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The Survivor Newsletter: Autumn 2001

A few words from the Editor ...

Dear Members

Well, here we are in the middle of August and the rain is pouring down! However, that is not stopping the Post Polio Support Group Board from working away on our behalf to further the aims of the Group.

A series of Regional Meetings will be held in each Health Board Area over the next few months. You and your family are warmly invited to attend the meeting nearest to you (diary on page 4 and 5), and if you know of other Polio Survivors who are not yet members of the Post Polio Support Group, and who, for one reason or another are shy at coming forward, please encourage them to come as well. Information available tells us that there are about 7,500 Polio Survivors in Ireland, and we have nearly 500 members on our membership list, which means that there are a lot more people out there who don’t know about us, and we would like to encourage every Polio survivor in Ireland to become a member of the Post Polio Support Group, whether or not they are having difficulties with their health.

We have an interesting article on page 6 - an overview of Polio 2001 - as well as information from our members and other news of interest. If you always wanted those colour co-ordinated crutches then turn to page 15!

So, read and enjoy, and if you would like to share something with our members, just write or email me (address on page 1), I’d love to hear from you.

Paula Lahiff (Editor)

From the Chairperson ...

Although it is now summer and things are usually quiet at this time, this year it is certainly different. Our new logo, which you can see on this newsletter, is being gradually introduced, and we do hope that you all like it. We consider it presents a clear and modern image. Following on this, our stationery is presently being finalised and our new general information leaflet is also near completion. We will then be updating our booklets and other necessary items. We are also presently having our Website redesigned and updated, it will be located shortly at the same address i.e. www.ppsg.ie. Any members attending our Area meetings will also see the logo displayed on our new Display Stand with other information. This stand was purchased with the help of donations in memory of the late Phyllis Lee, who was a member of our Group. We wish to express our gratitude to all her friends. We wish also to express our thanks to Phil Mullally, daughter of our member Joan Carr, who raised £500 by competing in the Dublin marathon, and to Colette Killeen who had to pull out at the last minute.

A number of other new projects are presently in various stages of planning. We are commencing a fund-raising project, which has specific aims: to assist Dr Hardiman's funding of her research project, to fund our survey project (mentioned below) and to help provide services not already available. We envisage the initial stage of this project to be carried out on a personal approach basis. We are planning a number of fund-raising functions throughout the country over the next 18 months and more details will be available later. If any members are interested in assisting with this project, they should contact Aisling at our Head Office. We are also planning a nation-wide survey of all Polio survivors who wish to take part, which will hopefully commence early next year. This will provide vital information that will enable us to plan for the needs of all Polio Survivors in Ireland over the coming years, and to compile a detailed report to government on these needs. We have produced our Annual Report, which has been circulated to all Health Boards and other relevant parties, along with a copy of our audited Annual Accounts.

Keep well everyone!

Jim.

Polio 2001 - An overview - full article by
Mary Ann Keenan, M.D. Alberto Esquenazi, M.D.
The Einstein-Moss Rehab Post-Polio Program,
Institute for Mobility Evaluation and Treatment,
Albert Einstein Medical Center,
5501 Old York Road, Philadelphia, PA 19141.

Reprinted with kind permission of
Leicester Post Polio Network (www.poliouk.org)

Acute Poliomyelitis.

Because of effective immunization programs, acute poliomyelitis has become a rare occurrence in most of the world. The last major epidemics in the developed world occurred during the early 1950’s.

Poliomyelitis is the result of a viral infection, which attacks the anterior horn cells of the spinal cord. The anterior horn cells control the skeletal muscle cells of the trunk and limbs. All of the anterior horn cells are affected with the acute infection. This accounts for the diffuse severe paralysis seen with the initial infection. A variable number of anterior horn cells survive the initial infection.

Acute polio is characterised by the sudden onset of paralysis accompanied by fever, acute muscle pain and often a stiff neck. Paralysis of the respiratory muscles is life threatening in the acute stage. When the shoulder muscles are involved, respiratory compromise should be suspected because of the close proximity of the anterior horn cells controlling each in the spinal cord. Mechanical support of ventilation may be required.

The treatment in the acute stage of the disease consists of providing the needed respiratory support, decreasing muscle pain, and performing regular range of motion exercises to prevent the formation of joint contractures.

