – for about 40 minutes a day.” He also had arthritis and a fall had resulted in a “half hip” replacement.

“I was really going downhill and losing the will to live,” Nick says. “When I woke up in the morning, I just didn’t want to get up and live.”

The couple began to look for other treatment options. Unfortunately, Nick was not a candidate for DBS (deep brain stimulation) surgery. Fortunately, a new method of administering levodopa had just been approved for treating advanced Parkinson’s. Dr. David Grimes, Director of the Parkinson’s disease and movement disorder clinic at the Ottawa Hospital, thought Nick might be a candidate for the new treatment Duodopa – and the first Ottawa patient to receive it, under the care of Dr. Tiago Mestre.

Duodopa is a levodopa and carbidopa combination in the form of a gel that is delivered directly into the small intestine, through a small opening (or stoma) in the abdomen, delivering a more constant supply of medication throughout the day. The gel is packaged in daily “cassettes” of 2000 mg of levodopa and 500 mg of carbidopa, which is connected to a small pump, weighing about two lbs. The pump is located outside of the body and can be carried in a fanny pack, pocket, handbag or shoulder holster.

Duodopa requires an outpatient surgical procedure to create an opening in the abdomen so a tube can be inserted and positioned in the small intestine. This is done by a gastroenterologist. Daily cleaning and care of the external tubing must be done by the patient or a caregiver, who can be a family member. This helps prevent any infection of the opening. The medication dose is adjusted by a physician.

With a background in nursing, June was easily able to clean the tubing, apply dressings and wrap the tube close to the body with a bandage at night to keep it in place. “This care doesn’t require nursing knowledge,” says June; “anyone can do it with training, but I think it would be difficult to do on your own.” Duodopa’s manufacturer also provides a patient support program.

Nick had his day surgery and began Duodopa treatment in March 2015 and hasn’t looked back. “It’s like magic,” he says. “It’s still tough in the mornings, but within 30 minutes of beginning the Duodopa I want to get up and within an hour I’m planning my day. And that means activities in the morning, the afternoon and the evening. Nick is an avid bridge player and has won a regional trophy. He exercises, plays table tennis and sings in a choir.

Nick wears his pump in a fanny pack when he’s out and at home it rests in a vest pocket. He tried a shoulder holster, but it made him more lopsided, since he already has some weakness on one side. He still takes some oral levodopa at night and still deals with some symptoms, usually later in the day. “He goes through the entire cassette each day,” says June, “and has done so since the beginning.” Not all patients require the full 2000 mg of levodopa, so they will not use all the medication in a cassette.

Nick is fortunate that he lives in Ontario and is over 65 years of age. Duodopa is substantially more expensive than oral levodopa and is not covered by most provincial health plans. In 2014, Duodopa was added to the Ontario drug formulary through the exceptional access program (EAP), which has strict criteria and requires a physician’s recommendation. In Quebec, coverage is granted on a case-by-case basis; in Alberta it is covered under short-term access and a small group has coverage in the Yukon. About 80 per cent of private insurers cover Duodopa, but there is often a co-payment required.

Parkinson Canada was instrumental in getting access to the drug coverage for Ontarians. In 2013, we prepared a patient evidence submission for the Ontario Public Drug Program to support access to this new treatment option. We asked the Ontario Parkinson’s community, people with advanced Parkinson’s and their caregivers to provide us with feedback by completing surveys. We also interviewed Dr. Anthony Lang, in Toronto, who had been involved in the clinical trials of the treatment. We will continue to advocate for access to treatment options in other parts of the country.

In addition to financial coverage, not every health centre in the country is equipped to offer the Duodopa treatment option. At the time of publication, there are centres in Edmonton, Calgary, Toronto, Vancouver, Montreal, Kingston and Ottawa offering the treatment. If you are interested in Duodopa, ask your physician or neurologist if the treatment is offered in your area and what coverage is available.
“I hope this treatment becomes more available for more people,” says Nick. “In my case, it’s been a great success.”

For more detailed information about Duodopa, watch our public education webinar on Neupro and Duodopa online. It includes a thorough presentation on this new treatment option.  Visit www.parkinson.ca to learn more about living well with Parkinson’s.

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