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Rewiring the Brain: Taking a Fresh Look at Chronic Pain

exercise, chemical hazards, coping skills, frustration, relationships, things, what ifs, shut in, toilet paper, serenity, laughter

For 15 years, I have been a failure at managing my chronic pain. I was prescribed oxycodone with gabapentin, and after my Parkinson’s diagnosis, I was put on levodopa. This decreased my pain to the point where oxycodone was no longer needed.

I also tried alcohol and marijuana in a rigorous attempt to make the pain vanish, replacing it with “feel-goods.” I know that chasing after “feel-goods” is not the right approach for me, so I stopped all the pain medications except levodopa.

At this juncture, I wish to be clear that I am not recommending anyone stop their medications. This is my personal journey, and I made decisions in consultation with my healthcare providers. For me, the risk of opioid treatment far outweighed the benefits.

Gabapentin in my system dulled my brain to the point that my cognitive abilities (or lack thereof) adversely affected my quality of life. Only in the last few months have all the pieces finally fallen into place to reveal a fresh approach to chronic pain management.

Chronic pain management is not just about popping a pill and hoping to be pain-free. No matter what I do, I will always have chronic pain from Parkinson’s every day. The goal is to live better. Medications that seek to disguise this reality within the gaudy attire of society’s “feel-good” addictions always send up big, red warning flags for me.

The brain has a remarkable ability to rewire itself so it can function better, even with chronic pain. If I am putting chemicals in my brain or using a set of addictive thoughts or feelings that interfere with that rehabilitative rewiring, then I must change or give up. Giving up and showing up are just a breath and a step apart.

The Parkinson’s chronic pain management program I use incorporates many of these small changes to help me live better. Here is my list:

This list reflects some of the information available to the public on chronic pain management. Each small change supports a small increase in the space between chronic pain and the thought or feeling in reaction to that pain. Each small change strengthens the stability of the pause.

With a long enough pause, it is possible to call on the conductor, who can then reroute the brain’s response to pain and surges of exaggerated mood (SEM) attacks. Once the conductor is called upon, one can discover something more — a fresh new look at chronic pain management.

The old ways of coping with pain were not working because SEM attacks were causing an exaggeration of the pain signal and emotions. In our search to live better with this, we discovered a new exercise approach, and along the way, a few gems of wisdom, including:

  • Intense emotional experiences can exacerbate chronic pain.
  • Uncontrolled actions connected to intense emotional experiences can also increase pain.
  • Skilled meditators experience intense emotions differently than the average person.
  • People with highly skilled conductors will experience intense emotion differently. Seeing the intense emotional experiences, along with pain, from the viewpoint of the conductor is not the same as the original emotional/pain experience.
  • Marijuana used in a sacred way can help to hold open the viewing window for the conductor.

With patience and perseverance, I sat at the conductor’s viewing window every day for more than four months. Many of the discoveries from this view are chronicled in my columns.

Connected to SEM attacks is the idea of anxiety or sad emotion surges that are not tied to context. Many of the emotional surges were purely abnormal Parkinson’s biochemicals with no environmental or conscious antecedent — just a surge of emotion due to brain chemistry.

Given this to be true, and my history using a well-trained conductor, I passionately believed a new brain path would be found. At the time, I was just using the conductor’s window to find a way to tone down the SEM attacks. What I discovered was a lot more, and yet so simple.

The need to fight, flee, or act in a way to seek nurturing is an automatic, often instinctual response to pain signals. If those pain signals are exaggerated, the response can be, too. In my case, it is all based on illusion caused by an organic malfunction. There is no external threat that requires a fight/flight/nurture-seeking response. As Neo said in “The Matrix” sci-fi movie, “There is no spoon.”

This perception of the difference between a thought/feeling and an observed thought/feeling isn’t just an idea for me, but rather an experienced phenomenon connected to the vision of a better life. At the conductor’s window, I sat and watched the exaggerated illusionary signal, I watched the pain and emotions approach, and I saw them redirected down a new track leaving no consequence visible to others. I felt no fanfare, no bliss, no awe. Just a soft, everyday calmness and a sense that I can do this conductor rerouting.

In a prominent place in the home, I put up a calendar to document success. At the end of each day, I share with a family member the placing of a big, red check mark for every day the conductor successfully reroutes the reaction to pain and SEM attacks.

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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 Rewiring the Brain: Taking a Fresh Look at Chronic Pain appeared first on Parkinson’s News Today.

