Appeared in
Without Prejudice, Volume 67, No. 8, April 2003
According to the "Aging with a Spinal Cord Injury" Article published in the June/July 2000 Issue of The Interdisciplinary Journal of Rehabilitation, people who sustained spinal cord injuries (SCI) lived almost as long as their non-injured peer group. Ms. Jean M. Leary, Program Administrator, and Dr. Mehdi Sarkarati, Medical Director, at the New England Rehabilitation Hospital (NERH), claimed that this was due to standardized protocols for emergency management, advances in acute medical, advances in surgical interventions, and research generated treatment approaches with acute rehabilitation and long term care options. If that holds true, then the quality of life, as well as the extension of life for people who sustained SCI should be improved.
Both Ms. Leary and Dr. Sarkarati noted that it was integral to prevent secondary complications common with SCI to minimize the effects of aging. They claimed for example, that respiratory compromise was one of the leading causes of mortality in individuals with SCI, especially during their acute care and later in life. They noted that there were increased incidences of sleep apnea as individuals aged with their SCI, and the other leading cause of mortality was urinary complications. Skin breakdown or pressure sores were more prevalent with aging, as the skin lost its elasticity and moisture; and therefore, an individual with a SCI would be more prone to months of bed rest, increased dependence on caregivers, or surgical repair. Fifty percent of patients suffered from heterotopic ossification which may be painful and could limit flexibility. Osteoporosis at the supracondylar femur diaphysis and femoral neck could lead to spontaneous fractures, and the chances of that happening increased with aging. Similarly, individuals with SCI were susceptible to pathological fractures of their shoulders due to overuse. In addition to the initial neurologic impairment, individuals were prone to syringomyelia, chronic pain syndromes, spasticity, contractures, and entrapment neuropathies such as carpal tunnel syndrome and elbow tunnel syndrome. Individuals who sustained a high level of quadriplegia, could experience orthostatic hypotension; however, SCI was not inherently detrimental to cardiac function. In fact, in some respects, SCI may protect the cardiac system, especially with individuals who sustained a high level of quadriplegia and who had low blood pressure; however, research identified a potential for cardiac atrophy and loss of ventricular mass in later years. A sedentary lifestyle, coupled with a high fat and sodium diet would have the same effect on anyone regardless of their situation, but individuals with SCI were prone to glucose intolerance and poor receptive insulin utilization. As part of the aging process, individuals with SCI could have difficulty with constipation, haemorrhoids, fissures, rectal prolapse, proctitis, megacolon, biliary tract stone, and colon cancer.
NERH claimed to have developed a unique approach to primary medical care; however, they did not "quantify" the aforementioned effects. For example, as SCI patients aged, there was a predicted increase for medical visits, ongoing nursing, therapy intervention, and psychosocial support, but they did not provide any statistical data to support their claim. They did mention though that of the seventy-five patients admitted to NERH in 1999, thirty percent were between sixty and ninety years old. Ms. Leary and Dr. Sarkarati felt that individuals with SCI not only lived longer, but they sustained their SCI at more advanced ages than in previous decades.
After reading about all of the aforementioned complications, it seemed to be enough to make anyone depressed about their future with a SCI. Regardless of the emotional perception of an individual's future with their SCI, Rehabilitation Practitioners such as myself grapple with projecting the amount of care an individual will require several years after sustaining their original SCI's; however, there is limited "hard data" to quantify the aging effects.
