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Be the Dancer and Be the Artist

dance

Would you — a person with Parkinson’s — ever call yourself a dancer? An artist? Graceful? Well, it’s possible. Be open to the idea. You may be surprised. I certainly was.

Recently, I met David Leventhal, the program director of Dance for PD. The program brings together trained dancers who are experts at moving alongside people with Parkinson’s who face movement challenges. Elements of dance addressing balance, gait, coordination, flexibility, isolation, depression, and other challenges of Parkinson’s are neatly interwoven throughout the entire class experience.

After a wonderful adventure on the subway, I arrived at the studios of the Mark Morris Dance Group in Brooklyn, New York, and waited for class to begin. I had seen videos of the program. I had also watched a documentary called “Capturing Grace,” which featured many of the dancers with Parkinson’s. Yes, dancers.

I would like to call myself a dancer. Thanks to weekly dance lessons with my husband, I am familiar with ballroom dancing, line dancing, etc. However, to say I am an artistic dancer is really stretching it. Hoping I would not draw attention to myself in the class, I settled on a seat near the back.

“When the dance class is going on, there are no patients … only dancers.” – Reggie, dancer, “Capturing Grace.”

The theme of the class was one of clay or dough. We reached, pulled, and used many variations of movement. With each movement, I was realizing that this program targeted Parkinson’s while also teaching artistry and grace.

Some movements were big and made with amplitude while others were intentionally small. There were also variations in speed — some were fast, others were slow. However, at the same time, all of our movements made a statement. We were moving with a purpose. As the pianist played the music, there were crescendos and decrescendos. Our bodies responded with movements that were unintentionally choreographed perfectly.

Our dough became bread through a series of movements. We tore our imaginary bread and passed it to others around the room in a way that reflected how we felt. There were big, sweeping movements from one person who in turn gently reached and passed it to the next.

Next, it was time to move around the room during a segment using body language to invite each other to dance, and then it was time to waltz. I was excited. I knew how to waltz. However, there was an added element of pushing and pulling the hands and arms of my partner. This introduced an element of balance and being in touch with my body to have a connection with my partner.

Graceful is not a word I would use to describe myself. Yet, I found myself gliding, switching partners, and waltzing around the room. Together, the group transformed into a graceful, moving work of art.

We ended the class in a circle, passing our dough into the hands of the person beside us. Each pass was different and had its own expression. I was last to pass my dough to the teacher, David Leventhal. It was a pass of gratitude and thankfulness. I spent an hour with people I had never met but shared their experience of dancing as art. It was obvious that our Parkinson’s didn’t matter. It made each one of us unique and that was reflected in our movements and the art we created.

“One thing I’ve come to believe about Parkinson’s is that it’s a disease of subtraction. It takes things from you one by one. And one of the many things I learned from the people in the class is that if you are confronted with a disease of subtraction, you better believe in addition. You better start adding things back into your life.”Dave Iverson, producer, “Capturing Grace.”

I do believe that Parkinson’s can add things to life. Good things. You may have to look for them but they are out there somewhere. Like the dancers I met in class, for me dance has been one addition to offset the many subtractions.

What will be yours?

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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What I Learned from Attending a Parkinson’s Symposium

symposium

I recently attended a symposium titled “Shaping the Future” at the University of Delaware. The event, organized by the Johns Hopkins Udall Center, was patient-oriented, so rather than their peers, the expert speakers were addressing people with Parkinson’s.

Looking around the room, I noticed that the audience included people of various ages and degrees of progression. However, we all had one thing in common: hope for a brighter future. I came prepared with my iPad, ready to learn and take notes for this column.

Presentations covered a wide range of subjects, including gut models, cognitive and psychiatric aspects, disease-modifying versus symptomatic therapy, nutrition, pathophysiology, biomarkers, and genetic mutations.

The highlights

  • Biomarkers are like dominoes — a “cascade” leads to cell death. Remove a domino and stop the process. This video explains the concept.
  • You may have heard of alpha-synuclein. I learned that it’s a “bad protein” and potential biomarker when “misfolded” in the development of Parkinson’s.
  • The impact of depression on quality of life in those with Parkinson’s is almost twice the impact of motor impairments.
  • Protein and L-dopa compete for the same receptor in the digestive tract to get into the blood and the brain.
  • Exercise can be a disease-modifying therapy. This presentation looked at a 2017 study that used the Unified Parkinson’s Disease Rating Scale. It found that Parkinson’s patients who exercised at high intensity three times a week for six months had no progression compared with a moderate exercise group whose disease worsened by 1.5 points and a no-exercise group who had a three-point decline.

These are my takeaways from the symposium. If you’d like to explore further, the slide presentations are available here.

Symposiums may not be for everyone; the content can be clinical and hard to understand. However, we should be encouraged by and grateful for the fantastic researchers who are working on finding new treatments and a cure for this disease.

Above all, we should be hopeful that their collective efforts may identify the “dominoes.”