Staying Safe in Summer’s Sunshine

soft voice, wish, fires, silent symptoms, marriage, tasks, bucket lists, forgetfulness

Summer is here in the U.S., bringing with it humidity and heat. So, in the midst of the stickiness, sweatiness, and eventually, the ripened smelliness, we might ask ourselves, “Should I stop drinking water and dehydrate myself so that I stop sweating, thereby skipping the stinking?”

Uh, not recommended. 

Dehydration adds to problems already in the brain of a person with Parkinson’s disease. Since we already have enough problems with our brains, why create more? 

When we are dehydrated, our brain cells don’t function properly, which leads to cognitive issues. Dehydration, even if slight, causes our brains to work harder at whatever mental or physical tasks we may find ourselves involved in.

Just last year, I experienced my first (and hopefully last) heatstroke. Thankfully, my neighbor is a nurse and recognized what was happening, and helped me out.

With the onslaught of summer’s heat, it’s important to follow some simple, healthy guidelines while basking or working in the summer sunshine.

It may seem elementary, but staying hydrated is the best way to stave off getting overheated, and water is the best choice for that. 

Adding a lemon or lime wedge to your water is helpful for those who don’t care for “plain” water or who have a hard time tolerating it. A lemon also can help you drink more water than you normally do because it tends to make you thirstier.

Wear light-colored and loose clothing when working out in the garden. Do your outside chores in the morning or in the evening when it is cooler.

Know the signs of heatstroke. According to the Mayo Clinic, they include a flushed face, high body temperature, headache, nausea, rapid pulse, dizziness, and confusion. 

You may not mind sweating or being sticky. You may not even mind being stinky. But becoming sickly because you allowed yourself to become dehydrated on a hot summer day isn’t worth the risk.

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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 Staying Safe in Summer’s Sunshine appeared first on Parkinson’s News Today.

My Parkinson’s Treatment Conundrum

I was diagnosed with Parkinson’s disease in November 2015. Since then, I have explored both allopathic and naturopathic solutions.

From a naturopathic perspective, I immersed myself in Parkinson’s disease summer school, which dedicates a week to strategies to improve Parkinson’s outcomes. I also consult with a naturopathic doctor every few months. From a traditional medicine perspective, I consulted with 11 neurologists, seven of whom were movement disorder specialists.

To find the right treatment therapy for me, I have done the following:

  • Consulted with general neurologists, movement disorder specialists, and a naturopathic doctor
  • Educated myself with online courses and webinars
  • Conducted online research
  • Joined Facebook groups focused on Parkinson’s disease

I have finally concluded that no single treatment solution is for everyone. We all have unique and distinctive symptoms and different metabolism. I have traveled a rocky road over the past few years trying various medications and therapies for symptom relief.

My allopathy vs. naturopathy conundrum

As much as I am resistant to the idea of taking medications, I have learned to accept that I must take them to allow me to work out. My goal has always been to use exercise to ease my symptoms and slow disease progression.

The neurologists and the naturopathic doctor I consulted agree that exercise is one of the most important therapies for treating Parkinson’s.

Allopathic and naturopathic doctors sometimes have different opinions about using supplements and prescription drugs. My naturopathic doctor (ND) believes supplements can enhance the impact of prescription drugs. Also, she believes they might allow for the possibility of lower dosages of medications.

One of the movement disorder specialists (MDS) I visited did not approve of most of the supplements the ND recommended. He indicated there were no large-scale trials conducted that confirmed or denied how the supplements might interfere with the drugs or other body functions.

I respect the opinions of both the MDS and the ND and work closely with both of them to come up with a treatment plan we all can agree to.

The beauty is in the balance

I now realize that symptom relief is not achieved with an all or nothing scenario.

After much trial and error, I have come up with a combined naturopathic and allopathic approach that works for me. This solution allows me to accept and adjust to my “new normal” with no side effects and some symptom relief. This is the list that works for me and may not be appropriate for you. Always consult your doctors before making any changes to your health regimen.

My list includes:

  • Frequent exercise
  • Eating a plant-based diet
  • Massage
  • Physical and speech therapy
  • Carbidopa/levodopa
  • Neupro
  • Selegiline
  • Vitamins B12, C, and D3 (based on blood test deficiencies)
  • Fish oil
  • CoQ10
  • Glutathione
  • Infrared light therapy

My way of thinking may have hindered my progress to reach this point. After all the therapies I had done, I expected to feel like I did before I was diagnosed. Because I have a disease of the brain, that is unlikely to happen. Plus, as one ages (I am five years older now than I was when diagnosed), sometimes it is difficult to determine if a symptom (balance, slow movement, cognitive issues) is age-related or caused or accelerated by Parkinson’s disease.

