Post-Polio Health Care Considerations for Families and Friends

Post-Polio Health International

post-polio.org  polioplace.org

 
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VI. Professional Assistance

Many polio survivors feel that health professionals are unprepared to treat them and carry with them a level of distrust. Because of passage of time, it is unreasonable to lament that my physician "never saw the original polio." Asserting, "post-polio is never taught in medical school" is counterproductive. Medical schools teach about the acute polio infection and that it results in residual weakness. In the past, health professionals thought that polio weakness was static or stable, but most professionals today know from research and observation that it can be slowly progressive.

Many physicians are aware that there can be new weakness, but they have not seen it in many of their patients. In fact, many have never treated a person who had polio, which is why PHI makes resource materials readily available to both health professionals and lay people.

While some of the lay post-polio literature emphasizes the uniqueness of the medical problems of polio survivors, it may be overemphasized. The advice and procedures for treating common medical problems for those who did not have polio are the same for post-polio people. However, it is important to advise medical professionals that your parent or friend had polio (a neuromuscular disease), so they can integrate this knowledge into a treatment plan. If your loved one has a "post-polio physician" or a pulmonologist, who monitors their breathing status, always seek advice from them when facing other medical issues. Families are encouraged to facilitate actively the connections between the medical specialists involved in the care of polio survivors.

Start with the family physician. Following is a list of other health professionals who you may call upon.

A. Family Physician

Health care reform is leaning towards the coordinated care model. A primary care health provider (nurse practitioner, physician's assistant, family medicine doctor or internal medicine doctor) most likely will be the coordinator of your loved one's health care.

Getting to know a primary care health provider, and them getting to know your parent or friend as a person as well as a patient, can be very valuable and assures prompt appointments in an emergency. Established patients generally have priority over unknown patients when the schedule is busy.

Primary care physicians perform certain technical procedures, determine what is wrong, and offer reassurance, after an annual physical, that many things are very right. They also provide advice on how to take care of problems or to stay healthy.

Not all primary care physicians know about polio or post-polio. Some are willing to learn and some are not.

Value a physician who says, "I do not know" and who gets out the books or gets on the phone and asks someone else. A physician who says they know it all is one to avoid. (At least 50 different high blood pressure medicines, about 100 different antibiotics, and 40 different birth control pills are now available.)

Most primary care physicians schedule a patient every 10 to 20 minutes. Schedule more time if there are many issues to discuss. Many now have at least one exam table that goes up and down. Advise them if your loved one will need it, so they can schedule it.

Write down questions and concerns. Don't save the most important issues for the end. It is also helpful to bring a list of medicines and dosages. Take in medicines. Take in the facts.

It is also useful for the primary care physician to know the number and type of orthopedic surgeries and the respiratory history, i.e., in an iron lung during the acute phase of poliomyelitis, use a bi-level device at night, etc.

Some primary care physicians return phone calls and will most likely continue to do so, if they know that you will respect their time and keep the conversation short.

More ...

The Primary Physician (Post-Polio Health, 1995)

B. Health Care Specialists

There is no official certification for a "polio doctor." The most common use of this informal designation is a physician with knowledge, experience and interest in evaluation and treatment of polio survivors.

Given the most common new disabling medical problems of polio survivors, physicians with expertise in neuromuscular disease management that includes the ability to recognize and treat chronic musculoskeletal pain and respiratory problems are ideal. The specialty background of these physicians is most commonly neurology, physical medicine and rehabilitation, orthopedics and family practice.

Polio survivors do not need to see a "polio doctor" to receive good care. However, if your loved one is experiencing a series of new unexplainable and disabling symptoms and is unable to obtain satisfactory help, then seeking an evaluation by a polio doctor/post-polio clinic can be very helpful. These physicians most commonly will provide consultation services to your parent's primary care physician and may provide continuing comprehensive followup of post-polio related problems.

Many survivors need a network of medical providers (orthopedist, pulmonologist, orthotist, physiatrist, neurologist, etc.) and may need help with coordination and communication among them. A primary care physician can fill this role, although many polio survivors do this function themselves, because they are sufficiently sophisticated with medical and rehabilitative issues. You as a family member may need to assume this role at certain times.

The best way to frame the issue is this. Are current providers meeting the medical and rehabilitative needs of your loved one? If they are not, then specialist consultations are appropriate. If they need a comprehensive evalution of medical concerns and functional changes, then seeing a "polio doctor" is invaluable.

Here is a list, in alphabetical order, of specialists who may be involved in post-polio care.

Behavioral health specialists are psychologists, social workers, licensed counselors, marriage and family therapists, or even members of the clergy. All behavioral health specialists know about depression, anxiety and coping with life changes. Some have a special interest in working with the elderly, people with disabilities, and/or trauma survivors. Rehabilitation psychologists and counselors and geropsychologists are examples of specialists in the first two areas.

Geriatricians have special training in treating the elderly. They focus on improving the health, independence and quality of life of older people. There are 6,400 "geriatric specialist physicians" practicing in the US, and they may be hard to find, but the field of geriatrics includes not only physicians, but physicians' assistants, registered nurses, nurse practitioners and long-term care nurses.

Medical social workers (MSWs) provide psychosocial support to individuals, families or vulnerable populations so they can cope with chronic, acute or terminal illnesses. They also advise family caregivers, counsel patients and help plan for patients' needs after discharge from hospitals. They may arrange for at-home services, such as meals-on-wheels or home care.

Neurologists are physicians who diagnose and treat disorders of the nervous system. They address diseases of the spinal cord, nerves and muscles that affect the operation of the nervous system. An important aspect of a neurologist's daily duties is to offer advice to other physicians on how to treat neurological problems.

