You are here: Home > Publications > The Survivor Newsletter > Autumn 2006

The Survivor Newsletter: Autumn 2006

Post Polio Support Group at the Dáil

Post Polio Support Group Talks to the Joint Committee on Social and Family Affairs, Dáil Éireann

Tuesday 3rd October will be long remembered as the day of statements about loans and gifts but, before the big debate, the Post Polio Support Group had its own drama with Joan Bradley making a presentation to a committee of TDs and Senators highlighting the problems of Polio Survivors. The following comments give a flavour of the meeting.

Ms Joan Bradley, Deputy Chairperson, Post Polio Support Group

The focus of the Post Polio Support Group has been, since its foundation, to assist polio survivors to live with as much independence and dignity as possible. In this regard, we have worked with Departments and their agencies to address the medical, housing and other needs of polio survivors. This arises because of the extra cost of living associated with their disabilities. We are heartened that a cost of disability payment is being discussed and that the Minister for Finance is being encouraged to introduce such a payment in the forthcoming budget.

We are concerned about the social isolation of polio survivors and its link to lack of mobility. We know that the cost of travel, where appropriate transport is available, militates against taking up employment. We believe that access to the free travel scheme would greatly assist polio survivors in playing their full part as citizens of this State. We are deeply concerned about our members as they face the winter as the cost of oil, gas and electricity soars. Increased intolerance to cold is a symptom of the late effects of polio and as such access to the free fuel scheme would greatly assist our members to meet their heating needs.

We have come here today to ask that this committee act as an advocate on behalf of polio survivors. I respectfully request that it ask the Department of Social and Family Affairs if it has any understanding of the ongoing serious hardship being endured by our members.

The committee might also ask what practical and effective steps that Department will take to alleviate our members’ difficulties. The State has not sufficiently supported people who have the late effects of polio.

Deputy Finneran, Fianna Fáil, Longford-Roscommon: I thank the Chairman and the committee secretariat for meeting the Post Polio Support Group. This came about when constituents of mine were refused travel passes even though they suffered from polio in the 1960s and, in many cases, had to give up their employment on account of the debilitating effects. None of the free schemes are available to them on the basis of having had that condition. They must qualify under some other heading. Today is a watershed. I hope this committee will resolve the issue. I call on the Government to start by providing travel passes to all of these people. I am convinced this group has been totally neglected by the State.

Deputy Stanton, Fine Gael, Cork-East: I agree with the group on all of the issues raised. There is no justification for not meeting its needs. Does the rate of progression of the condition vary from one individual to another€ The group’s excellent report on the late effects of polio states between 3,000 and 4,200 survivors have developed the condition or will in the near future. I take it from the presentation that the condition has not been recognised as a long-term illness. That would be an issue for the Joint Committee on Health and Children rather than this committee.

Mr. Hugh Hamilton, Chairperson, Post Polio Support Group

The number of polio survivors is in the region of 7,000. It is acknowledged internationally that approximately 60% of these may suffer the late effects of polio. This is somewhere between 3,000 and 4,000 in Ireland.

Deputy Finneran, Fianna Fáil, Longford-Roscommon: I hope the Departments of Finance and Social and Family Affairs listen to the call of the delegation. Given the financial position in which the State finds itself, it would be negligent, as it has been for the past 40 years, not to respond in a positive way to polio victims. The most basic aspect to consider is to ensure people have the opportunity to travel. I know many people affected had to give up work at an early stage because they were not in a position to travel. Some of them cannot now drive a car. Public transport and a free travel pass are a must for them.

Those affected should be entitled to all free schemes and included in the long-term illness provisions. I am glad this committee has given the delegation an opportunity to be heard. I hope we will keep it on our agenda and pursue it, particularly during the next two months and until consideration of the Finance Bill 2007. This is the most genuine case I have come across during my 16 or 17 years in the Oireachtas. It shows neglect not only by the present Government but by every Government since the 1960s.

Deputy Callanan, Fianna Fáil, Galway East: I compliment Deputy Finneran for making this case and the Chairman for allowing it. The committee is in full support of the request because members know several polio victims. The group is not asking for much and the Minister should grant it.

