Ask the Experts about Daily Living with a Spinal Cord Injury (SCI)

Answers to questions submitted by March 10, 2006. Requests for more questions will be asked for in the future.

Disclaimer

"Ask the Expert" is an informational and educational program provided by National Rehabilitation Hospital ("NRH") to provide general information on spinal cord injury. Information posted on the "Ask the Expert" site is provided solely for informational and educational purposes only and is not intended nor implied to be the diagnosis or treatment of a medical condition or a substitute for professional medical advice relative to your specific medical conditions. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding your medical condition.

Brenda Gilmore
Ms. Gilmore is a former nationally ranked wheelchair tennis player and has remained actively involved in teaching tennis to able bodied and physically challenged members of her community. She is a graduate of Howard University. She currently works as a research assistant and SCI Life Consultant for the RRTC. As a research assistant, Brenda provides consumer input, assists with identifications and recruitment of study participants, and helps to manage data. In her role as the SCI Life Consultant, she trains and works with the peer mentors and assists in providing consumer education to health care professionals.

Russ Holt
Mr. Holt works with the RRTC SCI Peer Mentors. He currently serves on the Board of the Spinal Cord Injury Network, the local Washington, DC chapter of the National Spinal Cord Injury Association. Since becoming paralyzed in a 1986 auto accident, Mr. Holt has become a well known advocate for people with disabilities. After college he began to work at Montgomery County Crisis Hotline as a volunteer counselor, which led to a job at the Independence Center of Northern Virginia, where he was employed as a Peer Counselor. During this time, he also taught Transition courses to students with disabilities at TC Williams High School and Loudoun Valley High School in Virginia. In 2000, Mr. Holt launched Access Information, Inc. which runs DisabilityGuide.org, a website devoted to reviewing the accessibility of restaurants and bars in the greater Washington, DC metropolitan area.

We would like your feedback and suggestions.

Question: I'm a stroke survivor. I need help getting a one floor ranch house with a fenced back yard for my animals and van that I can drive and have my wheel-chair with me. I would like to be independent again. I would like some kind of business that I could earn money and stay independent. At one time I was a useful member of society and I would like to be again. Now, I need some help and would appreciate any given my way.

Answer: It sounds like you are all ready to become independent! The best places to go for people with disabilities who need help achieving their independent living goals are Centers for Independent Living. To find one in your state, go www.ncil.org.

Question: Thank you for your valuable input regarding information on SCI, the desires of people affected with SCI to join a wheel-chair sport, and related information.

I am a consultant and an advisor for physically disabled community providing voluntary services for the last couple of years here in Karachi, Pakistan.

One of the areas for which I would like your valuable advice is wheel-chair sports for the physically disabled, including those with SCI.

Questions: Would it be possible for you to provide information as to what type of wheel-chair sports can be advised for physically disabled community, including those with SCI?

Can the wheel-chair sports be made possible with normal wheel-chairs (standard non-motorized), or will special wheel-chairs have to be developed?

Is there a special requirement for the floors for the respective sports for the physically disabled or are standard floors suitable?

I would truly be obliged if you guys can provide answers to the above queries. In turn, this information would enable me to convert into a practical venture for the physically disabled community. Thanks once again for the excellent work for a community that remains neglected especially in countries such as ours. Best of regards to everybody at ILRU.

Answer: Spinal cord injured individuals that can use manual wheelchairs can play a number of sports. Currently, some of the most popular wheelchair sports include basketball, tennis, track, hockey, and quad rugby. While you can start to learn these sports in regular manual wheelchairs, there are wheelchairs that are specially designed for each sport that allow for greater speed, and less excursion of the player.

The floors, courts and tracks for these sports are the same as those for able bodied athletes. In addition, many wheelchair sports have a national organization affiliated with them that can give you rules, guidelines and schedules for competitions.

I would suggest a great wheelchair sports publication, Sports ’n’ Spokes. They also have a website with information about wheelchair sports and athletes www.pvamagazines.com I hope this helps. Good luck with your efforts to get wheelchair sports started in Pakistan!

Question: I'm a sales consultant for Ride-Away Handicap Equipment. Ride-Away is the Nation's largest modifier of vehicles for people w/ disabilities. We have 9 locations throughout the East Coast and provide everything from spinner knobs to hi-tech driving equipment to wheelchair accessible vans (full & Mini). I was hoping one of you could give me a call to discuss the possibility of me helping you w/ this project. I think I may be able to help people w/ an SCI make the right decision when it comes to a new vehicle. Too many times has a person gone to a car dealership only to have some car salesman sell them whatever's on the lot and not what's best for the customer. I've had the unfortunate situation of hearing from several customers that "the car salesman told me it could be modified". I'd like to help educate them to make the right decision. Please feel free to check out our website www.ride-away.com. I look forward to hearing from you.

Answer: I don’t know how people with disabilities lived before the advent of accessible vans - not just driving with a disability, but accessible cabs as well! You’ve picked a great product to sell - keep up the great work!!

Question: I had a C-6 incomplete SCI almost 16 years ago. There are very few things I can't do independently (I won't bore you with the details of what I can & have done). I've had an idea of consulting for hospital's, rehab's, and businesses relating to SCI and other persons with life changing disabilities. I completed a Bachelor degree in 1994 and have worked at CIL's 9 of the past 12 years. Would you be willing to offer advice in my plans? I look forward to hearing from you.

Answer: It sounds like you have great experience and the background to be a consultant in the area of SCI. I think if you put you resume together and offer your services free to a few agencies or hospitals in your area, asking them for feedback, referrals, and letters of recommendation in return, you would start to get an idea of the feasibility of such a prospect. Then with resume, recommendations and referrals in hand, I would start the search for organizations that would benefit from your knowledge. Good Luck. Let us know how things work out.

Question: On May 12th I will be celebrating 50 years of living post C5-7 SCI, more than both these folks combined. What's more, I wasn't involved in sports nor did I ever exercise. I was never employed by a non-profit or government agency. I was a successful businessman.

Answer: On behalf of SCI folks everywhere, thank you! Thank you for serving on boards and starting centers where you can share your vast knowledge with those who need it!

Question: My question would entail exercise in general and at home without medical insurance. It seems as though I have gained so much (stomach) weight because of being much less active. My injury is neck related; I cannot put any pressure on it, which also includes much less use of my upper body. Thanks so much, in advance.

Answer: It is imperative that you check with a physician before engaging in an exercise program or physical activities. This will help ensure that you do not further injure yourself. I personally have been able to prevent injuries during exercise by consulting with my physiatrist. If obtaining medical insurance is a problem, I suggest you use the “Google” search engine (www.google.com) and then type in “low cost health insurance”. There are a number of sites that can help you meet your needs.

Question: Please become an author at http://www.lgtinc.org and promote your work. Thanks.

Answer: Thank you for the invitation. I will keep you in mind.

Question: I don't have a question -- but wanted to offer the NWBA website as a place to go to look up team representatives for wheelchair basketball www.nwba.org and www.wheelchairsoftball.org/ for wheelchair softball.

I'd be glad to take referrals for wannabe jocks in our area (Kansas, Missouri, Nebraska, and Iowa) to help get them hooked up with a program.

Answer: Thanks for sharing your information.

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"Ask the Doctor" is an informational and educational program provided by National Rehabilitation Hospital ("NRH") to provide general information on spinal cord injury. Information posted on the "Ask the Doctor" site is provided solely for informational and educational purposes only and is not intended nor implied to be the diagnosis or treatment of a medical condition or a substitute for professional medical advice relative to your specific medical conditions. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding your medical condition.