You are here: Home > Publications > The Survivor Newsletter > Autumn 2005

The Survivor Newsletter: Autumn 2005

NEWS UPDATE FROM THE CHAIRMAN

New Information and Awareness Project coming onstream

OUR new Chief Executive and Services & Information Co-ordinator have been in place since June, and both are working with Ursula to get to know the Members. In any new position there is a learning curve, and we, the volunteers look forward to getting impetus from our new team bringing forward new plans and ideas to progress the work of our Group.

With our increased funding now on stream, there is an amount of work in hand, presently, as our total funding for 2005 has to be prudently managed in a much shorter timeframe. The reasons for this are simply that the negotiations with the HSE officials, and the employment of the new personnel were very time consuming during the first part of this year.

We are presently drawing up a new Information & Awareness project, which will encompass a nationwide distribution of our Leaflet & Poster to increase awareness among the survivor population. We will distribute these to every Health Centre General Hospital and 800 GPs surgeries throughout Ireland. For Healthcare Professionals, we are beginning the process of compiling a multidisciplinary publication, which sometime next year, we hope to circulate throughout the Healthcare professions that care for Polio Survivors. Our aim is to increase awareness of the Late Effects of Polio among those who provide care for us. We continue to look at other projects which will assist in creating awareness of the Group's work, and the problems which Polio Survivors are facing. We are also investigating the possibility of providing some new services for Polio Survivors, and would hope to consult with you all on this topic early next year.

Our Social Support groups have been meeting throughout the country, and our thanks are due to the Convenors for their work organising and energising these meetings. Our Area meeting in the West in April went extremely well and was thoroughly enjoyed by all who attended. Barbara and Paula take a bow! The Dublin mini marathon was well supported and our thanks are due to Ann for all her work, and to all those who sponsored runners or took part. The Cork mini marathon took place in September and the Limerick mini marathon takes place in October.

Our retired Board Member, Frank Jones passed away in June, our sincere condolences to his wife Phil. We were extremely lucky and fortunate to have someone of his experience and background working along with us during the time our Group and its work was expanding, particularly over recent years. We fully recognise and appreciate his dedicated work in furthering the progress of our Group. May he rest in Peace. (Obituary on page 14)

KEEP WELL - JIM

---

New Website from Comhairle

COMHAIRLE’S new website is to be found at www.assistireland.ie. This site provides information on over 5,000 and older people in their daily living.

The website has two main areas: a directory of 'Products and Suppliers' and a 'General Information' section. The Products and Suppliers directory is broken down into 20 categories ranging from Personal Care, Walking and Standing Devices to Eating and Drinking and Wheeled Mobility. Each product contains a brief description, any relevant dimensions and specifications, and most include an image.

The General Information section explains relevant legislation and funding options. It also explores the application of assistive technologies in different daily living situations, for example in the home and employment.

The website was developed over the last two years in consultation with a wide range of disability organisations and is very easy to use. It also won the Best Accessible site at the recent eGovernment Awards 2005. For further information about the website, email support@assistireland.ie. A telephone support line is also available on Lo-Call 1890 277 478.

Fund Raising News

THE Dublin Flora Women's Mini Marathon, in association with “The Evening Herald", which took place on 6 June last with some 40,000 participants, was once again a great success. Post Polio Support Group members, family members and friends, numbering about 60-70 in total took part in the event. Again beautiful, warm and sunny weather was enjoyed by participants and spectators alike. Jim Costello, Hugh Hamilton, Eamonn Farrell and Tansy the canine mascot, were delighted to meet many of our participants who could come along to Neary's afterwards for refreshments. The photos give a flavour of the day's atmosphere! So far sponsorship monies received amount to in the region of 12,000 euro.