Senator Terry, Fine Gael: I thank the witnesses for coming before us and presenting their case. I support them and will do whatever I can to progress the matter. Ms Bradley mentioned she had to reduce her working hours. If someone must give up his or her job because of the onset of the late effects of polio, is he or she entitled to social welfare benefits€ Does he or she qualify for long-term illness benefits in that situation€ Is someone in that situation regarded the same as anyone else who got sick, such as a cancer sufferer, and had to give up work€

Chairman, Deputy Willie Penrose, Labour, Westmeath:   That was a very useful presentation. I commend the delegates for their clarity and succinctness. The committee will make a formal recommendation to the Minister for Social and Family Affairs urging him to:

AND SO SAY ALL THE MEMBERS OF THE POST POLIO SUPPORT GROUP

Chairman’s Update

As Jim Costello mentioned in our last copy of the Survivor, he has retired as chairman and I have been elected by the board in his place. It is virtually an impossible task to follow a person such as Jim, with all his dynamism, enthusiasm and boundless energy which he put into the position, working throughout the day, seven days a week, totally dedicated to improving the welfare of Polio survivors. However, I will do my best and would ask all members to be patient – but please no comparisons!

Fortunately, although Joan has retired as secretary, she is now deputy chairperson, which is tremendous for me and Paula has replaced Joan as secretary. Jim thankfully has agreed to be on the executive committee, so I assure you that both Jim and Joan will still always be in the front line of all that is happening in the group.

In the last couple of months, it was reluctantly decided that the room in the Carmichael Centre could no longer accommodate our three person staff. As of last August we have fortunately found new offices in the Capel Building, Mary’s Abbey, which is just off Capel Street, beside the LUAS. We have now moved to Unit 319, Capel Building, Mary’s Abbey, Dublin 7.

Our membership continues to expand and it is anticipated that the end of the year will show an increase for 2006 of 15%. This is good news and is a direct result of media coverage which has been received in the last 12-24 months and particularly during the AGM in Cork this year. It does of course mean that there are more people availing of services and aids and appliances, which we provide and fortunately with our increased executive staff of Eamonn, Karen and Ursula, we are able to fulfil a large amount of the requests.

Enclosed in this issue of the Survivor please find notice of an EGM to be held on 30th November 2006 at Unit 319 Capel Building, Mary’s Abbey, Dublin 7 at 11.00am, to alter our Articles of Association concerning the election of new directors. At the moment, a director can be proposed 3 days before the AGM, which does not give the board the oppurtunity of circulating their details to all our members. We will be seeking that it should be changed so that any new director must be proposed 5 weeks before the AGM. All members are welcome to attend the EGM, but if you are unable to come please use your proxy vote.

Hugh Hamilton,
Chairman

PPSG was able to offer a small grant for chiropody to those who requested it this year. We hope that all those with medical cards have applied for the three or four free treatments to which they are entitled.

Polio Stories Project

The Polio Stories Project is nearing completion, thanks to all the participants and our editor, Nuala Harnett. We had hoped to launch the book in Cork at the end of the year, but due to financial constraints – and a certain amount of commonsense when looking at the logistics of this situation – we now hope to launch the book at the AGM in May 2007. The book will be called Polio and Us.

Coming to terms with Post-polio Syndrome.

Call for study volunteers

St Thomas’ Hospital London are currently looking for people who have been diagnosed with Post-polio Syndrome by a health professional.  Taking part will involve filling out 3 questionnaires over a period of 6 months.  No travel to London is necessary.

(You are not eligible if you have previously attended, or will be attending, the PPS rehabilitation programme at the Lane-Fox Unit, St Thomas’ Hospital in London).

If you are interested in learning more about this study, please contact Vivian Auyeung, Dept. of Psychology, King’s College, London SE1 9RT, UK.

Tel: 0044 207 848 6790 or Email: vivian.auyeung@kcl.ac.uk
Post Polio Support Group, Ireland. Supporting PPS research.

From the Editor

Hello all, Autumn is here again and the newsletter is bursting with the harvest of happenings in the Post Polio Support Group over the last few months. We have some great articles for you in this issue, including information on Sleep Apnoea (Page 12). We have a great report of the goings-on in the Southern region with some interesting photos (Page 5), and David Bray has given us permission to print his Polio Story (Page 15), just to give you a 'taster' of our book Polio And Us, which will be launched at the AGM, May 2007.

Our new offices are really lovely; do drop in if you are passing. Please note the new address details and phone numbers on page 2. You will note that we have a very nice new logo (Page 1), and finally, just to let you know that the next issue of The Survivor will have a new ‘design concept’ so be prepared!

Thanks to Karen and Shane for their help in getting the newsletter to publication.

If you have any items you think would be of interest to our readers, please send them to me, and I will do my best to print them in the next issue.

