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My Journey with Multiple Sclerosis

By: Alyssa Meller, Chief Operating Officer, National Rural Health Resource Center

In late February 2009, my feet went numb. The numbness began as quarter sized spots on the bottom of my feet. I remember this clearly, as it was my birthday and a couple of friends and I were getting ready to go out dancing. By the end of that night, both feet were completely numb. They felt like heavy, heavy blocks. A week later, the numbness crept up to my waist and I needed help walking. In March, 2009, at 33 years old, I was diagnosed with Multiple Sclerosis (MS). That was one of the most terrifying moments of my life. 

Multiple Sclerosis is defined as a demyelinating disease, in which the immune system attacks the myelin sheath (the protective cover) of the spinal cord and grey matter of the brain. This causes communication difficulties between the brain and the rest of the body. It can cause numbness or tingling, weakness in the limbs, vision changes, lack of coordination or unsteady gait, fatigue, and dizziness. The cause of this degeneration is unknown, although many researchers believe MS is an autoimmune disease. There is no definitive test that will diagnose MS, nor is there a known cure for this disease. According to the Multiple Sclerosis Foundation, there are currently between 350,000 and 500,000 people in the US who have been diagnosed with MS. The most common type of MS diagnosed annually is relapsing-remitting MS (RRMS). This is the type of MS I was diagnosed with in 2009.

There is no doubt about it, MS is scary. One of my first thoughts I remember having was, “I am going to be in a wheelchair by the time I’m 40.” That negative attitude is how I chose to live my first few years with MS. I was inactive, overweight and making some terrible lifestyle choices. Now I had a something to blame it on.

I have MS.

This is the reason why I am so tired, why I can’t move, a good excuse to eat what I want when I want because at the end it just really won’t matter. I am going to be disabled by the time I’m 40, dependent on my husband to get me around, so why should I bother? This is what I thought, and because of those thoughts I used MS as an excuse to further some already destructive behavior.

MS is unfair. It is also life-changing. I have learned that yes, there can be -and are - physical limitations to this disease. However, I learned physical limitations were not my biggest challenge. My thinking was.

I imposed the limits by thinking and then believing MS was the controller, IT was the boss, IT won’t let me.

That was farthest from the truth.

IT was me.

So I started to move.

I call it my “Move More Campaign.” It began slowly, very slowly. I started to move more by always taking the stairs. It wasn’t easy. Some days it still isn’t easy. I often have to pause and ‘wait’ for my legs to catch up with me. I have to hold the hand railing so when - not if - I trip, I don’t fall. I make sure to move in a way that is smart and safe.

I folded laundry on the first floor of the house and took each person’s clothing up to their room one at a time. I learned how to mow the lawn. My dad always said, that was what the boys were for. Well, not anymore! I began walking for additional movement. I just kept adding more movement. I purposely don’t call it exercise. It is movement, pure and simple. I ask myself, what can I do in this moment to move more? And then I do it.

By summer of 2012, I decided I wanted a new movement challenge. I harbored an inkling to train and run a 5k race that fall. I shared this thought during an appointment with my neurologist. He looked me in the eye and said, “You are not limited in anything you can do.” That statement had a profound effect on me. I teared up. Those simple words helped empower me to go forward with this new goal. The power and influence providers have on a person’s motivation is enormous. 

With support from family, friends and providers, I was off and running. Slow, yes, but I did it. My training was simple. I’d set a goal that I would run for 10 minutes and then walk up to 30 minutes. As those 10 minute increments became easier, I would gradually increase that time by five minutes until I was running for an entire 30 minutes. I did this three to four times a week. My goal was to run the race in 30 minutes. I completed it in 29 minutes and 44 seconds!

MS is life-changing… in a good way! Since October 2012, I have run many races, including three half-marathons. Moving more helps me beat through the tiredness, the lows and the anxiety of the current moment and the future. It resets my brain, helps me focus and move forward into a better moment.  

There are days when I think or even shout out loud, “I can’t do this anymore. I’m sick of trying. Why do I even bother?” After one such outburst my nine year old son reminded me to stay strong. “Mama, I’ve been thinking about this. If you keep saying you can’t do something, you never will. If you say ‘I can do it’, you always will.”