Subacute Poliomyelitis

The subacute stage of polio is characterized by the recovery of a variable amount of muscle function. Mechanisms of regaining strength include 1) anterior horn cell survival, 2) axon sprouting, 3) muscle hypertrophy. Although all of the anterior horn cells in the spinal cord were affected by the initial infection, some will survive. The average number of anterior horn cells to survive is 47% (Range 12 to 94%) as seen from post mortem studies. The pattern of anterior horn cell survival in the spinal cord is random and does not follow anatomically continuous areas. The distribution of the paralysis is variable depending on which anterior horn cells were destroyed.

Additional muscle function is gained during the recovery phase by axon sprouting. One anterior horn cell innervates a group of muscle cells. When muscle cells are ‘orphaned’ by the death of their anterior horn cell, a nearby nerve cell can sprout additional connections (axons) and ‘adopt’ some of the muscle cells A motor unit is defined as a nerve cell and all of the muscle cells it controls. The axon sprouting which occurs after polio can result in very large motor units.

The other mechanism by which people regain strength after polio is by muscle hypertrophy. The surviving muscle cells enlarge in an effort to provide additional needed power. During the subacute stage of the disease, which may last from 16 to 24 months following onset, the emphasis is on preventing deformities and preserving function. Splinting and braces are often helpful to maintain joint position and supplement function.

Residual poliomyelitis

It was during the residual stage that the orthopaedic surgeon traditionally became active utilising surgical procedures to restore lost function and provide structural stability. If the person was still growing, it was important to prevent the formation of skeletal deformities resulting from the muscle imbalance.

The person with compromised function of the diaphragm was taught glossopharyngeal breathing in which air is swallowed into the lungs. This provides sufficient air exchange for light activities performed while sitting. The person often still required mechanical support of ventilation while sleeping.

Post Polio Syndrome

With the last major polio epidemics in the United States occurring in the early 1950’s, it has become common to see individuals who had polio as a child now returning complaining of increasing weakness. Many are concerned about loss of function. Polio has always been considered to be a static disease in that the paralysis is not progressive. The increasing weakness has been attributed to the overuse of muscles already weakened by the polio. Often muscles, which were thought unaffected, exhibit weakness at a later date.

Studies have shown that a muscle must lose 30 to 40% of its strength for weakness to be detected using manual muscle testing. Gait laboratory studies have also demonstrated that activities of daily living require more muscle strength and stamina than were previously appreciated. Polio Survivors have traditionally been encouraged to work harder to regain strength. The concepts of ‘no pain, no gain’ has proven detrimental to the polio survivor because it has encouraged chronic overuse of their muscles and resulted in further deterioration of function.

Most Polio Survivors begin to notice the deterioration approximately 30 years after the onset of the disease. The combination of symptoms varies slightly between people. The diagnosis of post-polio syndrome is made on the following clinical criteria:-

A history of poliomyelitis.

A pattern of muscle weakness which is random and does not follow any nerve root or peripheral nerve distribution. A constellation of symptoms indicating decreasing strength and function. (See Table 1).

There are no tests that are diagnostic of post polio syndrome. Electromyography can demonstrate the presence of large motor units resulting from the previous axon sprouting. These findings are supportive but not diagnostic of polio.

Table 1

Increasing Muscle Weakness . Sleep Apnea . Joint pain or Instability . Intolerance of Cold . Severe Fatigue . Depression . Muscle Pain . Muscle Fasciculations . Muscle Cramp.

Treatment of Post-Polio Syndrome

The treatment of post-polio syndrome is directed at preserving current muscle strength and preventing further weakness from occurring. Generally, it is not possible to strengthen a muscle that has been weakened by polio. Some gain in strength can be seen when chronic overuse is corrected.

The basic principles of treatment of post-polio syndrome are:

Spine

A common complaint is back pain that usually results from postural strain.

Excessive lumbar (low back) extension is used to substitute for weak or paralyzed hip extensors. Neck pain is frequently seen also. This, too, is from slowly increasing weakness. At times the neck muscles become tight from the strain and can actually press on the brachial plexus nerves of the arms causing numbness.

This is called ‘Thoracic Outlet Syndrome’ It is treated with gentle stretching exercises of the neck. Both complaints can be treated by the use of external supports. It is important to relieve the excess workload from the muscles to prevent further deterioration. For neck pain tilting the seat of a chair backward 10 degrees is often sufficient to relive the fatigue of the posterior cervical muscles from supporting the head. Patient education is essential since most individuals are reluctant to use braces that they long ago discarded.

Paralysis of the cervical (neck) spine musculature can result in the inability to maintain the head erect. This interferes with performing all other functions including walking. Fusion of the cervical spine can correct the problem.