Of course, this current regimen will need tweaking as time goes by. Dosages may have to be increased, not because the drugs lose their efficacy, but because Parkinson’s is a progressive disease.

My conclusion

As a person with Parkinson’s, the ball is in my court to find the right solution for me. Because we all have a different manifestation of the disease, everyone with Parkinson’s must find their unique treatment plan. It helps to arm ourselves with knowledge about our condition. We should not be afraid to challenge our treatment professionals. After all, we have the most experience in knowing how Parkinson’s affects our bodies.

“The conflict between preventive health and conventional medicine is not an either-or situation. For example, we will always need emergency rooms and people will always require health care services; yet it has become clear to me that the approach must be natural, it must be preventative, and must be individual.” – James L. D’Adamo

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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 My Parkinson’s Treatment Conundrum appeared first on Parkinson’s News Today.

What We Wish We Had Known

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

There is a question circulating once again in the Parkinson’s forums and Facebook groups. “What do you wish you had known when you were first diagnosed with Parkinson’s disease?” This cycle of inquiry seems to repeat itself about once every six months. 

It’s almost like, by asking that question, we hope to find a hidden treasure we weren’t told about at the onset of our diagnosis. Some hidden gem will unearth itself that we somehow missed. It’s as if we are looking for some sort of magic needed to skim over the hard stuff. Something that will enable us to press on as if we were superhuman in the face of our disease. But, we aren’t superhuman. I know that personally.

There isn’t any one answer that will be “it” to our question of what we wish we had known. There isn’t one answer that will fulfill the longing for the secret to making the acceptance of our diagnosis easier. Depending on where you are in your journey with Parkinson’s, there could be several answers.

What would your answer be to the question above? Here are some inquiries made by those who answered that question:

Denial won’t make it go away. Choosing not to accept the truth or even admit it into your consciousness doesn’t mean you nullify its existence. Viktor Frankl wrote, “When we are no longer able to change a situation, we are challenged to change ourselves.” When we can no longer change the fact we have Parkinson’s disease, we begin to live at a new level. 

Our future does not rest on the diagnosis we get, but on how we respond to that diagnosis. It’s not a worse life. It’s different. Learn to accept it and get on with living because there’s lots left to do and to live for.

Many people wish they were told about things they could do to slow the progression, such as exercise. It’s hard to recommend treatment when you’re not sure what you’re treating, as is often the case when trying to diagnose Parkinson’s. The exercise phenomena in Parkinson’s is pretty new. According to recent studies, exercise is said to be hailed as the new medicine in Parkinson’s disease.

When I was diagnosed in 2004, exercise wasn’t often brought up. The ideas of boxing, dance, tai chi, and more were pretty new in terms of their benefits for Parkinson’s disease.

Sometimes I have wondered if exercise was downplayed because the disease was predominant in older people. However, with the rise of young-onset Parkinson’s disease, younger people may not be as feeble or afraid to try something more strenuous than chair exercises. 

We have come through a period of Parkinson’s history that relied heavily on medications to treat the disease. Now we’re finding that exercise makes a bigger difference than a handful of pills. And though we may wonder why we didn’t know or start exercising sooner, it’s never too late.

It is not uncommon to grieve over this disease. We have lost a lot. Parkinson’s can steal our identity and independence, and ruin our relationships. For those who’ve been through the grief process of Parkinson’s — it’s normal. And just because you’ve grieved once doesn’t mean it won’t surface again. With every new symptom that surfaces, you might experience something. Or, you may experience nothing. Everyone is different.

Don’t let your diagnosis keep you from those things you love to do, such as dancing, as this clip shows. Some of us may appear or feel awkward in our movements, but often those awkward movements disappear for a bit while dancing, exercising, and more.

Finally, what we should remember, Parkinson’s or not, is that laughter is the best medicine. Keep or get a sense of humor. Laugh at yourself. Laugh out loud. Just laugh. It does a body good. Isn’t that what we’re striving for anyhow?

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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 What We Wish We Had Known appeared first on Parkinson’s News Today.

Learning to Live Simply With Parkinson’s Disease

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

A sign hangs above my desk with only one word on it: “Simplify.”