Sometimes it is my daily or even hourly mindfulness and dedication to showing MS who’s boss or sometimes the reminder comes from my kids, but as I begin training for my fourth half marathon, I am reminded that MS doesn’t need to stand for Multiple Sclerosis, but to me it stands for Made Strong ™.

March celebrates and focuses on MS awareness. I use the word celebrates and I’m not sure if this is the right word, but for me it fits with what I’ve accomplished and continue to celebrate each day. We need more than a month. We need MS awareness at our forefront every day. As people with MS learn to physically and mentally cope with this terrible disease, I hope that health care providers will support and encourage us as we learn to cope and more importantly how we choose to LIVE each moment. I want more providers to be like mine  and not to focus on, “What’s the matter with you?” but ask ”What matters most to you?”.

I recently celebrated the 11^th anniversary of my 29^th birthday. I am almost as fit now, 40 with two kids, as I was playing soccer in college…. Almost. Thinking back to my initial belief that I would be disabled by 40, I smile. This is one instance I am ok with being wrong. In fact, I cheer that I was wrong! 

Aging in Place in Rural America

By: Terry Hill, Executive Director, Rural Health Innovations

For older adults living in rural communities in the United States, the challenge of living independently as long as possible is magnified. Long distances, lack of transportation, as well as limited senior housing options, create barriers that too often find rural seniors in housing options that do not maximize their independence, and sometimes separate them from their families. Ironically, people who live in rural America and have strong independent values, often find themselves in highly dependent situations in the final stages of their lives.

Fortunately for rural seniors, two major trends are transforming the health care industry in this country, and will have a major impact on the challenges described above. The first major trend is the transformation of the U.S. health reimbursement system from “pay for volume” to “pay for value”. The federal government’s Medicare program, state Medicaid programs, and increasingly private insurance companies are now providing incentives to keep seniors in their homes as long as possible. In Medicare’s Accountable Care Organizations (ACOs), for example, specific groups of health care providers (usually hospitals and/or clinics) are accountable for the cost and comprehensive care of large groups of Medicare recipients. If the providers can provide comprehensive care to the recipients with higher overall quality and satisfaction, at less total cost than the previous year, they gain bonuses based on this documented value.  

Given the ACO model, which has been copied by many state Medicaid programs, helping keep people in their homes as long as possible has become an important business objective. The home-based seniors and their families tend to be happier, the cost is substantially less, and the quality and safety can be provided with the use of a second major trend: technology.
   
The Lutheran Home Association (THLA), located in Belle Plaine, Minnesota, south of the Twin Cities, has more than seven years of experience using health monitoring technology to keep seniors and chronically ill patients in the least restrictive housing settings. Their federal and state demonstration projects include “Advancing Technology Resources and Assessment for Alzheimer’s and Dementia”, as well as “Live Well at Home”. They are also partnering with the University of Minnesota to use non-invasive, sensor based technology to help family caregivers monitor the daily functions of rural persons with Alzheimer’s disease or related dementia (ADRD). The technology platform they’re using includes a combination of remote sensors located in key areas of a patient’s home, (e.g. bed, bathroom, kitchen, living room) that can communicate patient activity and other information to a family caregiver and a care professional. This proactive intervention model is designed to monitor and prevent negative events, such as falls or wandering, and will allow these individuals to stay in their homes as long as possible.

According to Catherine Berghoff, Lutheran Home Association’s Director of Development, a current state funded initiative will allow the Association to build a comprehensive health technology resource center, thereby enabling other service providers and family caregivers to access the knowledge, processes and technology that has been produced by the demonstration projects. This web-based center is scheduled to be completed in 2016.

Other types of mobile health monitoring technology is predicted to be used widely in the near future. Health care providers are already capable of monitoring the vital signs of patients remotely, and technology that can be worn by or attached to patients, will provide daily readings of blood pressure, blood sugar, and a variety of other patient information to health care providers in rural clinics and hospitals. This ongoing monitoring of medical conditions combined with the sensor technology will enable rural seniors and chronically ill patients to live safely in place as long as possible.

