Convenience should be a priority, not a luxury, in Parkinson’s care
As a care partner and spouse of a person with Parkinson’s disease, I know that flexibility is key to ensuring we follow a routine that works for my husband Eric’s needs. Over the past 12 years, we’ve had to adjust our schedules to accommodate his neurology, physical, occupational, and speech therapy appointments, as well as medication intake.
We live in Raleigh, North Carolina, and his neurological appointments are at UNC in Chapel Hill. Getting ready, driving 30 to 45 minutes to the appointment, checking in at the clinic, waiting for the provider, having the appointment, and then driving home afterward takes at least half a day.
A Parkinson’s treatment schedule requires taking medications at specific times. Without exact timing, people living with Parkinson’s, like Eric, experience off-times, increased symptoms, stress, and anxiety.
Until recently, we were beholden to a rigid routine where Eric took 26 Parkinson’s pills per day in three-hour increments around the clock. Yes, that includes at midnight, 3 a.m., and 6 a.m. We also managed his other Parkinson’s treatments.
How new treatment options simplified Eric’s routine
Convenience in Parkinson’s care is often an oxymoron and rarely comes easily. Although researchers, pharmaceutical companies, device manufacturers, and healthcare providers work tirelessly on new options, science has not yet found a cure for this neurodegenerative disease. Therefore, patients and care partners must take an active role in making daily care more manageable and convenient.
To reduce Parkinson’s care friction in daily life, I recommend exploring new devices and technology options and remaining open to evolving treatment methods.
Two years ago, Eric underwent deep brain stimulation (DBS) surgery. Surgeons placed wire leads in his brain, routed them down his neck, and connected them to a rechargeable battery pack that lives just under the skin on his chest, below his shoulder.
At that time, he was able to eliminate two of his medications. DBS helps immensely with Eric’s stiffness and rigidity. He charges the battery weekly with a device that hangs around his neck and is placed atop the battery.
In April of this year, Eric qualified for a new liquid form of carbidopa-levodopa, the primary medication for Parkinson’s. This medication delivery system has been life-changing for Eric and for me. It delivers the medication continuously through a pump that houses a syringe and then is attached to a cannula inserted subcutaneously in his stomach, simplifying his overall schedule.
This new delivery system offers convenience, but more importantly, it improves how Eric feels each day. Eric has eliminated more than 9,490 pills a year. It has stabilized his on-times and improved his daily functioning.
Providers, pharmaceutical developers, and device manufacturers strive to reduce off-times when medications and devices stop managing Parkinson’s symptoms. On-times ensure the best possible outcomes for people living with Parkinson’s in their daily functioning.
Eric no longer experiences the roller coaster effects of oral pills. We no longer wait 45 minutes for pills to kick in, only to watch the relief fade after a few hours into a sudden off-period with severe functional disruptions and debilitating movement issues.
Here’s how Eric’s routine has changed:
Scroll horizontally to view all columns -->
| Before | Now | |
|---|---|---|
| Oral medication | 26 pills a day, every three hours, including midnight, 3 a.m., and 6 a.m. | Continuous delivery by pump, with a syringe change every 14 to 15 hours |
| Other treatments | A daily skin patch and an inhalant used up to five times a day for off-times | Both eliminated |
| Symptom control | A 45-minute wait for pills to work, a few hours of relief, then a sudden off-period | More stable on-times and better daily functioning |
Simpler isn’t the same as easy: Living with trade-offs
With this medication delivery, we now have a new prescribed regimen. We must change the syringe in the pump every 14 to 15 hours, which still requires planning activities around that schedule, even in the middle of the night.
The liquid medication requires refrigeration and must be warmed to room temperature for 30 minutes before transfer into the pump syringe. While the vial can remain at room temperature for several hours, we must use it within a specific time frame.
Eric gets notifications two hours before the syringe in the pump empties, and then at regular intervals until it’s time to replace it. So, depending on where we’re going and what we’re doing, I must pack medical supplies and coordinate where and when we will make the swap.
As with any medication, patients and care partners must manage side effects and adapt to the physical demands of this delivery method.
The pump is awkward. It’s longer and thicker than three large mobile phones and weighs a couple of pounds. It is housed in a zippered case and must be worn on a strap, belt, or inside a vest with pockets under a shirt. Because the syringe tubing extends less than two feet to his stomach, Eric is tethered to the device, making bathroom visits cumbersome.
The cannula, which must be moved across his stomach, causes irritation. When showering, Eric must turn off the pump, disconnect the tubing from the cannula that is connected to the syringe inside the pump, cap it, and cap the cannula on his stomach.
He can remain off medication for up to an hour, yet even a brief shower feels challenging when his body goes without medication.
He wears the pump when he participates in Rock Steady Boxing for Parkinson’s three times a week, but he has to adjust some activities to accommodate the device.
Traveling with Parkinson’s takes extra planning
Traveling with Parkinson’s also presents many challenges. It requires planning all doses for the entire trip, carefully packing medications (especially those requiring refrigeration), the DBS charging device and remote, the pump battery charger, and supplies for medication preparation and delivery.
Because Parkinson’s affects mobility, we bring Eric’s walking sticks and all-terrain rollator everywhere, packing the car so we can reach them quickly.
If we’re traveling by plane, I have to research, plan, and schedule gate-check options so the rollator doesn’t get damaged in flight and is available immediately after we deplane. During flights, I keep necessary medications and supplies within easy reach.
Here are some things I’ve learned that will help your air travel go more smoothly.
- Swallow your pride: Use personal assistance and wheelchairs or wheeled transport to reduce stress, navigate busy airport terminals, and make gate-to-gate travel easier.
- Apply for TSA PreCheck and Global Entry: These programs allow for easier check-in and navigation through security lines.
- Plan for different time zones: Even a one-hour difference can throw off dosing routines, meal planning, and symptom management.
Advocating for treatments and care plans
Simplifying Parkinson’s routines requires you and your care partner to advocate continually for options that fit your daily reality.
Not all prescribing doctors recognize the hidden strain of complex dosing schedules, so you must explain your day-to-day challenges clearly.
Similarly, device developers do not always understand how equipment impacts eating, sleeping, and social activities, making your direct feedback invaluable.
Ways to streamline your Parkinson’s routine
Consider these practical tips to lighten your care burden:
Scroll horizontally to view all columns -->
| Area | What to do |
|---|---|
| Appointments | Schedule morning appointments to coincide with medication intake and optimal functioning. When available, choose virtual or video appointments instead of in-person visits. |
| Medications | Synchronize prescription refill dates. Discuss dosing options with prescribers and pharmacists, and ask about alternative medications and simplified treatments. |
| Tracking | Log doses for a week, noting missed ones and what happened. Track challenges, frustrations, real-life scenarios, and side effects. |
| Talking with your care team | Share challenges, delivery-method obstacles, and all side effects with your healthcare providers. |
Essential next steps
Start or maintain a conversation with your care providers. Talk openly and honestly with them about your Parkinson’s treatment options:
- Ask about new medications, treatments, and devices to learn if they will work for you.
- Modify your care plan as Parkinson’s symptoms change and the disease progresses.
- Advocate for the best care and treatment methods. Care partners, your person with Parkinson’s may need you to take the lead.
- Pick one frustration or challenge and raise it with your health team at your next appointment, and give feedback to device and treatment manufacturers.
Parkinson's News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
