Tag Archives: multiple sclerosis

Gamers, Rejoice! New Science Says Video Games Improve Wellness

In 2015, a group of gamers played The Legend of Zelda for 150 hours straight to raise money for our nonprofit. Their efforts made a significant impact in the lives of our clients and their families. While Zeldathon Hope was raising over $250,000 for charity, the marathon was also raising an interesting question: are video games inherently damaging to health and wellness?

Pokemon GO

Are video games helpful or harmful to our health?

Though some interactive games like Pokémon GO may be an exception, don’t video games basically require participants to be sedentary and isolated? As reporter Martha Clement Rochford put it, “The good news for gamers is that science disagrees.” Here are 5 ways that video games can promote physical and psychological wellbeing based on recent scientific research.

Video Games Enhance Our Reaction Times And Precision

Researchers at the University of Rochester recently concluded that playing an action-based video game daily “has a beneficial effect” on players’ brains. Engaging in a stimulating gaming experience for 30 to 40 minutes per day can improve eyesight, reaction times, mental rotation capacity and the player’s ability to move efficiently from one task to the next. Researchers concluded that if games released in the future are planned and developed specifically for people with chronic conditions, they “can help patients with chronic illness, anxiety and pain management” by encouraging healthy cognitive development and greater physical strength and dexterity.

Call of Duty

Action games “generated a moderate helpful effect on the overall cognition”

Other recent studies have corroborated those claims, finding that “action games generated a moderate helpful effect on the overall cognition.” Action games like Call of Duty help to develop “fast and precise responses” and “may produce structural changes in the brain“ by encouraging greater neural plasticity, particularly in young adults whose brains are still developing. Greater neural plasticity means an enhanced ability to learn and remember new information, adapt to change or react quickly to new circumstances and challenges.

Video Games Help Us Study And Fight Cognitive Decline

A trial in the United Kingdom is studying how Parkinson’s disease impacts cognition. The twist? Researchers will be using “a scientifically-designed video game as a non-invasive medical device.” The game will be specialized based on each participant’s unique mental processing and memory storage challenges and will offer “holistic training” to improve memory, processing speed, function and attention.

Link Zelda

New games could be used “as a non-invasive medical device” for cognitive training

For now, the initiative will focus exclusively on testing the potential for video games to improve life for people living with Parkinson’s disease, but the results could influence how medical professionals assess and treat multiple cognitive conditions, including traumatic brain injuries, PTSD and “cognitive deficit caused by cancer.”

Video Games Can Be A Physical Rehabilitation Tool

“When I was at Rusk Rehab at NYU Langone,” explains HelpHOPELive client Nicole Seefeldt, “I saw the hospital-based rehab center using Wii Fit and Wii Sport to rehab certain skills in their patients at all age groups. It inspired me to get one because I saw that patients were not only enjoying it but receiving benefits from it.


Nicole saw Wii games used as tools for hospital-based rehabilitation

Nicole also believes apps can help encourage people to engage with physical therapy and get in touch with their health in a way that “is a lot more dynamic than just sitting in a chair with weights. Several systems also have brain games which are good to play for cognitive development, too.”

Video Games Have Meaningful Psychological Benefits  

Gaming doesn’t just physically alter and improve your cognitive capacity. According to studies on the psychology of gaming, “gamers can address their fundamental psychological needs through playing games.” As cyberpsychologist Berni Good concluded, gaming can help players to feel competent as they master each level and challenge, which improves their psychological wellbeing. Whether through a multiplayer online game, couch co-op or a little social media gloating, gaming can also help players to “relate to others in a meaningful way” as they collaborate on game challenges and share their experiences with others.

Zelda coop

Personal achievements and co-op play can improve psychological wellbeing

Don’t think these results only apply to massive multiplayer action wars or shoot-‘em-up thrillers. Gaming can also tap into “the idea that we need to be masters of our own destiny,” encouraging players to feel like they are making independent choices that are reflected in real-time changes to the game environment or questlines.


Moffit (center) believes gaming for good can lead to emotional fulfillment

Combine video games with good deeds, like the Zeldathon Hope team, and you have a recipe for social and emotional fulfillment. “We’re creating something more than just a marathon,” explained Zeldathon founder Matthew Moffit. “We’re a real community, dedicated to forces of good. We like to think that we’re working to defeat the evils of the world through our marathon.”

