What It’s Like to Use a Subcutaneous Pump for Parkinson’s Disease

Angelica now feels grateful for the privilege of caring for and living with Ivan full-time. “He’s my dad. He’s my best friend,” says Angelica. “Caring for him not only changed our relationship — it’s changed my relationship with myself.”

Not only was this treatment schedule difficult to keep track of — it also limited Ivan’s ability to eat and socialize. Ivan and Angelica’s day-to-day life was dictated by the next dose ... and the one that came after.

And so, the search for alternative treatment options began.

They had previously pinned their hopes on deep brain stimulation, a surgical procedure involving electrodes implanted in the brain. But when Ivan didn’t qualify for the surgery, they turned toward a first-of-its-kind treatment that was still awaiting approval: a continuous subcutaneous infusion pump for Parkinson’s disease.

The pump had been on Ivan and Angelica’s radar for several years, as they tracked its progression through clinical trials. “We knew it was coming and vowed to wait for it,” says Ivan. “I was hopeful [it may help me] feel more normal.”

Getting Ivan on the pump wasn’t as simple as receiving a standard prescription. Because the device requires specialized management, Angelica had to transition her father’s care from his long-term neurologist to a local medical team. This meant building new relationships with providers who would handle the frequent in-person visits and troubleshooting the pump requires in the early weeks.

Then there was the financial hurdle. The initial out-of-pocket costs for the pump were “insane.” Angelica spent a stressful two months waiting for Medicare approval and navigating a mountain of paperwork. When the call came that their insurance approved the treatment, Angelica could finally move forward with getting her dad on the pump.

Still, Angelica had practical questions about the pump that were hard to find in the medical handout — like how easy it would be for Ivan to accidentally overdose himself, how he was supposed to wear it with his dyskinesia, and what the physical and mental adjustments to the pump looked like.

To ease her anxiety and find answers to her questions, Angelica turned to TikTok and Facebook support groups. “I was so desperate for a reality check, because a lot of the videos you watch on these sites are almost like it’s too good to be true,” she says. “It’s another thing to hear it from real people with real problems with real life issues with real schedules.”

When Ivan first started using the pump, setting it up took more than 10 minutes. Now, it takes less than five minutes out of Angelica and Ivan’s nighttime routine. This is partly due to the device’s user-friendly process and interface. “If you look at each step, they all fit together like puzzle pieces,” says Angelica.

Here is the routine Angelica and Ivan have perfected:

Angelica marks where she’ll insert the cannula, a small flexible tube that delivers the medication, with a surgical pen (a tip she learned from someone in her online community). By mapping out the insertion sites for the week on Ivan’s abdomen, she ensures that the sites stay properly spaced, allowing the skin to heal and preventing irritation. The same spot shouldn’t be used again until 12 to 14 days after the last infusion, but Angelica likes to wait at least 20.

Angelica then inserts the cannula into the clean area on Ivan’s abdomen. The device makes a distinct “click” sound that signals a successful placement.

It also took some time to get Ivan’s dosing just right. But finding the right balance with the pump was still better for Ivan and Angelica than fighting with their previous pill schedule. “It’s a tricky equation that we’re trying to solve,” says Angelica. “But we’re not climbing mountains anymore. We’re going over hills.”

While the pump handles the daily delivery of medication, Ivan and Angelica view it as one piece of a much larger puzzle. To keep his brain and body resilient, Ivan dedicates some of his time to physical and cognitive exercises.

Ivan’s physical therapist also comes to their home every week. Together, they work on four specific types of exercises:

1. Aerobic exercises, such as using a recumbent bike to simulate walking
2. Strength exercises, to improve his stability, particularly in his legs and core
3. Stretching, to maintain flexibility and prevent rigidity
4. Balance exercises, to help him feel steadier and prevent falls
   

No longer living by a pill schedule, Ivan and Angelica have a new sense of freedom. Together, the father-daughter duo walk down the San Diego coastline, go to the mall, and eat at some of the same restaurants that Ivan has enjoyed for more than 30 years. And they can do it all without worrying when Ivan’s next dose needs to be administered.

“It was very anxiety-provoking to take him out and then figure out what we’re going to do with the medication,” she says. “Now, we can just walk out the door.”

More than just a medical device, the pump acts as a safety net that allows Ivan to participate in his own life again. “It’s my blankie,” he says. “It’s comforting for me to have it.”

Angelica has also made modifications to their home and Ivan’s wardrobe that help him be even more independent, such as using buckleless belts, magnetic-button shirts, and “step-in” shoes that eliminate the need for laces. “I’m still there to help, but I want him to be able to help himself as long as possible,” says Angelica.

Now that the two have settled into a new treatment routine, Angelica and Ivan are focused on a new mission: becoming the authentic resource they so desperately sought at the start of their journey.

Angelica began documenting their daily life on TikTok (@angie.gaia), sharing everything from how to set up the pump to silly videos of her and Ivan sharing some ice cream in the car.

By sharing her and her dad’s stories, Angelica is doing more than just celebrating their own successes. She is providing a roadmap for others still navigating the condition and showing that a new type of independence is possible while living with Parkinson’s disease.

“It’s a whole new world,” Ivan says.