Dr. Daniel P. Lammertse, Medical Director at Craig Hospital wrote a paper entitled, "Maintaining Health Long-Term with Spinal Cord Injury" in 2001, which provided some of the missing data. For example, research on individuals who sustained functional paraplegia and tetraplegia revealed that 22% of the participants required more assistance with activities of daily living several years after their initial assessment. For example, additional assistance was first required at 49 years for participants with cervical injuries and at 54 years for individuals with lower injuries. Additional assistance with transfers was most commonly documented, followed by dressing and mobility; however, despite the reduction in function, 77% reported feeling "healthy", and 75% rated their quality of life as "good" or "excellent". Recent analysis of the National Spinal Cord Injury Database examined 439 individuals as they reached their 5th, 10th and 15th anniversaries after their initial SCI. Complaints of upper extremity pain went from 29.3% at year 5, to 54.2% at year 15; however, only 315 of the participants were followed during the subsequent studies as 5.5% of the original group had died, 7.3% had not completed their second assessment, and 15.5% had been lost or chose not to participate with additional studies. The general findings revealed that individuals reported less constipation, bladder stones, rectal bleeding and pain; however, they required more personal care. The 15 year participants who were followed 20 years post-injury, experienced more fatigue and urinary tract infections; however, with the exception of the need for additional assistance, comparison of the cross-sectional and longitudinal analyses yielded minimal correspondence. Dr. Lammertse attributed that to evolving trends in health care delivery and societal attitudes; however, he admitted that with a median age of 35 years and maximum duration of 20 years post-injury, many age-related changes may not have occurred, so there was a need for further longitudinal studies.
The most recent analysis of the National Spinal Cord Injury Database, revealed that the mortality rate for persons who were injured between 1993 and 1998 increased by 33%, compared to rates for those injured during the immediately preceding 5 year period. Unfortunately, further analysis did not produce any plausible explanation for that disturbing trend; and therefore, it reinforced the importance of understanding the causes of morbidity and mortality with patients who sustained SCI. It was interesting to note that over the 25 year history of the database, heart disease was the common cause of death at 18.8%, followed by 18.3% of external causes such as suicides, homicides and accidents. Respiratory conditions attributed to 18% of the mortality rate, and cancer represented 5.4% during 1973 to 1977; however, that increased to 11.9% for the last 5 year accounting. Urinary causes dropped from 6.8% during 1973 to 1977, to 2.3% from 1993 to 1998. Persons who sustained their SCI at an older age had a proportionally greater reduction in life expectancy than those who were younger. Despite all of the issues, the data supported Ms. Leary's and Dr. Sarkarati's opinion that persons with SCI lived longer. There was a fundamental shift in the distribution of mortality that was closer to the general population; however, Dr. Lammertse admitted that there was much about the process of aging with SCI that remained unknown.
Dr. Lammertse's article went on to address all of the issues that had been identified by Ms. Leary and Dr. Sarkarati; however, it countered that a healthy lifestyle, including moderate exercise, diet, no smoking and moderate alcohol consumption, should improve the quality of life for anyone, especially people with disabilities. Now, using the two aforementioned articles as a reference, it would seem that my own future looks bleak; however, I have never smoked and I underwent a sphincterotomy during my acute care to manage my bladder. This appears to be one of the healthiest choices for father management, as I have only sustained a maximum of 20 bladder infections over my 23 years of dealing with my SCI. In fact, all of my bladder tests revealed a very healthy bladder. As the statistics demonstrated, I was diagnosed with low bone density within my knees and hips; however, after increasing my consumption of calcium rich foods, my bone density increased by 9% within a year. I have since started taking calcium pills and the next examination will reveal if calcium supplements will further increase bone density. Similarly, I developed syringomyelia from C3 to C5; however, both my family physician and rehabilitation physiatrist indicated that the cyst probably occurred during the initial trauma. I have not lost any neurological function, and 2 MRI's over the last 2 years have not revealed any significant changes. Similarly, all cardiac tests have proven normal. Now, dealing with pressure sores has always been a battle; however, that can be attributed to a very active lifestyle and by being in my wheelchair 14 hours per day.
As Dr. Lammertse suggested, I have always exercised regularly which includes cardiovascular activities and stretching; and therefore, I would classify myself with the 77% of individuals with SCI who felt "healthy", and the 75% who rated their quality of life as "good" or "excellent". Only time will tell, but thus far, my care needs have not increased, and I have maintained a healthy lifestyle. I feel that periodic intervention by a client's treating physiatrist may head off potential problems before they become debilitating or terminal. For example, after having the first bone density examination, my research revealed that there appeared to be no known way of increasing bone density. It had not been proven that calcium supplements or that weightbearing exercises would increase the bone density; however, the increased calcium within my diet already has had a profound affect. It should be noted that every individual is different and may be predisposed to hereditary conditions that may worsen their condition; and therefore, further studies are required to investigate how aging truly impacts on individuals with SCI, before "hard numbers" can be applied.
