Nan Nop Corrigan took a long, winding and rewarding path before she found her true calling: caregiving.

Today, she is a professional caregiver in the Washington, D.C. area. She grew up in a small village in the Chumkuri District of Kampot Province in Cambodia during the Khmer Rouge regime and its aftermath in the 1970s. She and her family personally experienced extreme poverty and the atrocities of war. As a young woman, she moved to the city, found work with an American journalist and was later sponsored by a family to come to the U.S. She has since worked as an administrative assistant, dental assistant and caregiver for families.

This is Nan’s caregiving journey:

In my culture, we believe that helping people with health issues brings blessings. I have seen so many people go through difficult diseases. When I see that they need help, I jump in. I feel blessed because of my work. Caring for and loving people with Parkinson’s disease (PD), or any disease, is very important to my patients, their families and me.

I learned how to care for people with Parkinson’s on the job. With an elder care background, I learned basic health care skills through experience. Wanting to help people has always been in my nature, so I earned my Certified Nurse Assistant certificate and Dental Assistant certificate. I feel lucky to have a career where I can help those living with serious health issues.

My first homecare Parkinson’s patient was a man whose wife is a registered nurse. She taught me a lot about the disease. I learned how to care for him by patiently observing and communicating constantly. When caring for a person with Parkinson’s, you must be strong, intuitive and empathetic. It is important to be open to learning continuously, not only from doctors and other expert sources, but also from the patient. There are some common characteristics of Parkinson’s, but each person is unique, so you must focus on the person, not the disease.

Motivation and Care

My techniques for motivating a person with Parkinson’s are based on listening and observing.  Every person has different personality traits that are important to understand in order to succeed. These are the tips I’ve learned along the way:

• Stay positive. This is one of the most important things in caring for someone with Parkinson’s.  Being positive and happy is contagious and a good motivator. Laughter is good for everyone. We laugh together all the time.

• Use fun words. I stay positive by using words that are fun. For example, I don’t say “exercise,” I say, “come and play.” Never demand, instead ask encouragingly, “Do you want to come and play ball? It will be fun!” If he resists, don’t judge. Ask again later.

• Highlight the benefits. Help your loved one understand the reason for doing things and speak openly about what she or he can do and the effect it will have. Reminders like moving will make them feel better by increasing strength, ability and energy to think more clearly. If the struggle lies in taking medication, explain what each pill is for and how it makes you feel better. If it’s oral care, explain that one minute using the toothbrush is much better than one hour in the dentist’s chair.

• Be flexible. You may want to take your loved one to the gym, but they may not have the energy to go. People with Parkinson’s may have energy one moment and be tired the next. Adjust your plans to suit your loved one’s state of being in each situation. Be consistent with encouragement and exercise, yet flexible.

• Exercise together. Having a partner to share the activity with is more motivating. Stop or change the activity if you run in to anger or fatigue. The person will feel safer and more in control if you recognize how they feel.

• Start small. One of my patients had great success and was able to go from wheelchair, to walking, to running in a safe space. In a gym exercise studio, we started with standing up from a chair using a ballet bar as I supported his back. Keeping constant physical contact while the patient holds the bar makes him feel safe. Gradually, he was able to take small steps forward. Over time, challenged him to take longer steps by placing an exercise block on the floor in his path, so he could lift his foot over and take a larger step. Always talk to your doctor about taking on new exercises.

• Focus on nutrition. I try to keep an eating schedule to help patients feel comfortable. I make healthy meals with lots of fresh fruits, vegetables and lean meats. It is important to enjoy mealtime and the food you eat, so I am very patient during meals because it can be a slow process. I also think it’s important to give small healthy snacks, regardless of the time of day, because it helps with focus. Drink fluids throughout the day to stay hydrated, which can be a problem for people with Parkinson’s. I keep water glasses near favorite chairs.

• Move every day. As often as able, move to increase strength, mood and confidence. We complete little chores and errands like getting the mail or cooking together, which all help to improve motor skills. Don’t command, encourage.

• Try new games. Playing games and doing physical tasks in a fun, supportive environment gives the patient something to look forward to. Experiencing the accomplishment of increasing your physical skills can make you feel more inspired and optimistic. Try movement games, like tossing a soft ball while seated.

A Day in the Life

Every day is different and depends the person with PD’s state of mind and alertness. In the morning, I let my patient decide what he or she wants to do: get up now or later. Sleep is very important. Only get the patient out of bed when he is bright eyed, and his conversation makes sense. This is for the patient’s safety and yours, so that no one falls or is hurt.  Usually, I give the patient a small snack such as yogurt a mini bagel or juice in bed, so he has the energy to wake up and focus. 

