I had the gift and honor of recently being the keynote and emcee of PMD Alliance's All In Summit in Austin, TX. The theme was support—and within that, two fascinating ideas: 1) rebranding Parkinson's disease to help us get what we need to live our best and 2) learning to accept the current base reality of PD. Part of that reality is accepting there currently is no cure. Another part is remembering that the decisions we make every day—physically, socially, emotionally, and spiritually—deeply affect how well we will live with PD. That's acceptance. 

Acceptance is a journey, not a destination. For those living with Parkinson's disease (PD), it is a path, at times, littered with loss, adjustment, and unexpected growth. For many, it begins in the shadow of denial, where trembling hands or slowed movements are first ignored, rationalized, or hidden. But denial, while momentarily comforting, is a trap. It isolates, creates shame, and blocks the path to the profound gift acceptance offers: freedom. 

True acceptance is not resignation. It is an act of courage—a declaration that life, though altered, can still be exciting, creative, and profoundly worth living. It empowers individuals with PD to step forward, not defined solely by their diagnosis but by their humanity. Acceptance reclaims identity from the grip of stigma and fear, opening doors to connection, joy, and purpose. 

Through the lens of my work with the PD community, I've witnessed the transformative power of storytelling and improvisation. These tools, deeply rooted in our neurological wiring, invite participants to embrace unpredictability, connect authentically, and celebrate their strengths. They bridge the gap between external perceptions of PD as solely a "movement disorder" and the internal struggles of those living with it—shame, frustration, and the fear of not belonging. 

Acceptance doesn't erase the challenges of PD, but it illuminates a path forward. It transforms isolation into belonging and despair into possibility. In a world where denial often dominates, embracing acceptance fosters resilience—not just for those with PD, but for everyone. Together, we thrive when we see one another fully, when we accept what is, and when we act with compassion to create what can be. 

Let us all accept the gifts of support and celebrate the stories that bring us together. One way to do that is at our Christmas Movie Hero's Journey every Friday through the holiday season. It's a free, fun way to explore the stories that help shape this season. ALL are welcome. Register and find out more here: https://www.yesandexercise.org/christmas. 

It's hard enough to have Parkinson's. We deal with tremors, stiffness and rigidity, depression, and anxiety, and then we can add things like dementia, hallucinations, and delusions. As if we didn't have enough to deal with! Hallucinations and delusions are scary things to think about. 

You are more likely to experience these things the longer you have PD, have dementia or memory problems, and some medications can cause them. A hallucination is when a person sees, hears, feels, smells, and even tastes something that isn't real or that other people aren't experiencing. (Parkinson's UK) 

About 20-40% of people with PD will have hallucinations or delusions. They can also experience illusions—seeing things that are there but not as they appear. An example of this is clothes in a closet looking like people. There is also something called delirium. This is reversible, and it involves attention and concentration. Both or one of these are altered and can lead to changes in behavior and thinking. It usually develops quickly and resolves after treating the underlying condition, like an infection. (Parkinson's Foundation) 

A delusion is a strongly held thought or belief that isn't based on evidence. They can include paranoia, jealousy, grandiose beliefs, and wrongly identifying places and objects. (Parkinson's UK) 

We've already established that experiencing a hallucination or delusion is genuinely frightening. You can experience several types of hallucinations. Auditory and visual hallucinations can be the scariest of them. Auditory hallucinations are things you hear, but other people around you cannot. These can be voices, music, doors opening and closing, etc. Visual hallucinations are things like seeing people, animals, or anything you can see in real life or dreams. No one else in the room can see them. Tactile hallucinations include things like the feeling of bugs crawling on you. You can feel like someone or something is near you when there is nothing there. (Parkinson's UK) 

Experiencing a hallucination for the first time is remarkably frightening and confusing. If you start to hallucinate, you should tell your neurologist/doctor/movement disorder specialist so that they can help determine what's causing them and help either manage them or get rid of them. If you experience a hallucination, try not to panic. Take some deep breaths and tell yourself that you will be okay. Hallucinations cannot hurt you or others, and they will pass. Keep a diary of when they happen and give that information to your neurologist. There are some things that you can do to help. 

