There are special moments…. The little things that can and do make a difference in many lives. 

Support and creating positive, memorable moments is critical but finding that special single moment that ensures no one feels alone in their battle with Parkinson’s is something achievable with the proper community support.

One story I was told was from a fantastic association in Florida, and they had a meeting where all the members signed a birthday card for one individual struggling with PD. That simple act of love and kindness changed the individual who is diagnosed life forever. Years of lots spread the halls, and knowing she was alone and had support inspired me.

Many feel you need to go big or home, but to me, the little, tiny things motivate many and change lives for the better. 

PD affects those diagnosed but also has a significant effect on care partners, caregivers, and the entire community surrounding the individual battling PD.

I challenge you to think of others and support one another because you will gain the same positive experiences and magical moments.

I remember during some of mom’s most challenging times through PD symptoms like dystonia, dyskinesia, extremely progressive weight loss, and the list continues, my other lost hope and felt she was homebound since she did not want others to see what PD had done to her. My wife and my support loved my mother and tried daily to do anything and everything to help mom smile, even for a few moments. During the most challenging times and struggles, my wife, Grether, brought manicures, pedicures, and a hair syllabus to Mom’s home; some days, mom was too sick due to PD. Still, in those small moments, something little to some may cause a world of offense to the person struggling; for that moment, PD didn’t win and didn’t stop Mom from feeling like a person again despite all that PD significantly takes from a person diagnosed. I am forever grateful for those small memories where we fought back against PD and created memories that will never be taken from us since PD takes so much from those diagnosed and their loved ones daily. 

We sometimes sit and think about how we can improve lives, and most times, that little note, card, or hug genuinely changes lives for the better…. Try it sometime and send your stories or the effects of the little things on you or your community. 

Pass the love and positive support onward because we can all make a difference and endure those diagnosed, and the community never feels alone. 

April is Parkinson’s Awareness Month, a time to reflect on the ongoing fight against Parkinson’s disease and the impressive progress we’ve made in understanding and managing this challenging condition. It’s an opportunity to highlight how much has changed in terms of Parkinson's care—both medically and technologically—and to remind ourselves that the future looks brighter than ever for those living with PD.

Breakthroughs in Parkinson’s Research: What's New?

As we look back on recent advancements in Parkinson’s care, it’s clear that the landscape has changed dramatically. Researchers and healthcare professionals are discovering new ways to slow disease progression, enhance symptom management, and improve the overall quality of life for those living with Parkinson’s. Here are my top picks of the most important recent developments that will continue to make life better for those with PD.

• Infusion-based Therapy: One of the most exciting developments is Vyalev (also known as Produodopa in Europe, Canada, and Japan), an infusion-based therapy approved by the FDA in October 2024. Vyalev provides a continuous flow of levodopa/carbidopa, enhancing "on" time and reducing unpredictable motor fluctuations. Available in the UK and EU since February 2024, it offers more consistent symptom control, reducing the highs and lows that many Parkinson’s patients struggle with. Alongside Vyalev, the FDA approved Onapgo, a subcutaneous infusion therapy for advanced Parkinson’s, offering continuous symptom control without the peaks and valleys of traditional medications. The TOLEDO Phase 3 trial has shown that Onapgo significantly improves "on" time and reduces "off" time, marking a major milestone for advanced Parkinson’s treatment.
• Adaptive DBS: Medtronic’s Smart Brain Stimulation, which received FDA approval, marks a significant leap forward in Parkinson’s treatment. Unlike traditional Deep Brain Stimulation (DBS), Adaptive DBS (aDBS) adjusts in real-time based on brain activity. This personalized approach offers better symptom management, fewer side effects, and longer battery life. The BrainSense Electrode Identifier (EI), part of the system, allows for more precise electrode placement, ensuring a more efficient treatment from the start. Backed by real-world trial data from the ADAPT-PD study, this approval marks a pivotal moment in personalized Parkinson’s care.
• Advancements in Biomarker Research: In November 2024, researchers from the University of Barcelona identified ecto-GPR37 in cerebrospinal fluid as a potential biomarker for Parkinson's progression. Higher levels of this molecule were linked to slower disease progression, offering promise for personalized treatment approaches.
• Acetyl-DL-Leucine Observations: A September 2024 study explored acetyl-DL-leucine's effects on two people with REM sleep behavior disorder (RBD), an early Parkinson's indicator. Treatment led to symptom improvement and even reversal of certain brain imaging markers after 22 months. However, cognitive decline was noted, necessitating further research to confirm these findings and understand the underlying mechanisms.
• Crexont: The approval of Crexont, a longer-acting version of levodopa/carbidopa, marks an important step in simplifying Parkinson’s treatment regimens. It requires fewer doses, offering extended symptom relief and improving quality of life. 
• Stem Cell Therapies: Meanwhile, progress in stem cell therapies, such as those by Bluerock Therapeutics and Aspen Neuroscience, is making strides in repairing or replacing damaged dopamine-producing cells, providing hope for those seeking more permanent solutions. Notably, Lund University’s treatment, which successfully implanted lab-grown brain cells in a patient, has led to significant improvements in both symptoms and lifestyle.
• AskBio’s Gene Therapy: AskBio’s investigational gene therapy AB-1005 has gained Regenerative Medicine Advanced Therapy (RMAT) designation from the FDA. Early Phase Ib studies have shown promising safety and efficacy in slowing Parkinson’s progression and improving motor function. This gene therapy, which delivers a gene that supports dopamine-producing neurons, could be a game-changer for Parkinson’s patients, especially as it moves toward accelerated approval.

