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Tag Archives: MS

Multiple Sclerosis: Overcoming Pain

Real World Health Care continues our series on pain management by speaking with Dawn Ehde, PhD, Department of Rehabilitation Medicine, University of Washington School of Medicine. Dr. Ehde serves as a clinical psychologist and professor at UW. She conducts research evaluating the efficacy of various behavioral, exercise, and pharmacological interventions for chronic pain, depression, and/or fatigue in adults with multiple sclerosis (MS) and other acquired neurological conditions.

Dr. Ehde discusses some of her recent clinical and research work on cognitive-behavioral interventions for MS-related pain.

Living with MS and Pain

Real World Health Care: In 2015, you published an article: Utilization and Patients’ Perceptions of the Effectiveness of Pain Treatments in Multiple Sclerosis. Can you summarize the key results of your study and the implications for patients with MS?

Dawn Ehde, PhD, University of Washington School of Medicine

Dawn Ehde: We conducted this survey to learn more about pain management from the perspective of people living with MS and pain. We found that people with MS and pain try a lot of different treatments to manage pain, but few treatments provide adequate pain relief.

Nonprescription medications such as nonsteroidal anti-inflammatories and physical modalities such as massage were some of the most common methods used. Many use more than one treatment to manage pain. Some of the treatments that individuals rated as most helpful, such as hypnosis, were infrequently used. In fact, we found that very few people surveyed had tried or accessed behavioral pain treatments such as training in mindfulness meditation, cognitive behavioral self-management, or self-hypnosis. This was the case even though there is good evidence that these types of treatments are beneficial to many people with chronic pain, including MS, and have few or no negative side effects. This study highlighted for me the need to improve access to these types of non-pharmacological pain management.

Integrated Care Approach

RWHC: Are you currently involved in any other research relating to pain management in MS patients?

DE: We have several studies in various stages that address pain management in MS. We recently published a study that found that an eight-session telephone-delivered self-management intervention was effective in reducing pain (both its severity and its interference with activities) and fatigue. It also was effective in improving mood, quality of life, and resilience. The benefits were maintained at 6- and 12-month follow ups. Patient satisfaction with the treatment was high as well.

The study I am most excited about is the MS Care study, which is a comparative effectiveness trial that evaluated the benefits of an integrated care approach to pain and depression management in the clinic called “collaborative care.” The MS version, called “MS Care,” aims to improve the quality of pain care in the clinic by adding an MS Care manager to coordinate care, deliver brief behavioral treatments, initiate or adjust other medical treatments, and ensure patients do not slip through the cracks. We also offer patients the choice of getting their care management by phone or in person. Seventy-five percent chose the phone. We found that patients with chronic pain and/or depression randomly assigned to MS Care had significantly improved pain and depression symptoms, including less severe pain, less interference, less disability, and less fatigue. Additional details on the results are available at http://www.uwmscare.org/background.

Opportunities in MS Pain Research

RWHC: What are some of the biggest challenges facing researchers who are studying pain management in MS patients? How can those challenges be overcome?

DE: I actually see a lot of opportunities as an MS pain researcher. The MS community is interested in improving pain management and supporting research in this area. For example, the National MS Society has named pain as one of its research priorities. We also often find people with MS are willing participants in our research, both as participants as well as stakeholders who guide us in our research. For example, we used stakeholders to guide our MS Care study. At times, we have had to work hard to convince potential funders that pain is an issue that warrants funding and study, but that has improved in the time that I’ve been doing research. We have come a long way since I first started in this area, when pain was not always recognized as an important problem deserving attention in MS.

Challenges for MS Clinicians

RWHC: What are some of the biggest challenges facing clinicians who are treating MS patients with pain management problems?

DE: MS presents many different symptoms to manage, and thus both patients and clinicians have a lot to discuss and manage in the typical clinic appointment. One challenge is that pain management is often only one of several issues being addressed. As such, it may be difficult to fully manage a complex issue like chronic pain. I think these challenges may be overcome by rethinking how we approach and deliver pain care. We need to look at harnessing technology — including telehealth technologies — to improve care. We also need to empower patients and the MS community to recognize that pain management is something that requires active self-management and multimodal strategies.

Pain Management Therapies

RWHC: What do you see as the most promising pharmaceutical therapies for treating pain in MS patients? What are the caveats that must be understood by clinicians when prescribing such therapies?

DE: As a psychologist, I’m less able to speak to promising pharmaceutical therapies on the horizon. However, I think there are promising practices for how we deliver pain care, including medications and other rehabilitation interventions. We did manage medications in our MS Care study, and our goal within that was to promote the appropriate and effective use of pain medications and other medications that can benefit pain management, such as some of the antidepressants which have analgesic benefits. We know from our research that too often, patients get started on a treatment, perhaps at a “low dose,” and for whatever reason, they don’t have adequate follow up to adjust, intensify, or change treatment plan. In the MS Care study, we closely and quickly followed patients’ pain and adjusted treatments to optimize their benefits or switched treatments if needed. We also know that physical activity — whether it is physical therapy or encouraging physical activity — benefits people with MS and likely helps with pain management.

RWHC: Do you see a role for non-pharmaceutical pain management therapies in treating pain in patients with MS?

