The following was first published in the June 1999 Rancho Los Amigos Post-Polio Support Group Newsletter and is reprinted here with kind permission of the author, Mary Clarke Atwood and the Rancho Los Amigos Post-Polio Support Group.
What Helps Post-Polio Patients Feel Better?
with Stanley K. Yarnell, M.D.
Reported by Mary Clarke Atwood
Rancho Los Amigos Post-Polio Support Group Newsletter - June 1999
Editorial assistance by L. Craig, S. K. Yarnell
In August 1998, the Colorado Educational Conference featured Stanley K. Yarnell, M.D. as it's keynote speaker. He is a well-known presenter at post-polio conferences worldwide. For the past twenty years Dr.Yarnell has been involved with disabled people both professionally and personally. He has been legally blind since 1978 due to recurrent optic neuritis.
In 1981 Dr. Yarnell established the first northern California post-polio clinic at Saint Mary's Medical Center in San Francisco. In an effort to determine the effectiveness of treatment services at this clinic, a survey was mailed in 1994 to patients who were seen in the St. Mary's Post-Polio clinic during the preceding five years. Eighty percent of the respondents said the advice they received from that post-polio treatment team was useful. Many months after visiting the clinic, fifty-nine percent of these 130 respondents reported they felt better.
This report is based upon Dr. Yarnell's keynote address and workshop session at the 1998 Colorado Educational Conference. The focus is on five treatment options which patients credited to their improvement. It concludes with the reasons patients gave for feeling the same or worse.
I. WHY 59% FELT BETTER
The average age of the respondents who felt better was 54.5 years; their last clinic visit was 1.7 years ago.
This group experienced improvement in these health indicators:
- better coping skills
- being more relaxed
- increased self-confidence
- fewer falls
- less pain
- less irritability
- better sleep
- better mobility
- less anxiety
- greater efficiency
- less depression
- better general health
Patients were asked to indicate which treatment options contributed to their improvement.
- emotional reassurance
- medication recommendations
- energy conservation techniques
- myofascial release
- seating changes
- TNS ( nerve stimulation)
- family education
- change or start ventilator
- adaptive equipment
- retirement/work cutback
- back/joint conservation
- non-fatiguing general conditioning exercise (20% rule)
What made them feel better?
79% reported energy conservation techniques 74% reported non-fatiguing general conditioning exercise program
following the 20% rule 59% reported retirement/work cutback 55% reported emotional reassurance 40% Wheelchair/scooter use
A: Energy Conservation
Seventy-nine percent of the respondents felt that energy conservation techniques taught by occupational therapists made them feel better. A key component to the management of fatigue is instruction in energy conservation techniques and pacing in day-to-day activities.
- Maintaining an activity diary to monitor and prioritize daily activities is often recommended. Some lifestyle changes may be essential.
- Sometimes setting limits may be necessary.
- Adaptive equipment is often helpful. Polio survivors have found motorized scooters and wheelchairs to be a great way to save energy.
- Careful analysis of gait may result in changes in orthotics so that walking will be more energy efficient as well as less painful.
- Environmental adaptations or modifications could be beneficial.
For expanded suggestions on energy conservation, see "Suggestions for Conserving Your Energy" by Grace Young, MA, OTR, in this same issue. This information, provided at her workshop sessions, followed Dr. Yarnell's keynote address. You can visit Grace Young's website at:
B: General-Conditioning Exercise - 20% Rule
Seventy-four percent of the respondents credited this non-fatigue conditioning program for helping them feel better. But polio survivors walk a fine line between overworking their delicate old reinervated motor units and therapeutic exercise. Many polio survivors may become deconditioned because of illness, surgery, trauma, or chronic pain; convalescing may take 3 to 4 times longer when compared to patients possessing a full compliment of anterior horn cells. So Dr. Yarnell has designed this non-fatiguing, general-conditioning program using the 20% rule for use when deconditioning is a factor in a polio survivor's fatigue. This program can help restore stamina for those individuals who have continued to be bothered by profound fatigue attributable to deconditioning.
The program begins by determining the polio survivor's maximum exercise capability (MEC) with the help of the clinic physical therapist. This individual's maximum is determined to be the amount of activity/exercise that results in achy or burning muscles, or when a person feels rubber legged. When a person's muscles feel this way, they're beyond what is potentially therapeutic and have wandered into the area of potential injury.
The exercise chosen can be in a pool or on dry land, using an arm ergometer (upper-body exerciser) or exercise bicycle. The pace of exercise depends on the individual's abilities and preferences. The individual begins at twenty-percent of MEC about 3 times a week. After 4 weeks the distance or time is increased ten-percent.
Most polio survivors are able to continue increasing their exercise program to the maximum exercise capability. Working gradually toward a maximum may take
a full 9 months if the program is strictly followed. Exercise at a sub-maximal level allows an individual to regain a healthier sense of stamina without damaging delicate old motor units.
Additionally, it is imperative to incorporate the concept of pacing and spacing into the non-fatiguing, general-deconditioning exercise program. The 20-percent rule is also applied to instructions in home flexibility and stretching programs given to polio survivors, so that patients do not exercise too vigorously. This exercise program can be modified somewhat, with the supervision of a physical therapist, depending on the progress made by the polio survivor.
This program may not eliminate fatigue for all polio survivors, but it is effective for those who have a significant element of deconditioning that contributes to their sense of fatigue. For polio survivors and their treating physicians, it has been useful as an exercise guideline following illness, surgery, myocardial infarction, or trauma.
