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No Matter Your Age, We’re in This Together

fires, silent symptoms, marriage, tasks, bucket lists, forgetfulness

I recently read that Parkinson’s disease affects an estimated 1 in 100 people over age 60. When I started my Parkinson’s journey, I was in high school.

I didn’t know that what was happening to me was something known as Parkinson’s disease. I didn’t even know what Parkinson’s disease was or what it was capable of. I was a young’un in the community, unaware that there were Parkinson’s communities, too.

My symptoms were minor at the time, but they existed. Sometimes they were hard to ignore, but ignore them I did. 

I soon had small children to distract me. As they began to grow, so did the number of calendar entries, which led to more distractions. Meanwhile, I continued to ignore my symptoms, but eventually, it became obvious I couldn’t ignore them any longer, so I scheduled a doctor’s appointment.

I’ve often thought about the transition from young-onset Parkinson’s disease to “normal” Parkinson’s. Is there a time of transition, or does one simply slide from one into the other? If diagnosed with young-onset Parkinson’s, when does it become “regular” Parkinson’s? 

According to the statistic I previously mentioned, what I refer to as “normal” Parkinson’s disease occurs at the age of 60 or older. Young-onset Parkinson’s is said to occur generally between the ages of 21 and 50. In rare cases, it has been diagnosed at an earlier age than 21.

I have spent the last decade journeying through the years that Parkinson’s statistics seem to pay little attention to: 50- to 60-year-olds. But rather than feeling overlooked or left out from the Parkinson’s crowd during my 50s, I feel blessed. This is because I discovered early on what was happening inside of me. I learned earlier than most that life, and those with whom we share it, should never be taken for granted. 

Many live as if life will never end. But people with a disease are aware their bodies are giving out. 

It’s been said that Parkinson’s disease usually progresses more slowly when diagnosed at an earlier age. Being attuned to this fact, I have strived to to get as much out of life as I can. 

My life may not compare to someone else’s in terms of activities. I haven’t climbed mountains, run marathons, ridden an ostrich, or caught a greased pig as a means to advocate and go all out for Parkinson’s awareness. Those weren’t the opportunities afforded me, nor do I think they are my purpose in having this disease. We are not all called to do the same things. Some of us climb our mountains, some walk the trails, others swim the seas, and some, like me, write about it.

One of my favorite opportunities in living fully is spending time with my family, especially my grandkids. By seizing the opportunities to care for my little “grands,” my energy has come on strong when I needed more of it. I think there is something magical about grandkids that makes magic like that happen.

Whatever your opportunities or choice in how you spend your precious time are, seize every moment. You may be a young-onset person with Parkinson’s or a person with “regular” Parkinson’s. You may be floating somewhere in the middle, trying to navigate life in your 50s. Wherever you are, keep moving forward, keep pressing on, and don’t give up. We’re in this together, no matter how old we are.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Is Parkinson’s Disease Coming Out of the Shadows?

normal

We all want to feel that we have something we can depend on, something we can call “normal” in this fight against Parkinson’s disease. But Parkinson’s is anything but normal. 

You might have heard that each person with Parkinson’s wears the disease differently. How the disease manifests is unique to each individual. Not only do the symptoms vary according to the individual, the treatments can also differ. A therapy that seems to be working wonders for one person may not make the slightest difference to another. 

Snowflake diseases

Parkinson’s is sometimes referred to as a “snowflake disease” based on the fact that no two snowflakes are alike. The snowflake analogy describes how no two cases of Parkinson’s are the same.

In her column “Disabled to Enabled,” Jessie Ace discusses this, stating that, “MS is sometimes called ‘the snowflake disease’ because each case is unique.”

An autoimmune disease called myasthenia gravis, characterized by a weakening of voluntary muscles, also is referred to as a “snowflake disease.” With so many snowflakes falling under the guise of many different diseases, it is easy to get confused about what disease you have and how it should be treated.

Changing perspective

What used to be an “abnormal” and rare disease seems to be more commonplace. At least it can sometimes appear like that to me. One thing that isn’t common is the young age at which some people first show signs of Parkinson’s. What used to be considered an “old person’s disease” is being seen in younger people, too. 

As life expectancy increases, Parkinson’s may become more common. But what about the younger crowd — those with young-onset Parkinson’s disease? This group, which comprises those diagnosed before age 50, accounts for only 2 to 10 percent of those living with Parkinson’s in the United States. In rarer instances, Parkinson’s-like symptoms can appear in children and teenagers — a form of Parkinson’s called juvenile Parkinsonism.

