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In Addition to a Cure for Parkinson’s, What Else Do We Really Want?

things

We all want something in life. We want to win the lottery or find our perfect mate. For those of us with a chronic illness, we’d be more than satisfied with a cure for our disease. 

Until we find a cure for Parkinsons’s disease, I’ve compiled a list of things that might help people with the disease to live with greater ease:

1. Some Parkinson’s patients would do anything to regain their sense of smell. It is a brighter day when we get a whiff of a rose’s fragrance or the aroma of garlic bread.

2. We want to feel good. I’m not merely referring to the absence of nausea, although that comes into play with all of the medications that can make us feel sick. We also want to feel positive about ourselves despite this disease taking so much from us.

3. We often feel that we have nothing left to offer, and we would like someone to remind us that we still have a purpose despite Parkinson’s.

4. I’ve heard of people with Parkinson’s whose family members or friends believed they were pretending to have the disease. Here’s what I say to them: “Don’t you think we have better things to do with our time than pretend to have an incurable disease?”

5. We want others to understand that although some of our symptoms can be hard to see, the disease is real. Our tremors, pain, lack of balance, and risk of falls are genuine.

6. Parkinson’s disease can be summed up as a loss of dopamine in the brain.

7. Our constant companion is this little monster, but we would like a reprieve from frequent shaking.

8. It would be fantastic if others were aware of the struggles and invisible symptoms that we live with so that they can fully understand the urgency of a cure.

9. It is common for people with Parkinson’s to experience sleepiness as a symptom and as a medication side effect. As a result, we can spend a good deal of our day sleeping. We also struggle to get a good night’s sleep. It can be a vicious cycle. We would love a treatment that doesn’t knock us out for half of the day but instead knocks out Parkinson’s.

10. Besides having a little plastic bat to bonk others over the head when they make thoughtless comments such as, “You don’t look like you have Parkinson’s disease,” a cure would also be welcome!

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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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The Link Between Compassionate Support and Wellness

PD Dr. C's Journey, loss of vision

It has been rough going recently, after I acquired a “legally blind” diagnosis on top of Parkinson’s disease. It has been a month, and part of the reason I am back to column writing so soon is because of the compassionate support I received, which was freely given. It has made a big difference in my life. This compassionate support has bolstered my wellness program and given me the added strength I needed to move forward.

People speak of wellness as some sort of bonus you get from doing something because it’s “good for you,” like eating vegetables or walking 10,000 steps a day. But healthful practices are not the only factor in the wellness process. The wellness that comes from compassionate support is more than that.

When support is given in a truly compassionate way, it reflects not only on the act of support, but also on the possibility that we can be a “better self.” It doesn’t matter how bad things appear because compassionate support can make things better. It works.

There are lots of ways to block yourself from connecting to the compassion others offer. Sometimes, it seems easier to give than to receive. This month, I didn’t want to go to the local Parkinson’s support group. I felt like a failure, to everyone else and to myself. The pain and suffering I was going through created a wall between me and the rest of the world.

My partner of almost 50 years convinced me to go. Allowing myself to be vulnerable, to let down those walls and enjoy the support group, also allowed me to feel this potential for the betterment of mankind. I connected to that for my personal well-being. Moaning about how terrible I feel doesn’t get me anywhere. I am trying to focus on the here and now, to keep a positive attitude about tomorrow.

Over the past four years, my partner and I have moved to a new house that is more ADA-accessible, changed career focus, rebuilt our caregiver/social network, and dealt with each untoward event that has popped up along the way. My partner walked with me through all of this while having her own medical issues. Often fatigued and occasionally overwhelmed, she fought hard to improve our quality of life. This included kicking me in the butt occasionally, and being firm about the importance of continuing to engage in life.

There is much research that lends credence to this idea that humans helping one another — sharing in the process of compassionate support — can make a difference in wellness. A recent study showed that a stronger purpose in life was associated with lower all-cause mortality. Several interventions have been clinically reviewed, including well-being therapy, that demonstrated improvements in purpose in life, quality of life, and various health outcomes.

The “O” in CHRONDI is for “Others.” It speaks to the interconnectedness we have with each other, connections that can help with our wellness. This is not about some supernatural phenomena or “butterfly effect.” Rather, it is about a human relationship phenomenon that exists to share a flow moment in time. It is the experience of gratification after allowing myself to embrace the compassion being given. The compassion given and received (well-being experienced phenomenon) is a fundamental part of the relationship I call the healing relationship.