Focus your attention on an activity to distract yourself from the hallucination. This can be anything like reading, doing a puzzle, watching TV, or playing a video game. Engage with the hallucination—write about it, draw it, or talk about it with someone. Practice breathing techniques like box triangle breathing. Exercise. (Parkinson's UK) 

You don't have to let hallucinations control you. Like PD, we have the choice to control it or not. You don't have to do this alone. There are groups, places, and therapists who can help. Reach out, and don't go through this alone. You are not crazy, and it's not your fault. 

Delusions are the other issue that we may experience. Aren't we lucky? 

They can be more challenging to deal with than hallucinations, and they may involve the people you love. If you experience paranoia, you might think that someone is trying to hurt you in some way. You may also think that people are conspiring against you in some way. You may experience jealousy regarding a spouse or other people close to you. You may think your spouse is having an affair. You may experience grandiose thoughts and think you have superpowers or that you have a relationship with a famous person. You may not recognize the people and objects around you. (Parkinson's UK) 

Delusions are very problematic for those who care for us. We may not realize that we are experiencing them. It's essential for those who care for us to know what delusions and hallucinations look like so that if we can't tell our neurologist, they can. If you're fortunate, you can experience both hallucinations and delusions. (Parkinson's UK) 

Other things we can do to help ourselves are: 

• Meditation 

• Create a Good Memory box or book 

• Get as much sleep as you can (I know, that's not easy) 

• Improve lighting to reduce shadows 

• Your diet is also very important—Eat healthy meals and snacks! 

• Talk to your loved ones—They want to help. (Parkinson's UK) 

All in all, it sucks to have PD, and the chance that we might experience hallucinations and/or delusions makes it even worse. However, we must remember that we are not alone on this journey. We are a strong, loving, supportive community, and we are in this together. There are so many of us that you can reach out to. This disease can be brutal, but it can also lead to many positive things. So, take this article as it was meant to be taken—informative and, I hope, not too scary. I am here for you, as are many other people. Don't be afraid. Be informed. 

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 56, 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. 

It was a casual remark made by a good friend over lunch that got me started. After 12 bumpy years of Parkinson’s disease (PD), I completed deep brain stimulation (DBS) surgery at Mount Sinai West in New York. I quickly saw improvement in my dyskinesia, dystonia, and cognition. My good friend Gary remarked in amazement at the improvement created by the pulsing electronic device buried in my chest, “It’s like you’re some kind of superhero who gained his powers through DBS!” 

I was inspired. Over the months that followed, I developed a relatable comic book character who is perfectly fictional: the superhero with Parkinson’s disease, NeuroNinja. He gains powers in a freak collision between an MRI machine and a quantum computer. Despite his many new powers, the one foe he cannot overpower is his Parkinson’s! Like many of us, he is “unsteady and yet unshakable” in his commitment to the Parkinson’s community. 

Over time, NeuroNinja learns to use his symptoms to shake up his enemies. Still, he may be defeated by his many symptoms. Thankfully, when NeuroNinja runs into trouble, he can regain his powers by being surrounded by the Parkinson’s community. 

NeuroNinja faces many opponents, including Miss Folding (AKA misfolding proteins), who turns folding paper (origami) into dangerous weapons. He also battles Brain Fog, the brutish Rock Steady boxer. 

In my excitement, I was motivated to create a script for the first issue, the origin story, instructions for visuals, and a clear picture of the finished product. I then recruited a talented comic illustrator to draw keyframes. 

In November, I created a Kickstarter crowdfunding project to raise sufficient backing to fund illustrations, printing, and marketing. I was so gratified to receive the backing of 53 members of the Parkinson’s community. More importantly, more than 1,000 people have visited the site on Kickstarter. I am very grateful to all who backed our project and are helping to bring this comic book to life, particularly our talented illustrator. We are working on creating the finished NeuroNinja Episode #1: The Origin Story. 

This project has kept me alert, engaged, and excited. I think and dream about NeuroNinja. 

I do not sponsor major research like Michael J. Fox or achieve athletic feats like Jimmy Choi. In our own way, we are hoping our NeuroNinja Comics can shed light on and lift the Parkinson’s community. I also hope to partner with a Parkinson’s organization that shares our message and seeks a unique way to raise funds. Parkinson’s advocacy can take many forms, and we each can take a stand and remain “unsteady yet unshakable!” 