The sign isn’t fancy by any means. But it does make me stop to ponder what that small word means to me. And it must have made an impression for me to fork out $3 to buy it. 

It may seem elementary, but somewhere in its simplistic message, a great freedom can be found. This type of freedom whispers to our heavy hearts to let go, to simplify, to take what seems complicated and make it simple. But is that possible with Parkinson’s disease?

Parkinson’s is complicated, there’s no doubt about that. It’s a tough illness, as are so many others. Because it’s tough, it’s important to make our journey with it as simple as possible. We simplify by letting go of things, and sometimes people.

I recently read somewhere (I can’t remember where) that Parkinson’s is the “big litmus test” of the people meant to stay in our lives. I would add, “And the people we need to let go.”

Just as things in our life can drag us down, so can people. Family, friends, acquaintances all have the capacity to hurt us, and unfortunately, they will (and vice versa).

We can start simplifying our lives by forgiving and then letting go. Make a stand for newfound freedom by not allowing the past to rob you of the good days you have left. Clear the clutter from your emotional life and move on.

The places that make you anxious are the places that may need simplification. As our emotional and mental lives become cluttered and need simplifying, so can our material lives. When we leave our homes cluttered and filled with stuff, it can affect us mentally. 

I remember years ago a friend told me her husband “got it.” After coming home and finding her in tears after a long day with three little ones, he started cleaning up the kitchen. She asked him what he was doing. 

“When the house is a mess, you’re a mess,” he responded.

He did get it. Wise man.

As this disease progresses, my memory seems to forget things I wish to remember. So, I make lists to lighten the anxiety I often feel when I forget something.

I have daily and weekly lists. My daily list includes when to take medications, and it makes time for exercise. It has a time slot for reading,  journaling, household duties, and phone calls I need to make. Distraction can be part of the disease, so having even the simplest of lists makes this disease more manageable. 

We can bring simplicity into our lives in many ways, but this about sums it up: Live simply so that you may simply live.

In other words, simplify!

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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 Learning to Live Simply With Parkinson’s Disease appeared first on Parkinson’s News Today.

Stumbling Blocks or Stepping Stones?

obstacles, personal trainer, guilt, Q&A

A few weeks ago, I impulsively purchased a book of “Joy Notes” at a restaurant gift shop. The purpose of the book is to tear out the notes and share them with someone who needs them.

Here is one I am sharing with all of you:

“God turns stumbling blocks into stepping stones. The only question is when.”

Life is full of obstacles, especially for those of us with a chronic and sometimes invisible illness. Each day brings its own set of challenges and its share of stumbling blocks. Many of them are quite literal rather than metaphoric. Our balance is compromised and we have tremors that hinder our ability to control our body and its movements. Metaphorically speaking, some non-motor symptoms are not stumbling blocks — they are walls.

How do we use the stumbling blocks?

Do the stumbling blocks become the stepping stones that go over the wall? Or do they make a path around the wall? Maybe a little bit of both. Sometimes one way is not always the best way — a combination of twists and turns with ups and downs is the way to go. With Parkinson’s, we are creative every day because sometimes our body works and other times it simply says, “Nope.”

Finding a way to manage our body’s rebellion is the challenge. Set small and achievable goals for yourself throughout the day. The keyword is “achievable.” Set yourself up for success rather than failure. You may not be able to hop out of bed and be ready to face your day the way you did before Parkinson’s. However, you can get out of bed five minutes early, roll onto the floor, and stretch to aid your body in its attempt to get moving. Goal set and accomplished. Your day is off to a great start. Your stumbling block of rigidity just became a stepping stone to exercise and starting your day.

Ultimately, it doesn’t matter. We just need to get past the wall one day and one block at a time. Everyone may have a different path. No two journeys will look the same. Our journeys are uniquely our own, but our destination is the same — what lies on the horizon.

The horizon does not have to be a grand event in the future. The horizon can simply be turning your cell phone off, relaxing, and having a restful sleep.

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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 Stumbling Blocks or Stepping Stones? appeared first on Parkinson’s News Today.

Finding a Community Through Forum Participation

podcasts

The Parkinson’s News Today Forums are designed to create a safe environment for those impacted by the disease. Whether we are discussing our lifestyles or looking for ways to connect, technology offers new platforms to help us explore our uncertainty.

Caregivers, physicians, and patients alike have the opportunity to see Parkinson’s disease from other people’s perspectives while discussing nuanced topics in a virtual location. And other people provide a tremendous amount of insight into the disease.