Personalized Parkinson’s Care

Parkinson’s care is moving from a one-size-fits-all approach to one that is highly personalized. As Professor Bas Bloem aptly put it, “There are 10 million types of Parkinson’s because there are 10 million people with the condition.” The shift towards personalized care means that treatment is tailored to each person’s unique needs. This includes precision medicine, wearable tech for real-time symptom tracking, and customized exercise and nutrition plans. People with Parkinson’s now have more control over their health, and this means better outcomes and more hope for the future.

Exercise as Medicine

Exercise continues to be a cornerstone of Parkinson’s management. However, new research shows that not all exercise is created equal. High-intensity aerobic exercise, like boxing or strength training, has been proven to improve brain function and slow disease progression. By integrating personalized exercise plans based on an individual’s symptoms, Parkinson’s patients can experience better mobility, strength, and overall health.

Food as Medicine

Natural compounds like turmeric, green tea, and probiotics are being explored for their potential to reduce brain inflammation and protect against Parkinson’s. Diets such as gluten- and dairy-free, Mediterranean, keto, and intermittent fasting have shown benefits for managing symptoms and supporting brain health.

Wearables and Digital Health: Tracking and Improving Care

The rise of wearable tech and digital health tools has opened up new ways to monitor symptoms in real-time. Devices like smartwatches, sensors, and apps are now being used to track movement patterns, sleep quality, and symptom fluctuations. This provides valuable data for both patients and doctors, enabling data-driven decisions on medication schedules, lifestyle changes, and exercise routines, making care more precise and personalized than ever before.

Why Parkinson’s Awareness Month Matters

Parkinson’s Awareness Month is an opportunity to reflect on how far we’ve come and get excited about where we’re heading. From personalized treatments to therapies that slow disease progression, the future of Parkinson’s care is brighter than ever. However, there’s still work to be done. Awareness is about more than just educating the public about the disease—it’s about celebrating the progress made, sharing the stories of those living with Parkinson’s, and advocating for continued research and innovation.

For me, as someone who works every day with people living with Parkinson’s and their families, this month is a reminder of why we do what we do. The advances in research and treatment are incredible, and we’re just scratching the surface of what’s possible. Let’s celebrate the breakthroughs, share the successes, and keep pushing forward—together.

April is the month when some of my closest friends and I come together with a shared mission: to find a cure for Parkinson's Disease. For many of us, this cause is a year-round commitment. We tirelessly advocate for more funding for research by raising our voices to state leaders and across social media to make sure our message is heard.

