Peer Support Groups

Adjustment to injury is a long process, especially when coping with a traumatic injury like spinal cord injury (SCI). Adjustment is defined as “adapting to a new condition” and in the case of SCI this means establishing a new sense of self and a new life plan. Everything is different and individuals are experiencing loss in all aspects of their life including mobility, daily activities, work status, relationships, and future plans. At Rancho, I have recently helped to develop a monthly support group to assist individuals in coping with their injury. I thought I’d share a little about it with you.

Our support group invites anyone with an SCI to attend. This includes inpatients at our rehab hospital, outpatients doing outpatient therapy, and community residing individuals who have completed all therapy. The fascinating thing to me about this group is to see the number of individuals who are seeking support who have been injured for many, many years. Last month, we had two gentlemen who had been injured for over 30 years come to the group. I think this clearly demonstrates the challenges of aging with a disability.

At first, I thought that the group would mostly be accessed by individuals who were newly injured. After all, these individuals are dealing with the day-to-day struggles of “Where do I go from here?”—and I assumed the people that would need more help with coping. There are a lot of assumptions about adjustment:

• People assume that within 1 year a person will be “okay” with their injury. It actually varies greatly between people. Some individuals will never adjust, some will take a few months, some will take 5 years.
• People assume that everyone is depressed after their injury. In actuality, only 25-30% of individuals with SCI have clinical depression following their injury, but this most occurs within the first year. Likewise, individuals who cannot cope with their injury are most likely to commit suicide within the first five years, and suicide is the most common cause of death 6 months post injury.
• People assume that individuals with tetraplegia cannot adjust to their injury in the same way that someone with paraplegia can. Again, this is not true. Although individuals with tetraplegia are more likely to be depressed within the first year, they can adjust to injury to the same extent as invidiauls with paraplegia within 5 years.

I learned first-hand through this support group that coping with a disability is really a life-long issue. The support group offers a person a group of peers with a similar condition to relate to, as well as to bounce ideas off of and share methods of coping. Peer support helps an individual realize, “I’m not the only one going through this.” These individuals can provide more information about “real world” experience and knowledge than I, an able-bodied therapist, could ever provide my patients.

In the first few years post injury, the most difficult things to adjust to might be relationships and work-related roles. But later in life, issues surrounding pain or pressure sores might be more relevant. Regardless, individuals post-SCI need support throughout the lifespan, and that it what I hope this group will continue to offer for many years to come.

Am I a Teacher? Or am I a Therapist? (Elise)

I first became interested in physical therapy because it was a health-related profession. Science had always come pretty naturally to me, and I liked the idea of being able to help people. As I shadowed PTs in different settings (hospital, outpatient, schools), I began to realize and appreciate the relationships that PTs formed with their patients. Unlike physicians who are confined to what seems like 5-15 minute interactions with patients, PTs are given longer treatment sessions. What evolves when you can take the time to really listen and understand a person’s injury experience? A trusting relationship. It is this, which I find most rewarding about being a PT.

Now that I have been working in the field for over 3 years, I realize that my job certainly involves helping others through health promotion. But a lot of my job is actually teaching: teaching others about their body/injury, instructing exercise programs, educating about equipment options or environmental changes, and training others how to change their lifestyle to prevent re-occurrence or further disability in the future. In PT school, I knew I would have to come up with an exercise program for a patient, but I never thought too much about the method in which I would instruct them. Did I consider what kind of learner my patient was? Did I introduce the program in a meaningful way? From my experience, I now realize that there are many crucial components to effectively teach individuals new ways to move:

