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).
Back in 2007, I noticed that my right foot would twitch occasionally when I was writing. I would literally shake it off by shaking my hand and foot. It would disappear and then show up again after a few weeks. This went on for a while, but I just ignored it. Several months later, I fell and broke the tibia on my left leg. The twitch came back, prompting a trip to my doctor.
Within the next few months, I was diagnosed with very early, barely there breast cancer along with a Parkinson’s-like tremor. Needless to say, the breast cancer had priority and when I came out of my radiation fog six months later, it was time to switch to a movement disorder specialist who changed my life. She spent time with me to answer my questions and gave me the information that I needed. Most important of all, we bonded because of yoga. She was clearly the right doctor for me.
Still waiting for the shock of diagnosis to wear off, I hid my shaking hand and foot as much as possible, refusing to come to terms with it. For five years I avoided any Parkinson’s disease (PD) conferences, support groups and PD specific exercise classes. I was reading as much as I could find on the internet, which at the time there was very little, and became fairly knowledgeable about PD. Although I was still in denial, others saw what was happening and I started getting requests to speak to people who were newly diagnosed with Parkinson’s.
My husband and I went to a local Parkinson’s conference and that was the turning point for me. There I found that there were a lot of other people like me who were living well with PD. Then my real PD journey began.
I started my blog, Twitchy Woman, My Adventures with Parkinson’s Disease several months later because I thought it would be an easier way to share what I had learned with the newly diagnosed. I found a few other PD bloggers, one of whom wrote about the Parkinson’s Foundation’s Women and PD conference. This was an opportunity that I could not miss, so I applied and was one of the 25 women accepted! It was an amazing experience that led to more involvement with the organization. The Parkinson’s Foundation encouraged me to attend the World Parkinson Congress in Portland.
Soon after, the Foundation asked me to be the patient lead on Women & PD TALK, a groundbreaking study which led to the report: Women and Parkinson’s: Closing the Gender Gap in Research and Care, A patient-centered agenda for change. Because of my experiences with the Foundation, I have had many opportunities to advocate for those of us with Parkinson’s. I continue to write my blog more than five years later, which has been recognized as a top Parkinson’s blog on numerous lists. I went to Kyoto, Japan, last year for the World Parkinson Congress as an official conference blogger, had a poster on display and met many of my readers, as well as patient leaders from around the world.
The Women & PD initiative charged us to do something in our local community. I started a group for women that was more of a social/educational group than a support group in Los Angeles, CA. Last March, due to the pandemic, I took the program on-line with Zoom. Sunday Mornings with Twitchy Women started on March 22 with nine women. We have met every two weeks on Sunday mornings and now have more than 200 women who have participated, some from as far away as the UK and New Zealand!
I have spent many years as a volunteer for different organizations. I am fortunate that my experience prepared me well to do my work with the Parkinson’s Foundation. In addition, my husband, Joel and I have been able to travel to many places around the world since my diagnosis with no difficulty due to PD. We have three daughters and four wonderful adorable grandchildren, two here in Los Angles, and two in Chicago, who are the loves of our lives.
My husband and my doctors try to encourage me to slow down, but I find the ongoing activity energizing. I have met so many wonderful people with PD, some of whom have become good friends. I have had opportunities to do things I never thought I could or would do. Clearly, living with Parkinson’s has given me a new beginning at a time in my life when there seemed to be no future.
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.
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.
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.
I met Rose when she joined our Parkinson’s support group a few years ago. I liked her immediately. She moved from New Orleans, LA after losing everything during hurricane Katrina. She had a strong “whiskey tenor” voice, was a long-term smoker and had a fabulous, loud laugh. Somehow, we had the same sense of humor and really hit it off.
Rose and I started meeting for lunch occasionally and I discovered that Parkinson’s was really hard for her. I remember her telling me once that she could no longer put on her “full face,” meaning her makeup, and because of this she just didn’t feel like herself anymore. It didn’t stop her from wearing cute outfits, like distressed jeans with a T-shirt or bright shirts, scarves and of course, a hat with everything! She also colored her hair a brilliant hue of red, which just suited her personality perfectly. She was an outrageous, fun-loving spirit!