It's a time we remember those we’ve lost in this fight. Still, Parkinson’s Awareness month is not only a time for reflection—it is a time for action. It is time to call on government officials and healthcare leaders. We must move the public at large to stand with those affected by Parkinson's Disease. It is time to say "enough is enough." We will not be silent, we will not be ignored. Yes, and we will not rest until a cure is found.

While the month was chosen around the birthday of James Parkinson. We know his outdated version of PD is no longer valid. The Parkinson’s Avengers lead us with Spark the Night on April 11th with a dynamic shade of blue lights glowing around the globe. It doesn't erase the harsh reality. The number of people being diagnosed keeps multiplying while the powers that be continue to turn a blind eye. It is appallingly unacceptable. Parkinson’s awareness month is about standing together and demanding a better way. 

While the efforts of advocates, researchers, and community leaders have grown, it is clear that we must push harder. We must raise our voices louder. We need to demand greater support from our leaders. The struggle for a cure, for better treatment options, and for access to care is not over. The stress Parkinson’s Disease puts on our future is staggering. The global Parkinson’s community continues to face the miserable truth that too often, the needs of those living with the disease are ignored by those in positions of power who are not listening. 

We have to make them listen. The stakes couldn't be higher. We must share our stories to save our lives and our future. Knowledge is power. The more we share our individual stories about what this disease does to us. The better the researchers will learn how to fight it. We can’t fight what we don’t understand. So we must make more people understand how much their stories matter. 

So for me. Parkinson’s Awareness month is all about growing this community. Everyone who is affected by Parkinson’s disease has a story that matters. A story that is important. From the patients to the caregivers. We all can make a difference. Yes, and we must. The future of mankind depends on it. 

This proclamation serves to honor the tireless work of advocates, scientists, and loved ones. My wish is that it reminds us all that the battle for a cure continues. Our collective action can and does make a difference. One brutally honest story at a time. 

This month we asked our Members to share the "Things I wish I knew". Whether it's a doctor, a resource, or an experience you wish you had known about sooner - your stories help others in the community. 

Here are some of the responses: 

Seriously rethink your investment strategy. There is a 10% penalty for early withdrawal of IRA/401(k) funds unless you are disabled according to the federal government, which is a difficult standard to meet. You may be disabled enough to not be able to perform your usual and customary job, but that's not the standard. Even if you are disabled according to their standards, it can be a very slow process and you will need cash to bridge the gap. Like two years worth of living expenses. I wish I had stopped putting money in tax-deferred investment vehicles earlier and switched to money market accounts or high yield savings accounts or other short-term investments that would allow me to access my own money without penalty. Related: find a financial planner who is comfortable discussing disability and "early retirement". I have found that most are not equipped to deal with the curveball of YOPD. They keep wanting to treat me like a traditional client with a normal lifespan and a normal age of/path to retirement.

I wish I could have told my future self that I would figure out how to live fully with this disease even with so many unknowns about how I was going to progress.

Nothing. I knew there would be no financial, medical, legal, or legislative support. I was right.

Postponing an official diagnosis is tempting but not helpful because you can waste valuable time when you could have been implementing helpful strategies like additional exercise, supplements, and so on.

To get my finances right. Life insurance, Retirement, 401 plans, savings accounts etc. When you don’t expect to stop working at a young age you don’t think about these things as much. I wish I would have saved more and put more money into these types of accounts for mine ands my family’s future.

I wish I would have waited a bit longer to start medications and DBS. I feel as though I rushed into things hoping for a miracle.

I would have gone straight to a Parkinson’s Center of Excellence for my diagnosis and initial treatment, instead of my local health system. I eventually made it into the Center of Excellence and both the care and caring attitude of the team has been superb.

I wish I had known about the overlap between menopause symptoms and YOPD and I wish the physical therapist treating me for frozen shoulder (common early menopause and common early PD symptom) had recognized the lingering weakness and stiffness in my arm was being caused by PD - I could have caught my diagnosis nearly a year earlier.

I wish I had prioritized my physical health more, even before my PD diagnosis. As a working mom, it was easy to justify the needs of others (family/job) before my own. Nothing like a PD diagnosis to force a reframing of priorities and committing to putting my health first to make sure I'm as healthy as possible for myself and my family!

