Parkinson’s Put His Life on Pause. Then He Found A New Way Forward.
David and Linda were compensated by Neurocrine Biosciences to share their story.
Imagine you’re in the lively city of New Orleans. Imagine you’re 16 years of age. Imagine you’ve turned your passion for playing chess into a chance to compete against an American Chess Grandmaster and World Chess Champion.
Now, imagine this: You don’t simply just play against that World Chess Champion; you actually defeat him.
Meet David. He doesn’t have to imagine any of these things—he lived them.
His accomplishments didn’t stop on the chessboard either. Since then, David has continued to pile up incredible feats—joining the service, running his own company, and above all, building a family with his lovely wife of 53 years, Linda.
Today, David and Linda are enjoying their retirement in Idaho, where they are close to their son and his family.
While David’s life has been full of unique circumstances and extraordinary achievements, there is one thing he shares with nearly one million Americans: a diagnosis of Parkinson’s disease (PD).
From finding a diagnosis to finding a treatment
In the 1990s, David lost his sense of smell. Then, in 2017, he started to experience tremors in his right hand. Because of this more recent development and his family history with PD, David decided to visit his doctor.
However, the doctor initially misdiagnosed him with essential tremor. It took David a couple of years experiencing these persistent tremors for the diagnosis to change: ultimately, he was officially diagnosed with PD and referred to a new doctor.
From there, his PD treatment journey began.
Like many others with PD, what started out as three daily doses of levodopa and carbidopa, the medication combination frequently used in early treatment of PD, gradually turned into four. Although the initial courses of levodopa and carbidopa would help, David still found that the medication would wear off before the next dose.
“The medicine would get in my system and work well for a while, and then start to taper off,” David recalls.
This is when David started to understand what OFF time looked like for him: tremors, slowness of movement, freezing of his feet and legs when he tried to walk, as well as balance issues. He also said that performing daily tasks required a lot more energy and would result in him needing to rest in between activities.
At this stage of his treatment, he often experienced tremors in his right hand, or his legs would freeze up after he got up first thing in the morning to walk to the bathroom. To David, it felt like he was spending more time managing his medication than he was experiencing symptom relief.
His doctor then suggested that he try an extended-release levodopa and carbidopa medication. While the extended-release levodopa and carbidopa treatment helped alleviate symptoms, David still experienced a meaningful amount of OFF time.
This was when he learned of 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.
A new choice, a new outlook
It was his doctor who first introduced the idea of ONGENTYS: “Try this. I think this could make a difference for you.” After being prescribed the medication, David noticed a reduction in his OFF time symptoms.
While experiencing less OFF time, David has fewer tremors which helps him get back to doing things he enjoys most, like chess. All in all, David noticed that with the reduction in OFF time, he’s accomplishing daily tasks that had been difficult to complete since his initial diagnosis.
It’s also been a nice surprise for Linda: “I can sit down and relax, and he can make me a sandwich.”
How a simple once-daily dose has impacted David
Please note: This is David’s experience with ONGENTYS. Results may vary.
With David’s previous treatment regimen, his tremors would return throughout the day before his next dose. Now David is quick to advocate for the use of ONGENTYS for others living with PD.
One major positive he calls out: the ease and simplicity of a once-daily dose that helps reduce OFF time.
“The levodopa/carbidopa helps, but ONGENTYS helps the levodopa/carbidopa. And together, there is a more lasting effect [than levodopa/carbidopa alone] throughout the whole day,” David says, speaking to his reductions in OFF time symptoms and reflecting on his thankfulness for finding a prescription medicine that works for him.
In addition to urging people to consider talking to their doctors about ONGENTYS to see if it is right for them, David also wants to share the other key lessons he’s picked up through his lived experience with PD:
What has helped David during his PD treatment
- Joining a PD support group
Upon his diagnosis, David and Linda were adamant about finding a good support group. They found one online and they are still connected to the group to this day, attending virtual meetings from time to time.
Their support group made a significant difference for David’s initial approach to treatment by setting clear expectations about what could happen down the road.
“Everybody seemed to be doing alright with [PD]. I mean, yes, it’s affected them, but not to the point where they had to give up hope.”
To David and Linda, knowing other people were finding ways to manage the condition regardless of the symptoms that come along with PD helped them feel optimistic and encouraged them to persist in finding a treatment plan that works for their lives.
- Finding ways to de-stress
Even with a long track record of overcoming challenges in his personal and professional life, David reflects on how he is not immune to stress—occasionally he feels overwhelmed by the stresses brought on by navigating everyday life with PD.
He emphasizes that it’s important to find ways to de-stress, as stress has triggered his PD symptoms to return or worsen.
When he finds himself in need of his own de-stressing strategy, David spends time with his family.
- Keeping a positive outlook
Before finishing his interview for this piece, David shared his outlook on life, which has served him throughout his experiences navigating life with PD.
“It’s important to be thankful for what you’ve got—and for the progress science is making against the disease.”
David has found a way to do just that through his PD journey, and he is thankful to continue doing what he loves: playing chess every Sunday with his friends.
A Note from Neurocrine Biosciences
David and his wife, Linda, are exceptional people. It was a pleasure to share their story. Hear from Linda’s point of view as a care partner at themighty.com/topic/parkinsons-disease/how-to-work-together-to-manage-your-spouses-parkinsons-treatment.
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/.
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.