DE: Certainly. This is where I’ve spent most of my energy, not only because I am a psychologist, but also because many people with MS want to use non-pharmacological therapies and strategies. The people with MS I know and our stakeholders are eager to advance our understanding and use of non-pharmacological treatments such as mindfulness meditation, relaxation, and cognitive behavioral coping skills.

Partnering with Patients

RWHC: What initially got you interested in this field? What continues to inspire you?

DE: I have had family and friends with MS, and thus was drawn to learning more about MS. I started out conducting chronic pain research in people where chronic pain such as headaches was the primary problem. When I started working with patients with MS clinically, I was struck by how little we knew about MS pain management and how people with MS pain were not accessing care we knew was helpful in other pain populations.

I’ve been inspired and continue to be inspired by the people with MS whom we’ve partnered with to conduct our research. Our best research has resulted from partnering with people living with MS. They’ve also taught me a lot about resiliency. Although MS can present many challenges like pain, many people with MS and pain live full, meaningful and happy lives.

I also have been fortunate to have training grants from the National MS Society, which have allowed me to train postdoctoral fellows in MS and rehabilitation research. They represent the next generation of clinical researchers in pain and symptom management in MS.

Rebounding from the Impact of Multiple Sclerosis: The Champlin Family’s Story

Editor’s Note: Real World Healthcare will be taking a brief hiatus during the month of August. During this time, we’d like to share with you some of the compelling stories we’ve published about patients facing both medical and financial hardships.

 

Life has not been the same for Dee Champlin, her husband Mark and their two sons since Dee was diagnosed with multiple sclerosis (MS) in 2008. The disease has imperiled Dee’s vision, severely limited her walking and weakened her memory and speech. But she and her family have always found ways to bounce back.

Dee Champlin, receiving treatment for MS

Dee Champlin, receiving treatment for MS

Symptoms such as sensitivity to hot weather, temporary numbness and joint pain had been growing more and more common for Dee beginning in 1988.  But, as with many MS patients, it was eye problems that ultimately led doctors to the MS diagnosis 20 years after her symptoms first appeared.

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A Message from our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

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In one crisis, Dee suddenly began slurring her speech and drooling. Hours later, vision in her left eye started disappearing under what she described as a dark veil. A series of three ophthalmologists assessed the problem before determining she had bleeding inside the eye. This led to MS testing. Four tests, including an MRI and a spinal tap, all came back positive for MS, revealing 14 lesions on her brain at the time.

Mark describes a moment during one of Dee’s hospitalizations when he shifted from a negative attitude to a positive one that still guides the family.

Their challenges had hit him “like a punch to the gut,” he said. “Why us?” he thought. “Everything changed so fast. But then I thought, eventually we are going to get out of this hospital and go home. Things could be so much worse. With all the bad things that are happening to Dee, I don’t want to deal with my own negative attitude.”

That outlook has allowed the Champlins to absorb many changes in their lives as they cope with Dee’s health. Mark had been a self-employed truck driver but sold his semi and changed jobs to be near home after Dee had two health emergencies while he was on the road.

The couple moved from Nebraska to Lockport, N.Y., outside Buffalo, to live closer to their family for more support. Mark began working an overnight shift so he would be available to accompany Dee to medical appointments during the day.

They have both learned that MS produces good days and bad days. And on any given day, they know their plans may change, as Dee’s physical condition may vacillate from morning to afternoon.

Their sons, ages 7 and 2 when Dee’s illness was finally diagnosed, have adapted too. They pitch in at home, help out with laundry and even endure a dreaded chore — washing dishes — when their mom needs it. Their parents are attentive to addressing the boys’ concerns about Dee. They speak openly with them, but still encourage their kids to truly be kids with as normal a life as possible.

The Champlins’ latest rebound was receiving a HealthWell grant that allowed Dee to resume treatment with the only MS medication that has ever made a difference for her. Earlier, after two years of this treatment with daily injections, she received a letter from her insurance provider saying her drug costs had already exceeded the plan’s lifetime maximum. The letter concluded with this line: The cost outweighs the benefits.  “I’ll never forget that as long as I live,” Mark said.

Despite the complex and intensive medical care Dee has been through, the family takes comfort in knowing that Dee’s form of MS is not fatal and that they can continue fighting it. Returning to a previously effective drug should give Dee a better quality of life.

“So many find out they have a disease that gives them literally weeks or months to live,” Mark said. “They don’t get the ‘opportunity’ to push their loved one around in a wheelchair for the next 30 years. Luckily, I do!”

 

Categories: Cost-Savings, General

How HealthWell Foundation’s MS Fund Helped Charlie Get His Life Back on Track

Editor’s Note: Real World Healthcare will be taking a brief hiatus during the month of August. During this time, we’d like to share with you some of the compelling stories we’ve published about patients facing both medical and financial hardships.:

Charlie Barron

Charlie Barron

Charlie Barron was raised to set goals, make plans, get things done. But setting and meeting goals has become exceptionally hard since Charlie, 46, discovered he has multiple sclerosis.