Enough from me, have a good read!
Paula Lahiff
Editor

Fundraising

Raffle news

The Prize-winners of the PPSG Raffle 2006, which took place on 3rd October, at the Esplanade Hotel, Bray, Co. Wicklow, are:
1st Prize: 2 nights for two at the Clarion Hotel and Spa, Cork.
Maureen O’Sullivan, Carrigaline, Cork.
2nd Prize: 4 green fees at Mount Juliet Golf Club, Co. Kilkenny.
M. Nolan, Dublin 7.
3rd Prize:  Voucher for €250 and treatment for health spa at Deerpark Hotel, Howth, Co. Dublin.
Brenda Cooney, Rosculligan, Cavan.
4th Prize: Voucher for €250.
Ms. Fox, St. Fintan’s High School, Dublin 13.
5th Prize: A case of wine.
Julia Robertson, Kells, Co. Meath.
6th Prize: Dinner for two at the Ballymacscanlon Hotel, Dundalk, Co. Louth.
Jenny Barry, Ennis, Co Clare.
The Fundraising Committee would like to take this opportunity to thank the above sponsors of these excellent prizes, to our members, their families and friends for generously supporting the raffle, which raised almost €8500 and to extend our congratulations to the prize-winners.

Marathon News

To date the Dublin Flora Women’s Mini Marathon, held last June, has raised sponsorship of over €14,000. Your generosity is much appreciated. It is not too late to send outstanding sponsorship monies or donations (no matter how small) to the Office (to their new address). Enquiries to Anne Burns, phone 01 4534150, email: boyneabu@eircom.net

The Evening Echo 25th Women’s Mini Marathon, Cork, in association with Voluntary Health Insurance, took place on 24th September. The ever energetic Evelyn Wainwright with her tireless team, including Sunny Osburn, Shiela O’Sullivan, Noreen and Finbar Bruen, Geraldine Mooney, Peggy Brennan and Noel Magnier put in marvellous preparatory work to make this a successful fundraising event for the PPSG, including "Recruitment Days" at the Lough, Cork City, which received welcome coverage with a photograph in the "Evening Echo". A hearty thank-you to all involved. After the monsoon flash flooding of the previous day, that Sunday turned out to have a marvellous Mediterranean feel with sensational warmth and sunshine.

According to Evelyn all our supporters there looked great in the new red PPSG t-shirts and fleece jackets, while other supporters appeared sporting the blue t-shirt previously in use. A great day was rounded off with welcome refreshments enjoyed at Jurys Inn, whose staff treated our Group with utmost courtesy. Participants in the marathon for the PPSG were presented with special parchment scrolls to mark 2006 being the 50th anniversary of the Polio epidemic in Cork. If you know of anyone who did not yet get their scroll, do not hesitate to let Evelyn know (see her contact details below), who will be only to willing to get it to them. Thanks are due to Tools for Living for lending us scooters.

Even if you were not in a position to be involved in the marathon for the PPSG you can still use the sponsorship card issued to members in the Cork/Kerry area. Sponsorship raised or donations (no matter how small) can be sent to the Office (new address). Enquiries to Evelyn Wainwright phone/fax 021 4847313, mobile 086 8829267, email: evelyn99911@hotmail.com

The Limerick Women’s Mini Marathon, sponsored by the "Irish Examiner", in association with Limerick 95FM, took place on Sunday 8 October at 2.00pm, news on that to follow. Enquiries to Tom Clifford mobile no. 087 2259083 email: tomclifford@eircom.net.

Sponsorship cards are available for the Adidas Dublin Marathon which takes place on Bank holiday Monday 30 October at 9.00am. Enquiries to Anne Burns.

Funds raised for the PPSG in recent months through other local events, including the Jumble Sale organised by Patricia Milburn in Westmeath and a sponsored walk by Carmel Gibney’s brothers and friends in the Bray area are much appreciated.

Collections

Barbara McDonagh with PPSG members and friends, and in sub tropical temperatures, had a very successful cash collection on the streets of Galway City on 14 July.

Successful cash collections were also organised by Evelyn Wainwright with PPSG members and friends in Ballincollig Shopping Centre, Cork on 17 & 18 August. The PPSG are grateful to the management and staff of the shopping centre for facilitating the collection and for the courtesy shown to our collectors.

The Fundraising Committee wish to thank all who were involved with the collections.

In Dublin, it is hoped to have a cash collection at Superquinn, Sutton Shopping Centre on Thursday 2 November. If you, a family member or friend are in a position to volunteer some time to help with this collection, (even for about an hour), perhaps you could contact Philo Mullaney, phone 01 8321629, mobile 087 2269980, or by email: philomullaney@hotmail.com

It is hoped that members will not be too disappointed it has been decided not to produce PPSG Christmas cards for sale this year. This is due to increased costs of production and postal charges.

