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The Survivor Newsletter: Summer 2003

From The Editor...

Hope you are all well and enjoying the Summer. Well, as you can see from Jim’s update, the Group has been very busy over the past couple of months. I have included 2 extra pages of photos, It is a great record of good times. Thanks to Hugh Conlon and Rox, and Anne Burns, who provided me with photos. In this issue we have a funding report from Hugh Hamilton, two articles which I hope you will find interesting, a letter from a member about Obstructive Sleep Apnoea, information on the situation with housing grants, and an account of Barbara’s holiday in Wexford. The pictures on this page are those featured on the front of our latest fund-raising idea - pack of 12 notelets for €5. Order yours from the office today!

Now, put your feet up and enjoy the newsletter …

Paula

 

 

 

 

 

 

Chairperson’s update ...

Our 10 Anniversary celebration weekend has now passed into history. According to most responses from those present, things seemed to go very well.

On the Friday afternoon, Anthony chaired a meeting of our Regional Reps. who met to discuss their work, both in the past and looking to the future. We are keen to expand the role of the Regional Rep. to try to extend more of a support service to our members.

Our Annual General Meeting followed at which there was a good attendance. Five Board members resigned in accordance with our constitution, four being re-elected and Frank Jones, who has been a member of our governing body for the past seven years, retired. We thank him and we shall certainly miss his expertise.

The dinner to celebrate our Anniversary, which followed that evening, was extremely well attended and members, guests and friends all had a thoroughly enjoyable evening. The dancing and singing later in the evening confirmed that there are many talented people within our membership.

On the Saturday we had our two-part Conference. The morning, which was focused on all aspects of living with a physical disability, saw Prof. O'Neill and Prof. Grimby give most interesting presentations with some excellent information and advice. John Dolan, CEO, DFI, to whom we are extremely grateful, ably chaired this session.

During the afternoon session, Nora Stewart, Survey project co-ordinator, gave a presentation on some early results from our Survey, followed by a further talk by Professor Grimby, this time focused on Polio Survivors. The afternoon was completed with an interesting Networking session among those present, splitting up into various Health Board regions. This session was organised by Anthony and Nora, and we were extremely pleased that so many members were prepared to take part. It is through sessions like these that we can gain valuable feedback from our membership to facilitate the improvement and expansion of our services.

In mid-April, Paula and Barbara, our North Western and Western Regional Reps., organised a Stress Management weekend in Cuisle, Co. Roscommon. By all accounts, everyone attending from both areas thoroughly enjoyed the weekend. The Post Polio Support Group Board was represented by Hugh Conlon, who gave an update on the work of the Group. We appreciate the financial support of both the North Western and Western Health Boards of this event. Our thanks to Paula and Barbara for their hard work in organising this occasion.

Jim - Chairperson

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10th Anniversary Celebrations

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Fund-Raising News …

Since I last reported, fund-raising has passed the €100,000 mark - in fact we are at about €115,000, which isn’t bad in 18 months. WELL DONE TO EVERYBODY WHO CONTRIBUTED, not only with money, but with much hard work as well. I know that a lot of people hate the principle of asking for money (we all do hate it!), but remember, that it is being spent on very good causes, and I promise that the expenses are being kept to a minimum.

The allocation committee has distributed some of the money collected on research at Beaumount and also on our Survey, but the vast majority is being allocated where it is needed most, i.e. aids and appliances, physiotherapy, respite care and orthotics.

However, with the cutbacks in grants from the Health Authorities, we need to renew our efforts to try to compensate for the fall-off in government assistance which is happening at the moment.

As you know, we have just had a raffle, which cleared €4,500 after costs, and we are still tapping away at the corporate sector, although that is getting more difficult. Our Christmas cards were very effective last year, and we will be selling them again this year—more in the next newsletter.

Anne Burns has produced some most attractive notelets, and they are available through the office at €5 for pack of 10.