Because of his MS, Charlie is unable to work and therefore struggles to pay for the expensive treatments he has needed since he was diagnosed in 2010, a decade after his symptoms first appeared. He received HealthWell Foundation grants in 2014 and 2015.

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A Note from Our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

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Before his diagnosis, this resident of DeKalb, Ga., had a career as a chef. On the job, he often stood 12-14 hours a day, despite a pins- and-needles sensation in his feet and numbness in his legs that went on for years. For a long time, he considered his physically demanding work the cause of his pain, yet his employer provided no health insurance.

Later, Charlie combined his cooking skills with his interest in fitness to open his own business.  As a personal trainer, he led clients in morning workouts in their homes, then cooked them a healthy breakfast in their kitchens. At that point, he bought himself health insurance.

However, his insurance policies have been unreliable in covering his medications. For instance, his first medication was covered, but when it proved ineffective for him, his insurance company declined to pay for the next prescribed treatment. Moving from private insurance, he obtained Medicare coverage through disability and thought those challenges would change. Recently his doctor recommended adding a second drug to Charlie’s treatment plan which has staved off relapses for the last two years, but the out-of-pocket expense was still unmanageable.

In a note thanking the Foundation for its financial assistance, Charlie described how he felt when he found out the cost of his care.  “Even though I was ready to physically fight to get my life back from MS, my finances were not so ready for battle,” he wrote. “I learned that the medication my doctor prescribed would cost upwards of $1,100 per month. I felt that I had been knocked down before I even had a chance to throw the first punch.”

“The HealthWell Foundation has given me the peace of mind to focus my energy on fighting MS and encouraging others to do the same,” Charlie’s letter said.  He continues learning about MS at a local MS center, takes physical therapy and has participated in activities such as a painting class with others coping with MS.

Social media connects him with additional people with the illness. Hearing about others’ experiences with MS, giving them encouragement or simply offering a kind word to lift their spirits gives Charlie strength.

Benefiting from the supportive care of his wife, brother-in-law and 13-year-old daughter, he urges other people with MS to seek support from family or a strong support group.  For caregivers, he recommends researching MS through the Internet, books or the MS Society to know what to expect.

Not comparing the present with the past is important to him as well. “It’s not about what you used to do, it’s about what you are trying to do now,” Charlie says.

Are you an MS patient like Charlie? How are you coping with the disease and its treatment costs? Let us know in the comments.

 

Rebounding from the Impact of Multiple Sclerosis: The Champlin Family’s Story

Life has not been the same for Dee Champlin, her husband Mark and their two sons since Dee was diagnosed with multiple sclerosis (MS) in 2008. The disease has imperiled Dee’s vision, severely limited her walking and weakened her memory and speech. But she and her family have always found ways to bounce back.

Dee Champlin, receiving treatment for MS

Dee Champlin, receiving treatment for MS

Symptoms such as sensitivity to hot weather, temporary numbness and joint pain had been growing more and more common for Dee beginning in 1988.  But, as with many MS patients, it was eye problems that ultimately led doctors to the MS diagnosis 20 years after her symptoms first appeared.

********************************************************************************

A Message from our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

********************************************************************************

In one crisis, Dee suddenly began slurring her speech and drooling. Hours later, vision in her left eye started disappearing under what she described as a dark veil. A series of three ophthalmologists assessed the problem before determining she had bleeding inside the eye. This led to MS testing. Four tests, including an MRI and a spinal tap, all came back positive for MS, revealing 14 lesions on her brain at the time.

Mark describes a moment during one of Dee’s hospitalizations when he shifted from a negative attitude to a positive one that still guides the family.

Their challenges had hit him “like a punch to the gut,” he said. “Why us?” he thought. “Everything changed so fast. But then I thought, eventually we are going to get out of this hospital and go home. Things could be so much worse. With all the bad things that are happening to Dee, I don’t want to deal with my own negative attitude.”

That outlook has allowed the Champlins to absorb many changes in their lives as they cope with Dee’s health. Mark had been a self-employed truck driver but sold his semi and changed jobs to be near home after Dee had two health emergencies while he was on the road.

The couple moved from Nebraska to Lockport, N.Y., outside Buffalo, to live closer to their family for more support. Mark began working an overnight shift so he would be available to accompany Dee to medical appointments during the day.

They have both learned that MS produces good days and bad days. And on any given day, they know their plans may change, as Dee’s physical condition may vacillate from morning to afternoon.

Their sons, ages 7 and 2 when Dee’s illness was finally diagnosed, have adapted too. They pitch in at home, help out with laundry and even endure a dreaded chore — washing dishes — when their mom needs it. Their parents are attentive to addressing the boys’ concerns about Dee. They speak openly with them, but still encourage their kids to truly be kids with as normal a life as possible.

The Champlins’ latest rebound was receiving a HealthWell grant that allowed Dee to resume treatment with the only MS medication that has ever made a difference for her. Earlier, after two years of this treatment with daily injections, she received a letter from her insurance provider saying her drug costs had already exceeded the plan’s lifetime maximum. The letter concluded with this line: The cost outweighs the benefits.  “I’ll never forget that as long as I live,” Mark said.

