Ask the Psychologist About Managing Spinal Cord Injuries

Answers to questions submitted by October 29, 2004. Request for more questions will be asked for in the future.

Disclaimer

"Ask the Psychologist" 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.

We would like your feedback and suggestions.

Dr. Samuel Gordon of the National Rehabilitation Hospital in Washington, D.C.

Question: I’m a 29 year old C-7 quad who has been injured for 10 years. Last year I began taking baclofen for muscle spasms, and I had a horrible reaction to it. I was able to stop taking it this past June but subsequently suffered a manic episode which required hospitalization. Have you had any experience with individuals stopping baclofen and having psychological issues post-use?

Answer: Fortunately, the physicians with whom I work do a great job educating patients with SCI about the dangers of stopping Baclofen abruptly because it can have adverse effects such as psychotic-like symptoms in some patients. So at present I have not had any patients report problems such as the mania you experienced after discontinuing Baclofen. As you probably realize better than most persons, medications can have different effects on different persons, and I hope that you were treated respectfully for your apparent medication-induced mania. I certainly thank you for sharing your experience, and I will incorporate your information as part of the education process that all of us (patients and health providers) involved in SCI rehabilitation need on a continuous basis.

Good luck and hope that your current anti-spasm medication is working well.

Question: What does the psychological research have to say about aging and death in patients with spinal cord injuries? Are there any common psychological reactions to physical aging problems like advancing deformity and or pain? Must aging be a downhill depressing experience or can people with SCI's who have used wheelchairs for decades respond to aging in a positive manner? What is the leading cause of death in adults over 40 years of age with spinal cord injury? As a 45 year old male who has had a T-5 SCI since I was 22, I am very curious what to expect physically and psychologically as I age into my 50s, 60s, and hopefully 70s. Or can people with traumatic SCI live into their 80s and beyond?

Answer: The psychological research on aging and death in patients with spinal cord injuries (SCI) is constantly in need of updating, particularly because of the advances made recently in the medical/physical and psychosocial arenas for persons with SCI. Nevertheless, it is not unusual for many individuals who face advancing age to have heightened anxiety about how their bodies will hold up over time. This is not completely unlike the worries that able-bodied individuals face, but is more significant since depending on the injury level and completeness of paralysis, the persons with SCI has less options to combat the effects of aging (e.g., physical exercise). This has been shown in a recent Canadian study of women with SCI (Pentland et al., 2002). The need for studying the gender-specific impact of aging in people with SCI was also highlighted in a just released paper by McColl, Charliefue, Glass, Lawson and Savic in the journal Archives of Physical Medicine and Rehabilitation (85/3, pages 363-367). In the study women characterized their aging experience as "accelerated," while men characterized it as "complicated." Women reported more pain-related consequences, fatigue, and skin problems and more transportation problems. Men experienced more health problems, more diabetes, and greater need for changes in adaptive equipment. Older men and women with SCI spent their time differently, consistent with traditional gender roles.

Still the same advice that applies to able-bodied persons over 40 applies to those with SCI. This includes staying physically, socially, and intellectually active, and more important for the person with SCI keeping on top of your medical appointments. This is the best way to make sure that aging with SCI is not a downhill depressing experience. In some ways as we get older we can be an even more valuable resource, and as a person with 23 years of experience as a wheelchair user, I would encourage you to get or stay involved with SCI and other disability health awareness and advocacy efforts (such as mentoring newer or younger persons with SCI and participation in organizations of like-minded individuals), as well as regular recreational and physical fitness exercise (with the usual caveat of checking with your medical doctor first).

Other common psychological concerns as a person ages with SCI are degree of companionship and social support available, financial, and housing resources. The above suggestions related to staying active and involved can also help offset these concerns as you are more likely to develop a network of friends and associates who can be used as resources to prevent isolation and loneliness, and to ensure you have access to appropriate funds (including from paid employment) and assistance to cover your living expenses.

