Chester Kahapea, once the jubilant face of Hawaii’s statehood, now adjusts to life with ALS
posted on September 7, 2009 - 9:00pm
posted on November 1, 2005 - 9:50am
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...
posted on December 31, 2009 - 1:19am
According to the National Family Caregivers Association, more than 50 million Americans care for loved ones with a chronic illness, disability or old age.
Caregivers assist people with neuromuscular disease in accomplishing many tasks of daily living. From eating to grooming, dressing to transferring, traveling to sleeping, and more, caregivers truly make life fully possible.
A co-op model of care for adult children
posted on December 31, 2009 - 1:00am
In the 1980s, our worlds changed forever, when our separate families each received the devastating news that our children had Duchenne muscular dystrophy. At the time of the diagnosis, we were told our boys probably would live into their mid-teens, or possibly early 20s.
Well, here we are — it’s 2010 and our boys are still here. Jason (Adele’s son), Patrick and David range in age from 24 to 30....
Even in tough times, this self-directed service option is giving Medicaid consumers more flexibility and saving states money
posted on March 12, 2010 - 2:30pm
Cash and Counseling, a government program that gives Medicaid recipients in 15 states direct control over their personal-care spending, has been so successful that a majority of states are now adopting it or similar programs. A new report tells why and how.
Events, awards and campaigns are planned to recognize and raise the status of professional caregivers during Direct Support Professionals Week
posted on September 13, 2010 - 3:11pm
Do you know an outstanding professional caregiver? This would be a good week to show some special appreciation for the important work he or she does.
Spurred on by organizations that represent professional caregivers, the United States Senate has declared the week starting Sept. 12, 2010, to be the third annual National Direct Support Professionals Recognition Week. Events are planned...
posted on October 1, 2010 - 3:25pm
“There are four kinds of people: those who are caregivers, those who have been caregivers, those who will be caregivers, and those who will need a caregiver.” ~ Rosalynn Carter
While the month of November is recognized as National Family Caregivers Month, a salute to caregivers is warranted all 12 months of each year.
The mother of a man with SMA seeks to inspire others to modify favorite family recipes to accommodate a loved one's eating difficulties
posted on January 1, 2011 - 1:31pm
Have you ever considered whether you eat to live or live to eat?
Food often holds a place of honor in our lives. Have you noticed how many events are accompanied by an element of food and drink? We have cake to celebrate birthdays and family reunion potluck picnics, as well as champagne toasts at a wedding.
Survey confirms importance of family caregivers to adults with muscle disease
posted on October 1, 2011 - 10:37am
In the recent National Transitions Survey conducted by MDA of our young adult and adult communities, 40 percent of respondents said their daily physical care assistance was provided by family caregivers; 41 percent indicated the majority of their transportation needs are met by a parent, spouse or family caregiver; and 26 percent included family financial support among their primary sources of...
... that will lighten the load of your caregivers and yourself
posted on October 1, 2010 - 4:45pm
I was taught it is better to give than to receive. Don’t ask for handouts. Pull your own weight.
All my life, I told myself, “You are only handicapped if you allowed yourself to be handicapped.” That belief worked for me when I could still stand and walk. Now that my legs don’t function and my hands are extremely weak, I recognize that my physical being has limitations. I have readjusted my self-...
