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Tell Us What You Think –
Provide Input into Emergency Preparedness Education for People with Disabilities
The American Red Cross, working with the Centers for Disease Control and Prevention, is developing educational materials on terrorism and emergency, covering five major preparedness topics, including:
1. Mass Evacuation and Evacuation Planning for People with Disabilities and their Caregivers.
2. Emergency Water and Food Supplies.
3. Shelter-in-Place During Chemical or Radiation Emergency.
4. Quarantine and Isolation.
5. Maintaining a Healthy State of Mind.
This is your opportunity to offer feedback and input before they are finalized. Through a series of small focus groups, we are gathering the thoughts and opinions of people [...]
Please tell us what you think of Action. Take our five to ten minute survey online.
Any reader of our print version* of Action can take the survey, including spouses or parents of United Spinal members.
To participate, please go to www.surveymonkey.com/s.asp?u=276632144636.
Thank you!
* Members of United Spinal Association automatically receive the print version of our monthly membership newsmagazine, Action. To find out if you are eligible to join United Spinal, please go here. If you are not eligible to join United Spinal but are interested in receiving Action, please e-mail us at action@unitedspinal.org.)
Health & Well-Being
Paul and Judy O’Lone show Mary Corkern how to use a weight
machine at Accessible Fitness, a gym in Santa Clara, California.
Misc.
PRESIDENT’S MESSAGE: “As Long as You Have Your Health”
DIRECTOR’S NOTES: Take Care of Yourself
LETTER FROM THE EDITOR: What’s New?
PROGRAM NOTES
CORPORATE CONNECTIONS: Merrill Lynch Employees Lunch & Learn About SCI/D
PUBLIC POLICY: Do You Have the Wheelchair You Need? If Not, We Need to Know
LEGISLATIVE NEWS
Senator Bingaman to Introduce “In the Home” Bill
State Stem Cell News
Features
Tai Chi in a Chair
This form of adaptive tai chi is good [...]
From its inception, our organization has looked for ways for our membership to be healthy and stay healthy. We have partnered with nurses, doctors, and social workers to ensure better health care for all persons with spinal cord injuries/disorders (SCI/D). We have also worked with hospitals and administrations to make their facilities the best in the world. But no matter how hard we try, no matter how much lobbying we do, we need you to take an active role in your health care. If you are receiving medical retirement, your health care is your fulltime job. If you are not retired, staying [...]
This issue marks the second appearance of The Observatory, an open-ended column that reflects an aspect of the cover theme not dealt with in the feature section. The first Observatory was Liz Treston’s take on the issue of accessible housing in March. This month, another writer who happens to be a member, Linda Cronin, looks at a significant barrier to health and well-being: inaccessible doctor’s offices.
CORPORATE CONNECTIONS:
Merrill Lynch Employees Lunch & Learn About SCI/D
United Spinal Association was invited by the Merrill Lynch Disability Network to conduct last month’s Lunch & Learn educational workshop. The program, held on May 11, featured United Spinal Association’s John Del Colle and Marlene Perkins, along with Dr. Trevor Dyson-Hudson, a United Spinal member and rehabilitation research scientist at Kessler Medical Institute. Entitled “Spinal Cord Injury: Lessons, Life & Independence,” the program was designed to educate Merrill Lynch staff about rehabilitation, medical research, community resources and life after SCI.
Senator Bingaman to Introduce “In the Home” Bill
Senator Jeff Bingaman (D-NM) is planning to introduce legislation to eliminate Medicare’s “in the home” restriction on mobility devices such as wheelchairs and scooters. Currently, Medicare will cover devices needed for use inside the beneficiary’s home, but will not pay for devices a beneficiary may need to move beyond their front door and access the community. To fix this discriminatory restriction, Senator Bingaman has drafted a bill that would require Medicare to cover the cost of wheelchairs or scooters that beneficiaries with long-term mobility impairments need to be able to participate in “domestic,” “vocational,” [...]
This form of adaptive tai chi is good for range of movement, arm and stomach muscles, and the respiratory system. And almost anyone can do it.
By Lori A. Wood
Gary Paruszkiewicz (center) has developed a form of tai chi that people can do in chairs or wheelchairs.
The story of one man’s journey toward an adaptation of a popular slow-motion form of an ancient Chinese martial art begins in October 1991, when Gary Paruszkiewicz was diagnosed with multiple sclerosis. Today, Paruszkiewicz is the Certified Stress Management Educator at Stress Management Workshops, Inc., located in Kankakee, Illinois.
Up from Bottom
“I was born [...]
A former champion bodybuilder rediscovers physical fitness following diagnosis for MS.
By Lori A. Wood
“I started exercising and joined a gym when I was 13 years old,” says Paul O’Lone, Founder and Executive Director of Accessible Fitness, www.accessiblefitness.com, a fitness center for people with disabilities, located in Santa Clara, California. “In 1979 or ‘80, somebody gave me a box of bodybuilding magazines and I saw these pictures of Arnold Schwarzenegger and said, ‘I would like to look like that someday.’ I started exercising, did my first bodybuilding show when I was 15 and placed third in it. By the time I [...]
