Dr. Glen Gillen Weighs In on 'Am I Losing Ground?'
Photo Courtesy of AOTA
Dr. Glen Gillen, professor & associate director, Columbia University, Programs in Occupational Therapy
The perceptions of many survivors and their caregivers is that they do regress. I’ve seen it multiple times. My feeling is that when people feel they’re regressing, it’s from different issues and not just from muscle weakness or a neurologic issue. When people finish therapy, there’s kind of a harsh reality in terms of what your new body is like and what you’re left with after rehabilitation. Several things occur when rehabilitation is terminated.
One is the development of depression, which is startlingly high. Most experts agree that about a third of survivors living in the community are clinically depressed, which leads to inactivity, which leads to not participating in life events -- not accepting an invitation to dinner or attend a wedding. That starts a vicious cycle -- lack of participation and further depression. Then you can have further weakness when not using your muscles. So, depression is one of the main issues that causes this feeling of regression.
There’s also the reality of deconditioning that results from not being able to engage in aerobic activity because of hemiplegia. This may also result in fatigue, which leads people to spend more time on the couch watching television.
Cognitive deficits may also contribute to this perception of regression. Many times the focus in rehabilitation is on movement and muscle retraining and walking and using your limb. But when people realize they have cognitive deficits and can’t do things they did prior to the stroke or return to work, that has devastating effects in terms of self-esteem.
Rehabilitation units, by definition, are safe environments, where the survivor is getting a minimum of three hours of therapy a day. You have at least two, if not four, therapists assigned to you, plus a nurse and physician, to maximize your potential and safety. When survivors leave that environment, they can feel like the rug is pulled out from under them when they go home and are faced with an unstructured environment with a new body.
All of those things can contribute to feeling like “I’m just not getting along as well as I was.”
The best strategy for getting beyond that is to engage in life as fully as you can. When I talk to survivors in our outpatient clinic, I say “Tell me about Monday. Tell me about Tuesday.” I hear a lot about getting ready for the day, and then they stayed in the house and didn’t engage on a social level or a leisure level or a cognitive level. It’s often waiting for the next therapy session, and that’s a mentality that is not going to make people feel they’re doing better.
The survivors who do best have specific goals that we can work on in therapy – I want to go to church; I want to hold a grandchild. They become the quality-of-life changers and people start to feel better about themselves.
I do believe that therapists should engage patients in some type of structured exercise program, and the best ones are group programs, community-based where people meet other people that had stroke and are working on similar issues, like walking groups in a shopping mall or pool therapy at a local community center. The group is motivational, but it’s also important to monitor the rest of the day because a 30-minute exercise session a few times a week is not enough to change overall performance.
What we do in therapy is important but working with survivors to schedule the rest of their day and the rest of their week to do their life tasks is just as important, if not more important, because that will carry over when the therapy is discontinued.
Taking a shower, dressing yourself, getting in the car with your family and getting to the little league game is therapy in and of itself. Sometimes the therapy is getting to therapy, like getting into the car, getting out into the community, making yourself look better for the day, getting out of your pajamas. That’s a very important piece of therapy.
To survivors who feel like they’re losing ground, you probably are losing ground, but not just from one thing. I would urge you to reflect on why you’re losing ground. Is it from a lack of engagement and a lack of activity? Does that relate to a cycle of depression -- stay in bed, do less and less and less? I encourage survivors to engage to their maximum potential and seek out therapy to help them to achieve their goals.