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Tips to Stay Fit During Coronavirus Isolation

CBD

If you’re in the same boat as my dad, chances are that your gym is on lockdown. Dad was disappointed to hear that Rock Steady Boxing (RSB) is pausing operations during the global coronavirus pandemic. But he also recognized that it’s the safest move.

This global quarantine is really shaking up our routines, which can feel frustrating. But one of the beautiful consequences of the pandemic is that huge steps are being taken to adapt. In light of current events, fitness instructors are starting to offer free classes for those looking to stay fit at home. It seems as though fitness classes are becoming even more accessible than they were before.

If you’re lucky enough to have an internet connection and a space in your home to work out, there’s no reason to let your fitness go. You can follow along with a number of fitness videos or write down the routine and do it on your own. Some videos are geared specifically toward Parkinson’s patients, while others are general routines that can help you work up a sweat.

Fitness classes for Parkinson’s

Finding fitness classes that target Parkinson’s symptoms can be really helpful. Focusing on strength and mobility can help to keep symptoms at bay. Luckily, a number of organizations recognize this.

Rock Steady Boxing

I recently spoke with Sara Roque, Rock Steady Boxing’s affiliate services director. She noted that affiliate coaches might have access to a series of RSB’s virtual courses. If you usually take RSB classes, it’s possible that your coaches have access to virtual videos that are similar to the classes you’re used to. It might be worth asking them about it.

If you’re unable to gain access to RSB videos, a number of organizations offer virtual boxing courses. Many don’t require equipment. Check out these boxing videos from PopSugar Fitness and Fitness Blender if you want to stay fit until the gyms open again. Many of these workouts are designed to target cardiovascular health, which is an important way to stay strong while in isolation.

The Brian Grant Foundation

The Brian Grant Foundation offers a series of online videos geared specifically toward people with Parkinson’s. If you like what you see, you can donate to show support, but it’s not required. The videos address everything from warmups to aerobic agility and vary in length, making it possible to find a routine that targets Parkinson’s specific challenges without leaving your home.

Power for Parkinson’s

Power for Parkinson’s is another organization that makes exercising from home relatively easy. This organization offers videos that range in length from 30 to 60 minutes. Videos target strength, balance, and vocal strengthening, among other things. Most don’t require equipment.

General fitness classes

If you’re looking for fitness classes that don’t necessarily target Parkinson’s, tons of personal trainers and yoga teachers are adapting to fill the virtual fitness space. YouTube is a wonderful resource for free fitness courses for just about anyone. Chances are you’ll find a fitness class that targets the type of workout you’re looking for.

A couple of them that I know include:

Amy Wansing Yoga

Amy Wansing Yoga will be creating virtual yoga classes on YouTube for use during this pandemic. The Colorado-based yoga instructor specializes in strength and has a background in yoga for climbers. But she also provides meditation sessions and positive mantras.

Kari Sullivan Fitness

Kari Sullivan is a Colorado-based personal trainer. She will be providing at-home workouts during the pandemic. Follow her on Instagram (@karisullivanfitness) to find new workouts during the week. She has a background in CrossFit and specializes in strength training. But her workouts offer a variety of exercises and options for people of any age and ability.

Creating new routines takes a lot of time and effort. But it’s possible. Saying committed to our health and well-being will allow us to overcome barriers associated with frustration and change. And technology is creating new ways to connect with people who can hold us accountable to those routines.

Staying active while in quarantine is entirely possible. Maybe we can even get our loved ones to join us!

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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 Tips to Stay Fit During Coronavirus Isolation appeared first on Parkinson’s News Today.

How Your Smartphone Can Help You Manage Parkinson’s

CBD

My dad was a firm believer in his flip phone and knew it would survive if he dropped it from a considerable height. He counted on it to connect him with his real estate clients and get the job done.

After his diagnosis of Parkinson’s disease, my siblings and I realized that voice tools might address his difficulties with texting. Eventually, his cellphone company convinced him to switch to a smartphone. 

My dad has since realized that smartphones can simplify many tasks. He can text his children by speaking into his phone and can ask Google about the weather without navigating the keyboard. Switching to a smartphone opened up new avenues of communication and made it easier for him to access information.

Siri and Google provide convenient ways to perform basic tasks, but resources exist that could further simplify your life. For example, you can track your medications, play cognitive games, and target speech and language skills via various mobile apps. It might even be possible to detect early Parkinson’s symptoms by utilizing certain technology. We’re still discovering new ways to manage Parkinson’s symptoms with technology.

