I was diagnosed with Parkinson’s disease (PD) in 2018. Four years prior to that, I suffered through shoulder and back pain, foot cramps and hand surgery that didn’t heal — all on my left side. I was also suffering from depression, fatigue and an overwhelming sense of apathy. 

During a regular check-up, I mentioned my symptoms to my general practitioner who suggested I see a neurologist. Almost on the spot, she diagnosed me with PD and recommended that I see a movement disorder specialist. On January 29, 2018, my life changed forever as Lee, my husband, and I sat in the doctor’s office where the original diagnosis was confirmed. I was 52. 

Following the diagnosis, I felt paralyzed and sat on the couch numb. Then, I got a call that changed my life ― a recommendation to a PD boxing group. I have never exercised consistently. I never felt the endorphin rush people talk about when working out, but somehow I got myself into the gym and started boxing with LDBF Boxing for Parkinson’s (Pdboxing.org).

LDBF is my new village. I am in the best physical shape of my life. It’s more than boxing. It’s a camaraderie shared between the boxers, trainers and volunteers — all of whom contribute to my emotional healing on a daily basis.

I began to box in April, three months after the diagnosis. I did not go willingly. I hid behind the bags out of breath and demoralized. Then one day, I started to enjoy the workouts and sought out more challenging classes. LDBF’s “Inside the Ring” class taught by trainer Bryan Jensen fit the bill — a perfect mixture of inside the ring drills, sparring and floor work focusing on memory, balance and cardio.

My advice to someone newly diagnosed:

1. Don’t wait. Find a boxing program. 
2. Be your own advocate. Make sure you feel comfortable with your doctor.
3. Find a mentor. I am developing an official young-onset PD mentorship program.
4. Dig deep for the courage to reach out.
5. Recognize there will be good days and bad. 

In addition to boxing, I also participate in the Parkinson’s Foundation Moving Day Atlanta event held every fall at Piedmont Park, as well as the special event Good Vibrations. Not only are these events fun, but they remind me and so many others that we are not alone.

FIND YOUR NEAREST MOVING DAY

I was diagnosed officially with Parkinson’s disease (PD) this past summer. I knew something was wrong with me for at least four years. I thought maybe since I'm in my 40's, it's normal to feel this fatigue. I taught art and design 13 years. I was happily married, the mother of three sons and worked part-time artwork and graphic design on the side. I lived a very healthy and socially active life.

My fatigued worsened. I noticed I was often off balance, my speech became impaired and my memory was awful. There were times during teaching when my speech would slur, and I would forget everything prepared in my lesson plan. It was embarrassing, but I was thankful to have students that loved me. I developed ulcers in my mouth, so I could only eat broth. My hair was falling out. My blood pressure was uncontrolled. I would wake up in the morning and it was 60/40 and I felt like I would pass out. Then by afternoon, I would get blinding headaches and my blood pressure would skyrocket to 160/105. I was taken medicine to bring my pressure up and then down.

The symptoms started piling up. I kept pushing myself until December 2017. I made it to Christmas break, and I thought resting would help me feel better. I began to realize this wasn't in my head this was real. I spent the entire Christmas break in bed. I knew something was wrong. There were days I didn't even have the strength to shower. I remember one night I crawled out of the shower because I was so weak, I couldn’t stand to turn the shower off. I had to yell for my husband to help me.

So, I started on the path of finding a doctor that would figure out what was wrong with me. No matter what type of physician I saw, they dismissed my symptoms. I was told it was anxiety-induced stress from being a working mother and that I should reduce the stress in my life. I was even told by a neurologist who was the head of the neurology department that if I had Parkinson’s, I would not be able to put my make up on so precisely. If you knew me, applying my black winged eyeliner was like tying my shoes. I was told that I was having a nervous breakdown, had an autoimmune disease, Epstein Barr virus, an infectious disease, sleep apnea, chronic fatigue syndrome and others.

Doctors would look at me and say I was too young for Parkinson’s or that women rarely have it. Everyone said, “Parkinson’s is an old man disease. How could you have that? You look fine." I found out people have a predisposed opinion of what the disease should look like, which is not a young woman in her early 40s who wore makeup.