After he’s up I make sure he has a shower and his teeth are brushed. I have found that keeping the patient fresh and clean every day helps him to feel better about himself. Keeping regular bathroom habits is important and requires patience and sensitivity to the person.

Daytime activities include as much movement as possible throughout the day, watching TV, movies and news programs that we can discuss together, listening to the patient’s favorite music, telling stories and making jokes.

Some people with PD experience confusion, accompanied with worry and sadness. If your loved one is confused and wants to find something, simply say, “OK,” and stay positive. If your loved one is hallucinating, encourage them to do a movement activity. With bad dreams, use a soft voice and call his/her name quietly, or sing softly. For everyone’s safety, don’t rush the patient to wake up right away. Gentle massage of the hands and/or head are effective.

Be careful with medications. Over-medication can easily occur, so it is very important to tell the doctor exactly what questions or concerns you have. Discuss everything with the doctor and immediate family. Pay attention to the doctor's instructions about the medication schedule and follow it. 

Caregiver Advice       

• Remember why you are there to help the person live as happily and comfortably as possible. Pay attention 100%. Do everything together. Don’t let them feel that they are left alone.
• Respect the person and the life they have lived and are now living. They are facing great challenges.
• Work with family members and communicate a lot to inspire confidence and help them feel included in the process and care of the patient.
• Be who you are. Remember, when you are happy, it makes those around you happy.

Hiring Outside Help
I recommend families look for professional caregivers who are caring, loving and flexible. Avoid changing staff a lot or having too many caregivers at one time because it can cause confusion and anger. Continuity is important and remember to work together so that everyone feels safe and confident.

Based on her extraordinary work as a caregiver, Nan inspired the son of a woman she cared for to start a charity that gives back to Nan’s Cambodian home village, where her mother and siblings still reside. Nan, along with friends and supporters of The Chelly Foundation have raised funds to build a library at the local high school, support clean water projects, along with other education and health programs that improve the lives of children.

Leo Narcisse Robichaud was born in St. Charles, New Brunswick. For twenty-two years he worked for BASF selling paint throughout Atlantic Canada and when that company restructured and moved its operations, he drove school bus until his retirement. “I loved to see the children get on the bus, they were always so happy and carefree.” In fact you see a bus in many of his paintings.

Now Leo deals with the effect of Parkinson's. That doesn't stop him from doing his folk art. It may slow him down but that just makes him more determined. On Friday the 3rd of July 2009 he opened his largest exhibit yet at the Moncton Library. The month long display is a wonderful opportunity to expose his work to the public. “I was so pleased with the number of people who showed up the first day.”

He is an amazing man and is truly blessed to have found art as a way of expression. His wife Marie-Mai is incredibly supportive and the light that guides him through the fog of Parkinson's. As we toured their gardens she was always smiling and laughing, she is such a joy to be around. They have two children, Rachel and Andre, as well as two grandchildren.
 
Leo began painting about six years ago around the same time he was diagnosed with PD. His first creation was a log cabin. He liked doing folk art and he hasn’t looked back. “I usually begin my paintings with the ocean and then imagine I am looking down from above”. Asked what effect his art work had on PD he replied, “When I paint I can block everything out and focus on what I am creating at that moment, its good therapy."

One of Leo's paintings is featured on the second edition of note cards recently released by the Greater Moncton Parkinson’s Support Group.  A sample of his work is also on display at Moncton City Hall.

View his exhibit opening on YouTube.

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Submitted by Bill Trewin, Moncton, New Brunswick

Roberta Crooks’ hands were shaking so badly she could barely use the keyboard while at her job as a business analyst one summer day in 2011. Her doctor quickly referred her to a neurologist who diagnosed her with Parkinson’s disease (PD). Roberta lives in a small, rural Kansas town with a population of 2,000 people, but the passion and perseverance she shows when serving the Parkinson’s community is anything but small. 

Roberta’s neurologist referred her to the nearest Parkinson’s Foundation Center of Excellence at the University of Kansas Medical Center. From there, she continued to educate herself on the benefits of exercise and knew that movement was going to be an important part of her toolkit to fight PD.  

She continued to work out, but with no specific Parkinson’s focus. She happened to see a local news program on Rock Steady Boxing in the Kansas City area and decided to try it. The class was nearly 40 miles from home, but worth the drive. On day one she found camaraderie with others in the Parkinson’s community. Class by class they would gradually open up and share stories about their disease, treatment and coping strategies. Roberta had no experience with support groups but suddenly knew she needed to start one in her own community. 