Yes, I met my goal on Kickstarter. I am very appreciative to the entire Parkinson’s community. 

Exenatide Falls Short: What's Next for Parkinson's Breakthroughs?

Recently, we received the long-anticipated results from the Phase 3 Exenatide trial, which tested the diabetes drug exenatide (Bydureon) for Parkinson’s disease. Unfortunately, the trial did not achieve its primary goal of improving motor symptoms, leaving us with 14 clinical trials in Phase 3 for Parkinson's, only two of which target disease  modification, with the remainder focused on symptom relief.

According to the “Hope List” compiled by Dr Kevin McFarthing, which tracks Parkinson’s research worldwide, only two other drugs remain in Phase 3 with the potential to disease modification: Annovis Bio's Buntanetap and Ambroxol, a repurposed over-the-counter cough medicine.. Although there are additional drugs in earlier phases (Phase 2 and 1), they remain years from completion. However, we hope to learn soon if these two disease-modifying treatments meet researchers' expectations and could eventually make a meaningful impact for people with Parkinson's.

What Happened with Exenatide?

The Exenatide-PD3 study showed no significant difference in the progression of symptoms between participants taking exenatide and those on a placebo. This trial, conducted in the UK with 194 participants over 96 weeks, tested the drug's ability to slow Parkinson's progression but did not produce the desired outcome. 

What Are the Two Other Drugs in Phase 3?

Buntanetap

In July, new data from a Phase 3 trial revealed that buntanetap, developed by Annovis Bio, showed promising results in improving motor function in Parkinson's patients diagnosed more than three years ago and those experiencing balance and gait issues. After six months of daily treatment, the drug halted cognitive decline, even showing improvements in patients with mild dementia. Buntanetap works by reducing toxic protein clumps tied to neurodegenerative diseases, and the trial confirmed it as safe and well-tolerated.

Earlier, Phase 1/2 trial data laid the foundation for this Phase 3 trial, showing buntanetap's ability to outperform a placebo in enhancing cognitive and motor skills in Parkinson's patients while also reducing overall disease severity on the MDS-UPDRS scale. Additionally, treatment lowered levels of TDP-43, a harmful protein buildup similar to alpha-synuclein in Parkinson's. Based on this Phase 2 data, the FDA provided positive feedback on the company's plans to pursue a Phase 3 trial for buntanetap in patients with later-stage Parkinson's.

Ambroxol

The next announcement on the Phase 3 clinical trial of ambroxol as a treatment for Parkinson's disease is expected this autumn. Led by Professor Anthony Schapira at University College London (UCL),  the trial has faced delays due to necessary drug reformulations and finalising contracts with research centers. This two-year, placebo-controlled study will involve 330 participants across 10-12 sites in the UK, with a focus on whether ambroxol can slow Parkinson's progression.

Ambroxol, commonly used as an over-the-counter cough medicine, has shown promise in early trials due to its potential to enhance the enzyme GCase, which aids in breaking down protein clumps associated with Parkinson's. In a Phase 2 trial, the drug increased GCase levels, reducing toxic protein buildup in cells, which is a known factor in Parkinson's neurodegeneration. If the ASPro-PD trial confirms that ambroxol can slow Parkinson's progression, there will be a concerted effort to make the treatment available as soon as possible.

More PD News Snapshots

Data from Landmark Michael J. Fox Foundation Study Shows Impact of Promising Parkinson's Therapy

In October 2024, Roche announced promising results for a new therapy, prasinezumab, which may help slow the progression of Parkinson's disease. Data from the Parkinson's Progression Markers Initiative, a long-term study by The Michael J. Fox Foundation, showed that patients treated with prasinezumab had at least 40% slower disease progression. This therapy targets a brain protein linked to Parkinson's and showed particular benefits for motor symptoms. To further explore its potential, Roche has launched the PADOVA trial with over 500 participants, bringing hope for new treatments and, eventually, a cure for Parkinson's.

