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The Survivor Newsletter: Spring 2003

Chairperson’s update ...

In some ways I find it difficult to believe that our Group is 10 years old this year, but in other ways it often seems longer. It has certainly required a difficult struggle on many of our parts, both past and present, to get us to where we are today. In 1993 we were a small voluntary Group with some 50 members, today we are still a small voluntary Group, but with 450 members nationwide, funded in part by all the Health Boards and the Polio Fellowship, and with our own office, a professional administrator and an Office Assistant.

As I know most of you are aware by now, in order to celebrate this occasion and the European Year of People with Disabilities, we have expanded our usual Saturday afternoon AGM into something a little more special. Our AGM will be held in the Green Isle Hotel on Friday 25th April at 6.00 pm., after which, at 8.00 pm., we will have a Celebration Dinner. I would encourage all members who can possibly attend, to do so. It will be our biggest social event so far and will give members time to mix, swap stories and ideas and generally have a good time.

The following day, we have arranged a special one-day Conference, the morning session entitled “Lifelong Living with Physical Disability” which will be open to all physically disabled people and will have two guest speakers, Prof. Gunnar Grimby from Sweden and Prof. Desmond O’Neill from Tallagh Hospital. The afternoon session will consist of a report on our Survey given by our Project Co-ordinator, Nora Stewart, a further lecture from Prof. Grimby, focused for Polio Survivors, and a networking session for our membership.

We would very much appreciate if those members who are able to attend the dinner on the Friday, would return their booking form, sent recently, as soon as possible, if they have not already done so. Don’t forget, if you require overnight accommodation, you must book this yourself directly with the hotel involved. The usual AGM information will be posted out in late March. Due to the decreasing position of Government finances, and therefore the reduced availability of Health Board funding, our fundraising efforts have unfortunately become much more important to the work of our Group. Our main events this year will be the Ladies Mini Marathon and the sales of our Christmas Cards. Other events, such as our present raffle, are also being organised by our hard working fundraising committee. We are fully aware that some members are not able to assist with these events and would sincerely hope that they would not be concerned regarding this. We only request that members and their families and friends who feel able to, would do so, and we very much appreciate their support.

Looking forward to meeting many of you over the last weekend in April. Hopefully, with Anthony around now to oversee things, I will get more time to talk to members.

Jim - Chairperson

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Women’s mini Marathon 2003 ...

The Fundraising Committee would like to take this opportunity to thank everyone who participated in and contributed to the Post Polio Support Group in last year’s Evening herald Women’s Mini marathon. We had over 40 participants in the event, who, in wheelchairs, walking and running, raised in excess of €8,500 in sponsorship for the Post Polio Support Group. For our first year’s involvement in the event, this was a great achievement, and by all accounts, a ‘fun day’ was had by all.

We intend again this year to fundraise through this event, which takes place in Dublin on 2nd June 2003 (June Bank Holiday). The 10K race starts at 3.00 p.m. from Fitzwilliam Sq., and finishes in St. Stephen’s Green. It is strongly recommended that participants arrive at the assembly area (St. Stephen’s Green) at about 1.00 p.m. to enjoy the atmosphere, locate the baggage area, toilets, etc., and to relax.

We hope for an increased number of participants and to exceed the sum raised in 2002. We urge you, along with family members and friends to take part in the 2003 Women’s Mini marathon. Now is the time to start planning for the event.

Remember that being sponsored for a charity does not entitle you to participate in the race. Participants must also enter on the official entry form which will appear in the Evening Herald every Thursday and Saturday from Thursday 6th March to Saturday 26th April, 2003, enclosing €12 entry fee. The closing date for receipt of entries at the address given in the Evening Herald is 30th April, 2003. Special features and details relating to training programmes will also appear in these issues of the Evening Herald.

Post Polio Support Group T-shirts will again be provided free of charge to participants together with sponsorship cards. Details can be had from the undersigned at 31 Boyne Court, Harold’s Cross Road, Dublin 6W, tel. No. 01-4534150, fax 01-2892394 or email info@ppsg.ie

Even if you cannot sponsor someone directly to take part in the marathon, but would still like to help with this effort, you can still sponsor Post Polio Support Group members Joan Bradley and Paula Lahiff, or member of Post Polio Support Group Fundraising Committee, Philo Mullaney, or simply contributions can be made, along with sponsorship cards, which are enclosed with this Newsletter

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The Do-It-Yourself Holiday ...

Having spent my holidays in Co. Clare last year, which I really enjoyed I have to add, I decided this year that I would like to feel the sun on my bones. Not only mine, but on the rest of my family too.

