Ellie has been a part of the Parkinson’s community ever since her father received his Parkinson’s disease (PD) diagnosis more than 12 years ago. Having undergone multiple surgeries and facing infection, he now lives in an assisted living facility where he is receiving care for not only his PD, but his other health complications. She visits him, often accompanied by a welcomed guest - her dog, Winnie Belle.

Winnie is a Great Pyrenees mix, but more than that, she is Ellie’s partner, teammate and inspiration. A working dog by breed, Winnie needed a task to keep her busy and motivated through life. Even as a puppy, Ellie noticed that Winnie was drawn to people. She was affectionate towards children and if anyone was ever in trouble, Winnie sought to comfort them. It was decided: Winnie would become a therapy dog. Unbeknownst to both, it was a matter of time before they would make their way to the PD community.

After some research, Ellie and Winnie joined Pet Partners: an organization that offers education for trainers, renewed registration every two years for the therapy team, and opportunities to volunteer. For three years, Winnie took part in a variety of obedience classes outside of the program to learn how to care and comfort people with a range of needs in a medical setting, while Ellie received training of her own to become a therapy dog handler.

Looking to connect to volunteer opportunities in the PD community, Ellie signed her and Winnie Belle up for the first-ever Moving Day fundraising walk in Nashville’s Percy Warner Park to participate in honor of her father and his fight against Parkinson’s disease. They attended as a therapy team. “Sometimes people are afraid to or don’t know how to approach people with Parkinson’s. Having a dog breaks the ice,” said Ellie about one man they met at the walk. Wheelchair-bound and likely experiencing facial masking due to his Parkinson’s, the man didn’t seem to take an interest in people. But Winnie caught his eye. He then spoke slowly and softly about his own pet and was thrilled to meet Winnie.

This is what Winnie Belle can do. Even Ellie’s father, who is not an animal-person, finds joy in Winnie’s visits.

She and Ellie have since become quite the therapy team: they volunteer at Vanderbilt children’s hospital twice a month, attend monthly events for young kids with special needs and even visit juvenile court every so often. “Everyone knows Winnie,” says Ellie about the kids, nurses, and staff they encounter, “they’re eyes light up when they see her.”

Hoping to support other therapy teams in Nashville, Ellie and other Pet Partner handlers started the local affiliate group called Music City Pet Partners in July of 2017. Since then, the group ran their own booth at an annual dog days event with the goal of extending the support of pet therapy teams to those who could truly use it. 

Ellie and Winnie plan to further explore dog therapy in the Parkinson’s community and rally more Pet Partners teams to attend Moving Day Nashville next year. They can’t wait.

Moving Day Nashville 2018 will take place on Saturday, April 7 at Centennial Park.

Learn more and register for the event

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.

Four years after a diagnosis of Parkinson's disease at age 44, Beth Bjerke took on a big challenge in a "grand" way. On April 11th, Bjerke, now 48, crossed the invisible finish line of Bright Angel Trail, a 20-mile hike to the bottom of the Grand Canyon and back again. The Tucson-resident and mother of two chose to hike the Grand Canyon during Parkinson’s Awareness Month to raise awareness of young-onset Parkinson's disease (YOPD) and the huge toll it takes on families.

"We're not all alike, but as a family, we live life on a tight rope," Bjerke explained. "My hope is to find ways to bring together kids who have a parent with Parkinson's and help them cope."

To prepare for the backpacking trip, Bjerke focused on setting short-term goals. “The Grand Canyon gave me a reason to get up and get going every day, and not give in to apathy,” she said. “I didn’t want to become depressed.” To regain her strength and balance, Bjerke worked with a personal trainer. “I went into the gym half-crunched over, like an 80-year-old lady, and came out looking normal again,” she said. Bjerke’s homegrown hiking team included her husband, her youngest son and his girlfriend, her stepsister and a close friend.

Together, they entered the Grand Canyon in a snow flurry and trekked to the bottom, reaching the Colorado river hours later. They continued their four-day journey on foot through unpredictable weather and amazing views. At one point, a painfully swollen toe threatened to sideline Bjerke, but the avid outdoorswoman decided to “cow girl up” and stuffed her purple toe back into her shoe and pressed forward in pursuit of her goal.

Bjerke’s family and friends surpassed her goal of raising $5,000 for the Parkinson's Foundation.

“After being diagnosed with PD, so many people say what now? We all start off that way,” she said. “For me, this is what works best; for how long, I don’t know, but I just came out of one of the Seven Natural Wonders of the World.” Today, Bjerke is taking scuba diving lessons and dreaming of paragliding the Grand Tetons someday. “You can dream,” she said. “It may not be the best time or conditions, but you can still reach for small goals and build on them.” 

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"I'm sorry. You have Parkinson's Disease." I stood in the parking lot, the receipt flapping in my trembling hand, completely stunned by the words I had just heard. At least my neurologist had the courtesy of saying, "I'm sorry" before delivering the news. Still, it didn't seem to lessen the blow any. I felt like someone had reached into my chest and squeezed all the air out of my lungs.

My personal PD story is unique, full of weird circumstances and irony. (But then again, whose PD story isn't?) I was officially diagnosed on April 4, 2006 (4/4/06) at the age of 46. I found the "numerical coincidence" to be a little disconcerting. (As an ex-ice hockey player, we all tend to be a little on the superstitious side.) It was also National Parkinson's Awareness Month, and believe me, I was aware! Prior to my diagnosis, I also had encounters with the two most famous faces of our disease, Michael J. Fox and Muhammad Ali.