1. Patient-Centered Programs: The patient should be at the forefront of developing the exercise program. I can provide suggestions on what muscles should be targeted and typical methods for strengthening, however it is up to the patient to tell me: how often they can perform it; is the gym/home/outdoors a more effective environment; are others (family, friend, caregiver) able to help or do they feel better doing it alone? As a student, I would often assume that the exercises would be a priority for the patient regardless of how I set it up. Now I realize that in order for a patient to be compliant with their program, it must “fit” into their daily routine and not be overly time consuming (ex: giving a 30 minute exercise program of leg lifts and bridging vs. incorporating heel raises into putting dishes away in cabinets or standing balance exercises while brushing teeth). Similarly, in therapy when working on walking (gait training) or transfers, I need to consider what environments are most meaningful to the patient. Would they rather practice on a real couch or bed compared to the therapy mat? Would home training be more effective?
2. Individual Learning Strategies: The patient’s capacity and ability to learn must be factored in. Is the patient a visual learner, in which case I should write out the exercise program with pictures to present them? Is the patient a kinesthetic learner, who would rather just stand up and start doing the exercises right away? Is the patient an auditory learner who needs to verbally repeat the instructions and positions back to me for retention? These strategies come into play not only in instructing an exercise program, but also when teaching a patient a new way to transfer safely out of bed, or a different method for ascending/descending stairs.
3. Forget about Errorless Learning: An individual must be given an opportunity to make “mistakes” in movement. Errors help the brain to learn what went “wrong” and to make adjustments for the next trial. A teacher who interrupts the patient or is constantly providing feedback (verbal or tactile) on the nature of the patient’s performance is interfering with the patient’s natural feedback loop – and prevents the patient from learning through experience what feels “wrong” (less efficient) and how the ideal movement strategy feels.
4. Time for Reflection: The patient needs to be given time to reflect on their performance. What did they do well in therapy? What exercises felt good? What could they do better next time? Reflection is a key aspect for learing in any experience. It challenges the individual to critically analyze their technique and evaluate how it could be improved. After the patient provides their evaluation of progress/performance, then the therapist can offer their feedback regarding performance, as well. Reflection also helps to improve a person’s self-awareness. I try to ask my patients for a therapy goal prior to their next session. This helps the patient to take ownership over their program, as well as provides me with insight into what is most important for them in their recovery.

These are just a few of the ways that PTs need to consider their role as a teacher within therapy sessions. There are so many aspects of the patient that a therapist must consider in order to help a patient reach desired goals. The patient’s learning strategy is just one example of a way for a therapist to improve his/her interaction with the patient in order to maximize the patient’s outcomes within the plan of care.

"You can't teach an old dog new tricks..." (Elise)

I have heard this saying many times before: “You can’t teach an old dog new tricks.” Often it was used in response to trying to ask an older adult to try a different method/technology to complete a task, such as using a remote control for the television or trying to make phone calls on a cellular phone. The saying suggests that an older person who has a technique for doing something may either find it too difficult to learn something new or is not interested in trying a different way. Research shows that this is quite false—the brain is capable of learning new things regardless of age (or even certain injuries) due to neuroplasticity, which is the brain’s ability to generate new pathways or re-distribute neurons (cells) to perform functional or cognitive tasks.

This quote came to mind this week as I worked with some of my patients on the pressure ulcer management service. Patients who have been injured for many years are very different in therapy from those with new injuries. You might think this is a pretty obvious statement. As a physical therapist, it’s been interesting for me to try to define my role with the new patient population I am working with. For the past 2 years, I have been working with individuals who sustained a spinal cord injury recently. In fact, very recently—anywhere from 2 weeks ago to a few months prior depending on the severity of the injury and the number of medical complications during their acute care stay. I was almost shocked this week when I interviewed some of my patients on the pressure ulcer management service. The three main people I worked with this week have been living with a spinal cord injury for between 25-40 years! That’s quite a change! When I spoke to my patients regarding equipment preferences, transfer techniques, and pressure relief methods, they were quick to inform me about their routine and hesitant to listen to my suggestions for alternatives.

I am learning a lot about maintaining patient-centered care and compromise. During a seating evaluation with one of my clients, we discussed the need for a new power wheelchair. His old chair was completely worn down due to his living environment: daily navigation of rugged, unpaved, and hilly terrain on his ranch. In no time, he stated the name, make, and model of the rear-wheel drive power wheelchair he wanted. This was a surprised to me! I was so accustomed to my clients with “newer” injuries choosing the mid-wheel drive power wheelchair design; the positives of these chairs (in my mind) seemed to completely outnumber those of a rear-wheel drive chair. For example: the smaller turning radius and better suspension provide a smooth and more accessible model. My client would not budge. He was comfortable in how the rear-wheel drive maneuvered, familiar with accessing home and community environments in it, and had no desire to order a chair that was completely new and different. It makes sense to me now, especially knowing he had been in the other chair for 11 years!

