Post-Polio Health (ISSN 1066-5331)
Vol. 9, No. 1, Winter 1993
Marianne T. Weiss, PT
In the nearly ten years that I have been treating polio survivors, I have found that the people who come to my door for assistance usually fall into one of two categories. Some of these people have not had contact with a physical therapist (PT) since their acute phase of polio. Others have become frustrated and often seriously depressed after seeing several PTs and several physicians prior to coming to see me. They could not find someone knowledgeable about the late effects of polio and how physical therapy can adequately assist survivors in coping with these late effects.
It is my hope in this document to provide a twofold service:
I wish to describe the evaluation and treatment that a knowledgeable, skilled PT should be able to provide a polio survivor. By so doing, I hope to significantly reduce the frequency with which polio survivors are turned away from physical therapy clinics with the statement, "There's nothing we can do for you."
I would also like to give encouragement to survivors who have not yet found a PT who has been knowledgeable about meeting their needs. Hopefully you can go armed with the data in this article to request that certain services be performed.
Certainly many health professionals other than PTs can help to lessen the impact of the late effects of polio. In some cases, the services of other professionals overlap those of the PT. However, in this paper I will confine my comments primarily to PT services.
This paper is based on principles in the resources listed on the accompanying bibliography.* Some of the following concepts listed under "STRENGTHS" are derived from my own experience in treating polio survivors.
Why should you consider seeing a PT?
One excellent reason for seeing a PT in the absence of declining physical function is to undergo a well-rounded baseline evaluation against which future problems might be measured.
Individuals who have not experienced recent functional decline may seek the services of a PT so that they may be educated in ways to minimize the effects of their polio problems on their bodies. For example, a PT can set up a muscle-specific exercise program that can be used to normalize (to the extent that is possible) the biomechanic forces acting on the body. A PT can also serve to educate a person in lifestyle modifications that may make it easier for a person to function in daily life and may also help slow the progression of symptoms in the future. The PT may also recommend the use of certain appliances during activities of daily living (ADL) that might make it easier for a person to function.
Finally, the most common reason for polio survivors to seek the services of a PT is because they have noticed pain or functional decline in strength, flexibility, endurance, ability to walk, climb stairs, etc. Physicians must rule out the possibility that conditions other than polio are responsible for problems such as these. However, it is the PT who has special skills to implement programs to address the symptoms noted above.
How does one obtain access to a PT?
In some states, physical therapists are permitted to evaluate, or to evaluate and treat patients without referrals from physicians. In other states, referrals from physicians are required by law. In either case, almost always a referral from a physician to a physical therapist is needed for third party payers (insurance companies) to cover physical therapy services.
For people who live in relatively close proximity to one of the established post-polio clinics around the country, evaluation by a physician at one of these clinics is certainly ideal. A physician from one of these clinics can write a referral for physical therapy. However, if polio survivors do not live in close proximity to one of these established post-polio clinics or must wait a long time to obtain an appointment at such clinics, referrals to physical therapy in their own locale from their family physicians can certainly be appropriate.
Family physicians are sometimes hesitant to write physical therapy prescriptions because of lack of knowledge about polio or about specific instructions to write on the referral. However, all states accept simply-written referrals such as "physical therapy to evaluate and treat." A diagnosis must be written on the referral. If a physician feels comfortable making the diagnosis of the "late effects of polio," this should be written on the referral. Otherwise descriptive diagnoses such as, "postural dysfunction" "back pain," "gait disturbance," or "muscle weakness" may be listed.
Specialists such as physical medicine specialists, orthopedists or neurologists may prefer to write more specific instructions on the physical therapy referral. Hopefully, however, they have a good rapport with the PT with whom they are going to refer, and they will trust them enough to also write "evaluate and treat" on the referral in addition to their specific instructions. This allows the PT to use their expertise fully to address the patient's problems.
Choosing a PT
If you live near a physical therapist who is listed in the Post-Polio Directory published by International Polio Network (now Post-Polio Health International), of course attempting to obtain services from such a person would be optimal. If you do not live in close proximity to a PT listed in the Directory, I suggest that you look in The Yellow Pages, in a phone book under "PHYSICAL THERAPY," and call several offices in your area to determine if anyone is knowledgeable in any way about the late effects of polio. Most hospitals will also have the capacity to treat outpatients, and you may also consider calling a hospital physical therapy department.