There can be resistance to the healing relationship that is connected to compassionate support. Connectedness doesn’t usurp identity. I sit on the island of individuality often. The idea of self has special meaning for me. It’s the “I” in CHRONDI. When it comes to wellness, that island is the last place I want to be.

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I want to add a special note of recognition and gratitude to my first-line editor, Robin Ketchen; the BioNews Services team, especially Brad Dell and Dave Boddiger; my family and friends; the New London and Concord Parkinson’s support groups; and all those readers of my column whose comments were so encouraging for me to continue writing. A special hug to my wife, who reminds me of where I need to be, helps me get to the destination, and has supported the “journey” for all these decades. 

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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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Harnessing the Power of Music

Listening to music

A proud, black piano stands in my parents’ living room. It’s the foundation of our home. From behind the sleek mahogany panels, fury, sadness, and happiness express themselves without judgment. My operatic brother sings his troubles away. My mom, a lifelong piano teacher, often alludes to the power of music because it isn’t just a creative outlet. It’s a mood-setter. It establishes rhythm and dance. Therapists use it to explore cognitive and emotional turmoil. And it also facilitates social change.

“Powerful songs have always been the engine behind the greatest social movements — it is the marching soundtrack that unites the people and gives them focus and resolve, and it’s not limited to the U.S.,” Barrett Martin writes in HuffPost. “In 1970s Nigeria, Fela Kuti invented Afro Beat music as a way to protest the oil company regime of Nigeria. His song ‘Zombie’ became a global hit that railed against Nigeria’s military dictators. In South Africa, the indigenous Mbatanga music helped bring about the end of apartheid and it spread a message of peace and reconciliation in that nation.”

If music is powerful enough to inspire entire chapters of history, what else is it capable of doing?

Parkinson’s disease and music

Music is powerful for a number of reasons; listening to it releases dopamine and serotonin – neurotransmitters that decline in Parkinson’s patients. But a study published in 2008 suggests that learning how to play an instrument also develops motor skills and reasoning abilities. Children who learned to play an instrument exhibited more advanced motor and reasoning skills than children who didn’t learn to play an instrument.

That same study states that, “Parallels between music and language have been used to support the hypothesis that music training may strengthen verbal skills.” Since music may help to develop speech patterns, exploring sound offers a tangible solution to verbal decline. Changes in speech occur with the progression of Parkinson’s. But active participation in music challenges the progression of Parkinson’s disease. Rather than observing consistent loss, Parkinson’s patients can explore music as a source of development.

Singing and Parkinson’s disease

If you’re feeling particularly enthusiastic about singing, consider joining a Parkinson’s singing group. In the same way that music changed history for entire communities, Parkinson’s singing groups offer a sense of camaraderie that’s powerful in itself. Producing endorphins in those who participate, singing is both cathartic and constructive. And it even boosts the immune system.

A small 2012 study in Norway found that group music therapy positively affected five of six Parkinson’s patients. While speech patterns didn’t noticeably improve, a decline in speech also didn’t occur during the study. This suggests that group singing may slow the progression of speech-related outcomes for Parkinson’s patients.

Singing encourages focus on breath support, diction, volume, and emotion. Vocal strength and articulation can challenge many Parkinson’s patients. But singing reinforces some of the functions that otherwise degrade.

Moving forward

Parkinson’s disease is degenerative and continuously heartbreaking in its thievery, but there are ways you can use music to fight its progression. Whether you’re interested in listening to records, picking up an instrument, or using your good ol’ vocal cords to bring happiness into your life, music offers incredible benefits to those who explore it.

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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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Are You the Light in Someone’s Darkness?

Traveling through Parkinson's

I attend my boxing class twice a week. Regardless of whether she is having a good or not-so-good day, Kathy, another woman in my class, will be smiling. Not only will she be smiling, but she will be giving away words of encouragement. I often hear her thanking one of the coaches or the occasional volunteers for something they have done — not for her, necessarily, but for the entire class, like showing up for us.

It’s not that the rest of us aren’t thankful or don’t appreciate what is done for us, but Kathy goes a step further and thanks them — every time. She is illuminating the journey to being found.

What do I mean by that?

Panorama: The Journal of Intelligent Travel introduced its fifth issue, titled “Lost,” by saying, “The word lost originates from the Old English losian, meaning to perish. While this collection features many narratives of loss, it also illuminates the journey to being found.”

Having Parkinson’s disease can feel like being lost. It can sometimes feel as if you are all alone, wandering by yourself on a journey of endless twists and turns, unable to see what is coming around the next bend. You feel like you are slowly fading from who you once were into someone you no longer recognize.

You may have once been calm, while now you are anxious. At one time, you may have been a great orator, whereas now you fret over holding a simple conversation with a friend. You may have won medals for being the fastest runner on your college track team, but now you don’t dare go anywhere without your cane to stabilize you.

It’s hard to come to terms with something like Parkinson’s disease, and it’s easy to feel lost and misplaced. To feel like you’re living someone else’s life and not the one you thought you’d be living. It’s hard to go around greeting people cheerfully while you’re dealing with a disease you’d rather not have. 

Let’s just say it, shall we? Let’s just be honest. Sometimes, we don’t just feel lost, we feel as if we are perishing faster than we’d hoped and in a manner we never dreamed of. But there were people who found us slumped over alongside the path we have found ourselves on with this disease. They sat down beside us, told us they’ve “been there, too,” and helped us get back up. They brought light to our dark world and showed us we can smile and be thankful once again.

Is there someone who is a light in your life? Someone who illuminated your path while you felt lost and alone? Pay it forward. Be a Kathy, a light in their darkness.

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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.

The post Are You the Light in Someone’s Darkness? appeared first on Parkinson’s News Today.

Sinemet Has Left the Building

Sinemet

A recent Merck product status report shows that Sinemet 25-100 is on backorder, with no current availability date. I have been on Sinemet 25-100 for almost a year now. When my pharmacy called me to say there was no more Sinemet for my refill, I was devastated.

Generic carbidopa/levodopa (C/L) had made me nauseated when I’d tried it in the past, so my neurologist prescribed the brand name Sinemet. It took months of trial and error to find the right dosage and timing for my current “cocktail” of Parkinson’s disease (PD) medications. (I also am on the Neupro patch (rotigotine). Now, it seems I may be back to square one.

What do I do now?

Currently, under my doctor’s guidance, I am rationing my remaining Sinemet (two in the morning) and taking C/L (two in the afternoon) to ease myself into all generic. Thus far, I have had no nausea; however, I do believe my energy, balance, and fine motor skills are deteriorating. This could be because of disease progression, or perhaps, it could be due to the generic not being as effective in terms of absorption as the brand. I am back to trial and error to figure out what works for me.

In the United States, the FDA indicates that it is acceptable for a generic drug to have up to a 20 percent difference in absorption rate than the brand-name medication.

Note that symptom relief can also vary among generics, and there are several companies that manufacture C/L.

Crisis is opportunity

“When written in Chinese, the word ‘crisis’ is composed of two characters.  One represents danger and the other represents opportunity.”  — John F. Kennedy

Kennedy’s words, while not strictly accurate, make a good point. In light of this Sinemet shortage, I am trying to reframe how I view its impact on me. I am choosing to believe this may be a good thing, as I will now explore three other treatment options.

1.  Getting another opinion on my situation through a no-fee telemedicine consult.

If you have PD, live in New York, and have internet access on a computer or tablet, you may be eligible for a no-charge telemedicine consult with a movement disorder specialist.

2.  Registering for PD summer school in August 2019

This is a five-day conference at Bastyr University’s Seattle-area clinic, and it is focused on improving PD outcomes. From what I have seen on the website, most of the instructors are naturopathic; however, some are also traditional MDs.

3.  Trying infrared light therapy (photobiomodulation)

A few months ago, an Australian friend shared a video link with me about Max Burr, a man with PD who has experienced positive results from infrared light therapy. Burr is also mentioned in a news article about what is happening with infrared light therapy in Australia. John Mitrofanis, a researcher at the University of Sydney, used red lights on mice with induced PD. The animal trial found the light stopped the nerve cells in the mice’s brains from dying.

After I contacted Mitrofanis, he referred me to an Australian medical professional who was doing extensive work in creating infrared light therapy devices for humans. Her website and blog have a lot of useful information related to infrared light therapy.

I found two other promising articles about infrared light therapy, especially for treating some PD symptoms. They are:

I started this therapy at the end of May. I plan to write an article in a few months describing my experience with this treatment.

Although full clinical trials have not been completed on this therapy, I am encouraged by what I have seen. In 2018, the article “Exploring the use of transcranial photobiomodulation in Parkinson’s disease patients” was published in the peer-reviewed, open-access journal Neural Regeneration Research. It established a positive tone regarding the treatment.

Apparently, there are no side effects, and the treatment is noninvasive. My neurologist gave me his blessing to try it. I said to myself, “What have I got to lose?”

Perhaps the backordered Sinemet situation may be the best thing to have happened to me.

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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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My Wedding Verse of Courage Can Be Our Parkinson’s Pep Talk

courage

I can’t believe that it’s been almost 39 years since I got married. July 4, 1980, was the day I obtained my independence. Sort of.

When the pastor was preparing for our wedding ceremony with my soon-to-be husband and me, he asked if we would like to include a particular biblical passage as our “life verse.” We chose some verses that were associated with bravery and courage (Deuteronomy 31:6-8). 

I don’t recall why we chose those specific verses over the thousands of others in the Bible instead of something like “love is kind.” Perhaps our youth had something to do with it.

We may not have given much thought to a “life verse” when we said “I do” 39 years ago, but the verse became just that during the many personal trials we went through over the years. One of these is Parkinson’s disease (PD). Certain life events require you to be brave whether you want to be or not.

It’s easy to tell someone to be brave; it’s another thing to have courage. I remember my granddaughter watching a movie with her “Boppa,” and he was pretending to be afraid. She asked him what was wrong and he replied, “I’m just not very brave right now.” She said, “Yes, Boppa, you are brave. You just don’t know it yet.”

Parkinson’s disease is a real enemy. At times we show fear and terror on our masked faces as we continue on our difficult journey. The verses we chose to guide us told us to be strong and courageous. They urged us to be calm and assured us of God’s presence.

Our wedding “life verse” was originally a pep talk given by Moses before going to battle. (Remember him? He was the guy who parted the Red Sea.) It was our pep talk when we got married; it can also be a pep talk for those of us with PD.

I still encounter enemies of various kinds (like Parkinson’s disease), but I’ve learned to be strong and courageous. It’s a lifelong lesson. We need a pep talk now and then to encourage us to face our struggle with courage. We go into battle with PD after defeating fear with the knowledge that we are not alone.

We can find words of wisdom everywhere that we can carry for life. You could even borrow mine — they’ve worked for me.

Following is my pep talk for those with PD:

  • Be strong. Be filled with courage. 
  • Do not be afraid and don’t be terrified.
  • Do not be discouraged.
  • You are never alone.

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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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Strategies to Combat Freezing in Parkinson’s Patients

Strategies to Combat Freezing

Freezing” is when an individual suddenly feels like they’re glued to the ground. Parkinson’s disease patients often experience freezing during the late stages of the disease. It can occur while the person is in motion or after they’ve been stationary and then attempt to move. It’s associated with complicated movements like dodging obstacles or getting up from a chair.

The loss of automatic motor skills affects one’s sense of control and even their safety, as about 38 percent of Parkinson’s patients fall each year. Tracking when your struggles occur can help you to manage them, allowing you to challenge how frequently freezing occurs.

What causes freezing?

Not everyone with Parkinson’s experiences freezing, and the exact cause of freezing is unknown. But our relationship to balance gives insight into potential causes. Parkinson’s patients experience changes in the brain that affect the way they walk.

Dr. Howard Weiss, in his blog for the Parkinson Foundation of the National Capital Area, writes, “’Freezing of gait’ is often triggered by specific activities or circumstances that demand switching between motor actions.” While learning to walk, we strengthen the neural pathways that allow us to balance. But Parkinson’s patients see a degradation of these pathways, leading to difficulty in stabilization.

What freezing is like for my dad

Like many Parkinson’s patients, my dad notices that he usually only freezes when he’s not on his medication. It usually happens while he’s moving through doors: “When you pivot you’re worried about losing your balance. That’s why we shuffle our feet and take baby steps initially. Once I’m moving I’m fine,” he says.

Since he’s worried about maintaining balance while navigating, it’s possible that there’s a connection between fear and freezing. Continuous motion seems to bypass the risk of freezing, while shifting motion types can present challenges.

But curiously, stairs are rarely problematic: “I freeze just before I’m ready to go down the stairs. But when I’m actually walking downstairs I don’t have a problem. I can practically hop down them once I’m in motion. And going upstairs is fine,” he says. Getting started can prove challenging, but the act of walking up and down the stairs is still relatively easy.

So, what can you do to manage freezing?

  • If you find yourself getting stuck in particular places, try changing the layout of your living space. Freezing can occur because you have to pivot around furniture.
  • Exploring rhythm helps you to maintain momentum where you previously got stuck. Some Parkinson’s patients explore strategies like dancing, counting, marching, and shifting their weight from side to side.

Thinking outside of the box can assist you in unfreezing yourself. Dad finds that his posture can affect whether or not he’s able to unfreeze himself: “When I freeze, I stand up straight. If I move away from gravity, I can unfreeze. But if I’m hunching over, gravity pulls me toward the floor and it takes longer to get out of the freeze. And once I move my left foot forward, I can unfreeze. Freezing’s scary. That’s why a lot of Parkinson’s patients fall.”

Exercise and physical therapy can be game changers

Joining a Parkinson’s-specific fitness program like Rock Steady Boxing helps you to strengthen your motor functions. This ultimately allows you to stabilize with more ease. Since Parkinson’s patients often see a decline in motor skills, exercise can offer a good option for strengthening those skills. Rock Steady also uses portions of the class to teach Parkinson’s patients how to fall.

According to Dad, “About once a month or so, they’ll put mats on the floor and show you proper falling and rolling technique. They try to do things in boxing that’ll help people with different stages of Parkinson’s.”

While the exercise portion of Rock Steady Boxing is valuable in itself, learning how to fall helps mitigate risk as much as possible.

Freezing is a frightening phenomenon, but there are ways you can manage this symptom. Stay positive! Try to find Parkinson’s fitness classes or challenge yourself with rhythmic solutions to freezing. Other patients have found that these strategies can assist in the management of motor-related functions.

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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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In the Battle Against Parkinson’s Disease, Are You a Warrior or a Worrier?

warrior

A warrior is not a worrier. A worrier has no peace, is filled with anxiety, and frets over the smallest things. Worriers tend to be lacking in courage and a calm spirit. 

Warriors exude courage. They are brave in the midst of the battle. They are fighters determined to not merely survive but to thrive. Warriors choose to march forward despite the war raging around them.

Parkinson’s warriors have been to the battleground many times. 

They have fought grief over losing pieces of themselves to this disease. 

They have battled depression and struggled for their mental well-being. 

Fear is no stranger in their war, but they muster up the courage to overcome it. 

The enemy of control has gathered its forces against their muscles and nerves, causing them to flail about, become weak, and tremble. They do their best to take charge, using the weapons available: physical therapy, medications, exercising, deep brain stimulation, and more.

The skill with which they once used their fingers to write or paint, garden or fix things, and button and zip their clothes is vanishing, and they realize they may not recover their dexterity.

But they must carry on.

I must not allow this disease to steal my hope that drives me to carry on in the midst of pain and grief. And you mustn’t either. Hope allows us to put one foot in front of the other regardless of our fear of falling — it may even put a cane into our hands. It allows us to focus on the positive things that might be and those that could be. It wears blinders to block out fear and prevent it from taking our joy and peace.

We must not allow it to diminish our courage. 

Our battle is tough, and we may feel that we’re fighting this disease alone. Parkinson’s can leave you feeling isolated, which makes it more difficult to fight.

That’s why it is so important to go out and get involved in the Parkinson’s community. Join an exercise class for those with Parkinson’s. You will meet new people and feel better mentally and physically. Support groups online or in-person will help you to feel connected and provide you with a safe place to share your experiences. 

If you feel like you’re fighting a battle with Parkinson’s and could use some reinforcements, let me know. You can never have too many soldiers around you. We’re not supposed to fight this disease alone. I’ll be with you on the battlefield.

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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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Time to Rediscover Dance and Music

Slow Is the New Fast

Editor’s note: This column discusses suicide. 

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“The music and movement started, I was filled with great joy. I was able to take the whole class and walked out feeling accomplished, encouraged with that passion for dance rekindled. Seeing the class participants enjoy music and movement and benefit from it was so thrilling. I saw the endless possibilities for those with Parkinson’s and for myself.” —Dance for PD participant

Some background

Steve was the love of my life for over 33 years. He died by suicide in 2015. Steve would always chide me on how I never knew the lyrics to my favorite songs. While Steve knew song lyrics and was moved by them, I thrived on feeling the rhythm of the music in my body — probably the reason I studied dance for so many years.

Why did I stop dancing?

