Unfortunately, Parkinson’s disease (PD) has been a part of my life story for quite some time. In 1985, I gave up on my dream to go to Nashville to work with The Nashville Network so I could move back to New Jersey to care for my parents. They had both been diagnosed with Parkinson’s. For the next 10 years, I was their primary caregiver.

My parents were vibrant, active people before Parkinson’s. My father, John, was a successful production manager of the control panels on the Gemini, Mercury and Apollo space missions, which is why I was deeply saddened the day I walked into the kitchen — many years after he retired — and he introduced me to his co-worker, but all I saw was an empty chair. My mother, Peggy, was a great basketball player and a runway model in her youth. She worked hard as a secretary and loved to go to Long Beach Island, NJ. She also eventually suffered from delusions. It still saddens me that she was never really able to enjoy the limited time she had with her granddaughter, my first-born, due to the fact that she couldn’t recognize her.

Despite being prepared to help my parents cope with motor symptoms typical of Parkinson’s, I was surprised when they both began to experience non-motor symptoms including hallucinations (seeing things that aren’t there) and delusions (false beliefs). At the time, I didn’t know that PD associated psychosis affects more than half of people with Parkinson’s over the course of their disease.

In 2014, Parkinson’s reared its ugly head again, when my sister was diagnosed. Where once she was full of life and quick-witted, today her personality is overshadowed by seeing things that aren’t really there. Frequently, she will see a snake on her hand, men in the trees outside, dogs at the door or even barbershop quartets in the wall.

Caring for people who see or believe things that are not real can be emotionally draining. My best coping mechanism is to sing. In 2015, I wrote and performed a song at an event hosted by Light of Day, a non-profit dedicated to Parkinson’s. Performing was cathartic.

Soon after, I was told about a clinical trial for a medication, Pimavanserin (brand name: Nuplazid), that specifically treats hallucinations and delusions associated with PD psychosis. Although my sister did not have access to this medication in its trail phase, I jumped on the chance to share my story as a caregiver with the expert panel that deliberated the recommendation of the drug’s approval to the US Food and Drug Administration (FDA).  

After 30 years of feeling helpless while dealing with PD associated psychosis, I felt empowered to be a force for change. I was overjoyed that my story was heard!

Thankfully, the first treatment for PD associated psychosis was recently approved by the FDA. We’re still uncertain how the medicine will help my sister’s current PD symptoms, but at least there is hope.

I share my story to raise awareness about the prevalence of PD psychosis and the impact it has on people with Parkinson’s, caregivers and their families. My advice to others is to learn more about non-motor symptoms and to talk to your loved one’s doctor. Reach out for support and know that you’re not alone.

Read Psychosis, A Mind Guide to Parkinson’s disease to learn more

English

My dad, Jorge, was born in 1942 in Mexico to a hardworking family. My father and grandfather started a company dedicated to manufacturing hand-made, artisanal candy. Eventually the company prospered and was recognized in Mexico and throughout Latin America.

My father’s Parkinson’s disease (PD) symptoms first manifested as fatigue. He would get exhausted from just walking. His face also started to change. He underwent medical tests and exams until the doctor diagnosed him with Parkinson’s in 2005. He was given Sinemet as his primary medication to help with symptoms. Here in Mexico, we pay for health insurance so he can regularly visit a neurologist, psychologist and psychiatrist to manage his PD and make adjustments to his medications.

Over the last 11 years his health and quality of life started to deteriorate. But recently, something inspired him to begin making homemade candy again. It’s become a hobby for him. He’s been teaching young adults how to make his artisanal candy, because it is a craft after all. Since he’s returned to his passion he’s now coping better with his Parkinson’s and his mood has improved as well.

In order to make his artisanal candy he has to constantly move. His Parkinson’s makes his muscles rigid, but when he’s constantly moving to mold the candy it breaks his rigidity. When he stops moving he gets tired since the PD affects his energy. He’s also lost a lot of weight and muscle mass, which makes his body weaker.

In Mexico we can’t find any PD support groups to attend. We consider ourselves lucky to have access to his medications, although they are expensive. There are people here who do not have access to the resources we do because they are enrolled in the country’s free health insurance, which is not sufficient. My father has met very few people with PD here in Mexico. He’s never been outgoing, but now with PD he’s even less willing to make new friends. However, his outlook and desire to speak to people completely change when he’s around his assistants in the confectionary or teaching others how to mold candy.

I wanted to share a video of my father making candy because it makes me happy to see how he’s living his life again. He is trying to make his life better and not let PD win. I’m incredibly proud of him.