Even if his choice was not “justified”, a patient-centered therapist will always allow the patient to make the ultimate decision regarding their care. Certainly, we can provide education regarding other equipment options, access to trial equipment for demonstration, and even suggest a network of current equipment users to contact. It is important to remember that our clients are the ones who will be using the equipment every day and have an extensive knowledge of their own body and living environments. I am looking forward to learning many things from my new patients, as their “injury age” provides them with a certain wisdom that I could not possess. I am certain that information and experience I gain will only help me to better serve and work with individuals who sustain spinal cord injuries at all aspects of the acuity continuum (acute à chronic).

Switching It Up (Elise)

One of the great things about being a PT is the many different patient populations we can work with and many different environmental settings (home, hospital, outpatient, nursing home). I find it a challenging and stimulating part of my job that I can be exposed to different patient diagnoses. Next week I'm moving to a new service at the hospital. Although I'll still be working with individuals post-SCI, my new caseload will include many other diagnoses including congenital diseases (spina bifida, cerebral palsy), multiple sclerosis, etc. I'm going to be the PT on the Pressure Ulcer Management Service.

Pressure ulcers are a serious issue. In addition to the above diagnoses, older adults are very susceptible to skin problems as a result of normal aging. The combination of thin skin (more prone to damage), low body weight (less cushion over the bones), decreased nutrition (poor nourishment to skin), less movement during sleep, and slower skin repair (by cells if skin is broken) places older adults at increased risk for pressure ulcers. Furthermore, diabetes and vascular diseases (common in older adults) decrease the blood supply to the skin placing it at high risk for damage. Finally, decreased mental capacity/dementia can make an older person unable to consider or perform preventative measures against pressure ulcers.

A pressure sore does not just occur out of "thin air"; it is generally preceded by illness or disease associated with weakness and debility requiring significant time spent in bed or in a wheelchair. If a person is unable to move around to shift their weight, or is not regularly turned in bed, excessive pressure on the skin over bony areas causes decreased circulation to that area and eventually skin breakdown. Pressure alone is not the only cause of sores; incontinence, shearing or friction (i.e. during transfers) are also common contributors. Some important means of prevention include: turning at night every 2 hours, performing regular pressure relief/weight shifting in wheelchair every hour, maintaining equipment (wheelchair cushions), keeping good hygiene, and eating a well-balanced diet. We stress these means of prevention with all of our newly spinal cord injured patients, and to individuals who are weak/debilitated at the hospital.

Pressure sores are graded on a scale from Stage I to Stage IV (most severe). I will be working with individuals whose sores have progressed to Stage III or IV; this means that the skin has been broken and the wound is very deep-- to the muscle or even the bone. After debridement of the wound (surgical cleaning) and/or "Flap Surgery" (which "transplants" a muscle from the lower leg over the existing wound), the patients require an extensive hospital stay. During the course of their stay, my role is to re-evaluate their current equipment (wheelchair, cushion, etc.) to ensure that it does not contribute to future sores. I can use a specialized computer system (Pressure Mapping System) to measure the pressure underneath each of the sitting bones of the pelvis. By placing a mat underneath the patient while they are seated on the cushion, I can immediately visualize on a computer the pressure differentials on the cushion to determine if it is the best option for the patient. [If you're interested in learning more about pressure mapping, check out: http://www.xsensor.com/medical-video.php. This is just one of many companies that have mapping systems available.] After I perform mapping, I can order a new cushion or modify their existing cushion. In addition, I will assess their current wheelchair for any repairs or changes that might decrease their seated pressures.

I'll be updating you on my switch to this new patient care area- and the great things I am learning and the challenges I am facing!

The Effect of Age on Adjustment to Injury (Elise)

I have been thinking a lot this week about how age can affect one's adjustment to injury. On the spinal cord injury (SCI) service, I work with individuals of all ages who are dealing with a tremendous loss of function and independence. Lately, I've observed a difference in how patients react to the changes in their bodies and in their lives.

In general, I feel like many of my young patients seem to more visibly/verbally express their emotions/feelings about the changes in their body. One patient in particular said, "I've barely even had a life. I was just starting to get out on my own and be my own person. Then this happened." A common theme with younger adults is how "unfair" the injury and situation is. In contrast, my older patients have more rarely expressed anger or denial in regard to their change in status. They seem to be more quiet in dealing with their body changes... and more accepting. Maybe they think that there were going to be changes to their body with aging anyway? Maybe it helps that most of the older patients are married, have had children (currently living at home or grown), worked a job, and got to see some of the world? Maybe they have more psychological resources to overcome life challenges because they have experienced more?