Despite the complex and intensive medical care Dee has been through, the family takes comfort in knowing that Dee’s form of MS is not fatal and that they can continue fighting it. Returning to a previously effective drug should give Dee a better quality of life.

“So many find out they have a disease that gives them literally weeks or months to live,” Mark said. “They don’t get the ‘opportunity’ to push their loved one around in a wheelchair for the next 30 years. Luckily, I do!”

 

How HealthWell Foundation’s MS Fund Helped Charlie Get His Life Back on Track

A Note from Our Sponsor: March is National MS Education and Awareness Month. Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

Charlie Barron was raised to set goals, make plans, get things done. But setting and meeting goals has become exceptionally hard since Charlie, 46, discovered he has multiple sclerosis.

Charlie Barron

Charlie Barron

Because of his MS, Charlie is unable to work and therefore struggles to pay for the expensive treatments he has needed since he was diagnosed in 2010, a decade after his symptoms first appeared. He received HealthWell Foundation grants in 2014 and 2015.

Before his diagnosis, this resident of DeKalb, Ga., had a career as a chef. On the job, he often stood 12-14 hours a day, despite a pins- and-needles sensation in his feet and numbness in his legs that went on for years. For a long time, he considered his physically demanding work the cause of his pain, yet his employer provided no health insurance.

Later, Charlie combined his cooking skills with his interest in fitness to open his own business.  As a personal trainer, he led clients in morning workouts in their homes, then cooked them a healthy breakfast in their kitchens. At that point, he bought himself health insurance.

However, his insurance policies have been unreliable in covering his medications. For instance, his first medication was covered, but when it proved ineffective for him, his insurance company declined to pay for the next prescribed treatment. Moving from private insurance, he obtained Medicare coverage through disability and thought those challenges would change. Recently his doctor recommended adding a second drug to Charlie’s treatment plan which has staved off relapses for the last two years, but the out-of-pocket expense was still unmanageable.

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Editor’s Note: RealWorldHealthcare turns 2 today! To help us celebrate our anniversary, we think there’s no better gift than a donation to our sponsor, the HealthWell Foundation. Learn how you can help support patients in need. Click here.

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In a note thanking the Foundation for its financial assistance, Charlie described how he felt when he found out the cost of his care.  “Even though I was ready to physically fight to get my life back from MS, my finances were not so ready for battle,” he wrote. “I learned that the medication my doctor prescribed would cost upwards of $1,100 per month. I felt that I had been knocked down before I even had a chance to throw the first punch.”

“The HealthWell Foundation has given me the peace of mind to focus my energy on fighting MS and encouraging others to do the same,” Charlie’s letter said.  He continues learning about MS at a local MS center, takes physical therapy and has participated in activities such as a painting class with others coping with MS.

Social media connects him with additional people with the illness. Hearing about others’ experiences with MS, giving them encouragement or simply offering a kind word to lift their spirits gives Charlie strength.

Benefiting from the supportive care of his wife, brother-in-law and 13-year-old daughter, he urges other people with MS to seek support from family or a strong support group.  For caregivers, he recommends researching MS through the Internet, books or the MS Society to know what to expect.

Not comparing the present with the past is important to him as well. “It’s not about what you used to do, it’s about what you are trying to do now,” Charlie says.

Are you an MS patient like Charlie? How are you coping with the disease and its treatment costs? Let us know in the comments.

 

Categories: Cost-Savings, General

Speaking with: Ann Romney

Editor’s Note: This week is MS Awareness Week and people everywhere are creating connections stronger than the ones MS destroys. During this special week, take action to help others learn more about MS and what they can do to make a difference. In 1998, Ann Romney, wife of American businessman and politician Mitt Romney, was diagnosed with MS. Here, she shares her experiences as someone living with MS.

Real World Healthcare: How did you first learn you had MS?

Ann Romney

Ann Romney

Ann Romney: The year was 1998, Mitt and I were living in Boston. We had five sons, mostly grown with our youngest son still living at home as a senior in high school. The symptoms came on slowly at first, I would feel dizzy or have a hard time holding a glass. Then they worsened, I was tired, my right leg was numb, I was losing my balance. I explained my symptoms to my brother Jim, a doctor, and he suggested I see a neurologist. Mitt accompanied me to the doctor to find out the results of testing, we learned together I had MS.

RWHC: What were some of your biggest concerns when you were first diagnosed with MS? How did the time and energy required to take care of your own health impact your family?

AR: When first diagnosed with MS, I was very frightened and depressed. I had many commitments, to my family, church and community. My biggest concern was that I would not be able to keep up with my responsibilities in and outside of the home much less take care of my health. The disease was progressing rapidly and I had no idea if it would stop or how debilitated I would become.

I was blessed to have Mitt by my side. He didn’t miss a beat and immediately picked up the slack at home. We ate a lot of peanut butter and honey sandwiches (Mitt’s specialty) during that time but what really mattered was the love and support I received from Mitt and my family.

RWHC: Tell us about your earliest days with the disease—the process of being diagnosed and starting treatments—did you have any difficulties accessing the appropriate physicians and/or treatments?