Tracking medications

Mobile apps such as CareZone and Pill Reminder are free ways to track your medication dosage and timing. You can set up reminders that will ping your phone when it’s time to take another pill. Tracking medications in this way could offer a visual representation of your medication journey and depict the speed at which you’re adjusting your dosage. 

Targeting speech and language skills

Apps such as Beats Medical Parkinsons Treat can slow the progression of speech and language symptoms. You also can track your medications with this app. It offers tutorials for mobility, speech, and dexterity, giving you a way to fight Parkinson’s symptoms. 

Improving cognitive function

Puzzles that target cognitive function are a great way to stay sharp late in life. For example, Peak Brain Training features games intended to sharpen memory and vocabulary. You can track your progress over time to monitor changes in brain function. 

Easing anxiety

Regular meditation practice is associated with increased cortical thickness. Apps such as Calm and Headspace offer a way to engage with different meditative practices to ease anxiety and depression. 

Apps designed for Parkinson’s

Some apps are designed specifically for people with Parkinson’s. The Parkinson mPower study app measures tremors, gait, and balance, while Parkinson Home Exercises offers home exercises and movement advice. Learning to interact with these and similar apps can help you combat symptoms of Parkinson’s such as muscle stiffness. 

Living in the era of technology has its perks. Information travels more quickly than ever before, allowing for a global exchange of information. Competition is driving technological progress to an all-time high. Parkinson’s can be difficult to navigate, but different smartphone functions and apps could simplify your life. 

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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 How Your Smartphone Can Help You Manage Parkinson’s appeared first on Parkinson’s News Today.

Could CBD Help to Ease Parkinson’s Symptoms?

CBD

As a Colorado resident, I often wonder about the healing power of plants. We live in a time when the pharmaceutical industry is booming. Pills exist to tame nearly any symptom, but they often can have unwanted side effects. The side effects of plants, however, may be less harsh, or even nonexistent. Cannabidiol (CBD) is a great example of this phenomenon.

What is CBD?

CBD is a compound derived from the cannabis plant and is commonly sold in oils and foods. Depending on the product, CBD could potentially treat pain, anxiety, depression, insomnia, and inflammation, among other issues. Additionally, research suggests that CBD potentially could be useful for other conditions, including improving well-being and quality of life in Parkinson’s disease (PD).

Unlike tetrahydrocannabinol (THC), CBD generally has relaxing effects. Users do not feel “stoned” or intoxicated.

Why is CBD controversial?

The use of CBD is legally gray, as marijuana is illegal at the federal level. However, the 2018 U.S. Farm Bill legalized the use of CBD produced via the cultivation of hemp with THC levels below 0.3 percent.

You also can use a medical marijuana card to obtain CBD in some states. Nevertheless, a few states currently forbid the use of CBD. Check to see if CBD is legal in your state here. 

Because CBD is unregulated at the federal level, it can be difficult to determine the amount of THC in certain products. Purchasing CBD products from reputable brands that conduct third-party testing is currently the safest option.

What might CBD do for Parkies?

CBD has shown potential in early studies for reducing dyskinetic activity in people with PD and treating motor symptoms in various neurodegenerative conditions.

According to a 2018 review study published by the journal Frontiers in Pharmacology, “Cannabidiol is a non-psychotomimetic compound from Cannabis sativa that presents antipsychotic, anxiolytic, anti-inflammatory, and neuroprotective effects.” Data also suggest that CBD could potentially play a protective role in the treatment of certain movement disorders. Results are promising, but further studies are needed to clarify the efficacy of CBD.

Our experience

My dad kept hearing about the potential benefits of CBD. He doesn’t like the sensation of getting high, so he investigated products that would yield similar benefits without the possibility of intoxication. Eventually, he purchased two tinctures that he consumed orally for several weeks. He doesn’t believe the tinctures had a substantial impact on his everyday life, but I’m not ready to let him stop hoping.

Of course, it is important to consult your physician before trying CBD or any other treatment.

Has CBD helped you in any way? Please share in the comments below. 

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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 Could CBD Help to Ease Parkinson’s Symptoms? appeared first on Parkinson’s News Today.