Video Games Help Us Track And Treat Chronic Symptoms

Microsoft Research in Cambridge is tapping into the Xbox Kinect tactile gaming platform to support people living with multiple sclerosis. The console’s motion sensor system will be integral to new research on the effectiveness of MS treatments and the progression of symptoms. Through Kinect-compatible tests, people with MS will be asked to move or touch certain parts of their body and researchers will use a rating scale to track the strength of MS symptoms that affect mobility.


The Xbox Kinect has been used to track MS symptoms

A recent study found that cognitive training video games developed by neuroscientists could help people with MS to strengthen their neural connections to promote cognitive wellness. MS can impact the thalamus in the center of the brain, leading to the cognitive dysfunction or “brain fog” experience in people living with the condition.

Study participants “had significant increases in thalamic functional connectivity” after participating. One researcher concluded that “video games can promote brain plasticity and can aid in cognitive rehabilitation” for people experiencing cognitive dysfunction due to MS or other brain-disrupting chronic conditions. Researchers hope to use their findings to add to existing rehabilitation pathways for people with MS.

A Bright Future For Gaming-Based Research And Treatment 

Video game platforms and interfaces continue to evolve year after year, and researchers are chomping at the bit to assess their health and wellness applications. In fact, though virtual reality has just barely reached the consumer market, it is already being used to test and diagnose individuals with cognition and memory challenges. It’s good news across the board for gamers, who now have a tangible way to defend their digital obsessions with legitimate scientific research.

virtual reality gaming

Virtual reality is already being used to diagnose some cognition issues

Think these findings supersede the need for balance and moderation in gaming? “When we think about the effect of video games on the brain, it’s very similar to the effect of wine on health,” explained Dr. Daphne Bavelier in a TED Talk. “There are some very poor uses of wine. There are some very poor uses of video games.” But, as new research proves, “when consumed in reasonable doses,” video games can be a beneficial tool for managing symptoms, improving cognition and building positive psychological foundations.

Are you a gamer living with a chronic condition or disability? We’d love to hear about your experiences with gaming and wellness on Facebook.

Mobility Matters: The Surprising Benefits Of Good Balance

Balance guru Helena Esmonde is the most senior neurological therapist at Penn Therapy & Fitness in Radnor, Pa. As we explore why mobility matters in honor of Mobility Awareness Month, she explains how balance can significantly influence our quality of life.

Helena Esmonde HelpHOPELive

Senior neuro therapist Helena Esmonde

Tell us about yourself!

I am a senior therapist II, and I participate in mentoring, teaching and research in addition to quality clinical care. As a neurologic and vestibular (inner ear balance) specialist, my focus is to provide individualized rehabilitation using evidence-based practice to ensure the best possible function and quality of life for my patients.

Why is balance important?

Balance is essentially the ability to keep your center of mass over your base of support, which is your two feet. With a working balance system, we can stand safely, react effectively, avoid falling when engaging in a planned movement, and walk and move without stumbling or falling.


Balance is the ability to keep your center of mass over your two feet

When our balance is impaired, we are more likely to fall and get injured. Falls are the most common cause of traumatic brain injuries. Having the best balance possible minimizes the risks for serious and potentially life-altering injuries.

Which conditions can influence our balance?

Our balance can be impaired because of weakness, age, a neurological disease or injury, vision issues or decreased cognition. However, falling should not be seen as a normal part of aging or something that is inevitable. I often tell my patients, “Your auto-pilot for keeping your balance is not as automatic as you get older,” and that’s why patients train with us and learn how to move more safely.


Falling should not be seen as a “normal” part of aging

How can poor balance affect your mind as well as your body?

There are a few different ways that balance can be emotionally and mentally distressing. When a person’s balance is impaired for any reason, that person lives in constant fear of injury and therefore tends to self-limit their activity. This can mean that they avoid exercise because of a fear of tripping on an uneven patch of sidewalk. That person then loses the mental and emotional benefits of regular exercise as well as the physical benefits.


Poor balance can invoke a fear of social environments

A person with poor balance often also chooses to avoid positive social experiences due to a fear of falling. For example, someone may not visit a friend because the friend does not have a railing next to their staircase, or they may not attend a party because of the fear of losing balance if someone bumps into them accidentally. Poor balance can lead to social isolation as well as physical deconditioning or disability.