AR: When I was diagnosed in the late 90s, there weren’t many treatments for MS. I was told to go home and come back when the disease got really bad. That was a common response to an MS diagnosis 20 years ago. Then a friend told me about a neurologist who took a different approach to treating MS, Dr. Howard Weiner at Brigham and Women’s Hospital.  The first time I saw Dr. Weiner, he told me he would be aggressive in treating the disease – I began intravenous therapy that day. 

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A note from our sponsor: Are you, or is someone you love, an MS patient on Medicare in need of financial assistance? Click here to visit The HealthWell Foundation’s eligibility page.

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RWHC: I understand that you have credited a mixture of mainstream and alternative treatments with helping to manage your disease. Explain how that is so.

AR: I feel best when I am properly rested, eating healthy, whole foods and when I incorporate exercise into my daily routine. I try to do yoga or Pilates several times a week as well as ride horses, all have been extremely helpful in developing my core. When newly diagnosed, I tried several activities to boost my energy including reflexology and acupuncture. Over time, these methods helped to improve my energy levels.

RWHC: What was the turning point or catalyst that changed you from an MS patient to an MS activist?

AR: During the campaign, I was blessed to have the opportunity to travel the country and hear from Americans daily. At many of the events I attended, people diagnosed with neurologic diseases would come out to support me – not because we shared political ideology but because we had a disease in common. They would often wait standing in the hot sun for hours. By the time I would reach them, they would be tired and weak – sometimes collapsing. I can’t tell you what it meant to me – day after day – having those people show up for me. After the campaign ended, I would often find myself thinking of those people and wonder how I might return the favor. How I might show up for them.

While talking with Dr. Weiner at one of my annual visits, he told me about the research he was doing in the MS space and that it was affecting research in other neurologic diseases. I asked him what was needed to further the research, he said awareness and funding. That’s the moment I knew I could be helpful. Together with Brigham and Women’s Hospital, we opened the Ann Romney Center for Neurologic Diseases.

RWHC: Explain the type of work you’re doing to establish the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital. What is your goal and the goal of the Center?

AR: Through the Ann Romney Center for Neurologic Diseases, Brigham and Women’s Hospital we will convene and lead a global collaboration in medical research to accelerate treatment, prevention and cures for five of the world’s most complex and devastating neurologic diseases. Together, we will inspire hope and empower those confronting multiple sclerosis (MS), Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors.

I have set a personal goal to raise 50 million dollars in support of the Ann Romney Center. My mission is to enable the doctors at the Ann Romney Center to find cures for neurologic diseases so that the next generation does not have to suffer as so many are today.

RWHC: Many MS patients are not just grappling with the health effects of the disease, they are grappling with the financial effects as well. For some, it may come down to decisions between paying their monthly mortgage or paying for their monthly medications. Fortunately, there are charitable patient assistance programs like the HealthWell Foundation, which provide financial relief—even when the patients have insurance, the costs of the copays alone can create financial hardship. How important do you think programs like this are in terms of helping patients manage their disease?

AR: Being diagnosed with MS was one of the scariest moments of my life—for me and for my family. But we were fortunate to have access to great care, treatment and therapy. I am grateful for programs such as The HealthWell Foundation that work to remove some of the financial burden of treatment and allow the patient to focus solely on their treatment and recovery.

RWHC: What do you want MS patients and their professional and family caregivers to know about MS?

AR: Collectively, MS, Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors affect more than 50 million people worldwide. These neurologic diseases are among the most devastating diseases of our time.

In my darkest hour, Dr. Weiner was a beacon of hope. I was desperately sick and feeling very alone with my illness. Life felt out of control and I didn’t know how to make it better. I was losing hope. Dr. Weiner took me by the hand and said, “You’re going to be okay. Come with me. We’re going to take care of you.” Giving my disease over to Dr. Weiner allowed me to stop worrying and instead focus on getting better. And after a long battle with MS under the care of Dr. Weiner, I am in remission. Dr. Weiner and the incredible folks at Brigham and Women’s have created a center that is improving lives every single day. I am humbled that my name is associated with this work, and through the Ann Romney Center for Neurological Diseases, I want to be that beacon of hope to those suffering, just as Dr. Weiner was for me.

 

 

How New Apps and Technology Create a New Central Nervous System for MS Patients: A Look at the Current State of Online Disease Management

By Vanessa Merta, Science Blogger

RWHC Writer Pic-2

Vanessa Merta

With over two million people suffering from multiple sclerosis and a cure for the debilitating autoimmune disease remaining illusive, patients are using new technologies to improve how they manage the disease. By leveraging web-based technologies and smart phones, patients have new weapons to improve their symptom management by collaborating with other patients and access care more easily.

Websites such as www.PatientsLikeMe.com play a supportive role by helping patients understand and manage their disease, and track potential outcomes. Patients use the website to connect with other patients to track symptoms, relapses, and medication results. By entering these data, patients not only learn more about managing their illness, they also help scientists and doctors use the data for research.

In a recent TedxTalk, PatientsLikeMe President, Ben Heywood, spoke of the growing MS community, currently at over 25,000 active users on the site. “You can see what it’s like to have MS,” said Mr. Heywood. “Symptoms in real-time of thousands and thousands of patients [are captured],” analyzed for trends, and help inform researchers in ways that may expedite a cure.