In summary, rural seniors have historically faced formidable challenges to staying in their homes when sick or chronically ill. Two major trends will effectively overcome many of these challenges: 1) rapidly changing value-based health care reimbursement, which will financially reward health care providers to more effectively support home-based services; and, 2) the growing use of health monitoring technology, that will enable the remote monitoring of both patient activity and patient vital signs. This is all good news for rural seniors, for their families and for their health care providers.

Grateful

Scientists have begun to chart a course of research aimed at understanding gratitude and the effects on physical and emotional health. They’re finding that people who practice gratitude consistently report a host of benefits:

• Stronger immune systems and lower blood pressure
• Improved resilience
• Higher levels of positive emotions
• More joy, optimism, and happiness
• Acting with more generosity and compassion
• Better quality and quantity of sleep
• Fewer aches and pains
• More likely to take care of their health

At The Center, we have so much to be grateful for every day. 

Kami Norland

“I am grateful for the innovation, inspiration and compassion of the Accountable Communities for Health teams across Minnesota.”

Bethany Adams

“I am grateful for the opportunity to help people who work hard to provide access to quality health care in their communities.”

Angie LaFlamme

“I am grateful for rural providers who are committed to providing quality care to their patients in this ever-changing and challenging health care environment.”

Jere-lyn Fern

“I am grateful for the opportunities that I have had here at the Center and meeting many wonderful people from all the State Offices of Rural Health that we work with.”

Tracy Morton

“I am grateful for 45 states, 1,333 critical access hospitals, thousands of rural communities and countless lives improved with quality care.”

Nicole Clement

“I am grateful to the Federal Office of Rural Health Policy for the dedication that The Center shares with them to the viability of rural hospitals and access to

quality health care.”

Bridget Hart

“I am grateful to witness and be a part of innovation and collaboration that happens every day at The Center!”

Alyssa Meller

“I am grateful for the opportunity to learn from rural communities all over the nation in how they are working together to better the health of their communities.“

Cassandra Rockers

“I am grateful for being able to work with wonderful people both in rural communities and in Duluth!”

Terry Hill

“I am grateful that  our Center has a role in improving the health and wellbeing of rural people across the United States.”

Kim Nordin

“I am grateful for the people who live in rural communities with pride and love. I am inspired by their resilience, creativity and passion for their small towns, reservations and communities!

Joe Wivoda

“I am grateful for the Network Development grantees, especially those that are focusing on behavioral health.”

Debra Laine

“I am grateful for the Network teams who are pioneering a way to change their communities.”

Sally Buck

“I am grateful for the 45 State Flex Coordinators committed to supporting critical access hospitals by improving quality, financial stability and community health.”

Rhonda Barcus

“I am grateful for all the caring folks in health care that help people every day in rural communities, like the one my mom and sister live in.”

Sarah Brinkman

“I am grateful for the 1,600+ small rural hospitals dedicated to making improvements to meet the needs of their communities.”

Phil Birk
“I am grateful for the emergency response volunteers that are first responders in the Iron Range communities where my immediate family lives. I’m also grateful that there are hospitals in Aurora and Ely, Minnesota because Duluth is too far away if my family needs emergency care.”

Becky Gourde
“I am grateful that so many health care organizations are collaborating to improve outcomes in rural areas.”

Memories from a Veteran: Terry Hill

It's Veterans Day 2015, and I'm compelled to begin this blog before it becomes old news. I write this as a veteran of the Viet Nam War, and since it’s a day for remembering, I'll begin by sharing a few of my memories of that war.

Opening memory: The fear begins as I board the plane at Travis Air Force Base, along with 220 other soldiers. We fly in almost absolute silence to the Republic of Viet Nam. We are all scared and apprehensive that we'll never see our families again; that we will come back in a box, or even worse, that we will return gravely wounded and become our family's burden for the remainder of our lives. For much of the ensuing year, the fear is never far away, and occasionally it erupts into sheer terror.