Research has helped to improve and speed up the diagnostic process for this disease (however slow it may seem), and so it makes the “abnormal” chronic illness known as Parkinson’s disease seem more “normal.” But we need to move faster to raise awareness and help with fundraising efforts for research toward more advanced treatments. Or better yet, a cure for Parkinson’s to take it out of the running entirely.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Repeat After Me: ‘I Am Not a Burden’

burden

Some of us may think we’re a burden when perhaps our issue is pride. We don’t want to be a burden because we’ll think less of ourselves if someone has to care for us. Or, we may think others will think less of us if they have to care for us. If it is a pride issue, we will become a burden with a really bad attitude. Stop that.

We are all dealt different cards when exiting the womb. Not everyone crawls away with a royal flush in the game of life, having all their wants and needs taken care of. What we do with what we have been given — great or small — is what matters. Will we sit and throw a pity party for ourselves because we were dealt the Parkinson’s disease card? Or will we dig deep for our grit, pull up our bootstraps, get up from that chair (or couch), and start living?

Years ago, a friend of mine lost her mother who was also her best friend. Toward the end, she spent each day sitting with her mother, reading to her, making her laugh, singing to her, watching her sleep. And then it was time. Her mother passed away.

My friend has young-onset Parkinson’s, but she refuses to let it get the best of her. It often takes her energy, spunk, and drive, but she keeps going. She struggles to walk, and yet she walked miles when caring for her mother — back and forth to the kitchen, helping her mother to the bathroom, and performing many other duties.

She makes cards for friends to encourage them even though she struggles to move her fingers. She is severely limited in her movements much of the time. She is also more giving than most people I know who don’t have a disability.

She doesn’t consider herself a burden because she isn’t. Whatever she can do, you will see her doing it. She may perform tasks more slowly than she used to, but she’s still doing it — and it is usually something to help others.

Do you feel as if you are a burden to others? That you will become a drain on their life? We need to stop thinking like that and get on with living our life now while we still can. And if we tackle some hard issues now instead of leaving them for later, it will make things easier in the future.

For example, at what point will extra help be needed? When should we consider nursing care? Discuss these issues now. Don’t wait for later. This will relieve some of the fears we tend to dwell on that can lead us to feel like a burden.

The disease you struggle with now may end up taking you down a rougher road than your current one. Then again, maybe it won’t. But for now, pull up those bootstraps, get out of that chair or off that couch, and live your life as fully as possible. Keep your head up and keep smiling. If you weren’t the smiling type before, start now. Someone needs you and you need them.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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I Have Parkinson’s, but I Won’t Let It Have the Best of Me

best

I’m unsure about how I feel today, but I am certain it’s not me. I am not at my best.

Tired and weary, I am running this race against time. I hope I am running it well. We all believed, at one point or another, that we had a limitless supply of time. We couldn’t wait to grow up. And while we were daydreaming about getting older — and hopefully wiser — those who had reached adulthood wished to be young again. None of us — young or old — ever dreamt of having a sidekick called Parkinson’s disease. Some “thing” that would insist on stealing the show, taking our inexhaustible dreams and infinite wishes, leaving us exhausted and apathetic.

Dreams and wishes

During sleepless nights, I can be tired and weary. I often wonder what it would be like to be young again. The young before the young-onset Parkinson’s disease stepped into stride alongside me, somewhere during my first 30 years of life. The days when I dreamed of being all that I could be while feeling something pulling me in another direction.

Thief of time

Chronic diseases can rob us of time. They can plunder our lives and steal our hopes and dreams. They can ruin our relationships, but we aid and abet them by becoming antisocial and stepping away for unsubstantiated reasons. 

We think that we don’t speak loudly enough for others to hear us, so we take one step away. 

We are convinced others don’t want to spend time with us, so we take another step away. 

Our canes and walkers remind us that we have slowed down — and so we take yet another step away, thinking that others wouldn’t want to walk at the back of the lines with us. 

We are invited to lunch with friends but refuse the invitation, believing that we will burden others when we require help with cutting our food. 

Another step. Few become many. We now feel friendless. But are we justified in our belief? Perhaps. But from personal experience, I know that we can force those steps ourselves.

Fighting back

I can say, “I have Parkinson’s, but it doesn’t have me,” but the truth is that sometimes it really does have me.

It’s gotten a hold of my zip, my perk, and my drive. It often gives me “tired” instead. And it takes that thing we call time. 