The Fundraising Committee wishes to thank most sincerely all those who took part in the marathon on behalf of the Post Polio Support Group, and all who have already forwarded generous sponsorship monies and donations, (some anonymous), to the Office. It is not too late to send outstanding sponsorship monies or donations, (no matter how small), to the Post Polio Support Group office for this, our main fundraising activity in 2005. Details if required can be obtained from the office or you can contact Anne Burns tel. (01) 4534150 email: boyneabu@eircom.net

The Post Polio Support Group again participated in the "Evening Echo" Cork Women's Mini Marathon on 18 September, About 50 people took part. Many thanks to Evelyn Wainwright and Noel Magner for their trojan work in the organisation of this event. Please send in sponsorship monies to Evelyn or to Head Office.

To complete the mini marathon season, the Post Polio Support Group will also be involved in the "Irish Examiner" Limerick Women's Mini Marathon, on 9 October, 2005, at 2.00pm. Information and sponsorship cards can be had from: Tom Clifford, Cloonfadda, Killaloe, Co. Clare, tel. (087) 2259083, or by email: tomclifford1@eircom.net

Post Polio Support Group Sponsorship cards are also available for the Adidas Dublin City Marathon on 31 October 2005 at 9.00am. Details can be had from Anne Burns.

The Fundraising Committee would also like to thank all who already sent into the Office the proceeds raised from the Post Polio Support Group Collection Boxes. You can still send in payment, (no matter how small from the loose change collected in the boxes), by cheque, bank draft, postal order etc. to the Post Polio Support Group Office.

Cash collections have been organised again this year in Cork, (which have been very successful in the past), at the Douglas Court Shopping Centre on 25 and 26 October, 2005 and at Glanmire Shopping Centre on 28 and 29 October 2005. Any help you, any family members or friends can give with these collections would be much appreciated, details from Evelyn Wainwright.

A cash collection/selling Christmas cards is planned at Superquinn's, Sutton Cross, Dublin on Thursday and Friday 1 and 2 December, 2005. Volunteers are urgently required to help with this fundraising event. If you, any family members or friends can assist us at Sutton, please contact Anne Burns.

The Christmas Card Order form is enclosed with this newsletter. You will see that a choice of six designs is available for sale this year, including a new design by Hugh Weir to whom we are grateful. We would also like to thank those who provided the remaining artwork designs on sale.

Details of shopping centre outlets in Cork where Christmas cards will be sold are not available as we go to press. If you, family members or friends are in a position to help with selling Christmas cards you can contact Evelyn Wainwright for details.

Your generosity in the past and your continued support is much appreciated. All funds so raised go directly to the benefit of our members.

ANNE BURNS - Fundraising

---

Circle Of Friends

WE have applied for funding from Vodafone to set up a “Circle of Friends” Project for our members who are unable to attend Social Support Meetings due to difficulties with transport or for any other reason.

We aim to set up four pilot groups initially (one in each province). There will be 10 members in each circle with a convenor who will have the contact numbers of each member and who will undertake to phone each member on a monthly basis. The convenor will then - with the prior consent of the member - put them in touch with another member in the circle and they can also be in contact with each other by phone. It is hoped that eventually each member in the circle will have the contact numbers of all other members in the circle.

This is a great way to talk to others who understand your difficulties and your triumphs, to exchange tips, information and even just for a chat.

If you are interested in taking part in a pilot group for our Circle of Friends Project, please contact the office. (details on page 2)

---

Post Polio Support Group SUPPORTS RESEARCH AT BEAUMONT HOSPITAL

The Post Polio Support Group is delighted to announce that it is supporting two research projects which are currently taking place at Beaumont Hospital as set out below, and would encourage our members to volunteer to take part, as all research into Post Polio Syndrome (Late Effects of Polio) will further the knowledge of, and lead to more understanding and better management of this condition.

POST POLIO SYNDROME AND DIABETES

A NEW research project has been initiated at Beaumont Hospital under the leadership of Dr Orla Hardiman, Consultant Neurologist. This study aims to determine whether people with Post-Poliomyelitis Syndrome (PPS) are more likely than the general population to develop diabetes.