How can physical therapy improve balance?

There are numerous advanced physical therapy techniques for training better balance, some of which are tailored to people with specific conditions. The focus of all such physical therapy is to key in on an individual patient’s goals. I am currently training an individual with MS who wants to be able to walk, dance and move safely at her daughter’s wedding in a month. Like most people with MS, she gets fatigued easily and finds that the fatigue negatively affects her balance. Another patient is trying to progress from using a walker to using a cane safely to free a hand for opening doors, carrying items and shaking someone’s hand in greeting. I try to focus on the goals that will bring quality to each unique person’s situation, whatever it may be.


Could better balance improve your day-to-day interactions?

Can physical therapy be expensive?

Physical therapy is not as expensive as some other options, such as surgery, to correct balance issues. However, if a patient has a major injury or illness (including trauma, a stroke or a spinal cord injury) he or she will likely require therapy and rehabilitation for a longer time, including inpatient rehabilitation and home care, before “graduating” to an outpatient therapy setting. The numbers can add up.


“It’s hard to put a price on dancing at your daughter’s wedding”

Our main goal is helping patients get back to the highest level of functioning. It’s hard to put a price on dancing at your daughter’s wedding or shaking someone’s hand when you meet them. At Penn Therapy & Fitness, we offer a charitable care program for patients who are unable to afford their outpatient therapy. We also work with patients to help identify other resources that may help them afford care. This is one of the many reasons we appreciate partnerships with such wonderful organizations as HelpHOPELive!

Are there any ways to improve your balance at home?

Exercise is a critical element in decreasing your risk for balance issues and falls, but it’s important to understand what sort of exercise has the greatest benefit. Tai Chi, Pilates and yoga can improve balance, but for those who are not up for that level of challenge, strength in the hip muscles and core strength (belly and back muscle) are the most significant factors.


Try yoga to improve balance, or work on strengthening your body daily

Lie on your side and lift your top leg up and down. You’ll work important hip muscles that keep your pelvis stable for balance. In addition to exercise, have your vision checked at least yearly. Keep your mind sharp with crossword puzzles or other brain games that benefit your eyes and your brain! Taking action to prevent falls becomes more important as you age. Talk to your doctor and make sure you can keep your balance everywhere you want to go!

Need help covering the cost of rehabilitation to maintain your quality of life after a catastrophic injury or illness? Visit helphopelive.org to start a fundraising campaign with our nonprofit.

HelpHOPELive Clients In The News March 2016

Spring is a season of hope, renewal and rebirth. For these three clients, spring represents a chance to enjoy a healthier, happier future with help from community fundraising.

Scott Truran: Veteran Sets Sights On Treatment For Debilitating MS

Thirty-nine-year-old Scott Truran was diagnosed with a progressive form of multiple sclerosis in 2011. Before the diagnosis, the former Marine was very active and prioritized staying in shape. Today, he has to rely on a cane to walk and his right side feels like it’s been “dipped in concrete,” he explained.

Scott Truran HelpHOPELive veteran MS

Scott will continue to lose mobility as his MS progresses

Scott will continue to lose mobility as his MS progresses. It’s likely he will eventually need a wheelchair to get around. Scott and his family learned about a treatment option for MS that may help to limit Scott’s mobility losses. The treatment involves wiping out his immune system with low-dose chemotherapy, then using stem cells, previously harvested from his blood, to rebuild a new immune system. This treatment option is only available as a clinical trial in the United States. Scott and his family will need to raise $80,000 to receive the treatment in Mexico as well as additional funds to offset the out-of-pocket costs of travel and temporary relocation for Scott and a caregiver.

Scott Truran HelpHOPELive veteran MS

Scott is appealing to his community for support for his treatment goals

“The money is the biggest obstacle,” Scott explained, “but it’s a small price to pay for a chance to slow [the] disease or stop it entirely.” Scott will fundraise with HelpHOPELive to maximize his chances of securing the funds he needs to potentially halt or reverse the progression of his MS. (Veteran’s family asking for help with progressive form of multiple sclerosis)

Theo St. Francis: Young Man With Spinal Cord Injury Plans “His Comeback”

In 2013 while taking part in a pre-orientation at MIT, Theo broke his C6 vertebra in a diving accident. Theo became paralyzed from the chest down with some shoulder and arm movement and limited finger dexterity. Doctors told Theo he would likely never walk again.

