I first met Jon Lessin in October of 2012. Jon is an accomplished doctor, published author, father, husband, cyclist, yogi, jokester and now, addicted climber. Jon also has Parkinson's disease (PD).

When Jon started taking lessons with me, I knew very little about PD other than a couple of generalized symptoms. Working with Jon was a huge learning experience and he seemed eager to answer every little question I asked.

With the help of Sportrock and Jon, we started a free climbing session for people with Parkinson’s disease and have grown the group tremendously. Sportrock Climbing Centers has even partnered with the capital area’s PFNCA to undertake the first-ever study in the U.S. on Parkinson’s and climbing with George Washington University. You can read the results of that study here: Impact of Rock Climbing on Complex Tasks in Persons with Parkinson’s Disease.

I have devoted much of my time to learning the ins and outs of this disease and the Parkinson’s Foundation website is where I started my online educational journey.

I believe that rock climbing is an amazing activity for those living with PD. While there is no cure for this neurodegenerative disease, unquestionably helps slow the progress, gives relief to some of the symptoms and creates a social network. There is much debate as to which exercise is the absolute best for Parkinson’s but working at a high level of intensity is fairly universal in its importance.

According to Lisa Ebb, a movement disorder Physical Therapist who has joined in climbing with a couple of the climbers, “Challenge and variation are the two most important principles of exercise in Parkinson’s disease.

Not only does climbing force you to work at a high level, but it also challenges participants with varied movements, repetitive movements, big dynamic movements, small, controlled movements as well as flexibility, balance and stability. Perhaps most importantly though, are the cognitive skills acquired through climbing and neuroplasticity changes that can occur.

While I do not have PD myself, I have learned through many of my friends at Sportrock that being proactive in your treatment is paramount. I have seen firsthand what exercising regularly, eating the right foods, eliminating stress and keeping a good support system can do for you over the years. I am a firm believer in whatever exercise program you can stick with is the best one for you.

For anyone newly diagnosed, let the beautiful words of Ijeoma Umebinyuo be your mantra.

Find a Parkinson’s-tailored exercise class near you at Parkinson.org/InYourArea or call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).

I was diagnosed with Parkinson's disease (PD) at 45. I went in for a simple treatment for a tremor in my hand, but that led to series of investigations. I'm not too sure I was ready to accept the diagnosis, but my husband and son on the other hand were supportive from day one and undoubtedly have been my pillar of strength. They keep me motivated and feeling appreciated.

I was in denial for a couple of years. I was not so comfortable talking about it and tried to keep it under wraps. One fine day, I woke up with a different perspective towards life. I trained my mind to accept that sooner or later my ability to work or mobility will get affected. Why not live life fully?

All this did not happen overnight. It required every ounce of courage to overcome my inhibitions. That's actually when I started loving myself more than ever before. The moment you accept yourself half the battle is won.

Age, I believe, is just a number. I enjoy doing small things and derive happiness out of it. This makes me kid at heart but not immature. Embracing what life has to offer in a fearless manner, I decided to be unstoppable. That's the new ME. To live, love and lead a carefree life; to continue to ‘be me’ in my own unique way.

It's not easy to wear a smile and battle the chaos inside of me at the same time. I have a busy lifestyle working full-time for a diplomatic mission in London. After work, I have my hobbies to pursue. Though PD hasn't affected my work schedule so far, it definitely has affected my reflex actions, so, planning work is a key factor for me.

As brutal as it sounds, the fact is that we all know death is certain and life is uncertain. Fear doesn't help; it just stops life. Why stop living life before we actually do?

So, my journey of daring adventures started. I ran a 10K to beat cancer and raise funds for Cancer Research UK back in 2016. For me it was not only to crush cancer with my every step, but it was also to crush all those dead cells inside me that trapped my confidence that I wanted to set free.

In 2018, I did my first zipline and then, again, in Dubai the following year. That same year (2019), I went skydiving in Dubai from 13,000 feet. All of this gave me the confidence to fight back. I firmly believe there's nothing that can stop you as long as you firmly believe in yourself.

I took part in Shaimak Dawar Summer Funk stage dance - performed to the moves of Govinda - at Wembley Auditorium in 2017, which helped me fight my anxiety.

