YOPN Treasurer Mark Kohus wanted to prove that it's possible to live actively and well with YOPD — so he climbed Africa's tallest mountain.

Back in 2018, 46-year-old Mark Kohus found out he had Young Onset Parkinson’s. Like many others, he didn’t know anyone else who shared his experience and wasn’t sure what to do next. He got involved in boxing classes for people with Parkinson’s but felt out of place in a sea of senior citizens. 

As Mark continued searching for ways to stay active, he found that resources for the Young Onset Parkinson’s subset were few and far between. He didn’t want his life to be like that of the older people he saw, so he persisted in his quest for an active, PD-friendly lifestyle. Then he met YOPN Founder Anna Grill, and everything changed. 

“We met at a Davis Phinney Foundation event, and her organization sounded like the perfect fit,” he recalls. “I ended up joining the board a little over a year ago, and it’s been great. We’re reaching people who want to be active and not sit and wait for PD to take everything from them. It’s exhilarating and exciting to discover there are a ton of people out there that are experiencing the same thing.”

Soon after joining the board, Mark started getting emails about an opportunity to climb Mt. Kilimanjaro with a team organized by the Michael J. Fox Foundation. Despite his advocacy for staying fit and active with Parkinson’s, he dismissed the messages. Who would be crazy enough to do that with PD?

And so the emails kept coming. And Mark kept ignoring them…until one day he didn’t. “Why not?” he thought to himself. 

“The application process was simple,” he recalls. “There weren’t any strict requirements, and the only question was basically ‘Are you willing to do this?’”

“Then I texted my wife to tell her I’d applied. I expected her to ask more questions, but she was immediately super excited and all for it. She’s usually very cautious, so it was motivating for her to react like that, which gave me the validation I needed to really go for it.”

Preparing to Climb

After Mark’s application was accepted in December 2022, he had until August of 2023 to prepare for the climb. Little by little, he began adding more hiking, cardio, and strength training to his workout routine. 3-mile hikes eventually grew into 11-mile hikes with a weighted backpack. Throughout the training, he and the other accepted applicants met over Zoom to get to know each other and exchange training tips.

“About six weeks before, I went to Colorado to get a sense of how my body would react to the altitude,” Mark explained. “Since I live pretty much at sea level down here in Kentucky, I wanted to try hiking in an environment more similar to the actual climb.” 

His body handled the altitude change well, which further boosted his confidence about taking on Kilimanjaro. Then, before he knew it, Mark found himself gazing down at its peak as his flight approached the  Kilimanjaro airport.

The Real Journey Begins

“I could see the top of the mountain from the clouds above and just thought, ‘Wow, I’m gonna be on top of that mountain,’” he remembers. “It was both intimidating and inspiring — it really hit me emotionally at that point.”

When all 9 climbers finally met in person, Mark described feeling an “instant connection” between the group since Parkinson’s Disease had touched each of their lives in one way or another. Five were either care partners or family members climbing to honor their loved ones, three (including Mark) were diagnosed with YOPD, and one was a 67-year-old woman who had been diagnosed with standard PD. 

“She was a constant inspiration for everyone,” he said. “She was always ready to go and always out in front of the group with the guides. We kept reminding ourselves that if she can do it, we can do it.”

And so the group set off on what would be a 7-day trek: Five and a half days to make it to the summit, and one and a half to get back down. 

“The sense of camaraderie we developed was incredible,” Mark said. “Since we were all connected to PD in some way, everyone understood what the other participants were going through, and was patient and understanding when someone needed to take a break. We all helped each other out and recognized when meds needed to be re-upped and everything.” 

“There were no built-in, special accommodations for those of us hiking with Parkinson’s — we just treated each other normally and followed the standard precautions just like any other climber would.”

The Challenges Along The Way

The third day presented the toughest challenge for Mark. After climbing from 12,000 to 15,000 then back down to 13,000 feet, the altitude sickness hit. 

“We went to 15 [-thousand feet] to get a feel for the altitude we’d experience the next day, but went back down so we could rest and sleep at a lower altitude,” he explained. “I had a constant, low-grade headache and not much of an appetite, but I remembered what I’d read about altitude sickness before and how it was important to eat.” 

Despite his exhaustion, Mark was able to have some food that night and was relieved to wake up feeling refreshed and energized for the day ahead.