By Rob Ingraham
The specialty of physiatry is defined as “a medical specialty concerned with the prevention, diagnosis, treatment, and management of disabling diseases, disorders, and injuries typically of a musculoskeletal, cardiovascular, neuromuscular, or neurological nature by physical means—as by the use of electromyography (EMG), electrotherapy, therapeutic exercise, or pharmaceutical pain control” (Medline Plus).
The field is sometimes confused with physical therapy, but Dr. Monifa Brooks, staff physiatrist at the Kessler Institute for Rehabilitation in West Orange, New Jersey, explained that, while a physiatrist will often work with a physical therapist, the specialty of physiatry requires significantly more training. “A [...]
In New York City, a shelter opens to house people with disabilities who are escaping from abusive relationships.
By Jennifer M. Rodriguez
After years of abuse, and being taken across the country from New York City to California by her abuser who then abandoned her and kidnapped her children, Theresa McIntosh was left to fend for herself in an unfamiliar place with no money, resources, family or friends. Just when it seemed as if things couldn’t get worse, Theresa was dealt yet another unlucky card, when a car ran over her while she was crossing a Los Angeles street and which subsequently [...]
Domestic violence is more common than you think.
By Tara Haley, LMSW
Statistics show that up to 85% of women with disabilities are victims of domestic violence (DV). Children with disabilities are 4 to 10 times more likely to be abused than their able-bodied counterparts. And people with disabilities stay in abusive relationships longer than victims without disabilities, generally around 11.3 years as opposed to 7.1 years for a person without a disability.
United Spinal has always put its money where its mouth is when it comes to member well-being.
By Terry Moakley
During the initial year of the existence of our predecessor organization, founding members supported a resolution to “set up a research foundation for a study of problems in all phases of paraplegia,” according to the April 1947 issue of The Paraplegia News. Soon after, the National Paraplegia Foundation (NPF)-today known as the National Spinal Cord Injury Association-came into being. This early recognition of the need for diverse medical research continues today in the programs of our association.
Later on in the 1940s, [...]
Car enthusiasts with disabilities nationwide now have a sport to get excited about.
By Tom Scott
SCCA Pro Solo Driver Jerry Lamb, a United Spinal member,
whips through a turn in his modified BMW during one of
SCCA’s regional events.
It’s called Solo, and just about anybody can participate.
Solo competitions are the Sports Car Club of America’s (SCCA) brand for the general sport of autocross, which emphasizes the driver’s ability and the car’s handling characteristics. Drivers are timed as they maneuver through a paved course, at normal highway speeds or below, designated with traffic cones in a low-hazard location, such as [...]
The author has a philosophy, based on years of experience and careful thought, about how to look sharp while using a wheelchair.
By Tiffiny Carlson
When I was injured at the age of 14, I automatically assumed I’d be destined to wear patterned muumuus and slippers in public, condemned to look frumpy before my time. But I was wrong. After 3 years of depression following my accident, I met a stylish paraplegic who worked at the rehab I went to. She proved all of my assumptions wrong. She was beautiful, successful, a wife, a mom, and she knew how to work a [...]
By Linda A. Cronin
Do you find it difficult or impossible to transfer to the exam table at your doctor’s office? Do you ever need to be lifted by staff? Has the nurse ever skipped weighing you because the scale is inaccessible? Have you been examined while sitting in your wheelchair? Do you find it tough to access the office because of heavy doors, few parking spaces, hidden ramps, or narrow hallways?
For me, the answer to all the above is yes, yes, yes, yes, yes. Time after time, the quality of effective medical care I receive is compromised when I [...]
By Beth Livingston
“You people are amazing!”
How often do you hear that and wonder whether you belong to some unnamed tribe?
When I returned to Bozeman after rehab, I was officially “different.” I was in a wheelchair. I stood out. I suppose some communities have larger populations of people with disabilities than in Bozeman, Montana, but it sure felt like I was the only cripple for miles around.
Yes, I said “cripple,” and in my geographic locale, that is rancher-speak for “you people” thus, acceptable terminology. When a calf is injured on the back 40, it is not “disabled.” When a [...]
By Ed Lash
In my last few columns, I discussed some basics of self-help. Now let’s pause and ask an even more basic question: What exactly is multiple sclerosis (MS) anyway?
By Tamar Asedo Sherman
Once you’re determined to go back to work, you can save yourself a lot of unnecessary energy expenditure by visiting your local One-Stop Career Center. Established under the Workforce Investment Act of 1998, these centers are designed to provide a full range of assistance to job seekers in one location so you don’t have to go from place to place to get the services you need. They offer assessment, training referrals, career counseling, job listings, placement, and other employment-related services, all under one roof and free of charge. That’s right-they don’t cost you a thing!
By Rosemarie Rossetti, PhD
A documentary crew films the author and her young design team at the Lighting Research Center at Rensselaer Polytechnic Institute. (Photo courtesy of Mark Leder)
I never paid much attention to the thought process that went into lighting a home until it was time to build my own. When I built my first home 11 years ago, I relied on an interior designer friend of mine to place the lighting. My new home, the Universal Design Living Laboratory (which I described in the March 2006 Action), will be a national model for universal design. This time I’m doing [...]
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