Theo St. Francis HelpHOPELive

“I am done managing. I am overcoming.”

As the Sonoma Index-Tribune reported, Theo “set his brilliant mind toward devising a plan for his comeback.” In December 2015, Theo reached a major milestone when he was able to sit on a barstool during a celebration with friends. He tries to spend time away from his manual wheelchair, pursuing activities that “align with what my goals are,” from driving an adaptive car to biking, skiing, surfing, kayaking and traveling.

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Fundraising with HelpHOPELive is allowing Theo to pursue the intensive spinal cord injury therapies he credits with helping him improve his mobility over time. Theo emphasizes the word “recovery” and spends his days looking forward. “I put the impossible in quotes,” he explained. “I am done managing. I am overcoming.” (Theo St. Francis overcoming odds to regain mobility)

Michael Mahan: Community Supports Man Facing Intestine Transplant

In 2012, what Michael Mahan and his family believed to be an upset stomach turned out to be a dangerously twisted small intestine. Since doctors removed the failing organ, every 6-8 weeks, Michael ends up back in the hospital with septic blood. With no small intestine to help his body process food, the husband and father of three relies entirely on intravenous nutrition as he waits for an intestine transplant.

Michael’s priority today is raising funds to cover the out-of-pocket expenses associated with an intestine transplant and follow-up care. He may need to spend up to 10 months in a transplant center after the procedure, and the cost must be paid up front before he can be put on the transplant waiting list.

Michael Mahan HelpHOPELive

Michael is a husband and father of three

Fundraising with HelpHOPELive is helping Michael to secure the funds he needs to get the transplant, but it’s also connecting his family with their supportive community. “We’re just so excited to do everything we can to help him out,” said local resident Jon Rosenlund. “He is a wonderful man and a great father. It’s an honor to help him, but we need a lot of help.” (Fundraiser to benefit man awaiting intestinal transplant)

Get your campaign in the news! If you need help with press releases and media outreach, contact your HelpHOPELive Fundraising Coordinator today.

Voices of Hope: Living Well With A Chronic Illness

Anna Crum was in junior high school when she began to experience persistent double vision and sixth cranial nerve palsy in her left eye. An MRI revealed that Anna was fighting relapsing and remitting multiple sclerosis (RRMS). Anna explains how she holds onto hope while fighting the debilitating mental and physical effects of RRMS.

Anna Crum MS HelpHOPELive

Anna Crum is living with multiple sclerosis.

How do your RRMS symptoms disrupt your daily life?

Shortly after the diagnosis, I became legally blind and had to learn to read Braille and rely on a cane for mobility. My current list of symptoms has grown to include a different diplopia (double vision) in each eye, color discrepancy, contrast loss, nerve pain on the left side of my face, muscle weakness in my left leg, short-term memory difficulties, fatigue, bowel and bladder dysfunction, and the occasional slurred speech. Without special lenses, I would not be able to read or drive.

My symptoms are unpredictable. On a given day, there is a long list of things that can go wrong. But you try to plan and compensate as best you can to hopefully manage some of the more severe symptoms to prevent them from hindering your daily life.

What has been the most difficult part of your struggle with RRMS?

MS finds a way to keep chipping away at your independence. In my case, it took everything I had to make it through college. Despite my success, I am now living back at home, unable to work full time and leaning on family for support. MS forces you to reach out. Admitting you need help and accepting it can be very difficult, especially if you are naturally an introverted person who is goal-driven and independent.

Why do you think people with MS sometimes hide their illness from the world?

You encounter enough people who don’t understand and eventually you learn to blend in. I have many times described myself as an illusionist and I am sure other people living with chronic illnesses can relate. People don’t see the preparation or the aftermath.

Everything in my life has become so calculated. I plan how much walking I will need to do in a day, how many hours of energy I have, how much my eyes can handle or how much pain I can tolerate ahead of time. Everything is staged. Seldom do I let people see the daily struggle [and] the days where I can’t even get out of bed.

Do you have a resolution for 2016?

