This United Spinal member says his two-wheeled wonder is his ticket to freedom.
By Alan Maccini
I am a 48-year-old male diagnosed with Cauda Equina Syndrome (CES) (a neurologic condition affecting the bundle of nerve roots at the lower end of the spinal cord) which was featured in the January 2008 issue of Action. My original prognosis was that I probably would never walk again. Fortunately, after many months of physical therapy and nerve regeneration, I progressed from a wheelchair to a walker, and now I can use a cane. Needless to say, I am very limited in where I can go since I waddle very slowly with my cane.
I started to look for other mobility options since I prefer to stand because it keeps my muscles stronger, fends off osteoporosis, causes me less pain, and improves my bowel/bladder functions. Of course I looked at the usual devices such as power chairs and scooters; however, my house was not configured for any of these types of devices, and a standing chair was overkill for my condition. So I continued my search.
I mentioned my dilemma to my physical therapist, who suggested I check out a Web site www.draft. org. One of the founders is a C-4 incomplete quad who uses a Segway as his mobility device along with his chair.
I didn’t know if I would be able to ride a Segway. I have limited mobility from the waist down and more importantly I do not have any planter flex and my feet are very numb. Therefore, I decided to rent a Segway to test it out. To my surprise, it was extremely easy to use. With its gyroscope technology, it actually balances itself.
Two weeks later I was a proud owner of a Segway which I named “Tarkus,” and it was my ticket to freedom. I could now motor around the house since it has the ability to turn within its own footprint 25½” by 25½” giving it a zero turning radius. I could once again join my wife bike riding and walking on the beach. Tarkus is very flexible accommodating activities inside and outside on various terrains. Air travel has become easier because I can use Tarkus from the car to the plane door. I also use Tarkus to watch the NFL Jacksonville Jaguars games in person.
The Segway is a “consumer product of universal design” and it is not FDA approved, hence it is not covered by insurance. Nor does the general public understand its use by persons with disabilities. Public perception is starting to change slowly with various news stories in print, television, and radio about Segway use by those with limited mobility. Those of us using a Segway as a mobility device believe its use is protected under the ADA. Attorney General Richard Thornburgh in publishing the first regulations in implementing the ADA consistently said that “there would be no exhaustive list of devices and services protected under the ADA because any attempt to do so would omit the new devices that would become available with emerging technology.” Nowhere is it mentioned that mobility devices had to be FDA approved.
I have found many more Segway users with a variety of physical limitations including MS, SCI, ALS, post-polio, arthritis, amputees, and many others. All of them find the Segway a great option to use along with their wheelchairs or canes.
Of course the Segway is not the answer for all people-no single device is-but for my condition and lifestyle it’s a natural fi t. I believe that with the Aging of America many will be looking for alternatives to what we perceive to be common place.
For me Tarkus has allowed me to live life almost as I did before my SCI.
Alan Maccini rides his Segway in Ponte Vedra, Florida.