A recent study performed by Dr.Hardiman and coworkers at Beaumont has suggested that fasting glucose levels were raised in a group of people with Post Polio Syndrome. High fasting levels of glucose can be associated with diabetes, which is a disorder of glucose regulation. Untreated diabetes can cause blood vessel and nerve damage, and can increase blood cholesterol and fatty acids.

This new study now will attempt to build on that initial research. Volunteers will be asked to attend Beaumont Hospital for one morning after an overnight fast. They will be asked to drink a solution containing glucose, and a series of blood samples will be taken to measure glucose and insulin as well as cholesterol. The results of this test will help to determine the risk of developing diabetes, and whether cholesterol levels are higher than they should be.

The aim of this study is to find out whether people with PPS are at higher risk of developing diabetes. If this is indeed the case, the researchers will proceed to a second phase of the study to find out the reasons for this association.

This study has ethics committee approval from Beaumont Hospital. Any members of the Post Polio Support Group who might be interested in participating (and do not have an existing diagnosis of diabetes) should register their names and contact details by mail to the following address: Dr Julie Phukan/Post Polio Research, c/o St. Brigid’s Ward, Beaumont Hospital, Dublin 9., and the team from Beaumont will be in touch.

POST POLIO SYNDROME AND FATIGUE

SINCE 1999 the QMA (Quantitative Muscle Assessment) equipment has been used in the physiotherapy department at Beaumont hospital to test and research muscle strength and fatigue in Polio Survivors. The title of the current study is 'An Investigation of Subjective and Motor Fatigue in Prior Polio Patients and the relationship with the Energy Cost of Walking'.

The aim is to increase understanding about different types of fatigue that Polio Survivors experience. We hope that this will lead to better management of this distressing symptom.

Questionnaires will be used to assess General Fatigue and Quality of Life. The strength and muscle fatigue of the leg muscles (hips, knees and ankles) will be tested using the QMA.

The energy requirements of walking will be tested by monitoring heart rate and the speed of walking over 8 minutes.

The testing will take approximately one hour for questionnaires and one hour for tests of strength, fatigue and the energy cost of walking.

If you would like further information or to volunteer, please contact Deirdre Fitzgerald at the Physiotherapy dept. at Beaumont Hospital. Phone: 01-8092956. Beaumont hopes to provide for travel expenses encountered by anyone who will take part in the study.

TITANIA’S PALACE ... A MODEL IN MINIATURE WITH AN IRISH CONNECTION

THE story of how “Titania’s Palace” came into being, began on a summer’s day in 1907. Major Sir Neville Wilkinson, a Veteran of the Boer Wars, was sitting at his easel in his garden in Mount Merion 2 – 3 miles south of Dublin City centre, and close to UCD Belfield. His young daughter Gwendoline, aged 3, insisted she had seen a fairy disappear in the moss, at the roots of one of the old trees in the garden. Slowly an idea evolved, to build the palace, on the inspiration of Gwendolene, and on the story of Titania and Oberon in Shakespeare’s “A Midsummer nights dream”. The actual building of the Palace was placed in the hands of well known Dublin furniture maker James Hicks, while Sir Neville did most of the decoration, even perfected a technique of painting, a sort of miniature point painting. Sir Neville Wilkinson had collected miniature items of art and models while travelling in many places of the world and the scale of the palace were adjusted, so as to make those items fit in perfect, creating just the right illusion of an inhabited palace. Most of the furniture was made as copies of actual pieces of the time, by very skilled craftsmen and made exactly the way the real pieces were made. Some of the best known artists of the time contributed with various items including examples by Fred. Early, Tommy Lennon, Pierre Metge, Charles Bennett, Horace Uphill and Arthur Dunn. The inlaid floors are the work of Colonel Alexander Gillespie of Vevey.

Titania’s Palace was opened by Her Majesty Queen Mary on July 6th 1922, the anniversary of her Wedding day, (and a full 15 years after the first inspiration to build it), at the Woman’s Exhibition at Olympia, London.

