As promised, I am focusing this article on my Personal Trainers, Kate Spack and Mike Barrs. In a previous article, I shared my frantic search on the Internet for exercises I could do for my Parkinson's Disease (PD). It was three years before Boxing 4 Health opened its doors, and I didn’t want to join a big gym as I was self-conscious about my symptoms.

I phoned around to see if any of the gyms would send a Personal Trainer to my house. Luckily, I found one. They sent me this bubbly, positive, incredible young woman named Kate Spack. The moment I met her, I knew I was in good hands. She has a gentle yet inspirational aura (if you will). I now count her and her partner in life and business, Mike Barrs, as good friends.

Kate quickly discovered the exercises that would help me the most. She has been my Personal Trainer for 10 years, and Mike has been my other Personal Trainer for two years. They modify my exercise program according to how I feel and whether my symptoms have progressed. They have improved my balance, strength, endurance, flexibility, and mobility. I genuinely believe that I would not have been in a place to join the boxing gym if I hadn’t had them in my corner.

I see them twice a week, and I will continue to do so for as long as I’m able or when a cure for PD is developed. Next time, I’ll delve into the world of running and Parkinson’s.

Dianne Bramble is a Registered Nurse in Ottawa, Ontario, Canada. She left nursing and got her certification in Health Coaching, Cognitive Behavioural Therapy, and Personal Training. Dianne’s focus is on people with chronic conditions like Parkinson’s. She’s 55, married with two kids, a dog, and a horse. She was diagnosed with Parkinson’s in September 2013. Her blogs will focus on mental and physical health.

“To make decisions about the care the physician recommends and to have those decisions respected. A patient who has decision-making capacity may accept or refuse any recommended medical intervention.” – Patient Right #4.

I use this right a lot. Initially, when I was diagnosed with Young Onset Parkinson’s Disease (YOPD), I felt ignorant and reluctant to have opinions. After all, my Movement Disorder Specialist (MDS) had spent years studying my condition. He must have seen dozens of cases like mine, and if I just followed his recommendations, I’d be fine, right? But as time went by and our relationship matured, the dynamic changed.

“It’s your body, Esther; you have to make the decisions,” he told me—half out of frustration, I think. He was right. He knows the disease, but he doesn’t know me. He doesn’t know how I feel, what my struggles are, what I can tolerate, or what I absolutely can’t lose. I have the capacity and responsibility to make decisions for myself.

My MDS always says he’s the coach; he gives me the plays, but it’s up to me which ones to run. At first, that was scary, but it became empowering. Sometimes, I agree with what he recommends, and sometimes, I decline. There are no hard feelings. He respects my decisions.

Respect is a word that comes up a lot. Mutual respect is the foundation of effective communication, but it’s frequently lacking in the doctor/patient relationship. I’ve been dismissed, gaslit, and talked down to. I’ve lived and worked with doctors all my life. They are experts in diseases, but I’m an expert in me. Both have value, but I call the shots.

Recognize you’re an expert, take back your power, and give—and expect—respect in return. This is what care should be like.

“Attitude is a little thing that makes a big difference.” – Winston Churchill

As each New Year rolls around, I’m reminded of the opportunities for change and growth in my life. Aside from the standard resolutions many of us tend to make (and often break) such as “I’m going to eat healthier, get more exercise, go to sleep earlier, quit smoking, etc.” what’s helped me most is to focus more on changing the way I think and cope when dealing with what life’s thrown at me, as in my case, a life with Parkinson's.

For 2025, my goal is to not let negative thoughts and fears overtake me. I’m not going to let myself worry more than I have to.

Navigating the Emotional Landscape

In the 17 years since being diagnosed with Parkinson’s, I’ve often grappled with anxiety and uncertainty about the future. The fear of what’s to come can be overwhelming and I've often asked myself questions like “What if my symptoms worsen?” or “What if I lose my independence?”, even during periods when I felt my symptoms were relatively stable.

I've found that this constant worry can cast a pretty dark shadow on the hope and positivity I strive to cultivate. It’s easy to allow fear to take the wheel, steering us away from enjoying the present moment.

Letting Go of Fear

This New Year, I’m committed to letting go of fears about things that haven’t yet happened. Life with Parkinson’s is unpredictable, and I know it doesn’t come with any guarantees. I’ve learned the importance of rolling with the punches, and when real challenges arise, that’s when I’ll summon my strength to rise to the occasion and keep moving forward.

I’ve come to realize that fear doesn’t serve me well in this journey. Instead, I’ll focus on my resilience and the things I still cherish—my relationships, my passions, and the small joys and moments that each day brings.