These widespread patient histories may prove to be helpful to drug developers because they can see what symptoms are not well managed, in the hopes of creating a goal for a future drug. With the knowledge of medication success rates, researchers can see if any drugs have the potential to be improved, or if they should be forgotten all together. Before websites like PatientsLikeMe.com, obtaining this kind of information was nearly impossible.

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Want to help those suffering with MS? Consider donating to the HealthWell Foundation, and note that you wish for your donation to go to the MS Fund. Click here to learn how to donate to patients in need. ************************************************************************************************

When patients are on the go and don’t have access to a computer, smart phone applications offer welcome help. Patients have their entire health history with them at all times with apps such as the MS Association of America’s Multiple Sclerosis Self-Care Manager. Patients track mood and symptoms in a journal, and record whether or not they’ve taken their medications on schedule. In emergency situations, MS Self-Care Manager helps find physicians or hospitals with a Google-Map powered locator. The app makes doctor’s appointments more productive due to immediate access to lab results, and a record of all symptoms since the patient’s last visit.

Medical technology is trying to lessen the burden that an MS diagnosis may bring. Resources for patients are continuing to improve with the development of smart phone apps and online sites where patients can collaborate.

Technology has created its own version of a central nervous system by building a patient community with dynamic connectivity. Helping patients to manage symptoms by improving hand-held technology has become a reality for tens of thousands of MS patients. Until we have a cure or advances in medicine, these simple programs offer real benefits.

Tell us what you think about symptom tracking and online disease management. Have you put any of these products to good use?

Categories: General

Learning About Multiple Sclerosis (MS) on the Internet: What Works and What Doesn’t?

If you have multiple sclerosis there is a lot that doesn’t work. And what isn’t working is both unpredictable and constantly changing. MS affects everyone differently. And it’s a very wide range of different. While one person may have sensory issues (perhaps a leg is always numb), another person may have movement issues (like muscle weakness or spasticity), and yet another person may be unable to leave bed. You may even know someone who has MS and not realize it. That’s how variable this disease can be.

aghs web

Amy Gurowitz

It’s because of this variability that learning about the disease can be really tough. As you can imagine, learning about what may never happen to you can create tons of anxiety, and this emotional state is not conducive to learning and empowerment.

What works and what doesn’t when trying to learn about MS on the Internet is like a moving target. What a person needs to know changes as the disease progresses over time. And while anxiety is common for the newly diagnosed, even people who have been living with MS for many years go through changes in both the everyday symptoms and the course of the disease.

It’s also important that those who care about a person with MS know what is happening to their loved one so that they can be supportive and understand what he/she is going through. It’s hard enough to live with this disease; to be doubted brings the stress to a whole new level.

The Internet has helped people who are affected by MS in many different ways. Through social networking and the most current information about the disease, the online MS community is an active and interactive space that can help even those who are living with very limited mobility to become informed e-patients and advocate for themselves. And that’s very important.

But the existing websites (and there are more MS sites than there are noises in an MRI tube J) don’t go as far as they can in helping people with MS learn all that they need to. The sites that provide information can’t meet an e-patient’s individual learning needs or consider the emotional state they are likely experiencing. It’s no secret that learning about MS (in a meaningful way) is critical while coping with MS. It’s good to find control – considering MS is all about losing control – where you can.

When I was diagnosed with MS in 1988, it was long before the Internet was available or the FDA had approved any disease-modifying drugs. I was flailing. It was the Stone Age in isolation compared to the connectivity we have today, and I struggled to learn about my version of MS using printed materials and support groups, both of which triggered so much anxiety and fear it was, in and of itself, immobilizing. I vowed to avoid information and just wait and see how my MS would play out. Looking back, it’s clear that this was my only choice at the time.

Then the Internet came to be, and everything changed. Well, not everything.

In 2006, I got my Masters in educational design and studied cognitive science and learning theory. I had an epiphany. There is a way to use the existing Internet technology to make for a personalized, self-directed learning experience that greatly reduces anxiety.

That’s when I founded MSSoftServe, a non-profit organization that aims to revolutionize how patients learn about their diseases on the Internet. The vision is that people with MS will be able to create a web space that is all their own, ensuring that their emotional and intellectual needs will be considered as an individual person, rather than taking the cookie cutter approach that current information sites offer. The site will be personalized so that people with MS will be able to learn about their unique version of MS their way. By establishing preferences, people will be able to control the information they receive. It will be a site like no other and, once produced, it will take full advantage of the capabilities the Internet offers.

Today, I know that change is possible for the 350,000+ Americans who have been diagnosed with MS and the 200+ individuals who are newly diagnosed every week. There is no reason that people who have a disease like MS should feel the same way I did when I was diagnosed 26 years ago. MSSoftServe will give patients what they truly need, not what someone else thinks they do.

Bringing MSSoftServe to life is no small task. Meeting the diverse needs of the MS population requires more content production and more complex site design than other websites. Through www.mssoftserve.org, we are spreading the word about the initiative, raising the required funding, and reaching out to the MS community to find out how to meet their learning needs so that MSSoftServe can help them cope with their version of the disease. Please take a moment to check out the site to learn more about this effort and spread the word to those who will benefit.

