Patrick Welch, PhD, Sgt. USMC (Ret.) is a member of, and tireless advocate for, both the veterans’ community and the Parkinson’s community. Dr. Welch was awarded a Purple Heart for his service in Vietnam, founded the Center for Veterans and Veteran Family Services at Daemen College, and previously served as the Director of the Erie County Veterans Service Agency in New York.

Dr. Welch works with the Parkinson’s Foundation to spread awareness about PD, support veterans on their PD journey, and provide education on the critical importance of exercise for people living with this disease.

visit Parkinson.org/Veterans for resources

Movement disorders specialist Leila Montaser Kouhsari, MD, wanted to become a neurologist at six, after losing someone she loved and admired. Her grandfather, Mohsen Ziaei, passed away after a devastating car accident left him in a coma, with no brain activity.

“I learned in a very difficult way that if your brain isn’t functioning, you cannot survive,” Dr. Montaser Kouhsari said, who today practices medicine at Stanford Neuroscience Health Center.

Not many can say their career path held true from childhood, but for Dr. Montaser Kouhsari, it did. Throughout medical school, graduate school and her fellowship, she pursued her passion of neurology. Taking it a step further, she kept gravitating towards Parkinson’s disease (PD) — and movement disorders — as a specialty.

“During my training, I met a lot of people with different neurological diseases,” she said. “I found that patients with Parkinson’s were all really nice and always left me inspired by how much they wanted to do everything in their power to help manage their disease and help themselves. I was able to connect with them on that level.”

During her fellowship, she researched the role dopamine plays in cognition (decision-making, motivation, learning and cognitive control) “I thought with my research, I could be useful to this particular group of patients. I ultimately chose Stanford because I could continue my research and help patients.”

Dr. Montaser Kouhsari’s ongoing research can change the future of how we treat cognition symptoms in Parkinson’s. Today, she is working to identify a biomarker (an identifier that can be used for diagnosing Parkinson’s and tracking disease progression) that would monitor cognition changes.

“With current neurological testing, we cannot identify which people with Parkinson’s will develop cognitive impairment,” Dr. Montaser Kouhsari said. “We don’t have a biomarker to assess the progression of the disease or cognitive symptoms. With more advanced testing, we can bring neuroscience testing tools, such as those I developed during my PhD, to nail down cognitive symptoms much earlier on and offer treatment earlier in the disease. This is important because people with Parkinson’s are more at risk of cognitive impairment and dementia.”

In addition to her research, Dr. Montaser Kouhsari regularly treats patients with Parkinson’s, a skill she likens more to an art.

“As neurologists, we need to have a very good rapport and be very observant. Every patent is different — we rely on the history they give us, so we can treat their symptoms and their needs. With this disease, we see our patients over many years and we build a relationship with them and their families, which is very beautiful. You become part of the family. It’s a privilege to be able to join them on this journey,” said Dr. Montaser Kouhsari.

When it comes to answering all her patient’s questions, she often refers them to the Parkinson’s Foundation. “I always use the Parkinson’s Foundation. When people have questions and need resources and materials, or if they’re looking for exercise or support groups, I always point them there. If they want to volunteer or donate, I also advise for them to contact the Foundation.”

Dr. Montaser Kouhsari believes in the work of the Foundation, which why she serves on the Parkinson’s Foundation California Chapter Board. “Throughout my training and career, I have always heard that the Parkinson’s Foundation funds research and fellowships. I am excited to be on the board and look forward to joining the Parkinson’s community at local events.”

When it comes to being a female movement disorder specialist who is part of a neurology division that is majority female at Stanford and treating women with Parkinson’s (who often are not adequately represented when it comes to Parkinson’s), Dr. Montaser Kouhsari shares her keen observations.

“I can relate to our female patients with Parkinson’s,” she said. “It can be really hard to be a mom and a wife, and having Parkinson’s makes it difficult to fulfill so many responsibilities. I’ve had patients whose families are so supportive — and patients whose families didn’t know how much their mother/wife would be affected by the disease. I think it’s important to be more attentive to our female patients and offer more help.”

When it comes to everyone living with Parkinson’s, as a neurologist, Dr. Montaser Kouhsari’s advice is to “really listen to your body. Your doctor can help provide information about your symptoms and how they relate to medications and your progression, but be observant of your symptoms. We really need as much information as possible to provide the best treatment.”

It was like skiing with a wooden leg.

It was January 29, 2011, and I was competing in the 50-km Noquemanon Ski Marathon. I was only 5 or 10 km into the course when the wooden-leg effect struck. It affected me every time I climbed a hill or pushed my pace. If I relaxed for a minute or two it would go away, but it always returned.

The hopes I had for a podium finish in my age group were clearly not to be fulfilled.

I was seen by regional sports medicine doctors and the Mayo Clinic at that time, but no one could provide a definitive diagnosis. I strongly suspect that this was an early indication of Parkinson’s disease (PD). Other symptoms appeared over time. I knew that something was wrong and that it was getting worse.

It wasn’t until February of 2019 that the diagnosis of Parkinson’s disease became evident. It is a diagnosis that was too familiar: my wife, Sally, also lives with PD.

Excellent medical care, a very active lifestyle, and good social connections have all helped me cope with my diagnosis and live well with PD.

In 2020, another outlet for dealing with Parkinson’s found me: music.

I was wide awake, at 3 AM in October of 2020, with the strains of Dolly Parton’s “9-to-5” running through my brain like an earworm. As I lay there, words started to come into my head —words about Parkinson’s — that fit the 9-to-5 tune. I soon realized that I needed to get up and write it all down or I would forget it.

I got up and turned on the computer.

Sally heard me talking to myself and singing and called out to ask what was going on. “I’m composing!” I called back. Over the next several weeks the entire song came together, but I had no idea what to do with it.

In November 2020, Sally and I had our semiannual appointments with our neurologist at the University of Michigan. At the end of my visit, I suggested that if my doctor had 3 minutes and 35 seconds to waste, I would sing him a song about Parkinson’s that I had written. He agreed, and I played a karaoke version of 9-to-5 and sang along. He got a kick out of it and asked me if I would send him the lyrics! He shared them with some of his colleagues, who forwarded them on to others.

About three weeks later the Parkinson’s Foundation reached out and asked if I could send a video of me singing the song!

I decided if I was going to make a video, I needed a band.

I found a talented local rock group that was interested in working with me. After weekly rehearsals for several months and the band’s patient guidance, we were ready.

We secured an auditorium (no small task in the middle of the pandemic) a videographer and a sound and lighting technician, and recorded We’ve got Parkinson’s, along with a second song that I had written to the tune of Stevie Ray Vaughn’s “Pride and Joy.”

After months of post-production, we finally had our music video! I sincerely hope it brings joy and laughter to others who are dealing with PD.

My Parkinson’s is well managed. I believe that exercise, especially mountain biking, has helped tremendously. I am fortunate to live in a place like Marquette, Michigan where I can ride my road bike and mountain bike on a nationally recognized trail system. There is something magical about the mountain bike. Riding involves balance, coordination, concentration and quick decision making. When I get on the bike, my balance issues disappear and everything is fine.

I strongly encourage others with PD to keep pursuing their passions and their creativity – even in the most unexpected ways!

Videography by Nick Slattery
Editing by Nick Jensen and Nick Slattery
Music performed by Maynards and Friends
Words and vocal by Bruce Closser

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: