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No Matter Your Age, We’re in This Together

fires, silent symptoms, marriage, tasks, bucket lists, forgetfulness

I recently read that Parkinson’s disease affects an estimated 1 in 100 people over age 60. When I started my Parkinson’s journey, I was in high school.

I didn’t know that what was happening to me was something known as Parkinson’s disease. I didn’t even know what Parkinson’s disease was or what it was capable of. I was a young’un in the community, unaware that there were Parkinson’s communities, too.

My symptoms were minor at the time, but they existed. Sometimes they were hard to ignore, but ignore them I did. 

I soon had small children to distract me. As they began to grow, so did the number of calendar entries, which led to more distractions. Meanwhile, I continued to ignore my symptoms, but eventually, it became obvious I couldn’t ignore them any longer, so I scheduled a doctor’s appointment.

I’ve often thought about the transition from young-onset Parkinson’s disease to “normal” Parkinson’s. Is there a time of transition, or does one simply slide from one into the other? If diagnosed with young-onset Parkinson’s, when does it become “regular” Parkinson’s? 

According to the statistic I previously mentioned, what I refer to as “normal” Parkinson’s disease occurs at the age of 60 or older. Young-onset Parkinson’s is said to occur generally between the ages of 21 and 50. In rare cases, it has been diagnosed at an earlier age than 21.

I have spent the last decade journeying through the years that Parkinson’s statistics seem to pay little attention to: 50- to 60-year-olds. But rather than feeling overlooked or left out from the Parkinson’s crowd during my 50s, I feel blessed. This is because I discovered early on what was happening inside of me. I learned earlier than most that life, and those with whom we share it, should never be taken for granted. 

Many live as if life will never end. But people with a disease are aware their bodies are giving out. 

It’s been said that Parkinson’s disease usually progresses more slowly when diagnosed at an earlier age. Being attuned to this fact, I have strived to to get as much out of life as I can. 

My life may not compare to someone else’s in terms of activities. I haven’t climbed mountains, run marathons, ridden an ostrich, or caught a greased pig as a means to advocate and go all out for Parkinson’s awareness. Those weren’t the opportunities afforded me, nor do I think they are my purpose in having this disease. We are not all called to do the same things. Some of us climb our mountains, some walk the trails, others swim the seas, and some, like me, write about it.

One of my favorite opportunities in living fully is spending time with my family, especially my grandkids. By seizing the opportunities to care for my little “grands,” my energy has come on strong when I needed more of it. I think there is something magical about grandkids that makes magic like that happen.

Whatever your opportunities or choice in how you spend your precious time are, seize every moment. You may be a young-onset person with Parkinson’s or a person with “regular” Parkinson’s. You may be floating somewhere in the middle, trying to navigate life in your 50s. Wherever you are, keep moving forward, keep pressing on, and don’t give up. We’re in this together, no matter how old we are.

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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 No Matter Your Age, We’re in This Together appeared first on Parkinson’s News Today.

Podcasts Make It Easier to Stay Informed

podcasts

Living with Parkinson’s disease is a daily battle. It can be difficult to navigate the disease on your own, but the right resources can make staying informed a little easier.

Since many Parkinson’s patients experience tremors on a regular basis, audiobooks and podcasts may be helpful in lieu of books or newspapers. Most podcasts offer quick access to relevant topics and weekly updates about current news and events occurring across the globe. The following talk about the science behind Parkinson’s, but also share personal insights.

The Michael J. Fox Foundation Parkinson’s Podcast

The Michael J. Fox Foundation is known for the work that it does in Parkinson’s research and awareness. This is especially evident in the foundation’s podcast, where you can find interviews with scientists and doctors. There’s also plenty of information about living with Parkinson’s. Interviewees give tips about common ailments associated with the disease and ideas about how to navigate them. One episode features listener questions for doctors. Another discusses the role of inflammation in a Parkie’s day-to-day life. Overall, this podcast is incredibly informative and provides great insight.