“It also helped talking to the other folks about it the next day and hearing they were experiencing the same thing — it had been a hard day for everyone, but after talking about it we knew we were going to pull through it together.”

The Summit

Finally, day 5 had arrived. After all of their hard work, the self-dubbed “Kili-9” set out to conquer the summit of Mt. Kilimanjaro…at 11 pm. The plan was to hike through the night and arrive at the top after sunrise. The group donned their headlamps and stared off into the pitch darkness, one foot after the other.

“It was a step, step, step slow walk,” Mark remembers. “It was a pretty busy night on the mountain — there were a lot of other groups climbing at the same time, so we could see all of their headlamps up above and down below us.” 

The wind chill was close to 0 degrees Fahrenheit, and after some time, the initial excitement wore off and the group was losing steam. 

“Then, finally, we caught our first glimpse of the sun slowly peeking up from the curvature of the Earth,” Mark said. “The sun coming up warmed our souls and spirits and off we went. It gave us the second wind we all needed and there was this unspoken feeling of ‘I’m doing this no matter what!’ all throughout our group.”

As soon as the Kili-9 took their first steps onto the summit, it was mission accomplished. As they took in the 360-degree views of the scenery from on top of the world, they allowed the significance of their accomplishment and teamwork to wash over them. Mark thought back to when he flew in and saw where he was standing now from the airplane window.

The Power to Live Well (Everyone Has It)

Although his initial reaction to climbing a mountain with YOPD was “Who would be crazy enough…?” Mark proved to himself that he had the power to take on and achieve a seemingly impossible goal. 

“It’s the hardest thing I’ve ever done physically or mentally,” he recalls, “but knowing that I have PD and can still do these things that healthy people can do — and even some can’t — was absolutely worth it.”

For readers interested in making a climb like his, Mark has the following advice:

• Find a good organization or a good group of friends and/or family that you know and trust will support you along the way.
• Enlist a reputable guide company or an experienced individual who can help navigate and prepare you for the journey.

Mark hopes that his story will inspire and encourage other YOPD’ers to pursue big goals and take on those kinds of intimidating, yet rewarding challenges, without letting PD discourage them from living and experiencing their lives to the fullest.

PD meds may have complicated names, but we put together a simple breakdown of how some of the most common ones work.

Disclaimer: This post is intended to be strictly informative and is in no way offering medical advice. Talk to your doctor to determine which treatment course is best for you.

Although there is no definitive cure (yet) for Parkinson’s or Young Onset Parkinson's, medical research has progressed leaps and bounds in the past decade to provide us with a wide range of effective treatment options. However, doctors and scientists have a habit of choosing complex, hard-to-pronounce names for the drugs they develop, which can make learning about them more intimidating than necessary. So, we decided to break down how some of the most common ones work to help everyone understand them a bit better:

Amantadine - Originally developed as an antiviral to prevent influenza, Amantadine was found to improve mild Parkinson's symptoms like tremors, akinesia, and rigidity. 

Anticholinergics - Anticholinergics may be recommended to younger patients (like those with YOPD) who do not have significant akinesia or trouble walking to reduce bothersome tremor symptoms.

COMT Inhibitors - Catechol-O-methyl transferase (COMT) inhibitors may be used to prolong and enhance the effect of levodopa. They're primarily used for people who experience "wearing off" periods of motor fluctuations at the end of their levodopa dose. They have no beneficial effect when taken alone.

Dopamine Agonists - Dopamine agonists directly stimulate dopamine receptors in the brain. Clinical trials have found them effective for controlling Parkinson's symptoms but can be slightly less effective than levodopa and result in more side effects. 

Istradefylline - Istradefylline can be used to treat motor symptoms that can happen when levodopa "wears off" (similar to COMT inhibitors). It was approved for use in the United States in 2019, so more research is needed to fully understand its risks and benefits relative to other medications.

Levodopa - Levodopa is currently the most effective drug for treating Parkinson's symptoms and is particularly effective in treating those with bradykinesia. Tremor and rigidity have also been found to respond to levodopa treatment.

MAO B Inhibitors - Monoamine oxidase type B (MAO B) inhibitors work by blocking the effect of enzymes that inactivate dopamine and can modestly reduce PD symptoms. They also may allow dopamine to remain in the brain for a longer period before being broken down.

