Tag Archives: disability

Links for the Caregiving Community

Posted by Jeanne Lowry on March 31, 2016 under Caregiver Corner | Be the First to Comment

According to the National Alliance for Caregiving in collaboration with AARP “More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.” That’s a lot of people! The caregiving community needs all the support it can get, and with that we’d like to offer up some helpful links:

A Place for Mom – Senior Living Blog

A Place for Mom “Connects Families to Senior Care” but their blog is full of articles that anyone living wtih, caring for or even just interacting with a senior will find helpful.

Caregiver Action Network

From their About Us: “CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.”

Family Caregiver Alliance

“Family Caregiver Alliance is first and foremost a public voice for caregivers. Founded in the late 1970s, we were the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. We illuminate the caregivers’ daily challenges to better the lives of caregivers nationally, provide them the assistance they need and deserve, and champion their cause through education, services, research and advocacy.”

National Alliance for Caregiving

“Established in 1996, the National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation, and advocacy. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues.”

Our Parents – Care Topics

Our Parents is “a free and unbiased service focused on helping families with aging parents find the best senior care solution that meets their loved one’s unique needs, be it an in-home caregiver, an assisted living facility, or a nursing home.” Their Care Topics page contains many great articles about senior care, along with links to the #ElderCareChat on Twitter.

Today’s Caregiver Magazine

This magazine operates as both a print magazine and an informative website. Today’s Caregiver is “a leading provider of information, support and guidance for family and professional caregivers.”

National Cerebral Palsy Awareness Day 2016; Can You Identify Signs Of The Neurological Disorder?

Posted by Jeanne Lowry on March 25, 2016 under Caregiver Corner | Be the First to Comment

Original article written by Susan Scutti for MedicalDaily.com

Cerebral palsy is the most common childhood motor disability, affecting 1.5 to four of every 1,000 live births or children worldwide, according to the Centers for Disease Control and Prevention.

“When I tell people my story, they are often shocked,” DonnaMarie Comstock wrote in a letter to United Cerebral Palsy. Born three months premature, “the doctor told my mom not to look at me or bond with me,” she wrote. “He was just trying to be kind to her, to spare her the sorrow of losing me.”

Cerebral palsy is an umbrella term referring to a group of neurological disorders that permanently affect body movement, muscle coordination, and balance. It’s not always detected immediately, but most children are born with it, and early signs generally appear before a child reaches 3 years old. Such was the case with Comstock; because she wasn’t developing as her older brother had, her mother suspected something might be wrong. However, confiding her fears, the pediatrician’s first response was a disheartening, “no, she’s just lazy.” Soon enough, though, Comstock received a formal diagnosis of cerebral palsy.

The most common physical symptoms of the disease include a lack of coordination when performing voluntary movements (ataxia); stiff or tight muscles, and exaggerated reflexes (spasticity); walking with one foot dragging, on the toes, with a crouched or scissored gait; and muscle tone that’s either too stiff or too floppy. Common neurological symptoms include seizures, hearing loss, impaired vision, bladder and bowel control issues, pain, and abnormal sensations.

Cerebral palsy is not hereditary or progressive, meaning it doesn’t get worse over time. It generally occurs when there’s damage to the developing brain, specifically in the part that controls muscle movement, during pregnancy, birth, or shortly after birth. For the small number of children who develop the disease within their first years, the cause is usually neurological damage from brain infections, such as bacterial meningitis or viral encephalitis. Head injuries, falls, and child abuse may also contribute.

You can read the full article on Medical Daily.

Links for the Incontinence Community

Posted by Jeanne Lowry on March 3, 2016 under BladderMatters | Be the First to Comment

According to the Centers for Disease Control, over half of seniors in the United States are afflicted with incontinence. Of course, it’s not just seniors who experience incontinence. People of all ages can be affected, due to a large number of factors. Whatever the reason you or the person you care for may find for being incontinent, we’d like to help with these great resources for both urinary and fecal incontinence:

Simon Foundation for Continence

The mission of the Simon Foundation is to: “Bring the topic of incontinence out into the open, remove the stigma surrounding incontinence, and provide help and hope to people with incontinence, their families and the health professionals who provide their care.”

National Association for Incontinence

From their About Us: “National Association for Continence is a national, private, non-profit 501(c)(3) organization dedicated to improving the quality of life of people with incontinence, voiding dysfunction, and related pelvic floor disorders. NAFC’s purpose is to be the leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.”