It takes time to muster up the energy to fight back. But somehow, somewhere deep inside, I find the zip, the perk, and the drive, and I take back the “me” that was missing. I push through another day of having Parkinson’s, but I don’t let it get the best of me.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Happy Trails While Hiking Your Parkinson’s Mountain

trails

As a person with Parkinson’s, do you think hiking is a viable exercise option? If your answer is a resounding “No!” you are not alone. If someone had told me in the past that I would take up hiking, I would have had a similar response. However, keep an open mind, and you may surprise yourself and those around you. Granted, hiking up Mount Everest is probably not your first choice, but there are other mountains you can climb and trails you can explore.

So, how does someone with the Parkinson’s symptoms of poor balance and a shuffling gait accomplish such a daunting task? The answer is one step at a time using trekking poles. These poles take some time to master, but it’s worth the effort to learn to optimize their benefits. Trekking poles encourage big and coordinated movements. They require the use of both arms, forcing one side of your body to work when it would prefer to be sitting on the sidelines. Your arms and legs work as a team, and each member must participate.

Hiking is not compulsory. As a person with young-onset Parkinson’s, I have many tools in my Parkinson’s toolbox, and I am continually looking for others. My trekking poles are one of my best tools, and I use them often. They are fantastic when I need a little extra help with balance. Besides, they look cool and are relatively affordable. Of course, fancy and expensive poles are available, but they’re not necessary — the only requirement is rubber feet.

A bonus of using trekking poles is they help to improve your posture. You might even become a little taller because rather than leaning forward, you’re standing up straight. With better posture comes improved balance and gait, and, most importantly, confidence. I have also seen others use poles to help with freezing by shifting their weight and using the feet of the poles as targets.

Start small, be smart, and most of all, stay safe. A gentle stroll around your house or along the sidewalk is an excellent way to begin. Once you are comfortable, try a local park or shopping mall. Before you know it, you will be on your way to bigger, better “mountains,’ and a more confident you. Happy trails!

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

The post Happy Trails While Hiking Your Parkinson’s Mountain appeared first on Parkinson’s News Today.

Young-onset Patients, Like This 34-Year-Old Mom, Focus of Parkinson’s Foundation and Awareness Month

Korines family

Christina Korines was 22 — a recent college graduate and a newly minted Spanish teacher — when she noticed a tremor in her right foot. That tremor soon progressed into a pronounced limp, and an arm that didn’t swing when she walked.

Something was terribly wrong, she just didn’t know what. Neither did her doctors.

”It was exhausting. It was like my leg wouldn’t listen to my body,” Korines told Parkinson’s News Today by phone from River Vale, New Jersey. “It was like something had sliced me right down the middle.”

Her heart told her it was multiple sclerosis, but that illness was ruled out. One specialist fingered essential tremor; another, generalized anxiety disorder. Still another misdiagnosed her with Huntington’s disease. Next, it was Wilson’s disease.

“My husband said ‘let’s keep looking,’” said the mother of two girls, ages 3 and 7. “So I kept fighting.”

She also kept teaching. But her handwriting had become so small, it was nearly illegible for her students. Her voice turned softer and quieter. She made excuses to avoid walking in her middle-school classroom, and even enlisted the help of an aide.

Still, not knowing what was happening was the most frustrating thing.

One doctor off-handedly broached Parkinson’s disease (PD), but dismissed the prospect because of her age, and she had no known family history of the disorder. But the seed had been planted.

One fateful day in late 2017, she went online and looked up Parkinson’s. Soon, she had an appointment with a movement specialist at NYU Langone Health. What came next was a minor miracle: after 10 years, five neurologists, four MRIs, and seemingly rivers of drawn blood, she finally had a diagnosis: young-onset Parkinson’s disease.

Young-onset PD, relatively rare

“I was totally shocked, but in the most weird way relieved,” said Korines, who immediately began treatment, and quickly noticed improvement. “I feel like that was the start of the rest of my life that day. I knew that I could take control as much as I could, and make a game plan.”

The average age for Parkinson’s onset is typically 60. Only around 4 percent of patients are diagnosed before age 50; the disease is considered young-onset in people diagnosed before the age of 40. And while the youngest known Parkinson’s patient was diagnosed at 12, Korines has yet to meet a patient under age 72. In her online social media groups, she has come to know a few 40-year-olds.

Korines
Christina Korines, a young-onset PD patient, and her family. (Photo courtesy of Christina Korines)

After she was diagnosed and subsequently retired, her husband — a law enforcement sergeant and her high-school sweetheart — persuaded her to sell their house and move with the family to her parents’ home. He wanted to make sure she’d be looked after while he worked.