Knowledge is power, and learning more about how different drugs work to relieve and treat symptoms can be comforting when you enter the unfamiliar territory of Young Onset Parkinson’s. As stated above, this article is strictly informational and not intended to be taken as medical advice. Talk to a licensed physician to determine what treatment options are best for you or your loved one.

We all know that we need food, water, safety, and shelter for basic survival — but we tend to forget one critical need; the one that helps to give our lives meaning: community.

When faced with difficult situations, many of us tend to withdraw from friends and family or isolate ourselves as a coping mechanism. This is often true for newly-diagnosed Parkinson’s patients, especially those in the young-onset subset. Such a significant life change is overwhelming, and sometimes our knee-jerk reaction may be to ignore it or pretend that everything is okay. 

The problem is that it’s a short-term solution that ultimately creates distance between ourselves and the people we care about — which is exactly the opposite of what we need. Being part of a community can have positive effects on our physical, mental, and emotional health, and is, in fact, the most important need humans must meet after securing food, water, shelter, and safety (according to psychologist Abraham Maslow). 

The 3 biggest benefits of establishing community connections we’ve found through the Young Onset Parkinson’s Network include: 

1. Reducing Feelings of Loneliness

When we struggle with big, life-altering changes, many of us unconsciously assume that we’re the only ones who feel the way we feel or that no one can really understand our situation. This is especially true for those affected by a rare disease like YOPD, whether you’re a patient, care partner, family member, or friend. 

Joining a community of people facing similar challenges serves as a constant reminder that you’re not alone, and gives you a safe space to share your true self with others. In turn, being accepted by others fosters a healthy sense of belonging.

Feeling accepted and like you belong to something bigger can then make it easier to take care of yourself and participate in activities that improve your physical health.

2. Getting The Right Support

While we may want to believe it’s possible to get all the support we need from a significant other or a handful of close friends or family members, that’s a lot for one person (or even a small group) to be responsible for. 

A community of people with similar experiences can sometimes offer more appropriate advice or tell you exactly what you need to hear in a way that a husband or wife can’t. Oftentimes, support coming from these groups can also feel more validating since it’s coming from someone who “gets it.”

Lifelong friends may struggle to relate when you recall what happened on your last “off” day, but you may find unexpected comfort in hearing a total stranger say “That happens to me, too! Here’s what I’ve found that works…”

This doesn’t mean you should completely stop relying on your spouse, friends, or family members for support — this is more to say that joining a community can balance out your larger support system and allow you to seek advice and comfort from multiple perspectives.

3. Finding Purpose

Not only are communities a good way to get the support you need, but they also provide you with opportunities to find purpose. For example, when we spend time among a group of people, we tend to fall into natural roles. 

Perhaps you’re the one people go to for advice about intimacy and relationships with YOPD, or you find you enjoy spreading the word and inviting new members to join. Or maybe you’re the quiet observer who soaks up all this new information and uses it to improve yourself and your personal relationships. 

These kinds of roles can give you a sense of purpose through helping others, both of which can breathe new meaning into your life. 

Allowing yourself to be vulnerable and open to new people and experiences can be frightening and difficult — but the rewards of joining a community far outweigh the initial fear and discomfort. Being part of something larger than yourself sets you up to live a more enjoyable life by establishing meaningful connections, growing your support network, and rediscovering your purpose. 

Want to see what it’s all about? Click here to join the Young Onset Parkinson’s Network for free today.

Not only is knowledge empowering, but it's also a strong antidote for helplessness. In times of despair, let the reminder of how far we've come in PD research & treatment be the light that guides you back toward hope.

Let’s not beat around the bush: dealing with Parkinson’s can be discouraging. Whether you’re a patient, care partner, family member, or friend, the symptoms can be frustrating and it’s not uncommon to feel like you have no control over the situation. The good news is that there’s a reliable antidote for those feelings of helplessness: empowering yourself through knowledge. 

PD research has advanced by leaps and bounds since Parkinson’s-like symptoms were first described in ancient texts — and the whole global community continues to make valuable contributions. 

Here’s a timeline of some of the most notable research milestones we’ve reached throughout history: 

2,000 BC - 425 BC - Brief descriptions of PD-like symptoms appear across many ancient texts. 

169 AD - Galen, an ancient Roman anatomist & experimental physiologist, distinguishes the differences between “resting” and “intentional” tremors in his book “De Tremore, Palpitatione, Convulsione et Rigore.”

