The Survivor Newsletter: Spring 2008

Inside this issue:

TRANSPORT AND PEOPLE WITH DISABILITIES PART 2
WHEN IS A PANIC BUTTON NOT A PANIC BUTTON?
FALLING FLAT: AN EXPLORATION OF POLIO SURVIVORS' FALLS
WORLD POLIO DAY IN BRUSSELS

And much more...

HEAD OFFICE STAFF:

CHIEF EXECUTIVE:
Eamonn Farrell
Email: ceo@ppsg.ie

SERVS/INFO CO-ORDINATOR:
Carol Robinson
Email: admin@ppsg.ie

BOOKKEEPER/ADMIN. ASSISTANT:
Ursula Treacy
Email: info@ppsg.ie

SECRETARY
Ann Doohan

OUTREACH WORKER
Margaret McCarthy
Email: fsw@ppsg.ie

BOARD MEMBERS

Hugh Hamilton: (Chairman)
Tel/Fax: 01 289 4800
Mobile: 087 255 3012
Email: hamsalem@eircom.net

Joan Bradley: (Deputy Chairperson)
Tel/Fax: 01 454 9237
Email: secretary@ppsg.ie

Paula Lahiff: (Secretary & Newsletter Editor)
Tel/Fax: 071 9164791, Mobile: 086 322 4402
Email: newsletter@ppsg.ie

John McFarlane (Treasurer)
Tel: 057-9353552 Fax: 057-9353558
Email: jmcfarlane1@iolfree.ie

Anne Burns (Board Member)
Tel: 01 453 4150
Email: boyneabu@eircom.net

Hugh Conlon: (Board Member)
Tel: 091 751 750 (H) Mobile: 086 803 6145
Email: hcon@eircom.net

Jim Costello: (Board Member)
Tel/Fax: 01 260 0099 (H) Hos: 01 620 6154
Email: jjcos@indigo.ie

Séamus Ó Cinnéide: (Board Member)
Tel: 01 496 1133 (H)
Email: seamus.ocinneide@nuim.ie

Evelyn Wainwright (Board Member)
Tel/Fax: 021 4847313,
Mobile: 086 8829267
Email@ evelyn99911@hotmail.com

Hugh Weir: (Board Member)
Tel: 061 927 030
Fax: 061 927 418
Email: hughweir@ballinakella.com

COMMITTEES

Fund Allocation Committee
Joan Bradley (Chair)
Hugh Conlon
Séamus O Cinnéide
Róisín Nolan

Fundraising
Anne Burns (Chair)
Evelyn Wainwright
Bridie Mc Mahon
James Kinahan

Governance and Nominations
Hugh Conlon (Chair)
Jim Costello
J Mc Farlane
Séamus Ó Cinnéide
Hugh Weir

Social Support
Anne Burns (Chair)
Paula Lahiff
Evelyn Wainwright
Hugh Weir
Barbara Mc Donagh
Tom Gallery
Bridie McMahon

Regional Reps
Paddy Fitzpatrick (HSE Midlands)
Tom Clifford (HSE Mid West)
Evelyn Wainwright (HSE South)
Ann O’Kelly Guerin (HSE South East)
Barbara McDonagh (HSE West)
Paula Lahiff (HSE North West)
Jackie Minnock (HSE North East)

Social Support Convenors
Macrina Clancy, Ann O’Kelly Guerin
Evelyn Wainwright, Paddy Moyles
John Mangan, Sean Mulligan
Tom Clifford, Bridie MMahon
Paddy Fitzpatrick, Brian Cummy,
Ann Barrett, Charlie Smith

Ring Ring Phone Project Leaders
Peggy Brennan, Joan Bradley
Leo Dempsey, Muiris O Chriostóir
Anne Shanahan, Sheila O’Sullivan
Tom Gallery, Christina O’Connor
Susan Dowling, Shirley Martin

Chairman’s Update

Photo of Hugh Hamilton Dear Members

First of all, I would like to wish everybody a happy and peaceful 2008. I hope you will agree that 2007 was a successful year for the Group, thanks to the hard work of many of our members, working together with Eamonn and the staff in Capel Building.

I am delighted to report that our membership has increased by over 14% in the last 12 months and now stands at 750, which is quite an achievement by all concerned, when one considers that Joan started the group, with Jim as the first chairman, only 15 years ago. When launching PLAN 2010 I asked each member to try and recruit another Polio Survivor; it is good to see your efforts coming through in terms of new recruits. Keep up the good work! However, it does mean that, with a growing membership, there is a growing demand for aids and appliances, physiotherapy and other services, and as there is no increase in income from the HSE, responsibility for additional funds falls on the fundraising committee. Anne and her committee have done amazingly well in 2007 by raising over €100,000, and we congratulate them, and hope that members will help them have an equally successful 2008.

During the last 4 months there have been some changes in the office. Karen Holmes has left us, and we thank her for her good work during her time with us. We are now seeking a part time replacement to assist Carol with providing supports to you. Also, Margaret McCarthy has joined us as an Outreach worker for a limited period to help us to extend our support to Polio Survivors in the North Dublin area. We have also obtained funding to employ a Regional Development Officer, and this post has been advertised.

We have made new friends and renewed some old contacts with fellow Polio Survivors in Northern Ireland, and we are looking forward to welcoming some of them to our AGM/Conference week-end in Sligo in April.

The European Polio Union (EPU) of which we are members, had a demonstration in Brussels in October drawing attention to the challenges faced by Polio Survivors throughout Europe, and we were well represented with about 15 members from Ireland (see front page photo). This was followed by talks by two eminent neurologists, Drs Nollet (Belgium) and Borg (Sweden), both of whom specialise in Polio and Post Polio Syndrome. The objectives of the EPU are to coordinate research on the diagnosis and treatment of Post Polio Syndrome (PPS) within the European Union, and to work with others to gather data on its prevalence in Europe, and, ultimately, to better the lives, throughout the EU, of those with PPS. At the moment we have 12 countries represented in the EPU, and are trying to make contact with other groups like ourselves, particularly in Eastern European countries. If anybody has contacts with Polio Survivors or groups in Eastern Europe please let me know.

We have recently agreed to help finance some research in both Beaumont Hospital and Cork University Hospital, each project obviously aimed at assisting Polio Survivors, and we hope to give you further details before or at the AGM.

As many of you will have read, Senator Geraldine Feeney asked the Minister of Health, Ms Mary Harney, when she appeared before the Oireachtas Health Committee with Mr Brendan Drumm of the HSE, what she was doing to assist those with PPS following the Group’s submission to this Committee some time ago by Jim Costello and Joan Bradley. Minister Harney replied that she accepted that those with PPS deserved special recognition. I can assure you that we are following this up for clarification by the Minister, and hopefully we may have something to report to you soon.

Paula Lahiff is stepping down as editor of THE SURVIVOR having been in this position for 10 years, and we are fortunate that John McFarlane has agreed to take over the job. I would like to thank Paula on behalf of all the members for doing such a wonderful job in producing a magazine which we all look forward to reading, as it is always full of fun, information and helpful suggestions. Paula is of course our Company Secretary, and, fortunately, will be taking on many other responsibilities for the Group, and we wish both Paula and John much success in their respective roles.

I am sure that, like me, you are looking forward to the AGM weekend on April 18/19 of which you can read more elsewhere in this issue.

Hugh Hamilton

From the editor

Photo Of Paula Lahiff Happy New Year to you all.

Well my big news is that I have decided, that after 10 years as editor of THE SURVIVOR, I am going to ‘pass the baton’ to John McFarlane, who I am sure will bring new ideas and a different approach, and consequently this is my last issue as Editor. Of course I will be still taking an active part on the Board, and most particularly in the area of social support and regional development for the Group. I have had such a good time as editor and have been privileged to see the newsletter grow from a four page fold, typed up on my own computer, to a 20 page quarterly magazine, of which we can all be proud. Many thanks to all who helped me along the way, including Jim and Joan for entrusting me with the job in the first place, to the various Group Administrators and our current CEO and staff, to Hugh Weir for his advice, to those who assisted with the graphic design, printing and distribution, but especially to you our members, who sent in contributions and greetings and generally kept me on the straight and narrow! I am sure John will continue to give you a strong and vibrant newsletter, so do keep your contributions coming.