New 24-Hour Parkinson's Treatment Approved by FDA: What You Need to Know About VYALEV

The FDA has approved VYALEV™, a new treatment for adults with advanced Parkinson's disease that provides continuous relief from motor symptoms for 24 hours through an under-the-skin infusion. This innovative medication combines levodopa and carbidopa, two common ingredients used to manage symptoms like tremors and stiffness, and it offers steady symptom control without the ups and downs associated with traditional oral medications. Designed for those who experience fluctuations in their symptoms, VYALEV™ has been shown in clinical trials to increase "on" time (periods of good movement) by an average of 2.72 hours without troublesome side effects. The treatment is delivered via a small pump, allowing for personalized dosing throughout the day and night. While it does have some mild to moderate side effects, VYALEV™ represents a significant advancement in managing Parkinson's disease and improving patients' quality of life. 

Ophthalmic acid as an alternative to dopamine in motor control

A team at the University of California, Irvine, has discovered that a brain molecule called ophthalmic acid can act like dopamine in controlling movement, offering a promising new direction for treating Parkinson's disease. This molecule binds to calcium-sensing receptors, improving movement in Parkinson's mouse models for over 20 hours—far longer than the 2-3 hours typical of the current dopamine-based therapy, L-dopa, which also causes side effects with long-term use. This breakthrough suggests that dopamine isn't the only neurotransmitter managing movement and opens doors to treatments that could work through a previously unknown pathway. Researchers are now exploring ways to increase ophthalmic acid levels in the brain as a potential alternative therapy.

Cancer Drug Shows Promise in Blocking Harmful Protein Spread

Researchers have found a protein called Aplp1 that helps harmful proteins associated with Parkinson's disease spread in the brain. Interestingly, a cancer drug already approved by the FDA can block this process in mice by targeting a related protein called Lag3. When both proteins were blocked, the spread of these harmful proteins was reduced by 90%, potentially preventing damage to the brain cells responsible for movement. This suggests that the cancer drug could be repurposed to treat Parkinson's disease. The next steps involve testing this treatment on mouse models for Parkinson's and Alzheimer's, which could lead to new therapies to slow down these diseases.

High-intensity Exercise May Reverse Neurodegeneration in Parkinson's Disease

A recent small study suggests that intense exercise could not only slow down but might also reverse brain damage caused by Parkinson's disease. While earlier research showed exercise improves PD symptoms, this study is the first to demonstrate actual changes in the brain. Ten participants with PD completed a six-month high-intensity aerobic exercise program, and brain scans revealed healthier dopamine-producing cells that communicated better after the program. Dopamine is crucial for movement control, and these findings indicate that exercise may directly protect and repair brain cells rather than just treating symptoms like current medications do. This study highlights the importance of exercise in managing Parkinson's, suggesting it could have a more significant impact on brain health than previously thought.

$50M raised to advance brain stimulation device

Inbrain Neuroelectronics has raised $50 million to advance its brain-computer interface (BCI) technology, aiming to improve treatments for neurological conditions like Parkinson's disease. Using ultra-thin graphene electrodes, this BCI can adaptively stimulate specific brain areas based on real-time activity, aiming for better outcomes with fewer side effects than current deep brain stimulation (DBS) devices. The technology, recognized as a breakthrough device by the FDA, has shown promise in clinical trials and is also being tested for other conditions like epilepsy and brain cancer. Partnering with Merck KGaA and Imec, Inbrain plans to scale production and further its impact in neurology.

Cerevance's drug solengepras helps reduce off-time 

In a recent trial, Cerevance's new oral drug, solengepras, showed promising results in improving the quality of life for people with Parkinson's by significantly reducing "off time"—the periods when symptoms like tremors and uncontrolled movements return despite medication. The Phase 2 trial included 141 patients who added solengepras to their standard Parkinson's treatments, with those on higher doses experiencing a reduction in off time by up to 1.6 hours, along with increased "on time" when symptoms were better managed. The drug also helped reduce sleepiness, was well tolerated with only mild side effects, and is currently being further tested in ongoing trials.