I began to question myself. I wondered if I was making this up, maybe this is a nervous breakdown. Until one night my tremors got so bad, they wouldn't stop. I couldn't even speak. Finally, my local neurologist put me on carbidopa-levodopa and the tremors ceased.

Truth is several clinical studies have demonstrated that PD is less common in women than in men. It is the second most common neurological-disease next to Alzheimer’s and an estimated 10 million people worldwide have Parkinson’s.

Now here's the shocker, only 4% of both women and men are diagnosed under age 50! So why are women not receiving adequate care and research for the disease?

Researchers at the University of Pennsylvania School of Medicine found that women with Parkinson's appear to face a disadvantage: Women are ingrained with the ability to nature and care, so sometimes we go without care because we are so worried about everyone else. They're also much less likely than men to have caregivers, that's probably because women often outlive their most likely potential caregiver.

The Parkinson’s Foundation started the first issued patient-centered research agenda for women living with PD. This agenda was created to address the research gap found in the care and needs of women with PD. Together, we can address the needs of women with PD. We can win this battle!

Learn more about Women and Parkinson’s

Shirley Bealor drives 120 miles roundtrip to see her movement disorder specialist and 80 minutes roundtrip to her Parkinson’s disease (PD) support group.

More than 10 years ago Shirley and her partner, Elizabeth, visited Calvert County, MD, on a road trip and decided to move there. “Everything was going great,” Elizabeth said. They loved the bay, the seafood and the small-town feel. “Shirley then started having some tremors and tale-tale signs of PD.” It wasn’t long before she was diagnosed with Parkinson’s.

Shirlely’s research led her to the Georgetown Movement Disorders Program, a Center of Excellence, where she has received expert care from day one. This was also where Shirley had deep brain stimulation (DBS) surgery in December 2014.

While Shirley saw improvements after DBS, she still lives with a myriad of PD symptoms. The most visible is her worsening gait and posture. She uses a walker to maintain balance and support, but still falls. She finds other PD symptoms even more frustrating.

“My eyelids don’t blink enough thus I had to have plugs placed in my tear ducts to help maintain moisture,” Shirley said. “The invisible symptoms are actually the most frustrating. Food doesn’t move through the digestive system like it used to, swallowing, choking, speech changes, loss of bladder and bowel control – these are difficult to treat and make daily life especially challenging.

Shirley also has dyskinesia and lately, a decrease in energy, but she’s doesn’t let any of it slow her down.   

One day in the Georgetown doctor’s office Shirley and Elizabeth saw a poster for Moving Day® DC. They signed up and created Team Tenacity, the name stemming from Shirley’s stubbornness and determination to fight PD.

The retired principals put their pottery hobby to work. Shirley asked potters from across the nation for a pottery donation. They received more than 60 pieces of original, hand-made pottery. “The UPS man hated us,” Elizabeth said. Between pottery sales and donations they raised more than $10,000 for the fight against Parkinson’s.

This year Shirley doesn’t have as much energy and set out to do something less labor intensive. She applied for a NPF grant to create a local PD support group that belongs to the county. NPF agreed, and awarded Shirley the grant. After receiving NPF Parkinson’s educational booklets, Aware in Care kits and brochures, they set out. So far they have:

1. Applied and received NPF community grant to create the Calvert County PD Support Group.
2. Met with the Office of Aging, CEO and neurologist in the county hospital, all of which are spreading the word.
3. Searched for their Parkinson’s community by dividing the county into three sections and hosting meetings at each one. 
4. Fielded calls and met with people with PD and caregivers on a one-on-one basis to tell them about the support group.

They are now planning to find a central location to host meetings and build their base.

At the first group meeting, three women showed. Two had never met anyone else with Parkinson’s. “They were overwhelmed by having more information, hearing my story and meeting each other. They were almost in tears. It just made it worth everything,” Shirley said.

Shirley and Elizabeth have done their homework by participating in support groups in other counties to see what makes them successful. Their goal is to bring the people of Calvert County new PD resources, speech therapists and group exercise classes, but most importantly support and a sense of community.

Just because Shirley and Elizabeth are starting a support group doesn’t mean they have forgotten about Moving Day® DC. They are currently in the thick of Team Tenacity fundraising. “I like to see how many people are there, and that are just so dedicated – from the volunteers to the care partners who are there with loved ones. Their dedication assures and moves me,” Shirley said.