My other news is that I have completed my Higher Certificate in Arts in Advocacy Studies and was conferred in November last. I am always available if you need any information on rights and entitlements and any disability issues.

Organisation of the AGM and Conference in Sligo on 18th/19th April continues apace, and we have had a great response to our exhibition CREATIVITY AND US, which will take place alongside this event. So don’t forget to put the date in your diary, and come along to Sligo for a week-end of information, entertainment and networking.

As usual this issue of THE SURVIVOR is packed full of interesting and informative articles, so put your feet up, get yourself a nice of cup of tea (keep collecting those tokens! See page 8), and enjoy the newsletter!

If you have any articles for the next issue, please send them to John McFarlane at jmcfarlane1@iolfree.ie or to the PPSG office.

Paula Lahiff - Editor

Transport and People with Disabilities:
Part II – Public Transport

Acting on difficulties accessing public transport noted to us by our members, our CE Eamonn wrote to Bus Eireann, Dublin Bus and Irish Rail, asking them to let us know:

On what routes they provide independently accessible transport
The degree to which assistance is available on routes not independently accessible
A list of those routes which are not accessible.

The following is a summary of their replies:

Bus Eireann

They replied assuring us that they do our utmost to facilitate their customers with a disability. They say they are committed to maintaining services that promote equality and prohibit discrimination and that they recognise the importance of providing a relevant service to meet all their customers varied needs. They go on to say that they have delivered disability awareness training to their staff and in doing so have facilitated over 4,300 people to enhance their understanding and experience of people with disabilities. There has been an extensive refurbishment of many of their bus stations to make them more accessible, and they have worked closely with the National Disability Authority in carrying out these improvements.

They went on to tell us that have achieved practically a complete fleet conversion to low floor wheelchair accessible buses on all their city routes, i.e. Cork, Limerick, Galway and Waterford, and in the future all vehicles purchased will be fully accessible.

The inter-urban services routes are operated by coach type vehicles and they agree that these are not low floor or wheelchair accessible at present. However, since 1990 all new coaches purchases by them feature a ‘kneeling’ facility, whereby the front of the coach can be lowered by provide easier access to the first internal step.

Their longer commuter routes are also operated by coach type vehicles and are currently not fully accessible. However, dedicated low floor wheelchair accessible double deck buses are assigned to Bus Eireann services on Dublin/Ashbourne (103) and Dublin/Drogheda (101) routes.

They assure us that their staff will assist as far as is practicable with any requests for customer assistance, but they are not in a position to provide dedicated specialised assistance for any category of customer.

Dublin Bus

In their reply they say that they have a travel assistance program in place and they enclosed a brochure for our information. To date, almost 60% of their fleet and over one third of routes are operated by low floor buses, which have the following features:

Low floor single step
Kneeling suspension to further reduce entry step height
Retractable ramp at entrance
Improved grip bars
Palm-activated bell pushes
Priority space for wheelchair user
Wider gangways for customer comfort.

The brochure informs us that the Travel Assistance Scheme offers practical advice for disabled people who are planning a journey using public transport and they also can provide someone to accompany you for the first few times you use their service. They can offer assistance to anyone over 18 years of age between 8.00 a.m. and 6.00 p.m. Monday to Friday. If you contact their Travel Assistance Co-ordinator by phone, post or email, he/she will take your details, establish your requirements and make contact with you within 24 hours to arrange a date and time to travel assist you.

The contact details are:
Dolores Quinn, Accessibility Officer, Business Development, Dublin Bus, 59 Upper O’Connell Street, Dublin 1.
Tel: 01 7033204.
Email: travelassist@dublinbus.ie

A list of accessible bus routes is also included in the brochure.

The letter from Dublin Bus concludes that bus drivers may assist disabled customers if they wish to, but they are not compelled to do.

Irish Rail

While we did not get a reply to our letter from Irish Rail, the following information for people with disabilities is to be found on their website.

Their brochure ‘A New Guide For Rail Passengers with Disabilities’ can be downloaded as a pdf file from http://www.irishrail.ie/your_journey/disabled_access.asp

Their website also gives information on travel for people with disabilities.

They tell us: “Whenever possible, please let us know in advance of your travel plans so that arrangements can be made for you to have as comfortable a journey as possible.

Similar arrangements can also be made at your destination station and at an intermediate station if you need to change trains.

We are better able to assist you if you contact us as far in advance as possible, but try to give at least 24-hours’ notice of your journey.

When contacting your local station or the accessibility office, please give the following details:

Date of travel and departure time of the train.
Destination station and any intermediate stations where a change of train is necessary.
Nature of disability.
Means of transport to and from departure and arrival stations e.g. taxi, private car and whether someone is meeting you at your destination.
Whether you will be travelling alone or with a companion.
Whether assistance will be required at the departure and arrival stations and if so how staff will be able to identify you.
Any other details to assist railway staff or which you wish to clarify.

Please give similar details about your return journey, if known, particularly if you are returning the same day or within a few days.

If you need to cancel a journey for which special arrangements have been made, please let us know so that staff can be made available to assist others.

This guide is intended to assist you in planning your journey.”

Stations

Access details for each station, is available on the website.

Trains

Trains require a ramp to permit boarding from the platform to the carriages. A special portable ramp is used for this purpose. These are currently available at all staffed stations and on board some trains.

At some stations there is a gap between the platform and the carriage. This may create difficulty for the mobility and visually impaired and assistance may be required.

There is a dedicated wheelchair accessible space in the dining car of the older trains. All dining cars in the older fleet have been modified to provide wheelchair access and accommodation. The new carriages have all been designed with accessibility in mind.

In the event of numerous wheelchair users travelling, we need advance notice to facilitate the removal of seats and tables from a coach so that the necessary accommodation can be provided.

A small number of services are operated by coaches which are not accessible to wheelchair users, so advance notice or enquiry will ensure that customers are not disappointed.

Guide dogs are welcome on all Iarnród Éireann services.

(We would be interested to know your experiences – good or bad – when travelling on public transport. Personally I have found in general, that people are more than willing to assist you, but, in the case of Irish Rail, you have to make your needs known in advance. I would like to hear from anyone who has used the Travel Assistance Scheme in Dublin Bus – it sounds great! I know our public transport still leaves a lot to be desired when it comes to accessible transport, but I do believe that we are getting there slowly! Editor)

In the final part of this series, we will examine the replies to our letter from our air and ferry services.

REGIONAL ROUND-UP

CORK

Convenor: Evelyn Wainwright
Tel: 021 447313
Email: evelyn99911@hotmail.com

The Southern Region Social Support Group went ‘to the Dogs’ on Saturday 19th January, there will be a write up in next issue. They will hold a planning meeting on Sunday 3rd February at 3.00 p.m. in Vienna Woods Hotel. Their next group meeting will be held on 12th March in the Vienna Woods Hotel. (See also Southern Area News).

KERRY

Convenor: Charlie Smith
Tel: 066 9768530
email: charlie12smith@eircom.net

There is to be a Christmas lunch - no jokes please, I wanted to get the first Christmas lunch in for 2008! Well it’s only about 340 days to go! It will be held at the Dromhall Hotel, Muckross Road, Killarney (opposite Randles car showroom).on Sunday 17th February at one o’clock. The PPSG have been very generous and supplied most of the money and all we have to supply is a fiver a head, so the offer extends to members and only one other person. If you want to invite more than one other person then the full cost is €25 a head. So please come – it promises to be a great afternoon! Please send your €5 a head (or €25 a head for more than one other person) no later than Friday 8th February made payable to the PPSG care of Charlie Smith, Neadine, Curraheen, Glenbeigh, County Kerry. If you have any queries my phone number is 085 140 6029 – but after 6 pm please! Charlie Smith

BRAY

Convenor: Macrina Clancy
Tel: 01 2853561, 086 8386555
Email: macrinaclancy@gmail.com

Meetings first Tuesdays of the month March to October. Next meeting 4th March, venue to be announced.