There are so many things I wish I had known earlier. I think what would help me the most would be the assurance that I can still live a great life with this disease.

Early on, I was afraid of the answers, so I didn't ask the questions. I didn't pursue a diagnosis as vigilantly as I could have, trying to keep my head in the sand for as long as possible. I knew I was sick and getting worse as the years passed. Other health problems arose and I became completely incapacitated before I turned 40 years old. I made much of my early adult life sicker than I needed to be, going undiagnosed and unmedicated for 20 years.

During my diagnosis process, I was convinced life was over. No career, no college, no driving, no social life, no goals. I was certain I was doomed to a slow slide into a dark and meaningless existence.

What I know now is that this disease has revealed my most authentic self. I live as truthfully as I can, I speak from the heart and have no guilt over taking care of myself first. Some of what I thought was over was accurate, but what has taken their place is unpredictabily rewarding and incredible. 

Wish I had known what a movement disorders specialist was as opposed to a basic neurologist. I was given a dopamine agonist for my early tremors and had a very bad reaction. I proved to be very sensitive to medications. Finally found the right Neurologist / movement disorders specialist who prescribed an altogether different medication with very slow incremental increase that worked.

Yes, I wish I had known more about different doctors. Several we tried were not that good despite having been trained at prestigious hospitals etc.

I wish it had been possible to have a team of specialists coming together to work with my son. In Arizona for example, at the Mohammed Ali Center that is how things are done. (I know about that from webinars (ZOOM sessions) with PMDAlliance which is headquartered there. I spent a huge amount of time trying to keep my son's doctors and specialists informed. For example, when my son was hospitalized, his PCP did not even come there to see him. I found only 1 movement disorders specialist who actually saw patients in the hospital. I was able to get him to agree to take him as outpatient which worked really well until the doctor retired.

My journey to diagnosis took 14 years.  I was told by multiple neurologists to go away.  How could a young man who played basketball and soccer have a progressive neurodegenerative disease?  The doctors were baffled, but deep down I knew something was not right.  In 2022,  I had enough and finally whatever was happening to me needed care.  I took a DatScan and was told on the patient portal while I was teaching that I had Parkinson's disease.  Finally, I had an answer and thankfully medicines that worked.  I wish I knew how much a person with PD can improve with proper medical care.  I went being constantly off balance and weak to coming in 8th in a 5k race.  That's 8 out of 500 runners.  I could grab the ten foot rim while playing basketball.  I could skateboard again.  Sounds remarkable, right?  I wish I knew that when I read the message in the patient portal and the world felt like it was conspiring against me. 

I wish I had started carbidopa levodopa on day one. My main issues are tremor in my right hand, and bradykinesia and some akinesia in my right hand, and a bit in the arm.

I started CL around three weeks ago. This is after about thirteen months after my diagnosis. I waited partially because I didn't fully mentally debunk the myth that starting CL early causes dyskinesia earlier, even though they say that's officially debunked. I was also overly afraid of "immediate" side effects. I haven't had any side effects after taking the CL. I also haven't had any benefits, and I realize that finding the right medication is a process.

After that lack of response, I realized that there's no point in waiting because there's no guarantee the dose and medication you're first prescribed will work. Something will almost certainly work! Don't get me wrong. But it may take time, so you're better off starting right away.

Also, if you do end up having side effects, it's better to know that straight away, so that you and your doc can try to figure it out. The way I did it, I waited on taking CL until my bradykinesia made my typing quite hard, and my hand started going into a tremor when I do certain tasks, and I started having some more tremor frequency throughout the day (versus day one of my diagnosis).

I assumed when I started taking CL that the bradykinesia would go away, and maybe the tremors. But neither has yet, so now this is sort of "lost time" with slightly more advanced symptoms that are having a mild, yet annoying effect on my quality of life. Whereas if I'd started CL 13 months ago, I probably would have at least the bradykinesia more under control, and maybe the tremors too.

The worst part is that I did all of this knowing that not everyone has an immediate response to CL. So I even ignored the wisdom and advice of the PD community, in favour of my flimsy excuses. So definitely don't do that.