- Example 1: Conditioning Exercise - Swimming
If the individual prefers swimming, then the maximum of laps that the patient can swim is used as the maximum exercise capability. If the survivor has considerable residual weakness and is only able to swim one lap in one half-hour, then the amount of time actively swimming can be used as the maximum exercise capability, rather than the number of laps. When the maximum exercise capability has been established the polio survivor is instructed to begin his aerobic swimming program at twenty percent of the determined maximum exercise capability. He can swim 3 to 4 times per week at that level for 1 month, and then is instructed to increase by ten percent. For example, if the individual is able to actively swim in a pool for one half-hour, then one half-hour would be his maximum exercise capability. He would begin swimming just six minutes per session, 3 to 4 times per week, for a month, then would increase the amount of time actively swimming to nine minutes, 3 to 4 times per week for another month. After that he would increase by ten percent once again, so that he would be actively swimming twelve minutes per session, 3 to 4 times per week, for another month, and so on. After 3 to 4 months, patients have reported that they feel an increase in general stamina or endurance.
Pacing, or interspersing rest periods between active exercise, is essential. In the example above, the patient would be urged to actively swim for three minutes, rest for two minutes, then swim for three more minutes, then rest for two minutes. Patients are encouraged to use flotation devices, flippers, or other devices to maker their swimming as easy as possible, so that they can truly rest between bouts of active swimming.
- Example 2: Conditioning Exercise - Bicycle or Arm Ergometer
Alternatively, if an arm ergometer or a bicycle is used, the same principle can be outlined, calculating distance peddled or time spent actively peddling the ergometer or exercise bicycle. The individual begins his aerobic or non-fatiguing general-conditioning exercise program at twenty percent of maximum exercise capability, 3 to 4 times per week, for one month, and then increased the distance by ten percent. He continues with that level of activity for another month before increasing by another ten percent, so he is exercising at forty percent of maximum exercise capability. For example, if an individual is capable of peddling an exercise bicycle for one mile, or is actively able to peddle the bicycle for up to twenty minutes, then that is his maximum exercise capability. He is instructed to begin his/her exercise program at 1/5 of a mile (or if time is used, then four minutes is the beginning exercise time). This is repeated three to four times per week for an entire month before increasing the distance to 1/3 of a mile or to six minutes. Patients are encouraged to follow this same schedule for an additional month before increasing by another ten percent, and so on.
Polio survivors are reminded to always pace themselves or put rest intervals into their exercise programs. Individuals are cautioned to stop if they become fatigued during the exercise program or if they experience aching or pain in their muscles.
C: Retirement/Work Cutback
Fifty-nine percent of the respondents reported they felt better due to retirement/work cutback. Therefore Dr. Yarnell will continue to recommend this change to patients.
D: Emotional Reassurance
Fifty-five percent reported that emotional reassurances made them feel better. Dealing with additional disability may result in chronic anxiety and a sense of sadness for polio survivors because of grieving for losses. Post-polio support groups or self-help groups are most helpful. Sometimes individual counseling may be necessary to help a patient reduce his/her anxiety, allowing for better sleep habits, greater sense of self confidence, and a feeling of more energy.
E: Wheelchair/Scooter Use
Forty percent of the group who felt better credited it to use of a wheelchair or scooter.
II. WHY 23% FELT THE SAME
The average age of respondents who felt the same after their clinic visit was 56 years; their last clinic visit was 1.6 years ago. These people were asked to indicate whether they felt better, the same, or worse in the following health indicators:
- level of relaxation
- shortness of breath
- number of medicines
- family relations
- work relations
- coping skills
- energy level
- frequency of falls
- average weight
- general health
These respondents all reported no change in these health indicators. However, 43% believed they would have felt worse if they had not visited the clinic.
III. WHY 18% FELT WORSE
The average age of the polio survivors who felt worse after their clinic visits was 64 years; their last clinic visit was 2.0 years ago. When responding to the health indicators listed on page 1, on average they felt worse in nine categories and the same in the remaining areas. This group characterized themselves as feeling worse because of:
- decreased energy
- increased weakness
- poor mobility
- increased fatigue
- more pain
- less stamina
- worse sleep
- poorer concentration
- greater anxiety
Why did they think they felt worse:
- 76% due to PPS symptoms that progressed
- 48% due to age
- 29% due to increased stress
- 44% due to other illnesses
Dr. Yarnell believes that all polio survivors will NOT necessarily get worse. One key to keeping free of pain is to maintain flexibility of the trunk and spine. Dr. Yarnell suggests that each person who had polio spend 5 minutes daily on flexibility exercises.
Because of the positive responses to treatment services, Dr. Yarnell's clinic will continue to:
- emphasize energy conservation
- teach exercise parameters
- advocate early retirement or work simplification
- provide emotional reassurance
- encourage use of power wheelchairs/scooters and adaptive equipment
- emphasize joint conservation
- consider the use of medications for pain, weakness, and fatigue
Many polio survivors are having similar symptoms for entirely different reasons. The challenge for the post-polio treatment team is to design a successful, customized treatment program following careful diagnosis and analysis of primary complaints.
FOR MORE INFORMATION
Saint Mary's Medical Center
450 Stanyan Street
San Francisco, CA 94117
Reprinted from Rancho Los Amigos Post-Polio Support Group Newsletter June 1999.
© Rancho Los Amigos Post-Polio Support Group Newsletter and Mary Clarke Atwood
The Rancho Los Amigos Post-Polio Support Group meets the 4th Saturday, from 2:00-4:00 in Downey, CA.
Contact: RanchoPPSG@hotmail.com for more information.
PAPERS BY YARNELL:
- The Benefit of Exercise in PPS - Antoniuk, Feldman 1995
- NRH Limb Classification for Exercise, Research & Clinical Trials for PPS Patients - Halstead 1995
- PPS & Exercise: What is Right for You - Matheson 1995
- Special Populations and Exercise - Durak 1996
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