This year, I am focusing on transparency, community and relationships. The National MS Society has a saying: “Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other.” Too often, people with a chronic illness suffer in silence. When I was first diagnosed, I started advocating for awareness. It was a passion of mine. But eventually I lost the energy. All the energy I had focused on just surviving. Eventually I chose silence for security and traded my voice for a disguise in an attempt to mask my disease.

This year, I want to use my voice again; I want to make an impact. Hopefully my journey will help inspire someone else to keep pushing through. Too often those suffering wait until it’s dire before they reach out for help. Keeping the disease invisible gives it that much more power and it confines you. I want to inspire someone, somewhere, to not give up.

Why do you plan to embrace your MS this year?

At times it feels like a door slams in your face everywhere you turn, but you keep going, one step at a time. Eventually, MS gave me a new path. Because of my disease, I found a passion and hopefully an eventual career as a dietitian. I want to help others manage their symptoms as best as possible, improve their quality of life, and help them learn to thrive despite an illness. Nutrition isn’t a cure, but it can make a huge impact.

Anna Crum HelpHOPELive nutrition

Anna plans to help people with MS manage their nutrition.

What advice can you give to someone newly diagnosed with MS?

Make your health your number one priority. I paid dearly for the instances where my priority became school or some other goal where I pushed myself too hard. Don’t push yourself to go at anyone else’s pace or to meet anyone else’s expectations.

Focusing on what you stand to lose or have lost is too overwhelming. Instead, focus on what your disease adds to your life. This disease builds character, teaches resourcefulness, ingenuity, adaptability, resilience, and gives you a unique perspective. You are stronger than you know, and maybe you can inspire someone with your unique story to find their own strength. Focus on what keeps you hopeful, and hold onto your tenacity.

What does hope mean to you?

To me, hope encompasses endless possibilities. There are always new ways to adapt, a new perspective to discover, new lessons to learn, new relationships to form. There is ALWAYS a reason to keep persevering.

Anna is currently studying to become a registered dietitian and is working on a photography project on the invisible symptoms of MS. She is fundraising with HelpHOPELive for a stem cell transplant that could improve her life with RRMS.

HelpHOPELive Clients In The News October 2015

October brought us falling leaves, pumpkin spice indulgence and autumn fundraising milestones! Here are three compelling client stories featured in the news this month.

Matt Collura: Annual 5K Provides Financial And Emotional Benefits

Matt Collura 5K Run/Walk

In March of 2011, the Collura family, of Monroe Township, N.J. was rocked by a shocking accident: a snowboarding injury left then-28-year-old Matt Collura reliant on a wheelchair for mobility as he coped with a life-threatening traumatic brain injury. From acquiring specialized accessibility equipment that would keep him safe in his home to pursuing intensive rehabilitative therapy, Matt was facing a long emotionally and financially draining road to recovery. His friends and family members turned to HelpHOPELive for support. With Matt’s passion for athletics and running, a friend suggested planning a 5K fundraiser in his honor to rally community members to help cover the uninsured expenses as a result of injury.

Matt Collura 5K Run/Walk 2015

The Matt Collura 5K Run/Walk celebrated its 5th anniversary on October 11, 2015. The event draws hundreds of supporters who enjoy the opportunity to give back to their friend and neighbor as he continues to pursue recovery with dedication. For Matt and his family, the event is far more than an opportunity to offset vital medical expenses; the run provides a powerful dose of emotional support that keeps him striving forward. “This is a chance for [us] to participate in a day that Matt refers to as the best day of the year,” his supporters wrote on his HelpHOPELive Campaign Page. Since the accident, funds raised from the Matt Collura 5K Run/Walk have helped Matt to pursue the rehabilitation he needs to speak, walk with minimal assistance and pursue a greater degree of independence by moving out of his parent’s house and into a group home. (5K supports Monroe man’s recovery from accident)

Patrice Penny-Henderson: ‘Angel’ Aids Music Teacher With Rare Disease

Patrice Penny-Henderson Elkhart kidney transplant

A rare blood cell disease severely reduced Patrice Penny-Henderson’s kidney function, forcing the elementary school music teacher to receive dialysis three times each week to stay healthy. Despite Medicare coverage, out-of-pocket costs of $20,000 or more made a kidney transplant seem out-of-reach for Patrice. That is, until a chance encounter blossomed into an unexpected lifeline.