The ground plan of the palace is as a hollow rectangle, nine feet by seven feet by 2 feet 3 inches high (2.75 meter by 2.15 meter by 0.675 meter). It has a total of 16 rooms in all and is built around a central courtyard and was from the beginning lit and heated by electricity. After the inaugural London exhibition, the palace toured all over the British Isles, visited the United States of America, Canada, South America, Australia and New Zealand. Close to 2 million people saw and admired the Palace, and more than £80,000 was collected for the welfare of disabled/neglected children.

After the touring Titania’s Palace came back to Ireland, and for some years around 1960 the “little” girl Gwendoline Wilkinson, lived near Gorey Co. Wexford, at a place called Balinastragh, in a rented house. Here the palace was on permanent display for some years, receiving visitors from near and afar. At a later stage, the Palace was sold to an English amusement park somewhere on the channel coast. In 1978 the Palace came on the market through the Auction House of Christies in London, and Legoland® in Denmark bought it for just under $200,000. When it came to Legoland®, three people were employed full time for the restoration work, including a Jeweller and a Conservationist and the restoration work took almost 1fi year to complete.

A separate building was erected to house the Palace and a collection of Dolls. Some 80 small objects have been removed from the Palace, placed in and highlighted in small separate cabinets on the walls around the room, to give the public a closer look and a better appreciation of the value and beauty of the artefacts. Some of the miniatures were given to Sir Neville by Queen Mary who herself had much enjoyment of collecting miniatures.

Legoland® is in Denmark, in the small town of Billund in Jutland, where it is next door to the Airport. The whole Legoland Park is very much accessible for wheelchair users, outdoors as well as indoors, in restaurants and the exhibitions. The biggest problem for us, is to get over there, as getting around in Denmark is a lot easier than it is here in Ireland.

If you have any interest at all in miniatures, be it furniture or jewels or small ceramics, and you are visiting Denmark then a visit to Billund and Legoland® should be considered in your itinerary, it will be one of those visits you will not regret.

POVL THIM

A Member of Post Polio Support Group

(If you are interested in other articles by Povl, please see his website: http://www.suite101.com/article.cfm/denmark_ scandinavia/78868)

---

CORK GROUP

Convenor: Evelyn Wainwright
Tel/Fax: 021 4847313
Mobile: 086 8829267
Email: evelyn99911@hotmail.com
Venue: Vienna Woods Hotel
Area: Cork (City and County) and Kerry
Meetings: Meets 2nd Wednesday of every second month.

Meeting Dates:
30th November 2005
11th January 2006
8th March 2006.

The Cork Group had a very successful Regional Meeting in St. Dominics, Montenotte on 17th September. (Please see article on page 16) They are all set for their Christmas outing at the Greyhound Track on 30th November.

If you live in this area and would like to attend these social meetings, please give Evelyn a call.

MULLINGAR / ATHLONE GROUP
Convenor: Sean Mulligan
Mobile: 087 2053821
Venue: Creggan Court Hotel
Area: Westmeath, Roscommon
Next Meeting: Meets twice yearly.
Next Meeting Date: 10th March 2006

The Mullingar/Athlone group had their annual dinner on 9th September at the Athlone Rugby Club. It was a very enjoyable evening with18 people attending. The meal was excellent and they were entertained after dinner by Angela Bannon who sang a great selection of old favourites and succeeded in getting a few people up to sing! Their meeting in March 2006 will be an information and social event at the Creggan Court Hotel.

If you live in this area and would like to attend these social meetings, please give Sean a call.

BRAY GROUP
Convenor: Belinda Redmond
Tel/Fax: 01 2860251
Email: redmond286@eircom.net
Venue: Esplanade Hotel, Bray.
Areas: North Wicklow, South Dublin.
Meetings: Meets first Tuesday of every month from March to October.

Meeting Dates:
4th October 2005
7th March 2006
4th April 2006

The Bray group had a very interesting meeting with Deirdre Fitzgerald, physiotherapist from Beaumont Hospital, who is carrying out the research into Post Polio and Fatigue. They invited the Enniscorthy Group to join them for this meeting, and this was a very successful venture.