1228 - During the Jin-Yuan Dynasty, a Chinese physician named Zihe Zhang recorded a possible case of PD describing symptoms including tremors, stiffness, unexpressive facial features, loss of dexterity & finger movements, depression, a chronic progressive course, and poor response to drugs.

1690 - Clinical symptoms of PD are described in a textbook published by Hungarian physician Ferenc Papai Pariz, more than 120 years before James Parkinson published An Essay on the Shaking Palsy.

1817 - English surgeon James Parkinson publishes An Essay on the Shaking Palsy. This work is widely accepted as the first official identification and description of “paralysis agitans.”

1872 - French neurologist Jean-Martin Charcot renames “paralysis agitans” Parkinson’s Disease, after James Parkinson.

1899 - French physician Édouard Brissaud (who studied under Jean-Martin Charcot) is the first to suggest that PD pathologically originates from a damaged substantia nigra. 

This part of the brain controls movement, so when nerve cells in the substantia nigra die or become impaired, they cannot produce dopamine and subsequently cannot facilitate regular, healthy movement. 

1912 - German-born American neurologist Frederick Lewy observes aggregated inclusions or abnormal aggregations of protein that develop inside cells affected by Parkinson’s Disease. 

1919 - Konstantin Tretiakoff, a Russian neuropathologist, renamed Frederick Lewy’s aggregated inclusions “Lewy bodies,” and determined that these Lewy bodies are located in the substantia nigra in cases of PD.

1960 - Oleh Hornykiewicz, an Austrian biochemist, found that Parkinson’s patients had reduced dopamine levels in the striatum. Dopamine signals in this part of the brain are critical for things like motivation and motor learning.

1961 - French Canadian neurologist André Barbeau finds Levo-dopa (L-Dopa, a direct precursor to dopamine) to be an effective treatment for improving Parkinson’s symptoms.

1967 - Dr. Melvin D. Yahr introduced the Hoehn-Yahr scale for staging PD progression: 

1987 - French-Algerian neurosurgeon Alim-Louis Benabid introduced deep brain stimulation (DBS) as a surgical treatment for controlling PD tremors.

1997 - 85 years after the first observation of Lewy bodies, scientists identified over 50 proteins in this aggregated inclusion with α-synuclein being the most important component. 

That same year, Michael Polymeropoulos identified the α-synuclein gene (SNCA) as the first causal gene of PD, revealing future opportunities for genetic screening research.

2001 - The first double-blind control trial of a cell-based therapy for PD is conducted. 

2003 - German anatomist Heiko Braak proposes a pathological staging of PD in which he hypothesizes sporadic PD is caused by a pathogen entering the body via the nasal cavity, which is subsequently swallowed and reaches the gut, initiating Lewy pathology (LP) in the nose and digestive tract.

2006 - Chinese Dr. Zhuohua Zhang and his colleagues identified a link between the PINK1 and DJ-1 genes, demonstrating the potential for genetic inheritance of YOPD.

2009 - The Parkinson’s Foundation launched the Parkinson’s Outcomes Project; the largest-ever clinical study of the disease with over 13,000 participants across four countries.

2023 - An international coalition of scientists led by The Michael J. Fox Foundation discovered a biomarker for PD — abnormal α-synuclein proteins in brain and body cells. The discovery opens up a world of possibilities for improved treatment, further research, and the potential for newly-diagnosed individuals to never advance to full-blown symptoms.

If you’re still looking for hope after reading through this impressive progression of our PD knowledge over time, just think about the kind of technology available to us today. Think of how far we’ve come in terms of treatment, discovering drugs and interventions that allow those with PD and YOPD to live higher-quality lives. With all of the effort and care that has been poured into research over the years, it’s impossible not to look toward the future with hope.

Sources: 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5636740/

https://www.parkinson.org/advancing-research/finding-cure/research-milestones

https://www.michaeljfox.org/news/breaking-news-parkinsons-disease-biomarker-found

Even though uncertainty can be frightening, you have the power to change your mind — and the rest will follow.

Before Mike Quaglia was diagnosed with YOPD, he was hard at work making a name for himself in sales. After leaving the family business for a new position, he quickly rose through the ranks to achieve the title of #1 salesperson and was later promoted to manager.

He excelled in connecting with clients and enjoyed maintaining relationships with them. In fact, his interpersonal talents and people skills played a big role in his career success. Hosting golfing trips and treating clients to dinner was arguably his favorite part of the job. Mike had his sights set on running the whole company if things kept going his way. 