Building Connections and Community

I also plan on continuing to connect with others navigating their own Parkinson’s journeys. I believe there’s incredible power in sharing our experiences and supporting one another. If you’re also looking to connect with others or seek support, I encourage you to reach out. There are many great people and resources available, so you don’t have to navigate it alone.

Together, let’s embrace 2025 with a renewed mindset, focusing on strength, community, and the moments that make life beautiful, despite the challenges we face.

Internet trolls are everywhere, a term I learned from my kids. They are most often used to describe those who spread hate on the internet. I'm more worried about people being taken advantage of. It's a real problem, and I'm afraid our shared condition has made us look like easy targets. 

I avoided social media for several years and just recently reentered the cyber world to connect with the Parkinson's community. It's been both comical and annoying how persistent people can be. I've been approached by people messaging saying they were Michael J. Fox, Paul Macartney, and someone claiming to be a crowned prince. All are asking for a video call or other personal information. Fortunately, I wasn't born yesterday. Delete and block work just fine. 

 These people are desperate and don't have anything better to do than prey on people they see as easy targets. Some of these unwanted attempts to contact me have come through other friends' story feeds. That is a dirty trick. Don't be fooled.  Again, I am on social media to connect with my growing network of friends within the Parkinson's community. And to spread awareness. It is common knowledge that the elderly are also at risk of being targeted by this kind of fraud. We, the people with PD. Might also look like easy targets. Most of us are very proud of our advocacy, and we display it openly on our media pages. 

Yes, and these despicable people are convincing. They steal logos from the real deals and have no qualms about using banners and logos from reputable companies to make themselves look legitimate. 

So please be careful who you trust on the internet. Only accept friend requests from people you know and double-check with others if possible. Never give out any personal information, including obvious ones. Don't believe everything you read on the internet. 

Social media is a great place if you're careful. It's better to be safe than sorry.

The emotional toll as a caregiver was devastating. I went through a variety of emotions, uncertain of what the future would bring for my mother, who was diagnosed with Parkinson's Disease. At the same time, I was unsure of my own future—what life would be like as a caregiver or how I would cope with the potential loss of my best friend and mother.

My mother had Parkinson's for 15 years, but I wasn’t aware until the seventh year, when her symptoms became progressively more difficult for her to hide from the family. I feel she may have tried to conceal her diagnosis because she didn’t want to burden us, which would never have been the case. Or perhaps she simply wasn’t fully aware of or didn’t understand the progression of the disease herself, as even medical professionals seemed unsure of what the future would look like.

Even today, as an advocate for a Parkinson's cure, I find it hard to relive memories of my mother's struggle. The final four years as her caregiver were the toughest for me. Anxiety, sadness, stress, depression, and hopelessness crept into my life, but I tried to hide these feelings from my mother, whom I felt needed only care and support during her struggles. I often say that I wouldn’t be the man I am today without my mother's sacrifices. She was a teacher with a master's degree who gave up her career to raise my brother and me.

I wouldn’t have achieved most of my academic success and professional acknowledgments without my mother cheering me on, from the good times to the tough ones. She was always by my side, encouraging me 24/7. She was and always will be an inspiration. At times, she sacrificed her health but kept her Parkinson's diagnosis from me for several years because she didn’t want to burden the family. Many days, I wish she had shared it earlier, and it makes me wonder if there was something that could have been done to slow the progression of the disease at that time.

Every journey is unique, but every person fighting this disease inspires me to keep pushing for a cure. Advocacy helps me cope, and my mother lives on through everyone I meet. Her legacy, and the lessons I learned from her, continue to inspire me to never forget how important she was—not only to me, but to everyone she touched.

My journey continues today, from being a caregiver to being an advocate. I am still in shock, filled with questions about what happened, why it happened, and if there was anything I could have done differently as Parkinson's progressed so quickly for my mother. We still don’t know why it happened the way it did.

Yet, out of my darkness and loss comes some positives. I've met so many warriors battling Parkinson's disease, heroes I fight alongside across the world to ensure no one is ever alone. I never want anyone else to go through what my family and I did, and I will continue to fight for a cure, now more than ever.

Speaking from my experience as a person with the disease and someone who has worked with others who have it, PD affects so much: rhythm and cadence, tempo and affect volume (vocal and movement), and control. We consider these listed in musicality but not as often in the context of our movement.

How does loss of rhythm and cadence impact control over the body as a PD Athlete?
It removes" flow" and strips you of any pattern, sequence, or tone to ascribe your movement. It causes you to feel "herkie-jerky," akin to a child pressing keys on a piano for the first time. There may be an occasional semblance of pattern for movement, but smoothness or that feeling of "just right" will escape you.