We have been on two package holidays, which we have really enjoyed. The type of holiday we like is a fairly quiet one. Our children are aged 11 and 9 and do like to meet up with other children their own ages, but could easily be contented if they did not. As long as there is a swimming pool or a beach, they are content.

This year we decided to be adventurous and try and organise our own holiday from start to - hopefully - finish over the internet. To start with, we picked the place - Italy. We searched out the internet for cheap flights to Italy and came up with cheap mid-week flights to Bologna. We booked these and then worked our way from there. We hired a car and were delighted to discover that, with Disabled Drivers’ Membership, we were entitled to 20% discount when we booked our car. Some countries actually have cars with hand controls fitted, but unfortunately Bologna is not one of them. Perhaps next year!

The next step in the adventure was to get onto the website for the Italian Tourist Board - www.enit.it - if anyone is interested. From here it was possible to get names, web addresses and email addresses for as many campsites, hotels you required. We have decided to make Bologna our base and worked our way over the east for our first week. We will be staying in a campsite in a place called Ravenna. From here, for our second week, we will make our way back through Bologna and head for Pisa, it of the leaning tower fame. We nave booked a campsite on the coast there.

The AA website gives detailed route plans, distances, tolls for the motorways and also rest stops along the way. Their route plans are detailed and excellent for the first time traveller on the infamous Italian roads.

I have found on the campsite websites that many of the campsites are suited for people with disabilities, so I am looking forward to that. I will not be taking my wheelchair with me, but I will be taking my walking stick and will be vetting these campsites to make sure they are what they say they are.

We are off in June, so I will report back on the ‘great adventure’, and if the holiday turns out to be as good as the holiday was to organise over the internet, we will all be happy travellers. We will report back in the Autumn Newsletter, whatever way it turns out.

Jackie Minnock

The Comprehensive Survey of Post Polio Support Group members is almost complete

The Comprehensive survey is going very well to date. We have turned the corner and are now heading for the finish!

222 survey questionnaires have been returned, closing the chapter on the Occupational Therapists visits. There have been very few difficulties carrying out the survey and people have been extremely helpful to the Occupational Therapists. I attended two of the interviews myself for the purposes of taking photos, to be used for our reports and presentations.

We anticipate we will have most of the results available in time for the Post Polio Support Group AGM in late April, where a report will be made to all those attending. There will also be a written report available for all members who are interested.

I would like to thank all those who agreed to participate in the survey for their patience, co-operation and good humour. We are delighted with the participation and anticipate your continued interest in this project.

I would like to hear from anyone who is interested in assisting the group to disseminate the results of the survey. This would involve some time in becoming acquainted with the relevant points of the report ,and going out and meeting with a range of organisations and institutions to tell them about the issues raised in the study and how we might work together with them in seeking solutions for those Polio Survivors in need. If you would like to know more about this, please contact Nora Stewart on 01 283 9761 or 087 2932 883 or nora@teamtrainingireland.com.

Nora Stewart
Survey Project Co-ordinator
1 March 2003

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Stress Management Weekend for Members in the NWHB and WHB Regions ...

We are delighted to report that plans for this week-end are well in hand, and we have received funding from both the NWHB and the WHB, as well as the Post Polio Support Group, towards the cost. This event will take place on 11th/12th/13th April, 2003 at Cuisle, Donamon, Co Roscommon. The Week-end will commence with registration and dinner at Cuisle on Friday evening, followed by networking and entertainment in the bar.

On Saturday morning, after a welcome and update on the work and activities of the Post Polio Support Group, we will have a question and answer session on aids and appliances and grants available for people with disabilities, with Occupational Therapist, Rosemary Lennon. Many of our members in the North West will have met Rosemary, as she visited our members in this region during our Survey.

This will be followed by a talk from Eileen O’Dowd from the Money Advice and Budgeting Service (MABS), where our members will get an opportunity to ask questions about financial and budgeting matters in a confidential environment.

After lunch we will be joined by Psychotherapist, Breda Fadden, who will teach us how to relax, show us some reflexology techniques and gentle exercise, and generally how to make the best out of life.

We will have some time for ourselves before dinner, and this will be followed by entertainment in the bar.

On Sunday morning, there will be mass after breakfast, for those who wish to attend, and a final relaxation session with Breda.

One-to-one massage sessions will be available during the week-end for those who wish to avail of it.

Cuisle is owned by the Irish Wheelchair Association, and is situated in a beautiful area in Roscommon, which is just right for some rest and relaxation.

The cost of the week-end is €65 per person, inclusive of accommodation, meals, speakers and entertainment.