Scoliosis (spinal curvature) is common secondary to paralysis and the resulting muscle imbalance. It can be further enhanced if a leg length discrepancy exists. External supports can be used to support the spine but these often interfere with breathing. Spinal fusion may be needed to control the spine adequately. If fusion is needed, prolonged immobilisation post-operatively is to be avoided. Prior to any surgery requiring general anesthesia or significant sedation, the vital capacity of the lungs should be assessed to determine the individual’s need for respiratory support.

Upper Extremity

Shoulder. - The Shoulder is important for placing the hand in the desired position for use. The shoulder is totally dependant on muscle strength for active mobility. Weak muscles about the shoulder can be made more functional with the use of mobile arm supports for the wheelchair user. This allows a greater arc of motion with less muscle strength. In the ambulatory person who requires upper extremity aids, shoulder stability is more important and a shoulder fusion may be helpful if there is sufficient strength of the chest wall muscles. Motion between the shoulder blade and the chest wall is maintained allowing use of the extremity for tabletop activities. Shoulder fusion does restrict the ability of the person to position the hand for bathroom hygiene so it is undesirable to fuse both shoulders.

Preservation of shoulder strength should be a priority of treatment since bracing and surgery of the paretic shoulder offer limited improvement. Shoulder weakness is found in 95% of individuals with post polio syndrome and correlates closely with the amount of lower extremity weakness present. Rotator cuff tears are also common. Individuals with weak legs will use their arms to push up from a chair and pull themselves upstairs. They also lean heavily on upper extremity aids while walking. It is therefore important to remove as many unnecessary strains from the shoulders as possible. This can be done using elevated seats, motorized lift chairs, elevators or motorised stair chair glides [stair lifts] and optimal lower extremity bracing. In minimally or non ambulatory individuals, an electric wheelchair or motorized scooter should be prescribed to prevent excessive strain on the shoulder muscles caused by propelling a manual wheelchair.

Elbow - The elbow requires sufficient flexor strength to lift an object against gravity for function. A mobile arm support can maximise the effectiveness of the muscle strength for the person. Tendon transfers, such as deltoid to the biceps, may also be useful in restoring muscle function.

Hand - Opponens paralysis is common in the hand and results in a 50% loss of hand function. A splint used during the acute and recovery phase is useful to prevent an adduction contracture. Tendon transfers can restore Opponens function. The most common muscle transferred is the superficial flexor of the ring finger.

Paralysis of the small intrinsic muscles of the hand interferes with function. A lumbrical bar orthosis will prevent hyperextension of the metarcarpophalangeal joints and allow the long extensors to extend the fingers and open the hand. Surgical capsulodesis (tightening of the joint capsule) to limit metacarpophalangeal joint extension will accomplish the same result.

Paralysis of the finger flexors and extensors can be overcome with the use of a flexor hinge brace if the wrist extensor function is present. Tendon transfers can provide the same result allowing the tenodesis effect to provide grasp and pinch functions.

Lower extremities

Full range of motion of the hip and knee joints is needed for function. Contractures should be corrected when possible to permit more effective bracing. Iliotibial band contractures of the outer thigh are common. This causes the hip to assume a position of flexion, external rotation and abduction. The knee assumes a valgus (knock-knee) alignment and the tibia is externally rotated on the femur. Release or lengthening of the iliotibial band will correct the deformity.

An individual with flail lower extremities can stand using crutches and a knee-ankle-foot orthosis (KAFO) with the knees locked in extension and the ankles in slight dorsiflexion by hyperextending the hips and utilising the strong anterior hip capsule for support. Flexion contractures of the hips or knees prevents this alignment. If trunk support and upper extremity strength is adequate, the person could ambulate with a swing-through gait for short distances. This gait has high energy demands. With time the posterior knee joint capsule becomes stretched and the knee develops a recurvatum (back knee) deformity which is painful and can lead to arthritic degeneration of the knee. A knee ankle foot orthosis (KAFO) will protect the knee and provide improved stability for walking.

If there is Grade 3 (FAIR) strength in the hip flexor muscles and passive full knee extension, then the knee joints can be left unlocked for walking. In this case a posteriorly offset knee joint is used to stablize the knee and ankle dorsiflexion is limited to minus 3 degrees of neutral dorsiflexion to provide a hyperextension moment to the knee for stability.

Quadriceps (front thigh muscles) strength is not essential for ambulation. A strong gluteus maximus (buttocks) and good calf strength can substitute by keeping the knee locked in extension. If the calf strength is inadequate to control the forward motion of the tibia in mid to late stance, an ankle foot orthosis (AFO - brace) is needed. This could result in a back knee deformity from the hyperextension push on the knee joint. An equinus (toe down) position of the foot inhibits forward momentum and limits step length by preventing body weight from rolling over the forefoot prior to contact of the opposite leg with the ground. When good hamstring (back of thigh muscles) function is present, two of these muscles can be transferred to the quadriceps tendon to provide dynamic knee stability.