But they didn’t. And if they had, then he wouldn’t have this story to share.

In October of 2006 at age 42, Mike found out that he had Young Onset Parkinson’s Disease. Determined not to let it get in the way of his plan to become CEO, he pushed himself to continue on like nothing happened. That worked out for a while, but as time went on, symptoms began to pop up and interfere with his performance.

“It was like Parkinson’s kicked my brain,” he recalls. “It was all mental; I didn’t experience any of the physical symptoms back then. I just became more paranoid, depressed, and apathetic. I stopped communicating with everyone.”

Mike began to jump between jobs every couple of years, which he’d never done before. He withdrew from friends and family and watched the connections he worked so hard to cultivate crumble bit by bit. 

But it’s not that he suddenly and randomly decided not to care anymore — it’s that he was grappling with the mental and emotional implications of a disease over which he had no control. 

“I went from being really communicative to basically falling off the face of the Earth,” he remembers. “I hit the bottom around 2016 or 2017. But even though I had stopped talking to her the way I used to, my wife supported me through the whole ordeal. And I also have some really great friends and business partners that stuck by me, and who I still talk to to this day.”

With the support of his wife and friends behind him, Mike was ready to take some small steps toward positive change. The first was a conversation with fellow YOPD patient Heather Kennedy about separating thoughts from the self. 

“We talked about how to become more aware of our thoughts, understand they’re not part of ourselves, and let them go,” he said. “I knew that before, but talking to her just really solidified that concept for me.”

Following that conversation, Mike’s curiosity about the relationship between thoughts and feelings prompted him to give therapy a try.

“I went through three therapists before I found one I couldn’t BS,” he chuckled. “He helped me organize my thoughts and change my perspective. He also helped me understand how my brain is just reacting to things that happened in the past, and how to use that to stop worrying so much about the future.”

Not long after, small steps turned into bigger steps. 

Mike began to open back up to his wife again, which led to the couple training for and running the Boston Marathon together in 2019. Not only did it set the tone for a more physically healthy lifestyle, but training also gave them the chance to spend more quality time together. 

And while he didn’t return to his pre-diagnosis career in sales, Mike reignited his passion for connection and meeting new people through hosting podcasts. In fact, you can listen to him and his team interview guests about various topics relating to YOPD on the YOPN Living Well Starts Here^SM podcast.

Mike’s experience serves as a hopeful reminder to the recently diagnosed that it’s always possible to find joy and fulfillment — even when your life takes an unexpected turn. When asked to sum up what he’s learned to share with fellow YOPD’ers, his advice is: 

1. Don’t shut yourself off from the people that love you. 

2. Remember you’re still the same person.

3. Find your passion and go after it, regardless of whether or not it makes you money.

4. It’s okay to reorganize your mindset and your plans — the rest will follow.

Sometimes our greatest challenges turn out to be blessings in disguise.

Maintaining relationships is a common challenge for almost everyone. Keeping up with close friends, nurturing romantic partnerships, and staying connected with family all take significant work. While throwing a Young Onset Parkinson’s diagnosis into the mix can make that challenge all the more difficult, it can also end up making those relationships richer, deeper, and more meaningful. 

Melissa was diagnosed with YOPD in August 2020, right at the height of the pandemic. The news was hard to handle on top of all of the uncertainty and upheaval caused by Covid, so naturally, she turned to her boyfriend for support. Two days later, she discovered that he was cheating on her. Needless to say, he didn’t handle the diagnosis very well. 

Newly single, Melissa returned to the dating scene in extra-hard mode: Not only did she have to contend with the difficulties of the lockdown, but she also had to navigate dating as a single mother of children with special needs in addition to her diagnosis. 

“It’s actually harder to date as a special needs parent than as a PD parent,” she recalls. In her experience, sexual partners were still eager for intimacy and interested in learning how to make it work despite her physical limitations. 

“It definitely takes more planning,” she said. “It takes a partner who is patient and understands the symptoms and their unpredictability. There are times when that gets in the way and it can be disappointing, but I’ve had a pretty good response to it [intimacy] so far since my symptoms aren’t as progressive.”

Melissa also touched on the importance of being open and honest about YOPD. To maintain healthy relationships in general, she says “You need to be open to sharing your reality in a realistic way.”

