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.

No one could say it wasn't a beautiful day. I retraced the path I traveled so many times as a child, crossing the bridge with an uncertain knowledge of where I was. The left leg challenged my steps. It was getting close to pill time, and I knew the Cochranes, both father and son, were waiting inside.

When I reached the all-too-familiar gate, it felt like home. I waded my way through the crowds with the flow of traffic, knowing my target would be just to the right—Section 126, the very same section where my family held season tickets so many years ago….

Back in the 1980s, when the A's were in their prime, many of the parents and grandparents of young A's fans were teenagers. Robert Cochrane and I were two of them, making this the perfect time and event to meet face-to-face.

We made it. I was so excited I didn't know what to say or do. The emotions all around us were waves of everything from tears to frustration. Yet overall there was a sense of community I wasn't prepared for. It's been over 30 years since my parents and I held those season tickets. Sitting there with the superstars was overwhelming in all the best ways. Anxiety didn't tag along for this long-awaited ride. I wasn't symptom-free by any means, but I was too happy to live in the moment to care.

The day went by too fast. It was so great to hang out with Dan while Robert navigated the crowds to bring his dad the last meal they would share in the Coliseum. It gave me the chance to thank him. He was confused at first, and I had a hard time hearing him. He asked, "What for?"

I told him thank you for everything. For everything he's done. For his willingness to go out to the ballgame one last time. And above all. I thanked him for those two wonderful kids he made. Because without them. For now, Christine's music has also become a lifeline in times of family stress. I wouldn't have also made it to that very historic game.

I'm unsure what he thought of it, but I believe he understood. I wanted to tell him that for a long time. I'm so glad the stars lined up in just the right order—Destiny's call was met. 

As for the tiny little Sherpa guy on the screen, who was larger than life, folks, after playing Mirror for a year, I was mistaken for his sister a couple of times. Ok. I can live with that. Wonder Twins activate!

Add in the energy of a sold-out stadium full of people who all had one common goal. Let it be known that we are not pleased with the rally cry: "Sell the team! Sell the team! SELL THE TEAM!"

We were sad to see the day end. It was hard for everyone to exit the coliseum for the last time. Wonder twins did indeed activate because soon afterward, Robert came up with a plan. A grand plan to keep the A's in Oakland while at the same time finding Las Vegas a team of their own. You can read more about that here: www.yesandexercise.org. Under the blog section. The title is Oakland and Las Vegas: Come Together. If you believe the Athletics should stay in Oakland there is a link to a petition at the end of the blog. Also check out the Boys of Summer documentary series and see how Parkinson's awareness and MJB started it all. Please join us in our fight to continue our legacy. Not just for our families but for all the other families who love their green and gold. I'm holding on to hope that the last game can also lead to new beginnings. Dare to Dream.

 

Karen Patterson, diagnosed with Young-Onset Parkinsonism in December 2016, embodies The Voice of Mother Nature. As a poet advocating holistic healing, she fights for a cleaner Earth. Her approach includes life-saving tea, shaping stories one cup at a time.

When I heard about Joseph's announcement that he had been "un-diagnosed" with Parkinson's, I was shocked. Until I wasn't. You see, my background is in healthcare risk management and compliance, where mistakes occur in hospitals. Every complaint, error, and variance ends up on the desk of someone like me. No diagnostic test is perfect or without error. I could bore you by explaining sensitivity vs. specificity, but we all became experts during the pandemic. Ever take a test when your entire family is sick, and one of you tests negative while all the rest test positive? There you go.

Joseph's story is more than a tale of diagnostic error, although that is important too. Research has shown that perhaps a quarter of people with Parkinson's are misdiagnosed in the first year. The Dopamine Transporter Scan, or DaT, is often touted as the test for Parkinson's, but it is simply another tool in the toolbox; it is not perfect. As we move toward the era of biomarker tests—blood, spinal fluid, etc.—it is essential to remember that all tests can and do fail some percentage of the time. But this is not just a tale of diagnostic error. It's a case study of an experience that so many of us share: doctors who simply don't listen to us, who dismiss our feelings and insights into our conditions, making us doubt our own bodies. How one doctor's opinion influences the next and the consequences that follow can be devastating, yet it's often treated as just a statistical anomaly.