Español

Mi padre, Jorge, nació en 1942 en México a una familia trabajadora. Mi padre y abuelo empezaron una empresa dedicada a la fabricación de dulces hechos a mano. Con el tiempo la empresa se hizo muy conocido dentro de México y en toda América Latina.

Para mi padre, los síntomas de la enfermedad de Parkinson manifestaron por primera vez como fatiga. Se ponía agotado de sólo caminando. Su cara también empezó a cambiar. Fue a pruebas médicas y exámenes hasta que el médico le diagnosticó con Parkinson en 2005. Le dio Sinemet como su principal medicina para aliviar los síntomas. Aquí en México, pagamos para el seguro de salud para que mi padre puede ir regularmente a un neurólogo, psicólogo y psiquiatra para gestionar los medicamentos y el Parkinson.

Su salud y calidad de vida empezaron a deteriorar durante los últimos 11 años. Pero recientemente algo le inspiró para empezar a hacer los caramelos de mano otra vez. Ahora es un pasatiempo para él. Es algo que le gusta y quiso intentar de nuevo con algunos ayudantes y enseñar a gente joven también porque es un trabajo artesanal. Desde que ha vuelto a su pasión está mejorando con su enfermedad de Parkinson y su estado de ánimo.

Mi padre tiene que moverse constantemente para preparar los caramelos. El Parkinson deja sus músculos rígidos, pero cuando está en constante movimiento haciendo los caramelos se rompe su rigidez, ayudando al cuerpo temporalmente. Está cansado después porque es un trabajo duro y el Parkinson le ha hecho perder peso y masa muscular.

No hay grupos de apoyo para el Parkinson en la ciudad. Nos consideramos afortunados que es fácil conseguir los medicamentos, aunque no son baratos. Aquí hay personas que no tienen acceso a todos los recursos porque tienen el seguro de salud gratuito que no es suficiente. Mi padre solamente ha conocido a algunas personas en México con el Parkinson, pero no es muy sociable y no hace amistades fácilmente. Él siempre fue así, y es más difícil socializarse ahora que tiene el Parkinson. 

Sin embargo, su punto de vista y el deseo de hablar con la gente cambia cuando está alrededor de sus ayudantes en la confitería y cuando está enseñando a otros cómo moldear el caramelo.

Quería compartir un video de mi padre trabajando con los caramelos porque estoy feliz verle viviendo su vida de nuevo. Él está tratando a mejorar su vida para no dejar que el Parkinson gana. Estoy muy orgullosa de él.

My name is Christian, I’m 36 years old and I have young-onset Parkinson’s disease (PD). My goal in life is to inspire and motivate people, helping them believe that anything is possible and every obstacle can be overcome. I stress the importance of exercise, which is the only proven action that can slow PD symptoms from progressing.

I am a happily married with two beautiful kids. I am a full-time professional massage therapist and an obstacle course trail runner. Until recently, I lived in silence with my condition. I was trying to protect my family, but in reality I was protecting myself. I was afraid I’d lose my job because people wouldn’t want a massage therapist with PD.

My PD story began during a brief time in my life when I was inactive and unhealthy. I was 225 pounds and borderline diabetic. I was 31 and we were expecting our first child. I noticed a slight twitch in my right hand and had frequent heartburn. I saw a gastroenterologist who diagnosed me with fatty liver and gastritis inflammation, but I still had the tremor.

I went to a neurologist, who concluded that I had essential familial tremor and prescribed primidone. I saw her regularly until a new insurance plan caused a gap between appointments, which is when the tremor traveled from my hand to my foot. The neurologist implied that the new tremor occurred due to the delay in appointments. Primidone left me mentally foggy so I was switched to Propranolol. But I still felt that something else going on. During this period, I was never motivated to exercise.

In July 2014, I had a DAT-SPEC scan in hopes that it would rule out other conditions and confirm essential tremor. Something felt wrong when the technicians were surprised to see someone my age. Weeks went by. Finally, I saw my doctor and she bluntly said, “Just as suspected you have Parkinson’s. Here is some medication and I will see you in three weeks.” I was 34. I did not understand the diagnosis or the new medications.

I developed insomnia and grew incredibly depressed. The news of Robin Williams having PD and Lewy body dementia hit me. I started losing my mind over this condition. I kept thinking “stop shaking, I can control this.” My wife did not know what to do until a friend recommended a movement disorders specialist. He confirmed the PD diagnosis and changed my dosages. He spent almost two hours explaining Parkinson’s and assured me that I would be able to live a full life with PD. He also said that EXERCISE is essential in slowing the rate of progression.

It took several months to regulate my medication. My wife signed us up for a 5K jingle bell run. The whole family ran and had a great time. We all dressed like Santa. This was my first race. It felt great to run.