On Tuesday 4th December the Bray group had their Christmas party and it was very well attended. The venue was the Glenview Hotel, Glen o’ the Downs, Co Wicklow. The meal was magnificent. The manager, Paul Murphy and his staff are to be thanked as they attended to our every need. It is great to have your coat taken and the heavy dining chairs sorted as you desire. As if this attention was not enough, those miscreants who stayed overnight were “treated” to Godwin’s rendition of various “Arias” from his latest show. Roll on our next meal! Joyce Henderson

GALWAY

Convenor: Bridie McMahon
Tel: 094 9540285
Email: sbmcmahon70@eircom.net

Bridie attended the World Polio Day in Brussels – see her report elsewhere in this issue. She was also very involved in fund-raising, through church gate collections and a variety show. The Galway Group has started collecting photos of their activities in an album – so watch out for the flash bulb, you are on record! The Annual Dinner was held on Friday 18th January in Menlo Park Hotel. As this was held after going to press, the write up will appear in the next issue of THE SURVIVOR.

MAYO

Convenor: Ann and Bernard Barrett
Tel: 087 6467448

This is a new group set up as a subsidiary of the western region and while the numbers attending their meetings are small, it is only getting up and running, so if you live in Mayo and would like to attend their annual dinner, give Ann and Bernard a call. You would be most welcome. The dinner will be held on Monday 18th February in Courthouse Hotel, Station Road, Ballina.

ATHLONE

Convenor: Sean Mulligan
Tel: 090 6439046
Email: j2smulligan@eircom.net

The Athlone/Midlands Annual Christmas Meeting was held on the 9th of November ‘07 in the Bounty, Athlone Rugby Club, Athlone.

Sean Mulligan welcomed everybody present, especially all who travelled a distance to the function. Then Paula Lahiff addressed the group and brought us up to date on all ongoing matters in PPSG. We then proceeded with our Christmas meal which Fr. Michael Golden introduced with a short talk and prayer.

photo of Jim and Mary Horan at the Athlone Annual Dinner A total of eighteen attended and there were five apologies. We had a great sing song and wonderful entertainment with participation/interaction by the whole group. Good wishes for Christmas and the New Year were exchanged and we look forward to our Spring meeting and the AGM in Sligo.

Next meeting will likely be in March at the Creggan Court Hotel
Sean Mulligan

PORTLAOISE:

Convenor: Paddy Fitzpatrick
Tel: 0505 46738
Email: paddyfitz3@eircom.net

We had a great night for our Christmas dinner in the Heritage Hotel Portlaoise on the 30th of November. We were expecting 19 for dinner that night and 16 showed up which was wonderful. We had a great chat together and got filled in on all the latest news around. The Hotel was wonderful and the meal was excellent.

Next meeting Tuesday 12th February Heritage Hotel, Portlaoise.
Paddy Fitzpatrick

LIMERICK:

Convenor: Tom Clifford
Tel: 061 375115
Email: tomclifford1@eircom.net

No meetings this quarter.

NEWBRIDGE:

Convenor: Paddy Moyles
Tel: 059 9141283

The Group had their first lunch outing at the Clonard Hotel, Athy on the afternoon of 9th December last. The nine members who attended travelled from as far afield as Carlow and Maynooth enjoyed the few hours having the meal and the chat afterwards. They would like to express their appreciation to the Management and Staff at the Hotel for their kindness and courtesy. The Group are looking forward to their next outing. Next meeting will be held 26th February in Keadeen Hotel, Newbridge.
Paddy Moyles

ENNISCORTHY:

Convenor: Anne O’Kelly Guerin
Tel: 053 32633
Email: aguerin914@hotmail.com

The Enniscorthy Christmas dinner was held on the 17th of December in The Riverbank Hotel in Enniscorthy.

Altbough there were only a few present, in spite of the fact that Ann had been ringing around to try to encourage people to attend, those who did come enjoyed the meal and the company. A pleasant evening for us all.

Next meeting Monday 3rd March in Riverpark Hotel, Enniscorthy, and from then on the first Monday of the month during the summer months
Povl Thim.

SLIGO

Convenor: Brian Crummy
Tel: 071 9160404
Email: briangcrummy@hotmail.com

The first meeting of this new social support group will be held in the Sligo City Hotel on Thursday 28th February at 7.30 p.m. We will have a general introduction and a chat and then make plans as to how we would like to see this group develop. If you live in the Sligo area or environs, we would love to see you there. Phone Brian for more details.

DONEGAL

Convenor: John Mangan
Tel: 074 9137465

No meetings this quarter.

Who says anti-disability discrimination legislation does not work?

In Ireland over the past few years there has been ongoing discussion and argument whether there should be one piece of legislation on anti-disability discrimination. Currently the definitions of disability can vary from one piece of law to another. The same goes for what may count as discrimination. Many countries such as the USA, Australia, South Africa and New Zealand have gone down the one law route, as has the UK. At last we have some proof that this approach works – over the holidays a Polio Survivor was going about his business (last minute Christmas shopping) in London and had to return to his car parked in a side street. Just so happened that this is where some ladies “conduct” their business after dark. As he approached his car in his wheelchair, one of these ladies offered her services at a discounted rate. He politely declined, wished her a Merry Christmas, and went on his way. Now who can say single anti disability discrimination legislation does not work – at least in the Provision of Goods and Services!

Fundraising News

The League of Health

The PPSG wishes to thank the League of Health for adopting our organisation as their sponsored charity in 2006/07. The League of Health, which has centres in Dublin and adjacent counties, works to promotes fitness among ladies. They raised the funds through campaigns which included the collection of “brown” coins, the proceeds from the sale of their calendar, and raffles and donations at their Annual Dinner held in October at the National Yacht Club, Dunlaoghaire, which was attended by Hugh Hamilton and Anne Burns. A cheque for a very generous €8,000 was presented to Hugh by Carol MacNeaney on behalf of the League on 13th November at the end of one of their fitness classes at Taney Church Hall, Dundrum, Dublin.

We thank the League of Health for their generosity to the Post Polio Support Group.

“Hunting the Wren”

A novel fundraising activity organised by member Tom Lane on St Stephens’ Day, involved he and friends dressing up as wren boys, visiting and entertaining patrons in various local Inns and making a collection for the PPSG. Tom and his musician friends entertained in pubs including in Cahir, Mitchelstown, Clogheen, Ballyporeen and in his own local area of Anglesborough. A big thank you goes to Tom and his friends. Tom is well known within the Cork Social Support Group as an accomplished accordionist.

Lyons Tea Charity Promotion

Up until August next, Lyons Tea are giving away €10,000 each month to an Irish Charity. You can help the PPSG by collecting 20 tokens from special Lyons tea packs and sending them with your name and address, tel. no., including a description of how our Charity shows extraordinary qualities to: Lyons Charity promotion, PO Box 10850, Dublin 2.

Alternatively, a group of members and friends could accumulate the required 20 tokens with one person nominated to send the entry to Lyons Tea. Many thanks to everyone who has already sent in tokens – keep them coming, we may hit the jackpot yet!

June Marathons

Once again the PPSG will be involved in raising funds from sponsorship in the Dublin Flora Women’s Mini Marathon (the 26th year of this event), and the Cork City Marathon (this full marathon revived last year after 21 years) both of which take place on the June bank holiday Monday 2nd June 2008.

Dublin Flora Women’s Mini Marathon: This 10k marathon with an expected 40,000 participants commences at 3.00pm Fitzwilliam Sq., and finishes St Stephen’s Green, Dublin. The race is confined to ladies only and entrants must be at least 14 years old on the date of the event. Entries must be made on the official form which will appear in the “Evening Herald” every Thursday and Saturday from Thurs. 28 February or on line from 29 February on www.florawomensminimarathon.ie. Entry fee is €15 or €22 for joggers/runners who elect to use a timing chip. On-line entries incur an extra €1.00 fee to cover bank processing charge. The closing date is 22nd April or earlier if the maximum number of entries allowed is already reached.

PPSG sponsorship cards and T-shirts will be available on request. Enquiries to Anne Burns tel. 01 4534150 email: boyneabu@eircom.net., or from the marathon office by contacting: email: info@womensminimarathon.ie or Telephone: 2930984.

The Cork City Marathon is expected to have 8,000 ladies and gents taking part, who can enter as individuals or as part of a relay team. A staggered fee charge will arise to encourage early entries. Entries received by the marathon office by 31 March will cost €50 (individual), €80 (team); 1-28 April €60 (individual), €90 (team) and 29 April – 9 May, €70 (individual) and €100 (team). Entries can also be made on line www.corkcitymarathon.ie. PPSG sponsorship cards and free T-shirts will be available on request. Enquiries to Evelyn Wainwright tel/fax 021 4847313, mobile 086 8829267, email: evelyn99911@hotmail.com, or to the marathon office tel. 021 4924170 or by email: info@corkmarathon.ie.