Funds raised go directly for the benefit of our members, principally towards grants for bathroom adaptations. Please contact any member of the Fundraising Committee or the Office if you have any new ideas for fundraising and thank you all again for your generous support to date.

Athlone/Midlands group

Convenor: Sean Mulligan
Mobile: 087 2053821
Venue: Creggan Court Hotel
Area: Westmeath, Roscommon
Meets twice yearly.
The Annual Dinner took place. It was a very successful event with 21 people attending. It was nice to see the younger generation there as well. We had some great country music after the meal, and our members were not shy in giving us a bar of a song! Photos in the next issue.

If you live in this area and would like to attend these 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.
It was decided to have the end of year Dinner on 5 December again at the Esplanade Hotel, Bray. If you would like to attend, please contact Belinda Redmond as soon as possible.
If you live in this area and would like to attend these 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
If you live in this area and would like to attend these 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

Held an Outreach meeting in Ballina in September to facilitate our members from Mayo and Sligo. It was well attended and a good night was had by all. The Annual Dinner will take place on 24th November at the Greyhound Track, Galway. If you would like to attend please let Bridie McMahon or Barbara McDonagh know as soon as possible.

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

Enniscorthy group

Convenor: Ann O’Kelly Guerin
Tel: 053 9132633 or Povl Thim053 9421857
Email: aguerin914@hotmail.com
Venue: Riverside Hotel, Enniscorthy
Areas: South Wicklow, Wexford, Waterford.
Meetings: First Monday of every month
If you live in this area and would like to attend these meetings, please give Ann or Povl a call.

Newbridge group

Convenor: Paddy Moyles
Tel: 059 9141283
Venue: The Keadeen Hotel, Newbridge
Areas: Carlow Kildare.
Meetings: Meets quarterly.
Next Meeting Date:
24th October 2006
If you live in this area and would like to attend these meetings, please give Paddy a call.

Portlaoise group

Convenor: Paddy Fitzpatrick
Tel: 0505 46738
Mobile: 086 396 1131
Venue: Heritage Hotel, Portlaoise
Areas: Offaly, Laois, Kilkenny.
Meetings: First Tuesday of every second month
Meeting Dates:
7th November 2006 (Venue to be confirmed)
A dinner has been arranged for 23 November at the Bridge House Hotel, Tullamore. If you would like to attend, please let Paddy Fitzpatrick know as soon as possible.
If you live in this area and would like to attend these meetings, please give Paddy a call.

Letterkenny Group

Convenor: John Mangan
Tel: 074 9137465
Venue: Clanree Hotel, Letterkenny
Area: Donegal, Derry
Meetings: The group may meet in the New Year. You are welcome to contact John Mangan if you have any ideas for a meeting.
If you wish to contact John Mangan, please do so at the phone number above.

Note: The following article was taken from the Muscular Dystrophy Newsletter June 06

GP Medical Cards

It has just been announced on 26th June, that the basic income guidelines have been increased, meaning that more people will be entitled to the GP Visit Card. This card entitles you to free visits to your GP, but not to free medication.

According to the Department of Health, since the change the GP Visit Card should be available to the following people with typical outgoings and the following income after tax and PRSI:

The above income examples are before outgoings such as mortgage and rent costs, childcare costs, and travel to work costs, are taken into account when calculating income thresholds for a GP Visit Card.

One application form is used for both Medical Cards and the GP Visit Card. The HSE will assess you for a Medical Card in the first instance, and if your income exceeds guidelines you will then be assessed for the GP Visit Card.

To get more information or to apply for the card, phone the HSE infoline on 1850 24 1850, contact your local Health Office or check www.hse.ie/en/GPVisitCards

Modernising the logo

Every member should, by now, have received a postcard giving the contact details for the new offices for the Post Polio Support Group. The front of this card contained an, as yet, unfamiliar design. In fact this card launched the new Group logo.

We worked with an expert designer to develop it, an interesting experience in itself. We showed him what we were using at the moment, the "Conquering the Polio Legacy" leaflet, the current logo and "The Survivor". He told us that the strongest card we had was the name of the Group. He said it was a RONSEAL name – It did exactly what it said on the tin – it said what we were here to do, as a Group, to Support people experiencing Post Polio syndrome. He said, however, that in this day of the internet and international communication generally, we should really have the name Ireland in the logo to distinguish us from post polio support groups in other countries.

He felt that it was important to have continuation and connectivity with the older logo while presenting the clean lines more often seen in logos these days. The use of the blue colour does this in an obvious way but the ribbon is drawn also to reflect the "whole world" or "horizon" feel of the older logo.