Memory 2:  One month later, I'm deep in the Viet Nam jungle with my First Cavalry colleagues, and after a twenty minute firefight, we cautiously creep forward to examine the results of our fire. A wounded Viet Cong soldier is gasping for air, and his makeshift uniform is slowly turning dark red. I stare into his eyes. They blink several times, and I can see the intense fear of what will come next. Then they stare ahead lifelessly. This is not the body prepared by a mortician for final viewing; this is a body twisted in agony, very much like my own. This boy too had parents and people who loved him, and they will deeply mourn his passing. To paraphrase both Marlon Brando in, "Apocalypse Now", and Joseph Conrad in “Heart of Darkness", this is the "horror".

Memory 3:  It's months later, and back at the fire base near Phouc Vinh, my friend, Rusty, is approaching with a paper bag in hand. Rusty is in his second tour in country and has seen more than 18 months of combat.  Although only a corporal, Rusty is our squad's informal leader; an older guy we can depend on when it matters most. Rusty’s eyes seem to bulge from his face, and as he gets near, he begins raving that he has found the secret of life, the secret that will get us out of this awful war. The answer, he alleges, is in his paper bag. He opens it slowly and I peer inside, recognizing my own face in the mirror that lies at the bottom of the bag. Hours later, Rusty is escorted aboard a helicopter to begin a long journey to a mental health facility in Japan, and I will never see him again. Two months later, another friend has a mental break while waiting to leave country, and makes a similar trip to Japan.

Final memory:  I arrive back at Travis Air Force Base, and process back into civilian life. The previous day, our base was rocketed by the enemy, and later today I'll walk the streets of San Francisco. I'm elated to be safe and back at home, but the yearlong experience will haunt me, and a post traumatic illness will plague me for several years to come.

Looking back today, I see that the entire wartime experience made me stronger and more resilient. I survived, but there are many, many soldiers that returned from that war, and from more recent wars, that have never fully recovered. 

I believe this country must do more to serve those we send into combat; more than the ceremonial rituals that are appreciated, but only begin to provide our veterans the support that they need. We must dramatically improve access to health services for our veterans, and must enlist the VA in more effectively integrating their health services with those of other health care providers.

One important improvement would be to make rural vets eligible to receive health services at their local rural hospitals, clinics and mental health facilities. It doesn’t make sense to ask rural vets to travel great distances to VA clinics and hospitals, when appropriate services exist locally. And, we must pay rural health providers fairly for these services.  

If we send young men and women to fight our battles, we must be prepared to provide full access to needed health services when they return.

HIT Myths Debunked!

A few weeks ago I was thinking about all of the myths that swirl around in healthcare IT circles. Many of these myths are heavily ingrained in HIT beliefs, and some are merely misunderstandings. For example, in IT there is a belief that keeping the server room as cool as possible is best for the hardware, yet a study published by Google showed that hard drive failures do not appear to correlate to temperature at all. I keep my personal server room at 75 or so. No hard drive failures yet!

We decided that a blog series on healthcare myths would be fun. Since I started it, here are the HIT myths that I am tired of debunking.

"A single EHR will solve all of our problems!"

Phooey! This is an age-old argument that has gone on for years. Deeper still, is the general IT argument that best of breed solutions are not as cost effective as single-vendor. IT leaders in healthcare often forget that there are more providers than hospitals and clinics. The documentation and ordering needs of providers like behavioral health, home care, hospice, long-term care, and physical therapy. These other providers will likely always be on separate systems, and we will need to communicate with them electronically. Related to this, let's debunk the number-one myth I hear about interoperability!

“We think Direct is a short-term strategy, and we prefer to wait for statewide HIE.”

Balderdash! When folks talk about where we need to be in HIT they usually tell the story of query-based exchange. We talk about getting injured in a far-away state, going to an ER, and all of our medical information from other facilities is magically downloaded into the EHR there. Life is good!

That is a great scenario, and it will happen someday. However, we can use Direct right now to make a difference in patient care! Even providers who do not have an EHR can benefit from Direct by having secure communication with their referring providers. We should be getting comfortable using Direct and eliminating that stupid fax machine! Further, Direct will likely be around forever, it is not a short-term solution! Did we get rid of our phones when email became popular? 

“Patients in our community are too old to access their electronic patient data!”