Thanks to Bridie and her team who undertook church gate collections in Co Mayo, and to all those other people who helped us out in any way. All suggestions you have for fundraising would be appreciated, or if you feel you might be able to organise fundraising for the PPSG in your local area please let us know. Thank you for your generous support during 2007 in which we raised the substantial sum of over €100,000. As a result, among other things, we were able to provide extra physiotherapy and heating grants to many of our members.

Anne Burns

BITS AND TIPS

Emergency Assistance on your mobile

If you have an emergency situation, you can get straight through to the emergency helpline on your mobile phone by dialing 112 (999 does not work if you have no signal).

Breakdown Assistance Free of Charge

The Automobile Association will come to the assistance of disabled drivers free of charge even if you are not an AA member. You just have to show them your Disabled Drivers Association membership card. I had to use this service recently and within 20 minutes a very helpful AA officer had me up and running at no charge. Well done AA!

Reclaim tax on hydrotherapy

It can be very beneficial for Polio Survivors to swim or even move their joints in water. As hydrotherapy pools attached to hospitals are few and far between, many of us join the leisure centre in the local hotel. This can lead to considerable expense, but you can reclaim tax back on this if you get a note from your doctor to state that you need hydrotherapy, and then get an invoice from the leisure centre for the cost of hydrotherapy for the year. You can then include this on your Med 1 form with your other medical expenses when sending in your end of year returns and you should get tax back on total medical expenses over €250 for the year. This can even be done online at www.revenue.ie It is well known that there are millions of euro not reclaimed for expenses – make sure you reclaim yours!

Cleaning Tip

If you like to keep your shower clean and are mobile enough to clean it yourself, here is a tip:

When you finish your shower take a cleaning sponge into the shower and from your seated position on the shower chair, give your tiles and doors a wipe down. The steam from the shower makes the grouting easier to clean and you use no chemicals!

If your shower does need a good cleaning however, then get someone else to do that for you - and once clean follow the above instructions yourself to keep it that way!
Thanks to Jackie Minnock for this tip

Parking at Dublin Airport

Did you know that those of you who have a car parking disability (blue) badge, can park in Block B of Dublin Airport (the short term area beside the terminal building) and only have to pay €9.50 per day, which is the same as the rate for the long term area. This is instead of the full charge which is considerably more. Well done Dublin Airport!Thanks to Hugh Hamilton for this tip

Annual Subscriptions are now due

Annual subs for the year 2008 are now due. The cost of membership remains at €10 per year so that it stays within the reach of all our members. However if you cannot afford €10 then we will understand, but on the other hand, if you would like to make a donation of more than this amount please do so and you can be assured that it will be put to very good use. Subscriptions can be sent to the office by cheque or postal order (please do not send cash by post!) or made by credit card through Paypal on our website www.ppsg.ie

Nominations for Board Members

Just a reminder that if you would like to nominate someone to the Board of the PPSG, please do so in writing to the office not later than five weeks before the AGM which will be held on 19th April 2008. You must get the agreement of the person you are nominating and they will be required to let us have a short résumé and a recent photo which will be circulated with AGM notification.

Interesting Website

For those members who need ventilator assistance, check out website http://www.ventusers.org

Great New Service from Age Action Ireland

Have you a small repair job which you would like to have done for you?

The Care and Repair programme uses a pool of trustworthy volunteers and handypersons to carry out minor repairs for older people. The service is free; you only pay for the materials used (though voluntary donations are welcome).

The programme is run by Age Action Ireland.

They are currently concentrating on the Dublin Docklands area but will accept enquiries from the inner city in general. They also have a very active programme in Galway City.

For more information, please contact:

Care & Repair Programme, Dublin & Galway
Lo Call: 1890 369 369
Website: http://www.ageaction.ie/services.asp
Email: care&repairdublin@ageaction.ie

Assessment of Housing Needs 2008.

An assessment of housing needs is to be undertaken by all housing authorities on 31st March next. If you feel that you require Council Housing or will need same in the foreseeable future, please obtain an application form from your Council Offices and return the completed form to them before 18th February in order to be included in the assessment. If you are already on the housing list, please submit up-to-date information of your circumstances on a new housing application form.

It is vital that people with disabilities make their needs known to local authorities to enable them to plan for future housing.

Ring Ring Phone Project

As part of our phone friendship network among members, known as the Ring Ring Phone Project, we have been asked by Community Network, a UK based charity, to take part in FriendshipLinks. These are ‘virtual’ social clubs - a way of replacing the chat over the garden fence - bringing the outside inside. They enable people who are housebound - either due to frailty, disability, geography or the caring responsibilities of others - to come together and bond over the telephone through teleconferencing. They have received funding from BT to extend their friendship links through teleconferencing to disability organisations in Ireland and following email contact with them, they have invited the PPSG to participate.

Two of our members – Susan Dowling and Shirley Martin – have agreed to be leaders of this project and have undertaken training over the phone with a trainer from Community Network. We hope to have two groups of 6/8 members plus the leader, who will meet up over the phone on a monthly basis for a 45 minute chat on a teleconference line (all 8 people are on the phone at the same time!). This is a really exciting development to our phone friendship network, and if you would like to take part in one of these groups please let them know at the PPSG office.

In the meantime, over 20 members continue to receive regular phone calls from our Ring Ring Phone Project Leaders – this is a valuable way for people to keep in touch and have a chat with someone who understands where they are coming from. Many thanks to all concerned.

BOOK CLUB

with Anne Shanahan

BOOK TITLES FOR SPRING 2008

Title: A Spring in my Step; Author: Joan McDonnell
Subject: Memoir
Joan McDonnell is member of PPSG and many of you will have read this book. However, I had not read it until Joan kindly sent me a copy. I think all PPSG members will identify with this gem. I was transported back through my own childhood from the very first page when she stood on the platform at Colbert Station in Limerick….this same platform from which I took the train, many times, to hospital in Dublin. A place of great sadness at my departure - but oh! what joy at my return! (Thanks Joan for your suggestions)

Title: Out Stealing Horses; Author: Per Petterson
Subject: Fiction.
Winner of the IMPAC Prize. Set in Norway. A simple story about a 67-year-old man’s remembrance of things past and how events in the summer of 1948 shaped the rest of his life. Paula Lahiff loved this book. (Thanks Paula for your suggestions)

Title: Lines I Love; Author: Mary Kennedy
Subject: Collection of sayings & quotes
A daughter combines her mother’s pieces with her own collection.

Title: Gideon’s Spies; Author: Gordon Thomas
Subject: Secret history of the Mossad
A fantastic book - extremely well written – excellent information and history
This book is recommended by a PPSG member whose name was not on the form. (Thanks for suggestions)

Title: Child Of My Love; Author: Sue Ryder
Subject: An autobiography by Baroness Ryder of Warsaw
This book is a favourite of Madeleine Goacher. (Thanks Madeleine for your suggestions)

Title: The Long Walk to Freedom; Author: Nelson Mandela
Subject: The autobiography of Nelson Mandela
This is available in AUDIO CD by Nelson Mandela and Danny Glover
Denis Curtin recommends this very interesting book. (Thanks Denis for your suggestions)

Title: The Return Journey Stories; Author: Maeve Binchy
Subject: Short stories
Each one of them unique and bitter-sweet. In plain and straightforward language she describes the deepest feeling of her characters. Ideal bed-time or holiday on the beach read.

SUMMARY OF BOOK REVIEWS WINTER 2007

The Kite Runner: KhaledHosseine

Three people sent in their comments. They loved it and said that it portrayed very well the socio-economic differences in this society and how people behaved and were seemingly content in their allotted ‘place’ in society. The father/son relationship was very thought provoking if somewhat disturbing. However, I was a bit disappointed in the book myself.

Now that the film of The Kite Runner is showing in the cinemas it will be interesting to see if the film does justice to the book. Let me know what you think.

The Gathering: Anne Enright.

Surprisingly, I got no reviews back for this book.

From my own reading, I was trapped by it. By that I mean that I hated the ‘language’ – was disturbed by the content – but couldn’t put it down! It was emotionally draining.