In 2015, seven years after she was diagnosed with end-stage renal failure, Patrice reconnected with a former co-worker, Susan Law, who was stunned to hear about her medical ailments. Susan sprang into action, connecting Patrice with HelpHOPELive and helping her to plan community fundraisers to cover her medical bills. Susan and Patrice “chose HelpHOPELive over other popular sites like GoFundMe” in order to secure a tax-exempt donation option for her contributors and expert insights from a HelpHOPELive Fundraising Coordinator. Patrice calls Susan “an angel” for stepping in to support her efforts to secure a lifesaving transplant. (Longtime Elkhart music teacher…needs kidney transplant due to rare disease)

Michael Carns: Military Vet Puts Difficulties On Display To Fundraise For MS

Michael Carns veteran MS multiple sclerosis Marine National Guard

After dedicating himself to years of service in the U.S. Marine Corps and National Guard, Michael Carns was attacked by an enemy of a different kind: multiple sclerosis (MS). The 46-year-old father of three began to rapidly losing his independence and his mobility, struggling to provide for his three children as daily tasks like cooking and using the bathroom became formidable obstacles.

That’s when Michael learned about a treatment trial in Chicago that offered hope for potentially halting the progression of his MS in its tracks. He would need to raise $150,000 to be eligible for the potentially life-changing course of treatment. Michael knew he had to do something to show his community why he needed their emotional and financial support. He reached out to a local news station and offered them a chance to film the impact of MS on his daily life.

In a video interview, Michael shows viewers what life with MS really looks and feels like, from painstakingly transporting himself to his son’s football games to coping with fears that he will not be there to walk his daughter down the aisle on her wedding day. For Michael and his children, fundraising with HelpHOPELive has come to represent a second chance – an opportunity for Michael to pursue advanced treatment that could give him back his independence. “Believe that there is hope, still, because there always will be,” affirmed his son Mikey. (Military veteran hoping for treatment to fight MS)

Get your campaign in the news! If you need help with press releases and media outreach, contact your HelpHOPELive Fundraising Coordinator today.


How A Marine and Father of Three Fights Multiple Sclerosis

Michael Carns is a Marine and National Guard member and a single father with three children. He was diagnosed with multiple sclerosis in 2013. He experienced rapid physical deterioration. Within two years, he has gone from independence to relying on a cane, a walker and finally a scooter to get around. Mike is fundraising for HSCT (hematopoietic stem cell transplantation), a course of treatment that is not covered by insurance. We spoke to Mike about the daily struggles, setbacks and victories that define his life with MS.

MS multiple sclerosis Michael Carns Mike Carns Marine National Guard

Mike is fundraising for treatment for multiple sclerosis.

How much did you know about MS before you were diagnosed?

I had never been personally affected by MS and neither had anyone in my family. Since my diagnosis, I’ve learned that parents of friends and some of my own friends growing up had or have MS. I share the information I find with them and they do the same for me. To defeat this disease, you need to fully understand it.

Where do you find MS information?

I typically find MS information online. I am a member of several different MS groups on social media, many that specifically relate to HSCT treatment for MS. I have been able to connect with doctors, researchers and others with MS through social media. We share a common enemy, so it makes sense for us to talk to each other about it.

Does MS disrupt your daily life?

My days are very limited. The first hurdle I face is memory: when I wake up, will I even remember what I need to get done that day? Most days, I get out of bed, watch TV, play games with my children, make meals for them and go back to bed. With MS, you learn how to manage your time carefully. I plan ONE thing to check off my list per day – anything else is a bonus. By the end of the day, even though I feel exhausted and worn out, I’ve exerted virtually no physical energy.

Has your diagnosis affected your family?

My youngest son wants to be a Navy SEAL. My daughter wants to work in the music industry, and she would love for me to walk her down the aisle. My eldest plays football and is going into high school this year. He wants to play for the NFL one day, of course, and join the Marines once he’s graduated from college. I used to coach him in football when he was younger, but today, I can’t get to his games without my scooter and I can’t stand the heat long enough to go and see him practice.

Michael Carns Mike Carns Mikey Carns

Mike with his girlfriend Kelly and son Mikey.