When Life Gives You Parkinson’s

In “When Life Gives You Parkinson’s,” Larry Gifford shares his personal journey with the disease. He explores common questions about Parkinson’s, with recent episodes featuring ideas about finding a cure. He also interviews other people who are battling the disease, providing insight from an array of different people. This podcast offers tremendous insight and information about Parkinson’s and what it’s like to live with its challenges. The perspectives make it more personable than your standard news outlet and yet, it can be just as informative.

Trembling EMT: My Parkinson’s Journey

Trembling EMT: My Parkinson’s Journey” discusses the early onset of Parkinson’s and what the process looked like for Eric Aquino, an emergency medical technician who was diagnosed with the disease in 2018 at age 40. The podcast takes listeners through the diagnosis process, treatment, and clinical trials. Clinicians generally don’t have Parkinson’s when they treat the disease, so they may be unable to relate to patients. Listening to a podcast like “Trembling EMT” can provide insight into the journey of another person, who is both a patient and a medical professional.

Substantial Matters: Parkinson’s Podcast

In this podcast, the Parkinson’s Foundation not only provides information about the science behind the disease, it also discusses ways to live with it in a more peaceful away. For example, episodes such as “How Mindful Techniques Impact the Nervous System” talk about the benefits of practicing mindfulness. Focusing on the present moment makes it much easier to navigate mood disorders such as anxiety and depression. This podcast also offers a handful of episodes in Spanish, information about clinical studies, and deep brain stimulation.

Whether you are someone who is navigating the depths of Parkinson’s research or you’re interested in finding personal insights about the disease, podcasts offer a terrific way to access that information. While there is science on some podcasts, others involve casual discussions about the disease. It can help to hear other people’s experiences with the disease — and you don’t have to be a medical professional to host a podcast.

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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 Podcasts Make It Easier to Stay Informed appeared first on Parkinson’s News Today.

A Rock Steady Boxing Party Showed Me a Community that Cares

community

Christmas hung in the air, smelling faintly of cheese platters and wine. Dad and I had decided to attend a Rock Steady Boxing Christmas party. On the way over, he joked that it would “be a quick Christmas party because everyone’s drugs [would] wear off in a few hours.”

His attitude amazed me, as always. He isn’t one to complain. He’s much more likely to count his blessings and to be excited about the prospect of introducing me to his friends. 

We arrived early and watched green tablecloths making waves in the air while being molded onto the table. I wasn’t sure what was stirring in my dad, but I got the sense that he liked being among people who understood him. No one asked him why he didn’t intend to stay for more than two hours. If he couldn’t eat right away, it was quietly understood that he was timing his medications. And no one batted an eye if he suddenly found himself stuck to the ground. 

The power of community

Seeing my dad interact with the Rock Steady Boxing community surprised me. He had withdrawn from some social circles when he was diagnosed with Parkinson’s, but this barrier seemed to dissipate when we walked into the gym. Everyone knows and loves him. And he smiled in return, eyes twinkling like they do when he’s showing you that he cares about you (or that he is up to no good). 

And it wasn’t just his friends who seemed excited to see him. The gym owner was nearly bouncing off the walls when people started to trickle into the gym. His passion and excitement resounded throughout the hall. Working with Parkinson’s patients is clearly a passion of his. He cares for the people as much as he cares about boxing. And his volunteers are equally loving. 

By the time everyone arrived, piles of food were overflowing on the table. You could see character in the dishes. Dad’s Polish friend is famous for his perogi. We brought my mom’s classic cheese ball. The table was diverse, like the people who surrounded it. 

Parkinson’s disease and shyness

Everyone seemed a little bit shy as Christmas cheer bubbled in the gym. Maybe it’s because Parkinson’s targets your vocal cords and speaking becomes a little harder as the disease progresses. But Dad introduced me to everyone in the room, and it was obvious that he’s surrounded by a powerful crew. 

We walked around the gym. Dad punched every bag and showed me what some of the classes look like. I wondered if I might be able to volunteer at a gym that’s close to my home.