I would be very interested in other peoples’ comments on this book.

Dirty War, Clean Hands: Paddy Woodworth

No reviews received yet. This is a heavy book which takes some time to read. I am still hoping for feed-back for our next review.

Walk the Blue Fields: Claire Keegan

Two reviews received – both enjoyed this book and one gave a copy to a friend for Christmas. I am enjoying it at present. I find that short stories are great when times are busy.

Wuthering Heights: Emily Bronte.

I spoke to four people about this book. One man couldn’t understand a word of it! Rubbish! The others like myself, loved it- couldn’t put it down – even though we all had read it before (me several times).

No film could do this book justice, however there is an old black-and-white film which is very good. It is also available on AUDIO CD

Keep your reviews coming please - also suggested titles.

Happy reading
Anne

BOOK REVIEW

Please send your reviews/suggestions to: Anne Shanahan:
Email: annesh@eircom.net, Fax: PPSG: 01-8898924.
Discussion Forum: www.ppsg.ie.Tel: Anne 01-2953630
Letter: Anne Shanahan, 20 Wesley Heights, Dublin 16

When you have read a book, please send me your reviews/comments to be in time for the Summer issue of The Survivor.

BOOK TITLE
Did you enjoy this book?   YES or NO
How do you rate this book   1-5 (1 poor: 5 excellent)
Did you like the writing style?   YES or NO
Would you read more by this author?   YES or NO
Did you learn much from this book?     YES or NO
Was it:

Heavy going
A tear-jerker
A page-turner
Light and relaxing
Emotionally draining
Great subject for discussion
Can’t wait to tell my friend about it

Your comments (as long as you wish ...)
Your name...
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The Spiritual Corner

Echoes

Recently I have become aware that each morning I emerge slowly out of darkness into light; a child pushed gently out of the womb of God. Then at night I slip back into the womb, my sleep the perfect act of prayer, a beautiful trust, awaiting another resurrection, whether in this world or the next.

I awoke this morning
dripping with the dew of creation.
Christ’s hand resting on my shoulder
reluctant to let go.
A dawn,
a beginning
God caught in my making.

There is nothing new about that, but what is new for me is that I now realise this is reality. It is not only a series of metaphors. Somehow, in the poem above I have been graced to catch God in my making even though it is only through a glass darkly. Christ’s hand does rest on my shoulder in Athlone today. It would be a mistake to think that I have already been created and that the lines above are nothing more than a fanciful description of something. They are a description of something that at the moment is happening and which the human imagination is able to perceive and render present.

Fr. Michael Golden.

Accessible Fun in the Sun!

I am a very lucky person. I have just returned from a wonderful Christmas holiday in Tenerife! I love to head for the sun during the winter as I find that the warmth helps to ease the late effects of polio such as aching muscles and poor circulation. The Canary Islands provide an excellent climate for a break at this time of year.

We stay in the south of Tenerife. One of the main reasons for choosing the area called Arona around Playa de Las Americas and Los Cristianos is that it is so accessible for people with disabilities. Most of the 7 kilometre seafront promenade and local streets are fully accessible which provides a wonderful environment for freedom of movement. Some beaches have been made accessible by the provision of ramps and wooden pathways with sun beds and umbrellas being placed on adjoining boarded areas. Sports activities are available ranging from the use of an amphibious wheelchair to swimming, diving, tennis and athletics. Many leisure facilities such as shopping centres, theme parks, sea parks, museums and cinemas are also accessible. The Arona local authority have produced a Barrier Free Guidebook which has details of all aspects of the area and is available on their website www.arona.org

With regard to accommodation, there is a hotel called the Kurhotel Mar Y Sol that caters specifically for the needs of people with disabilities. Details are available on their website www.marysol.org Many other hotels are accessible and some have rooms which are adapted for people with disabilities. The Barrier Free Guidebook gives information on these hotels but the facilities in the rooms vary considerably so you are advised to check that the room and bathroom are suitable for your individual needs. Some of these hotels are available through Irish Tour Operators or you could book directly with the hotel and purchase flights separately.

The other service that is important to me when travelling abroad is the hire of equipment. In Tenerife there are three companies providing such a service but I hire a scooter from the company called Orange Badge who provide a very efficient and friendly service. They have everything from walking frames to hoists and the equipment is delivered to your accommodation. The company also have some apartments for rent that offer facilities for people with disabilities and can arrange caring and nursing services. They also offer a Meet and Greet service at the airport where you are met at passport control, assisted through baggage reclaim and transported to your accommodation in a specially adapted minibus. Their transport may also be used for daytrips. For further information, see their website www.orangebadge.com

I hope that some of you may have the opportunity to share in the pleasure and relaxation that Liam and I have enjoyed when visiting this lovely island.
Susan Dowling

Caption Competition Results:

Many thanks to everyone who sent in captions for the first page of the last issue of THE SURVIVOR.

Congratulations to Patricia Milburn who submitted the winning caption:

“You seem to have more power than me, Joan!”

A voucher for €50 is winging its way to you Patricia.

Polio Story

Extract from novel/memoir ‘ONE MORTAL NIGHT’
By Patrick Kelleher

Photo of Patrick Kelleher (Patrick was deemed fit enough to enlist in the army in spite of his Polio, to be ready to offer himself as canon fodder to some putative enemy one day, but not fit enough for the ‘beauty parade’ aspect of army camp.)

I had had a slight brush with polio as a boy and my right hip muscles were slightly weakened, but it only showed up in my gait when I was tired. And so, as I marched, Smiler roared at me every so often, “Pick it up Deeny, pick it up man and stop dragging your feet.” I felt thoroughly embarrassed that my secret affliction was spotted, and I was later to learn that I would not be allowed to parade for prize-giving, Smiler believing that I would endanger the chances of the entire unit winning some accolade or other. And so I was so spend long periods under canvas, reading the volume I had been lent by Donal, ironically entitled ‘Les Miserables’. Donal never said much about his time in the army and I wondered afterwards if in choosing that book for me he too had found the experience pretty harrowing.

Leaving the south coast, we duly arrived in a seaside town in the West, and the rain poured down in torrents. Lying on our bellies on what had been a golf course we were invited to imagine that enemy tanks would soon come over the hill. We had not been issued with waterproof groundsheets and soon were soaked to the skin. But whether war was real of imagined, rain or no rain, the pretence had to go on. We moved up the golf course snake-like on our stomachs. I never felt so absurdly preoccupied before in my life. I had been told before coming down that effectively army camp would be a paid holiday and that with any luck I would find myself in the embrace of some of the beautiful girls of County Clare. In the event, I was to embrace nothing more animated than the cold wet steel of my Lee Enfield rifle.

On my very first evening in Clare my brief period of ‘active service’ came to an abrupt end. I was not long back in my billet in a Nissan hut when I discovered that not only was my voice gone, but that I was breathing only with great difficulty. The medical people were summoned and seemed alarmed. I was swept away in the night by ambulance to Collins Military Barracks Hospital in Cork city and given a bed in a vast ward containing only three patients. Miraculously on arrival, my illness disappeared as quickly as it had come. I could only conclude that its source was psychological and since it was not therefore visible, my physical body took responsibility so that I would be given treatment.

Father had not revealed to anyone my misadventure, and so, though I had failed to win a single star for my army camp efforts, or even to complete the course, when I arrived home the villagers came out to cheer me. And as a strode up the village from the train, looking lean and tanned, as if returning from the war, many were approving, one lady gushingly saying to me, “while we have young men like you prepared to defend us, the country is in safe hands”.

Dogs for Christmas

Photo of dog In February my son brought home a dog that had been abandoned outside Champs supermarket for 4 days. Once again someone had been given a dog for Christmas and after a few weeks became disenchanted with it. The sight of a heap of wet black fur in front of the fire melted my heart. We called him Champ for obvious reasons.

He is a real mixture, he has spayed front paws, a long body covered in beautiful black fur and his back legs are longer than his front, so that he is always walking downhill.

When God had finished making him He said, ‘Well you are no particular breed but you are a handsome dog. Walk with your head high and your tail straight up; I will put extra long hairs on it so that you look as if you are flying the flag.

Champ has a great personality but is lucky to have found a good home. Most abandoned dogs are very traumatised having to scavenge for food and shelter. Please remember a puppy is a friend for life not a plaything for Christmas.