Good luck!

We would like to hear from you (and your care partner) and learn your perceptions about treatment options for Parkinson's Disease. 

For this study we will ask  you to complete a quick online survey & an online interview. STUDY LINK.

For more information about this study please email pd-study@kieloresearch.com.

April is Parkinson's Awareness Month, and we want to shine a light on the power of shared experiences within our YOPN community. This month, we’re asking: "What would you share about your experience with YOPN with others living with YOPD?"

Your journey, your insights, and your stories have the potential to help someone else feel more supported, informed, and connected. Whether it’s advice, resources, or moments of encouragement, we want to hear it all. Share here

• What aspects of YOPN have made the biggest impact on your journey? 
• Is there a resource, group, or connection through YOPN that’s been invaluable to you? 
• Have you made a connection or new friend through YOPN? 
• Have you gained knowledge or support you wish you had earlier in your diagnosis? 
• Is there a piece of advice or a perspective you’d share with someone newly diagnosed?

Your responses will help us highlight the strength of this community and provide guidance and hope to others navigating their own YOPD journey. We’ll feature your anonymous insights in blog articles, social media posts, and our monthly member update throughout Parkinson's Awareness Month.

Let’s use this month to lift each other up and spread awareness — your voice matters.  Share with this Form.

Part 2: Dealing with the Diagnosis 

Some moments in life stick with you forever, etched into your memory like they just happened yesterday. Realizing you have a chronic, progressive neurological disease is one of them. It was a quiet Sunday morning in October. My husband and I had just woken up and were reading on our iPads. In my in-box was a message with the results of the DaTscan taken 36 hours earlier. “Should I open it now?” I asked. “Sure,” came the reply next to me. The words at the bottom of the report read, “consistent with Parkinson’s disease,” and shocked what little grogginess remained in us. Tears flowed. Arms hugged. Promises were made. 

The next morning, I called the neurologist. The conversation on the other end of the line went something like this: 

I see your results here but I’m just not sure. I want you to see a Movement Disorder Specialist as soon as possible … that’s a neurologist who specializes in Parkinson’s … and, hey you’re really lucky because Georgetown Medstar is practically in your backyard and they are the best, and also, I already called in this drug for you that I want you to start taking today. It’s called Carbidopa-Levodopa, it’s the gold standard, you’ll take it three times a day, and you’ll know for sure if you have Parkinson’s in two or three days because if your symptoms improve, then you have Parkinson’s, and if they don’t improve then you don’t have it.

My head was spinning after that word salad and I asked very carefully with intentional emphasis, “I need to know: Do. You. Think. I. Have. Parkinson’s?” I’ll never forget her audible sigh followed by a defeated-sounding, “Yes.” I could feel her sadness in that sigh. She was a sleep disorder neurologist and PD was not her specialty. 

About 6 weeks later, we met with the MDS at Georgetown Medstar and he confirmed that I had Young Onset Parkinson’s Disease.

Thus began what I humorously now refer to as my 10-month long “pity party.” I’m not trying to be flippant here. It’s a terrible diagnosis and I needed this time to grieve for the future I thought my husband and I would have together. There’s no doubt that it has been altered greatly. But it’s not a place to linger long. You need to get to the other side of it. 

From the get-go, he and I would tell each other, “At least it’s not a brain tumor, or MS, or ALS, or (fill in the blank with your terrible disease of choice).” I tried to stay strong and keep a brave face, but let me tell you, it was a really dark time. I found myself in tears often, especially when I had the house to myself.

Early on, I remember many hushed FaceTime conversations with some of my close friends conducted in our bedroom closet. It was the only place in the house where I knew I couldn’t be overheard by our kids.

Telling our twin daughters went better than expected, probably because my husband didn’t give me time to fret about it (he knows me so well!). We were all together one day and he looked at me and said, “We might as well tell them now,” giving me no choice but to tell them. They were just 22 years old, but they handled it with compassion and maturity. 