This past year wasn't easy. Lockdown took toll on all of us. Still, I didn't let it affect my morale. I joined online sketching classes that helped me strengthen my motor skills.

I always remind myself that faith is bigger than fear and that helps me move forward.

During the recent lockdown, I started my culinary YouTube channel by the name of Deez Culinary Delights. I am currently working on another culinary project that keeps me occupied apart from my regular full-time job.

All these activities were never on my bucket list, but I have decided to live life with positivity and optimism. I am a warrior and my struggle to find opportunities amongst difficulties continues. That is precisely what I call a blessing in disguise, and I'm not going to give up so easily.

If you have questions about Parkinson's disease symptoms, call our free Helpline at 1-800-4PD-INFO (473-4636).

Jay, whose infantry service in Vietnam exposed him to Agent Orange, talks about the importance of receiving expert care for his PD and the availability of that care for veterans, including medications, through the Veterans Health Administration. He also points out the outstanding resources available through the Parkinson’s Foundation and the key role exercise plays in Parkinson’s care.

Jay has been an advocate for Parkinson’s patient care and research since 2012 and was the Parkinson’s Foundation 2020 Volunteer of the Year. He currently serves as an Aware in Care Ambassador, Moving Day Captain and is also a support group leader.

The VA estimates that 110,000 veterans have Parkinson’s disease. If you or your loved are a veteran living with Parkinson's, check out our resources for Veterans. You are not alone.

A Physical Therapist specializing in Parkinson’s disease (PD) changed … saved my life as I know it.

I was diagnosed with PD a year ago after experiencing symptoms for a couple of years. I am lucky. I seem to be on a slow progression, currently on two medications, both agonists.

From a time before my formal diagnosis, I have understood that exercise is critically important therapy. I was exercising more, but humans are not good at connecting future consequences with immediate actions. I was thinking of exercise today as an investment in a delay in being wheelchair-bound in 15 to 20 years. 

Then I got an email introducing me to the MIND (Movement Initiative for the Newly Diagnosed) program, a Parkinson’s Foundation community grant recipient. The initial evaluation and therapy sessions were at no cost, covered by a grant. The email came from Valerie Johnson, PT, DPT, a physical therapist specializing in PD. I had nothing to lose. There were still spots open under the grant, so I signed up. It was perhaps the best decision of my life.

Dr. Johnson through her practice, Balance Therapy LLC, proved to be fantastic in many ways. She is extremely knowledgeable regarding movement exercises specifically useful for Parkinson’s. Like all great physical therapists, Dr. Johnson is a great motivator and a hard taskmaster.

But the most important gift she gave me was a different understanding, on an emotional level, of the value and importance of the exercise in which she was training me. I had many questions regarding the specific benefits of the individual movements and why and how they provided those benefits. She answered those questions in an accessible and useful way. For instance, she summarized that she was “retraining my brain.”

Dr. Johnson’s credibility made her persuasive, and she persuaded me that there were both long-term and immediate short-term benefits to these exercises. The short-term perspective is critically important because it is much more likely to motive action today. Having been “converted” to believing in the benefits of physical therapy across the arc of my Parkinson’s progression, I threw myself into learning the exercises and improving my form, which is critically important.

The results have been immediate. I feel better (more free in my movements) than I have since my diagnosis and will be discussing dropping one of my medications at my next neurological appointment. I cannot be strong enough in my recommendation to seek out physical therapy. The education in exercise techniques is immensely valuable. The gift of a transformed mindset regarding real engagement in that exercise is priceless.

For a physical therapist referral or to learn more, call our Helpline at 1-800-4PD-INFO (473-4636).

It was in my teen’s when I was diagnosed with Juvenile Rheumatoid Arthritis, in my 20’s Colon Cancer and in my 30’s Parkinson’s disease. I was used to having a medical challenged life, but I had no way to anticipate what challenges were ahead of me. Parkinson’s impacts so many facets of your life.

I can remember the day that my fear became a reality. I sat in an uncomfortable flower-print chair in my neurologist's office. The nurses in the front office were talking to each other about what type of sandwiches they would order for lunch. The background was filled with traces of annoying soft-rock music and an overpowering smell of coffee. It was apparent that someone put much effort into creating a calm and relaxing environment, but at the moment it felt as irritating as wearing an itchy sweater in the desert.