Approaching intimacy with this mindset helped her to relax and enjoy herself since she didn’t have to worry about hiding that part of herself from her sexual partners. 

Beyond sexual relationships, openness and honesty made positive impacts on her friendships and family relationships, too. 

“My kids are really open about it [YOPD] and will talk openly about it in front of other people like it’s normal, so it helps other people adjust and get more comfortable with my diagnosis,” she said. “That really helps when I’m meeting up with friends that I haven’t seen in a long time that might not know about it yet, especially if I’m having an ‘off’ moment in front of them.”

While being upfront about her experience has helped ease the tension and bring her closer to some, Melissa notes that others can still have a hard time understanding and accepting her condition. 

“I talked to my Dad about it one day and it was really hard for him to swallow. But I was able to explain to him that I’m still happy and living a high-quality life — and that I may even be happier now than I was before the diagnosis,” she recalls. “Sometimes you have to work with people to help them see a different perspective.”

The past three years of living with YOPD have helped Melissa to develop a more positive outlook on life, strengthen her relationships, and achieve deeper levels of personal growth. When faced with challenges that initially seemed impossible to overcome, she focused on their learning opportunities and now looks back at her progress with gratitude.

Whether it’s about romantic relationships, sex, friendships, or your relationship with yourself, Melissa recalls the most important piece of advice she’s ever received: Take advantage of the now.

If you enjoyed learning about Melissa’s story and want to learn more about living well with YOPD, Young Onset Parkinson’s Network members get exclusive access to speaker series events, virtual community gatherings, and more. Click here to join for free today.

Have you ever wondered where all the official PD symbolism comes from, or why April was specifically chosen to celebrate Parkinson's Awareness Month? 

The answer is that it’s the birth month of James Parkinson, the London physician who was the first to describe a PD case in 1817. At that time, he was most known for authoring a work titled An Essay on the Shaking Palsy in which he described “paralysis agitans.” 

The name “Parkinson’s Disease” as we know it wasn’t coined until about 60 years later, by French neurologist and professor Jean-Martin Charcot. 

The first official World Parkinson’s Day was recognized on April 11th, 1997 — Which would have marked James Parkinson’s 242nd birthday. 

But what about the other iconic symbols associated with Parkinson’s? 

The Tulip - In 1980, Dutch Horticulturist and Parkinson’s patient J. W. S. Van der Wereld developed a red and white tulip. The following year, he named his prized cultivation after James Parkinson to honor both the man who discovered his disease and 1981 as the International Year of the Disabled. 

On April 11th, 2005, Van der Wereld’s tulip was named the worldwide symbol of Parkinson’s Disease at the 9th Annual World Parkinson’s Day conference in Luxembourg.  

Interestingly, the famous stylized tulip logo with leaves shaped like a “P” and a “D” was designed by a Young Onset Parkinson’s patient named Karen Painter. The symbol was universally adopted by the Parkinson’s community in 2010.  

 

The Ribbon - Similar to the pink breast cancer ribbon associated with the Susan G. Komen Foundation, Parkinson’s Disease has a ribbon, too! The official color is grey or silver, depending on who you ask.  

There’s no official reason provided for the color choice, but some like to think grey was picked to represent the “grey matter” in the brain that’s affected by the disease. 

The Raccoon - Yes, you read that correctly — PD has its very own mascot: Parky the Raccoon. 

Parky came about in 2013 when WPC Ambassador Bob Khun decided to travel around the world with a cardboard cutout of a raccoon. Since the animal is only native to North America, the cutout served to capture peoples’ attention so he could spark conversations about PD. 

According to the World PD Coalition, a few other reasons the raccoon was chosen include:  

• A raccoon’s distinctive mask represents the “Parkinson’s Mask” 

• PD can affect sleep, and raccoons are often nocturnal 

• They’re highly curious, adaptive, and inventive problem-solvers — much like those with PD who implement creative solutions for their limitations in mobility and dexterity 

You can even visit WhereIsParky.org to find out where Parky is in the world right now. 

To Sum It All Up - While these icons and symbols are fun, they also serve the greater purpose of spreading awareness about PD. After all, that’s what this month is all about, right?  

Looking back to see how much we’ve learned about Parkinson’s and how the community has grown since An Essay on the Shaking Palsy was published in 1817, the future of PD awareness and research has never looked brighter.  

What groundbreaking new discoveries are next? 

