EPISODE TITLE: ALS: The Classic Medical Perspective
EPISODE SUMMARY: In this episode of NOGGINS & NEURONS: Brain Injury Recovery Simplified, Doro and Deb talk about Amyotrophic Lateral Sclerosis (ALS) or, Lou Gehrig’s Disease. We covered:
- What is ALS?
- Signs & symptoms of ALS including:
- Affects voluntary muscles-hands, forearms, legs.
- Early symptoms include:
- Fasciculations- spontaneous, uncontrolled discharges of motor neurons; irregular twitchings: Muscle twitches in the arm, leg, shoulder, or tongue
- Muscle cramps
- Tight and stiff muscles (spasticity)
- Muscle weakness affecting an arm, a leg, or the neck
- Slurred and nasal speech
- Difficulty chewing or swallowing
- Difficulty walking, picking up objects, fine motor tasks
- Ongoing/Later symptoms:
- Chewing food and swallowing (dysphagia)
- Drooling (sialorrhea)
- Speaking or forming words (dysarthria)
- Breathing (dyspnea)
- Unintended crying, laughing, or other emotional displays (pseudobulbar symptoms)
- Constipation
- Maintaining weight and getting enough nutrients
- Frontotemporal dementia
- Dementia that affects the frontotemporal lobe.
- Affects thinking, talking, walking, and socializing.
- FTD and other frontotemporal disorders are a common cause of early-onset dementia, often appearing when people are in the prime of life.
- Families often suffer, as they struggle to cope with the person's daily needs as well as changes in relationships and responsibilities.
- Risk Factors (National Institute of Neurological Disorders & Stroke)-Having a risk factor does not mean a person will or will not get a disease
- Age—Although the disease can strike at any age, symptoms most commonly develop between the ages of 55 and 75.
- Biological sex—Men are slightly more likely to develop ALS than women. However, at older ages, men and women are equally likely to be diagnosed with ALS.
- Race and ethnicity—Whites and non-Hispanics are most likely to develop the disease, but ALS affects people of all races and ethnic backgrounds.
- National Institute of Neurological Disorders & Stroke/ALS.org
- Some studies suggest military veterans are about one and a half to two times more likely to develop ALS, although the reason for this is unclear. Possible risk factors for veterans include exposure to lead, pesticides, and other environmental toxins. Some studies have also shown that head injury can be associated with higher risk for ALS, but more research is needed to understand this connection.
- For about 90% of all cases, there’s no known family history of the disease or presence of a genetic mutation linked to ALS.
- For 5-10% of all cases, there’s a known family history of the disease. This is often called familial ALS.
ALS.org
- In families with familial ALS, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease.
- Medical treatment-involves medications
- Common PT & OT interventions
- Assistive technology & Communication devices
- OBI – independence with feeding
- Battery-operated salt & pepper shakers
- Steady spoon if tremors are present
- Built up handle utensils
- Eazy Hold grip aids
- Universal cuff
- Divided Dish
- GUS communication devices
- ALS specific websites & show References
- Maintaining Optimal Quality of Life
- Support groups
- Proper equipment & Knowledge of use
- RESOURCES:
- ALS Association-enter zip code to find assistance in your state. In FL: General Inquiries
- Community support groups & counseling
- Transportation assistance
- Equipment loan bank-people with ALS can borrow assistive equipment on long term basis
- Assistance finding & obtaining community & government resources
- Multidisciplinary medical care under one roof
- FAAST-FLORIDA ALLIANCE FOR ASSISTIVE SERVICES & TECHONOLGY: org
- FAAST is a program designed to provide assistive technology to Floridians with disabilities and their loved ones. This program offers a range of activities, including device loans, demonstrations, reutilization, and training, to ensure Floridians have access to the latest in assistive technology. Additionally, FAAST provides information and assistance, as well as a financing program available state-wide. With a commitment to accessibility and innovation, FAAST is leading the way in assistive technology in the state of Florida.
- CENTER FOR ASSISTIVE TECHNOLOGY-University of Buffalo
- The Center for Assistive Technology (CAT) is a non-profit organization that conducts research and provides educational and service programs to increase consumer knowledge related to assistive technology for persons with disabilities.
- CAT is also the Western New York Regional Center for the New York State TRAID Program, for which it coordinates information on technology-related expertise and resources for people with disabilities.
- SHEPHERD CENTER-CENTER FOR ASSISTIVE TECHNOLOGIES Atlanta, GA
- The Center for Assistive Technologies at Shepherd Center helps individuals regain independence after a neurological injury or condition. Challenges with mobility and cognitive function can impact daily activities like using devices, controlling home environments, and driving. Our team develops, tests, and customizes assistive technologies to support rehabilitation, empowering you to navigate life with greater ease and autonomy.
- UPMC CENTER FOR ASSISTIVE TECHNOLOGY-Pittsburgh, PA
- The CAT is an interdisciplinary center comprising multiple outpatient clinics that offer a variety of services to assist you.
- University of North Carolina Wilmington Center for Assistive Technology
- Miami University Center for Assistive Technology Oxford, OH
- Assistive Technology Center New Jersey
- Utah Center for Assistive Technology
- University of South Carolina Assistive Technology Program
We hope you enjoyed this episode of Noggins And Neurons. As always, we want to hear from you! Email us at Nogginsandneurons@gmail.com
THERAPY PRACTICE RESOURCES:
DEB’S RESOURCES
PETE’S blog and book, “Stronger After Stroke: Your Roadmap to Recovery” 3rd edition:
DORO’S OT PRACTICE – The Neuro Hub
REQUEST TO BE A GUEST ON NOGGINS & NEURONS. If you’re passionate about stroke recovery and have information or a story you believe will help others, we’d love help you share it on the show. Complete the guest request form below and let’s see if we’re a good fit!
- Guest Request Form
- MUSIC: “Soft Inspiration” by Scott Holmes/Scott Holmes Music/scottholmesmusic.com
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