Have you or a loved one been diagnosed with MS or any other chronic disease? What would you want to learn on a site that could be customized for you?

Share your insights in the comments section.

Categories: General

Our Top 4 Most ‘Liked’ Health Care Stories

This week is Real World Health Care’s one-year anniversary. Over the past year, we showcased solutions that are proven to lower costs, increase access, and provide more patient-centered care. In celebration of this milestone, we are sharing the favorite posts as measured by Facebook ‘likes’ from our readers, who have visited the blog over 10,000 times.

 

#4 – Keeping Boston Strong: How Disaster Training at Osteopathic Medical School Helped Save Lives

In May, former RWHC editor Paul DeMiglio told the story of Dr. Danielle Deines’ emergency response to the Boston Marathon bombing. Dr. Deines’ education at the Edward Via College of Osteopathic Medicine – Virginia Campus (VCOM) required her to participate in a two-day, mandatory training curriculum on Bioterrorism and Disaster Response Program, which immersed her in real-life disaster training, field exercises and specialized courses.

(Photo courtesy of VCOM)

(Photo courtesy of VCOM)

The day of the bombing, after crossing the finish line, Dr. Deines found herself triaging runners in medical tents to make room for the victims. “The back corner became the most severe triage area, nearest the entrance where the ambulances were arriving,” she said. “I saw victims with traumatic amputations of the lower extremities, legs that had partially severed or had shrapnel embedded, and clothing and shoes literally blown off of victims’ bodies.”

Read the post: http://www.realworldhealthcare.org/2013/05/keeping-boston-strong-how-disaster-training-at-osteopathic-medical-school-helped-save-lives/

 

#3 – Making Life Easier for Patients and Loved Ones: Meet MyHealthTeams

In April, Eric Peacock, Co-founder and CEO of MyHealthTeams, contributed a guest blog about the need for social networks for communities of people living with chronic conditions. These networks allow patients to “share recommendations of local providers, openly discuss daily triumphs and issues, share tips and advice, and gain access to local services,” he wrote.

“Sharing with people who are in your shoes offers a sense of community that can’t be found elsewhere – these are people who know the language of your condition; they understand the daily frustrations and the small triumphs that can mean so much,” he added.

Read the post: http://www.realworldhealthcare.org/2013/04/making-life-easier-for-patients-and-loved-ones-meet-myhealthteams/

 

#2 – When the Health Care Blogger Becomes the Cancer Patient

In August, even as she was still undergoing daily radiation treatments, contributor Linda Barlow shared her personal story of being diagnosed with cancer and the slew of medical bills she faced even though she had insurance.

Linda Barlow

Linda Barlow

“While these out of pocket costs are certainly hard to swallow – I can think of a hundred other things I’d rather spend my money on – for my family, they are doable,” she wrote. “We won’t have to skip a mortgage payment or a utility bill. We won’t have to dip into a child’s college tuition fund. We certainly won’t have to worry about having enough money for food. But I know – from my work on this blog and with its main sponsor, the HealthWell Foundation – that many families living with cancer aren’t so lucky.”

Read the post: http://www.realworldhealthcare.org/2013/08/when-the-health-care-blogger-becomes-the-cancer-patient/

 

#1 – What If You Want Politicians to Get Moving But You Can’t Move?

Neil Cavuto

Neil Cavuto

Last week, Neil Cavuto, Senior Vice President and Anchor, Fox News and Fox Business, contributed a moving guest post about his triumphs over multiple sclerosis (MS) for MS Awareness Week. His deeply personal blog inspired resounding praise in the comments section and 1,300 Facebook ‘likes’.

“If I can pass along any advice at all, it is…to simply never accept a prognosis as is,” he wrote. “Fight it. Challenge it. ‘Will’ yourself over it. Many doctors say it’s a naïve approach to the disease, but attitude counts a lot for me with MS, as it did for me two decades ago when I was battling advanced Hodgkin’s Disease. Then, as now, it was about one day at a time, and staying optimistic and positive all the time.”

Read the post: http://www.realworldhealthcare.org/2014/03/ms-awareness-week/

 

If you would like to suggest a topic, contribute a guest post, or learn more about short-term co-sponsorship opportunities, please contact us at dsheon@WHITECOATstrategies.com. As a blog currently sponsored solely by the HealthWell Foundation, an independent non-profit providing nationwide financial assistance to insured Americans with high out-of-pocket medication expenses, co-sponsorship helps us keep Real World Health Care alive and well as a resource for journalists, health care professionals, policymakers, and patients. Plus, co-sponsorship will increase your organization’s visibility among thought leaders in the health care sphere.

Do you have a favorite Real World Health Care post? Is there something you’d like to see more of? Post to the comments section or tweet at us at @RWHCblog.

What If You Want Politicians to Get Moving But You Can’t Move?

Editor’s Note: This MS Awareness Week, we are pleased to feature a guest post by Neil Cavuto, Senior Vice President and Anchor, Fox News and Fox Business. Mr. Cavuto is an inspiration to many people living with multiple sclerosis, and he shares his perspectives on triumphing over the disease.