Right-Sided DBS: Effective Parkinson's Treatment Without Speech Loss

A recent study suggests that stimulating only the right side of the brain with deep brain stimulation (DBS) may help alleviate movement problems in Parkinson's disease without significantly impacting speech abilities. In contrast, left-side stimulation was associated with more noticeable speech difficulties. This finding indicates that unilateral DBS—stimulating just one side of the brain—could be a safer option than the traditional bilateral approach, which encourages both sides. Conducted by researchers at the University of Alabama at Birmingham, the study is part of the NIH's BRAIN Initiative and points to a promising, less invasive DBS approach that may help Parkinson's patients manage motor symptoms while preserving cognitive functions like speech.

Potential of Device-Assisted Therapy for Advanced-Stage Parkinson's Disease

At the 2024 International Congress of Parkinson's Disease and Movement Disorders (MDS), researchers presented promising results from the DIVE-I trial, a small study exploring a new device-assisted therapy for Parkinson's disease. The trial began in 2020 and included 12 patients experiencing movement issues. It also tested the safety and effectiveness of delivering dopamine directly to the brain via a small pump. This approach was found to control movement symptoms without causing dyskinesia, a common side effect of oral treatments. Dr. David Devos, co-founder of InBrain Pharma, highlighted the potential of this less invasive method to stabilize dopamine more effectively.

Parkinson's therapy Bemdaneprocel shows benefits for up to 2 years

Data from the Phase 1 exPDite trial of bemdaneprocel, a new cell therapy by Bluerock Therapeutics, showed promising results for Parkinson's disease. The therapy, which transplants dopamine-producing cells into the brain, helped patients experience more time with controlled motor symptoms ("on" time) and reduced "off" periods when medication is less effective. High-dose patients saw a 1.8-hour increase in on time and a 1.9-hour decrease in off time. Safe and well-tolerated up to 24 months post-surgery, even after stopping immune treatment, bemdaneprocel will now move to a Phase 2 trial for further study.

Department of Defense-funded research may lead to breakthroughs for Parkinson's neuropsychiatric symptom

Around half of people with Parkinson's disease (PD) experience neuropsychiatric symptoms like memory issues, sleep disruptions, depression, anxiety, and even hallucinations. Psychology professor Christopher R. Bishop and his team, supported by a four-year, $3 million Department of Defense grant, aim to uncover the causes behind these symptoms in PD patients. Their research, in collaboration with experts at Binghamton University, the Barrow Neurological Institute, and the University of Illinois, investigates how changes in serotonin-producing neurons contribute to these issues. They found that in Parkinson's, these neurons can start producing dopamine erratically when treated with L-DOPA, leading to serious side effects. This research seeks to pinpoint effective treatments, including existing medications, that could target serotonin-related challenges in PD. Their work highlights how Parkinson's impacts not only movement but also cognition, emotions, and sleep to enhance life quality for those affected.

New Data Demonstrate Substantial Therapeutic Potential of Capsida's IV Gene Therapy for Parkinson's Disease

Capsida Biotherapeutics has reported promising results for its gene therapy CAP-003, aimed at treating Parkinson's disease with GBA mutations (PD-GBA). Delivered via a simple IV, CAP-003 boosts levels of the GCase enzyme—deficient in many with this genetic mutation—by up to 250% in the brain's key areas, which is essential for brain health. Unlike other treatments, it also avoids side effects in the liver and other sensitive organs. With no safety concerns seen in animal studies, Capsida's CEO says CAP-003 could offer a safer, one-dose approach to slowing Parkinson's progression, with human trials expected in 2025. 

New Parkinson's Drug VQ-101 Shows Promise in Early Human Trials

Vanqua Bio's experimental drug, VQ-101, shows promise as a treatment for Parkinson's disease based on early human studies. This oral medication activates an enzyme called glucocerebrosidase (GCase), which helps remove harmful protein clumps in the brain associated with the disease. In a Phase Ia trial, VQ-101 activated GCase by over 75%, exceeding expectations, and it was well tolerated by participants with no serious side effects. The drug successfully reached the brain, suggesting it could potentially slow or stop the progression of Parkinson's in future trials.

Here are my thoughts on choosing joy and gratitude when facing a currently incurable disease and how we should treat all people.

This isn’t a pity party column.

It’s a genuine way to highlight the syndrome. A progressive and degenerative one that is, in many ways, a brutal journey.