Here’s Why You Should Consider Getting a Dog

dog

I’m notorious for attempting to convince everyone in my life to get a dog. I love the furry animals, but I often travel or am in places that aren’t particularly dog-friendly. So my latest mission is to convince my dad to get a dog.

Could having a well-trained dog, such as a service dog or an emotional support dog, benefit someone who has Parkinson’s disease? 

Parkinson’s disease and dogs

For someone with Parkinson’s disease, service dogs have been shown to help their owner with challenges like maintaining balance. About 38 percent of people with Parkinson’s disease fall at least once a year, so balance might be one of the disease’s bigger threats. The right service dog could assist its owner in maintaining balance and alerting someone if the owner falls. 

Dogs also can help with freezing episodes by nudging or encouraging their owner to move forward.

While it might not seem intuitive to add another living being to your household, service dogs are trained to perform tasks that their owners might be unable to perform. When properly trained, dogs can turn off the lights, open doors, and carry small items. 

Additionally, many Parkinson’s patients experience depression and anxiety. Dogs can have a positive influence on some of these symptoms. Having a dog around your home can help to combat feelings of isolation while increasing overall health and well-being.

But what type of dog is best for you?

Service dogs

Service dogs are seen as an extension of their human. They are trained to perform tasks that their owner might be unable to perform. 

What you need to know about service dogs:

  • Service dogs can go anywhere their humans go.
  • They aren’t legally obliged to wear a vest, patch, or other identification.
  • They don’t need to be professionally trained to be considered service dogs.
  • Hotels and landlords can’t charge you additional fees for having a service dog.
  • Service dogs come in any shape or breed.

If you’re a dog lover, you might find it useful to know that service dogs don’t always have to be on duty. Sometimes they’re allowed to kick back and be their puppy selves. 

Emotional support dogs

Emotional support dogs essentially are a legal step down from service dogs. They’re intended as therapeutic animals, not to help you perform tasks. You won’t have as much legal flexibility with a support dog as you would with a service dog. For instance, national parks in the U.S. aren’t pet friendly. But because service dogs are seen as an extension of their humans, they are legally allowed. Emotional support dogs wouldn’t be. 

While finding housing, landlords are allowed to ask if you have a disability and if your dog assists with your disability. They’re required to allow you to live with your emotional support dog or another animal regardless of their stance on pet ownership. 

Companionship

I know that dog ownership involves many important factors. They can be expensive. You want them to have a good, active life and a nice yard. Sometimes, the thought of a young dog can feel overwhelming because they require so much attention. 

But adding a reliable companion to your life might make a bigger difference than you realize. (Hi, Dad. Get a dog!) Not only do dogs have a grounding effect on their loved ones, they’re also capable of offering a tremendous amount of support in terms of the tasks they can perform. 

Do you have a service or emotional support dog? What benefits have you encountered? Please share in the comments below.

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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 Here’s Why You Should Consider Getting a Dog appeared first on Parkinson’s News Today.

A Rock Steady Boxing Party Showed Me a Community that Cares

community

Christmas hung in the air, smelling faintly of cheese platters and wine. Dad and I had decided to attend a Rock Steady Boxing Christmas party. On the way over, he joked that it would “be a quick Christmas party because everyone’s drugs [would] wear off in a few hours.”

His attitude amazed me, as always. He isn’t one to complain. He’s much more likely to count his blessings and to be excited about the prospect of introducing me to his friends. 

We arrived early and watched green tablecloths making waves in the air while being molded onto the table. I wasn’t sure what was stirring in my dad, but I got the sense that he liked being among people who understood him. No one asked him why he didn’t intend to stay for more than two hours. If he couldn’t eat right away, it was quietly understood that he was timing his medications. And no one batted an eye if he suddenly found himself stuck to the ground. 

The power of community

Seeing my dad interact with the Rock Steady Boxing community surprised me. He had withdrawn from some social circles when he was diagnosed with Parkinson’s, but this barrier seemed to dissipate when we walked into the gym. Everyone knows and loves him. And he smiled in return, eyes twinkling like they do when he’s showing you that he cares about you (or that he is up to no good). 

And it wasn’t just his friends who seemed excited to see him. The gym owner was nearly bouncing off the walls when people started to trickle into the gym. His passion and excitement resounded throughout the hall. Working with Parkinson’s patients is clearly a passion of his. He cares for the people as much as he cares about boxing. And his volunteers are equally loving. 