Joseph's story is also a cautionary tale about another often glossed-over issue that can leave a trail of destruction in its wake: dopamine agonists and impulse control issues. Long the stuff of whispers and shame, these experiences are now increasingly being shared by brave individuals like Joseph Schweinzer. A velvety-voiced 47-year-old family man and long-time member of the YOPN community, Joseph was diagnosed in 2020 amidst the global pandemic. He had no history of the issues some of us are warned about—gambling, sex, or shopping. No way. Never. But the dopamine receptors said otherwise, as did his credit card bills.

You can hear the rest of Joseph's story on our upcoming podcast.

This month's YOPN Living Well Starts podcast marks a new direction, perhaps even the beginning of something quite unique. It's real talk about the things that no one else is discussing. I hope you will listen and let us know what you think. Feedback is always appreciated. And you know what we say: "Once young onset, always young onset." You are always a part of this community, Joseph. The YOPN podcast is available for free on the YOPN website, Spotify, and Apple.

 

Esther Labib-Kiyarash, MSHA, CPHQ, a former hospital Quality Director turned Parkinson’s Ambassador, resides in West Texas with her husband, a Hospital Pharmacy Director, and their two children. With 20 years of marriage, she passionately advocates for Parkinson's awareness.

Living with Parkinson's Disease for the past 17 years has certainly shaped my life in an interesting way. I've been fortunate enough to reflect and discover some guiding principles that help me stay positive, find happiness, and lead a fulfilled life. Here are my ‘rules to live by’:

1. Life is a Marathon, Not a Sprint

I’ve embraced the art of being "patiently persistent"—moving forward even when progress seems small. This mindset keeps me grounded and reminds me that this is where my wins and lasting success come from.

2. Enjoy and Embrace the Journey

I feel gratitude for every small victory, every peaceful moment, and every smile along the way. I’m especially thankful for the incredible people I’ve met who have supported and inspired me. Parkinson’s has brought unexpected gifts in these meaningful connections and moments.

3. Stop and Smell the Roses

I make it a priority to slow down and appreciate the beauty around me. During one of my daily bike rides, I stopped and took in the fresh air, the cool breeze, the birds chirping in the trees, and the feeling of my heartbeat as I came to a rest. These moments keep me grounded and grateful.

4. Consistency over Speed

Living with Parkinson's requires adaptability and a shift in mindset. I know I can’t move as quickly and nimbly as I used to, and that’s okay. I remind myself that consistency, not speed, is what matters. It’s a ‘Use It or Lose It’ approach—staying active and persistent ensures that what I set out to accomplish will get done, even if it’s on my own timeline.

5. Create Your Happiness and Well-being
While the love and support of others are invaluable, I believe that true happiness originates from within. I focus on cultivating my own inner peace and contentment, even in the face of the challenges that Parkinson's brings.

6. You've Got to Lose to Know How to Win

Every loss or setback has been an opportunity for growth. Parkinson's has taken many things away from me, but on the flip side, it’s also given me new perspectives and a mindset for focusing on the positive in every situation that comes my way.

7. Do Unto Others as You Would Have Them Do Unto You

I try my best to treat everyone with the kindness I would want in return, recognizing that we all have our struggles, even if they aren’t visible.

8. Don’t Think About the Past or Worry About the Future—Live in the Present

Whether we like it or not, the past is unchangeable, so I make sure to focus on what’s happening today.

9. All You Need is Love

At the end of the day, it’s love that keeps me moving forward—love for myself and for others. It’s this love that reminds me I have the support and care to take on any hurdle that comes my way.

10. Harness the Power of Faith
Faith is the foundation of everything I do. For me, starting and ending each day with God at the center brings a deep sense of peace and strength, reminding me that I’m never alone on this journey. But faith doesn’t have to be tied to religion—it can simply mean trusting in something greater than yourself. It’s the belief that no matter how difficult the road ahead may seem, there’s always hope and purpose.