What do you think of the new logo?

Let us know by e mail to info@ppsg.ie or drop a note to the new office at Unit 319, Capel Building, Mary’s Abbey, Dublin 7.

PLEASE remember the Post Polio Support Group in your Will, or request donations to Post Polio Support Group in lieu of funeral flowers...
All bequests will be put to very good use.

THANK YOU

 

Some Great Tips …

(Thanks to the Ring Ring Leaders for the following tips which I learned at the training weekend in Portlaoise – Editor)

Update on Ring Ring Phone project

On 15th of September, ten of us travelled to Portlaoise for a training induction weekend on the Ring Ring Phone project.

The course was facilitated by Keith Oulton, family therapist and psychologist and Brenda Heffernan, peer counsellor. We are pleased to announce that we now have eight leaders for this project and they cover the four areas of HSE West (Tom Gallery and Christina O’Connor), HSE Dublin and Mid-Leinster (Leo Dempsey and Joan Bradley), HSE South (Peggy Brennan and Muiris Ó’Criostóir) and HSE Dublin and North East (Anne Shanahan and Joseph Flynn). Leaders will undertake to phone each member in his/her group once a month and, with their permission, put them in contact with each other. Over the weekend, we looked at communication skills, listening, information giving and the various stages of a telephone call.

It made for a very interesting and thought-provoking weekend, with lots of shared experiences and tips, varying opinions and a lot of humour. The enthusiasm of the leaders’ participation deserves a special mention and they are raring to get started.

Thanks are due to all to who took part and who helped to make the weekend a huge success. A follow up session will take place in the near future.

If you are still interested in being involved in this project, please let us know.

New Offices for the Post Polio Support Group

The office in the Carmichael Centre has become inadequate for the requirements of the Group. With three fulltime staff and directors working there from time to time it was not possible to run an efficient office because of the lack of space.

The Group has rented office space in the Capel Building. We now have the capacity to do more work on behalf of Polio Survivors and we can provide opportunities from time to time to members who wish to do voluntary work to support the Group at the new office. We even have a spare desk with its own computer, now there’s posh! We have a small meeting room and our Committees can now meet at the office which streamlines everything.

The office is on the site of the former St Mary’s Abbey which gave its name to Mary St and Abbey St and also Capel St which was called after the capella or chapel. The chapter house of the abbey is the only remaining building of the site and is on view at certain times. Our office is built on the site of the abbey infirmary where the monks tended to the sick. The delivery entrance is on Little Strand Street a reminder that in those days this was the seaside and boats would sail up to the abbey with the tide.

The Capel Building is a new office block at the junction of Capel St and Mary’s Abbey beside the LUAS line between Tallaght and Connolly Station. It is between the Jervis stop and the Four Courts. The entrance is on the Mary’s Abbey side. There is no parking provided for visitors but metred parking is available around the block. The street joining Ormond Quay Upper and Mary’s Abbey, East Arran Street, often has parking available and can be accessed by car from Ormond Quay Upper. There is a Blue Badge parking space on Capel Street just after McQuillan’s Tool Shop.

We will still keep our ties with the Carmichael Centre and the wonderful people who have helped so many voluntary organizations get started. As you get bigger they let you leave and make space in the nest for a newly developing organization. Good luck to our successors!

SLEEP APNOEA

Recent studies have shown that Polio Survivors are 30% more likely to suffer from sleep apnoea than the rest of the population. The following article is summarised from the Irish Sleep Apnoea Trust Website www.isat.ie which gives lots of good information on this condition. Remember, as with all medical conditions, always follow your doctor’s advice. Editor

What is Sleep Apnoea?

A layman’s definition of Sleep Apnoea is ‘the cessation of breathing during sleep’.  When breathing stops the levels of oxygen in the blood begin to drop.  After a short time the lack of oxygen causes a reflex response.  This response forces open the airway with a loud snort, maybe gasping breaths and loud snoring.  There may also be kicking and flailing of the arms. 

There are three different types of sleep apnoea: obstructive, central and mixed.

Obstructive Sleep Apnoea

Obstructive Sleep Apnoea (OSA) is the most common.Central Sleep Apnoea and Mixed Apnoea are rare. Obstructive sleep apnea is caused by the obstruction and/or collapse of the upper airway (back of throat), usually accompanied by a reduction in blood oxygen saturation, and then an awakening (arousal) to activate breathing again.  This is called an apnoea event.