By the time everyone arrived, piles of food were overflowing on the table. You could see character in the dishes. Dad’s Polish friend is famous for his perogi. We brought my mom’s classic cheese ball. The table was diverse, like the people who surrounded it. 

Parkinson’s disease and shyness

Everyone seemed a little bit shy as Christmas cheer bubbled in the gym. Maybe it’s because Parkinson’s targets your vocal cords and speaking becomes a little harder as the disease progresses. But Dad introduced me to everyone in the room, and it was obvious that he’s surrounded by a powerful crew. 

We walked around the gym. Dad punched every bag and showed me what some of the classes look like. I wondered if I might be able to volunteer at a gym that’s close to my home.

Between plates of food, Dad shared an interesting fact about everyone in the room. It’s clear that he greatly respects his peers. And I suspect that the love and respect are mutual.

Earlier in the week, Dad had taken me to a boxing class. Before each class, everyone gathers in a circle and shares a little bit about themselves and what they’re going through. It’s no wonder how the shared struggle promotes empathy and love. Dad joked that the girls talk a lot more than the boys. But everyone has something of value to share. And they do! 

While Parkinson’s disease is cruel and grueling in so many ways, sometimes it has the capacity to bond us, too. And I can’t help but wonder if the illness has the capacity to bring as much positivity as destruction. Whatever the case may be, it gives me hope and courage to see my dad at home among a crew that understands him. 

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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 A Rock Steady Boxing Party Showed Me a Community that Cares appeared first on Parkinson’s News Today.

Deep Brain Stimulation: Time for a Tuneup

tuneup

My sister, Dad, and I waited in the doctor’s office before Christmas for his deep brain stimulation (DBS) appointment. Dad underwent DBS last fall, and it’s time for a “tuneup,” as he likes to call them. I imagine his doctor with a wrench in her hand, manipulating Dad’s brain like a mechanic fixes a car.

If she works on the suspension on the left side, maybe it’ll change the tremors in his left foot. And it does. His doctor punches the instructions into her computer and my dad’s foot stops shaking. It’s an immediate change. We don’t have to wait for medications to kick in or his body to adjust.

His medication dosage is about the same. He experiments to see if a half-dose is enough to keep him going. He thinks it is; his doctor doesn’t.

While we’re in the office, I try to mediate. His doctor — my dad calls her “The General” — tells him that he needs to take his medications regularly and as prescribed. Dad’s face sinks because he has been clinging to the hope that he can reduce them. She explains that patients don’t develop a tolerance to Sinemet (carbidopa/levodopa), but as Parkinson’s disease progresses, a higher dosage is needed. She reassures him that an increase in dosage won’t cause adverse effects. Dad is in it for the long-run, and he hopes that if he plays his cards right, his symptoms will ease later in his life. But his quality of life is suffering now because he is undermedicating.

Sometimes having a window into someone’s life can be heart-wrenching. While I’m looking through the glass panes of my dad’s mind, I realize that he is determined to fight Parkinson’s for as long as he can. And I’m proud of him for being so determined. I know that you can’t give someone the desire to put Parkinson’s in its place, but I also worry that undermedicating is compromising his quality of life.

What has changed?

Dad tells me that he has noticed some subtle changes since the surgery. His eyes are dull with disappointment as he shares that he had hoped for more improvements. He didn’t have a honeymoon period like others do despite his longing for a week without symptoms. This grueling disease has been chasing my Dad since 2013, and he was comforted by the idea of a break. Everything short of a cure is a little heartbreaking. But he does admit to the positive changes, including the following:

  • Parkinson’s patients can experience a strong urge to urinate frequently. Since his surgery, the urge has disappeared.
  • He decided to undergo DBS because his dyskinesia can be debilitating. But since the surgery, the worst of it is gone.
  • His hair is so thick that he jokes about having a ponytail, like the one he had during his youth.

He tells me that his freezing has gotten worse. I observe him walking and notice that he freezes for longer. But he only freezes when he’s trying to navigate a choppy situation — like our Christmas presents all over the floor. It’s as if fear paralyzes him. He worries about stepping on something. But when his path is a straight shot, he zooms away. I wonder if managing our fears can affect freezing.