I decided to look to the literature this week to see what affect age has on adjustment post-injury. The literature does not support my hypothesis. A study by Krause et al. that examined adjustment over the course of 30 years post-injury showed that spinal cord injuries which occurred later in life resulted in an individual being more likely to have lower subjective well-being, poorer health, and a less active lifestyle. Dorsett et al. indicated that the two most significant factors leading to depression after SCI are 1) self-rated adjustment; 2) medical complications (pressure sores). Older adults are at higher risk for developing post-injury complications due to the aging nature of their systems: ex) less resistance of skin, less reserve in cardiac system, etc). Varma et al. showed that because older adults have more pre-existing conditions (ie. cardiac disease, diabetes, joint deterioration), their adjustment was less post-injury compared to younger individuals. It makes sense... but I was still surprised!

Certainly a number of factors affect an individual's response to injury: social support, educational level, employment history, financial resources, pre-morbid health, and prior coping methods (to name a few). The nature of the injury is also an important consideration: Was it a traumatic or gradual/degenerative? Was it violence-related, sport-related, or employment related? Over my years in working with individuals with SCI, I've come to realize that personality and outlook on life are probably the most crucial traits to adjustment post injury. Someone who can face adversity, have the motivation and desire to overcome many obstacles, have the willpower to set high goals, and to find positive in most situations-- they are the ones most likely to thrive post-injury. So maybe age doesn't matter that much after all...

The Homeless Patient (Elise)

Recovery following an injury is difficult for any individual—but especially for a person who is homeless. As an employee of a county hospital, I often work with individuals who are homeless with very limited resources. These patients present a challenge to the rehab team for many reasons: 1) Multiple health problems secondary to prioritizing safety, shelter and food over non-emergent health needs; 2) Addiction to drugs or alcohol; 3) Mental health conditions; 4)Variety of educational levels (especially if did not complete high school education); 5) Lack of discharge destination, especially if the individual requires physical assistance or cognitive supervision; 6) Limited access to transportation for follow-up care after discharge. Consider these characteristics and add to them age-- how many years has the individual been homeless? How is homelessness impacting the aging process?

One past patient who comes to mind is Luke. He presented to the hospital after being struck by a bicycle while walking on the sidewalk. Only 55 years old, Luke had a history of alcohol abuse, prior knee problems due to a fall a few years prior, foot pain and bilateral lower extremity neuropathy (likely due to exposure to extremes in temperature). He looked and moved like a man much older than he was. As a result of the accident, he sustained an incomplete cervical spinal cord injury affecting his ability to move both his hands and his feet. Following surgical decompression and fusion to decrease consequences of cervical stenosis, Luke presented to rehab. His goal for therapy was to “Go back to the streets and continue working to collect cans.”

As a therapist, it is my responsibility to provide patient-centered care. This involves finding ways to motivate a patient to participate in therapy and helping the patient achieve his goals. If Luke was going to be able to function on the streets, he had to be able to get up/down off of the ground, be able to bend over to pick up cans/items from the ground, and be able to cross the street in adequate time on the crosswalk. In therapy, we worked hard on walking: progressing exercises from walking on the treadmill with a harness to overground walking with a walker on level indoor surfaces to outside on gravel/sand/concrete. We practiced navigating sidewalks, crossing the street, and carrying items on his walker while on grass. We talked about the importance of following up in outpatient, however we reviewed essential exercises (and progressions) in case this was not possible.

As the therapy team continued to discuss his progress and his discharge status, we realized that he was not going to be ready to discharge to a “standard” homeless shelter. A shelter discharge requires that a person will be completely independent with physical mobility/self-care and be able to manage medications. Los Angeles has a great new program for helping individuals who are homeless integrate into stable housing following hospital discharge (due to the common lack of follow-up after ER/hospital admissions). This “recuperative care” program allows an individual to discharge to a special type of shelter which provides a wide array of services to individuals recently discharged from hospitals. The goal of the program is to provide follow-up treatment (including transportation to medical appointments), education, stable housing, and job opportunities. Luke was a perfect candidate for the program, and he was very receptive to discharging there. The rehab team (physical therapist, occupational therapist, social worker) was able to visit the facility with Luke to assess his ability to access different areas using a walker, and to provide equipment recommendations (tub bench for showering). We were very impressed with the facility’s cleanliness and commitment to each individual’s success. It was a very supportive environment. Through these types of programs, it may be possible to decrease some of the negative complications of homelessness on recovery from injury and restoration of health.