Charlie Smith

Falling Flat:
An Exploration of Polio Survivors’ Falls

By: Linda Wheeler Donahue
Reprinted from The Polio Messenger, Autumn 2007,Newsletter of Polio Outreach of Connecticut with kind permission of Linda Wheeler Donohue. Available online at:
www.the-polio-outreach-of-ct.com/newsletter.htm

Falls are the leading cause of injury deaths among older adults. In fact, more than one third of adults aged 65 and older fall each year. For individuals with the late effects of polio, the risk of falling is even greater.

Polio survivors are at high risk of falling and when they do, they are more likely than others to suffer a fracture. They are likely to fall forward if they trip, and tripping is associated with drop foot, knee buckling, or slipping. In the case of lack of balance, the polio survivor is likely to fall backward.

Let’s attack this subject by dividing it into two categories: preventable falls and unpreventable falls.

Preventable Falls

Dr. Julie Silver reminds us that one of the most important things to remember about falls is that they are generally “preventable occurrences,” rather than accidents. Let’s identify ways to reduce our risk of falling.

Stand for a few seconds before walking.

With 90 percent of hip fractures in older people being caused by falls, it is important to attack the problem through prevention. Here are a few suggestions:

If you stand for a few seconds before gait initiation, you will get your bearings and your body will adjust to being upright before you take that first step.
Wear supportive footwear that fits well. When you leave the house, put on your lace-up oxfords for extra support.
Watch out for medication side-effects; ask your doctor or pharmacist to review your prescriptions to reduce interactions.
Remove hazards in your home that can lead to falls, such as throw rugs or loose tiles.
Install grab bars anywhere a sturdy support might help you. Think outside the box. Go beyond the bathroom and install grab bars in other areas as well.

It goes without saying that we should not venture out on foot in hazardous weather conditions. Also consider one of the several personal alarm systems available. Just click the button worn around the neck or wrist for immediate assistance 24/7.

We spend most of our time in our homes so it is important to increase safety and ease of use. Some suggestions are to remove items you might trip over such as newspapers, clothing, shoes, and clutter. Place non-slip mats in the bathtub and on shower floors. As we get older, we need brighter lights to see well. And very importantly, make sure all stairways have sturdy handrails and sufficient lighting.

Unavoidable Falls

Polio musculoskeletal problems such as weakness and loss of balance are major reasons why unavoidable falls happen. On a personal note, when I was still walking, many of my falls occurred as I was pivoting. I remember standing at a check-out counter in a pet store, cane in hand. The clerk came up behind me, “All set?” she asked. I turned around slightly to look at her, and as I began to pivot, I went crashing to the floor, fracturing a bone.

With other falls, my body collapsed with no warning. I went straight down with force, always landing on my left leg which was always very weak. Once I began to fall, there was nothing, not a thing, I could do to stop or cushion the fall.

My fall from grace goes something like this: Crash. Bang. Splat. I didn’t tumble; I crumbled.

After sustaining four serious fractures due to falls, my orthopedic physician gave me a good dressing-down. In this scolding he began by saying my cane was “a joke”, in that it did not give sufficient support. Then he said it was time to cease walking and begin using a wheelchair, if not, my next fracture might not heal.

Life has been much better since I made that major transition to wheels.

The bio-mechanics of polio-weakened muscles makes us prime candidates to trip and fall. My fall pattern was similar to a building demolition. First collapse; then crumble; and finally land there flattened in the dust. Your fall blueprint may be different, just as our gait patterns are diverse.

Polio weakness characteristically worsens with increased activity and is most prominent at the end of the day. Toward nightfall, snuggle into that comfy recliner; curl up and relax knowing you are not about to take a fall.

In conclusion, falls with resultant injuries are a significant issue for individuals with the late effects of polio. It is vitally important to do all we can to fine-tune our environment to reduce preventable falls. And unavoidable falls need not mean there is no hope.

Using assistive devices such as bracing and wheelchairs should be considered pre-emptive strikes. Pacing activity with frequent rest breaks is another preventative measure.

I wish you all a fall-free future!
Resources are available on request.

When is a Panic Button not a Panic Button?

What is the difference between a Panic Button and a MediAlert Button?

If you have a MediAlert, the service provider (usually Eircom Phonewatch) will ask for three phone numbers of people who would be able to go to your assistance in an emergency. A Panic Button on the other hand is directly connected to the Security Firm who installed it and from there to the Garda Station

When your MediAlert goes off, the first thing that happens is that you will receive a phonecall within two minutes to see if you are alright. If there is no reply to the phone, the service provider (usually Eircom Phonewatch) will then contact the first person on your phone list, and so on until they reach someone who can go to your assistance. If none of these three people are contactable, then they will call an ambulance. Sometimes your MediAlert can go off by accident (I know someone whose cat set it off by pressing the red button on the main console!). If this happens, don’t panic, when the phone rings, just answer it and say that you are OK. The person at the other end of the phone is always very nice! It is recommended that you do not wear the MediAlert around your neck at night, because you may set it off by mistake. Leave it close to hand on your bedside locker.

It is a good idea that from time to time you take a few minutes to check that your battery is charged up. First, press the red button on the main console and when your phone rings tell them that you want to check the battery on your MediAlert. Then hang up and press the button and when the phone rings again you can tell them that all is OK. Recently, when I was in the house on my own for a few days, I wore my MediAlert all the time, only to find out later that the battery was dead! That wouldn’t have been much good if I had needed assistance!

It is more than likely that elderly people or people with disabilities would have a MediAlert rather than a Panic Button. And OK, I know that it is quite an ugly thing to wear around your neck, and that you would much rather be sporting a diamond necklace, but it can be hidden inside your underwear, and is so important that you are safe when you are home alone – so be sensible and wear the stupid thing, don’t use it as an ornament on your dressing table, or worse still, lose it conveniently in the bottom of your chest of drawers!

If you think you would benefit from a MediAlert, just tick the box on the PPSG Annual Questionnaire. If you receive a MediAlert from the PPSG, they will pay the first year’s rental, but after that you have to make the payments yourself. This can be done by direct debit from your bank account per month – it is very reasonable at a cost of about €10 per month and that includes an annual maintenance check and battery replacement.

Our new Outreach Worker

Photo of Margaret Mc Carthy My name is Margaret McCarthy and I started working with the PPSG as Outreach Worker at the end of October 2007. My background is in the social science. I studied at UCD and obtained an M.Soc. Sc. through action research at the Psoriasis Centre at Hume Street Hospital, Dublin. My career to date has spanned research, journalism and information. I also have a great deal of experience in the disability field with organisations that included Barretstown Kids’ Camp, Enable Ireland and the Health Research Board. Life as they say is a circular affair. My life has taken me from a childhood by the sea to where I now live, again by the sea but on a different seaboard. My career has changed from academic to fieldwork and back again and back and forth. I am very excited to be working with the PPSG in this capacity.

The Post Polio Support Group is confident that this project will reveal much unmet need within the north Dublin area. It will assist Polio Survivors and their carers to access the services they require to live independently. It will facilitate the Group in developing a better kind of support to Polio Survivors, and their carers in their homes and communities throughout the remainder of the country.

Southern Region News

Photo of Terry, Evelyn and Anne at the Annual Cork Dinner Inevitably it rained again for the third consecutive outing. ‘It must be the post polio day out,’ my husband Vince joked, as we made our way to the Vienna Woods Hotel in Cork for the Christmas dinner on Sunday 18th November. I couldn’t disagree. Rain seemed to pursue us whenever and wherever we went. But we weren’t going to let mere weather dishearten us.

It seemed a little early for Christmas Dinner. Surely they wouldn’t have the decorations up yet? I knew they would help greatly with the Christmas spirit and cheer. But I need not have worried one little bit.

Because there was a large group of us - despite the polio we in Cork do get out and about when the opportunity presents itself - the hotel provided us with the ballroom for our event. It was needed too, as there were at least seventy persons in attendance.