Regarding your questions on death and SCI, my medical colleagues tell me that the leading causes of death are (depending on the source and the level of injury) - pulmonary (e.g., pneumonia or pulmonary emboli/blot clot), cardiac, kidney, and septicemia. Given that you have a T5 level of injury, the pulmonary cause is somewhat less likely (and would probably move to #2) and cardiac would probably be first. Whether kidney problems factor in really depends on your history of bladder/kidney infections and method of bladder management.

Life expectancy is related to the severity of injury and age at injury. In general, the younger you are at the age of injury and the lower, less severe your injury the longer you can be expected to live. Given your age and level of injury it is certainly reasonable to expect that if continue to take good care of your overall health, you can live into your 70’s, and possibly into your 80’s with continuing medical advancements.

I hope that your next 30 to 40 years are both happy and healthy.

Question: After 12 years of marriage my spouse divorced me (he said he could not handle my spinal injury). My question is 2 part:

1) Does this happen in many cases where one spouse experiences some type of SCI during their marriage?

2) On a more personal level, do you think it would be wise to move to a warmer climate where I wouldn't be fighting the challenges of ice and snow now that I have to make a new life for myself - again! LOL. Any ideas for better climates with supportive groups/new friends?

Answer: I am sorry to hear that your spouse was not able to handle your spinal injury, and unfortunately this is not an uncommon phenomenon. My experience suggests that men seem to have a harder time adjusting than women when their spouses experience a disabling injury, and this may relate to women being stronger particularly in their ability to empathize, provide nurturance, and make sacrifices (which is critical in adapting to change) for the sake of loved-ones.

Regarding your second question, depending on your family/social connections, moving to a warmer climate can clearly have benefits most of the year. However, you should also consider factors that even persons without a disability have to think about when moving to a different locale (e.g., job opportunities, cost of living), and given your disability, you may want to check with the local center for independent living where you are considering to determine how accessible that community might be. I do not know all of the areas that would be ideal but in general, areas with warmer climates, do not have a great deal of hills, have accessible public transportation and sidewalks, have an active independent living center, and have a hospital system with spinal cord expertise is preferable. Some areas that come to mind include southern Florida, Phoenix, Arizona, San Diego, California, and Las Vegas, Nevada; however, again you would have to factor in cost of living and your own personal budget and family connections.

For more information on accessibility of various locales and their social and medical supports, you should contact the National Center for Independent Living.

Whatever you decide to do, I wish you well, and encourage you to keep your spirits strong.

Question: What tools/psychology do you use both physically and theoretically, to motivate your recently injured clients to do their physical therapy—or any exercise, between office visits?

Answer: Your question highlights a major challenge physical rehabilitation staff face on a daily basis, and I think that one of the first tools or strategies that psychologists and other professionals must use in motivating newly injured clients is empathy. This, however, must be done in such a way as to balance the identification with how the client may be feeling, with the need to infuse hope and belief that despite their current situation, things will improve but only with their collaborative effort with their treatment team. Such a balance is important because it can help a patient realize that we are not taking their situation of loss lightly, but that we understand the only way to overcome the loss is to work toward developing skills that will promote recovery of as much of what made life enjoyable as possible.

Of course, newly injured patients may have difficulty seeing the possibility of life as enjoyable if they are to be wheelchair bound and/or unable to move their upper extremity. Paradoxically, many of these individuals may benefit from strategies that fuel a certain level of denial by infusing hope of future recovery. This can involve educating them on research being done in the area of spinal cord repair, and the sometimes unexpected recovery that occurs over the course of the first 1 to 2 years after injury. With both of these scenarios, the patient may then accept the importance of working on physical therapeutic activities as a way of making sure that they would be in a position to take advantage of such recovery when (if) it occurs.

Also, many patients can benefit from interacting with or observing others who have had similar injuries and are now functioning and enjoying life in the community. Peer mentoring is probably the best strategy for accomplishing this, but we must be careful to pick the right time at which the newly-injured patient is best able to receive mentoring.