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Parkinson’s Changes the Rules: It’s OK to Ask for Help

rules

We all have a fundamental desire to help our loved ones, and this is particularly true of those of us with early-onset Parkinson’s disease. Life moves along, and we try to advance with it. We are used to taking care of our responsibilities. But when we have Parkinson’s, the rules change.

I was trying to accomplish many things and not doing any of them well. I felt defeated in my job, and as a mom, daughter, and wife. I didn’t know how to step back and recognize my limitations. I had been taking care of everything for over 25 years and I loved it.

Now I find myself in unfamiliar territory. It may be a natural part of getting older or my progression, but I am not the same person. I can’t do everything that I could in the past. And accepting my limitations is not easy.

When my doctor suggested that I see a psychologist, my immediate reaction was, “No, I don’t need to.” However, she was right. I did need therapy, at least in the short term. While it is not for everyone, therapy has been beneficial when I find myself struggling. My therapist can make me aware of things that my friends, family, and others who are part of my everyday routine can’t see in me.

Talking with a professional provides a different perspective. And sometimes, having a fresh look at your situation can help you to get to where you want to be. Unfortunately, therapy is not always available, and people often avoid seeking this kind of help because of the stigma attached.

New rules

While my approach is still a work in progress, I have developed some new rules. I am sure that I will add more and you may have some rules of your own. With the busy holiday season approaching, you may want to give these a try:

  • You don’t need to take care of everything.
  • Know when to seek support.
  • It’s OK to ask for assistance.
  • Allow others to help.

Parkinson’s makes us feel helpless at times. However, it’s not just about us. What about the people in our lives? Do they feel the same way? Maybe playing by the new rules and allowing them to help us will make them feel more useful. We can see our acceptance of their help as a gift to them rather than a burden — something as simple as opening a car door can make all the difference.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Parkinson’s Disease and the Uninvited Guest

parenting

When Parkinson’s entered my life, it brought an uninvited guest along with it: Parkinson’s me.

Parkinson’s me follows me everywhere and is part of everything I do. Most of the time, she quietly stays in the background. Other times, she is overwhelming, to the point where putting on my brave face becomes exhausting. Until recently, I didn’t always like Parkinson’s me, but I’m trying to understand her instead of simply being afraid of her.

Parents with early onset Parkinson’s are in the busiest times of their lives. Any situation can become stressful and trigger symptoms. Despite my best efforts, Parkinson’s me tends to arrive front and center. It’s not uncommon for her to have a completely irrational response to things. Indeed, anxiety and Parkinson’s are good friends often seen together. Their relationship manifests as a nonmotor symptom that, when overlooked, can be debilitating, frustrating, and embarrassing.

I feel helpless when Parkinson’s affects my ability to parent my child. Parkinson’s me always seems to arrive when my kid needs me — at tryouts, auditions, school functions, and other crowded events. For example, Parkinson’s me accompanied my son to a crowded audition, complete with tremors and a feeling of panic. My son put his hands on my shoulders and said, “Mom, I’ve got this. You can go.”

I was embarrassed and felt horrible for leaving, but he was right to send Parkinson’s me on her way. Rather than being embarrassed by what I could not do as a parent, I should have been proud of my son’s confidence and his ability to handle this situation and many others.

If we’re open about Parkinson’s and willing to talk to them about our diagnosis, kids are incredibly perceptive and resilient. In my opinion, we should help them understand Parkinson’s so they are not afraid of it.

Ultimately, we are still their parents. We just happen to have Parkinson’s.

If you find yourself embarrassed by your disease as a parent, stop and ask yourself the following questions: Did you get the job done? Was your kid strong and confident? The answers will be “yes” because you are a parent. Your kid knows that you don’t quit.

You may stumble and fall, but you will always get up. They are confident that you will be there for them, which is a direct result of your efforts, despite the challenges that come with Parkinson’s.

It is not easy to admit, but Parkinson’s me actually can get the job done. The job is just done differently, and that’s OK.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Empower Yourself by Making Good Choices

exergaming

Medication is more than the regimen of pills we take every day. Exercise, diet, and music are lifestyle choices that are beneficial to people with Parkinson’s disease (PD). We did not choose to have Parkinson’s, but we do have a choice about how we live with and respond to PD.

Making good choices and living well with Parkinson’s is empowering. You are in charge. There can be a day when the couch and ice cream for breakfast are the specials of the day — they just can’t be specials for the entire week.

One frequently asked question is, “What is the best type of exercise?” While research regularly highlights different benefits of different types of exercise, the answer is simple: The best type of exercise for you is one that you love to do and look forward to every day. Try different things. I do a variety of exercises, from coaching Rock Steady Boxing classes to attending ballroom dance lessons with my husband.

Exercising with people who also have PD is an added bonus. Shared diagnoses facilitate camaraderie that becomes an extended family. You show up for class because your brothers and sisters are waiting for you. Everyone may be at different stages in their Parkinson’s journey, but we all share the same hope.