If you live in this area and would like to attend these social meetings, please give Belinda a call.

LIMERICK GROUP
Convenor: Tom Clifford
Tel: 061 375115
Email: tomclifford1@eircom.net
Venue: Kilmurray Lodge Hotel, Limerick.
Areas: Limerick; Clare; N. Tipperary
Meetings: Meets the first Wednesday of every second month from March to September.
Meeting Dates: 1st March 2006

The Limerick group held their last meeting in Ennis and invited Martin Naughton from DFI to come and talk to them. They found it was a very good idea to change the venue to Ennis occasionally, as this meant that members from this area were able to attend. They are planning their annual dinner, details later.

If you live in this area and would like to attend these social meetings, please give Tom a call.

GALWAY GROUP
Convenor: Bridie McMahon
Tel: 094 9540285
Mobile: 087 9580567
Email: sbmcmahon70@eircom.net
Venue: Menlo Park Hotel, Galway
Meetings: Meets on the first Wednesday of every second month from March to September
Next Meeting Date: 1st March

The Galway group is all set for their Christmas outing to the Greyhound Track in Galway on 4th November. They will then take a break over the winter months and meet again in March.

If you live in this area and would like to attend these social meetings, please give Bridie a call.

ENNISCORTHY GROUP
Convenor: Ann O’Kelly Guerin
Tel: 053 32633
Email: aguerin914@hotmail.com
Venue: Riverside Hotel, Enniscorthy
Areas: South Wicklow, Wexford, Waterford.
Meetings: First Monday of every month

Meeting Dates:
3rd October
7th November
5th December

The Enniscorthy group joined up with the Bray group for their last meeting in September. This proved to be a very successful venture.

If you live in this area and would like to attend these social meetings, please give Ann a call.

LETTERKENNY GROUP
Convenor: John Mangan
Tel: 074 9137465
Venue: Clanree Hotel, Letterkenny
Area: Donegal, Derry
Meetings: Meets twice yearly.
Meeting Dates: Spring 2006

If you live in this area and would like to attend these social meetings, please give John a call.

PORTLAOISE GROUP
Convenor: Tim McEvoy/Paddy Fitzpatrick
Tel: 0502 27204
Mobile: 087 4169372
Venue: Heritage Hotel, Portlaoise
Areas: Offaly, Laois, Kilkenny.
Meetings: First Tuesday of every second month
Meeting Dates: 1st November

The Portlaoise group is planning a regional week-end break in the Spring. They have received Lottery funding and hope to have an enjoyable week-end away.

If you live in this area and would like to attend these social meetings, please give Tim a call.

NEWBRIDGE GROUP
Convenor: Paddy Moyles
Tel: 059 9141283
Venue: The Keadeen Hotel, Newbridge
Areas: Carlow Kildare.
Meetings: Meets quarterly.
Next Meeting Date: 4th October

At their October meeting, the Newbridge group will be making plans to have a speaker to come and talk to them at their Spring meeting. Details later.

If you live in this area and would like to attend these social meetings, please give Paddy a call.

TRAINING WEEK-END

The Western and North Western Areas are hosting a training weekend for Board Members, Regional Reps and Convenors. This has come about in response to a request made at our annual meeting before the AGM.

The Western area has received Lottery funding and we also hope to receive like funding from the North Western area, which will go some way to cover the cost of the week-end, which will take place in the Claregalway Hotel on the last week-end in January. All Board Members, Regional Reps and Convenors will by now have received a letter asking if they can attend. Please send off your reply as soon as possible as we have to finalise the bookings.

If you have any queries about this week-end, please contact Paula Lahiff at 086 3224402.

---

ARTISTIC BORDERS

ADAPT NI is hosting 'Artistic Borders 2005: Universal Accessibility, Action not Words' an all Ireland Conference on October 12th at the Armagh City Hotel.

More details from Activelink at http://www.activelink.ie/ce/active.p hp?id=1592

CHRISTMAS CARDS - The Fund-raising Committee would be very grateful if you could order your Christmas Cards on the enclosed form as soon as possible, so that the office can send them out to you in time.