Between plates of food, Dad shared an interesting fact about everyone in the room. It’s clear that he greatly respects his peers. And I suspect that the love and respect are mutual.

Earlier in the week, Dad had taken me to a boxing class. Before each class, everyone gathers in a circle and shares a little bit about themselves and what they’re going through. It’s no wonder how the shared struggle promotes empathy and love. Dad joked that the girls talk a lot more than the boys. But everyone has something of value to share. And they do! 

While Parkinson’s disease is cruel and grueling in so many ways, sometimes it has the capacity to bond us, too. And I can’t help but wonder if the illness has the capacity to bring as much positivity as destruction. Whatever the case may be, it gives me hope and courage to see my dad at home among a crew that understands him. 

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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 A Rock Steady Boxing Party Showed Me a Community that Cares appeared first on Parkinson’s News Today.

Writing About Parkinson’s Disease Is Hard

writing

Writing about Parkinson’s disease is a cumbersome game.

I’m a journalist in my regular life, so I’m no stranger to telling complicated and emotional stories. But my lens is usually focused on others. I tell stories about accomplished athletes and faraway places that don’t affect me directly. But Parkinson’s disease (PD) does.

My last couple of columns revolved around people including Muhammad Ali and James Parkinson. That gave me an outlet to talk about PD without directly involving my dad. Learning about these heroes allowed me to put up a barrier between my heart and my words. But today I’m trying to let you in.

The truth is that sometimes I don’t want to talk about PD because it hurts to turn over these rocks. Talking about the disease forces me to turn inward and evaluate my own feelings. And while I’m incredibly grateful to be here connecting with you all, facing illness isn’t easy — even when it’s not my own.

My kind, sassy dad battles PD every day. And contributing to a column regularly feels like a constant reminder that he’s suffering. As strong and determined as he is, the ebbs and flows of the disease are always evident, glaring back at us like animal eyes in the dark.

An update on Dad

When I call, Dad’s voice sounds changed. It’s like Parkinson’s is forcing his entire body to slow down. His words come a little more slowly. But he’s still quick to laugh.

After his recent deep brain stimulation surgery, he’s finally getting the chance to go back to boxing. The structure, physical fitness, and community play a vital role in his world.

My little brother recently sent a photo of himself and Dad smoking their “old man” pipes. The photo made me giggle because I realized that after a few short weeks, Dad’s hair has grown back.

One of the scariest parts of seeing him undergo deep brain stimulation was that they shaved his hair. His big, fluffy head of hair has been a constant in his life. I’d never seen him without it. So seeing it come back so quickly provided relief, but also a bit of humor. Dad has always had great hair. It’s comforting to know that some things never change.

Which walls should remain standing?

Perhaps the hardest part of writing about PD is that I don’t want to invade corners of my dad’s life that should be kept private. Parkinson’s disease is a thief of so many things. I don’t want to take his privacy away, too.

Even Muhammad Ali talked about wanting to face the disease behind closed doors, because being seen shows the world that you’re struggling. Despite these fears, Ali carried the torch during the 1996 Olympics. Many were inspired by his courage; he shook as he lit the flame.

Like Ali, my dad has provided a window into his life. He opened up his world to us so that maybe someone else wouldn’t feel alone.

I know Dad is proud of me and the conversations we’re starting by talking about PD. I wanted to use this platform to get him to speak up a bit because he isn’t one to complain about his struggles. But I’ve never been someone who wants to create an exposé at the expense of another. That’s the greatest balance we must find as journalists: Does telling a story do more harm than good?

While sometimes I find it hard to verbalize the struggles associated with chronic illness, I also think that starting a conversation is vital to change. Suffering alone seems to increase the pain. Telling our story, however hard it may be, seems to offer a sense of connection to people who can relate.

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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 Writing About Parkinson’s Disease Is Hard appeared first on Parkinson’s News Today.