We are very keen to try to get people involved outside the membership, so how about suggesting to your family or friends that they might like to hold a coffee morning or card game or sports function, which would be fun and at the same time raise money.We are particularly keen to encourage this throughout country areas and if one can just get the idea started, it is amazing how quickly it will snowball—if you or your family or friends would be at all interested, please contact the office and the fund-raising committee will give every assistance possible.

Finally, we had about 50 participants in the mini-marathon this month, which was great fun - see photos on page 10.

Hugh Hamilton - Fund-Raising Chairman

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Have you heard of Obstructive Sleep Apnoea? …

Dear Editor

For some time now have been waking up frequently at night, and in the morning I awake gasping for breath and with a terrible headache. To make matters worse, my husband said I snored very badly.

I wondered if I had a condition called Obstructive Sleep Apnoea. This is quite common in Polio Survivors, and the good news is that it can be treated very successfully.

This interrupted breathing pattern interferes with restful sleep. It affects daytime alertness and makes it difficult to function well during the day.

I decided to find out if I did have OSA, and this is how I went about it.

1. I got my GP to write a letter of referral to the Sleep Centre in St. Vincent’s Hospital (Prof. McNicholas).
2. I then (eventually) got a letter telling me to come for appointment.
3. This was followed up by an overnight stay at the Sleep Lab, where I was monitored for movement during sleep, oxygen levels in the blood and air intake. The results were analysed and I was then told that, yes, I did have OSA.
4. I was asked to come in for another overnight stay, where I was instructed in the use of a Continuous Positive Airway Pressure (CPAP) machine. This equipment continuously and gently blows slightly pressurised air through a nasal mask into the air passage. This prevents the collapse of the airway during sleep. Breathing becomes regular and snoring stops, oxygen level in the blood returns to normal, and restful sleep is restored.

(Please note that there may be a delay of 18-24 months in getting the initial appointment.)

Further information on Obstructive Sleep Apnoea may be obtained from Irish Sleep Apnoea Trust, PO Box 8440, Dublin 24. Or visit their website at www.isat.ie

Silicon, Sex and Polio Survivors …

(From Polio Paradox, by Richard L. Bruno PhD)

(Reprinted with kind permission of the author)

Last January, I got a brand new Macintosh computer that came with a modem. Ever since I’ve been ‘surfing’ the Internet, hardly stopping for food or sleep. You’d be amazed at what I’m finding on the disABILITIES bulletin boards: Sex. Yes, unbridled, undiluted and unimpeded discussions about sex among people with all kinds of disabilities, from high-level quads to quadruple amputees. However, there is one place where I’ve heard no discussion of sex; the Post-Polio bulletin board. There are lots of questions about PPS that you had the answers to years ago: Do I have ALS? Does exercise make you weak? Where can I get a scooter? But not one question or comment about sex.

I guess I shouldn’t be surprised. Many of our patients at Kessler don’t mention sex either. Some mention that spouses do not believed that PPS symptoms are “real”. But, most often, spouses are very supportive about the need for the post polio mate to slow down and take care of themselves, even if that means a new brace, crutches or a scooter. So, if spouses are so supportive, why is there no mention of sex? ALL’S TOO QUIET ON THE SOUTHERN FRONT. There are probably several reasons for the lack of talk about sex:

Many Polio Survivors grew up in the 50’s when discussing sex was the same as walking down Main Street without your pants. Also, 40 years ago, even more than today, people with disabilities were thought not be fully human, let alone sexual beings;

Also, it was vital back in the dark ages that anything not “normal” (that is anything not seen on Ozzie and Harriette) be hidden. So, if a polio survivor expected to have a relationship with someone, the dis –ability had to be hidden. Since the polio residuals were often hard to hide, the disability was often just ignored or denied. It amazes me still how many survivors tell me that they have never, ever discussed the fact they had polio with their spouse, let alone the experience of having had polio or—God forbid—their feelings about it.