Photo of Nora, Michelle and Donal at the Annual Cork Dinner The room was spectacular. A huge, lighted Christmas tree stood just inside the door to welcome us with festive cheer. The tables were placed around a gleaming polished dance floor. All the tables were decorated in red and white, and in the centre of each stood a small posy of flowers. The chairs were decked out in red covers, and the excess material trailing down the back of each chair was fashioned into a Santa hat complete with white tassel. I joked that everyone would have to dance, now that we had a dance floor just begging for dancers. We met all our usual friends there, and after an exchange of greeting, seated ourselves ready for the meal. This was served with great efficiency by the excellent hotel staff. There was the usual Christmas fare of turkey and ham, and for those who wished to sample something less festive, there was a choice of roast beef and salmon. After that we were served a selection of delicious desserts. Then we had tea or coffee and a drink of our choice.

Photo of Faith and Ellen at the Annual Cork Dinner Once we had eaten, we had the raffle. This was conducted in a very democratic fashion. Each table had their own envelope containing the names of the members at that table. Each envelope was drawn and then a name from the envelope. Ray won at our table, and a member at each of the other tables also won. This meant that no table was left out. A number of prizes remained and they were now raffled.

Evelyn now spoke briefly and eloquently as usual. Then a gentleman spoke briefly about a company supplying various services like holidays, I.T. and health services for polio survivors and indeed for those with a lack of mobility.

After that the music began. The musician was excellent with a very large repertoire and he sang something for everyone. He asked for performers and Tony, who was at our table, volunteered. He played the harmonica and the haunting music filled the hall. He played a favourite tune for Terry, Evelyn’s husband, who was celebrating his birthday that day and we all joined in a chorus of Happy Birthday.

Even though I had joked earlier about dancing, Tony seemed to have the same sense of humour. He started to play The Siege of Ennis, and asked for at least eight volunteers to get up and dance. I waited anxiously to see what would happen. But I had no need to worry. More than the required number were willing to volunteer and soon eight polio survivors took to the floor and danced the Siege of Ennis. It was a thrilling moment, and they got a tremendous round of applause.

After the dancing, singers took centre stage. Joyce, whom I mistakenly named in a previous report, now sang. Joyce won’t mind I’m sure if I say she is in her eighties, but what a voice and what a performance. Vincent sang Raglan Road, but Evelyn was hiding somewhere, and got away without singing this time. But we’ll get her the next time! Between the singing and dancing, Geraldine brought us slices of birthday cake from Terry’s cake. It was surely a day for feasting.

Peggy sang beautifully, and then we had a song in which a male character seemed to hop beside the singer all along the street, into the house, up the stairs and into bed. When the character hopped in beside her, I’m sure all our minds were on the same wavelength. But the song had a great twist to it when we learned that the hopping character was a flea. The performance was terrific and was greeted with much laughter and merriment.

Alas the evening had to end. We said our goodbyes and wished each other a happy and holy Christmas and set off for home. Evelyn again had organised the perfect event and as we left even the rain had stopped.

Joan McDonnell

WHEN I’M 65 – WHAT NEXT? Part II

By John McFarlane, PhD, FWCIT, FIMS, MBIM

In the last edition of the Survivor, we looked at some of the state pensions. This time we look at the Pre-Retirement Allowance and Household Benefits Package. The Allowances and Benefits are complex so we can only give a general outline. Remember if you think you may qualify – CLAIM. These Allowances, Pensions and Benefits are not charity – if you qualify, they are your right under law. If you are turned down – APPEAL and ask for a full review with reasons in writing. A large number of claims initially rejected go through on appeal!

The Department of Social and Family Affairs, An Roinn Gnothaí Sóisialacha agus Teaghlaigh, has introduced a LoCall Number 1890 500 000 for their Sligo office. You can phone there for leaflets and applications forms, or look up the Department’s web site at www.welfare.ie. Alternatively, any Citizens’ Information Bureau should be able to assist.

PRE-RETIREMENT ALLOWANCE:

The Pre-Retirement Allowance was originally designed for those aged 55 or more who retired early from the work place. However, from the 4th July 2007, the allowance was discontinued; but if you were already in receipt of Pre-Retirement Allowance on that date, it continues as long the conditions for payment are still satisfied.

Claimants who are in receipt of Pre Retirement Allowance and have a break of up to 52 weeks in their claim may have their entitlement reinstated. Any such break of up to 52 weeks is disregarded for the purposes of linking to a previous Pre Retirement Allowance.

There is an exception to the 52 week linking rule. Those people who were in receipt of Full Rate Carer’s Allowance for more than 52 weeks may make a repeat claim for Pre Retirement Allowance. The claim for Pre Retirement Allowance must be made immediately following the Full Rate Carer’s Allowance i.e. there must be no break between the Full Rate Carer’s Allowance and the repeat Pre Retirement Allowance Claim. So it is only those who were in receipt of Pre Retirement Allowance prior to Full Rate Carer’s Allowance will benefit from the exception.

Prior to the 4th July 2007 persons who were retired from the workforce were allowed ‘to sign’ for Pre Retirement Credits in order to keep their PRSI record updated. This facility is no longer available to retired persons as the Pre Retirement Allowance Scheme is abolished.

Persons who retire early may become a voluntary contributor, if they meet certain conditions. Voluntary contributions can help maintain or improve a person’s pension entitlements.

HOUSEHOLD BENEFITS PACKAGE:

Three basic components make up the Package.

Allowance 1 - Electricity Allowance or Natural Gas Allowance or Group Account Allowance or Bottled Gas Refill Allowance

The Electricity or Natural Gas Allowance is made up of four different options. If you have an electricity and natural gas supply, you must select the Electricity Allowance or Natural Gas Allowance. The Group Account Allowance is only available if you have an electricity slot meter or if the registered consumer of electricity is a landlord. The Bottled Gas Refill Allowance is only available to you if you do not have an electricity or natural gas supply.

a. Electricity Allowance
The Electricity Allowance covers normal standing charges and up to 2,400 units of electricity each year.

b. Natural Gas Allowance
The Natural Gas Allowance is an alternative to the Electricity Allowance if your home is connected to a natural gas supply. It covers normal standing or supply charges and a certain amount of natural gas kilowatt hours each year. The amount varies depending on the tariff. You may get this allowance if you are a gascard customer.

c. Group Account Allowance
If you live in self-contained accommodation (a flat or an apartment) and you have an electricity slot meter or the registered consumer of electricity at your address is a landlord, you may qualify for a Group Account Allowance. It is a monthly payment paid to your nominated financial account or post office.

d. Bottled Gas Refill Allowance
If your home is not connected to an electricity or natural gas supply but you otherwise satisfy the conditions of the scheme, you may get the Bottled Gas Refill Allowance. It is a monthly payment paid to your nominated financial account or post office.

ALLOWANCE 2 - TELEPHONE ALLOWANCE

The Telephone Allowance scheme provides a payment towards your telephone bill. The value of the allowance is currently €24.70 per month.

The telephone allowance may be paid in respect of either a landline (credit will be applied to your bill) or a mobile phone (your allowance will be paid monthly to your nominated financial institution or post office).

ALLOWANCE 3 - FREE TELEVISION LICENCE

Once you qualify for the Household Benefits Package, you may get a Free Television Licence from the next renewal date of your television licence (equivalent value of €160 per annum from 1 January 2008).

YOU MAY QUALIFY FOR THE HOUSEHOLD BENEFITS PACKAGE IF:

you are aged 70 or over, or
you are getting a Carer's Allowance, or
you are caring for a person who gets Prescribed Relative's Allowance or Constant Attendance Allowance, or
you are under age 70, are getting a qualifying payment (see below) and live alone or only with certain excepted people (see below), or
you are aged between 66 and 69, satisfy a means test and live alone or only with certain excepted people (see below).

As well as the above conditions, you must also satisfy the three conditions below.

You must be permanently living (that is, year-round) at the address to which you wish the allowances to be applied. In general, the allowances do not apply if you live in a Nursing or Retirement Home if the accommodation is not fully self-contained. However, if you are aged 70 or over and you live in such a Nursing or Retirement Home and have your own telephone account, you may get a Telephone Allowance,
You must be the only person in your household who gets the allowances.
You must be the registered consumer of electricity or gas if you are applying for Electricity or Natural Gas Allowance and the registered telephone account holder if you are applying for the Telephone Allowance.

