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Monday, March 7, 2016
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.
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.
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.
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?”.
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.
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 11th anniversary of my
29th 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!
Thursday, February 11, 2016
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.
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.
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