The process of hiding, denying or ignoring the reality of what’s happening in one’s body caused problems. Many people just turned off any awareness of their bodies and any feelings they have below the neck. Others have turned off ALL feelings, both below and above the neck. Since you can’t turn off pain without turning off pleasure as well, an inability to feel will make sensuality or sexuality nearly impossible or as appealing as eating dry toast.

Also, walling off one’s feelings also cuts off the ability to be intimate with oneself and with others. And intimacy is the gateway to sexuality. There is a disturbingly high frequency of physical, emotional and sexual abuse among Polio Survivors. Nearly one third of the patients we treat have been physically or emotionally abused, and 25% of the women have been sexually abused. Not surprisingly, those who have been abused are much less likely to risk intimacy or be interested in sex.

Also, not surprisingly, the more obvious the assistive device people used following polio, the more likely it was that had been abused. No wonder polio survivors discarded their braces and crutches and don’t want them back—ever! Now, 40 years later, when PPS symptoms start, and braces, crutches and wheelchairs are appearing again, the painful memories of the past and the reality of disability can no longer be hidden. Old fears of unacceptability and new fears of rejection surface and cut self-esteem off at the pass. And, the old vicious Rules of Society also come screaming back:

Rule 1: If you’re disabled, you’re not attractive;

Rule 2: If you’re not attractive you can’t be sexual;

Rule 3: If you can’t be sexual, you shouldn’t have sexual feelings;

Rule 4: Wear flannel pyjamas and sleep on the couch.

IF I THINK I’M SEXY AND I LIKE MY BODY …

Well, sexy is as sexy thinks. One of the dis –ABILITIES Bulletin boards is actually called “Sex is 99% Mental”. Sure, you may not look like Cindy Crawford or Mel Gibson, but how many non-disabled people do? What counts is how you feel about yourself, not how you look to others. If you’re not acceptable to yourself, you won’t be sexually available to be even intimate with others.

The first step to intimacy and sexuality is recognising and dealing with the emotional reality of the original polio and any abuse you have experienced because of it. Next, you need to identify your own negative feelings about yourself and stop projecting them in to the heads of potential friends and lovers. Since a whopping 72% of Polio Survivors are married, it’s your spouses’ head that you’re filling with your own negative thoughts about yourself and fears of rejection.

Finally, if you turned off your body to stop feeling physical pain, you need the experience of good physical feelings. You need to decrease your PPS fatigue, muscle weakness and pain by decreasing physical and emotional stress. Then you need to start sending pleasant physical sensation to your brain. Try long hot baths, a whirlpool or best of all, a massage. When you make nice to your body and good feelings start travelling to your head, other good physical sensations (like the erotic ones) will follow that “stairway (or ramp) to heaven”.

For those who are single, get a computer, a modem and start “surfing the net”. It is actually possible to meet hundreds of people without leaving your living room. Whether you decide to let them into your life (or your bedroom), the safety of the computer gives you the freedom to be yourself and even practice being intimate with others, without worrying that everyone is looking ONLY at your brace.

When all is said and done, here’s the Golden Rule for being an intimate sexy polio survivor (with apologies to Nike):

Turn off your thoughts, turn on your body, and JUST DO IT!

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Choosing to Flourish: Living a Powerful Post-Polio Life

Linda Wheeler Donahue

Polio twisted me, shriveled me, and weakened me. It left me in the rejected pile like a heap of damaged goods. However, I amazingly triumphed over this paralyzing crippler! No, my damaged and dead neurons did not suddenly spring into life. No miraculous surgery corrected my polio deficits. No magical elixir cured me. My astonishing victory all took place in my mind.

My problems with body image began when I was a little girl. I remember a distinct “look” from churchgoers after the Sunday service. That look was sympathy laden. It conveyed to my parents: “How sad that you have a crippled girl.” I experienced variations of that look all through childhood and into my teen years. We, Polio Survivors, were stared at, looked upon with pity, ignored as though we were invisible, left out of the popular circle, and in some cases, teased and tormented. It did not take us long to make the connection between our bout with polio and social rejection.

