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How to Work Together to Manage Your Spouse’s Parkinson’s Treatment

David and Linda were compensated by Neurocrine Biosciences to share their story.

Being a giving person is nothing out of the ordinary for Linda; caring for others has always been ingrained in her life.

She started her career in education, teaching high school students everything from physics, to biology, to chemistry, and mathematics. If a student needed help with an assignment, Linda was there to guide them through it.

As a teacher, a wife, a mother—and now a grandmother, too—Linda has amassed decades of experience in practicing patience. And making sacrifices. And providing compassion.

Now retired, Linda has found another role that requires a focus on those assets: helping care for her husband, David, who was diagnosed with Parkinson’s disease (PD) almost 5 years ago.

Between Linda’s skills as an educator and her love and devotion for her husband, she has made an excellent care partner and advocate.

“I like to try to make it easier,” she explains. “That’s my whole purpose—to take something hard and make it easier.”

That’s exactly what she’s done for David.

Responding to diagnosis and early treatment

As the millions of people across the globe lending care to a loved one with a chronic condition can attest, there is no manual for providing support following a serious diagnosis.

When David was diagnosed with PD, Linda had her own strategy in mind: she immediately went into research mode. She sought out to learn more about the disease and to find potential treatments.

She then moved along to figuring out the various “life hacks” that could help David with his daily activities—everything from reapproaching how to handle the remote to using the microwave.

With a good amount of variability to David’s day-to-day and treatments over the first years post-diagnosis, Linda had to adapt quickly to become the best care partner for David she could.

How David’s treatment advances have changed life for Linda

When David first started experiencing OFF time episodes his doctor switched him to a different formulation of levodopa and carbidopa. However, David was still experiencing OFF time. At that point, his doctor prescribed ONGENTYS® (opicapone) capsules. ONGENTYS® (opicapone) capsules is a once-daily prescription medicine used with levodopa and carbidopa in people with Parkinson’s disease (PD) who are having “OFF” episodes. The most common side effects of ONGENTYS include uncontrolled sudden movements (dyskinesia), constipation, increase in an enzyme called blood creatine kinase, low blood pressure, and weight loss.

Please see Full Safety Information below

Linda recognized David exhibiting fewer OFF time symptoms throughout the day. This was a huge realization for them because she watched him regain some of his independence.

“Well, it’s just been a lot easier,” she reports. “He can do more things, and he has more independence, which is always good for a person to have.”

Since starting treatment with ONGENTYS, David’s OFF time has decreased. While there are still certain things that Linda helps him with, David has fewer symptoms that impact his daily routine.  

In the retired couple’s Idaho home, David enjoys making sandwiches while Linda relaxes on the couch, and folding laundry while she knits.

Now, as they reflect on the journey they have shared so far and prepare for it to continue evolving in the future, they share the tips that have helped them navigate the changes in their life and relationship following David’s PD diagnosis.

Please note: This is David’s experience with ONGENTYS. Results may vary.

Linda and David’s tips for working through PD together

  1. Establishing a Routine

Early on in David’s treatment, as she was conducting her own research on life with PD, Linda learned that it can be better for people with PD to handle one thing at a time.

So, she started by creating lists for David, which she says have guided them through their daily routine.

They’d begin each day going over that day’s list, filled with tasks they needed to achieve. Once David would finish a task, she’d then ask if he could help her with another, and so on.

Eventually, they learned that following daily lists wasn’t the best system for them—there was simply too much to keep track of and remember. Their routine evolved to instead rely on maintaining their phone calendars, which would establish a baseline of what they needed to do during the day.

For Linda and David, the method of coordinating phone calendars has proven to be the most effective way to get things done and keep track of their daily routine.

  1. Keeping medication organized

“Nothing is worth you not taking your medicine on time,” Linda points out.

She says she notices almost immediately whenever David doesn’t take his medicine, and she’ll make certain to remind him. This inspired her to come up with a couple different systems for them to keep track of his medicine together.

For one, she found a monthly pill organizer that allows her to label and section off his medication for each day. Then, one day at a time, she’ll take out that day’s worth of pills and put them in a previously used medicine bottle for him.

David has several daily alarms as a reminder to take his allotted pills throughout the day. So when he added once-daily ONGENTYS, he only had to set one additional new alarm.

  1. Planning ahead

There’s a reason why there are entire books on the power of preparation. It applies to caring for someone with a chronic condition, just as anything else.