QUALIFYING PAYMENTS IF YOU ARE AGED BETWEEN 66 AND 70

State Pension (Contributory) / (Transition)
State Pension (Non-Contributory)
Blind Pension
Widow's or Widower's Contributory or Non-Contributory Pension
Invalidity Pension
Deserted Wife's Benefit or Allowance
One-Parent Family Payment
Prisoner's Wife's Allowance
An ordinary Garda Widow’s Pension from the Department of Justice, Equality and Law Reform
An equivalent Social Security pension or benefit from a country covered by EC Regulations, or from a country with which Ireland has a Bilateral Social Security Agreement

QUALIFYING PAYMENTS FOR PERSONS AGED UNDER 66

Invalidity Pension
Blind Pension
Incapacity Supplement or Workmen’s Compensation with Disablement Pension (for at least 12 months)
Disability Allowance
an equivalent Social Security Pension or Benefit from a country covered by EC Regulations, or from a country with which Ireland has a Bilateral Social Security Agreement for at least 12 months.

LIST OF EXCEPTED PEOPLE:

In certain cases (see above), you may live with the following people and still qualify:

a qualified adult. - your spouse or partner is a qualified adult if you are getting an increase for them with your social welfare payment or
you would receive an increase for a Qualified Adult for them with your payment but for the fact that they are getting a social welfare payment in their own right.
a dependent child(ren) under age 18 or up to age 22 if in full-time education (you must supply a certificate from the school or college for any child aged 18 or over)
a person who is so incapacitated that they need constant care and attention for at least 12 months (you may need to supply medical certification).
a person who would qualify for the allowances in their own right (for example, a person getting an State Pension)
a person who is providing you, or someone else in your household, with constant care and attention, if you or that other person in the household is so incapacitated that you or they need constant care and attention for at least 12 months (you may need to supply medical certification). If the person is in employment for more than 15 hours per week or they are getting Jobseeker's Benefit or Assistance they cannot be accepted as providing constant full-time care and attention.

WHAT HAPPENS IF I AM WIDOWED AND AGED 60 TO 65?

If you are a widow or widower, aged 60 to 65 inclusive, and your late spouse was getting any Household Benefits and before their death and you were permanently living together, you may now apply, in your own right, for the allowances in the Household Benefits Package.

You must get one of the following payments and satisfy the qualifying conditions above:

State Pension (Transition) (payable at age 65)
Widow's or Widower's Contributory Pension
Widow's or Widower's Non-Contributory Pension
One-Parent Family Payment (Widows or Widowers)
Widow's or Widower's Pension under the Occupational Injuries Benefits Scheme
or
An equivalent social security pension or benefit from a country covered by EC Regulations or from a country with which Ireland has a Bilateral Social Security Agreement or
An ordinary Garda Widow’s Pension from the Department of Justice, Equality and Law Reform.

DO SPECIAL CONDITIONS APPLY IF I AM GETTING INVALIDITY PENSION, DISABILITY ALLOWANCE OR BLIND PENSION?

If you are getting Invalidity Pension, Disability Allowance or Blind Pension and you are getting any of the allowance(s) under the Household Benefits Package, you may keep the allowance(s) if you transfer to certain other payments. You may not keep the allowance(s) if you transfer to Jobseeker’s Benefit or Assistance, Disability Benefit, Pre-Retirement Allowance, One-Parent Family Payment or Carer’s Benefit.

(In the next issue we will look at the Carer’s allowance)

Letters to the Editor

Dear All
We cannot thank the PPSG enough for the respite care grant that enabled us to go on our first holiday trip in 25 years. We went to a spa for 5 days and enjoyed the luxury of it to the full. This can only be recommended, especially for people with polio. They had all the facilities, even a hoist to lift you into the pool. The water was pumped up from natural springs; bubbly, salty and 32 degrees warm. It was very soothing to the whole system and one could feel and see the detoxification. There were all sorts of underwater jets and currents and artificial waterfalls to give a massage in a safe way, handrails everywhere, seats and beds so to speak in the water, so you could glide into them. It was sheer joy and we laughed a lot. Seeing my husband so unreservedly enjoying himself again made me very happy. Coming home everyone remarked on how well we looked. So our most heartfelt thanks to you all for a wonderful experience!
Yours sincerely
Ulla Stumpf

This is just one of the many letters received from members who have availed of a respite break by ticking that box on the Annual Questionnaire. Editor

Hello Everybody
Just a little note to tell you Cappagh Hospital is celebrating 100 of caring for people. Monica Hurson is collecting memories. Any body interested?
Keep warm.
Love,
Margaret Heath

Dear Paula
In your Summer edition of THE SURVIVOR I was delighted to read the article on Shoulder Concerns. As a Survivor who was left with weakness of the right shoulder and arm, I would like to tell you about some of the difficulties I encounter daily:

1. Washing my hair is a great difficulty

2. Buying clothes is very difficult as shop assistants no longer help and changing rooms are very small and you feel under great pressure if there is a queue.

3. Because of my arm weakness I have difficulty getting of some clothes so I have to buy a larger size which can make you look very untidy.

4. Most public buildings have large heavy doors marked ‘pull’ and ‘push’. When I enter these buildings I very often feel I have left my shoulder behind on the door!

5. Supermarket shelves can be packed so tightly I often knock half the goods off by picking from the middle of the shelf.

These are only a few of the daily difficulties encountered by me, but having lived with shoulder and arm weakness since early childhood, I have learned to live with the limitations, so it must be very difficult for Survivors who are experiencing shoulder problems for the first time.

Yours sincerely
Phil O’Reilly

I am sure many of our members experience such difficulties as Phil has so eloquently put in her letter. If you have any tips to deal with these situations, please let us know. Editor

World Polio Day in Brussels

Photo of Post Polio Support Group Members at the European Parliament I travelled with 6 other PPSG members representing Ireland at World Polio Day in Brussels October 17th. What an experience that was! It was a wonderful learning opportunity. I took part in the organised demonstration outside the Parliament on Tuesday 16th. There were approximately 40 of us. This was to draw attention to the needs of people with polio and post polio syndrome in Europe. We travelled to a meeting held in the European Parliament on the morning of Wednesday 17th. In attendance were some MEPs and health professionals. I must acknowledge how well this trip was organised and co-ordinated and thanks to Hugh Hamilton, Eamon Farrell and Daniel Peltzer, co-ordinator of the Brussels trip for looking after all of us. This visit saw the launch of the European Polio Union whose chairperson is Johan Bijttebier from Antwerp, Belgium. Met Els Symons from Holland, Louisa from Italy, Lola Coriantes from Spain, Brigite from France, Graham Ball and Helen Bailey of British Polio Union. Its wonderful to be part of the European Polio Union as we all have so much to offer each other.
Bridie McMahon

POST POLIO SUPPORT GROUP

2008 Annual General Meeting and Conference

Date: 19th April 2008
Venue: Radisson SAS Hotel, Ballincar Road, Rosses Point, Sligo.

Plans are moving apace for the organisation of this year’s AGM and Conference. Following on the concerns of our members re the whole area of callipers and orthotics in general, we are delighted to have Dave Allen as one of our speakers at the Conference. There will also be time to ask questions on this topic, which is a very important one for Polio survivors. We also have Deirdre Fitzgerald from Beaumont to tell us about her research to date and her plans for the future. As many of our members have taken part in the ongoing research, this will be of interest everyone. Finally we will have a surprise speaker who will have you falling out of your seats (nothing to do with the article Falling Flat, see page 14).

We are delighted with the response to “Creativity and Us” with more than 40 expressions of interest to date. If you would like to submit something for the exhibition, there is still time to do so. Please ask the office to send you an application form, which will need to be returned before the end of February.

A very special weekend rate has been negotiated with the hotel, and this along with a subsidy from the PPSG, will make this a very good value break for our members. So, come along and make a weekend out of it – we have a table quiz planned for Friday night and some great entertainment on the Saturday night. So if you can come, please fill out the accommodation form enclosed with this newsletter and post it back to the PPSG office in pre-paid envelope provided.

Notification of the AGM and related documents will be sent out to all members shortly.

Are you in this photo?

Photo of the Confirmation Class of 1958 from Coole Hospital,

This photo is the Confirmation Class of 1958 from Coole Hospital, Co Westmeath. Do you recognise yourself or anyone else? We will publish any response to this photo in the next issue. Thanks to Jimmy Keenahan for lending us the photo. If you have any photos of your hospital days, let us have them and we will put them in the next issue, and you never know, you might meet up with someone you haven’t seen for years!

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.