Parkinson's Disease doesn't just affect the elderly, and that means disability benefits aren't exclusive to them, either. Even with YOPD, it's important to get to know the basics of Social Security Disability Insurance.

Disability benefits were created to provide financial support to those who are unable to work or who are losing wages due to non-work-related illness, injury, or pregnancy. If you qualify for benefits, the US government provides a percentage of your income as a method of financial assistance.

Although most tend to associate disability benefits with the elderly, you may still qualify and take advantage of the program if you have Young Onset Parkinson’s Disease (YOPD). The amount of money you receive varies depending on the severity of your particular case. 

How Qualification Works

The Social Security Administration (SSA) provides a list of conditions that qualify a person for disability benefits, called the Blue Book. Based on section 11.06 of the Blue Book, if you’re unable to work for 12 months or longer due to YOPD, you may be considered disabled and qualify for the program.

If you meet the SSA’s Blue Book criteria, then additional steps are taken to confirm your need for the program’s support. 

What Criteria Need to Be Met to Qualify?

You may qualify for disability benefits if you still experience the following despite taking your prescribed treatment for three consecutive months: 

• Disorganization of motor function in two extremities
• Extreme difficulty standing up from a seated position 
• Extreme difficulty balancing while standing or walking
• Extreme limitations in using the upper extremities

Or if you have marked limitations and/or difficulty with: 

• Comprehending and applying information
• Social interactions 
• Concentration 
• Adapting to new situations

How to File a Claim for Disability Benefits?

1. Make a list of how your symptoms have consistently impeded your ability to work.

2. Gather and organize information about your treatment providers and any other notes that relate to your diagnosis.

3. Talk to your doctors and coordinate with them to certify your qualification through their reports and claim forms.

4. Fill out the Social Security Disability Insurance (SSDI) claim online or schedule an appointment to do so in person.

5. Proactively gather and submit your medical records to the SSA to ensure that nothing is overlooked, and make sure to save copies and proof of what you sent in case you need to back up your claim.

It can take anywhere from three to five months to receive a response to your claim submission, so don’t delay taking the steps above if you believe you qualify. 

Bottom Line

These are just the basics for understanding and getting started with disability benefits. The process can be overwhelming and confusing at times, so it’s important to remember that you don’t have to navigate it alone. Engage with your support system when you need to, whether that means friends, family members, a care partner, or our YOPN community. 

Sources:
How to Qualify for Disability with Parkinson's in 2023

APDA Social Security Disability Insurance

 

 

Cognitive distortions can warp your sense of reality. Here’s what they look like and how you can identify them to see things for what they really are and improve your mental health.

Cognitive distortions are negative thinking patterns based on emotion rather than facts or reality. When it comes to anxiety and depression, these thought patterns play a big role in perpetuating and even exacerbating mental health issues — and this is especially true for those who suffer from Young Onset Parkinson’s.

We know that people living with YOPD are prone to more challenging psychological issues compared to those who are diagnosed with PD later in life. Recognizing and understanding your own cognitive distortions at work is highly beneficial to maintaining your mental health and improving emotional regulation. 

Polarization

You may already know polarization as an “all-or-nothing” or “black-and-white” mindset. You experience polarization when you only consider the extreme outcomes of a situation. 

Thinking that YOPD is either going to ruin your life forever or somehow turn out to be the best thing that ever happened to you is an example of this kind of thought pattern. 

The antidote: Remind yourself that two things can be true at the same time, and shades of grey are much more common than perfect boundaries of black and white.

Overgeneralization

Have you ever had one of those “off” days and caught yourself thinking that this is it and you’ll never function any better than this again? That’s an example of overgeneralization or assuming that one negative event means that every subsequent event is going to be negative, too. 

The antidote: Remember that this negative experience won’t last forever and that you have the power to not let one bad day control your entire week.

Personalization

This is one of the most common cognitive distortions and contributes a great deal to anxiety, in particular. Personalization happens when we take things personally even though they’re not connected to or caused by us at all. 

“I wasn’t invited to that party because my tremors make everyone uncomfortable” is an example of a personalized assumption. In reality, it’s much more likely that your invitation got lost or it slipped the host’s mind — something that has nothing to do with you, your traits, or your characteristics. 

The antidote: Challenge your assumptions. Can you think of any other, possibly more realistic explanations? Can you try to see the situation from a different, non-personal perspective and focus only on the facts? 