If you are unable to find a physical therapist in your vicinity who has any knowledge of treatment of the late effects of polio, my next suggestion is that you inquire if there is anyone who is willing to learn about this problem. If you sense that a PT has a willingness to learn about the late effects of polio, share any polio-related information you have access to and share the information contained in this article with him/her. Then request that an evaluation be conducted and a program implemented based on this or similar information. You may also direct PTs to an article in the October 1991 issue of Physical Therapy magazine by Elizabeth Dean, PT, entitled, "Clinical Decision Making in the Management of the Late Sequelae of Poliomyelitis."
Nearly every polio survivor comes to health care providers initially with the hope – whether clearly evident or secretly buried – that someone will be able to "make me as I was." Because of this hope, some survivors are initially reluctant to hear about suggestions a PT may make regarding lifestyle modifications, equipment options, etc. Often, polio survivors consider accepting changes such as these as an act of "giving up."
I would encourage survivors to consider that the only true act of "giving up" is refusing to participate in activities and retreating from society. Any suggestions for changes in lifestyle or use of equipment should be viewed as suggestions for how to "get on with life," and survivors should attempt to look at these suggestions as a means of continuing their participation in society to the fullest extent possible.
Reasonable goals that may be possible to achieve via physical therapy intervention can include the following. However, the survivor and PT should work together to choose which goals should be worked on at any given time.
- pain reduction
- edema reduction
- improved skin integrity
- improved endurance for activity
- improved flexibility
- improved ability to move in bed/transfer
- stabilization of balance/gait
- possible reduction of rate of strength loss and improved ability to use existing strength
Polio survivors should recognize that their bodies may be especially sensitive to even subtle changes. Sometimes small interventions may result in huge positive benefits. For example, the provision of ¼-inch internal heel lift in one shoe may be enough to greatly minimize low back pain.
Other times small interventions may result in negative outcomes. For example, if the therapist would recommend providing a low back support to stabilize the pelvis and minimize back pain, the patient's ability to use the pelvis to assist with certain phases of the walking cycle might be impaired. Therefore, the survivor must be able to communicate fully any negative results that occur when interventions are implemented.
What is the moral of this story? Survivors should attempt to be flexible and should attempt to look upon recommendations made with an open mind. However, survivors should also recognize that several interventions may need to be tried before one might be found that is beneficial.
WHAT SHOULD YOU EXPECT in a physical therapy evaluation, and how should the results be incorporated into treatment?
In physical therapy school, students are taught all the components of the following type of evaluation. They are instructed to complete all of the components of the following evaluation on any body part that is affected by problems that the patient is being sent to physical therapy for.
Because polio is a systemic disease that initially invades the body from head to toe, polio survivors are at risk for dysfunction of multiple body parts. Therefore it follows that all these components of a physical therapy evaluation should be performed on all body parts for polio survivors. Comprehensive evaluations of this type can take as long as three to four hours spread out over three to four visits. (I am aware that some PT departments are not set up to allow this much time per patient. This may be another factor in your decision as to which PT to choose.)
Most polio survivors envision that certain of their body parts were minimally or not at all affected by polio. However, I think it is very helpful to survivors when a PT can evaluate the whole body and possibly confirm that certain body parts were relatively spared from dysfunction. Conversely, the PT may point out to survivors that certain body parts have been affected perhaps more than they thought. If this is the case, measures can be taken to minimize the effect of abnormalities.
After an evaluation such as that described below, the PT should sit down with the survivor (and family or other significant people, if the survivor so desires) to explain the results. A thorough explanation with a proposal of treatment options can take up to an hour. The survivor and others in attendance should be encouraged to ask questions they have regarding the results and the proposed treatment options. The survivor should then decide which option to pursue.
The therapist should compose a report detailing the specifics of the evaluation and the therapist's recommendations for approval by the referring physician. The therapist should work in conjunction with the physician to implement a program based on the results of the evaluation.