Flapdoodle! I used to hear this more often than I do now, probably because we are seeing it isn't necessarily true. We have seen many studies that show this not to be the case too. Older patients have more need for medical care and can be very engaged in the healthcare. Also, many older folks use technology to keep up with their family (Skype, Facebook) and have an iPad or smart phone. Further, when we engage the patient's family and caregiver we can get them to access the patient portal nearly every time.

So, since this is a first-in-a-series kind of blog, help me out! What other myths do you hear? What needs to be debunked out there? What other synonyms for "nonsense" do you know?

One HIT Vendor's Perspective

As many of you know, I live in a rural Northern Minnesota town called Hibbing. You may have heard of it as the boyhood home of Robert Zimmerman, who later went on to fame as Bob Dylan. Hibbing is interesting in many ways, and with this being HIT week, you would be surprised to hear that it is home to a Behavioral Health EHR Vendor! IRCS, Inc is a popular Minnesota vendor for behavioral health and I had the pleasure of working with them a few years ago on a couple of projects. Interestingly, they are the only EHR vendor that I know of that has completely re-written their software from the ground up using new development tools! That was an expensive, but wise move that has enabled them to provide cutting edge software via the cloud. This allows them to provide their software to very small offices as well as large centers.

I have invited Chris Freeman, Chief Operations Officer at IRCS, Inc. to discuss their perspective to support issues. This is a topic I often discuss (see my webinar “Vendor Issues Management”) and I think it is important to consider the perspective of the vendor using a Maslow’s Hierarchy of Need model:

At the core is the requirement to sustain the business and avoid liability that could destroy the business. Next is having a profitable business, and that requires keeping and adding customers. Finally, they want to engage their employees and make a difference in the healthcare community they serve. They can’t do any of that stuff at the top with a failing business! It is important to keep this in mind when you wonder why your support issues have not been resolved as quickly as you think they should be!

Now I would like Chris to discuss the perspective of IRCS, Inc. when it comes to support and product maintenance. Take it away Chris!

IRCS, Inc has been in business since 1982 (33 years), and has been primarily focused on Behavioral Healthcare EHR software for the last 20 years.  Our software, Vireo, which Joe refers to in his introduction, is a brand new software, written from the ground up using new development tools.  Vireo was Stage 2 MU certified on Jan 30, 2014 and we were the 3^rd organization (with the 5^th software application) certified.  We believe that communication between the vendor and the customer is of primary importance.  We commonly answer phone calls directly from our customers (no complicated phone system to get stuck in here), so that is generally how an issue starts its life.   I will now share some tips (that dovetail with Joe's webinar “Vendor Issues Management”) to help your vendor get your issues solved in the least time possible.

Issue life cycle:

1) Issue begins life by either a phone call discussion or email.   A tracking ticket is produced to track the issue.

2) We attempt to reproduce the issue.  If the issue contains enough specific information for us to reproduce the issue, we will typically correct the issue within our development environment immediately.  Following that the issue will be corrected in the next release.  For critical issues, we will issue a hotfix. 

3) If the issue does not contain enough information for us to reproduce, we loop back to the customer in an attempt to obtain that information.   This step is what takes the longest amount of time, usually due to scheduling problems (on both the customer and vendor sides).  If we are unable to reproduce the issue or the root cause cannot be identified the issue is canceled.  If we obtain enough information and are able to reproduce the issue we loop back to step #2.

With any vendor, if you want your support issues corrected in the least amount of time possible, do the best you can documenting how to reproduce the issue.  Typically this takes a subject matter expert on the part of the customer, as a normal user does not have the time and/or big picture knowledge to document the information required.   If you do not have any subject matter experts on staff, you need to develop them, as it is our experience that you cannot completely utilize a software application without them.

Variables to document:

1. Type of device and operating system (i.e. Laptop running Windows 7 Professional vs iPad running iOS 9.0.2) and web browser in use (i.e. Firefox 41 vs Chrome 45 vs Safari 8.0.8).
2. User logged in.
3. Release of software in use and Date and Time issue occurred.
4. Steps to reproduce the issue.

If you follow the steps I have outlined above you will give your vendor enough information to be able to reproduce the issue, and your issue will be solved in the shortest time possible.

Thanks Chris! It is great having someone discuss openly how to best communicate issues to a vendor.