Occupational therapists (OTs) enable people to live life to its fullest by helping them promote health and prevent – or live better with – illness, injury or disability. OTs work in hospitals, skilled nursing facilities and other places that treat people who are aging, and in rehabilitation centers and health and wellness facilities. They assess how a person accomplishes tasks and suggest better ways. Such tasks include getting on and off the toilet, in and out of a car, chair or bed, swallowing and driving, etc.

Orthopedists are physicians who specialize in the diagnosis and treatment of disorders of the bones, ligaments, tendons and joints. Setting broken bones, repairing and replacing joints (such as knees and hips), straightening spines and developing prosthetics to replace body parts are specialized skills of this specialty.

Orthotists (a.k.a. certified orthotist – CO; certified prosthetist and orthotist – COP; certified prosthetists – CP) evaluate and treat musculoskeleteal disorders by designing and fitting custom-made orthoses or braces. Orthotists work to restore mobility and prevent or limit disability. Be aware that no one specialty "owns" bracing anymore and many specialties get very little training in prescribing braces. However, bracing is always included in the training of physiatrists. Check with the insurance company to see which medical specialty needs to write the prescription.

Physiatrists, or physical medicine and rehabilitation (PM&R) specialists, are physicians who are experts at diagnosing and treating pain and at maximizing function lost from injury, illness or disabling conditions through provision of non-surgical treatments and coordinating a team approach with other physicians and rehabilitation professionals. They treat the whole person and focus on not only treatment but also on prevention.

Physical therapists (PTs) help improve improvement and alleviate pain as an alternative to surgery or pain medications. PTs also treat new weakness and loss of mobility for tasks such as walking, climbing stairs and transferring. They teach patients how to prevent or manage a health condition, and are uniquely qualified to help design appropriate fitness programs to promote health and wellness. Physical therapists provide care for people in a variety of settings, including hospitals, private practices, outpatient clinics, home health agencies, schools, sports and fitness facilities, work settings and nursing homes.

Pulmonologists are physicians who specialize in the diagnosis and treatment of diseases and disorders of the lungs and respiratory system. Because of the variety of clinical problems encountered, they have knowledge of internal medicine. They are also known as respiratory physicians and respirologists.

Respiratory therapists (RTs) work to evaluate, treat and care for people with breathing disorders. Most respiratory therapists work in hospitals where they perform intensive care, critical care and neonatal procedures. An increasing number of respiratory therapists work in skilled nursing facilities, physicians' offices, home health agencies, specialized care hospitals, medical equipment supply companies and patients' homes.

Speech and language pathologists (CCC-SLP), sometimes called speech therapists, assess, diagnose, treat and help to prevent disorders related to speech, language, cognitive-communication, voice, swallowing and fluency. Speech-language pathologists use special instruments and test to analyze and diagnose the nature and extent of the problems.

More ...

PHI's Post-Polio Directory (post-polio.org)

IVUN's Resource Directory for Ventilator-Assisted Living (ventusers.org)

C. Coordination of Care

Coordation of medical care is difficult while a loved one is in the hospital, because the physician or nurse focuses his/her attention on the crises, which is their area of expertise. The reality is that the attending physician is in charge but it may be difficult to get his/her attention. The other reality is that you have the right to ask or demand the name of the person in charge and the best way to connect with him or her.

It is equally important to coordinate care after your parent or friend returns home to be sure he/she recovers and pays attention to the advice received to avoid another crisis. Each facility has a "discharge planner," who is usually a nurse or a social worker. He or she is responsible for creating, organizing and implementing a plan for care at home.

Activities that need to be done before your family member goes home include procuring the new needed equipment (e.g., breathing device, hospital bed and safety equipment for the bathroom) and assuring all medications are ordered. Family members and attendants need proper training if they are to assist with medical procedures, such as changing dressings, using breathing devices such as ventilators and bi-level devices, and with providing any new physical assistance for activities of daily living, e.g., bathing, toileting.

The best option is to develop a coordinated plan of care now to ease stress during a crisis. There are numerous books, forms and gimmicks available for sale or free online to assist in organizing medical information. Medical records and personal health records (PHR) are not the same thing. Medical records contain information about health compiled and maintained by each health care provider, i.e., primary care physician, orthopedist, pulmonologist, etc. A PHR is health information compiled and maintained by someone about himself or herself or a loved one. More and more health insurance companies and HMOs offer online access to medical records or provide methods, forms, etc. to assist in keeping PHRs.

Pre-designed forms are ONLY useful if you complete them and keep them up-to-date. You or your parents may develop a unique method of compiling and sharing information. That is OK. Just be sure to do it.

The ideal situation is for polio survivors to organize it and give you a copy for safekeeping. Some polio survivors don't want their children to worry, so they are not honest about how they feel. Some don't want to "burden" their children. One approach is to point out that not knowing details IF anything happens would be more of a "burden" to you. Remind them that holding important information for safekeeping and later use does not take away their control.

Now would be a good time for you to think about your own health information. Have you collected all of your information and given it to those who will be there for you? Kudos to you if you have already done this! Just be sure to review the information from time to time or make changes in it as medications, physicians, health plans, etc., change.

  • For organizing general health information, visit this website http://www.myphr.com/ of the American Health Information Management Association (AHIMA).
  • For users of home mechanical ventilation, visit International Ventilator Users Network's

click on Take Charge, Not Chances logo to access information.

  • Think beyond the strictly medical when thinking about coordinating care. Would a home modification make life better? Have you researched the types of services available for people with disabilities and those who are aging in your parent's community? Explore the resources in the next section called "Plan for the Future – Don't Reinvent the Wheel!"

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