Exercising together provides a support group that meets two or three days a week, rather than once a month. It may be the only support for someone who otherwise may be alone. By doing things together, the unexpected and uncertain Parkinson’s detour can be a little less frightening.

So, where does music factor into the detour? Music can take you in so many different directions, like playing an instrument, singing like a rock star in your car, or dancing. There is evidence that drumming is beneficial, and you don’t even need an instrument — turn your garbage can over and you are ready to go!

Music encourages movement and is fun, especially when dancing. We all know that when we hear the song “YMCA,” all hands are in the air. Dancing is something you can do with someone who is on the Parkinson’s journey beside you or even by yourself. Dance through your house while doing the daily housework like no one is watching!

Little victories happen each day. If you can’t find one, create one by choosing a little extra medicine that has a good beat, makes you sweat, or gives you vitamins. So, go ahead and put on some good music, exercise, and finish with a smoothie made with all those superfoods (yes, even kale). At the end of the day, you can look back and say, “Today, I was in charge, and I won.”

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Journaling Your Way to a Productive Doctor’s Appointment

journal

Despite having a good rapport with my movement disorder specialists, a feeling of dread still overtakes me when I have an appointment looming in the next 48 hours. This occurs even when I don’t anticipate the day’s events being different from the last time I sat — and sat and sat — in the waiting room.

As inconvenient as waiting may be, I don’t think it is the physician’s fault. Many doctors are overscheduled with patients and accompanying paperwork. Most make an effort to spend time with each patient, and in doing so, cannot abide by a fixed schedule.

Artificial intelligence will impact healthcare in coming years, but as patients, we can help the process by being prepared when it is our turn. Keeping a journal about how you feel throughout the day can help to sort the puzzle of constantly changing health.

I find this beneficial when starting a new medication or experiencing new symptoms. You also can write down questions, including anything from medication side effects to the latest research or clinical trials. Be concise.

When arriving at your appointment, check in, update your information, and find a quiet place in waiting room No. 1. Eventually, your name will be called. You’ll spend some time in waiting room No. 2, where the assistant will take the form you filled out in waiting room No. 1 and enter the information into a computer. They’ll also take your vital signs.

After a few attempts with the blood pressure machine, the assistant will manually take your blood pressure — yes, you do have blood pressure, it’s just low. Finally, you’ll be on your way down the hall to your final destination, the exam room. The assistant will settle you in and say, “The doctor will be with you shortly.”

The exam room has now become waiting room No. 3, but at least you have made it through the final door.

Choose this time to be productive. Get those questions ready or use the opportunity to challenge your brain. Look around the room. Find 10 things, then shut your eyes and do a memory recall game. With a bit of luck, you will hear the door handle turn as you finish the memory game. Your neurologist has arrived and will greet you with, “So, how are you doing?”

If you have a journal, or at least something you wrote down in the waiting room, you will be better prepared. You can offer a genuine answer to questions, rather than automatically responding with just an “OK.” You can be an advocate for yourself and help solve your personal Parkinson’s puzzle. You know how you feel better than anyone else.

Just remember to bring your journal and be patient. It’s worth the wait.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Happy Trails While Hiking Your Parkinson’s Mountain

trails

As a person with Parkinson’s, do you think hiking is a viable exercise option? If your answer is a resounding “No!” you are not alone. If someone had told me in the past that I would take up hiking, I would have had a similar response. However, keep an open mind, and you may surprise yourself and those around you. Granted, hiking up Mount Everest is probably not your first choice, but there are other mountains you can climb and trails you can explore.

So, how does someone with the Parkinson’s symptoms of poor balance and a shuffling gait accomplish such a daunting task? The answer is one step at a time using trekking poles. These poles take some time to master, but it’s worth the effort to learn to optimize their benefits. Trekking poles encourage big and coordinated movements. They require the use of both arms, forcing one side of your body to work when it would prefer to be sitting on the sidelines. Your arms and legs work as a team, and each member must participate.

Hiking is not compulsory. As a person with young-onset Parkinson’s, I have many tools in my Parkinson’s toolbox, and I am continually looking for others. My trekking poles are one of my best tools, and I use them often. They are fantastic when I need a little extra help with balance. Besides, they look cool and are relatively affordable. Of course, fancy and expensive poles are available, but they’re not necessary — the only requirement is rubber feet.

A bonus of using trekking poles is they help to improve your posture. You might even become a little taller because rather than leaning forward, you’re standing up straight. With better posture comes improved balance and gait, and, most importantly, confidence. I have also seen others use poles to help with freezing by shifting their weight and using the feet of the poles as targets.

Start small, be smart, and most of all, stay safe. A gentle stroll around your house or along the sidewalk is an excellent way to begin. Once you are comfortable, try a local park or shopping mall. Before you know it, you will be on your way to bigger, better “mountains,’ and a more confident you. Happy trails!

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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