My wife signed us up for another race, which changed my life. I trained for a 5K. On race day I realized it was actually the Spartan Super 9-10 mile obstacle course. I was terrified. From the beginning I was in complete agony, but I didn’t quit. Some obstacles took a few attempts, but I flipped my first 300-pound tire, falling face down on it in the process. I took my time at each obstacle. I ran full speed at an 8-foot wall, grabbing the top of it and nearly breaking my foot. Hiding my PD for so long made me isolated so when a fellow Spartan asked if I was okay, referring to my foot, I ended up telling him I had PD. It was the first time I told anyone outside of my family. He helped me over the wall. For the next five miles I limped and hobbled through obstacles. Thinking of my family and children kept me going. That day I become a Spartan and a warrior against the battle of PD.

I started training regularly. Today, I weigh 165 pounds and I am a lean mean muscle machine. I lost weight and ate healthier in hopes that a new lifestyle would slow my PD progression. Since then I have completed five Spartan races, becoming the first person with PD to complete a Spartan Trifecta. I will compete in several more this year. My wife is a personal trainer and helps me train, not only for races, but to be a better father and husband.

I train like an elite athlete now. I have run a 6:15 mile. I am a trail runner, which helps my balance and proprioception. I lift weights to have better control of my body. I cross train with boxing and agility plyometrics at DopaMind boxing, which combats PD and effectively stimulates neurocognitive pathways.

PD is a part of me, but does not define me. In fact, it has elevated me to another level of grit, determination and perseverance that has transcended me in all aspects of my life. I want to inspire and spread awareness of how exercise helps people with PD. I am getting certified in personal training so I can help people with Parkinson’s. I once viewed my condition as a death sentence. Now I look at it as if I was chosen to do great things. I strive to run side by side with Allison Toepperwien, the first person with PD to compete on “American Ninja Warrior.”

I want to tell people with PD that whatever you decide, keep moving and don’t ever give up. One foot after another, move with forward progress. Don’t give up on me because I won’t give up on you. When the struggle is all you know, fighting becomes natural and quitting becomes impossible.

I have young-onset Parkinson’s disease. I’ve had it for at least 6 years, but it wasn’t until New Year’s Eve of 2014 when I was diagnosed. I’ve always been active. Growing up, I did gymnastics, cheerleading, track and cross country. When I was a young adult I became a certified Personal Trainer. Two years prior to my diagnosis, I began working out regularly, lifting weights and cardio training three to five days a week. I felt good. Exercise gave me the strength and energy I needed to keep up with my toddler.

After I was diagnosed, I was put on the trifecta of PD drugs: Azilect, Mirapex and Sinemet. Then I read how exercise was THE ONLY THING proven to slow the progression of PD. So, I began training much harder than I ever had. I began going to my local track and running up to a mile at a fast sprint. I walked the bleachers, working my way up to three sets of 10 to strengthen my core. Bleachers were tricky at first because of my balance problems, but by repeatedly sticking to my routine, balance became less of an issue.

I eventually worked up to a 400-meter sprint, finishing only 10 seconds slower than my high school time! The summer heat led me to begin working out indoors. After renewing my membership three to five days a week I would go to the gym and lift weights, alternating upper body and lower body. Because my left arm has the tremor, I lift as heavy as I can with my left shoulder to compensate for the stiff, rigid movement and lack of strength.

Last August, I began to train for the Savage Race – 7 miles interlaced with an intense 25-obstacle course. As part of my training I started going to my daughter’s elementary school to use the monkey bars twice a week. Something I realized after the race is that PD effects recovery time. When I used to work out or compete I would be out for a couple of days, and then I had the energy and stamina to take up where I left off. Although I finished strong, the Savage Race demolished my energy for about a month. I lost five pounds of muscle and when I went back to the gym, I had to cut back considerably and work my way back up.

Today, I’ve applied to be an American Ninja Warrior competitor. Why? Because I wish to break boundaries. I want to inspire people to get off the couch. I want people with PD to realize this disease can be controlled to a major extent by exercise.

I’ve experienced the benefits of exercise in my sleep. My PD therapy is doing weights or running the track. I have more energy, stamina and strength than many men my age.

The National Parkinson Foundation is instrumental in fighting this disease. As a nonprofit, they recognize how incredibly important it is to exercise. Early on in my process, someone with PD told me, “Whatever you do, don’t stop. If you stop, the disease will take hold of you.” To be a part of a team that believes in that, motivates and educates movement and exercise was a no brainer for me.

I look forward to not only helping plan, but also participating in Texas’ first Moving Day® DFW! I went to college in Dallas and I think it’s the perfect spot to show the rest of America how Texans are pounding the pavement against Parkinson’s.