As time went on, I noticed that Rose was becoming more depressed about her Parkinson’s. She dwelled on the things she could no longer do in life, things that were important to her. Then she had a heart attack in June 2018 and her health deteriorated further. She was on even more medications, now for her heart. She continued to struggle but wouldn’t accept help. She was very independent! I suggested getting different depression meds, but trying not to be intrusive, I never checked to see if she had done this. Rose was also a very private person.
Then the devastating news came. Rose committed suicide! All of us in our Parkinson’s support group and her Rock Steady Boxing group were shocked. How had we failed to see that she was “drowning,” and that she needed more support? Rose lived alone and had no care partner, although her daughter and grandchildren checked in on her frequently. But they all had their own lives, as did all of us in the PD community.
So, Rose left us. We no longer hear her loud laugh or get so see her sweet, lovely smile. She is gone and we are left wondering “what could we have done?” How could we have not seen that she needed more help? What would have made a difference?
During September, the Parkinson’s Foundation is shining a spotlight on Parkinson’s and suicide. More needs to be done, especially for those living alone with Parkinson’s! I hope we find ways to help so others don’t have to feel the loss, the pain and the constant questioning that a suicide leaves behind.
Please, if you are reading this and are feeling like Parkinson’s is more than you can bear, that it’s not worth living, and that you have nothing left to live for, PLEASE tell someone NOW, get help NOW, call a suicide prevention number NOW, because life is too precious and you will leave a HUGE HOLE in the lives of all those who know and love you!
My husband and I believe that one of the great “perks” of having Parkinson’s in our lives is that we have had the opportunity to get to know so many amazing people, like Rose, who live with the daily struggle of this disease. They are some of the nicest, friendliest, sweetest folks you can ever meet. We really feel blessed to have our Parkinson’s community!
On March 20, the Parkinson’s Foundation in collaboration with the U.S. Department of Veterans Affairs Ralph H. Johnson VA Medical Center, hosted a live online event, “Veterans and Parkinson’s: What You Need to Know.” More than 1,100 veterans and family members from all 50 states and several countries registered to learn more about managing PD. Four panels of experts from the VA and the Parkinson’s Foundation addressed key issues in treatment, care, mental health and available resources and benefits.
These experts discussed how Parkinson’s is treated in the veteran community and highlighted some of the unique factors that make veterans more at risk of not only developing Parkinson’s, but also of receiving later diagnoses and dealing with more complicated mental health challenges.
“A number of conditions that veterans are more likely to experience such as traumatic events, significant head injury, combat deployment and Agent Orange exposure placed them at greater risk of developing Parkinson’s,” said Dr. Travis Turner from the Medical University of South Carolina – a Parkinson’s Foundation Center of Excellence.
“Having spent a number of years working as a neuropsychologist in the VA health care system, I have observed some unique characteristics in the way that PD presents in veterans," said Dr. Turner. "For example, veterans are often less likely to seek medical help for subtle changes in their health. This means that when we see them the disease is often a bit more progressed before it is formally diagnosed and treated. Unfortunately, this means that there will be an extended period of diminished quality of life before we can get them the help that they need. However, with improving quality of care through the VA, access to specialized medical treatment and building patient trust, this is becoming less of an issue.”
Throughout the program, participants heard from experts and had an opportunity to ask questions about PD progression, treatment, as well as accessing specialized care. In addition to hearing from experts, we also heard from three veterans who are currently living with PD. Here’s what they had to say:
How did you manage your Parkinson's diagnosis as a husband and a father on active duty?
Eric Arrington, Army
“I just found out as much as I could about Parkinson’s and dug deep. I started preparing myself for the medical board and, believe it or not, I passed the medical board for the second time in my military career. A year later, I dropped my paperwork. I made sure my wife had everything that she needed and that she understood more about PD. Toward the end of his high school career, I made sure my son had opportunities to participate in different things he wanted to do and made sure my disease didn’t have a negative impact on my family.”