Why? There are a number of factors:

Central Sleep Apnoea

Central Sleep Apnoea is defined as a neurological condition where there is a cessation of all respiratory effort during sleep (the brain forgets to instruct the body to breathe), usually with decreases in blood oxygen saturation levels. The person is aroused from sleep by an automatic breathing reflex, so may end up getting very little sleep at all. Note that Central Sleep Apnoea, which is a neurological disorder, is very different in cause than OSA, which is a physical blockage - though the symptoms are very similar.

Mixed Apnoea

Mixed Sleep Apnoea, as the name suggests, is a combination of Obstructive and Central Sleep Apnoeas’.

How do I know if I have it?

One of the best people to help you answer this question is your spouse/partner.  People with sleep Apnoea generally have the following symptoms: -

What should I do if I think I may have sleep apnoea?

As with most medical questions, if you have any doubt, the best thing to do is see your doctor.  Unfortunately, many doctors are not very knowledgeable about sleep disorders. The ISAT website contains a list of recognised sleep centres where proper treatment is available.  A referral from your doctor will be required.  If you think that you have a sleep disorder (are aware of a number of symptoms) do not be afraid to tell your doctor that you want a referral to a sleep clinic.

Is Obstructive Sleep Apnoea dangerous and what are the effects?

Absolutely!  In rare cases, apnoea can be fatal.  Think about it!  It is something that makes you stop breathing something you consider not to be dangerous?   It has also been linked to high blood pressure and to increased chances of heart disease, stroke, and irregular heart rhythms (arrhythmias).  Unfortunately, not all of the long-term effects of untreated sleep apnoea are known, but specialists generally agree that the effects are harmful.  If nothing else, the continual lack of quality sleep can affect your life in many ways including depression, irritability, loss of memory, lack of energy, a high risk of auto and workplace accidents, and many other problems.  Medical Research indicates that people with untreated Sleep Apnoea are more likely to die ‘before their time’.

This is not something to ignore or trifle with.  While it isn’t usually immediately dangerous, don’t take it lightly.  If you think it will go away by itself - don’t - It won’t.

What treatments are available?

There are only a few effective treatments for OSA.  They fall into several categories: weight loss, surgery, dental appliances, and a breathing-assistance device.  The most popular and most effective is the latter one, the use of a device which delivers air under slight pressure to the airway by way of a nasal mask.  There are several types of positive airway pressure devices including, CPAP, Bi-level positive airway pressure, and responsive and ‘smart’ airway pressure devices.  They are all variations on Continuous Positive Airway Pressure, or CPAP.

Breathing-assistance devices
Continuous Positive Airway Pressure (CPAP)
“Nasal CPAP” is the treatment of choice for most people with obstructive and mixed apnoea.  It is the most reliable and effective treatment in most cases. Hundreds of thousands of CPAP devices are now in use treating obstructive sleep apnoea worldwide.  An added advantage with this treatment is the elimination of snoring.

It involves using a small air blower device connected via a hose to a nose mask you wear while you sleep - much like a regular oxygen mask, with straps to keep it in place.  Essentially, this devices blows air into your nose to keep your airway from collapsing and creating an obstruction by increasing the air pressure in your airways.  It isn’t as unpleasant as it sounds - most people get used to the sensation fairly quickly.

Admittedly, having to wear a face mask to bed isn’t the most attractive thing in the universe.  Most bed partners are usually happy to live with that rather than snoring! And it is infinitely preferable to the effects of apnoea, both the fatigue and the other physical effects (additional strain on the heart).  The exact results vary, but a great many people report significant changes in their lives when they start using CPAP - they feel more awake, more alive - “like a whole different person”, in some cases.

Is there anything I can do myself?

It is wiser and safer to get professional treatment.  You can use the techniques below, in consultation with your sleep specialist/doctor, while your treatment progresses.  Sleep Apnoea is a disorder and as such cannot be cured, it can however be managed efficiently.  There are several things doctors suggest you do that can greatly alleviate it:

Consult your physician for medications to treat these which will not interfere with sleep/cause congestion.

Funding the gap in the Disabled Persons Housing Grant

We are always keen to explore new ways of helping Polio Survivors.

It has once again come to our notice that some Polio Survivors have incurred considerable expense as a result of their disabilities which may be causing them severe financial hardship. This has been particularly true in cases where building work has been necessary to make homes accessible, generally, and provide accessible bathrooms, in particular. We know that the Disabled Person’s Grant (DPG) is useful but it often leaves a funding shortfall after the work is complete.

We know that some Polio Survivors can handle the shortfall but some cannot. We would like to assist people who find themselves in severe hardship. This is not as easy as it may seem, as we are constrained by systems of accountability which do not permit us to make direct payments to Polio Survivors.