Finally, a strategy that I hope gets to the positive side of the patient’s heart involves invoking the role they play in the lives of loved-ones. This can mean encouraging to see how their physical progress and the overall health maintenance affects those persons who have supported them in the past, will support them in the future, and/or those persons who depend on the patient for support. The best persons to use in this strategy are the patient’s children (sons, daughters, younger nieces and nephews, etc.), and I typically deliver the message that children depend on us less for our ability to run or throw a ball, and more for the love and guidance that we provide with words and actions. Following through on physical therapeutic activities can then be seen as setting an example of perseverance that their children can follow for a lifetime. And for all loved-ones, the patient’s persistence in maintaining optimal health provides a sense of comfort that the person that they knew before the injury has not changed in the essential element of life – the will to live and make the most out of what life has to offer. I believe that at some level, all patients know this, but with all that they are going through they may need frequent reminders to motivate follow through after leaving the presence of their therapists (who often have to take on informal role of life coach and cheerleader).

I thank you for your question and wish you well.

Question: How do I handle my rage at the inadequacy of health care options for persons
with spinal injury who live in rural areas?

Answer: Obviously, SCI does not occur solely to individuals who happen to live in an area where there is a certified SCI specialist. Also, it seems evident that persons with SCI are most likely to avoid additional grief if they can remain in their own homes, identify a circle of support among existing friends and family, stay in their local communities, etc., rather than relocate to an area that has a team of certified SCI specialists but only hired help to deal with activities of daily living.

Question: How do I deal with the fact that physicians in rural areas seem to be completely oblivious of relatively likely but potentially life-threatening conditions like autonomic dysreflexia that can occur in individuals with SCI, and what to do about other unique but likely effects of SCI?

Answer: I appreciate the frustration you must experience when you are confronted by a health care system that knows little or nothing about spinal injury. I say this because even in major metropolitan areas such as Washington, DC, I frequently hear my outpatients complaining about how they have to advocate for themselves with, and educate community physicians about the unique needs of persons with spinal injury. However, it is critical that as a consumer of health care services you take on the roles of teacher and community activist at least on a part-time or periodic basis. These roles if done effectively (assertively, but without the intent of being antagonistic) can actually build a greater sense of empowerment. And when done collectively with others who have spinal injuries (sometimes using internet chat rooms, phone contact with local or regional independent living centers, etc.), educational advocacy can broaden the respect and understanding the entire community has for the unique needs and strengths of persons with spinal injury. Collective action can also help avoid burn-out as you share the burden and possibly use others fighting a similar fight as sounding boards against which you can vent. Ideally, your individual and collective efforts will lead to the development of genuine patient-health care provider partnerships. So as you persevere in your efforts to get you health needs met, keep in mind that part of your goal should be to develop relationships with providers where you are allies and not adversaries.

Good luck in educating the many non-specialists in spinal injury who I hope, in the spirit of the Hippocratic Oath that physicians take to help and not harm, really do want to help both able-bodied and disabled consumers of health care.

Question: One of the issues I am concerned about among persons with spinal cord injuries is the effect alcohol or drugs plays in the rehabilitation, acquisition of independent living skills, physical health, self esteem, etc.

A study group of primarily young unmarried male with at least a high school education found that 96 percent of patients with SCI admitted to pre-injury alcohol and illicit drug use and 57 percent admitted to pre-injury heavy drinking. Source: Department of Physical Medicine and Rehabilitation, Virginia Commonwealth University, Medical College of Virginia, Richmond, VA.

Yet, the rehabilitation facilities, centers for independent living, etc., do not address the cause of the disability, alcohol or drug use and failing to do so seriously impacts successful rehabilitation outcomes.

Do you have any recommendations or suggestions as to how these issues can be addressed?