Sweet relief

I felt a brief sense of relief upon seeing my dad at Christmas. He is 20 pounds heavier than he was before the surgery. He seems to be in good spirits. It’s like a victory among bouts of tremendous loss. It feels as if the surgery has provided us with a deep breath of air after going without it for a long time.

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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 Deep Brain Stimulation: Time for a Tuneup appeared first on Parkinson’s News Today.

Weight Loss and Parkinson’s Disease

weight loss

Dad used to tell us that he has two sets of clothes: a normal set and a set of “skinny clothes” that emerge when he gets sick.

Dad was diagnosed with ulcerative colitis in his 30s, and the illness caused him to lose a startling amount of weight. He was thin to begin with, but the disease found ways to take more away.

Ulcerative colitis became more manageable for my dad as time moved forward. He put on a healthy amount of weight and chose his food based on desire rather than necessity. With the help of my mom and his friends, he was able to nurse himself back to health.

But for the next 34 years, his two sets of clothing would hang in the corner of his bedroom closet because he never was certain when his health might change. Today, Parkinson’s disease is back to challenge this strategy. And Dad’s skinny clothes are making an appearance.

Causes of weight loss in Parkinson’s disease

Weight loss in relation to Parkinson’s disease can occur for a number of reasons. Decreased appetite, additional energy output, and changes in digestion can slow your food intake. And this ultimately can cause a shift in body weight.

It makes sense, really. Dad’s tremors cause him to expend energy 24 hours a day. That’s a substantial amount of time that is spent in motion. And the body needs fuel to maintain this motion.

Dad seems to eat about the same amount, but what he chooses to eat has changed. My little sister makes sure there’s a constant supply of densely packed foods, such as avocados. They juice every morning, squeezing the nutrients out of a shocking amount of produce.

Sometimes I giggle to see him eating a midnight bowl of ice cream or a handful of chocolate. Weight loss almost seems like an opportunity to eat his favorite treats. Dad looks thin, but his doctor seems to think his weight is stable.

Combating weight loss

In a society where weight loss ads litter social media platforms, it is easy to think that weight loss is a good thing. And it can be. But when uncontrolled, one risks becoming nutritionally deficient. And this ultimately prevents the body from using the building blocks it needs to keep healthy.

According to Parkinson’s News Today‘s Patricia Inacio, extreme weight loss can cause dementia, increased dependency care, and a shorter life expectancy. A study Inacio highlighted evaluated several Parkinson’s patients and found that weight loss might be able to point doctors toward an early PD diagnosis. Furthermore, counteracting weight loss might lessen disease-related outcomes.

Whatever doctors continue to discover, managing weight loss appears to be an important element of Parkinson’s. And it’s a common one, too!

Dad’s skinny clothes

More than six years have passed since my dad’s Parkinson’s diagnosis. The journey has been choppy, inconsistent, and filled with color. New challenges always seem to emerge. The disease never slows, but my dad is just as quick to fight back. His adaptability and determination are unmatched.

Today, his pants hang a bit loose around his skinny legs. But the muscles still ripple. His normal clothes have been collecting dust in the back of his closet for a while.

Christmas might be a time when those sizes shift completely, making skinny the new normal. But he’s strong. He spends three days of every week at Rock Steady Boxing, preparing himself to better challenge his disease.

During a recent visit to the gym, emotions bubbled to the surface. I had never seen him so committed to tackling an obstacle. And with great effort comes great change.

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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 Weight Loss and Parkinson’s Disease appeared first on Parkinson’s News Today.

Managing the Cost of Chronic Illness

costs

Chronic illness is expensive. It costs money, time, and peace of mind. Whether you’re sifting through your worries or counting the pennies in your pocket, illnesses affect all avenues of life.

Before the symptoms of a disease appear, one may go about daily life unencumbered by thoughts of self-preservation. But disease changes everything. 

According to the U.S. Centers for Disease Control and Prevention, 90 percent of the country’s annual healthcare spending — some $3.5 trillion — is related to chronic illnesses such as diabetes, Alzheimer’s disease, and others. 

With Parkinson’s disease, the same costs apply. While the return is generally worth the investment, Parkinson’s treatments are expensive. And people most often are hit with shocking bills at the same time they’re losing physical independence.

So how do you foot the bill? Where is the balance between finding the appropriate care and saving your pennies? What do you do when financial limitations find you?

Switching from full-time to part-time work

For many PD patients, one big question is: “Will I be able to keep my job as the disease progresses?” Everyone’s situation is different, and there’s no universal answer to this question. It depends on the job and how PD affects you. 