We had to develop our own survival mechanisms. Some of us tried to cope by becoming “passers;” that is, trying to pass as able-bodied. We hid our disability as best we could. One polio survivor, who has paralysis in her arms and shoulders, told me of going to great lengths to manipulate her elementary schoolroom surroundings. She created situations that would assure she would be the last pupil remaining in the classroom. She went to all this trouble because she did not want her peers to see her struggle to put on her coat at the end of the school day. I did something similar. I sat on a bench in front of the public library and tucked my atrophied legs under the bench, pretending to be as whole and adorable as Sandra Dee! Creating a false identity comes at a great emotional expense.

Even as adults, we Polio Survivors realize that much of the way we view ourselves, and the world around us, is the result of negative messages ingrained in our psyche over the years. The real crippler, for me, is not as much the polio virus, as the toxic signals I assimilated about my flawed body. I developed low self-esteem from the cumulative affect of thousands of recurring messages telling me that I was not acceptable.

Now I want to tell you how I banished those old malignant messages and replaced them with positive, self-affirming thoughts. It involves me telling you something I am not proud of. All of my life growing up and as a young adult, I avoided people with disabilities. I did not want to acknowledge that I was, indeed, part of that branded population. I am ashamed to say I did not want to lower myself by associating with people with even more stigmatized disabilities. Well, the stroke of irony is this: not until I embraced other individuals with disabilities, could I heal myself.

In 1985, I experienced a life-changing event that led me down a new path. I signed up to attend a conference in Hartford, Connecticut geared to women with disabilities. One image that remains with me even today is the shocking sight of all sorts of mobility devices everywhere in the hotel lobby. There were women in manual chairs, powerchairs, on crutches, on ventilators, pushing walkers, and wielding canes. My emotions went in two opposite directions. One feeling was: “I'm home at last,” contrasted with the reverse feeling: “Oh no! What am I doing here?”

The next image that warms my heart to recall is seeing Shelley Teed for the first time. Here was a strikingly attractive, thirty-something woman with bright smiling eyes and a mass of curly hair going this way and that. Born with spina bifida, she skillfully used a neon bright powerchair. Her tiny legs and feet protruded straight in front of her, and most telling of all, she dressed them in fuzzy RED socks.

Her commanding voice had a theatrical tenor as she projected instructions to various people on how to arrange the room, where to line up the presenters, etc. Shelley was a take-charge person, and what amazed me most was how comfortable she was in her own skin! She whisked around the conference rooms with utter confidence.

I was enthralled. I met my “roll” model for sure. I wanted to be as enlightened and as freed as Shelley Teed. Over the next years, Shelley and I became fast friends. I often think that if I had only met someone like Shelley in my formative years, my self-image may have been very different. Growing up, I never knew anyone who had polio, in fact I never knew any other disabled kids. All I had to inform my psychological struggle were the false messages of Madison Avenue. A “Shelley” in my life at that time, would have gone a long way toward eclipsing the shallow ideals put forth by the mainstream media.

Inspired by Shelley and the other dynamic disabled women at the conference, I decided to become an activist for disability rights. I did a complete 180-degree turn-about, from evading people with disabilities to seeking them out! I found that when I united with other people with disabilities, enduring bonds of friendship strengthened me. In addition, becoming a disability advocate is making the world a better place. When we join forces with other individuals with disabilities, we affirm each other; we gain strength, comfort, power, and healing. Where do you find others with disabilities? Join a local advocacy group; share your gifts at your nearest independent living center; volunteer at a rehabilitation hospital. By joining the disability culture, you will find you are free as never before to be the real you.