These guiding principles are not just for navigating life with Parkinson’s, but for life as a whole. They help me find balance, stay hopeful, and approach each day with gratitude.

Living my Best Life!

I just finished a video call that I’ve been both anxious and excited about all week. Now that it’s over, my heart rate has slowed down, thankfully. The call was with a representative from the Michael J. Fox Foundation (MJFF), a staffer from Senator Van Hollen’s office who works on health legislation, and two other women who also have Parkinson’s. Our goal was to encourage the senator to increase funding for Parkinson’s research. I had three minutes to tell my story. My voice broke a few times with emotion as I recounted the shock of diagnosis and what it is like to manage symptoms every day. I saw genuine concern and empathy in the staffer’s eyes, which felt like a good sign that my message was getting through. We need more funding and support from Congress.

This was the third such call that I’ve participated in with the MJFF. The first was last year when we spoke with staffers from Congressman Sarbanes’ office encouraging him to co-sponsor the National Plan to End Parkinson’s Act, which passed unanimously in both houses and was signed into law by President Biden on July 2, 2024. The second call took place two weeks ago, also with Sarbanes’ office, but this time to ask for additional funding for research.

It’s been such an honor to participate in these calls and the experience has been incredibly empowering. It feels like I’m part of something bigger and that I’m making a difference—even if it sounds a bit cliché. The MJFF representatives I’ve worked with have been both warm and supportive. I’m eager to find more opportunities like this and feel like I’ve finally discovered my true calling – advocacy work!

Writing these articles for The YOPN Times has had the same effect. It’s been so therapeutic for me to share my story, so thank you for reading this!

I’ve been an editor and publisher my entire career and continue to work full time. I’m not sure when I’ll scale back, but I could see that happening in the next few years.

In the meantime, I stay very active. My husband and I bought a used tandem bicycle that we’ve dubbed “Frankenbike” due to all the mismatched components we’ve installed, and we love taking it out on different trails. I ride in the back, focusing on pedaling and spotting wildlife (still hoping for a bear sighting!). We also love kayaking on local lakes and rivers, where we often see ospreys, bald eagles, and other birds. I attend classes at the gym 3-5 times a week and just participated in my first Rock Steady Boxing class (love it!).

On my “to-do" list is to participate in a Parkinson’s walk next year to raise funds for the cause. Our incredibly talented daughter, an artist, is already designing our team shirts -- squirrels riding a tandem bike with the one in the back (me!) holding a martini in one hand and a shaker in the other. Our team name will be “Shaken, Not Stirred,” and I can’t wait for it!

Lastly, I’ve been more open lately with friends regarding my diagnosis. As many of us have discovered, it’s difficult news to share. There’s an unfortunate stigma with this disease that I don’t quite understand, yet I feel it in my bones. Seeing recent news reports speculating that the president might have Parkinson’s just adds to that feeling. It was made to sound so scandalous, like if you have Parkinson’s then you are useless and inept.

But that attitude can take a hike! I’m not letting Parkinson’s slow me down (well, I am slower but you know what I mean). I’m going to fight it every step of the way with my family and friends by my side. In other words, I’m committed to “Living Well” as our YOPN slogan suggests. I hope you are too, my friends, and I wish you all the very best!

Jenny Newman was diagnosed with YOPD in 2020. She works full-time as a publisher and webinar producer. She and her husband Ernie love to travel and are taking their 11th cruise this fall. Jen stays active with biking, kayaking, yoga, pilates, and spin classes.

Dear Mel,

What do you think it means to be in love? I'm sure it's different for each person, but I am curious to know what that means to you.

Your friend,

Eros

Dear Eros,

My expectation of love and what I need from it has changed as I have aged and learned many lessons about love and relationships that I didn't realize were out there when I was younger.

I admit I wanted that fairy tale experience—to be swept off my feet by an attractive and charming partner who would make it their mission to ensure that I felt complete, loved, and happy.