Why was it so important to you to move quickly and to make sure that you see a Parkinson’s specialist?
Jay Phillips, Army
“My first diagnosis came from a regular neurologist, not a movement disorder specialist, who immediately started me on carbidopa/levodopa. As a treatment, that's what we call the gold standard drug. But I learned about three months after that, when I got a second opinion, that it perhaps wasn't the best thing to have started me off on right away because my tremors were minimal and because of the possibility of long-term side effects. So, I decided to join a support group early on where I was exposed to a lot of other patients and I could see how complicated PD is and how everyone is taking different medications for different symptoms. At that point, I decided to seek out expert care.”
As a field hospital nurse in Vietnam, you had many exposures to Agent Orange. When your hand started shaking decades later, did you think it was related to your military service?
Lou Eisenbrandt, Army
“Absolutely not. As a matter of fact, with my nursing background, I suppose I should have been aware that something was going on. But when you go to nursing school, you really don't talk about Parkinson’s very much. Years later when I was looking for information online a lightbulb went off as I read about military exposure to Agent Orange and Parkinson’s. Most of my time in the field was spent in an emergency room where we got guys straight from field. The first thing we did was cut off their fatigues to assess the injuries. Lots of them were in the path of spraying for Agent Orange.”
What went through your mind thinking about life beyond diagnosis? Did you experience depression or anxiety?
Lou Eisenbrandt, Army
“Yes, I remember spending two days on the couch curled up in a fetal position. It caught me by surprise when I finally worked my way out of the depression because I had never experienced it before. Once I started reading more about Parkinson’s, I realized that many of us are not depressed because of our diagnosis but because we don’t have enough dopamine. I usually say I’m running at half-quart low. I learned that you shouldn’t be ashamed of taking antidepressants. I’ve really been on them since day one, and I’ve been living with this for 19 years.”
There is a category of veterans who suffer from post-traumatic stress disorder (about 20 to 30% that we know of). Do you think the Parkinson’s and PTSD influenced one another?
Eric Arrington, Army
“For a while, I thought I was going crazy. I didn’t put it together until I finally got the courage to see a psychologist. You’ve got to get the help that you need, take the medication and see the doctors. Taking the medication is not going to make you less of a warrior. It will enhance your abilities and make you stronger. It also takes the burden off the care partners when they are not the only ones watching out for you.”
What are some final words of advice for other veterans living with Parkinson’s disease?
“Find expert care, get the right medications and remember to take them on time. EXERCISE – it’s so important. Get involved with a supportive community of people. Take care of your care partner, especially as the disease progresses and things become more burdensome for them. The VA has some fantastic programs.” - Jay Phillips, Army
“Make sure you do your own research. What helped me was the Parkinson’s Foundation and the VA websites. Make sure you request books from the Parkinson’s Foundation and use their hospital safety resources so you know what you need to ask and have all your medication information handy. - Eric Arrington, Army
“I want to reinforce the caregiver aspect for caregivers are just indispensable patients. Remember that we cannot hurry anymore so be kind when you’re getting ready to go somewhere. And finally, what I tell everybody at least once when I talk to them, each Parkinson’s patient is just like each soldier. No two are alike. Get help if you need it and do not compare your symptoms to anyone else.” - Lou Eisenbrandt, Army
In 2020, the U.S. Department of Veterans Affairs (VA) and the Parkinson’s Foundation announced a partnership to improve the health, well-being and quality of life of veterans living with PD. This partnership will help expand awareness of VA and Parkinson’s Foundation resources provided to veterans with PD.
The Parkinson’s Foundation, in partnership with the VA, will continue offering educational events focused on the needs of veterans with PD. For more information about upcoming events, please visit Parkinson.org/Events or call 1-800-4PD-INFO (1-800-473-4636) for information about veterans’-specific programming.
