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.

While building healthy nutrition habits can benefit everyone, building specific nutrition habits around your symptoms can help those living with YOPD.

It’s no secret that eating whole foods and plant-based meals has benefits for everyone, but did you know that your food choices can impact the symptoms and progression of YOPD?

While there are no hard and fast ground rules for exactly what meals to eat and how to prepare them, there are guidelines that you can follow for both a healthier diet and to ease your symptoms. Here are some tips to help you build some personalized, healthy nutrition habits.

Drink Your Water

Drink 6-8 glasses of water per day and remember to take your medications with a full glass of water. Staying hydrated can help with digestive issues and ease constipation, and a full glass with your meds can help your body break them down more efficiently.

Vitamins & Minerals

Aim to fulfill your vitamin, mineral, and fiber requirements by eating plenty of whole grains, vegetables, and fruits. 

To maintain bone health, you can introduce more Vitamin D into your diet by consuming milk products, egg yolks, and fatty fish. Check with your doctor to see what your Vitamin D levels are and whether you need more before making this dietary change.

Sugar, Caffeine, and Alcohol

Keep an eye on your sugar intake. While it’s calorie-dense and can fill you up for a short period of time, it has few nutrients. 

While you don’t have to cut it out completely, drink alcohol in moderation. Cocktails contain little to no nutrients and may not be advisable to mix with certain medications. Check with your doctor to determine what’s best for you. 

Limit how much sugar, alcohol, and caffeine you consume right before bed. The fewer of these in your system as you lay down, the better you’ll sleep.

Salt & Fat

Pay attention to and limit how much salt and sodium you consume — eating too much can increase your risk of high blood pressure.

Stay away from saturated fats and cholesterol to reduce your risk of heart attack and certain types of cancer. 

Healthy Diet, Happy Brain

Eat antioxidant-rich foods, like brightly colored and dark fruits and vegetables. Why? Because antioxidants are important for your overall brain health.

To promote brain health, snack on walnuts and cashews. Salmon, Tuna, and dark, leafy green vegetables also have an ant-inflammatory effect on the brain. 

Exercise

In addition to eating a balanced diet, make sure you’re getting enough physical activity.

Talk to your doctor and find out what a healthy weight looks like for you and try to maintain it. This reduces your chances of developing high blood pressure, heart disease, stroke, certain cancers, and common types of diabetes.

Dealing with the Challenges

With YOPD, you may notice that you’re eating less and losing weight. This is fairly common as a result of nausea from medications, movement symptoms making it difficult to eat, and difficulty swallowing. If and when you notice them, be sure to address these issues with your doctor.

Challenge	Solutions
Decreased Appetite	Exercise to increase hunger  Try eating bitter greens or spicy foods to stimulate appetite
Tremor, stiffness, and/or difficulty swallowing	Opt for foods that are softer and easier to swallow Put your dishes on rubber mats to prevent them from slipping
Dehydration	Eat foods with high water content, like celery, butternut squash, grapefruit, strawberries, and watermelon

Different combinations of these tips can work for different people, depending on your unique symptoms and experiences with YOPD. Be sure to consult your physician before making any drastic lifestyle or nutritional changes to make sure that you’re headed down the path that’s right for you. 

"Sometimes a simple definition can make all the difference."

Being diagnosed with Young Onset Parkinson’s Disease is overwhelming. New patients tend to have a million thoughts racing through their minds after hearing the news, and not uncommonly do they experience feelings of helplessness or fear.

However, one thing that helps us feel more in control again is being able to define and label the unknowns, which makes them less frightening than we initially thought.

If you or a loved one has recently been diagnosed with YOPD, we hope that this glossary of common terms helps you to both understand the condition better and reduce any anxiety you might be feeling.

Akinesia - Inability to move or issues with initiating and/or maintaining a physical body motion.

Ataxia - A movement disorder characterized by decreased muscle coordination and loss of balance during voluntary movements. 

Bradykinesia - The slowing down and loss of spontaneous, voluntary movement.

Deep Brain Stimulation (DBS) - A surgical procedure in which a device similar to a heart pacemaker is implanted in the brain and used to deliver electrical stimulation to areas that control movement, blocking the abnormal nerve signals that cause tremors and other PD symptoms. This procedure is currently used for patients whose symptoms are not satisfactorily controlled by medications.

Disequilibrium - Issues with balance or unsteadiness; a common experience in those with YOPD.

Dopamine - A neurotransmitter that helps control movement, walking, and balance. The primary cause of PD patients’ motor symptoms is lack of dopamine.