It seems so simple, yet now, at this stage of my life, I realize how unreasonable and unrealistic my expectations were.

In my opinion, love isn't something we can orchestrate or even achieve on our own. It requires mutual attraction, sure—stimulating those neurochemicals we were all born with that lead to that feeling in the beginning, that new relationship energy that feels like love but isn't.

I believe that love is intentional. Love takes effort. It's not just something you find; it's something you work to build and maintain. Love takes patience, kindness, and faith—it has to because love is not one-sided. To love, we must also be willing to learn to communicate because no two people give or receive love the same, so we must know the differences to work towards and around them.

Love is a partnership that always takes some fixing but can produce the sweetest and most magical moments of joy life can offer.

The fairytale lies in the effort.

Love is life, and life is love.

XOXO 

-Mel

 

Melissa Livingston, a true New Yorker now residing in Texas, passionately advocates for the Parkinson's community. Following her diagnosis in 2020, her Instagram journey with #parkinsonslookslikeme gained widespread attention, uniting millions

Affectionately known as Mel, she actively engages with her audience across multiple platforms, including Instagram (@missmliv), Facebook (Melissa Marie Livingston), and TikTok (@UndeniablyHoneybee).

Ultrasound and light therapies to investigate targeted treatments

A groundbreaking study by scientists at Nottingham Trent University will explore the use of ultrasound and light therapies to investigate targeted treatments for Alzheimer’s disease, dementia, and Parkinson’s disease. This first-of-its-kind research aims to determine whether treatment can be delivered to the brain using specialized microbubbles. The team hopes to revolutionize how these neurodegenerative diseases are treated by harnessing non-invasive techniques to bypass the body’s natural barriers. 

Levodopa taken at bedtime help with quality sleep

Taking levodopa before bedtime may reduce the frequency and duration of nighttime awakenings in people with Parkinson’s disease, though these improvements might not be noticeable to the patients themselves.

This conclusion comes from a small study involving patients in the early to middle stages of the disease, in which an actigraphy device was used to monitor their sleep-wake cycles. The researchers emphasized the importance of using objective tools to measure sleep quality, particularly when assessing the effects of medications.

Implants reduce symptoms by reading brain activity

A new development in computer interface technology offers hope for Parkinson's patients through what could be considered a "smart pacemaker" for the brain. Deep brain implants that adaptively adjust electrical stimulation based on an individual's neural activity have shown significant promise in enhancing therapy for Parkinson's disease.

Up to 56% of l-dopa fails to reach the brain

The effectiveness of L-dopa, a common medication for Parkinson's disease, varies greatly between patients due to differences in their gut bacteria. Normally, L-dopa needs to reach the brain to be converted into dopamine, which helps manage Parkinson's symptoms. However, certain gut bacteria can break down L-dopa before it gets to the brain, making the treatment less effective. 

Researchers are testing FDA-approved compounds that target dynamin-related protein 1 (Drp1), which regulates mitochondrial division, as potential treatments for Parkinson’s disease

Recent studies have linked disruptions in mitochondrial processes to neurodegenerative diseases, including Parkinson’s. Toxic proteins and environmental neurotoxins can interfere with the balance of mitochondrial fusion and division, leading to impaired cellular function and the buildup of harmful protein aggregates—a hallmark of Parkinson’s disease.

1st patient dosed in Phase 2 trial of VTX3232 therapy

VTX3232 works by reducing brain inflammation through the inhibition of the NLRP3 protein, a key factor in Parkinson’s progression. This trial will assess the drug’s safety, tolerability, and impact on disease biomarkers, with results expected in 2025.

CREXONT Now Available Nationwide in U.S. Pharmacies

Amneal Pharmaceuticals has officially launched CREXONT (carbidopa and levodopa) extended-release capsules, now available in pharmacies across the U.S. CREXONT offers a novel approach to treating Parkinson’s disease through an oral formulation that combines immediate-release granules with extended-release pellets, designed to provide a longer duration of symptom control with fewer doses throughout the day.