Here’s where I hit my turning point and how I left the pity party behind. I had a checkup with my MDS, and I told him I was really worried. He said, “Oh, about Covid?” (we were still in the pandemic at the time). “No!” I replied, “Parkinson’s!” He basically brushed me off and said something like, “Everybody has something. Just take it one day at a time.” To say I felt like my emotions were being dismissed is an understatement. 

After my appointment, I met up with Anna Grill, the founder of YOPN. She had graciously invited me to meet her for lunch at a nearby restaurant. She was the first person I’d ever met with YOPD and she was so sweet and kind. We shared our PD stories and I remember asking her a ton of questions. At some point during lunch, I told her about my frustrating conversation with my MDS earlier that morning. I just knew she would be as indignant as I was. Her two-word reply shocked me to my core. “He’s right,” she said quietly. She advised me to leave my pity party behind and start living. Boy, was that a message I desperately needed to hear from someone who actually had the same diagnosis. She was right. 

I always knew that I had so much going for me, but it was time to truly appreciate it! I have a loving family, strong faith, wonderful friends, and good health insurance. I am going to be fine. Even when I’m not fine (and there are days when I am far from it), I will be fine.

My favorite song lyrics from The Barenaked Ladies tune, “Lovers in a Dangerous Time,” is now my motto: “Nothing worth having comes without some kind of fight. Gotta kick at the darkness 'til it bleeds daylight.”

Kick at the darkness, my friends. Never stop kicking at it.

Author’s Note: If you are having thoughts of suicide or self-harm, please reach out for help today. Whether it's a trusted friend, family member, or a mental health professional, don't hesitate to lean on someone for support. You can also contact a suicide prevention hotline—they're there to help you through this. In the US, you can dial 988 anytime to speak with someone. You are not alone, and you are loved. 

Part 1: The Road to Diagnosis (published in July 2024 issue of The YOPN Times)

My Parkinson’s journey started, as it often does, with a curiously twitchy finger. My immediate reaction, however, is embarrassing to admit: I held my right hand up to my husband and said quite glibly, “Look, Honey, I’ve got Parkinson’s!”

Seriously, I said that! I both cringe and chuckle when I think back on that moment. Karma is, as they say, a … well, we all know what they say about Karma!

Of course, I didn’t think I had Parkinson’s. That would be crazy! I was a healthy 47-year-old, the vice president of a small publishing firm, happily married with twin girls about to start college. Life was busy and exciting! Parkinson’s doesn’t happen to women my age – the twitchy finger was clearly stress-related.

Over the next few years, many seemingly unrelated issues started happening to my body, and I had an excuse for just about all of them: slowing down (well, I’m not getting any younger), stiffness in my right arm and shoulder (it’s all this computer work), tiny handwriting (it’s because I don’t write very often. It’s a lost art, you know.), insomnia and GI issues (happens to everyone!). The list goes on.

But there were other issues that I couldn’t ignore. The worst was that the toes on my right foot would curl painfully when I walked. I tried everything: multiple trips to my Orthopedic doctor who was completely stumped, stretching, and many rounds of physical therapy, but nothing gave me relief. Of course, I would much later learn that this is called Dystonia and is very common in Young Onset PD.

When I kept making typos at work, I went to my primary care doctor and complained that my right hand felt like it couldn’t keep up with my left, resulting in constant frustrating typos. It was so bad that I started using voice-to-text assistive technology to compose emails. I remember holding up my hands to my doctor and wiggling my fingers fast on my left hand and then showing him the same movement on my right hand, which was at about half the speed and much less graceful. He thought I had a pinched nerve and wrote down the name of a neurologist. Unfortunately, I never mentioned to him the occasional slight tremor or the toe cramps because I didn’t realize they were related. Lesson learned there!

And did I visit that neurologist? Of course not! I figured if it was a pinched nerve it would work itself out eventually and I didn’t want to open another medical “can of worms” when I was dealing with the toe cramps.

But then came the day I’ll never forget, a gorgeous sunny September day in 2020. My husband was sitting on our front porch when I came outside to put a letter in the mailbox at the end of our driveway. As I walked back up the front porch, he was looking at me strangely and said, “Your right arm isn’t swinging when you walk. Your left arm is swinging normally but your right one is just hanging there like it’s dead. What's going on?”

