Am I Losing Ground?
After reaching out to readers on our Stroke Connection Facebook page, we heard from a number of survivors concerned that they are losing function after they leave therapy. For example, one reader posted:
I have long-term residual effects from my stroke. After numerous physical therapy series, I still seem to go downhill as far as residual left-side weakness, especially in the left leg, foot and ankle, and to a lesser degree, decreasing left arm and hand strength and fine motor function. I have gains through the PTs, then do the exercises, but the strength always leaves again.
Here we share the thoughts of two physical therapists, as well as input from occupational therapist Dr. Glen Gillen, exclusively on the Stroke Connection website.
Alison Lichy, P.T., D.P.T., N.C.S. | NeuroPT, Alexandria, VA
Do patients regress? Undoubtedly they do, but there are many reasons, and it’s important to know why so you can address the cause.
First of all, if you feel like you have regressed, a medical issue needs to be ruled out. This regression could be another stroke, a medication issue, depression or simply the lack of challenging or appropriate activity. Many things can cause a person to regress.
Immediate regression following inpatient rehabilitation is often expected. This can occur because the rehab facility is a different environment from your home. It can take time to assimilate to your home environment and routine. In preparation to returning home, communicate with your therapists about your home environment in order to set specific goals important to you and the challenges you will face at home.
Job #1 of therapy is preparing survivors to be as independent as possible in their home environment. For example, walking in the clinic on a hard surface may go well. However, if you have carpets at home with thick padding and there are obstacles, coping with this should be your goal for therapy and the task you are practicing. Getting patients and family members to set specific goals for their home environment and roles is crucial to progress.
Sometimes survivors feel that they’re regressing when in reality they have progressed. This occurs when you are participating in new or more activities with increased challenges. This is great! This is also a good reason to go back to outpatient rehabilitation to set new goals to help you succeed in your desired activities.
Because of the age of most stroke survivors, you might be fighting the battle with aging. Is the regression you feel a year or two post-stroke the result of getting older or is it the stroke or is it a combination? Either way, aging is not a reason to accept regression. This can be treated with therapy and exercise.
Another reason progress halts is that caregivers provided too much assistance. The caregiver has good intentions, but if the survivor does not participate in their daily routine or take on family roles, the survivor is unlikely to make progress at home. The best thing for loved ones to do is support survivors in doing as much as they can for themselves so when they have to do something for themselves, they can.
Regression often occurs because patients compensate with their less affected side. Clients say, “I used to be able to do this with my hand when I was in therapy.” This is because in therapy the focus was on using the affected hand, but when at home, to do something faster, they use the unaffected arm instead. As a result, the affected arm is not being challenged at home as much as it was during therapy.
Therapists send survivors home with appropriate exercises. It is important to do the exercises to the best of your ability, and if they are not perfect, that’s okay. Activity helps prevent regression. The best thing is for family members to encourage survivors to do as much as they can do on their own and provide assistance when appropriate. But by all means, keep doing the exercises, and when they get easy or you get bored, go back to outpatient therapy and get new ones.
If you feel like you’ve regressed, then you definitely have a reason to return to therapy, and it is appropriate for your insurance to cover your therapy. Your reasons for returning to therapy should be specific, such as “I can’t do a specific task in my home environment that I need in order to be independent,” or “I was able to perform a task previously and can no longer perform this task,” or “I have had a fall.” These reasons qualify you for return to therapy. Also, being specific with your personal goals helps the therapist set the plan of care and ensures you are getting the most out of your therapy visits.
Justine Mamone, P.T., D.P.T., N.C.S. | Kessler Institute for Rehabilitation, Saddle Brook, New Jersey
I think that the word regression is difficult to define when referring to the function of a stroke survivor. To me the word has a negative connotation when referring to function, and its meaning, “to return to a former or less developed state,” may not be appropriate when referring to these individuals. For survivors who feel as though they have regressed, it may be their perception of how they are doing now in a more challenging home environment as compared to how they were doing in a controlled rehab setting. There is no denying, however, that a survivor may have encountered a secondary complication such as a fall, pneumonia or even a urinary tract infection following their stroke that may impact their mobility and overall function.
Things may not have changed quantitatively. They may not necessarily require more assistance to do things at home than they did in rehab, but things may in fact be more challenging or not as qualitatively satisfying. They may feel that their walking is not quite as good as it was when they were walking under a therapist’s supervision providing them cuing and while walking on linoleum flooring with minimal clutter or environmental distractors. Back at home or in the community, they are challenged by walking on different surfaces with shoes rather than hospital socks and while in busy environments. They may then perceive that they are not performing at that same level because there are greater challenges surrounding them.
If you think of the level of intensity in an inpatient rehab, a survivor is being seen for three hours a day, if not more, with a skilled clinician to address the things that have changed following their stroke. Once released, they are going from three hours a day to potentially three hours a week in an inpatient or home care setting. Big difference!
Our programs are designed to prepare survivors for success at home, but there is a lot of emphasis placed on the importance of keeping up with the exercises provided to them and to maintain mobility on their own between sessions. This may be difficult as many have caregivers or family members who have returned to work, unavailable to help perform some of these activities or supervise them while on their feet. Without the same support and in a more challenging environment, they may not have the opportunity to progress as before. We try to provide home exercise programs that are not overwhelming in the number of exercises and making sure the exercises provided are the right amount of challenge that can be completed successfully and safely at home.
Another way to deal with this feeling of regression is to tailor therapy to prepare the individual for the specific challenges they may face in their own home. We do home evaluation and have the patient come along if possible. This allows the survivor, their family members and the therapy team to gain a new perspective on what it is like for the individual to be in a home environment with their new impairments. Ultimately, this gives us the chance to practice the skills required more precisely while in therapy.
Emotional, cognitive and social changes after a stroke may also contribute to feelings of regression or plateau in function. The presence of depression and decreased motivation often seen following a stroke can greatly impact a survivor’s drive to continue staying active and can lead to some decline in function. They may also not have the encouragement and support from a caregiver or family member, which will also impact function in those who need the additional support. Another contributor to post-rehab decline in function is compensation, not challenging the affected limbs and finding a way to complete activities with greater ease. In rehab we emphasize the use of the affected limbs as much as possible, but once at home it’s likely that without the reinforcement a survivor will find ways that may be more efficient and easier.
The most important thing for a survivor to do to promote continued recovery, maintain function and prevent compensation when recovery is still possible is to be open with their therapist. Providing them with information regarding their personal goals in order to make gains that are meaningful to them. Also, informing the therapist on their response to the exercises they have been given will increase the likelihood of compliance with these exercises, resulting in continued progress.
One thing that survivors can do to maintain their goals outside of therapy services is to participate in community-based programs. Here at Kessler we have group fitness classes that allow individuals to work with other survivors who can provide encouragement and support along the way. I think these programs are great from not only a social aspect but also to keep people motivated and on their feet when they may no longer have the opportunity to continue with therapy or in addition to therapy.
For survivors who feel as though they aren’t progressing or, in fact, are regressing, remember how vastly different a rehab setting is from home and that perhaps what you are experiencing isn’t truly regression but instead adapting to a new environment. A good way to maintain your goals is to continue to set goals for yourself, just like you did in rehab, and keep working toward them. Additionally, joining an age-appropriate stroke support group could be beneficial in helping you stay on track and motivated.