These days, Korines, 34, is mostly doing OK. While she had no athletic proclivity prior to PD, she’s now totally into non-contact boxing to help manage symptoms.

“When you hit those mitts, the wires aren’t crossed anymore,” she said. “When I walk out, you wouldn’t even know I was sick.”

She does have symptom flair-ups each month, although her tremors are controlled. She tries to lay down during “off periods,” when her medications are wearing off and it’s not yet time for a new dose. Korines also regularly deals with dystonia — repetitive muscle cramping — in one of her feet.

She has problems with comprehension when trying to multitask, she said. But it’s anxiety that really gets her down. Along with depression, the condition is caused in some patients by chemical changes in the brain.

“I’d take any amount more of the physical pain than a second of the anxiety, because of how crippling it is,” Korines said. “It’s ridiculous, it’s absurd, but it’s there.”

Foundation takes the lead

Korines has found fellowship in the Parkinson’s Foundation, which aims to make life better for people with PD by improving care and advancing research toward a cure. Her story, along with other patient narratives, is featured on the organization’s website.

”When you’re so young with Parkinson’s you feel a little lost, but they provided me with support, and just really embraced me,” she said.

John L. Lehr has been the nonprofit’s president and CEO for just over two years.  The organization is gearing up for April, Parkinson’s Awareness Month. Toolkits and PD community tips are

John Lehr
John Lehr (Photo courtesy of Parkinson’s Foundation)

ready, as are opportunities for patients to share, via videos and photos, inspirational tips and messages. Highlighting the importance of disease awareness, the theme for this year is #KeyToPD.

Some 1 million Americans are thought to have Parkinson’s; Lehr expects that number to reach up to 1.2 million within 10 years. About 10 million people have PD worldwide, he said in a phone interview.

The hiring of Lehr, who has more than two decades of nonprofit fundraising and management experience, followed the merger of two legacy organizations: the National Parkinson Foundation and the Parkinson’s Disease Foundation. On his watch, the newly formed, 100-employee Parkinson’s Foundation has enhanced programming and seen revenue rise by 40 percent.

”What’s so important is the reinvestment in mission programs,” Lehr said. “You always want to do right by the community. It’s a very idiosyncratic disease — no two people have the same course — so we want to make sure it’s not one-size-fits-all.”

About 60,000 new Parkinson’s cases appear annually, he said, much of that owing to better diagnostics. To help address this, the foundation will launch a “newly diagnosed” initiative during April focusing on its 45 Centers of Excellence around the world, including 31 U.S. centers. Beyond setting standards globally, the centers provide expert care to more than 145,000 people.

“It’s going to be a full-court press, including with social media,” he said. “We want engagement early and often.”

The importance of exercise

Lehr said patients with young-onset PD, like Korines, are looking at many years of coping because of the disease’s progressive nature. Those diagnosed in their 60s can live several decades and longer, he said, if they’re proactive.

Still, major science hurdles abound.

“The last 20 to 30 years, we’ve learned a lot,” he said. “But there’s no real therapy, let alone a cure. We don’t know what causes it — genetics, the environment, or some combination. Answers to those big questions will prevent, slow, or even halt the disease.”

One of the foundation’s biggest efforts is its Genetics Initiative, dedicated to using genes to uncover mechanisms responsible for hindering or stopping the disease’s progression. Announced last year, it’s the first national Parkinson’s study to offer free genetic testing plus counseling for Parkinson’s-related genes, including the GBA and LRRK2 mutations.

Its goal is to track the genetic makeup of 15,000 PD patients across 50 U.S. sites within a year, with the first patients expected to be enrolled at six sites in April.

The pilot is an expansion of the Foundation’s ongoing 10-year-old Parkinson’s Outcomes Project. With more than 12,000 participants in five countries, it’s the largest clinical study of PD to date, and acts to help patients better manage their disease and receive better care. It also tracks and reports on research findings, and expects that those enrolled might be more interested in participating in clinical trials.

Along with its array of patient and caregiver support and fundraising efforts, the Parkinson’s Foundation has been busy on other fronts, recently hosting its first medical marijuana and Parkinson’s conference, and creating its first patient-centered research agenda for women.

The most significant Parkinson’s development during his tenure so far, Lehr said, has not been drug or even diagnostic discovery, but rather the heightened awareness of exercise.

“There will always be advancements in therapeutics,” he said. “But the importance of staying active — be it walking, boxing, dancing — and how it functions as good as a drug, has been the biggest news.”

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