When I bonded with other people with disabilities, I learned to reject a lifetime of negative inner self-talk as false and shallow. I opened myself to new, positive thought patterns and began to redefine who I am and what I stand for. I realized that consumerist-driven, stereotypical images of “attractive” are oppressive lies. I bathed in the healing notion that I am OK just as I am, complete with atrophied legs and polio weakened body. When you accept yourself, you project confidence. Society respects you because self-acceptance is stunningly attractive, and something able-bodied people are unaccustomed to seeing in someone who is disabled. Other peoples’ positive responses to you will help you shed a burden you may have carried for decades.

Let me give you an example of this newfound acceptance with my post office story. As a person with an obvious disability, I can never be anonymous, invisible. I am always conspicuous, always the center of attention. Therefore, it was with a certain amount of dread one day that I loaded some packages in my van for a trip to the local post office. Why the dread? Because I get tired of being Exhibit A. Because I do not always feel like being the world’s disability educator to little children. Because I sometimes just want to blend in.

I pulled into the handicap-parking slot, lowered my ramp, and disembarked. I am sure I was quite an interesting sight with my scooter platform loaded with packages. Well, I decided to make this a positive experience! I held my head up, forced a little smile, and drove into the building. All eyes were on me, or so it always seems. This day, I know I gave an image of self-confidence. The postal employees were very pleasant and welcoming and I left the post office with a happy feeling. Nothing was different about the building, about the workers, about the way I drove my scooter . . . no, the thing that was different was something within me, it was my attitude. I felt approval; I even felt admired. I know I can never really be a nameless, faceless person in a crowd. Therefore, I have decided to make the best of my celebrity!

We Polio Survivors grew up being told to always be brave, be good soldiers, and “never ever feel sorry for yourself.” Moreover, being the good soldiers that we were, we obeyed. Now I am here to respectfully disagree with that advice. I think it is perfectly OK to grieve your disability, to mourn your losses; in fact, it will help free your spirit.

Many of us were polio guinea pigs when we were children. We had to display our bodies to groups of male doctors in the interest of “medical education” all without our consent. We may have been asked to strip, walk back and forth in front of complete strangers, and subject our limbs to manual manipulation to determine flexibility. Often we were treated as inanimate objects and talked about as though we were not in the room.

I have begun an initiative with The Polio Outreach of Connecticut in which I invite members to “tell your polio story.” This is a kind of truth telling exercise that I feel will liberate and bond. There are two almost opposite benefits from having people share their disability stories. The first is that many people felt they alone had these feelings and struggles. It was a tremendously positive, affirming thing to hear others express similar feelings. When you address hurts that you never fully acknowledged before, you transform inner realities.

When you tell your polio story, you get a chance to grieve your losses. What was that word? Grieve? We are not supposed to feel sorry for ourselves! However, grieving is necessary and healthy. This is a neglected emotional process; often our feelings are “stuffed” because able-bodied folks among our family and friends do not want to hear that we suffer, that we have losses, that our life is often difficult and painful. I encourage you to grieve your loss as healthy and natural and do not feel you must present a false front of “my disability is no big deal” or “it doesn’t bother me.”

Relive the all-important teenage years and confront the pain. Take time to confide in a close friend or try writing journal entries about your teen experiences. This is a way of allowing the memory to surface in your psyche. Then in the light of day, you can embrace what is good about the memory and eradicate what is hurtful. A profound release from heartache happens when you give way to grief. You face it, process it, discard it, and replace it.

In counseling sessions with people with disabilities, we deal a lot with issues of sorrow over loss of body function. In post-polio syndrome, these losses are gradual over time. Our PPS trail is not a clearly defined path with road signs along the way. It is largely leading us to an unknown destination, and that unknown is anxiety producing. The great thinkers and philosophers tell us that happiness is a choice; we can choose to be happy. I am here to tell you that I know that to be true! All those old negative messages can be erased and taped over with good, strong, positive transmissions. In psychological terms, this process is called cognitive restructuring. I call it choosing to flourish.