Dopamine Agonist-  A type of drug that binds to dopamine receptors and mimics their role in the brain to produce dopamine-like effects.

Dysarthria - Slurred or impaired speech; a common characteristic of Parkinson's disease.

Dyskinesia - Frequent uncontrollable and involuntary movements that are a common side effect of levodopa treatment. These movements are often characterized by jerky and lurching motions.

Dysphagia - Difficulty swallowing. Can be painful for those experiencing it.

Dystonia - A movement disorder characterized by abnormal posture and sustained hand or foot movement, and can also be accompanied by twisting and rigidity. Dystonia is often confused with Parkinson’s disease.

Facial masking - When the face is immobile with reduced blinking.

Familial Parkinson's Disease - A form of Parkinson’s disease (that may account for less than 5% of worldwide cases) in which it is believed the condition may run in families and be passed on through genetics.

Festination - A spontaneous shuffling or quickening of steps after starting to walk.

Freezing - Sudden inability to move that often happens when beginning to walk or cross a boundary such as walking through a doorway or exiting a car.

Hypokinesia - A term used to describe the slow or diminished movement associated with Parkinson’s disease.

Levodopa - Also called L-dopa, the most common drug used to treat Parkinson's symptoms that works by restoring the dopamine responsible for smooth, coordinated movement and other functions.

Lewy bodies - Irregular clumps of protein that indicate the deaths of dopamine-producing cells. The presence of Lewy bodies is used to confirm a Parkinson’s diagnosis during autopsy.

Micrographia - Small, cramped handwriting. A common symptom among Parkinson’s patients.

Neurodegeneration - The slow, progressive death of certain brain systems observed in Parkinson’s, Alzheimer’s, and Lou Gehrig’s (ALS) diseases.

Olfactory dysfunction - Impaired ability to smell. Can be an early sign of Parkinson’s disease.

On-Off phenomenon - The cyclical pattern in which patients on Parkinson’s medications can function adequately at times, but then become too stiff or immobile to function at others.

Parkin - A gene whose mutations have been associated with a familial form of Parkinson’s disease.

Pill-rolling - A slow tremor observed in Parkinson’s patients in which they alternate moving their thumb and forefinger, appearing as if they’re rolling a small object between them.

Resting tremor - An involuntary movement that affects a limb at rest and will stop for the duration of a voluntary movement. This is one of the most common clinical signs of Parkinson’s disease.

Rigidity - An unusual amount of stiffness in a limb or other part of the body. Rigidity is often one of the most apparent symptoms of Parkinson’s disease when patients undergo examination.

Sinemet - The brand name for levodopa, one of the most commonly prescribed medications used for treating Parkinson’s.

While labeling and defining terms like these can help a little, joining a supportive community can help a lot. YOPN members have access to a wide range of resources, activities, and opportunities that allow them to continue living well despite the diagnosis. Visit https://yopnetwork.org/Join to learn more or sign up.

Source: Michael J. Fox Foundation. Glossary of Terms. https://www.michaeljfox.org/glossary-terms (accessed September 12, 2022).

Google defines gratitude as “the quality of being thankful; readiness to show appreciation for and to return kindness”... but it’s so much more than that.

Research confirms that when we practice gratitude, it helps us to feel happier, enjoy positive experiences more deeply, and build stronger relationships. And, according to previous YOPN Guest Speaker Linda Burton, practicing gratitude may have a strong neurological impact on us, too.

Whether you’re expressing appreciation for your Care Partner or silently thanking the universe for another beautiful day, those little actions cause your brain stem to release dopamine — a chemical that makes us feel good, and triggers positive emotions. 

When you journal or reflect about things in your life for which you are grateful, your brain also releases serotonin — a mood-enhancer that boosts our willpower and motivation.

The more often we take actions that release these chemicals (in other words, the more often we practice gratitude), the more we’ll start to notice and focus on the good things instead of the bad. The benefits (according to this study) of that shift in focus are profound:

●      Less exhaustion

●      Less cynicism

●      More proactive behaviors

●      Higher job satisfaction

●      Fewer absences due to illness

Who wouldn’t want all of that? Now that we have an idea of the kind of impact gratitude can have on our lives, here are five ways you can start practicing:

1.  Show Appreciation for Your Care Partner  Take some time to write a little thank you note for all they do, or randomly surprise them with their go-to Starbucks order. Not only will it brighten their day, but it will also have positive physical and mental impacts on you, too!

2.  Take Stock of Your 5 Senses  Sit quietly wherever you are and identify one thing you can see, one you can hear, one you can touch, one you can taste, and one you can smell that you’re grateful for in that moment. This is also a great grounding exercise that can help ease anxiety.