It’s disheartening. I want my kids to have the childhood that I got to have. I didn’t have to worry about Mom or Dad, but they have to spend their time thinking, ‘Is Dad okay? Do I need to do laundry or dishes for him?’ My kids understand that I have new limitations now. I want them to be able to be kids again. I feel like I’m taking time and life away from them as I’m battling this disease. I want to be there for my family again.

How has MS affected your financial situation?

The cost of potential treatment options emerged immediately as a barrier when I began researching. If the HSCT treatment is successful, the hope is that I won’t need more treatment in the future, so this is one big cost that needs to be overcome as quickly as possible. I spend a lot of my time each day trying to fundraise successfully so my father doesn’t have to give up his house to get me treatment. Even small bills can be difficult to keep up with as so other daily expenses add up. I’ve had to cut down my food bill and make other sacrifices to keep up with expenses.

Michael Carns marine uniform service veteran

Mike in uniform.

Will reaching your fundraising goal and pursuing treatment change your life?

I think a lot of stress will be taken off. We will all be able to live with what I can and can’t do definitively. I’d be able to return to work and be a part of society, making money instead of just receiving it to get by every month. I’ll be able to do simple things like answering phones and take care of household activities without pain or exhaustion.

Michael Carns Mike Carns Marine National Guard veteran

Mike served as a Marine and National Guard member.

It would be wonderful to experience my body healing itself. I want to be able to enjoy watching my kids grow up. Anyone who has or had MS knows that feeling – it’s awful to feel that loss of independence. I want to be able to be active and independent again. Even if I can stay where I am now, I can learn to live with it. I just hate feeling like things are getting worse.

Ideally I’d like to get back to coaching sports and go to school to choose a new career path. I’ve always wanted to be a chef, and there are so many other paths that attract me, including teaching. Right now, I can’t make plans for the future — there’s no roadmap with MS. As a society, our technology has come so far – we need to come up with a way to provide effective MS treatment to the people who need it. I don’t want to slow down or manage MS – I want to beat it.

What keeps you positive while you battle MS symptoms?

My perspective is that if it wasn’t me diagnosed, it would have been someone else. With everything I have gone through and done in my life, including fighting in three wars and living an active and adventurous life, I’m still here. Maybe I have this condition because someone else would not have been able to handle it or would have caused harm to themselves or their families because of it. That train of thought keeps me focused.

USMC United States Marine Corps Marines Michael Carns Mike Carns veteran MS multiple sclerosis

Mike served as a United States Marine.

Humor is important, too – you learn to laugh at yourself when you can’t button a button or you slide off the bed as you’re leaning on it for support. If you can’t laugh and continue to live your life, MS will get the best of you.

It’s amazing that it takes a diagnosis or a negative event like this to change your outlook. When you start to lose abilities and time, you look back and think, I took it all for granted. You become a lot more empathetic – now, when I see someone in a handicapped spot who doesn’t look disabled, I understand that their battle might be on the inside.

What piece of advice would you give to someone who was just diagnosed with MS?

Connect with other people who share this condition. Connect with me! Find reliable resources online. Start looking around, and if you have questions, ask them all. Make your own decisions about management and treatment based on the information you find. You are the best advocate you’ll ever have. Doctors, friends and family members can support you, but it’s important to take this process into your own hands. Reach out – don’t ever be afraid to ask for help or advice.

Visit https://helphopelive.org/campaign/6491 to follow his journey or donate to HelpHOPELive in his honor. HelpHOPELive does not endorse any specific treatment facilities or courses of treatment.

Ask A Professional: How To Cope With Chronic Pain

Dr. Stephen F. Grinstead is a chronic pain management expert and author of multiple chronic pain management books including “Freedom from Suffering: A Journey of Hope.” We spoke to Dr. Grinstead about separating physical pain from psychological pain to improve your quality of life.

[Pain management is a complex and sometimes controversial topic. A chronic pain patient explains her own perspective at the end of this article.]

HelpHOPELive chronic pain

Chronic pain can affect you both physically and psychologically.

The Physical Side of Pain

Reports from the Institute of Medicine state that at least 100 million Americans are affected by some degree of chronic pain.

