Tag Archives: independence

From Isolated To Independent: Celebrating National Assisted Living Week

Now in its 21st year, National Assisted Living Week celebrates the lives and achievements of individuals with disabilities, long-term illnesses and injuries. In observance of this year’s theme, “Keep Connected,” we are taking the time to recognize the many ways that technology can be used to increase opportunity and facilitate better care and communication.

National Assisted Living Week 2016

This year’s theme is, “Keep Connected” 

For as long as humans have walked the earth, we’ve sought to simplify and improve our lives with the use of technology.

From the earliest stone tools to the first personal computers, our inventions serve as a means to enhance our natural abilities, helping to strengthen our relationships with others and refine our understanding of the world.


A Smarter, More Connected World


Technology has granted us the power to not only improve but extend and save lives. Medical advances have given us greater power to diagnose and treat illnesses than ever before, and now “smart” assistive tech promises to revolutionize the way people suffering from debilitating illness or catastrophic injury live their lives as well.

Fitbit Surge via pcmag.com

The “tech revolution” includes personal trackers like this Fitbit Surge – via pcmag.com

The Internet has long been a means of virtual connection, allowing users to communicate with one another whether across the street or across the world. Now, the Internet is increasingly used to connect us to the world itself. Smart devices – Internet-enabled objects powered by ever-smaller chips and sensors – have begun a revolution in which everything from watches to WiFi thermostats are able to share data with us and with each other. While the obvious appeal is often novelty or convenience, this shift also represents a powerful new way for people with a disability to live richer, more connected and more independent lives.

Vivint smart assistant

A “smart assistant” can help you control multiple features in your home – via vivint.com


Staying Connected


Each year, National Assisted Living Week encourages us to celebrate those who require assisted living and their caregivers, as well as to recognize the unique challenges they face. This year’s theme reminds us how vitally important it is for individuals with chronic diseases or disabilities to stay connected to friends, family and the world around them. Feelings of isolation and helplessness are common, and disability can erect seemingly insurmountable physical and social barriers. Fortunately, that may not be the case for much longer. Technology provides solutions that may allow disabled individuals to live more independent and interconnected lives, leading to improved quality of life and overall well-being.

Suria Nordin Kirby Nordin HelpHOPELive

Kirby repurposed existing tech to make life easier for his wife, our client Suria Nordin


Empowerment through Technology


The steady march of technology continues to remove obstacles that once isolated individuals with disabilities. Where the ability to operate a mouse and keyboard was once a necessity, voice recognition technology now provides easier access to phones, computers and other devices. Artificial intelligence, though still in its early stages, has already given us personal assistants that can handle many routine tasks that were once a source of struggle for many people. Home automation grants the power to remotely control and automatically adjust the local environment, from thermostat settings to interior lighting to door locks and other security features. Wearable technology opens new avenues not only for staying connected but for doctors and health workers to collect important information that may allow them to provide a higher level of personalized care.

Mikki Marshall control4

Mikki Marshall controls her home environment through technology for greater independence – via control4.com


Turning Disability into Ability


“Smart” technologies like home automation, service robotics and the Internet of Things are still in their infancy, but their potential impact is already being felt. The future has never looked brighter for individuals living with chronic illnesses, catastrophic injuries and other disabilities, as these technologies are poised to revolutionize the way they interact with the world, connect with friends and family and manage their health. Providing assistance that allows for more active endeavors and ability to enjoy many of the freedoms others take for granted, technology can provide tremendous support for people with disabilities and those who care for them.

robot assistant spectrumieee.org

Robot assistants could revolutionize home health care and senior care – via spectrum.ieee.org

Mobile technologies may also lead to improved health care and lower medical costs by providing more high-quality data, assisting in the diagnosis and management of health conditions, helping to prevent accidents and keeping patients actively involved and invested in their care.

Vivint text alerts

Integrated assistive tech can eliminate anxieties and open new possibilities

Technology has always had a central role in shaping both the present and the future. As smart products and mobile computing devices become more sophisticated, they will continue transforming the ways in which we interact with both our surroundings and one another. The many obstacles that people with disabilities and debilitating illnesses face won’t disappear overnight, but by keeping – and staying – “connected,” the world is a more welcoming and accessible place for everyone.


This guest post was written and submitted by Beth K, a freelance writer specializing in home automation and technology topics. How will you celebrate National Assisted Living Week?

 

Voices of Hope: Living Well With A Chronic Illness

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

Anna Crum MS HelpHOPELive

Anna Crum is living with multiple sclerosis.


How do your RRMS symptoms disrupt your daily life?


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

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


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


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


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


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

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


Do you have a resolution for 2016?


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

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


Why do you plan to embrace your MS this year?


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

Anna Crum HelpHOPELive nutrition

Anna plans to help people with MS manage their nutrition.


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

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

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


What does hope mean to you?

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


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

HelpHOPELive Clients In The News October 2015

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


Matt Collura: Annual 5K Provides Financial And Emotional Benefits

Matt Collura 5K Run/Walk

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

Matt Collura 5K Run/Walk 2015

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


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

Patrice Penny-Henderson Elkhart kidney transplant

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

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


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

Michael Carns veteran MS multiple sclerosis Marine National Guard

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

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

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


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