Roberta launched a support group in January 2018, targeting a four-county area, through a true grassroots awareness effort of posting flyers in libraries, senior communities, doctors’ offices and post offices. The local library offered a monthly meeting space and some members to assist with planning. 

Roberta is passionate about securing speakers on relevant topics to ensure her community has the knowledge and resources they need. The Wellsville KS Parkinson’s Support Group continues to grow, drawing from this rural community with significant interest in learning how to live a better life with Parkinson’s.

In addition to providing a support group facilitator guide and educational resources, the Parkinson’s Foundation Heartland Chapter also recently presented to the group. “In the Parkinson’s Foundation support group guide I read that some support groups will vary their program and instead meet for coffee or to exercise. That gave me the original idea to get our group exercising together weekly,” Roberta said.   

With the seed planted, Roberta embarked on an effort to help her fellow support group members find feasible options for Parkinson’s friendly exercises, in a nearby area for those who can’t travel long distances. Roberta reached out to local recreation centers and secured a community facility for members of her group to work on their balance and mobility through exercise. She also connected with the local community college to engage the occupational therapy instructor and students to help support exercise classes this summer.

Roberta’s primary goal is to establish regular exercise classes for her local PD community and ensure that the classes are sustained past the day she no longer helps lead them, but she doesn’t see that day happening soon. Her resourcefulness and commitment to her Parkinson’s community is truly an inspiration.

Interested in starting a support group in your community?
Start with our Support Group Guide

My name is Ideliza Hernandez and I am a caregiver for my dad Rey Gonzalez. Dad has had Parkinson's disease for more than 25 years.

What we thought was a simple leg movement as he enjoyed his music, resulted in a Parkinson’s diagnosis. The tremors were getting worse, but my mother, Idali Gonzalez, had to keep going to work. It came to a point when he could not be left alone.

It is not easy to watch the changes he's gone through and continues to go through. To help him walk, to see his pain, for him not to be able to do much on his own is a reality he had to accept. The disease changed his life, as well as ours.

Dad had deep brain stimulation (DBS) surgery with hopes that most of the tremors would be controlled. Sadly, there were setbacks. He caught a bacterium that was treated at home via IV three times a day for a year. Then, he had to go through part of the surgery again. The tremors persisted.

A few years later, he tried DBS again, but not much luck. Today, he takes medications every two to three hours.

For the past eight years, I've fundraised in his honor, for my godmother, Maggie Gonzalez, and in honor of our dear friends who have Parkinson's. The goal is to help find a cure and the support we have received throughout the past eight years has been incredible.

I host a Facebook page titled "Caregivers Strength,” where I post daily inspirational quotes to show others that we are not alone — that together we can continue strong for those we care for.

My daughter, Netanya Hernandez, has her own Parkinson's page on Facebook titled, "My Grandpa Rey has Parkinson's Disease." She's his mini caregiver that has seen his changes in her 13 years.

Here at home, we are a team. We help dad move forward and let him know that he's not alone. As a caregiver, it's not easy to face Parkinson's disease. I have to keep myself strong and maintain my faith. No one wants to see the ones we love hurt. I make sacrifices, but it's to make sure he's well taken care of. I have my melt downs, but I continue moving forward with him, and for him. I'll treasure his good days and reassure him that if he continues to be strong he will get more of those good days.

Dad will always be my super dad, my hero, and my mentor. I will not stop my mission to help find a cure and to help all those fighting this disease to stay strong.

I want to be able to see Dad smile again and have him say, “WE DID IT!”

For caregiver resources visit Parkinson.org/Caregivers

I was first diagnosed with Parkinson’s in 2006 at the age of 44.  At the time, I had several undiagnosed health issues, but was somehow able to “power through” it all to a keep alive a rapidly rising career—and no matter what I said, career is really what was most important to me.

I don’t mean to minimize my family, but when I got the diagnosis of Parkinson’s, I had to look myself in the mirror and answer one key question:  “What was really the most important thing in my life?”  I came to find out that my heavy focus on “career” had been way off target—what was most important was “family” and “relationships.”  I went into a period of reassessing all aspects of my life to refocus on these key areas of my life.

I had to take disability retirement from my career toward the end of 2006, given my growing inability to multi-task, make decisions, attend meetings without getting up every five minutes to stretch or relieve my painful spasms, and basically just not being able to do all that was required of me. THAT was a very tough decision for someone with my focus at the time.

But once I looked myself in the mirror, and put my career on the back burner, I decided to focus on my family, friends, health, and hobbies.  In 2008, we went on a long awaited vacation to New York City (see picture—I am the one male in the picture, and my wife Renee and daughters Alyssa (17) and Niki (14) represent the rest of my family).  It was a great, albeit active and tiring, vacation.