Neil Cavuto

Neil Cavuto

Perhaps the most maddening thing about having MS when you’re a TV anchor is that some days it hits you when you’re on TV and you’re “trying to anchor.” You’re trying to be on top of your game, but your body is playing games with you. That’s when “anchor” takes on a whole new meaning…not what I am on television, but the dead weight I’ve become in reality.

It’s at those times when I can’t move, that I often feel moved to explain to viewers, “it’s not me, it’s the MS.” It’s not me forgetting that guest’s name, it’s an exacerbation hitting my brain and causing me to forget that guest’s name. It’s at those times I lose my train of thought, that I question how thoughtless MS is. That’s when this illness hits home – when I just want to hit back, but can’t. This MS Awareness Week, it’s about reminding folks what it feels like to be…weak…to be vulnerable, to simply be unable to do the simplest things.

I can’t tell you the number of people who stop me and ask how I get through such moments. Fortunately, they’re moments, I answer. But sadly, sometimes very long moments. The one remarkable aspect of MS is how it quickly schools its victims to adapt…or perish. We either have to adjust to its wild, sometimes vicious swings, or face a life constantly succumbing to each and every progressive or remittent reminder.

That’s easier said than done, of course, but after more than 15 years of dealing with this, for me, it’s come to this: mind over matter. No matter what’s going on with your body, tell your brain it doesn’t matter. For me, the regimen for dealing with MS has been pretty much the same – once-a-week self-injections of Avonex, Biogen’s great elixir for slowing the progressive attacks, or at least, limiting their severity – over time.

But that doesn’t mean things don’t come up, and problems and complications still develop. For me, they’ve been everything from days-long blind spots that require me to “wing” my news copy on air…to allowing more time to make it to the news set, because I simply cannot walk.  I long ago concluded I cannot control these attacks – neither their frequency nor severity. But I “can” control how I react to them. That’s why I always try adapting and reasoning in my head that if the left eye goes out, coordinate better use of the right eye. The left arm weakens, get fairly competent enough with the right arm. These adjustments aren’t easy or fast but they certainly are now routine. That’s good for me, but it was hit and miss for years, perfecting this behavior for me.

I’m better at it now, but my nickel-and-dime advice for MS sufferers everywhere is, it’s a day at a time now…always. Part of doing what I do is understanding how I can keep making my body do it, even when it’s not cooperating. I mentioned how I often memorize copy and whole segments of my show in my head, for those moments I lose my vision. But there’s much more to it than that. After all, that’s fairly easy when I’m the one writing my shows…I kind of remember what I said. But it’s also about maintaining my physical energy, and that means denying the very progression of the disease itself.

Each and every morning, no matter what, I exercise my legs – certainly no Olympian workout – but on a treadmill or stationary bike, doing what I can to keep these legs going, even when they’re not cooperating. I’m forever panicked that someday they’ll simply fail, and then I’ll be a cripple. I fear that day is coming. Some neurologists warn me that given the progressive nature of my MS, it “will” be coming. But I fight like hell to push that day off. If I can pass along any advice at all, it is simply that – to simply never accept a prognosis as is. Fight it. Challenge it. “Will” yourself over it. Many doctors say it’s a naïve approach to the disease, but attitude counts a lot for me with MS, as it did for me two decades ago when I was battling advanced Hodgkin’s Disease. Then, as now, it was about one day at a time, and staying optimistic and positive all the time.

One of the things I’ve discovered about people dealing with illnesses is that sometimes they think they’re the only ones dealing with pain. There’s a natural self-absorption to that and to them, and when you throw in a guy who wears makeup and counts on viewers liking him, there’s a damn-near “fixation” to it. That’s not to say MS patients shouldn’t ask for support and understanding, they just shouldn’t demand it. As I’ve said many, many times, on the air and off, it’s not your spouse’s fault you have MS, or your kids’ fault, or your boss’s fault, or your colleagues’ fault. We may be surprised the world isn’t always understanding or caring or nurturing. But I’ve discovered all of us in life, bear some cross in life. Some are obvious. Some aren’t. But all do, if not at the time we literally first bump or trip into them…eventually.

I’ve become very philosophical with this disease, and concluded (heresy for a media personality) that it’s not always about me. It’s not always about us. It’s not always about our pain, or exacerbation, or what we’re forgetting, or what muscles are failing. I try to tell my kids we are the sum of our challenges, not necessarily the sum of our successes. I believe we are defined in life, not by the things that go well in our lives, but precisely by how we handle the things that do not.

I want that to be our greatest awareness this week – that we are not weak, that we are not victims, that we are not handicapped. We are challenged, yes. But we are up to the challenge. It might sound crazy to say that I’m grateful for MS, and grateful as well for having had cancer…but I am, and here’s why. It’s made me a better person, a better father, and a better husband. Now, I don’t know if viewers hearing my constantly compromised scratchy voice agree it’s made me a better anchor on TV. But “I” know it’s made me a more complete soul…just appreciating the fragility of life. That’s why I never take it for granted and have a healthy respect for just appreciating your health…compromised as it is. Because it sure beats…the alternative.

Make this a meaningful MS Awareness Week by promising never to stop seeing the strength that comes from being…weak.

Categories: General