The term ‘chronic pain’ typically includes any pain lasting for 12 weeks or more. While ‘acute pain’ acts as an alert to draw attention to an injury, chronic pain is a persistent condition that can last for months, years or even decades. Chronic pain may cause sleep disturbances, a stifled appetite, changes in mood and limitations to a sufferer’s movement and flexibility.

chronic pain physical symptoms HelpHOPELive

Acute pain alerts you to a problem. Chronic pain is persistent.

According to Dr. Stephen F. Grinstead, because chronic pain may stem from various areas within the nervous system, chronic pain can impact multiple parts of the body at once. Chronic pain is a side effect associated with a variety of conditions including fibromyalgia, multiple sclerosis, Crohn’s disease and some cancers.

The Psychology of Pain

“Pain doesn’t just hurt,” said Dr. Grinstead, “it changes the most basic neurophysiologic processes in the human body.” Your mental state may create the difference between a mild pain response and what Dr. Grinstead defines as suffering.

“Pain is a physical sensation…suffering results from the meaning or interpretation your brain assigns to the pain signal,” explained Dr. Grinstead. When you view your pain as awful, interminable, constant and beyond help, you are experiencing the psychological side of chronic pain.

HelpHOPELive chronic pain mental

There are psychological effects associated with chronic pain.

Dr. Grinstead identified several methods for combatting your mental and emotional responses to chronic pain.

Step one: recognize that your thoughts generate an emotional response.

When your thinking is distorted, you’ll quickly feel uncomfortable emotions like fear and anxiety. These negative emotional responses can lead to self-defeating thoughts, like:

  • My pain is never going to stop.
  • My pain is horrible, awful, terrible.
  • My pain is killing me.
  • My pain is torturing, grueling or punishing.
  • My pain is distressing, excruciating or agonizing.
HelpHOPELive chronic pain crossroads

Are your chronic pain reactions extreme and one-directional?

Step two: recognize that uncomfortable emotions such as fear, shame, anger or depression can intensity your chronic pain response.

Anticipation, fear and negativity can alter your body’s response to pain. Sometimes just thinking about a certain activity that might exacerbate your pain will “activate the physical pain system,” said Dr. Grinstead. “This way of thinking contributes to the development of emotional reactions that amplifies the pain response. These reactions can make you believe you are trapped in a progressive cycle of disability.”

chronic pain HelpHOPELive fear

Your emotional response to chronic pain could cause you to feel trapped or afraid.

Step three: reach out, connect and engage.

It is very common for individuals with chronic pain to stop participating in activities that have the potential to improve their mood. In such cases, said Dr. Grinstead, it is important to engage in ‘seeking situations’ that can provide distraction from pain and improve your frame of mind and quality of life.

isolate isolation chronic pain HelpHOPELive lonely

You may isolate and stop seeking out pleasurable activities because of chronic pain.

Seeking situations may include social, recreational, spiritual or educational pursuits. Once you can clearly identify problematic thinking and uncomfortable emotions, you can learn how to challenge this thinking, manage your emotions and engage in healthier behaviors.

chronic pain recovery fun HelpHOPELive

It’s healthy to rediscover your favorite activities — and enjoy them again!

You have a right to overcome your suffering.

“People suffering with chronic pain have a right to be free from that suffering,” Dr. Grinstead said. “They also have a responsibility to themselves and their loved ones to seek out appropriate treatment options and take authentic action to implement those options so they can move beyond just surviving to thriving.”

recovery chronic pain first step journey HelpHOPELive relief

You deserve relief from your suffering. Are you ready to take the first step?

Chronic pain patient Marianne noted that awareness is key. “Certainly, it can be easier to tolerate pain with better control of our thoughts,” she said. “I encourage everyone to learn how to be more accepting of that as part of their ‘new normal.’ CBT [cognitive behavioral therapy] is a great tool.”

“So many people, though, think that there is a magic cure to chronic pain, be it a pain medication or surgery or another avenue,” Marianne cautioned. “Lack of interest in daily activities or similar symptoms do not necessarily stem from a lack of effort on the part of a chronic pain sufferer. CBT is a helpful tool, but it’s not a cure. I do all I can to learn to live WITH my pain. I know it will never not be a part of my life.”

How is your chronic pain this week? Are any tools helping you to manage your body and mind more effectively? Check in with us on Facebook or on Twitter. You can learn more about Dr. Grinstead’s chronic pain management approach by visiting his website.