When Steve passed, I lost my love of dance and music. After receiving my Parkinson’s disease (PD) diagnosis later that year, I thought I might try Dance for PD at Lincoln Center in New York City to see if I could recapture that love of dance and music.

I left the class in tears, seeing how much I had lost, and never went back.

Fast-forward to the end of 2018, the song, and the book

More Than a Feeling” was playing on the radio. This is a 1976 Boston song and one of Steve’s favorites. Now that my life partner is gone, I find myself listening to the words of songs more. Steve’s penchant for learning lyrics spurred me to search for the words of that song. I noticed that the lyrics mentioned slipping away (“Slipped Away” is the title of Steve’s memoir, which I wrote).

Later that same week, a friend loaned me the book “Goodbye Parkinson’s, Hello Life!” by Alex Kerten. Alex espouses the Gyro-Kinetic method for eliminating PD symptoms. What I got out of the book was that movement and music are key to attaining relief. On the first page of Chapter 17, “The Role of Music,” there were lyrics from “More than a Feeling”:

“I lost myself in a familiar song

I closed my eyes and I slipped away”

Hearing a favorite song of Steve’s from 1976, reading the book about Gyro-Kinetics, and seeing the song lyrics containing “slipped away” in Chapter 17, all in the same week, blew me away.

Is this a ‘sign’ from Steve?

Perhaps Steve is sending me a sign that I need to dance again and rediscover my love of music. That is the way I will take it. Now, I am listening to a lot more music, conducting imaginary orchestras, and dancing with abandon in my living room in an effort to ease my PD symptoms.

“You’ve gotta dance like there’s nobody watching,

Love like you’ll never be hurt,

Sing like there’s nobody listening,

And live like it’s heaven on earth.”

—William W. Purkey

As I was putting the finishing touches on this column, over a week after I started it, “More than a Feeling” started playing on the radio.

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.

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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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Two Summer Reading Recommendations to Encourage and Inspire

scars

Sometimes we need to be encouraged in our journey with Parkinson’s disease. We become weary and find ourselves at the edge of despair. We feel like we’ve nothing left to give and life is losing its luster. What better way to dispel the gloom than to read an inspiring book?

I have recently read two books, one about chronic illness and another specifically about Parkinson’s. In their own ways, both evoke laughter, echo grief, and inspire that much-welcome, four-letter word, hope. 

Rush of Heaven” author Ema McKinley was doing a normal day’s work when her entire world turned upside down — literally. While climbing a mountain of boxes to replenish merchandise in the department of the store where she worked, she lost her footing. Ema hung upside down for almost three hours before being found.

Her journey is a difficult one, to say the least. It is a journey of endurance in a life filled with horrible pain, but also with joy. Her accident left Ema with reflex sympathetic dystrophy, a severe burning pain that is usually brought on by trauma and tends to settle in one of the extremities. In Ema’s case, it affected most of her left side, neck, and back. She required the use of a wheelchair and permanently leaned at a 90-degree angle in an attempt to reduce the severity of the pain she was enduring.

Just when one condition would settle itself and bring some sort of reprieve, another would show itself. It seemed there would be no end to Emma’s suffering. As her situation became somewhat bleaker, Ema knew she had to “shift my focus from my situation to my destination. God didn’t just keep me alive so I could take up space. He had a purpose for me.”

Through her pain, she eventually did find purpose, one that leads her to encourage others because of her accident, her pain, and a miraculous encounter.

At home alone one Christmas Eve, Ema lies on the floor after falling out of her wheelchair. She fears this could be her last Christmas with her family. However, the One who has been faithful to her in the past will prove Himself faithful to her once again. (You’ll have to read the story — no spoilers.)

There are similarities between “Rush of Heaven” and “Dropping the P Bomb,” by Emma Lawton, but the two books are also very different. While Ema chronicles her journey as a narrative story, Emma’s book reads more like a series of short blog posts written over the course of the first year of her Parkinson’s diagnosis.

Whether taken from a diary or straight from her blog, her entries are honest, and she leaves herself vulnerable on the pages shared. The newly diagnosed would benefit greatly from her description of what that first year can really feel like.

With her dark sense of humor, Emma keeps things real, yet light, as she talks about her ups and downs in that first year, about sharing the news of her diagnosis with family and friends, and their reactions. She shares her struggles with acceptance, adjustments, and more. Emma was diagnosed in her late 20s, so this is a rare account of a young person with Parkinson’s. All the more reason to read “Dropping the P Bomb” this summer. 

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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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