I told him I had no idea what he was talking about, laughed a little bit, and went back inside to work.

Five minutes later, my husband walked into my office, iPad in hand, and said in a serious but soft tone, “I hate to say this but I think you have Parkinson’s. You need to see a neurologist.” I’ll admit, I was more annoyed than concerned. “Oh come on! Are we really doing this?” I asked him. But as I looked at the list of symptoms on his iPad, my face dropped as I realized that I had so many of them.

The next morning I called the same neurologist that my GP recommended I see a few years earlier. She ordered testing including a DaTscan. A few days later, on a Sunday morning, I opened an email from the imaging center with the results of my scan that they had conducted 36 hours prior. Most of it was undecipherable without proper training except the last part that said, “consistent with Parkinson’s disease.”

Our world was rocked.

When my husband was diagnosed with Parkinson’s five years ago, we felt lost. There was so much we didn’t know, and the advice we received from doctors was minimal. We mostly heard about medications and basic symptom management. Over time, though, we realized that managing Parkinson’s requires a more holistic, tailored approach, something we wish we had understood from the start. Here's what I wish we’d known when we first began this journey.

Exercise is Crucial — Start Early

If there’s one thing I would emphasize most, it’s the importance of physical exercise. Early on, we didn’t fully grasp how essential exercise is in managing Parkinson’s. We thought focusing solely on medication would be enough, but regular physical activity has proven to be one of the most effective ways to manage symptoms and improve quality of life.

My husband now follows a daily routine that includes stretching, strength exercises, and walking. These exercises help reduce rigidity, improve balance, and lift his mood. We didn’t start incorporating these exercises until later, but I now know how beneficial it would have been if we had made exercise a priority from day one. 

Better Medication Management and Diet Go Hand-in-Hand

When my husband was first diagnosed, we focused on taking his prescribed medications but didn’t pay enough attention to how his diet could impact their effectiveness. We later learned that protein can interfere with the absorption of Parkinson’s medications, something we hadn’t been told by the doctor. We’ve since developed a meal plan that avoids protein during medication windows, focusing on lighter, easily digestible meals at those times (mainly vegan). This adjustment has made a noticeable difference in how well his medication works. Beyond that, we also started focusing on a nutrient-rich diet to support his overall health, ensuring he gets plenty of antioxidants and anti-inflammatory foods like leafy greens, berries, and fish and avoids dairy, gluten, ultra-processed food, red meat and alcohol. Regular blood tests have helped us identify any deficiencies that could impact his Parkinson’s symptoms, and we’ve adjusted his diet accordingly.

Holistic Approaches to Treatment Matter

We also wish we had explored alternative therapies earlier. Over time, we’ve learned that Parkinson’s treatment isn’t just about medication — it’s about supporting the body and mind in all ways. Practices like acupuncture, qigong, and autogenics have helped manage symptoms like stress and rigidity. We also explored supplements, but it’s important to approach these cautiously, working with professionals to ensure they don’t interfere with conventional treatments.

Mental Health is Just as Important

Parkinson’s is not just a physical disease; its emotional and mental toll can be just as significant. For my husband, the loss of his mother at a young age created a lot of unresolved grief and emotional trauma, which contributed to stress and worsened his symptoms. I wish we had recognized earlier that mental health plays a critical role in Parkinson’s management.

We’ve since incorporated meditation and mindfulness practices into his daily routine to help manage stress and improve emotional well-being. Therapy has also played a role in addressing past trauma, and it’s become clear that managing mental health is just as essential as managing physical symptoms.

Work with a Team — Not Just One Doctor

When my husband was first diagnosed, we primarily relied on our neurologist to guide us through treatment. While they are a key part of the care team, we’ve since learned how important it is to work with a broader range of specialists. A naturopath has helped explore natural remedies that complement medical treatments, and a dietitian has been invaluable in creating a nutrition plan tailored to his needs.

Routine is Vital

Along with exercise, having a set daily routine has been crucial in managing Parkinson’s. Parkinson’s can make it difficult to maintain structure, but we found that consistency in daily activities helped improve both physical and mental health. My husband’s routine includes time for exercise, medication, rest, and meals — all planned to help manage symptoms and keep him on track.