Allison Toepperwein is a single mom, blogger and fitness enthusiast who is overcoming Parkinson’s. She blogs about living with hope at www.LitWithinBlog.com.

Check out Allison's American Ninja Warrior Submission:

As a professional health liaison, Charles Harris has dedicated his career to helping people navigate complex health challenges like Parkinson’s disease (PD). He has recently channeled his devotion to patient-and-family-centered care into his new roles as Advisory Board member for the Parkinson’s Foundation and Mid-Atlantic campaign chair for the Reach Further campaign.

Throughout his career, Charles has worked closely with people diagnosed with Parkinson’s and their family members. He is often the first person to talk with patients and families about care needs and helps connect them with support resources.

“I have encouraged people with Parkinson’s to reach out to the Parkinson’s Foundation for support, for information, education, and simply to know that they are not alone,” said Charles. “I also encourage care partners to make proactive steps, educate themselves and obtain as much support as they can.”

Driven by his passion to help those facing Parkinson’s, Charles will work to inspire his community to support Reach Further’s ambitious goals: raising an additional $30 million over four years to accelerate Parkinson’s research and increase access to healthcare and quality-of-life programs.

“My background educationally is in psychology, so I’ve always been a people person, and have wanted to help people feel empowered to make decisions that are best for them and for their loved ones when it comes to health care and support,” said Charles. “I am so glad to have the opportunity to bring this experience to my role with the Parkinson’s Foundation and Reach Further.”

Charles, a resident of Washington, D.C., is also passionate about healthcare access, especially in underserved regions and communities. In his city, he describes having a “wealth of healthcare access.”

Charles said, “I come from a family that educated me on the importance of good health care. Not everyone has that privilege. Just 40 to 60 miles from D.C., like across the border in the Appalachian regions of West Virginia, you are in a health care desert.”

Reach Further aims to address disparities in attaining top-quality neurocognitive care and support for people with Parkinson’s. At present, the delivery of comprehensive Parkinson’s resources in the United States is not easily accessible outside of the Parkinson’s Foundation Global Care Network. The campaign aspires to provide better, more attainable care to the one million Americans living with Parkinson’s. It will expand the Global Care Network by 25 percent to areas where little or no comprehensive care currently exists, with a particular emphasis on underserved and hard-to-reach areas.

“PD is not an easy diagnosis to hear or to maneuver, but it is maneuverable,” said Charles. “I want people with PD and their loved ones to know that the Parkinson’s Foundation is here for everyone on this journey.”

Help Us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach or call the Helpline at 1-800-4PD-INFO (73-4636).

Hanah and her grandmother, Pamela, live in Williamsport, IN. Hanah is 17 and will be starting her Senior year of high school, and she recently donated $2,111 to the Indiana University School of Medicine, a Parkinson’s Foundation Center of Excellence as a thank you for how they have changed her grandmother’s life since her Parkinson’s disease (PD) diagnosis.

“I’ve always wanted to do something for my grandma because she always supports me,” Hanah said. “Originally, I was going to do something small, but the more research I did, the more excited I got. I realized how much Parkinson’s research still needs to be done.”

Hanah launched a fundraising campaign with the support of her school. She raised money through hosting 50/50 raffles at basketball and football games. “Some people even donated their raffle winnings back to the PD fundraiser,” Hanah said.

She also hosted pocket change collections at school and at school events. At her local elementary school she hosted a “Penny War.” Each grade was given two buckets: one for pennies and one for anything larger. Pennies counted as positive and anything larger counted as negative. So, when you add pennies to your grade’s bucket it is a positive. When another grade looks like they are gaining a lead, you add larger coins/dollars to make them go negative.

She also was interviewed several times by George Hardibeck, a local radio show host for the rival high school’s games. He donated $100 to her fundraiser every interview.

While she was managing her intricate fundraiser, she also collected 300 shoes to donate to a domestic violence shelter, and collected 2,692 medicine bottles to donate them to Mathew 25 Ministries, an organization that sends pill bottles to other countries who do not have the resources to make pill bottles and reuses them.

When asked what prompted her interest in raising money for Parkinson’s disease, she said, “Personally, the disease really changed my grandma before she underwent deep brain stimulation (DBS) surgery. She couldn’t drive or come watch me cheer ― she was a different person. After the surgery, she was able to be herself again. I wanted to do something to honor her and make her happy.”

When asked why Indiana University School of Medicine, where her grandmother receives PD treatment, she said, “I want the money to go to research. I like knowing it is going to a place that has helped my grandmother so much on a personal basis.”

Hanah hopes to attend Indiana University and study chemistry.

Fundraise on your own terms.
Begin a fundraising campaign at Parkinson.org/Champions