There are a limited number of places still available for this week-end, so if you live in counties Galway, Mayo, Roscommon, Sligo, Leitrim or Donegal, please contact Paula Lahiff (071) 64791or Barbara McDonagh (091) 593664.

We hope to organise similar events for other Regions in the near future - Editor

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Regional Reps Meeting …

There will be a meeting of the Regional Reps in the Green Isle Hotel on Friday 25th April, on the afternoon of the AGM, from 3.00 - 5.00 p.m. Reps will be asked to give a short report on activities in their region, what meetings they attended; DFI meetings, PwDI meetings, and any Health Board meetings, on behalf of the Post Polio Support Group.

Anthony, our Administrator, will then address the meeting with regard to the future role of the Regional Rep., including Social Initiatives, Speaking Engagements (Rotary etc.), Local Radio (RTE, RnaG, Community Radio), CIC Liaison and Member Volunteer Opportunities. Hugh Hamilton, Fund Raising Chairperson, will also address the meeting. The Board and Administrator are anxious to develop the role of the Regional Rep., and all suggestions will be welcomed. Paula will be stepping down as Regional Rep Co-ordinator next year, as she feels that it is time for someone with fresh ideas to take up this baton. Don’t worry, she is not going anywhere, but you know what they say, “a change is as good as a rest”.

If you, our members, have any suggestions on how the role of the Regional Rep would be more meaningful to you as a Polio survivor, please let us know before the meeting. Also the Regional Reps are very anxious that they would know the names and contact details of all members in their region, so that they can get to know you, and be a contact for you if you have any difficulty, or even if you would just like to phone them for a chat. So we are encouraging you to fill in the form enclosed with the last mailshot and allow your name to be given to the Regional Rep. If you have lost the form, just phone Anthony or Victor at Head Office and let them know. - Editor.

My New Calliper ...

Like every polio survivor I had a long calliper when I was young, I grew out of it and that was the end of it. I did not want another one ... but that was then! So now I decided I had to do something about my leg, because it was getting weaker and losing power, and by chance one day I met a woman that I know and who happens to be a physiotherapist She told me about Brian Kinsella, an Orthotist who has a clinic in Galway once a month. She suggested that I should go and see him, and so I got application form and filled it in, got my doctor to sign it and waited to be called. One good thing about Brian Kinsella is that he spends the time with you and will make sure that everything is fitting OK. And you can keep going back to him until it is right.

Of course it takes some time to get used to this new leg, and every thing you do will be slower at first, but one will get used to that.

I walked around with a foot drop calliper for years. But it did not give me the support that I needed. I should have had this new calliper years ago. I would recommend that Polio Survivors should have a look at the modern callipers they can make today. The are much lighter than the older ones and you can have any colour that you fancy.

I wore the calliper for the first time this weekend and I can not believe the confidence that it has given me. I am a new woman! I am standing up straight for the first time in my life, and another thing, when I look down my feet are facing in the same direction!

I walked tall this weekend and felt very good. I can go to the supermarket now and push a trolley around on my own. Another good thing is that I can go around with one stick, instead of the two crutches, which I have had to use before, and that leaves one arm free, which is freedom indeed!

Barbara McDonagh

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We are Survivors …

We were born before television, penicillin, polio shots, frozen foods, plastic, contact lens, videos and the pill

Were born before radar, credit cards, split atoms, la-ser beams and ballpoint pens, before dishwashers, tumble dryers, electric blankets, drip dry clothes and BEFORE MAN WALKED ON THE MOON. We got married first and then lived together (how quaint can you be!). A BIG MAC was an oversized raincoat and crumpet we had for tea. We existed before house-husbands, computer dating, dual careers and sheltered accommodation was where you waited for a bus.

We were born before day care centres, group homes and disposable nappies. We had never heard of FM radio, tape decks, electric typewriters, artificial hearts, word processors, yoghurt, young men wearing earrings. A chip was a piece of wood or fried potato. Before 1940 “Made in Japan” meant junk and “going all the way” meant staying on the bus to the depot

Coke was kept in the coal shed, a joint was a piece of meat you had on Sunday and pot was something you cooked in

A gay person was the life and soul of the party and nothing else, while AIDS meant beauty treatment or help for someone in trouble

We, who were born before 1940, when you think of the way in which the world has changed, must be a hardy bunch. No wonder we are confused and there is a generation gap today

BUT …
BY THE GRACE OF GOD WE HAVE SURVIVED!
Alleluia

And on top of all that we survived Polio too! — Editor

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Twelve Warning Signs of Health ...

From a bulletin board in Waldport, Oregon, unidentified author, reprinted in Whole Earth Review (Winter '94).