Shirley and Elizabeth want you to spread the word of the Calvert County PD Support group. For more information visit www.teamtenacity.org or call 410-257-1736. Learn more about Moving Day® DC or donate to Team Tenacity. 

My husband Jay and I have been married for more than 50 years. We’ve had a satisfying and happy life, raising our family in Southern California. I worked in graphic design and, later, became a marriage and family therapist, while Jay was a professor of art at several community colleges and painted all his life. He also curated art exhibitions as a profession.

In 2009, I noticed Jay wasn’t himself. It started when he stiffened and was unable to complete a kayak lesson I surprised him with for his birthday. Soon, I saw his hands were shaking and he told me that he had trouble concentrating at work. Jay made the decision to retire, a few years earlier than we both expected, because he felt too challenged by grading papers and maintaining his focus in class.

We sought medical advice and Jay was diagnosed with Parkinson’s disease. Not surprisingly, this diagnosis immediately changed our lives and altered the course of our future.

Cats and Strangers: Unexpected Symptoms of Parkinson’s Disease

Several years after his initial diagnosis, when his neurologist was trying to find the right combination of medications to reduce the impact of the typical motor symptoms of Parkinson’s disease, tremors and rigidity, Jay’s Parkinson’s progressed in an unexpected way. He started seeing black cats all over the house that were not really there.

He would tell me about seeing groups of people in the living room, particularly at night. A man he dubbed “Big Boy” slept in our bed and, sometimes, Jay felt he needed to physically confront him, which could be scary. On other days, he believed his brother was in the room with him, and they would talk the entire afternoon away.

Jay often has trouble recognizing me. He looks right at me and asks, “Where’s Diane?”

Beyond seeing things, Jay experiences delusions. When I’m working at the computer, he is paranoid that someone (not me) is using it to access our financial information. The overwhelming worry causes me frustration and, sometimes, I leave the room to end the discussion. Occasionally, Jay’s brother or our daughter can convince him that our money is safe.

I now know that Jay’s hallucinations and delusions are the tell-tale symptoms of Parkinson’s disease psychosis (PDP), a common non-motor aspect of Parkinson’s disease. When Jay’s neurologist told me that more than half of all patients develop these symptoms, I was very surprised because I expected only motor control issues.

Jay’s doctor was impressed that we even reported the delusions and hallucinations because most patients and their caregivers don’t, possibly because it’s embarrassing to confide that your partner is acting “crazy.” To some there is stigma associated with seeing things that aren’t there and believing things that aren’t true. And who would guess that psychosis is part of a motor disorder? I certainly didn’t, but I’m glad I talked to Jay’s doctor because now we work together to manage the condition as best we can.

Unfortunately, there are no FDA-approved treatment options right now for PDP, though one may be on the horizon.

Parkinson’s Disease Psychosis and Me

Parkinson’s disease psychosis isn’t just about the patient, but also about the person who cares for them. I worry about leaving Jay alone, even to run to the grocery store, because his hallucinations and delusions are increasing in frequency. He gets anxious when he’s alone, so I call him on my cell phone, frequently, to reassure him that I’ll be back shortly.

Once, I left for just an hour and on returning, I discovered that Jay was in the hospital. Convinced he was late for a party, he had left the house and tripped down our concrete steps, suffering deep abrasions. A neighbor called the paramedics, who took him to the ER, which was distressing and embarrassing for both of us.

In order to look after Jay, I’ve dramatically reduced the time I spend maintaining my therapy practice and I spend much less time on my hobbies of gardening, yoga, and playing the cello.

It’s hard to ask for help with PDP. My adult daughter speaks or texts with me every day and comes down from the Bay Area when she can, but I don’t want to burden her. There are a few support groups in the area, but it is often hard for me to attend. Even though my friends understand that Jay is not well, they really don’t understand how his hallucinations and delusions impact us.

That’s why I’m sharing my story. Parkinson’s disease psychosis is not just a burden for the patient, but also for the caregiver. I hope that by educating others about PDP, I can help people who are in the same situation realize they are not alone.

I look forward to the day when Jay and I can find better relief for this challenging condition.

Visit our care partner resources for more information on caring for someone with advanced stage PD