And as of 2009, I took the next step of my journey with Parkinson’s by undertaking Deep Brain Stimulation Surgery.  It was a tough decision to make, but I really had no choice—the amount of medication I had to take to control my symptoms was getting higher than my doctors were comfortable with. 

Bottom line, the surgery was successful, and my first programming session (which is all I have had as of the time of this note) was very successful as well.  The procedure has allowed me to virtually eliminate my tremor, and greatly reduce my muscle rigidity.  And who was there to support me through this part of my journey—family and friends, the most important part of my life.

The key things I would tell anyone with Parkinson’s are as follows:

1. Try to find the “gift” hidden in the fact you have this horrible disease—for me, it was a refocusing of my life on what was most important
2. Understand that Parkinson’s is not a “death sentence”, even though it is chronically progressive—there are lots of things to accomplish on your journey, and the symptoms and problems of Parkinson’s are just things to manage through
3. Parkinson’s is in fact a “journey”—a path you start down with your initial diagnosis, but one that continues as you evaluate the various alternatives available to you, and one that further continues based on the decisions you make….. “decisions YOU make”…… the disease doesn’t have to make your decisions for you.

(In a Sopia Patrillo voice) Picture it. Park Ridge, IL. 2011. A young, skinny, attractive gay man notices some odd shaking happening while holding the church bulletin one Sunday morning. He whispers to his husband, “check out my thumb,” as it shakes ever so slightly. He doesn’t make too much out of it, but deep down he knew what it was because both his paternal grandparents and great uncle had the same issue. That young, very good-looking man in this story is me. 

When I first started to notice the shaking in my thumb, it was sporadic. I didn’t worry about it too much. Then, it started to affect my whole hand. What was an every-once-in-a-while thing became constant. I started meeting with a neurologist by my house trying various forms of medication. Eventually normal tasks like buttoning my shirt and pants became a frustrating ordeal. By the time I was diagnosed at 37, I was trying to plan for the future with long term care insurance and life insurance – both were ultimately denied. 

By 40, the tremors spread to my whole arm and down to my right foot – my driving foot. I thought that if I didn’t do something more drastic soon, I would end up on disability within five years.

I found out I was a good candidate for Deep Brain Stimulation (DBS) surgery. I signed up and didn’t want to know any details. My eyes were on the prize.

My device was turned on four weeks following surgery. Within two months, I was 90% better. Most things became easier. I can now button my sleeves with ease. Playing the piano and writing remain a struggle but are still better than before. 

My support system is amazing. I have incredible family, friends, and coworkers, and have gained a new group of friends through Parkinson's support groups.

I try not to take life too seriously. I’ll be the first to make fun of myself for spilling food on my shirt or soup on the person next to me.

My advice for anyone newly diagnosed is to stay active and involved with your hobbies and friends.

Tell everyone you meet about your Parkinson’s. At first, I didn’t want people to think I was shaking because I was one drugs. Then, I found that many people are going through similar struggles.

Because I told the reading specialist at the school where I teach, I found a neurologist at Rush Hospital, a Parkinson’s Foundation Center of Excellence. It’s also where I had DBS.

Sign up for the studies. The more people who volunteer for these, the sooner we’ll find a cure. If it doesn’t help us, it might help future generations. 

Try not to compare yourself to others with this disease. Everyone is so different.

And, look for the good. If you can’t, find the people who do. 

My journey with Parkinson’s disease (PD) started when I was a young combat Marine in the dense jungles of Vietnam. We could hear the hum of the low flying planes above the insect drone and see the long vapor trails that followed them. The planes were delivering death and illness by dispensing the herbicidal poison innocuously code named Agent Orange.

Agent Orange is one of the most toxic substances on earth because it contains dioxin toxin made by Monsanto; remember their ironic, iconic slogan: ‘better living through chemistry?’ The results of my exposure to this toxin would become apparent decades later. 

Agent Orange initiated a progression of brain-cell death that took 40 years to manifest as PD starting with tremors in my left hand and foot. By the time I climbed out of denial, I had more symptoms.

I finally went to the neurologist who observed me shuffling down the hall and said, “You have Parkinson’s.” Because my exposure to Agent Orange was service connected and presumably the cause of my PD, I was able to get care from the VA. I was very down about the diagnosis. Life was gray and great chunks of time went missing.

After a couple years of depression the colors squeezed out of every moment, I picked myself up and started to move. I took charge of my PD and, in addition to my medication, I started a regimen of alternative treatments: Tai Chi for balance, yoga and acupuncture for stiffness, and biking and walking for general health. Meditation put me back in touch with the colors and music of the world. My intention was to slow the inevitable symptom progression of PD, a chronic, degenerative, and brutal disease. I just wanted to feel normal. To do so meant even more radical action.