Living a powerful post-polio life means you are thankful for simple things. You take comfort in ordinary events, often taken for granted, that millions of people upon the earth can only dream about: a full refrigerator; clean running water; a soft, warm bed; a long hot shower.

When you choose to flourish, you will be released from fear, worry, and self-doubt. Like me that day at the post office, you can decide to start every day with optimism. When you rejoice in each new day, you empty your heart of pain and your mind of worry. You choose to flourish.

Did life with polio weaken your sense of worth along with your muscles? You can improve your level of self-esteem at any stage in life. One way to gain confidence is by simply practicing confidence. Visualize yourself as a proud, confident person. If you act self-assured, you will soon become self-assured. Choose to flourish.

An important way to live your own powerful post-polio life is by adopting the habits of a healthy lifestyle: good nutrition, helping others, laughing out loud every day, taking time with your grooming, and surrounding yourself with positive people . . . all are immensely important. Live a life of high aesthetics. Invite music, books, gardening, art, travel, color, and whimsy into your life. Choose to flourish.

A secret of life is not what happens to you, but what you do with what happens to you. All the resources you need to start living life to the fullest are right there within you. You make hundreds of decisions every day . . . choices abound in your life. You can choose to be bitter and angry or happy and filled with a love of life. If you fill your life with goodness and love of others, you chase away the fog of fear and self-doubt. Happiness is a choice; choose to flourish!

When I opened this essay, I said that polio twisted me, shriveled me, and weakened me. These statements were all true, but I was describing what polio did to my self-confidence. I learned that by changing my mind I could embrace my life with joy and acceptance. I could choose to flourish and so can you.

About the Author:

Linda Wheeler Donahue, Professor Emeritus of Humanities, is a polio survivor, writer, and speaker.

She is President of The Polio Outreach of Connecticut and is a frequent presenter at conferences, focusing on the social/emotional complexities of disability.

Linda’s essays on subjects of disability dignity, positive thinking, and living with the aftermath of polio have been published worldwide. She welcomes feedback and can be reached at LinOnnLine@aol.com.

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Housing Grants:

Dolores Murphy, IWA Housing Officer, provides a round- up of grants and other schemes available to assist with housing adaptation.

(Original article in IWA Magazine - Spokeout. Reprinted with kind permission)

1. Since the 2000 budget, the grant aid available under the ‘Disabled Person’s Grant Scheme’ for housing adaptation to an existing privately owned house, has been 90% of the cost of approved work up to a maximum payment of €20,000. Each local authority recoups 60% of this money from central government. This grant would normally pay towards the general improvement of access to living accommodation for a person who has a mobility impairment and might include work such as widening doors, providing a suitable bedroom/bathroom and improving kitchen design. Application procedures and further details are available from the local council or corporation. Until recently, this grant had not been means tested, but now it is down the discretion of local councils. If your house is owned by the local authority, they will arrange to have the required work carried out and will pay for the full cost of the work involved.
2. There is a Disabled Person’s New House Grant of €12,000 available towards the cost of extra work completed during the construction of a new house to increase the accessibility of the house. Details of application procedures and conditions are available from the local council or corporation. Again, means testing may now be applied.
3. The Essential Repairs Grant, available through the local council or corporation, is payable mainly to elderly people living in their own privately owned accommodation, to assist with essential repairs such as roof and electrical maintenance. The amount of this grant in some council areas is up to €6,500. Again, details are available from the local council or corporation. It seems from reports from IWA members, that recent ‘financial review measures’ by councils may also affect the conditions for application and payment of this grant.
4. Special Housing Aid for the Elderly Scheme - Health Boards operate improvement schemes for elderly people living in privately owned sub-standard accommodation. These schemes do not relate to access improvement, but will provide an emergency response to minor essential repair work which is not covered by other grants. For further information, contact the main Health Board office for your area.
5. Draught Proofing and Insulation—Energy Action is a company that provides a free draught-proofing and home insulation service to people who are living on social welfare payment. Fur further information, contact the company directly.

