In this episode hosts Kym McNicholas, Dr. John Phillips, and Nurse Practitioner Kay focus on innovation around ALS. Most are familiar with it now more than ever because of the famous internet ice bucket challenge involving the pouring of a bucket of ice water over a person's head, either by another person or self-administered, to promote awareness of Amyotrophic lateral sclerosis, or ALS. ALS is a progressive nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of muscle. Most people with this disease begin with muscle stiffness or weakness. But they eventually lose the ability to walk, dress, write, speak, swallow, and ultimately breathe on their own when the muscle paralysis spreads to vital organs such as the lungs.
Why Talk About ALS
We are talking about ALS on the Heart of Innovation for three reasons:
- Although it's not considered a vascular disease, someresearchers believe that an ALS-linked gene mutation could cause disruptions in
the blood-spinal cord barrier, causing the neurovascular inflammatory response,
which is ALS. - Due to the lack of mobility as ALS progresses, manypeople with ALS end up with circulation issues in the legs. Circulation issues
in the legs could impact the arteries and/or veins. If both, it’s known as
peripheral vascular disease. We've talked about that at length on this show
where arteries start hardening and with the veins, the flaps that help usher
blood flow back to the heart, start malfunctioning. - I'm impressed with the innovation around treatment anddisease management has led to a longer, better quality of life due to especially organizations such as Team Gleason Foundation, founded by former New Orleans Saints NFL great Steve Gleason.
ALS Innovation
Kearney Gray, Director of development for the Gleason Foundation talks about how
patient-driven innovation with communication and mobility are helping patients
to live a longer, better quality of life. Team Gleason Foundation is on the
frontline with patients removing logistical, financial, and emotional barriers
to living a better quality of life with ALS. The Gleason foundation has also played
an integral role in raising the patient voice to create change in care,
empowering companies to create new, novel approaches to improving communication
for people with ALS, and not only educating lawmakers on ALS, but inspiring
them to take action to help elevate care.
ALS Communication Innovation
One of the most impactful innovations Team Gleason Foundation has led the charge on is with a communications device that would allow people with ALS to use their own voice versus that which is computer generated in advanced stages of disease. Founder Steve Gleason challenged
Microsoft Corporation to develop a technology that would help people bank their voice while they’re still able to speak as a process of storing their own voice for future use in computer-based speech synthesizers.
ALS Mobility Innovation
Team Gleason Foundation is also innovating around mobility with a chair lift that raises someone with ALS higher in their chair to help them rise to the level of others to allow for better engagement in social situations. It also helps with chair to bed transfers one someone with ALS can no longer walk on their own.
Creative Strategies for ALS Nutrition
Dietitian Melissa Hooper also joins the discussion to talk about the importance of
nutrition in slowing the progression of disease and improving the quality of
life of people with ALS. She expresses concern that critical feeding tube pumps
are not covered by Medicare but should because it helps ease the process for
caregivers and patients. She suggested that the Team Gleason Foundation might
want to take steps to ask lawmakers to ensure those who need it can get full
access with insurance coverage. Team Gleason Foundation has been successful in
advocating for people with ALS and getting legislation passed in 2015 to ensure
all those who need communication deices will get full access to them, whether
at home, in the hospital, nursing home, or on hospice. The legislation was made
permanent and signed into law in 2018.
ALS MentalHealth Treatment
Since peoplewith ALS maintain their cognitive ability throughout disease progression,
knowing what's to come and what's happening can impact mental well-being. So,
Kathryn Walker, CEO, MSN-Anesthesia, MSN-Psychiatry, at mental wellness
treatment centers, Rivatalist, adds to the conversation with available options
to improve mental health. She talked about the increased adoption and use of
ketamine in treating people with specific mental health conditions such as with
ALS.
During this episode, both Kearney and Dr. John Phillips drive home the importance of
listening to the patients who are suffering from the disease and understanding
that care for patients with chronic, debilitating illnesses such as ALS and
even Peripheral Artery Disease, goes beyond an appointment with their
physician, a medication, or a surgical treatment. Where a patient spends most
of their time is at home and that’s where not only healthcare teams, but also
insurance companies and lawmakers need to put more effort into helping patients
to live a better quality of life. Companies will innovate around better disease
management at-home if doctors will prescribe it and insurance will cover it. All
should have access to assistance with living a better quality of life.
#ALS #TeamGleasonFoundation #SteveGleason #kymmcnicholas #DrJohnPhillips #MentalHealth #Kathrynwalker #dietitianmelissa #Kaysmith #ALSinnovation #peripheralarterydisease