Muscle imbalances in the foot can lead to deformity. When muscle imbalances exist, tendon releases or transfers should be considered prior to the development of fixed deformities. Equinus (toe down) contractures of the ankle is very common. This results in genu recurvatum (back knee). The equinus should be corrected by Achilles tendon (heel cord) lengthening.

Accommodating the toe down posture by using an elevated heel on the shoe is not a good solution since this places excessive stress on the calf muscles to control the leg. An Achilles tendon lengthening is frequently needed to correct an equinus (toe down) contracture of the ankle to permit adequate bracing. When a cavus foot (very high arch) deformity is present, this causes forefoot equinus, which also limits bracing. If no fixed bony abnormalities are present, then release of the plantar fascia ligament will be sufficient to correct the deformity. If the cavus deformity is caused by bony deformity, then a closing wedge osteotomy (cutting the bone) is needed to correct the deformity. A triple arthrodesis (fusion) of the heel can be used to correct deformities and provide a stable base of support.

The longstanding muscle imbalances, patterns of muscle substitution, and resulting joint and ligament strains often lead to degenerative arthritis. Total joint replacement can be performed but several special considerations are needed. Osteoporosis is common in the polio survivor because of the prolonged lack of muscle action on the bone. Joint contractures must be corrected at the time of surgery to prevent excessive forces on the artificial joint, which might lead to loosening. Weak muscles must be supported with the appropriate braces after surgery. The rehabilitation program will be longer than usual to regain joint motion and muscle function. Continuous passive motion devices and frequent joint range of motion must be used to gain joint mobility after surgery. Since the hip joint is difficult to brace, there must be at least grade 3 after surgery. Surgery can be expected to weaken the surrounding muscles. This must be taken into account before proceeding with total hip arthroplasty to prevent chronic dislocation.

The Post Polio Support Group AGM could be coming to you!

We are currently planning the Annual General Meeting for 2002. You can help us to decide where to hold next year’s meeting. There are four locations on the final list (chosen for accessibility by road, rail and bus). Please help us to decide in which one the AGM should be held in 2002. You can ring Joan Bradley at 01 454 9237 and leave a message stating your name and the town of your choice. THERE WILL BE A SMALL PRIZE (for the 10th, 50th and 100th caller).

Please ring and tell us in which of the following towns you would like the AGM to be held:

Bits and Pieces ………

Volunteer Resource Pack ...

2001 is UN International Year of Volunteers. The National Committee on Volunteering has just launched a resource pack called “I Volunteer”. This pack has information on funding and resource materials for voluntary organisations in Ireland. It is available FREE of charge. It can be obtained by telephoning 01 8146104 or emailing marguerite.bourke@comhairle.ie

New Radio Programme on Disability Awareness …

NEAR FM (fm 101.6) have emailed us to tell us of their new Disability Awareness Programme called EQUALITY TIME which will go out on Tuesdays at 7.02 p.m. The programme is hosted by Brendan Crean and Geraldine Wynne and aims to address issues relating to disability and the disabled.

So, if you can tune in to NEAR FM, why not do so and see what they have to say!

The program makers would like to hear from you if you have any issues you would like to have raised on EQUALITY TIME.

Contact Brendan or Geraldine at 01 8671016.

Designer Crutches with black anodized finish …

Why should crutches always come in metallic grey that don’t match any outfit? At last - but unfortunately at some cost - one of our members has tracked down crutches with a black anodized finish.

These can be obtained from:
Thomas Fetterman, Inc
1680 Hillside Road
Southampton PA 18966
USA.

Website: www.fetterman-crutches.com

If this is what you have always been looking for—you have just found it!.

Letters to the editor …

Extract from email from John McFarlane. Thanks for the following information, John - Editor

Insurance

The Disabled Drivers Association of Ireland, Ballindine, Co. Mayo (Tel: 094-64054 or 64266 Fax: 094-64336) operate a closed group motor insurance scheme. In effect you have to be a member of the DDA to get onto it.

Once a member of the DDA, the motor insurance is brokered through Richardson Brokers, Rathdown, Glenageary Road, Glenageary, Co. Dublin (Tel: 01-283-4155 Fax: 01-283-4513) Contact Mr Fry.