I went to India for a detoxifying cleanse. The protocol used there was ancient. PD-like symptoms were recognized in India more than a millennium ago. This was a very difficult trip but I desperately wanted to improve the quality of my life.

Five years later I was not improved, nor was I terribly worse and I still was not on L-Dopa. In a counterintuitive way this was progress. Admittedly this is an unscientific conclusion, but I did have enough energy to write a book about my war experience: “A Hellish Place of Angels.” With the medicine and the alternative treatments, my health seemed to degenerate at a slower rate. Now I have more good days than bad days.

The PD prevents me from ever returning to my previously fast paced life. Perhaps this is for the best. 

In my experience the varied treatments played a big role in my quest to approach feeling normal again even if it is a new normal.

Veterans who develop Parkinson’s disease and were exposed to Agent Orange or other herbicides during military service are eligible to receive VA healthcare (including a free Agent Orange registry health exam) and disability compensation.

“I keep active so I can keep up with my son,” said Tyaisha Blount-Dillon, a dedicated mom of 8-year-old William-Wallace and wife who is living with Young-Onset Parkinson’s disease. “My husband and I enjoy going to my son’s baseball games. I have a goal that if he is playing baseball in college, I am going to attend without using any assistive devices. I don't allow myself to imagine anything else.”

In the near decade since Tyaisha was diagnosed at age 35, her determination to live a long, healthy life with Parkinson’s disease (PD) has only strengthened. Today, Tyaisha helps and listens to others living with the disease, because she knows just how difficult getting a diagnosis can be. She hopes that her appearance in “Better Lives. Together.” the Parkinson’s Foundation public service announcement (PSA) will spread critically needed awareness to the millions of people who live with or love someone with PD.

“I hope that this video really informs everybody because when I didn't have a diagnosis is when I most used the Parkinson's Foundation,” said Tyaisha. “The website offers so much information, and so many resources, like the Helpline, that are so empowering.”

When Tyaisha was officially diagnosed in 2013, she had already forged a proactive path toward better health. She had spent nearly 10 years searching in vain for the cause of her debilitating symptoms, including extreme fatigue and painful muscle cramps (which she later found out was a form of dystonia common in Young-Onset PD). Her age and gender were not considered typical of PD, and as a Black woman experiencing bias in healthcare, finding proper medical care was that much more challenging.

“I was very athletic, and I still am, so my physique did not look like someone who was ill,” said Tyaisha. “Doctors would tell me that I wasn't sick, but why would I tell them I was having trouble walking if nothing was wrong? Doctors did not believe me, and I could not find any medical support.”

Tyaisha did her best to push through her mounting pain and fatigue. Ultimately, after experiencing a heartbreaking pregnancy loss prior to her pregnancy with William-Wallace, she knew she had to be even more aggressive in finding out what was wrong.

“There was a point in 2010 where I could barely walk. I was lethargic and I didn’t know what was wrong,” said Tyaisha. “My brain was not coming together properly with my body.”

Relying on her research and what she remembered from her physical therapy courses in college, Tyaisha designed an exercise regimen for herself. She hired a personal trainer and set out to eat healthier. “I was walking better and getting stronger,” she said.

She became pregnant again, unwavering in her dream of being a healthy, active and involved mom. “I kind of had to put myself in a position to fight, because I knew this was not the end for me,” she said.

Tyaisha’s pregnancy with William Wallace also created a sense of urgency for her healthcare team to find a diagnosis. She eventually found a doctor she trusted. “He had the patience and the understanding I was looking for in a provider,” said Tyaisha.

After undergoing several neurological tests, Tyaisha’s care team finally arrived at a Parkinson’s diagnosis. With a newly prescribed course of medications, her health continued to improve.

She gave birth to a healthy son, William-Wallace, who follows his mom’s active example. “I demonstrate to him that every day is a new day,” she said. “If I had a bad day yesterday, I forget about it and start over.”

While Tyaisha’s journey with PD has included ups and downs, she has continued to find new ways to adapt. She shifted from a high-stress full time job to self-employment. She underwent deep brain stimulation (DBS) surgery to help control her movement symptoms when her son was just six years old. She continues to stay active every day, whether gardening, working out with her trainer or playing with her son.

"Parkinson’s stretches you — it can force you to do things that you never thought you would be able to do,” said Tyaisha. “You just need to develop ways to fight through it. People may feel that they cannot improve, but I am living proof that you can.”

Watch our “Better Lives. Together.” public service announcement