My dad worked as a Realtor for most of his adult life, and he remains invested in that world. He grew up in the same area where he worked, and many of his clients were friends first. So I doubt he’ll ever entirely give up his profession. But he has certainly chosen to change his relationship with work. 

One thing he noticed early on is that stress seems to drastically affect his PD symptoms. So adapting to the disease was never a debate. He just needed to determine how to move forward. His solution was to slow down and reduce the number of homes he sells. This means that his income has changed as well. 

Luckily, my mom is a worker bee. Even when she has a day off, she fills her time with projects and goals. She continues to work full-time and hold down the fort. But the financial side of PD has been fluid and will continue to change. Will my parents have to downsize houses again one day? Sell some assets? What happens when my mom realizes she’s in her 60s and can’t work as much anymore? 

Medical care and travel expenses

Medical care is a complicated subject. If you’re lucky enough to live in or near a city, the options allow you the privilege of choice. But what if you have to commute an hour each way and you’re not comfortable with your driving abilities anymore? What if you live in a remote area of the country and medical care is limited? The greatest cost in this situation seems to be time — your time and the time of a loved one.

Since undergoing deep brain stimulation, an expensive surgery, Dad continues to see his neurologist to tune the hardware. He always has a companion for these visits, which increase his quality of life. But he gives up time to travel and money for gas, and he probably pays something for each doctor visit. Sometimes he’ll also see an herbalist (the “witch doctor,” as he says) and a chiropractor. And even with insurance, he spends a lot of money on medication. 

My mom’s thoughts on the cost of Parkinson’s

My mom was kind enough to share some thoughts about the cost of Parkinson’s disease. She said that while they’re doing fine, it seems that “fun money” inevitably turns into bill money. Yet she remains positive. She, like my dad, continuously adapts to the changes that come with chronic illness. 

She ended a recent email on a positive note: “NONETHELESS, we are doing alright!”

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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 Managing the Cost of Chronic Illness appeared first on Parkinson’s News Today.

Looking at Parkinson’s Potential Links to the Gut Microbiome

microbiome

I wonder if my dad’s battle with ulcerative colitis is linked to his struggles with Parkinson’s disease. Because of a series of medical complications, he’s missing his colon, a vital part of the digestion process. This affects how he digests food and medicine, which in turn affects his intestinal microbiome.

Recent research looks at how the microbiome might be linked to Parkinson’s disease. The idea seems understandable enough: You are what you eat, right? But you are what your body can process as well. Which makes me wonder: Is he alone in having both ulcerative colitis and Parkinson’s?

How might ulcerative colitis and Parkinson’s be related?

According to one recent study, those who have ulcerative colitis had a 30 percent higher risk of Parkinson’s disease than the control group. My dad seems to fall in the 30 percent group.

Not everyone with ulcerative colitis loses the colon. But my dad did, which seems to add another layer to his relationship with Parkinson’s disease. The colon helps the body during the final stage of digestion, preparing you to dispose of waste while collecting the remaining fluids.

If someone were to lose their colon to a disease like ulcerative colitis, the loss would affect the final stages of digestion. And this process likely would affect the intestinal microbiome. So, how might the intestinal microbiome relate to Parkinson’s?

A 2017 study in the journal npj Parkinson’s Disease discusses a link between the intestinal microbiome and disease: “Changes in the composition of intestinal bacterial populations have been associated with a wide array of conditions including neurological and neurodevelopmental disorders such as multiple sclerosis, autism, depression, schizophrenia and PD, and studies are beginning to explore some of the mechanisms that contribute to the powerful influence of the microbiota.”

If ulcerative colitis affects the intestinal microbiome, and the microbiome is linked with Parkinson’s disease, ulcerative colitis could be related to Parkinson’s.

Gut microbiome and disease prevention

If the gut microbiome is related to the development of certain illnesses, can those illnesses be prevented? According to a 2016 study in the journal Pharmacology & Therapeutics, “The interaction between the host and its gut microbiome is a complex relationship whose manipulation could prove critical to preventing or treating not only various gut disorders, like irritable bowel syndrome (IBS) and ulcerative colitis (UC), but also central nervous system (CNS) disorders, such as Alzheimer’s and Parkinson’s diseases.”

