Getting Care: There’s No Place Like Home
Jeff Stafsholt is a Green Bay Packers fan second to none. Like the Wisconsin football champs, he has a winning attitude and a “never give up” mindset. To help manage the effects of limb-girdle muscular dystrophy, Jeff has a team of home care professionals who assist the 34-year-old as he independently quarterbacks his life.Read More
How To Get Personal Care Assistance in Emergency Shelters
Wildfires, windstorms and floods have been in the news regularly this year. What if such a disaster suddenly hit your neighborhood? Would you be prepared? Planning ahead for emergency situations is especially important for people who have disabilities that affect mobility and self-care. You are in the best position to plan for your own safety and well-being since you know your functional abilities and needs best. But where do you begin?Read More
Hit the Road in an Accessible RV
Barbara Graztke loves to vacation and enjoys traveling six to eight months out of every year. But she finds hotels uncomfortable and doesn’t like to fly. She visits family and friends across the country, but is unable to stay in their homes.The 65-year-old road warrior has post-polio syndrome and uses a power wheelchair. Barbara’s solution to making travel accessible is a 40-foot-long mobile home.Read More
New Apprenticeship Program for Personal Care Attendants
A new training opportunity, the Direct Support Professional Registered Apprenticeship Program, will assist direct support professionals (such as hired caregivers and aides) in advancing in this essential field, say the program’s creators, the National Alliance for Direct Support Professionals (NADSP) and the American Network of Community Options and Resources (ANCOR).Read More
504 Plans: What Parents Should Know
Some students with muscle diseases have IEPs (Individualized Education Plans) and some have 504 plans. What’s the difference? Should parents be concerned if the school says their child doesn’t qualify for an IEP, and creates a 504 plan instead — or vice versa?Not necessarily. As the accompanying chart and diagram shows, there’s a lot of overlap between the two plans. The key is for parents to be aware of the pros and cons of each, and keep a close eye on how well the plan is meeting their child’s special needs at school.Read More
It just takes one little wrong move, like leaning over to tie a loved one’s shoelace, for something to pop in the lower back and put you out of commission. For a caregiver, this kind of injury can be disastrous.“Loads of people have had to give up caregiving due to injury,” says Brenda Shaeffer, [formerly] a physical therapist at the MDA/ALS Center at Johns Hopkins University in Baltimore. “Then they have to find someone else to provide care, or in some cases find a nursing home.”Read More
Parents Beat Back Burnout
All parents make sacrifices in caring for their children, and it’s widely acknowledged that parenting is a full-time job.But parents of children with muscular dystrophy or other neuromuscular diseases know that their job is fulltime and then some. And although this job carries great joy, it also carries a higher-than-average risk of anxiety, depression and exhaustion — commonly called burnout.Read More
Where Are all the PCAs?
Wanted: Entry-level Taco Bell “crew worker.” Candidate must be able to perform one or more repetitious tasks in a highly standardized manner and operate automatic machinery. Pay: “competitive” wage with the possibility of raises. Immediate access to basic benefits package. Generous 401K match. Opportunities for training and career advancement.Read More
Is Your PCA Driving You Crazy?
Personal care attendants, personal assistants, attendant caregivers: Whatever you want to call them, we all know how important they are to our independence. Depending on somebody isn’t easy. Here are some ways to make the road smoother.For the relationship to be successful, both the personal care attendant (PCA) and the consumer need to understand their roles and what’s expected of them. When there’s miscommunication, trouble often follows.Read More
Despite the Challenge, People Love Their Live-Ins
It’s not easy to live with another person. “Stuff” comes up, like privacy (“stay out of my stuff”), cleanliness (“pick up your stuff”), respect (“get that stuff outta my face”) and trust (“where’s my stuff?”).Yet many people with physically disabling conditions find that living with a personal care attendant solves more “stuff” than it creates — critical stuff like needing reliable help getting in and out of bed, dressing, cooking, or going to the bathroom.Read More
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MDA Resource Center: We’re Here For You
Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.