Julie Entwistle, MBA, BHSc (OT), BSc (Health / Gerontology)
I think this is a great story. My husband and I were in Orange County New York. My husband was knocking “flying in a MIG” off his bucket list and I was there to watch (nervously). The pilot of the MIG was telling us that the guy whose plane was in the neighboring hanger was an unassuming and humble Hollywood director with multiple Oscars. Cool! Well, just before take-off the director arrives. Amazing! He never comes on a Friday. As my husband launches away at some crazy speed, I approach the director and tell him that I am a fan of his movies. He is flattered and we enter into a conversation that he somehow turns into being about me. When I tell him I am an Occupational Therapist he discloses that his son was recently diagnosed with a SCI after spinal surgery. How awful. I explained that this is actually my area of practice. We spend the next hour talking about SCI and I filled him in on all the latest research from the Rick Hansen International Conference I had just attended. I tell him about some of the great devices available, American organizations to talk to, and specialists in the field, and he gives me his personal email to send him links and to stay in touch. He was elated. He had no hope, no knowledge about his son’s condition, and didn’t know where to start. I was shocked. Shocked that a man with that kind of money, connections, and seemingly unlimited access to resources would not know where to turn, and more shocked that someone so famous found something I said useful. Since then we have kept in touch by email and every once in a while I send him resources and magazines I think he will find helpful. I am still blown away by that encounter, and definitely found that exchange more exciting than some plane that flies really fast.
According to Spinal Cord Injury (SCI) Ontario, there are 600 new cases of SCI in the province per year, and 85,000 people living with SCI across Canada. Of new injuries, 42% are the result of trauma (falls, accidents, or violence), and 58% from non-traumatic causes (tumors, infections, diseases). The extent of a SCI injury is classified by the resulting impairment, with tetraplegia (or quadriplegia) indicating that all four limbs and the trunk are involved, and paraplegia is when the trunk and legs are impacted but the upper extremities are not. Contrary to popular understanding, quadriplegia does not mean “no use of the arms” it just means the arms are involved, and the amount of usage will depend on the level of injury. The incidence of SCI is highest in adolescents and young adults from sporting injuries, car accidents and violence, then peaks again in seniors as the result of falls.
While the direct consequence of SCI is severe – mainly the inability to walk, bowel, bladder, and sexual dysfunction, and sometimes reduced use of the arms and hands, the secondary consequences can be just as devastating. Physiological changes in temperature regulation and circulation, pressure sores from reduced sensation, weight gain, repetitive strain on the upper extremities as they become used for transfers and mobility, urinary tract infections, bowel issues, and of course the emotional side of adjusting to wheelchair use and reduced physical abilities are all common.
As a clinician with special interest in the field of SCI, spending the last 10 years of my career treating individuals with these problems, I have been able to gather a list of very helpful resources and equipment that most clients find useful. In recognition of SCI Awareness Week, I wanted to share my top picks here.
Standing Wheelchairs – these chairs provide significant benefit to an individual with a SCI. Allowing people to stand and bear weight through the legs is known to improve circulation and bone density, along with the added benefits of allowing someone to reach upper cupboards again, or to look people in the eye when talking (as an example, check out the Lifestand Helium chair online at http://www.permobilus.com/heliumls.php.
Free Wheel – for manual wheelchair users, terrain such as snow, gravel or sand can be difficult, if not impossible to manage. The free wheel is a simple add-on that elevates the front wheelchair casters to make these terrains easier (http://www.gofreewheel.com/).
Smart Drive – manual wheelchairs can be difficult to use for long periods as our arms were never designed to be our source of mobility. So, some people use a manual wheelchair indoors and for short distances, and a power wheelchair for longer distances and outdoors. The Smart Drive bridges the gap between manual and power chair by providing a power-assisted method of propelling a manual chair. This is helpful for long distances, up inclines, or to just get places faster. This is another simple add-on and only weighs 11 pounds making it easy to take on and off. In Ontario it is also now approved by the Assistive Devices Program. Check out http://www.quarthealthcare.com/index.php/smartdrive for more information.
Sensi-Mat – Pressure sores can be a significant problem for people with SCI as they lack feeling in their lower body that would normally tell them to shift their weight to relieve pressure. Without pressure relief, areas of the skin can die due to lack of blood flow. If not treated, the sore can bury deep into the skin and underlying tissue, become infected, and treatment usually involves sitting restrictions, significant bed rest, or even surgery to correct and cure. The Sensi-Mat works to prevent pressure problems from occurring by providing the wheelchair user with data about their sitting patterns, including cuing about when to shift their weight. If an ounce of prevention is worth a pound of cure, the Sensi-Mat is a must for all people with SCI. This new product will be available in June 2014 (http://www.sensimatsystems.com/).
SCI University – This is an online resource created by people with SCI to help others understand how to manage the many aspects of this condition. Covering everything from nutrition to catheterization, this is also a “must check out” anyone with a SCI (www.sci-u.ca).
Abilities Magazine – This circulation is packed with useful resources, inspiring stories, and solid examples of people with SCI who are achieving amazing things. Each issue highlights things from travel to sports and work, and includes helpful tips for not only disabled people, but is also very informative for the general public and rehabilitation professionals (http://abilities.ca/).
People in Motion – this free show, held on the first weekend of June in Toronto is packed with vendors highlighting the many wonderful products that exist for people with disabilities, including those with SCI. From vehicles to home accessibility and wheelchairs, this is worth the drive to Toronto (http://www.people-in-motion.com/).
Of course, no person will experience a SCI the same, and the recovery from this, and ability to function safely and independently following, will depend on multiple factors. Custom problems need custom solutions so if you have a SCI considering contacting an Occupational Therapist with experience in your condition to get solutions for living!