(Please note that, as of Autumn 2002, the New House Grant, which had been available to all first-time buyers, is no longer available).

In theory, this is the situation, but the REAL situation is set out below in a hard-hitting article in Spokeout Magazine by Dolores Murphy (IWA Housing officer). I know from talking to our members, that many of you are waiting for grants for a long time. This is unacceptable, I am sure you will agree. If you have a story to tell in relation to grants, please let me know.

Paula Lahiff - Editor.

New ‘review measures’ are preventing many people with disabilities from benefiting from the disabled grants scheme. These review measures include priority systems (basically deciding how urgent a person’s application is); means testing; reducing the amount available to individual applicants; and extended delays in processing.

The most significant grant available to people with disabilities in the Disabled Persons’ Grant (DPG), part funded by the Department of the Environment and paid through the local authority. However, recently, local authority funding constraints have already resulted in some authorities being unable to meet funding commitments to DPG applicants, and many applicants have had their grant applications deferred to the following year’s budget. Even more alarmingly, these administration review measures now threaten to erode the value of a housing adaptation grant scheme that was hard won by disabled campaigners and disability representative organisations.

IWA is lobbying and asks its members to lobby local councillors and politicians, to resist the introduction of any of these review measures which can only result in the dismantling of the DPG scheme to the disadvantage of people with disabilities.

Dolores Murphy

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Some Gorey details ...

In June my three sisters and I rented the IWA Disabled Holiday Bungalow in Gorey, Co. Wexford for a week.

The bungalow is available for disabled people and their families at a reduced rent. It has four large bedrooms and a spacious kitchen and sitting room, which are suitable for wheelchair users. It is near the village of Ballygarret, an ideal location for anyone who needs a base, because you can drive to any of the major towns within a few hours. On the other hand, if you prefer peace and quiet, it is situated in a beautiful seaside area, ideal for anyone who want to chill out for a while.

The bungalow is not far from Courtstown Harbour and about six miles from Gorey town. If you are into walking you can walk to the local pub or shop. Your are also near the beach and the roads are fairly quiet around the area.

You must book early in January if you want to avail of the house, as there is always a good demand for it. If you are interested in renting this bungalow, you can get in touch with the Disabled Driver Association. Ballindine, Co Mayo. They will send you on all the information.

It is indeed the sunny Southeast we had lovely weather while we were down there. My sisters and I really enjoyed ourselves, every day we went out to different places, we shared the driving and nobody was under any pressure. I would recommend the house to anyone for nice break at a reasonable price.

Barbara McDonagh

Contact:
Disabled Drivers Association
Ballindine
Co Mayo
Tel: 094 64266

Mini-Marathon 2003

Well, these photos give you some idea of the mini- marathon! We had a great turn-out for this event, with about 50 members and friends jogging, walking and ‘rolling’ for the Post Polio Support Group. The money is still coming in and many thanks to everyone who took part and sponsored this event. A special word of thanks to Anne Burns and Hugh Hamilton who managed the logistics of the whole thing! If you still have sponsorship money to send in, please do so to Anne Burns C/O the office, as soon as possible. THANKS.

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STRESS MANAGEMENT WEEK-END

Western and North Western Regions

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European Year of People with Disabilities - Bus visits Ireland.

The EYPD bus visits Ireland in July as part of its tour of the 15 EU countries. There will be a number of fun activities organised for children and families:- face painting, street entertainers, balloons, music and dance, art exhibitions, painting competitions, award ceremonies etc. For more details, contact Geraldine Moylan - geraldine@pwdi.ie.