We are approaching things, as follows: Firstly, the person must be prepared to apply to their Local Authority for the DPG. To speed up this process, PPSG will often contract an occupational therapist to assess the member’s needs in relation to the building work needing done. Under normal circumstances, the person has to wait until this is arranged by the local authority and HSE. The occupational therapist’s report is then submitted with the DPG application to the local authority, by the member. Hearing back from the local authority can take anything from a few months to much longer, depending on the area in which the member lives.

If the member’s application is successful, the member will need to apply for a loan from a Credit Union or similar to finance the shortfall of the DPG (this grant often covers up to 90% of the cost of the building work, leaving the member liable for the remaining 10%). The member should then complete the work and apply to PPSG for assistance to alleviate hardship.

A PPSG panel will then consider how it can assist those in debt and undergoing severe hardship as a result of costs of disability. It will have limited funds and may decide to pay none, all or part of the outstanding loan. Any payment authorised by the panel will be paid directly to the lending institution to be credited to the specified loan account.

We have spoken to quite a number of you who are currently engaged in this process and would ask you to keep us posted on any developments. Please contact the office for any new enquiries on this project.

Spiritual Corner

"Dear Soul, most lovely of created things"

In the last edition of The Survivor, we were reflecting on the real presence of Jesus within us. I was making the suggestion that one way to truly experience his presence is to focus on your body and tightly grip your body, until you become entirely conscious that Jesus is indeed within your physical frame. Now I am going to present what St. John of the Cross had to say about this reality in his book, The Spiritual Canticle.

“Dear soul, most lovely of created things, you who long so much to know where your true love is, in order to find him and be united with him: learn that you yourself are the room in which he dwells, the nook, the secret place in which he hides; for it gives you great peace and joy to realize that everything good, everything for which you hope, is to close to you that it lies within you, or rather that without it you cannot exist.” (The Spiritual Canticle 1: 7-8.)

I love that piece by St. John of the Cross. There is such a soft gentleness in it starting with that lovely phrase “Dear Soul”. Clearly John saw every single person as precious and was profoundly aware that the only reason why God lives within us is because he sees each one of us as precious and loves us in a way that is totally beyond our imagining, leading even to his death on a cross. In the eyes of God, each of us is a king or a queen, but much more than that, a friend. John the Evangelist described God in that memorable phrase, “God is love”. Why not sit down and feel the warmth of that love nestling against your own heart. Believe. Don’t just think about this. Stay there until you feel the warmth of his presence. Feel. For too long we have ignored our feelings in prayer.

Fr. Michael Golden.

My Polio Story

by David Bray

I regard myself as a very lucky man. 

It is true that at the present time I suffer from or have medication to control post polio syndrome, stroke, high cholesterol, hypertension, and diabetes, but I have led and continue to lead a very full life.

Apparently it was noticed I had difficulty starting to walk and I was diagnosed aged about one with polio-myelitis affecting my left leg, primarily my left foot and toes. Obviously at that age I knew nothing of this, and I certainly do not recall the treatment of being dunked in a salt water bath and having an electric current passed through it. Had I received this treatment through a more personal part of my anatomy I am sure the memory would have stuck with me even at that age! So this was my first piece of luck.

I do remember tripping over my left foot frequently as a young child, and having to prise out pieces of gravel from the palms of my hands and my knees. The polio had atrophied the tendons in my foot leaving the toes locked in a forward position, and I was unable to raise or lower them. This is why I tripped continually. Around about 5 or 6 years of age I had an operation to my left foot. I was told some years later that the surgeon noticed the tendon to my big toe had slight movement, so he freed it and split off two or three slivers and fastened them to the remaining toes allowing them all to move. Not very far, but enough to stop me tripping. This was by far the biggest piece of luck in my early years.

I have always loved sport, and at the various schools I attended I was lucky enough to be chosen to play football, rugby and cricket for my school houses, and even to play football for one school. However, as I got into my teens I began to get chosen less and less frequently, and this is when I realized that the physical effect of the polio was to have more effect on me in adulthood. So I decided to join the army to see if I could handle the physical demands there.

When I attended for my medical, the doctor took one look at my large flat left foot (my plate of meat) and rejected me. I had never begged anyone for anything in my life before, but I begged him to grade me physically fit. As he must have seen how much it meant to me, much to my surprise, I found myself classified fit for the infantry. To be able to do what I wanted was another stroke of luck.

So I joined the light infantry regiment of my home county and completed my three year engagement. It was not easy. I had the sense not to join the Royal Marines or the Parachute Regiment, but perhaps I should have joined a line regiment because the heavy infantry drill at 108 paces per minute would have been easier on my leg. In basic training after every hours drill on the parade ground at 140 paces per minute, my left leg was numb below the knee for several minutes. Again I was lucky that my leg could take it and did not let me down.