For more information about the Los Angeles Recuperative Care Program, refer to: http://www.jwchinstitute.org/recup-care.htm.

The Memorable Patient (Elise)

Every patient I meet in the hospital is unique. They each have their own story, their own goals. Every day, I am handed a challenge: find a way to gain a person's trust during (perhaps) the most traumatic time of their life. This is no easy task. Some days, it comes naturally-- other days, it can be an overwhelming challenge.

Today, I think to myself: What is the key to a meaningful patient-therapist relationship? If I think back to the patients who stand out to me most over my past 3 years as a PT, many fond faces come to mind. What are the characteristics of these patients that link them together as some of the most rewarding people I have had the pleasure to work with?

Sarah: A sweet, slightly overweight woman in her early 70s. From the moment I met her, her quiet voice and gentle laugh struck me. When I introduced myself, she asked me about how my day was going. It caught me off guard. It was clear she wanted to get to know me as person before she would work with me. She even asked about my family. Sarah was clear in her goal: go back home independently. "I never needed help before and I don't want to need help now. Look at me! Someone had to just take me to the bathroom. It's so humiliating." In therapy we worked hard: I acknowledged her desire for independence and acknowledged my desire to push her a little more each day in therapy. Always with a laugh, she'd say: "You want me to try what?!" And that's how we'd spend time together every day for a month: laughing, chatting about home, and walking... farther and farther.

Max: An athletic, tall man in his late 60s. Recovering from an aneurysm rupture, he was very confused and agitated the first time I met him. In fact, he was a bit scary. Because the aneurysm was in the area of his brain which affects the ability to understand spoken/written communication, he could not understand me and spoke in jibberish. On top of this, he was angry/agitated (which is common with brain injury because the brain does not know how to regulate all of the stimuli in the environment). The only way I could work with him was by letting him move around/explore his environment, and by using subtle non-verbals (hand on shoulder or reassuring smile). It was not pre-planned therapy; it was whatever Max was willing to do that day. His brain was healing quickly, though, and every day he started following simple commands more and communicating more. The most memorable day was a week later when I brought him outside to the basketball court. I had learned that he loved sports from his sister. When I handed Max the basketball, I saw a whole different side of him-- calm, smiling, dribbling the ball, and shooting baskets. Yes, he required help- but he started interacting and responding more. An hour later, when we got back to the room, he said to me "I loved this." Three words that couldn't have meant more-- words that showed that I had found a way to show him that I was trying to help.

Maria: A hard-working, friendly woman in her early 50s. She had a long list of medical problems: fibromyalgia, gall bladder flare-ups, uterine fibroids, and (most recently) a stroke. Maria had a lot on her plate- but always arrived to therapy early and with a smile on her face. Her determination was evident every day. But, I soon came to realize that she was having a hard time adjusting to her change in status. "At night, I cry sometimes," she finally told me one day. I reacted by reassuring her that it was okay to be upset, but that she had great potential to make continued gains. Together, we just sat and talked. Emotional support was going to be almost more important than physical improvement. This was a woman who had a lot of medical barriers that could have stood in her way-- but made the most of every day to improve her condition.

For me, each of these patients had certain qualities that made our relationships meaningful. With Sarah, it was her gentle nature, her bright spirit, and our mutual interest in one another's lives. For Max, it was meeting the challenge to communicate without words. For Maria, it was the importance of listening to one another. The patients whom I've learned the most from have been those who have challenged me to establish rapport, to think critically about their clinical picture, and to find a way to build their trust. But most of all, the most memorable patients are those who have overcome devastating injuries and strive each day to live life to the fullest. For them, I have only the deepest respect and admiration. I often ponder if I would respond to illness/injury the same way. At the end of the day, I feel privileged to have worked with these inspiring people as their therapist.