But finding a community, even a virtual one, gives us those feel-good chemicals for a reason.

The importance of community

It’s commonly accepted that humans are community-driven creatures. Our early primates existed in troops because traveling in groups offered a defense mechanism against predators. It’s also a tactic commonly used to defend scarce resources like food or territory.

Today, while humans are adapting to advances in technology, many of us are changing the way we interact with our communities. Forums offer a type of connection or discussion that’s akin to socialization that has occurred in our species for centuries. Humans are inherently tribal. Finding solace and safety in others is an evolutionary strategy, and the significance of these tactics is still relevant today.

Building a community in an educational environment has been shown to heighten success rates among students. This is why scientists peer review papers and challenge their comrades to perform at an elite level. And the same logic can be applied among those seeking answers about an illness like Parkinson’s disease. What we are capable of achieving together is far greater than what we can achieve by ourselves.

Joining forums as a moderator

Last year, I was lucky enough to join the Parkinson’s News Today Forums as a moderator. My dad was diagnosed with the disease in 2013, and I’ve been eager to reach a greater depth of understanding through literature and conversation. The Parkinson’s forums provide inquiries and exploration in a way that no other resources do.

For instance, over the past few months, firefighters with Parkinson’s have joined the forums to discuss the relationship between the disease and their occupation. A recent discussion explored the parallels between environmental toxins and neurological disorders. And the forums allow us to receive input from people who are situated across the globe.

As a moderator, I’m intrigued by the ideas that arise on a daily basis. I’ve been asking myself questions like: What are commonalities between Parkinson’s patients that aren’t widely accepted by science yet? Is managing medication the same for everyone? How does having a virtual community that’s zeroed in on Parkinson’s impact others? And how might we be able to use virtual connections to broaden our understanding of Parkinson’s?

Dad’s forum experience

After a few months of being a moderator, I was pleasantly surprised to observe my dad beginning to participate in discussions. As a quiet soul, he seldom complains about the pitfalls of his degenerative disease. But his spirits seem to rise when he remembers that he’s not alone.

Anyone who’s navigated the treacherous waters of a disease understands what it’s like to feel alone in your experience. But using our resources to bridge the gap between ourselves and those who understand creates a greater sense of support and well-being.

Dad is beginning to find this community while he’s using newfound idle time on the internet. I’m excited to hear his ideas bouncing off the walls of our forums. His curiosity is piqued in new ways. As a concerned daughter, I’m over the moon to see him braving new territory. For a senior like him, technology can create intimidating barriers. Yet he strives to learn on a daily basis.

We look forward to seeing you at the Parkinson’s News Today Forums

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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 Finding a Community Through Forum Participation appeared first on Parkinson’s News Today.

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.

The post No Matter Your Age, We’re in This Together appeared first on Parkinson’s News Today.

Rethinking Exercise With Parkinson’s

exercise, chemical hazards, coping skills, frustration, relationships, things, what ifs, shut in, toilet paper, serenity, laughter

I hate facing the effort it takes to start daily exercise. I hate the way I feel the next day — like I have been pummeled with nunchuks. But ever since my Marine Corps training I have enjoyed the benefits of exercise. I know it is hard to get up and engage in physical activity. This is particularly true when facing the motor hesitation of Parkinson’s. It is hard to exercise facing the level of discomfort that is going to follow. This is particularly true when the post-exercise stiffness is compounded by the rigidity associated with Parkinson’s. Yet, despite these difficulties, the benefits of exercise far exceed the temporary increase in discomfort.

Starting exercise after being sedentary combined with neuromuscular malfunctions requires special considerations. The Marine Corps boot camp approach just is not going to work. Last time I tried that I ended up with multiple muscle injuries. A new approach to exercise came from three ideas: mindful movements, little things practice, and long movements adapted from Lee Silverman Voice Treatment (LSVT) exercise recommendations.

In the study “Effect of Exercise on Motor and Nonmotor Symptoms of Parkinson’s Disease,” the authors report that “LSVT BIG therapy is designed to overcome amplitude deficits associated with PD. This therapy improves proprioception through increasing amplitude together with sustained attention and cognitive involvement by mentally focusing on individual movements.” In other words, I am concentrating on where my body is and what it is doing, and I’m paying attention by focusing on the task at hand.