Answer: As you are apparently aware, the problem of substance use/abuse with SCI is both important and difficult to treat, and this is largely because of society, in general, tends to condone the recreational use of the most commonly abused drug – alcohol. In some ways the hallmark sign of substance abuse – denial, is part of the way many of us practice disability rehabilitation. An ideal remedy for the overall problem of substance use/abuse and rehabilitation may be to conduct routine drug and alcohol screening with all patients, including toxicology tests of patients admitted to a program, and questionnaires given to the patient and a key informant (spouse, other relative, or close friend). However, such an intervention can be costly in terms of time and intrusiveness.

What may be a more viable option is to incorporate brief drug and alcohol screening questions as part of the medical and psychological assessment interviews. Also, when there is toxicology test results available (e.g., after a motor vehicle accident), the patient should be confronted with this information as a rationae for the strong recommendation that they be enrolled in formal treatment. At a minimum, all rehabilitation programs should incorporate or have a close association with a substance abuse education component that emphasizes the connection between substance use and disability, both before and after injury. Such a component should:

• Provide basic information on the effects of substance use on brain and body functions (e.g., increasing likelihood of skin and urological problems)
• Introduce AA/NA concepts (e.g., 12 steps and relapse triggers)
• Teach healthy alternatives to substance use (including therapeutic recreational and leisure management concepts and activities)
• Provide options for more intensive and long-term treatment (either within the program or by referral outside the program).

Also, whenever possible rehabilitation programs could have continuing education opportunities to remind staff of the relationship between substance use and physical rehabilitation, possibly using case studies, and/or data showing the effects of substance abuse on functional recovery measures and length of stay in the rehabilitation program.

I hope this information is helpful, and thanks for raising such a neglected area of the SCI rehabilitation experience.

Question: 20 year old T5-T6 incomplete SCI.
My son was a Pre-Veterinary Science major in college made the mistake of getting in a vehicle with someone who received a DWI after the accident. He had all the major injuries: closed head, flail chest and, of course, his back. The driver had a broken leg. I know he has much anger built up, but I’m not sure if it is at himself or the driver -- probably both. I suspected he is going through a depression period recently and he did finally admit it. He has resumed taking an anti-depressant which I was surprised because he refuses to take medications for anything. He will curl up and just hurt on those bad days. I feel he probably needs some counseling as well. He appears to want everyone to think he is fine nothing has changed. We live in SW Arkansas in the Texarkana, AR-TX area. Are there psychologists in this area who work with SCIs? I am hopeful he can get back on track and get back in school but the way things are right now he is not open to that suggestion at all. Looking forward to hearing from you.

Answer: Your concerns about your son appear well founded and reflect your good insight regarding the psychological challenges persons with SCI and other major sudden physical disabilities endure. While I am not familiar enough with the geography of Arkansas, I can give you contact information for mental health specialists working in the state who might either be able to help directly, or provide referrals to other specialist closer to your son’s needs. You can try contacting the following persons:

Kim Brown, MSSW, LCSW (Social Worker)
Arkansas Spinal Cord Commission
628 Malvern Avenue
Hot Springs, AR 71901
501-623-4479
kbrown@arspinalcord.org

Daniel Cook, Ph.D. (Psychologist)
Professor
Department of Rehab Education and Research
University of Arkansas
156 Graduate Education
Fayettesville, AR 72701
479-575-6426
dcook@uark.edu

Joyce C. Poole, MSW, LCSW (Medical Social Worker)
Social Service Department
Baptist Health Rehabilitation Institute
9601 Interstate 630-Exit 7
Little Rock, AR 72205-7201
501-202-7109

In seeking local counseling, you should consider both formal mechanisms (e.g., individual and/or group psychotherapy) and informal options (e.g., SCI support groups, recreational activities for persons with disabilities, and community-based disability advocacy activities including at independent living centers).

I hope the above information is helpful in taking the next step from antidepressant medication to behaviors that foster healthy community re-integration and a positive quality of life after SCI.