With PD, we seem to be absent of flow but not removed. We witness this in athletics and hear it in concerts of artists the same, those who are in a "slump" or going through "it." They may go without a catch, hit, or goal or have a concert that doesn't resonate with the audience. They have lost the flow.
But, as with professional athletes, we have the opportunity and obligation to rise to such an occasion and regain every ounce we can. But how?

Self-exploration, play, joy, fun, and adaptation.
Indeed, we are enjoying a sled ride of descending adventure. But as we glide on down, may we glance to each side and take in the beauty around us.

Each journey is different, unexpected, and challenging. But if we choose to experience it as such, it's much like a crescendo amid a beautiful melody: powerful and flexible, fulfilling and cleansing.

Now, I challenge you to hear the music of your life and your soul more than you listen to what ails you. Find your flow and live.

Interest in "exoskeletons" has been growing rapidly, with daily advances in the field offering new hope for patients with walking impairments. However, the high complexity of these devices also means they come with limitations, such as high costs and difficult maintenance, making them less accessible. Moveo aims to change this with their innovation: the soft exoskeleton ExoBand. It is a passive (no motors or batteries), wearable  (1 lb)  device that works like a walking brace, featuring a belt and two leg loops. It’s designed to store energy during the first phase of walking (hip extension) and then release it during the following step: this boosts the movement of the hip flexors, improving the ability to walk more effectively and more freely.

In people with Parkinson’s and other neurological conditions, poor gait control often leads to shorter walking distances, increased fatigue, and a higher risk of falls. This reduced mobility can limit social interactions, exerting a detrimental impact on psychological well-being. The ExoBand aims to break this cycle by improving walking ability.

Clinical studies (freely available here) have shown the ExoBand’s effectiveness, demonstrating reduced energy expenditure, better walking patterns, increase in wakling distances, and improvements in balance and stability for individuals with neurological disorders, including Parkinson’s. The device has also shown a positive impact on gait rehabilitation sessions. People can walk faster, better, and for longer distances.

Since receiving first regulatory approval in 2020, more than 1,200 ExoBand devices are in use across Italy, Europe, the UK, the USA, and Australia, making it a widely trusted solution for improving mobility.

Fausto Panizzolo, the inventor of ExoBand and CEO of Moveo, along with Claudio Semplicini, neurologist and Moveo Medical Director, introduced ExoBand to the YOPD network during a video conference, which is available here.

Misconceptions of PD

The younger generation has brought Young Onset to light through social media. There have been misconceptions that Parkinson's disease is the "old man's disease," which is entirely false, misleading, and wrong. Young-onset is a reality; more voices are reaching borders and breaking leaps and bounds worldwide. Technology has changed how we think, view messages, learn stories, and break barriers to advocacy. Every one of us has a story, but in 2024, we can share it instantly, reaching far beyond any conception of the meaning of social media that could have ever been predicted.

The downside of social media

Many rely on social media to earn a living. Those in the Parkinson's community can stream live on multiple sources to gain followers, advertise, and get support to pay for their medications. Sadly, the same social media sites that can help us can also hurt us. Some receive rude and unprofessional responses; others question the purpose of a post, and at times, that may have us second-thinking that post we just sent moments ago.

In one scenario, an individual who inspires me daily was banned on TikTok because a few people reported that she was drunk or on drugs when, in fact, she had Parkinson's tremors, and the fight began to have her reinstated. Thankfully, she was, but everyone's voice in the Parkinson's community matters. These all too often social media trolls, misconceptions, or just lack of awareness of Parkinson's has its pitfalls. The good news is we can fight them, advocate, and join in bringing attention to the negatives and flipping them into positive lessons.

 

George Ackerman, PhD from Brooklyn, NY, now in Florida, lost his mother, Sharon Riff Ackerman, due to the progression of  Parkinson's Disease on 1/1/2020. To honor her, he began TogetherForSharon® to spread awareness. Today, https://www.togetherforsharon.com/ reaches many, where George interviews people from the Parkinson's community.

I wrote this in 2011, before my official diagnosis. I was a 25-year-old kid fresh off a 5-year-long burnout cycle as a 911 dispatcher, with calls gone bad echoing through my head. I admire my mentality then and sometimes imagine myself as that naive young buck if not to escape this occasionally, to remind myself that everything is ultimately okay.

~

They say all things in nature must be leveled out or balanced.  Take, for example, the ocean's tide; when it's high tide here, it's low tide in Asia.  You can see it in something as simple as the seasons.  In summer, it's warm, so inevitably, winter must be cold.  This concept echoes through every aspect of humanity and seems to be accepted in all cultures.