3.  Make a List of the Little Things  All too often, we tend to focus so much on the big things that we forget to “stop and smell the roses.” A great way to practice gratitude is to make a list of seemingly insignificant things you experienced during your day (like how nice the breeze felt earlier, or a nice conversation you had with a friend), and read over it when you’re finished. You might find that those things aren’t so insignificant, after all.

4.  Give Back  A quick and easy way to get yourself into a more grateful mindset is to give back to someone or something who has helped you. This could be anything from sending your neurologist flowers to making a donation to an organization like YOPN. 

5.  Make Time to Be Present  Being present in the moment is key to practicing gratitude and reaping the benefits. Pausing and savoring the moment, no matter how big or small, is great practice. If you’re not sure how to become more present, meditation can be a wonderful tool to help you learn.

The second in our two-part series on traveling with YOPD.

Mobility is an important factor that affects how you travel. For those of us with YOPD, that means we have to dedicate more time and consideration toward how we plan to get from point A to point B.

Here are some tips to help you stay on schedule and comfortable en route.

1.       Consider how you want to make the trip. Each mode of transportation offers pros and cons. For instance, even though it might take longer to arrive by train than by plane, trains allow you more freedom to move around during the journey. Be sure to consider your personal needs and decide which method of travel will be most comfortable for you.

2.      Book tickets for your highest-functioning time of day. Since you’ll be moving around quite a bit and traveling can be a stressful experience, it’s best to try to time the busiest parts of your trip for a time when you know your body will be at its best.

3.      Give yourself plenty of time. If you need to catch a connecting flight or check into your hotel by a certain time, be sure to allow more time than you think you need between each leg of the trip. That way, if you’re moving slower than normal or run into delays, you can ensure you keep stress levels to a minimum.

4.      Don’t be ashamed to use accommodations. That’s what they’re there for! If being escorted to your gate via wheelchair or boarding the plane early will make things easier, do it! You might even get the first pick of overhead bin storage!

5.      Carry a cane or a walking stick. Seriously — hear us out. Travel is stressful by nature, which can impact your physical function. Having something you can lean on and use for support is never a bad idea. It also signals to other travelers that you need space, preventing you from getting caught up in crowds. 

6.     Build mobility breaks into your travel itinerary. If you’re taking a road trip, map out where and how often to stop, so you can get out of the car and walk around. If you’re limited to an airplane cabin or a train car, consider doing seat stretches and walking up and down the aisle when you can to keep your muscles limber and reduce cramping.

The first in our two-part series on Traveling with YOPD.

We all know that packing for a trip can be a pain, and despite the checklists, we always manage to forget something. It’s no big deal if that something is a toothbrush, but when you arrive at your destination to find that you left your medication at home…that can put a damper on your trip very quickly.

Making sure that your medications are well organized and accessible during travel can be especially more challenging for people living with Young Onset Parkinson’s and other chronic issues. Here are some packing and prepping tips to keep you covered so you can spend time enjoying your vacation rather than worrying about your meds.

1.        Bring more than you need. It’s always better to have it and not need it, instead of needing it and not having it.

2.      Pack your meds in multiple bags. We recommend you carry some in your carry-on and some in your checked bag, just  in case you run into any issues retrieving your luggage. It’s also a good idea to pack some in your care partner’s carry-on and/or checked bag if you’re traveling together.

3.      Make sure everything is labeled properly. Authorities can confiscate pills and other medications if you can’t prove what they are. It’s always a good idea to carry your prescriptions in their labeled Rx bottles. It also doesn’t hurt to bring a list of your prescriptions, so you can keep track.

4.      Set reminders or alarms on your phone for when it’s time to take your medication. It’s easy to forget when you’re having fun outside of your regular daily routine.

5.      Keep time zones in mind. If you’re traveling to a different time zone or out of the country, make sure the reminders or alarms you set are consistent with what your body needs. Double check with your doctor to make sure you keep on the right schedule.

6.      Account for extra doses. We often pack a lot more activities into our days when we’re on vacation, and end up staying awake later than normal. Make sure to account for this and be prepared to take any extra doses, if needed.

7.       Check in with your doctor before traveling. While you’re allowed to travel with liquid medications greater than 3 ounces, you’ll need to provide documentation from your doctor in order to pass through airport security with them. This applies to substances like the gel form carbidopa/levodopa for the US-approved Dopa pump. Be sure to pack these in your carry-on, and not in your checked luggage.