The Day Parkinson’s Disease Left the Room

rock steady boxing

“… [T]he power for creating a better future is contained in the present moment: You create a good future by creating a good present.” –Eckhart Tolle

Rock Steady Boxing is not just about boxing, sweating, moving, and exercise. More than once, the classes have allowed me to recapture a part of my former self from before my Parkinson’s disease’s (PD) onset. In the past, this has always been very personal and unique to me. In a recent class, I observed the other participants experiencing something similar in their own way. It was a sight to behold, truly an empowering feeling of joy shared by all.

Living in the moment

“If you aren’t in the moment, you are either looking forward to uncertainty, or back to pain and regret.” –Jim Carrey

The class was united for a few moments — I truly believed none of us thought about PD. During our warmup, Bob Dylan’s “Like a Rolling Stone” started playing. Spontaneously, we all started singing the lyrics. There were smiles all around and one of the boxers took out his harmonica and played along. The feeling was palpable. For those moments in time, none of the participants had PD. We were fellow athletes having fun, singing along to the music (yes, even I sang despite being unable to hold a tune), and living in the moment. The feelings I experienced in that class still resonated with me days later.

Click here for a video clip of the magic moments. Thank you, Sensei Michelle and assistant coaches Rita and Michael, for giving the boxers a respite from our troubles that day.

We shouldn’t underestimate the power of music and the camaraderie fostered by Rock Steady Boxing. What happened in class that day could not be scripted. We were all caught up in the moment, oblivious to any burdens we walked into the room with.

Who are we?

Rock Steady Boxing is a community of people — coaches, patients, and volunteers — who share collective experiences. We are all united in fighting back against an incurable and progressive disease. The moments like those experienced in that particular class keep me coming back. This is what makes Rock Steady Boxing such a healing and unique experience.

“Alone, we can do so little. Together, we can do so much.” –Helen Keller

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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 The Day Parkinson’s Disease Left the Room appeared first on Parkinson’s News Today.

The Games People Play

I had every good intention of writing a column about my first experience with Rock Steady Boxing last week, but alas, things don’t always work out as planned.
My first attempt
A week ago, I walked into a gym settled in a nearby valley on a beautiful farm. I was pretty tired, as I had one of my Parkinson’s-induced fitful sleeps and awoke with a migraine. I thought I could pull off my first boxing-with-Parkinson’s encounter, but I left Higs Gym holding an empty paper cup in front of me all the way home in case I suddenly needed to throw up into it. I don’t remember much of anything from that night because I felt so sick. I got home at 7 p.m. and crawled right into bed and didn’t wake up until 8 a.m. the following morning.
My second attempt
So … last night was my second attempt. Part of me was nervous about trying again, but I pulled open the doors and walked in. 
I was a little early. My husband and I pulled up stools and watched the end of the kids’ jiujitsu class. The children sat on the mat, listening to their instructor tell them about David and Goliath. I watched some people I had met the previous week come in. Within a few minutes, a changing of the guard occurred as the kids exited the gym and the Parkinson’s boxers took the mat.
Divided into two teams, we started by pushing a padded cylinder across the mat. It was a little tougher than it looked. I couldn’t figure out why everyone on my team (all men) were glaring at me. Were they mad a girl was on their team? I passed another teammate with the same expression, and it dawned on me as if someone had hit me over the head with a bat: The masked face! The stone face! They have it, too!
I have written about PD for over 12 years, talked about it for over 14, and lived with it for probably over 30. However, I have only really known a handful of people with it, and I haven’t spent oodles of time with them to compare symptoms. But last night, I saw 12 other people wearing my masked face. I don’t know why, but I wanted to sing and shout! Call it crazy or call it community. Either works.
After our team won, we were divided into groups of two and rotated to six different stations: sit-ups, climbing a cargo net (which just about ripped my hands off), rope thingies, leg lifts, jump-rope, and more … 
Community
We continued through other drills and finished off boxing (noncontact) with the instructors. It was harder than I expected, requiring stamina and perseverance I forgot I had. The class was 75 minutes but seemed like 20 or 30. I drank a lot of water and sweated a lot, but I didn’t get sick. I wasn’t fast, but I finished. And I’m goin’ back tomorrow. Call me crazy or call it community. I liked the community.
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