The insurance is placed through Equity Red Star at Lloyds with considerable discount over other rates available here in Ireland.

Medical Cards for EU Citizens coming into Ireland

To quote from NSSB booklet Jan '98 page 34 "People who are receiving a social security pension from any other EU country but not getting an Irish Social welfare payment, are entitled to a Medical Card regardless of their means provided they are not employed or self employed here”. This entitlement arises because of EU regulations.

When assessing your entitlement under EU regulations, the Health Board may enquire into your sources of income to see whether or not you come under the Regulations - this is not the same as a means test.

People who receive both an Irish Social Welfare pension or payment and a pension from another EU country must pass the means test. Any person, regardless of nationality, who is accepted by the Health Boards as being ordinarily resident in Ireland is entitled to either full eligibility (Category 1, i.e. medical card holders) or limited eligibility (Category 2) for Health Services. Health Boards normally regard persons as being "ordinarily resident" in Ireland if he/she satisfies the Health Board that it is his/her intention to remain in Ireland for a minimum of 1 year.

Under EU regulations, persons taking up permanent residence in Ireland who are in receipt of a social security pension from another EU member state, who are not in receipt of an Irish Department of Social, Community and Family Affairs pension (either as a recipient or a dependent, and are not employed or self employed are entitled to a medical card irrespective of means. Otherwise, they are entitled to health services on the same basis as persons normally resident here, i.e.. on means"

The medical card is not issued for the family, JUST the person in receipt of the EU social security payment and when they meet the other criteria. It is a little known or understood rule, and from experience of sorting a few out for people, the admin in the Health Boards don't know about it. The initial reaction is rejection. The thing is with more and more people coming back from the UK if they are in receipt of a social security pension from there such as Invalidity or Incapacity Benefit and they retire here early, say because of their disability, they are entitled to a Medical Card.

Wonder if there any members out there who are entitled but not receiving their due?

John R McFarlane

WANTED … WANTED … WANTED

Manual wheelchair, large size, for someone in need in Africa. If you have one gathering dust in your attic, this is the chance to put it to good use.

Contact Joan Bradley at 01 454 9237.

PAST AND PRESENT

By Joan Bradley

We live in a great age for communication? Those born at the beginning of the last century could not have even imagined the speed of airmail or the instantaneous arrival of E-mail on another continent; we call it I.T 'Information Technology'.

The story goes that many years ago at a time of war, when our brave ancestors fought in the trenches, that messages were sent from man to man alone the line to their destination.

One day the following message was sent from the war front: -

'Sent up reinforcements we're going to advance.'

With the noises of war, and the length of the line of men, when it arrived at its destination it said: -

'Send up three and four pence we're going to a dance.' (those were the days!)

A far cry from methods of communication to day, but still one of the problems of our age is the lack of information.

'Nobody told me'. 'I didn't know you wanted that, or that you were sick, or that you longed to go to the football match'. Why?

The computer with its chip has revolutionised the handling of information. It takes it in and processes it in seconds. Town planners use it, aeroplanes fly by it, ships are steered by it, governments rule by it, motor cars are manufactured by it, strategies are formed by it, but of course many of us fear it. It is worth reflection that there was a time when some of our forefathers were afraid to eat anything out of a tin.

'It couldn’t be safe!' they reckoned, and with the information they had to hand they were right to make that comment.

I. T. has come to stay and it will play a big part in the future of our world. For the most part it will improve the quality of our lives, but the right information has to be put in so that the right result can come out. The responsibility for that is on our shoulders.

JOAN BRADLEY

The Disabled Drivers Association is pleased to announce the establishment of Ireland’s first Driving Assessment Centre. Equipped with the very latest technology, the Ability Static Assessment Unit includes the following tests:

This Unit provides accurate testing using various technical adaptations for persons with disabilities. The Assessment Unit will be of particular benefit to persons recovering from a serious accident or persons who have suffered a stroke, CVA, or brain haemorrhage resulting in serious restriction of movement of their limbs

The test sequence is designed to identify the disabled person’s strengths and weaknesses and by the use of various technical aids/adaptations identify suitable solutions to enable them to drive in a competent and safe manner.

For further details contact: 094 64054/64266
Mr. Derek Farrell, Centre Manager
Mrs. Denise Duggan, Assessor
Mr. Gerard Dunne, Assessor

This will also be o great assistance to Polio Survivors who now want to have their car adapted, and need to assess their specific requirements.—Editor

DISCLAIMER

Whilst every care is taken to ensure accuracy, the Editor and the Board can accept no liability. The views expressed in this newsletter are not necessarily their views.

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