ACCESS WATCH

Thumbs DOWN:

• The Landsdown Hotel (Flight of steps up to front door and 3 floors with no lift)
• Natural History Museum (access only to first floor)
• Disabled Parking outside Breaffy House Hotel, Castlebar (tour bus parked in the Disabled Parking Bay!)
• Delphi Lodge Spa (Restaurant and bedrooms upstairs, no lift)(If you know of any Thumbs UP or Thumbs DOWN places, let us know - Editor)

---

WOULD YOU BELIEVE .. IT’S JIM!

Jim Costello, our chairperson, is to feature in a forthcoming episode of ‘Would You Believe”. They finished filming in mid September and now the "reel" work starts with RTE deciding what to include and what to leave out! I am sure it will be a significant landmark for the Group having a Polio Survivor featured in one of the major home produced programmes.

Consult the RTE Guide for details of when it is to be on air.

---

POST POLIO SYNDROME

From an Article “Poliomyelitis and the post polio syndrome” by Robin S Howard, from the British Medical Journal, 4th June 2005 (BMJ 2005; 330: 1314-1318) and reprinted with kind permission.

AFTER a period of prolonged stability, many patients with residual impairments following paralytic poliomyelitis develop new disabilities. These late changes were recognised and defined medically in terms of progressive muscular atrophy, weakness, pain, and fatigue, but most patients were more particularly aware of late functional deterioration manifest as impairment of activities of daily living, mobility, upper limb function, and respiratory capacity.

The nature of the condition remains controversial, with most definitions continuing to indicate that the new symptoms and signs should be unrelated to any orthopaedic, neurological, respiratory, or systemic medical illness. Studies of this condition have suggested that new wasting and weakness is due to a distal degeneration of motor units that had been affected by poliomyelitis and which is associated with age and overuse or disuse.

There is a contradiction, however, as most patients who experience postpolio functional deterioration have considerable existing orthopaedic and neurological impairment, rendering them vulnerable to the development of new disabilities, consequence of prolonged stresses on skeletal deformity and previously weakened muscles. Indeed, the extent of the original limb, trunk, respiratory, and bulbar weakness is an important factor in predisposing to the development of late functional deterioration.

Progressive wasting and weakness may occur in limbs already affected by poliomyelitis, and compensatory hypertrophy may occur in the contralateral limb because of weight bearing or distorted mechanics.

The effects of growth are important. Polio that developed before the growth spurt usually causes a progressive scoliosis and limb shortening, culminating in growth retardation. Orthopaedic complications are extremely common and reflect the prolonged abnormal stresses applied to joints because of skeletal deformation and muscle weakness. Abnormalities include fixed flexion deformities, hyperextension or lateral instability of the knee or hip, progressive instability of joints, osteoporosis, fractures, osteoarthrosis, and scoliosis. Cervical spondylosis is manifest as neck pain, and variable radicular sensory symptoms or cord compression occur in some patients. Specialist orthopaedic assessment is necessary in planning appropriate management, but a range of simple supports to knee, ankle, and cervical spine or correction of worn and damaged aids can provide considerable functional improvement.

Respiratory insufficiency becomes evident as progressive nocturnal hypoventilation and may be due to chest wall deformity, progressive scoliosis, or other factors stressing critically compromised ventilation (including respiratory tract infections, obstructive airways disease, obstructive sleep apnoea, obesity, and pregnancy).

The strategies and methods of artificial ventilation used in poliomyelitis are long established, and indications for the use of long term domiciliary positive and, occasionally, negative pressure ventilation have been described. Sleep disturbance with resulting fatigue may be a clue to the development of respiratory insufficiency, although it is important to remember that it may also indicate the presence of an independent sleep disorder such as restless legs syndrome.