The npj Parkinson’s Disease study also raises the possibility of diagnosing Parkinson’s at an earlier stage by monitoring the bowels. Its authors noted: “Meta-analyses suggest that constipation is more than twice as common in people who develop PD compared to those who do not, and that constipated individuals are twice as likely to develop PD within 10 years of their evaluation.” By recognizing the relationship between the brain and the gut, we might be able to better understand the link between digestion and the central nervous system. This knowledge could help in developing a treatment at an earlier stage of the disease.

Additionally, we don’t know whether Parkinson’s might be a cause or an effect of the microbiome’s status. It’s possible that Parkinson’s affects the gut. Per the same study: “At this time, it is not clear whether the observed changes in microbiota in PD patients are an initial occurrence that contributes to the development of neurological dysfunction and degeneration, or if they emerge in response to PD-related pathology in the enteric and/or the CNSs that impairs peristaltic activity and induces inflammation.” But my dad had ulcerative colitis many years before the first signs of PD showed.

I’m interested in seeing what developments will occur as we begin to better understand Parkinson’s disease. Perhaps emerging science will discredit the relationship between the microbiome and Parkinson’s disease. But these statements and statistics seem to hint at a significant relationship between the digestive process and the nervous system.

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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 Looking at Parkinson’s Potential Links to the Gut Microbiome appeared first on Parkinson’s News Today.

Writing About Parkinson’s Disease Is Hard

writing

Writing about Parkinson’s disease is a cumbersome game.

I’m a journalist in my regular life, so I’m no stranger to telling complicated and emotional stories. But my lens is usually focused on others. I tell stories about accomplished athletes and faraway places that don’t affect me directly. But Parkinson’s disease (PD) does.

My last couple of columns revolved around people including Muhammad Ali and James Parkinson. That gave me an outlet to talk about PD without directly involving my dad. Learning about these heroes allowed me to put up a barrier between my heart and my words. But today I’m trying to let you in.

The truth is that sometimes I don’t want to talk about PD because it hurts to turn over these rocks. Talking about the disease forces me to turn inward and evaluate my own feelings. And while I’m incredibly grateful to be here connecting with you all, facing illness isn’t easy — even when it’s not my own.

My kind, sassy dad battles PD every day. And contributing to a column regularly feels like a constant reminder that he’s suffering. As strong and determined as he is, the ebbs and flows of the disease are always evident, glaring back at us like animal eyes in the dark.

An update on Dad

When I call, Dad’s voice sounds changed. It’s like Parkinson’s is forcing his entire body to slow down. His words come a little more slowly. But he’s still quick to laugh.

After his recent deep brain stimulation surgery, he’s finally getting the chance to go back to boxing. The structure, physical fitness, and community play a vital role in his world.

My little brother recently sent a photo of himself and Dad smoking their “old man” pipes. The photo made me giggle because I realized that after a few short weeks, Dad’s hair has grown back.

One of the scariest parts of seeing him undergo deep brain stimulation was that they shaved his hair. His big, fluffy head of hair has been a constant in his life. I’d never seen him without it. So seeing it come back so quickly provided relief, but also a bit of humor. Dad has always had great hair. It’s comforting to know that some things never change.

Which walls should remain standing?

Perhaps the hardest part of writing about PD is that I don’t want to invade corners of my dad’s life that should be kept private. Parkinson’s disease is a thief of so many things. I don’t want to take his privacy away, too.

Even Muhammad Ali talked about wanting to face the disease behind closed doors, because being seen shows the world that you’re struggling. Despite these fears, Ali carried the torch during the 1996 Olympics. Many were inspired by his courage; he shook as he lit the flame.

Like Ali, my dad has provided a window into his life. He opened up his world to us so that maybe someone else wouldn’t feel alone.

I know Dad is proud of me and the conversations we’re starting by talking about PD. I wanted to use this platform to get him to speak up a bit because he isn’t one to complain about his struggles. But I’ve never been someone who wants to create an exposé at the expense of another. That’s the greatest balance we must find as journalists: Does telling a story do more harm than good?

While sometimes I find it hard to verbalize the struggles associated with chronic illness, I also think that starting a conversation is vital to change. Suffering alone seems to increase the pain. Telling our story, however hard it may be, seems to offer a sense of connection to people who can relate.

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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 Writing About Parkinson’s Disease Is Hard appeared first on Parkinson’s News Today.