Get Rid of Chemicals in Your Life

We didn’t realize how much environmental factors could play a role in Parkinson’s. Over time, we’ve been eliminating harmful chemicals from our homes and daily routines. This includes switching to natural cleaning products, eliminating unnecessary plastics, and reducing exposure to chemicals in food and skincare. While it’s impossible to avoid everything, we’ve found that creating a cleaner environment has helped my husband feel better.

The Power of Social Support and Connection

The emotional toll of Parkinson’s disease is real, and it’s something we didn’t fully appreciate in the beginning. It’s easy to get caught up in the medical side of things and forget how isolating it can be. We didn’t know the importance of surrounding ourselves with a support network of family, friends, and fellow Parkinson’s warriors who truly understand the journey.

I’ve learned that the connections we’ve made — especially through support groups and online communities — have been invaluable. They’ve helped us learn new tips, share our experiences, and remind us that we’re not alone. This connection also brings hope and inspiration when things get tough. If I could go back, I would tell myself not to wait so long to seek out these support networks. There’s a whole community out there that can make the road easier to walk.

If I could go back and give myself advice when my husband was first diagnosed with Parkinson’s, I’d tell myself to take a more holistic, personalized approach. The conventional path is important, but it’s not enough on its own. Combining exercise, a tailored diet, medication management, alternative therapies, and mental health care has made a world of difference in how we manage Parkinson’s today. Parkinson’s is not just a physical disease; it requires addressing the person as a whole. By taking this approach, we’ve learned to live a better quality of life despite the challenges.

Parkinson’s management is an ongoing learning process. The key is to never stop researching, experimenting (safely), and building the right support system. We still don’t have all the answers, but we’ve learned that Parkinson’s is a journey best taken one step at a time, with the right tools and mindset.

What I wish I would have known before I was diagnosed...

First, I wish I would have known sooner. I wish someone could have explained what was happening to my body and my mind. Some clear clues to shed light on the unexplainable. A link to make my words and odd reactions make sense. I wish I would have understood a lot of things. I wish…

I wish the world was a different place. I wish I didn’t have this ailment that affects my face. 

The loss of face. The four words that start the term most professionals use for a loss of facial expression or facial masking. 

Yet the ‘loss of face’ is also seen in some cultures as a falling from grace. Signaling shame. It’s interesting how the same words can have different meanings depending on who is using them. I wish I’d known how different kinds of trauma affects a person as a whole. Not just people with PD. EVERYBODY! I wish…

Parkinson's disease is the fastest growing neurological disease on the planet. The reasons feeding into that hard to swallow fact are endless. This is no joke. I also wish I had known the facts about toxic chemical exposure. Like many of us I spent years failing to hide my symptoms. Or cover them in blanket terms like ‘I’m just a clutz’ or ‘two left feet’. Dangerous tales that included jokes that go back to my childhood. My dad often said I tripped over cracks in the sidewalk. In a place where the ground moves as much as California. In truth, I often did. 

Early childhood balance issues. Repeated adolescent head trauma. Young adult lymes disease. Persistent social isolation as an adult. I wish I had known how all of these things contributed to years of undiagnosed confusion. I wish…

Yes, and I wish I would have known much MUCH earlier how a diet, specifically a gluten free diet, and exercise could ultimately set me free. Not from PD. Because we haven’t yet found the secret combination to do that. Finding the right diet is how PD helped me find a road towards a healthier me. Still. I wish…

I wish the cure was here today. Or perhaps yesterday. Those long years so many of us had no choice but dismay. Crying to doctors, family and peers asking. ‘Please isn’t there another way? 

Hope is on the horizon. Ending Parkinson’s disease 2 is on its way. With it more action to take. I hope it will inspire more to stand up and say. We the people with PD demand to have our say. 

I wish I knew so much sooner that it was true. Yes, and I share my stories to help find a cure that is new. In that book there is a lot of truth to be told. Our stories are important. To make change we must stand up and be bold.