In Chinese tradition, you see the ying and the yang, the perpetual cycle of good and evil.  In Egyptian lure, we hear of your entire life being measured against the weight of a feather to determine your placement in eternity.  Native American religions surround the idea of the balance of nature and teach the consequences of tilting the scale too far.

I ventured to Cancun with my local church when I was only fourteen, where I helped renovate a dilapidated church and rebuild a family home.  This is when I first realized the magnitude of this balancing act.  On the strip, you have paradise, where people from around the world come to relax and let loose.  Then just on the other side of a thin bay lives the heart of Cancun, the people.

In contrast to the lavish hotels on the strip, most Cancun-ians live in shacks tightly packed into communities that are intertwined by crater-filled dirt paths.  The people lucky enough to have jobs get to spend their entire day serving tourists with more money than they will ever have. You would think this life would be like hell on Earth, right?  Wrong, these were some of the happiest people I have ever met.  The scale for them has tilted away from wealth and prestige, causing the other side of the scale to rise.  The folks I met had close-knit, loving families and never-ending smiles. 

I've been thinking about this a lot lately.  Life has been good to me. From childhood to current years, I have been and remain blessed.  I love my life and wouldn't change a single day. In being so blessed, I find myself what would be a cursed man.  I've been recently diagnosed with Parkinsonism.  A blanket term that includes such wonderful things as Parkinsons Disease (PD), Essential Tremor, Multiple System Atrophy, and many other degenerative diseases.  My neurologist (the best around), Dr. John Goudreau of MSU) is one-by-one ruling out all other disorders and is heavily leaning on a diagnosis of, and currently treating me for, PD.  At my age, such a diagnosis is rare and takes several years to be monitored as no definitive testing is available.  So, in the meantime, my days are slowly becoming longer and harder, and my body seems to be turning against me.  I do everything I can in a day to hide my shaking hands and retain the strength to do all that is needed of me.

But you see, I came to a realization long ago.  I know that no matter how hard my life may get, in some way, I will be compensated.  I hear people say they can't imagine what I must be going through, or that they feel for me.  Well friends, save your pity for a weaker man.  I have history and nature on my side as evidence that my life will only get better if it's going to get worse.  And you know what? I'm okay with that.

As a friend what I want all of you to know is the following: Life has its struggles, hard times, bad luck, and downright horrible situations. But no matter what religion you follow or whatever you believe, one thing will remain true for both of us.

Everything's okay.

 

Nathan Lee Ward, a black belt since age 32 in Tang Soo Do, is a Certified Personal Trainer, Nutritionist, and Corrective Exercise Specialist, with a focus on Parkinson's exercise.

With three years training under Darbe Schlosser of Motorvation USA, he's a unique blend of goofball and empathetic soul.

I promised a while ago that I would talk about all the things I do to keep fit and to slow down the progression of Parkinson's Disease (PD). So here it goes. I’ll list each activity and spend time on each one in separate articles:

●      Boxing

●      Personal Training

●      Running

●      Equestrian Riding

Boxing has become a passion of mine, and I’d like to back up a bit to explain how I came to this passion.

When I was diagnosed in 2013, my neurologist didn’t tell me to exercise. In fact, he didn’t tell me much of anything. After having my pity party for a couple of days, I threw myself into discovering everything I could about PD. I kept coming across articles about the benefits of exercise, particularly boxing.

I searched for a boxing studio in Ottawa, but there wasn’t one available. I emailed every Rock Steady business nearby to see if they had plans to open one here. They said yes! While we didn’t end up with them, Boxing 4 Health has been amazing. It has helped me get in the best shape I’ve ever been in, and anecdotally, my symptoms are not advancing very fast.

I’ve met and made many friends through boxing, although I lost one last year. Boxing gives me the opportunity to let it all out. That bag doesn’t stand a chance!

I don’t remember how long I have been a member, but I’m so glad I am one. I go four times a week, and I wish I could go more often. As far as exercise goes, this is so fun that you don’t even feel like you’re exercising.

Next time, I’ll focus on my personal trainers. They’re awesome!

Dianne Bramble is a Registered Nurse in Ottawa, Ontario, Canada. She left nursing and got her certification in Health Coaching, Cognitive Behavioral Therapy, and Personal Training. Dianne’s focus is on people with chronic conditions like Parkinson’s. She’s 55, married with two kids, a dog, and a horse. She was diagnosed with Parkinson’s in September 2013. Her blogs will focus on mental and physical health.