2 July - Dundalk (10.00-2.00)
3 July - Blanchardstown, Dublin (10.00-3.00)
4 July - Newbridge (9.00-12.00)
4 July - Kilkenny (3.00-6.00)
5 July - Waterford City (10.00-3.00)
6 July - Cork City (10.00-2.00)
7 July - Galway City (10.00-2.00)
8 July - Sligo (9.00-12.00)
8 July - Letterkenny (3.00-6.00)

The Post Polio Support Group sees this as an opportunity to raise awareness of the needs of Polio Survivors in each area, as well as making contacts. If you are available to attend where the bus stops, please let Anthony know at the office, and we will send you brochures and information to display.Thanks - Editor

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Tapes of Conference

The Post Polio Support Group are looking at the possibility of producing audio tapes of the excellent talks given by Prof. Gunnar Grimby and Prof. O'Neill at this year's Conference “Lifelong Living with a Disability”.. However, we need to gauge the interest before we incur the expense of producing them. If you would be interested in obtaining a copy would you please let the office know by writing, emailing or phoning Anthony or Victor at the office: The cost of the tapes would be €5 each (approx.) depending on the number required.

Tel/Fax 01 873 0338
E- mail: info@ppsg.ie

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Disability Stories:

The Forum for People with Disabilities are looking for disability stories. Contact Steve Davitt at 01 8786077

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CONFERENCE 2003

ADMINISTRATOR – Anthony Carrick
OFFICE ASSISTANT – Victor Purcell

HEAD OFFICE
Tel/Fax 01 873 0338
E-mail: info@ppsg.ie
Website: http://www.ppsg.ie

BOARD MEMBERS

Jim Costello: (Chairperson)
Tel/Fax: 01 668 6986 (H)
Tel/Fax: 01 620 6154 (Hosp)
Email: jjcos@indigo.ie

Joan Bradley: (Secretary)
Tel/Fax: 01 454 9237
Mobile: 087 7637598
Email: secretary@ppsg.ie

Mary McEvoy: (Treasurer)
Tel/Fax: 0502 27204
Mobile: 087 240 1591
Email: treasurer@ppsg.ie

Paula Lahiff: (Newsletter Editor)
Tel/Fax: 071 64791
Mobile: 086 322 4402
Email: newsletter@ppsg.ie

Hugh Hamilton (Fund Raising Coordinator)
Tel: 01 289 4800 Fax: 01 289 2394
Mobile: 087 255 3012

Frank Jones
Tel: 01 820 0320
Mobile: 087 240 1591 or 087 9385537

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

Phillo Mullaney
Tel: 01 832 1629
Mobile: 087 907 4758

Anne Burns (ex oficio)
Tel: 01 453 4150
Email: anne.burns@agriculture.gov.ie

REGIONAL REPRESENTATIVES

Midland Health Board Region:
Patrick Fitzpatrick
Tel/Fax: 0505 46738
Email: paddyfitz@eircom.net

Mid Western Health Board Region:
Noreen Mullane:
TelFax: 061 302830

Southern Health Board Region:
Maureen O’Sullivan:
Tel: 021 4372 017
Fax: 021 4376 032

South Eastern Health Board Region:
Ann O’Kelly Guerin
Tel: 053 32633

Western Health Board Region:
Barbara McDonagh
Tel/Fax: 091 593 664
Email: babamcdonagh@eircom.net

North Western Health Board Region:
Paula Lahiff
Tel/Fax: 071 64791
Email: newsletter@ppsg.ie

North Eastern Health Board Region:
Jackie Minnock
Tel/Fax: : 042 937 7037
Email: jackiem@gofree.indigo.ie

South Western Area Health Board, & Northern Area Health Board
Joan Bradley
Tel/Fax: 01 454 9237
Email: secretary@ppsg.ie

East Coast Area Health Board
Monica Cantwell
Tel: 01 497 1274

Membership of the Post Polio Support Group is only €10 per year. If you would like more information about the group please contact Head Office at the phone number above.

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Post Polio Support Group, Unit 319 Capel Building, Mary's Abbey, Dublin 7, Ireland
Tel: +353 1 889 8920 Fax: +353 1 889 8924 Email: info@ppsg.ie