One notable example Linda cites: Because of his tremors, David’s handwriting was growing more difficult to read. With this in mind, they immediately authorized Linda as David’s Power of Attorney.

This allowed Linda to sign off on important documents for David. It also prepared them for the possibility of David losing his ability to write all together.

  1. Communicating effectively

In any marriage, it’s crucial to be open, honest, and direct. As a care partner, Linda recognizes that those are ever more crucial.

When she started to remind David more and more to take his medicine, she would ask him if it bothered him to have her asking “Have you taken your medicine yet?” Fortunately, it doesn’t bother him one bit.

With open lines of communication on matters big and small, they work as a team by checking in on each other every step of the way.

While learning how to manage PD together has been challenging at times, David and Linda have found what works for them: a solid routine, open communication, and a positive outlook on life.

A Note from Neurocrine Biosciences

It was a pleasure to share Linda’s story as a care partner. Hear from David’s point of view as a person living with PD at themighty.com/topic/parkinsons-disease/parkinsons-put-his-life-on-pause-then-he-found-a-new-way-forward.

Every story is unique. If you or a loved one are living with Parkinson’s disease, talk to your doctor to figure out a treatment plan that’s right for you.

David and Linda were compensated by Neurocrine Biosciences to share their story. This promotional article is sponsored by Neurocrine Biosciences.

If you’re interested in learning more about ONGENTYS, please check out our resources at www.ONGENTYS.com/resources/.

 

Important Information

Approved Use

ONGENTYS® (opicapone) capsules is a prescription medicine used with levodopa and carbidopa in people with Parkinson’s disease (PD) who are having “OFF” episodes.

It is not known if ONGENTYS is safe and effective in children.

IMPORTANT SAFETY INFORMATION

Do not take ONGENTYS if you:

  • take a type of medicine called a non-selective monoamine-oxidase (MAO) inhibitor.
  • have a tumor that secretes hormones known as catecholamines.

Before taking ONGENTYS, tell your healthcare provider about all of your medical conditions, including if you:

  • have daytime sleepiness from a sleep disorder, have unexpected periods of sleep or sleepiness, or take a medicine to help you sleep or that makes you feel sleepy.
  • have had intense urges or unusual behaviors, including gambling, increased sex drive, binge eating, or compulsive shopping.
  • have a history of uncontrolled sudden movements (dyskinesia).
  • have had hallucinations or psychosis.
  • have liver or kidney problems.
  • are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Especially tell your healthcare provider if you take nonselective MAO inhibitors (such as phenelzine, tranylcypromine, and isocarboxazid) or catecholamine medicines (such as isoproterenol, epinephrine, norepinephrine, dopamine, and dobutamine), regardless of how you take the medicine (by mouth, inhaled, or by injection).

ONGENTYS and other medicines may affect each other causing side effects. ONGENTYS may affect the way other medicines work, and other medicines may affect how ONGENTYS works.

What should I avoid while taking ONGENTYS?

  • Do not drive, operate machinery, or do other dangerous activities until you know how ONGENTYS affects you.

What are the possible side effects of ONGENTYS?
ONGENTYS may cause serious side effects, including: 

  • Falling asleep during normal activities such as driving a car, talking or eating while taking ONGENTYS or other medicines used to treat Parkinson’s disease, without being drowsy or without warning. This may result in having accidents. Your chances of falling asleep while taking ONGENTYS are higher if you take other medicines that cause drowsiness.
  • Low blood pressure or dizziness, light headedness, or fainting.
  • Uncontrolled sudden movements (dyskinesia). ONGENTYS may cause uncontrolled sudden movements or make such movements worse or happen more often.
  • Seeing, hearing, or feeling things that are not real (hallucinations), believing things that are not real (delusions), or aggressive behavior.
  • Unusual urges (impulse control and compulsive disorders) such as urges to gamble, increased sexual urges, strong urges to spend money, binge eating, and the inability to control these urges.

Tell your healthcare provider if you experience any of these side effects or notice changes in your behavior.

The most common side effects of ONGENTYS include uncontrolled sudden movements (dyskinesia), constipation, increase in an enzyme called blood creatine kinase, low blood pressure, and weight loss.

These are not all of the possible side effects of ONGENTYS. Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Please see ONGENTYS full Product Information.

CP-OPC-US-0561 11/2022