A nurse came into the waiting area and called my name. I followed the nurse as she guided me to the exam room. Hearing the diagnosis — "You have Parkinson's disease. There is no cure, and you will struggle with this the rest of your life." — was like being punched in the stomach. I felt cheated out of a life that held so much promise. I looked down at my rigid left arm, resting lifeless on my lap. It felt alien. This was not the same arm that helped me make the cheerleading squad. These were not the fingers that I used to play the flute in my high school band.

After the shock wore off from learning about my neurological decline. I knew I had to stop thinking about “Why me?” but shift my way of viewing my diagnosis to “Try me.” I would use the same method of coping that I had so heavily relied on with past medical challenges. I focused on being happy, taking it one day at a time and use humor to get me though the difficult times.

I thought about what type of support I saw that was missing in the community, and what I would find useful being a patient myself. Just like many other illnesses, the mental health aspect was completely neglected. It was just not spoken about. No one asked me how I was doing emotionally, and no referrals were offered to seek support. It appeared that I was to just handle any emotional pain that I had on my own. Every medical professional was phenomenal in their area of expertise, but no one was looking at the continuation of care.

I completed my graduate program and became a licensed Marital and Family Therapist in the state of California. Then I got hired by my neurologist’s office to work with their Parkinson’s patients. I partner with individuals, couples and families who are faced with health challenges and chronic pain. It’s a unique experience to see both perspectives from being a patient and also a clinician. In 2013, I extended my reach into the world of Parkinson’s by launching The Perky Parkie Blog, with my sense of humor, I share stories of life with Parkinson’s disease. It’s a great feeling to know that my blog has led to interactions between my readers and provided a few giggles... I mean, really, you’ve gotta be able to laugh at yourself.

After 11 years of having Parkinson’s disease, I can’t really remember what my life was like without it. All the people who I have met, all the friends I’ve made who have become a part of my wolfpack, I wouldn’t change it for the world. I’m not saying my life is easy, not even close, but without Parkinson’s, my life wouldn’t have meaning.

It is never too early or late to build your care team to help you manage Parkinson’s disease.
Learn more about building your interdisciplinary care team

My dad, John Morton, was a college athlete and maintained a very active lifestyle. He was a swimmer, golfer, runner, biker in addition to a very successful lawyer. He loved continuing education and after his Parkinson’s disease (PD) diagnosis, devoted endless hours to researching and learning about different treatments, studies and activities related to Parkinson’s. He even attended the 2018 Parkinson’s Policy Forum in Washington D.C. in an effort to learn more about PD and share his story.

His PD diagnosis came in 2008 after a wrist injury in a bike accident while training for a full marathon. The tremors began and so did his progression. After several years he underwent Deep Brain Stimulation (DBS) surgery. While the surgery initially slowed his progression, the disease began to take control and more symptoms began occurring including gate issues and many falls. Unfortunately, he passed away after a fall last spring as a result of Parkinson’s.

In the last few months for my dad, I was able to experience his progression firsthand as my parents moved to Texas to be closer to family (including myself). As his wife and main caregiver, my mom played an integral part in my dad’s health and helping him get the right treatments and help he needed. As a result, he was able to maintain an active lifestyle as best he could ― continuing to swim when he could and play golf as much as possible.

Throughout the 11 years he lived with Parkinson’s, my dad never let PD define who he was. He was incredibly smart and motivated me and my sisters to always strive for the best. His inquisitive nature and motivating personality moved me to continue learning about Parkinson’s and contribute where I could to the ongoing research and development, including hosting a small, local “Pedal for a Purpose” event to raise money for the Parkinson’s Foundation in 2017.

This disease is not easy for anyone involved ― the person living with it, family members or caregivers ― and my dad’s passing really put that into perspective. There is so much additional research and information we need to find a cure for this terrible disease and I hope that this can be done sooner rather than later.

Raise Parkinson's awareness on Instagram with social media GIFs that Natalie donated to our digital PD community.

Host a fundraising and awareness event at Parkinson.org/Champions

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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Please note that the copyright for these pieces belongs to the people who created them. They may not be reproduced without their permission. If you would like to reproduce a piece, please contact the Parkinson's Foundation and we will forward your request to the creator of the piece.

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