How a simple worm may hold the key to stopping Parkinson’s

Scientists have discovered a link between how the body manages copper and neurodegenerative diseases like Parkinson’s and Alzheimer’s. Using a gene called swip-10 in roundworms, their research suggests that restoring copper balance could lead to new treatments for these disorders.

In their study, published in the Proceedings of the National Academy of Sciences, the team found that the worm gene swip-10 helps control copper levels. Copper, a vital nutrient, is crucial for brain health as it supports energy production and protects cells from damage. A lack of proper copper regulation in brain cells can lead to the death of neurons, which is seen in diseases like Parkinson’s and Alzheimer’s.

Further research revealed that mutations in swip-10 cause neurons in the worms to deteriorate early, similar to what happens in Parkinson’s disease. The scientists also found that a related gene in humans, called MBLAC1, is linked to certain forms of Alzheimer’s. Mutations in this gene disrupt copper balance, leading to poor brain and heart health.

By supplementing copper in the diet or using a drug that boosts copper levels, the researchers were able to restore cell function and prevent neuron death in the worms. This suggests that regulating copper could be key to treating neurodegenerative diseases.

Beatrice Zatorska is the founder of PD Buddy, a self-care app inspired by science aimed at slowing down Parkinson's progression and improving quality of life. Her motivation to create an app for people with Parkinson's stems from her husband's diagnosis in 2020. She is a passionate science communicator and technologist.

Let me introduce you to the world of medication faff (UK slang for hassle) in England. 

Recently, following a visit to my new MDS—a geriatrician by trade who sees some with Young Onset dudes (not many, as there are only around 15k of us here)—he decided to move me from Sinemet to Stalevo to try and reduce my off time. For those not in the know, Stalevo contains entacapone, a COMT inhibitor that is intended to stretch the effectiveness of the L-dopa out.

So far, so good. I was excited to try it. 

The first glimpse of trouble was the lack of availability. 

I'm on a relatively high dose med of 200/50/200. I was previously on 200/50mg Sinemet, but it was felt that with the addition of entacapone, we could reduce the Sinemet slightly.

The hospital pharmacist did a great deal of head-scratching and then sent me away, muttering that he could "rustle something up in a few days." Sure enough, the call came, and I trundled off to the hospital to get my meds. It wasn't Stalevo but Stanek, which is a generic brand. Okay, that's okay as long as we stick to that. However, when it came to putting my next order in (we get 28 days at a time), I was given something called Sastravi.  Yet another generic brand. Not only that, it took over ten days to get the meds due to the shortage of medication in the UK. Then I went back to Stanek, and now it looks like I may be bounced over to the preferred brand of Stalevo.

Therein lies the problem. Whilst it's said that the meds are all the same, those of us with YOPD know that the brands are blended differently and can cause trouble with absorption or efficacy.   Every brand change has brought with it less on time (which defeats the aim of the change) or has slightly different rates of impact and even side effects. 

Some of this is undoubtedly due to the UK's exit from the EU, and I'm sure this will smooth out in time. Some of this, however, is simply the profit margin made by the pharmacy on different brands. Stalevo is too pricey, so they go for the meds that make the most cash, not the ones that will help us the most.

Interestingly, when I read my notes from the consultation, my MDS noted that any generic brand of Stalevo would do. It won't. This highlighted to me the lack of awareness around these details, even amongst the trained and seasoned professionals out there. 

In summary, this is an issue that we need to raise awareness of amongst the YOPD community (especially the newly dx) and clinicians. 

As for the impact of the COMT inhibitor, I have to say that overall, so far, it's been a good move. However, I've learned once again that in the wild ride of YOPD, you need to be your biggest advocate. 

We know our bodies better than anyone - so let's keep beating the drum for what we need, using the knowledge we gain, and raise awareness wherever we can. 

Onwards!

Carl Beech (Beechy to his friends but not his Mum). Is married with two adult daughters, a dog, a cat, and a tortoise. He is a volunteer CEO  of Spotlight YOPD, a UK nonprofit. Additionally he is CEO of a Community Transformation Charity Center for his day job.