Post-Polio Syndrome

POST-POLIO SYNDROME - Lifestyle -

Attitudes
Adjustment in Lifestyle
Sex
Caring for Someone with PPS
Psychological Impact on the Person with PPS
Role Changes and Impact within the Family

ATTITUDES

To maintain a sense of well-being, one must keep a positive mental attitude to health. This attitude can be developed by planning a program that meets an individual's needs and changes in lifestyle.

Group counseling with other PPS people may help develop an acceptance of lifestyle change. The most important factor is to realize that you are not alone. Maintaining ones values, likes and self-worth will facilitate the process of developing positive mental attitudes. Finally, it is important for physical and mental well-being to have a balanced routine of work, rest and recreation.

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ADJUSTMENT IN LIFESTYLE

Changes in lifestyle may become necessary as the effects of PPS begin to manifest themselves. New signs of weakness, pain and fatigue may require the PPS person to adapt to a different lifestyle. For example, a person who was once ambulatory with walking aids may now have to rely on a wheelchair for mobility. Not all adjustments are this major. Sometimes the person only has to allow for more rest periods or cut back on the number of hours of working, etc.

Some helpful hints include :

Make realistic goals.
Plan a basic daily and weekly schedule (not too rigid, but flexible enough to respond to body needs).
Identify priorities - these are the activities that are unavoidable and/or pleasurable (demanding activities should not be scheduled for times when you are most tired).
Use of aids such as crutches, braces or household adaptations may facilitate daily function.

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SEX

The importance of one's sexual identity and personal intimacy with the partner/spouse should not be underestimated. An important fact to acknowledge is that acute polio and PPS do not have any effects on the reproductive system, pot–ency and/or sexual enjoyment. If any problems arise, the PPS person should not hesitate or feel embarrassed about consulting a specialist in this area.

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CARING FOR SOMEONE WITH PPS

Many people with PPS continue to function with only minor complications.

However some are less fortunate and require assistance from a caregiver. General guidelines include home and outdoor adaptations to facilitate daily activities and conserve energy. The care given must determine potential abilities and yet recognize there are things a PPS person is not capable of doing independently.

Daily Activities. The caregiver must consider what is important to the PPS person and focus on time spent doing those activities, together with conservation of energy.

Hygiene and Personal Care. The caregiver should consider the time and energy put into hygiene and personal care, providing assistance to overcome any problems. Some useful tips or aids are :

Grab bars around bathtub and/or toilet area.
A bath bench to sit on to facilitate getting in and out of the tub (a handheld shower also helps).
Washing hair in the shower.
Using a terry–-towel robe for drying.

Dieting and Eating Tips. PPS people require a good, balanced, general diet for a healthy body. It is important to avoid being overweight as this requires more energy from muscles, thus increasing fatigue. Increased weight places additional stress on joints which may lead to arthritis.

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PSYCHOLOGICAL IMPACT ON THE PERSON WITH PPS

One important fact to consider is that there is no simple relationship between the severity of a disability and the degree of psychological impairment. Many people have lots of physical disabilities and their psychological dispositions remain unaffected. One must also consider the wide range of individual reactions to disabilities and their attitudes as well as their adaptability towards the disability.

Common reactions to disabilities are :

Introversion, spending time alone. Many PPS people may feel they are inadequate compared to the "normal" population.
Increased anxiety, stress. This usually occurs because the individual with new symptoms may be afraid due to minimal medical knowledge and awareness.
Frustration/depression. This is evident in some PPS people who had acute polio and are now faced with new disabilities that cause a great deal of emotional turmoil.
More subdued. Often seen in PPS people whose independent functioning has become impaired.

PPS is psychologically traumatic because :

The symptoms arise unexpectedly
The cause is unknown
There is a lack of knowledge and understanding in the medical community
There are feelings of isolation and desperation as the PPS person searches for answers; feeling of devaluation may occur.

PPS psychological sequelae can be divided into four stages that may or may not overlap :

The first stage is one of mourning, which is a normal feeling. This may result in a PPS person rejecting the use of shoe inserts, braces, wheelchairs, respirator, etc.
The second stage consists of devaluing physical appearance. This means placing more importance on emotional, personal and psychological aspects and less on appearance.
The third stage deals with enlarging the scope of values, i.e., awareness that values in work, study and leisure are more meaningful than the value of the physical body in judging self-worth.
The fourth stage deals with learning to value their potentials within the limits of a disability rather than judging themselves in relation to the "full function" population.

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ROLE CHANGES AND IMPACT WITHIN THE FAMILY

The person with PPS may rely on the family for both physical and/or psychological support. The family must support the PPS person, be reassuring while taking over some of the tedious chores, yet help to maintain the autonomy of the PPS person. The family must keep in mind that this is only a physical disability. The PPS person remains cognitively intact, and is still a major part of the family and should be treated as such.

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