Neurological complications often reflect skeletal deformity, and the use of callipers, crutches, and wheelchairs predispose to the development of peripheral nerve entrapment. A small proportion of patients may develop worsening dysphagia, which is not usually associated with other evidence of bulbar weakness, but this rarely progresses to aspiration. Other neurological disturbances have been reported to coexist with postpolio impairments, but there is no evidence to suggest these associations are anything but coincidental.

Management

The effective management of postpolio functional deterioration requires a multidisciplinary approach involving both specific management of increasing impairment and a process of enabling patients to cope with new disabilities.

Polio Survivors are often extremely motivated and driven; they have conquered their disability, often by Volume 2 Issue 3 Autumn 2005 11 ignoring it completely, and have the most remarkable stories of achievement. However, many continue to deal with increasing disability by intensive exercise regimens to regain muscle mass, strength, and function. Although some exercise is necessary to prevent wasting and stiffness from immobility, it is essential to strike a balance so that exercise regimens alleviate symptoms without causing increasing weakness and fatigue in damaged muscles.

The importance of muscular training is supported by randomised controlled trials and a considerable body of literature. Graded exercise can improve symptoms of fatigue, weakness, and pain. Non-swimming exercise in warm water is often helpful in conditioning to exercise, improving mobility, and reducing pain. However, there is uncontrolled and anecdotal evidence that regular graded exercise should be broken up by regular periods of rest. Doctors must recognise that patients may note changes in function that are not manifest by increasing weakness on neurological examination. What seems, on examination, to be only a slight worsening of a severe disability may have devastating functional consequences to the patient. Patients with impaired respiratory function should be closely monitored and be aware of the signs of a developing chest infection. They should have a prophylactic supply of antibiotics, receive flu and pneumococcal immunisation, and avoid smoking.

Excess weight contributes to impaired mobility, development of osteoarthrosis, and respiratory insufficiency from hypoventilation and obstructive sleep apnoea. Weight loss is often difficult to achieve because of reduced mobility, and a dietician is an extremely important member of the management team.

Managing pain can be difficult as it is often generalised and not localised to a joint or a limb. Simple physical measures such as warmth, cold, massage, and passive stretching may be of great value. Transcutaneous electrical nerve stimulation (TENS) and acupuncture are also helpful.

The British Polio Fellowship is an invaluable resource for patients and their families. It provides advice about rehabilitation, self management, welfare benefits, disability equipment, housing, and holiday accommodation.

Although there are no adequate longitudinal studies, experience suggests that postpolio functional deterioration does not necessarily progress once it has occurred. Fatigue and reduced mobility may often progress only slowly or stabilise. The prognosis will also depend on the nature of any underlying cause for the functional deterioration.

Conclusions

Although some patients who have had poliomyelitis may later develop wasting, pain, and fatigue in isolation, in most there is significant underlying weakness and skeletal deformity predisposing to functional deterioration. The severe physical stresses of postpolio disability contribute to the development of progressive orthopaedic, respiratory, neurological, and general medical abnormalities, often exacerbated by intercurrent events. These abnormalities may present with atypical clinical features because of the extent of underlying atrophy and weakness, but many are potentially treatable and most patients can be helped to understand and manage increasing disability. It is essential to emphasise that the symptoms, disabilities, and impairments of postpolio functional deterioration are often amenable to treatment. It is also important to urge caution before attributing functional deterioration to a primary "postpolio syndrome" or "progressive postpolio muscular atrophy."

Useful websites for patients

British Polio Fellowship (www.britishpolio.org)-charity providing advice and support for people who have had polio Post-Polio Health International (www.post-polio.org)- important US organisation providing regular information about research, aetiology, and management of postpolio disability

Lincolnshire Post-Polio Network (www.ott.zynet.co.uk/ polio/lincolnshire/)- extremely helpful resource centre established by a UK regional group with valuable and accurate links to relevant articles and clinical and research sites

(And of course our own website www.ppsg.ie, which is full of information and links for Polio Survivors in an Irish context. -Editor)

The full context of this article, can be found at http://www.bmj.com Navigate to Back Issues - 4th June 2005.

Back to Top