Mental Filtering

Ignoring the positives and focusing exclusively on the negatives of a situation is a type of distorted thinking called mental filtering. 

Maybe you or your Care Partner only focus on the ways that YOPD has hurt your relationship and forget about the ways it’s brought you closer together or made your partnership stronger.

The antidote: For every negative thought, challenge it with an opposing positive thought about the situation. You might be surprised by how many positive thoughts you can come up with.

“Should” Statements

“I feel so lazy right now because I should be exercising instead of resting.”
Pause. Statements like this are often rooted in deeply internalized family or cultural values. Oftentimes, these values are not appropriate or applicable to you as an individual. Perhaps you are resting because you’re tired, and that’s what your body needs right now. 

The antidote: Ask yourself if the expectation that follows that “should” is realistic given the context of the situation. Most of the time, it isn’t. 

Catastrophizing 

This distortion happens when we jump to the worst conclusion despite there being little to no evidence to support that conclusion. 

For instance, you’re unable to make it to your child’s soccer game this time around because your YOPD symptoms are kicking your butt today. A person who catastrophizes may begin to fear that this will cause irreparable damage to the relationship and that their child will grow up hating them and never speak to them again. 

The antidote: Review the evidence and/or the facts of the situation. Does any of it support this hyper-negative conclusion?

The Bottom Line

There are plenty of other cognitive distortions that explain why and how our thoughts can trigger such strong emotions. The main way to manage them is to learn how to recognize when you’re experiencing a distortion, and then reframe your thinking so you can look at the situation from a different, calmer, clearer perspective. 

Reflecting on your thinking patterns and the feelings they cause is a great practice to maintain your mental health.

"Yes, and?" Improv classes are emerging as the next big thing among the YOPD community.

Some common advice for maintaining quality of life with Parkinson’s includes staying physically active, paying attention to your nutrition, staying on your meds, and focusing on your mental health. But recently, a more unique activity has been gaining traction among the YOPD community: Improv. 

After her diagnosis in 2015, Susan Scarlett found herself feeling scared and withdrawn from her normal life and activities. Fortunately, her support system kicked in and family and friends helped her to stay active and seek out new opportunities for keeping busy and enjoying life. 

When her nephew, Adam, set out to break a world record by swimming the length of Lake Okanagan, he dedicated the feat to Susan to keep her motivated and inspired to live fully despite her diagnosis. They trained together and ended up filming a documentary about the experience called Victory Swim.

Dr. Robert Cochrane, a Ph.D. student who was studying the effects of improv on Parkinson’s patients at the time, saw the documentary and invited Susan to participate in his clinical trials. And thus, Susan began her improv journey. 

For those who are unfamiliar, improv is a form of live acting (typically comedic) in which the situation, characters, and dialogue are all made up on the spot. No scripts, just saying what comes to mind.

“I was very shy and inexperienced at first,” she recalls. “I’d never performed and lacked the self-confidence to be in front of an audience like that. But about two and a half years into it, I realized I wasn’t just naturally shy — I was afraid.”

Most of us are familiar with how it feels to fear failure and judgment, but when you throw in a neurological disease that affects your motor function, those feelings can become debilitating. Parkinson’s patients often have to deal with this extra layer of self-consciousness about their speech and movement in addition to any existing insecurities, which is, without a doubt, emotionally exhausting. 

“The way Robert teaches, he celebrates words like ‘fear’ and failure,’” she says. “We truly get to experience failing and making big mistakes, but in a safe environment where we celebrate them and there’s no judgment.”

Having regular opportunities to practice openness, acceptance, and forgiveness among a community of peers struggling with the same thing has helped Susan to build her confidence back up after her diagnosis. She now attends regular Improv group sessions run by Dr. Cochrane. 

“It helps you to change your mindset and your perspective on your situation. Practicing improv has helped me to build up trust and respect for myself and others, which really helps with the depression a lot of Parkison’s patients experience.”

Susan describes her improv practice as having taken her from her post-diagnosis paralysis to blooming into a more active person and taking on things she never imagined she would do. Since participating in Dr. Cochrane’s clinical trials, she has attended events as a keynote speaker and feels a new sense of purpose, pride, satisfaction, and delight in her life. 

Who knew that a seemingly playful activity could result in such profound and positive implications for those living with Parkinson’s? To learn more about Susan’s story or find out how you can get involved in Improv, visit https://www.yesandexercise.org.