Urology Care Foundation

“The Urology Care Foundation advances urologic research and education. We work with health care providers, researchers, patients and caregivers to improve patients’ lives. The Urology Care Foundation is the official foundation of the American Urological Association.”

Medline Plus – Urinary Incontinence

This government site has a basic explanation of the condition, resources to learn more, videos, research, and patient handouts.

Health in Aging

This site was created by the American Geriatrics Society’s Health in Aging Foundation, to “provide consumers and caregivers with up-to-date information on health and aging.”

National Institute of Diabetes and Digestive and Kidney Diseases – Fecal Incontinence Article

“The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) conducts, supports, and coordinates research on many of the most serious diseases affecting public health. The Institute supports clinical research on the diseases of internal medicine and related subspecialty fields, as well as many basic science disciplines.”

Links for the Spinal Cord Injury Community

Posted by Jeanne Lowry on January 28, 2016 under Resources, Very Urological | Be the First to Comment

The National Spinal Cord Injury Statistical Center released figures from 2015 that state: “Given the current population size of 313 million people in the U.S., it is estimated that the annual incidence of spinal cord injury (SCI) is approximately 40 cases per million population in the U.S. or approximately 12,500 new SCI cases each year.” Many individuals with a spinal cord injury often use urological supplies, which we here at TotalHomeCareSupplies.com offer our customers. With that in mind, let’s explore several of the informational and supportive sites online for those with the injury, and please comment below if you have others you’d like us to add!

United Spinal Association
From their About Page: “United Spinal Association is dedicated to enhancing the quality of life of all people living with spinal cord injuries and disorders (SCI/D), including veterans, and providing support and information to loved ones, care providers and professionals.”

Christopher and Dana Reeve Foundation
Their mission statement: “The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.”

UAB Spinal Cord Injury Model System
“The University of Alabama at Birmingham Spinal Cord Injury Model System (UAB-SCIMS) maintains this Information Network as a resource to promote knowledge in the areas of research, health and quality of life for people with spinal cord injuries, their families, and SCI-related professionals.”

Mayo Clinic
The Mayo Clinic offers definitions, symptoms, test explanations, complications, what to expect from the condition and from doctors appointments and more.

Medline Plus – Spinal Cord Injuries
This government site has a basic explanation of the condition, resources to learn more, videos, research, and patient handouts.

MedicineNet
This site is part of the WebMD family, and their About Page states they’re: “an online, healthcare media publishing company. We provide easy-to-read, in-depth, authoritative medical information for consumers via its robust, user-friendly, interactive website.”

Spinal Cord Injury Zone
This site is a “not-for-profit Spinal Cord Injury educational Knowledge Base. The mission of The Spinal Cord Injury Zone is to archive important Spinal Cord Injury News and Spinal Cord Injury Information for education and awareness.” They also offer personal stories of those with spinal cord injuries.

Talking with Others about Your Special Needs Child

Posted by Jeanne Lowry on October 20, 2014 under Caregiver Corner | Be the First to Comment

Whom you talk to about your special needs child is completely up to you. You may have coworkers who know you have a child, but little about them. Or someone you chat with at the coffee shop, but it just hasn’t come up yet. When and if you do tell these people about your child, what are the pieces of information to share?

Don’t feel the need to tell them the whole diagnosis
You can keep things simple when talking about your child’s diagnosis. You can say “they’re autistic” instead of telling them the details, or even just say “they’re on the spectrum.” You may remember all the things the doctor has said over the years, but your kid may have already grown out of some of those diagnoses. Only share information you’re comfortable with telling them.

Tell them the positive things, but only as much as you’d like
Maybe your child rode their bike for the first time last week, and you’d like to share that with a friend. Go right ahead! But you also don’t need to get too personal. Having a feeding tube removed may be incredible news to your family, but if you feel like it’s too much to get into with someone you don’t know very well, don’t worry about it. You can just say you had a really great weekend and leave it at that.

Don’t hide the realities: talk about the stress
ALL parents are stressed. Raising children is a stressful process. You don’t need to only talk about your child’s achievements and make every day sound like a miraculous one. Your friends, even those without kids, can relate to someone being stubborn. Denying the reality of the situation just means you take more of those stresses on to your shoulders, instead of sharing them and being able to laugh about them later.

Above all, stay in your comfort zone. Just because someone is sharing about their kid, doesn’t mean you have to share about yours. Or just because they’re not sharing, doesn’t mean you can’t tell them that you’re really proud/happy/frustrated with/enamored of your child. We here at TotalHomeCareSupplies.com would love to hear about your experiences talking with friends, family or acquaintances about your special needs child.