After discharge I tried various jobs, and eventually settled for work in a solicitors’ office as I had proved to myself I could handle a physically demanding occupation. However, I did play table tennis for some years and joined a tug of war team. Then in late middle age I was made redundant. But again I had another stroke of luck. The agency found me work as a self employed solicitors’ locum. The pay is 2–3 times better than that of an employed clerk. As I said I am a lucky man.

So for the last 8 years of my working life I carried out this work. What I did not realize is that this is a most stressful occupation. I travelled all over England and Wales, wherever there was an extended temporary vacancy. I never knew what emergencies I would find, in what state the work load would be, how friendly the staff and partners would be, and what the clients would be like. If the work was near home the travelling hours were usually long, my meals omitted or poor and greasy. If accommodation was needed, this was usually poor, and again the food uninspiring. My health suffered, without me realizing it, and I developed hypertension, high cholesterol, and type 2 diabetes. Finally I had a right sided stroke, which has also slightly affected my memory, but again I am lucky as I am left handed.

My nap hand of medical problems was completed, when the traumatic effect of the stroke caused post polio syndrome to rear its ugly head, affecting my legs and lower back. But again I am so lucky. My wife Ruth, has been an absolute treasure making sure that I take my medication, follow my diet, get enough exercise, and generally looking after me.

Despite everything I am such a lucky man.

Southern Region

Summer Outing to Fota

Described so well by one of the participants - Sheila

This is a little thank you for the great day we had in Fota last Sat. In spite of the awful weather it really was most enjoyable. When we arrived at Fota House we were greeted with beautiful apple pie & cream, quite lovely cakes, scones and plenty of hot tea. 

We scattered around the house taking in each room with an audio visual history which was really interesting as we were able to see and hear the actual people who had worked there. We floated through the rooms, danced in the Dance room and quite forgot the rain teeming down outside. 

Little novelty items were on sale, not in the least tacky and before we knew it, it was time for our meal in the “Elm Tree”. This is where I decided we should have a little Magical Mystery Tour! Apparently Evelyn thought we had taken off to some distant country, but, you know, we did turn up exactly on 6pm in the Elm Tree where Eileen became very chatty with a lovely young Polish waiter! Unfortunately he was already married but still we live in hope! 

Chill Out Day and Mini Marathon

Described by our hard-working Regional Rep/Convenor for the Southern Region – Evelyn Wainwright

The Chill Out Day on 23rd September was a great success in spite of terrible weather, with about 35 members attending. In the morning we were shown some ways of remembering people’s names and this was very enjoyable and a bit of fun, and in the afternoon, Joan Bradley gave us an update on Polio happenings in her usual inimitable style and was available for anyone who needed to talk with her. The day finished off with tea at 4.00 p.m. followed by Mass. Many thanks to Michelle and Geraldine for all their help in getting people up and down for the meals and collecting the money, etc.

Failte Ireland accessible accommodation scheme

How many times have you rang somewhere and been reassured that a particular venue is accessible and when you get there it’s anything but? This is especially frustrating if you’ve planned a weekend break and have travelled to your destination.

Failte Ireland has launched the ‘Validated Accessible Scheme’ (VAS). It has been in operation the last couple of years and provides information on registered and approved accommodation for those with special needs. This means that a particular hotel, for example, is assessed by Failte Ireland and graded according to its degree of accessibility.

The scheme has four categories:

Category 1
 Accessible to ambulant people capable of climbing flights of steps with a maximum height between landings of 1.8 metres.

Category 2
Accessible to ambulant people with mobility impairments but capable of climbing three steps.

Category 3
Accessible to wheelchair users including those who can transfer unaided to and from the wheelchair.

Category 4
Accessible to all wheelchair users including those requiring assistance to transfer to and from the wheelchair e.g. carer / partner.

The list is continually updated as and when accommodation providers join the scheme. To view various hotels in Ireland in their accessibility categories, visit www.ireland.ie, click ‘Accommodation’, then click ‘Validated Accessible Scheme’.

The Irish Wheelchair Association also provides some details on accessible accommodation in Ireland. You can contact their Information Department on 01 818 6455.

Mission Statement:

POST POLIO SUPPORT GROUP

To create awareness and provide information regarding the Late Effects of Polio among Polio Survivors, statutory agencies and the wider medical profession, and to work to ensure that Polio Survivors have all needs relating to their condition met.

 

Back to Top