1. Persistent presence of support network.
2. Chronic positive expectations, tendency to frame events in a constructive light.
3. Episodic peak experiences.
4. Sense of spiritual involvement.
5. Increased sensitivity.
6. Tendency to adapt to changing conditions.
7. Rapid response and recovery of adrenaline system due to repeated challenges.
8. Increased appetite for physical activity.
9. Tendency to identify and communicate feelings.
10. Repeated episodes of gratitude, generosity or related emotions.
11. Compulsion to contribute to society.
12. Persistent sense of humour.

Cottage Pie …. Low Fat Recipe
(Now, now, it’s Lent, remember!)

450g potatoes, peeled and cut into small pieces
225g leeks, chopped
450g lean minced lamb
1 onion, finely chopped
300ml stock (a chicken or vegetable stock cube will do fine)
200g chopped tomatoes

Preheat the oven to 200ºC/400ºF/Gas Mark 6. Boil potatoes until nearly cooked, and then add leeks and cook until both are soft. Drain and mash them to-gether. Dry fry the mince and the onion for 5 min-utes. Add the stock and tomatoes and transfer to a large ovenproof dish. Season with salt and pepper. Top with leek and potato mixture, and brush top with beaten egg or low fat milk, then cook in the oven for 30-35 minutes or until golden.

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Letters to the Editor ...

The following an extract from a letter received from Beaumont Hospital in reply to one of our Member’s complaint re excessive waiting times at Dr. Hardiman’s Clinic—Editor.

“I would like to apologise to you for the distress and upset caused by the long delays you experienced when you attended Dr. Hardiman’s Out Patient Clinic on a number of occasions. The fact that you have to travel from Kerry for every visit must make your journey unbelievably difficult.

I have received a response from the Manager, Surgical Secretariat, and she tells me that patients who live long distances from Dublin will be given early afternoon appointments in order to facilitate their situation and other issues relating to Dr. Hardiman’s Clinic. Dr. Hardiman’s secretary has put a huge amount of work into changing all the appointments so that they reflect the patient’s geographical location. They believe that this aspect of the clinic is now working quite well. They are confident that this will not be a problem for you in the future.

I would like to thank you for taking the time to let us know your concerns. I hope that, through the issues you have raised, Beaumont Hospital will be able to provide a more efficient service to all patients attending clinics, but in particular patients like you who have to travel long distances.

If I can be of further assistance to you please do not hesitate to contact me.

ANGELA CONNOLLY—Patient Representative”

If you are travelling long distances, please let Dr. Hardiman’s Secretary know this, so that she can give you an early appointment—Editor.

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Proposed introduction of Roadside Letterboxes

Chairperson Jim has recently written to Gerry Noble, Customer Service Manager, Letter Post, An Post, regarding the above, and here is his reply—Editor

“Old age pensioners and the disabled who live alone will be exempted and special arrangements will be put in place to continue their door to door service. The details of how the applications for deliveries in such circumstances will be processed has not yet been agreed, however, this will most likely be managed at local Area Office level. Notification of the procedures will be published in advance of any delivery changes”

So look out for the published notice regarding any changes and then contact the Manager in your local Area Office if you have any concerns on this matter.

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Joan’s Tip of the Month …

Just in case you have not already discovered the fol-lowing tip, here goes!

If you have a problem pulling clothing off over your head, there may be an easier way.

Sit on a chair beside your bed, lean forward until your head rests on the bed, or if not until your head is nearly on your knees. Catch the offending garment and pull it off, it is much easier on the arms from that position. (Something to do with gravity I suppose). This can also be done from a standing position if you have enough balance to do it.

Joan Bradley.

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Correspondent would like to make contact with members from Donegal …

I have had some email correspondence with a Polio survivor from Greencastle, Co Donegal, who has been living in the US for many years. He contracted Polio in 1949/50 and is trying to trace his medical records. He would like to make contact with other people from Donegal who may have contracted Polio around the same time. His email address is: smokey@ziplink.net Do give him a call!

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Smiling …

Smiling is infectious, you catch it like the flu.
When someone smiled at me today,
I started smiling too.
I passed around the corner,
And someone saw my grin. When he smiled I
Realised I’d passed it on to him.
I thought about that smile,
Then I realised its worth. A single smile, just like
Mine, could travel around the earth.
So if you feel a smile begin, don’t leave it
Undetected - Let’s start an epidemic quick and get
The world infected.

Author Unknown.
Reprinted from Polio Post News—June 2001.

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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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Tel: +353 1 889 8920 Fax: +353 1 889 8924 Email: info@ppsg.ie