My new exercise program incorporates activities that focus on long and slow movements while I’m simultaneously engaged in a mindful focus on the little things. This new exercise program is also tied to something that will continually motivate me to move past the Parkinson’s hesitation to start. I discovered, in some ways rediscovered, the answer with landscape gardening.

What is great about landscape gardening is that there are so many different types of motor tasks that need to be accomplished: shoveling, hauling with a wheelbarrow, planting, raking, clipping, and pruning. Knowing that I need more light physical activity for both warming up and for bad days, where I can only put in short durations, I am installing a white gravel Zen path. The small gravel pieces, less than an inch in diameter, are incredibly easy to rake with long mindful movements. Light and easy warm-up exercise has become mandatory for me before any physical activity. The one day I forgot resulted in strained muscles that required too much time to heal. The good thing is I now know what strained muscle pain feels like and how it is different from Parkinson’s muscle pain and different from post-exercise pain. I now know why the light warm-up exercise in a mindful state needs to happen before I tackle the larger landscape gardening projects.

Getting back into exercise after being sedentary for so long requires patience — lots and lots of patience. I see so many things in my vision for our yard. But I know if I push myself in that old boot camp way I am going to end up injured and unable to accomplish my vision. But patience means slowing down and slowing down feels like I am not accomplishing “great” things. If I think I am not accomplishing then I am not successful, and if I cannot be successful, then I feel no need starting at all. It is a devious cycle that ignores the practice of “little things” and becomes a reason to not exercise. Mindful, light motor exercise activities break that cycle. Like Tai Chi and yoga, the long, mindful movements help motivate me out of sedentary life and into a balanced exercise regime.

Gardening is also good for the mind and what is good for the mind is good for the body. My approach to gardening is different now. My first impression of the change is that my actions are calmer, framed in sacred intent. But, in all honesty, I am still sorting all that out. Using this new approach to exercise, while being creative with landscape gardening, is making a huge difference in my health. We just did a teleconference with my new primary provider and Mrs. Dr. C said, “He’s the healthiest he’s been in four years.”

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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 Rethinking Exercise With Parkinson’s appeared first on Parkinson’s News Today.

Going Through the Fires of Parkinson’s … and Blooming

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

In the same way a wildfire can take your breath away, so can a flower. Especially if it’s standing amid charred, blackened earth. Once there stood tall majestic black oaks, madrone, manzanita, and pine trees. Now there remains only ghostly profiles of those trees, their leaves and bark burned bare.

My husband and I were driving back to southern Oregon after visiting my in-laws in California. We passed through several areas where recent wildfires had claimed the rights to dry vegetation. Pine trees stood out like tall, black charcoal pencils, their tips pointed upward. 

As we drove through the wasteland, which seemed void of any life, I began to notice something. Small areas of yellow mixed with orange sat scattered on the hillside. Clumps of pretty flowers stood out demanding attention.

Upon returning home, I looked for information on the flower I saw. I didn’t find that one, but I did find information on another flower called the fire poppy. 

The fire poppy, considered by some to be the most vibrant of all wildflowers, emerges only after a wildfire. The seeds have been dormant in the ground, waiting for the right conditions to pop through scorched soil. The seeds can lie in wait for decades before fires prompt them to start the growing process. 

So, what are the growing conditions that cause these flowers to come alive? They are much the same as any other seeds, with one exception: they need the elements of a wildfire. 

It sounds crazy, but if you think about it, it’s not so crazy. Some of the most captivating things, like gold, must go through a purification/refining process by fire to stand out from the rest.

We who shuffle around day to day with Parkinson’s disease are being refined and purified. A wildfire has swept through our lives in the form of a diagnosis that left us jarred and shaken. We grieve that we may never grow again, dead to all we have ever known. 

Somewhere deep within the hallowed ground of our spirit, tiny seeds await. They are ready to sprout and push through the crusty, ashen earth. The wildfire has passed. The rains and the sunshine have come. New growth is busy beneath the soil, preparing to make an appearance.

My 5-year-old grandson loves to help me in my garden. He has planted many seeds with me. He gets so excited as he waits with great expectation of what will one day bloom and grow. 

It reminds me of the fire poppies. They don’t bloom until they have been through the fire. And when they do bloom, they will be beautiful and stand out. 

Just like you. 

You, who have been through the scorching of Parkinson’s fires. You, who have come through more beautiful than ever. 

Making beauty out of ashes. That’s what wildfires can do.

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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 Going Through the Fires of Parkinson’s … and Blooming appeared first on Parkinson’s News Today.