Like most people with PD, as I looked back at the years prior to my diagnosis, I realized my symptoms started well before I knew that my brain was being invaded by an unwanted and uninvited visitor. The signs were all there, glowing like a brightly lit neon sign tattooed right across my forehead. I just didn't see it. And really, why would I? I was relatively young and in great shape physically, so there was certainly no reason to think I had something like PD. After all, it's an old person's disease, right? Wrong.

I ended up going to the doctor after years of stiffness (rigidity), slower walking (bradykinesia), problems with my writing (micrographia), lack of arm swing on my ride side when walking, and problems with my fine motor skills. I had severe pain (dystonia) between my shoulder blades and into the base of my neck. I was having problems holding pens and gripping my silverware when eating. Simply trying to get 3 crackers out of a box was becoming a huge ordeal. I even had some typical non-movement symptoms common in PD, like loss of smell, depression and sleep disturbances.

After blood tests to rule out other possibilities, two neurologists, one PD specialist, a trip to the Muhammad Ali Parkinson Research Center in Phoenix, AZ, and a two-week trial dose of Sinemet, the diagnosis was confirmed. Four times. Stunned doesn't even begin to describe how I felt. I wanted all the doctors to be wrong and say, "Sorry Todd, we made a mistake." But reality slapped me squarely across the face. Hard.

The challenges were just beginning. How do you tell someone you love that you've been diagnosed with a progressive neurodegenerative disease for which there is no cure? Sharing the news with my wife was quite possibly the hardest thing I've ever had to do. I felt a pain like nothing I've ever experienced before. And I can't even begin to imagine what was going through her mind as I delivered the devastating news.

I've always been a "Type A" personality. If I decide I'm going from "point A" to "point B," you best get out of my way, because I'll get there come hell or high water. And I almost always have multiple projects going on. In the old story of the rabbit and the tortoise, I was the rabbit. Zipping around as fast as I could, getting my hands into anything and everything. It wasn't about winning but enjoying the adventure. Well, I do like to win whenever possible!

But now with PD, I've come to realize that I have to be the tortoise. Slow and steady may indeed win the race, but when you're used to the rabbit lifestyle, transitioning to the tortoise isn't easy by any means. PD, however, has dictated the change and all I can do is go along. I wasn't really given a choice in the matter.

I decided to research and read anything and everything about PD that I could get my hands on. Well, I did read things that scared me. Let's be honest, it's scary to have a disease in which you can clearly see your future and know that there is nothing anyone can (currently) do to stop it. It's like being in a car going down a steep hill and realizing the brakes don't work. You can steer all you want but the crash is unavoidable. Maybe just being in denial would be the better option. But education is power, so I continued to learn as much as I could.

The biggest step was meeting others with PD, those who have already traveled down the path that I was about to go down. And yes, some were far more progressed than I. But something unexpected happened. Instead of being frightened, I felt comforted. I felt accepted. I knew they understood me, what I was going through, and what I was about to go through. I felt like I was part of a loving, caring family. I felt safe. Meeting fellow people with PD was the best thing I could have done. Isolation is a killer, camaraderie builds strength.

I'm more inspired than ever. Even though I met people who lost careers and had to dramatically alter their lifestyles, I discovered many who found new joys and talents they never knew existed. It's as if they were butterflies just waiting to be released from their cocoons. From their experiences, I've gained a perspective on life that has forever altered how I look at myself, and the world around me.

PD has changed me into the tortoise and has allowed me to see all the small moments in life that are so incredibly rewarding and powerful. Moments that as the rabbit, I would have missed.

Currently, I'm a motivational and inspirational speaker who has traveled all over the country talking about living with PD. I've started a very successful young-onset group in my area. And I’ve decided that I’m not going to “live with” PD but instead, I’m going to “fight” it every step of the way through knowledge, diet, exercise, and most importantly, attitude. While PD may have taken away some parts of my life, it's also given me a new purpose, focus, and direction, and that's not a bad thing. Being the tortoise does indeed have its advantages.

Todd Bischoff lives in California with his wife Joyce and their dog Kaylee. Todd is an ex-athlete, actor, radio personality, voice-over artist, and Child Life Specialist who now is a motivational and inspirational speaker.

As you process your or a loved one’s diagnosis, we are here to assist and empower you at every stage. When you’re ready, explore our Newly Diagnosed kit and start your journey to living well with Parkinson’s.

Who would have ever believed the words “you have Parkinson Disease” at the age of 33? I sure didn't want to. I had a brand new baby at home, a good job, my independence. I am here to tell you, it’s ok, you don't need to surrender to this sly disease that sneaks up on you ever so subtly.

It took me some time to come to the realization that, yes, I have a disease that will change some aspects of my life. The key to that was learning that I had other talents, new paths to walk down, and a choice to surrender or stand up.

It was obvious to me at that moment that I had an opportunity to make a difference and make people stop and look, and really listen. My job now is creating awareness. My advantage is my age and the fact that I am a young mom fighting this battle. Having PD has brought the creative side out of me, writing poems is something new to me that I really enjoy. Photography is also a fun hobby that I have more time for now.

My true passion, though, is my five year old daughter, and being her mom. She keeps me on my toes at all times, helps me stay active and gives me a desire to keep pushing forward. She puts a fire in my heart to kick PD as hard as I can and to challenge myself. At nights end, tired and worn, I tuck her into bed and thank God for sharing her with me.

The unconditional love given and the innocence of a child is truly priceless. My victory each day is being able to wrap my arms around her and kiss her goodnight. As her tiny little fingers grasp mine, I can ease all her fears, give her comfort that I am here for her, and at the same time she is completing me also.

I do not question why I have PD, I accept it, move forward, and gain strength from it. How can I feel sad when I look around and have so much to live for and love? Find that inner place that brings you peace and puts a smile in your heart and on your face, then embrace it and enjoy it.

You deserve to be happy, nothing or no one can stand in your way and keep you down except you.