It’s also to share what I’ve learned about how to deal with tough times.

For me, the outward-facing symptoms aren’t the worst. The weird walk, effect on voice, tremors, slow movement, etc., aren’t pleasant, but they aren’t the worst things.

It’s the hidden ones. The symptoms no one sees that you wrestle with daily or periodically. From bladder and bowel issues, struggles with swallowing, fatigue, insomnia, severe apathy, and anxiety. All of these are unseen by people but are very, very real.

After an intense period of travel and relatively high demand, combined with grief and a virus, I feel done in.

My natural optimism is replaced by a deep apathy that can be so severe it’s as if you don’t exist. Totally numbing. I also get something that was previously alien to me;

Anxiety - a clinical symptom of PD due to the disruption to pathways in our brains.

You know it will pass, and this isn’t you but the disease. However, no matter how much you tell yourself this, it’s tough. Brutally tough.

I’ve learned that you can’t think or pray your way out of it. You have to make conscious choices.

Read on.

The ongoing depletion of dopamine neurons has a catastrophic effect on people with PD.

In my case, the very rare young onset variety typically comes with more dystonia (persistent cramp), depression, and dyskinesia (involuntary movements).

When I feel like this, it’s hard to smile. This is not just due to the face masking (rigid face muscles that make you look angry or moody) but also because nothing really feels good.

In fact, due to the lack of dopamine, you get very little reward hits due to the lack of the hormone that gives you them. So, even good things feel neutral.

So what do I do?

I have to make conscious choices to be joyful and to choose gratitude.

When you do this by disciplined choice, gradually, things change.

I also have to rest.

This condition doesn’t make life easy for family, work colleagues, and friends, either. I’m grateful for those who understand and give me extra grace in these times.  

I’ll never throw in the towel; that’s not my style. Sometimes, though, in order to replenish, I need to go dark.

If I go quiet or am slow to reply, now you know why. 

I’m not being rude or slack; I’m simply dealing with the fight of my life. Usually, it only takes a day or so to pull out of the nose dive.

Finally, here’s my advice to everyone, including me, when dealing with people.

Be kind. Give the benefit of the doubt. Believe the best. You don’t know what someone is going through.

One of my Cinema Therapy students, Terri Van Bibber, said those beautiful words to me after doing her fantastic presentation at the Parkinson's Association of Northern California (PANC) conference on Saturday, Sept. 28, 2024. Terri presented as Joy - literally. She took our Turning Parkinson’s Disease Inside Out class and, from that work, came up with an unexpected way to share her story. It’s important to understand that standing on a stage in front of more than 600 people dressed as an animated character was not in her realm of possibilities when she began the course. A long series of “yes, ands” led her to this place. 

Terri did a great job of making sure she surrounded herself with friends. In this case, she brought Sadness, Anxiety and Fear on stage with her. “What kind of friends are these?” you may be asking. Some of the best, if you learn how to listen and relate to them, rather than stigmatize and avoid them. 

Just as the character of Joy learns in Inside Out, Terri has learned in her Parkinson’s disease (PD) journey that refusal and denial, while human, are quick paths to theParkinson’s prison - a place where people become stuck in the words “I can’t” or “I shouldn’t”. This is isolation, an absolute killer, especially when it comes to PD. 

So what does leaning into and sharing our emotions and stories do? It gives us language where we can identify those hidden fears - the ones that have us falsely believing “it’s just me”. Having language and understanding how to present them via storytelling allows us to express ourselves and connect with others. Until there’s a cure, we have each other. And we’re better together.  

Terri took the seeds of several ideas she learned about within our community, then cultivated and co-created them into this staged reality with the help of others. I was honored to be one of her co-creators. She received an opportunity to share her story from PANC. But rather than do a “death by powerpoint recitation of the facts” (you know the ones I’m talking about), she presented her beautiful and colorful imagination and creativity. She worked with local actors to embody the emotions so many of us hide inside for everyone to see. She showed us there’s more to Parkinson’s. And just as she wouldn’t be here without me, I wouldn’t be here without her, or all of you.

To learn more about Cinema Therapy and the classes you can take part in, please click here.

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.