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The Survivor Newsletter: Spring 2002

AGM 2002

A Date for your Diary

Post Polio Support Group
Annual General Meeting

In: Montague Hotel, Portlaoise
On: Saturday 11th May.
At: 2.00 p.m.

Information regarding the AGM
and our Annual Accounts will be circulated in early April.

Reminder: All members, who have consented to be nominated, are eligible for election to the Board of the Group. Proposal forms will be circulated in April.

A Few Words From The Editor...

Dear Members

Our Spring Newsletter is full of information - hopefully some, if not all, will be of interest to you.

Jim has given you a summary of what has been happening in the Office and with all our on-going projects. Election Time is here again, and he has told you of our campaign to inform our political representatives what Polio Survivors need. Please send the enclosed lobbying letter to your local TDs, and when they come to the door, let them know that we have requirements which need to be addressed.

We were shocked and saddened to have lost Rosaleen Gallagher so suddenly. Joan has written a lovely obituary about her on page 5. She accomplished so much in her life, and was an example to us all.

It is just great to get articles from our members - thank you so much! John McFarlane tells us about Hot Tubs on page 7 and Jackie Minnock encourages us to go ‘Distance Learning’ on page 9. Joan Bradley tells us about the Post Polio Support Group Survey on page 11 and Hugh Hamilton fills us in on the Fund-Raising Project - A Link To Dignity - on page 13.

As you can see from the cover of our Newsletter, the Annual General Meeting has been set for Saturday 11th May in the Montague Hotel, Portlaoise. Please do your best to come to the AGM, as we have planned an interesting and informative afternoon. This is also a chance to meet old friends and make new and let us know if you have any concerns. There are some vacant places on the Board and we urgently need members to be nominated to fill these places. Proposal forms will be circulated in April, and we would encourage you to nominate someone to go forward for election.

Finally, lets see if we can contribute to the fund-raising by taking part in the Women’s Mini-Marathon, or encouraging others to do so on our behalf. Also, have a look at Hugh’s list of other fund-raising activities on page 15, and ask yourself - CAN I HELP WITH ANYTHING HERE?

Enjoy the Newsletter - Paula Lahiff, Editor.

From The Chairperson

The New Millennium seems a long time ago now, everything moves so fast these days its hard to keep up. We strive for perfection, but alas we never reach it. That's life, not an easy path!

Our postponed January Board meeting commenced with a minute's silence in memory of our Board member, the late Rosaleen Gallagher whose sudden death shocked us all. She will be sadly missed, firstly by her family and friends and secondly by our Group, as she had many years of experience in the disability field. Joan and Paula attended her funeral in the West on our behalf. Noreen Mullane who was a close friend also attended. An Obituary is included in this newsletter. A memorial Mass was held in the IWA in late January, Hugh, Frank, Joan and I attended. May she rest in peace.

I am pleased to report that we have now been allocated our own Office in the Carmichael Centre. Aisling our Administrator is presently on maternity leave, we wish her well, and a smooth passage over the coming months. Jennifer Roberts has joined us as acting Administrator during Aisling's absence. Victor Purcell who has also joined us will be our office assistant for the next 12 months. Victor is on the Government CE training scheme. We welcome them both to our fold. Our Office will be open now Mon-Fri. up to 2.30 pm.

The planning of our comprehensive survey of Polio Survivors is proceeding well. We have appointed a project co-ordinator Nora Stewart, to plan and manage this important project. An article on this project is included in this edition. The Business Breakfast launch of our fundraising project was extremely successful. Hugh Hamilton, who chairs this sub-committee, is to be congratulated on the result. Hugh has a fundraising update report elsewhere in this newsletter. Our Information Literature update planning is proceeding. This work takes considerable time due to both design and copyright queries. We hope to have our new leaflet available soon and later a new updated booklet aimed at the medical profession. We will then commence work on a new general poster.

An Election is coming shortly. It may be another five years before the next one, so now is the time to lobby all politicians. With this in mind, and on the advice of our voluntary political advisor Garrett, to whom we are most grateful for assistance, we have planned a campaign to highlight the situation of Polio Survivors in Ireland and the particular demands our Group wishes to emphasise. We have recently written to Micheál Martin, Minister for Health & Children stating clearly our Group’s present position. This letter has been copied to the Taoiseach, all party leaders and their spokespersons on disability, as well as the members of the Joint Committee on Health & Children. With this newsletter, we have enclosed two copies of a lobbying letter setting out the needs of Polio Survivors, which we would ask all our members to send to their local TD's requesting their support for our campaign. Just add your address at the top, your TD's name, sign the letter and post it to his/her local office or the Dail..

Due to the change from Irish punts to Euros, we have had to review our membership fee. The Board has indicated that it should be set at €10.00. A proposal to that effect will be put to our AGM, which this year will be on Saturday 11th May, in the Montague Hotel, Portlaoise. Looking forward to seeing you all there.

Jim.

Obituary

Miss Rosaleen Gallagher

It would be impossible to calculate the number of people with disability, and indeed many without disability, who were touched for the better by the life of the late Rosaleen Gallagher.

She was born in Bangor Erris, Co Mayo and after spending some years in hospital, as a child, she overcame her disability and went on to become one of Ireland’s top wheelchair athletes. She represented Ireland in the Paralympics from 1968-1988, winning medals in 1968,1972,1976,1980 and 1984. She was undefeated in the pentathlon event for 12 years. Aside from her own achievements in the athletic field, that were a constant encouragement to other young athletes, she spent much time on a one to one basis giving help and advice on how to win the prize. When she handed on the challenge of international competition in athletics to the next generation, she completed a course of training in peer counselling, and gave freely of her time as a member of the Irish Wheelchair Association peer counselling team.

On the social side she helped run a disco night for young disabled people, where she was very popular with everyone. This was all done, until her recent retirement from Data Products Dublin, while working in a normal 9 – 5 job.

In the 1985, Rosaleen set about raising finance for Rehab in her own beloved county of Mayo, and raised the grand sum of £42,000. She did this partly by running the ‘Queen of Connaught’ competition which proved a great success. Because or her success and the high respect, in which she was held at home, she was nominated Mayo Person of the Year. A plaque was erected in her honour in her local community centre on 15/3/86. Rosaleen was heard to say that while her feet, or wheels in her case, were in Dublin her heart was always in her home County of Mayo.

Her achievements internationally, and her contribution to the welfare of those not as fortunate as herself, were recognised by the New York Mayo Association, who in the 201 year since their foundation, honoured her by naming the 11th March ‘Rosaleen Gallagher Day’. Paul O’Dwyer presented this honour.

In 1993 Rosaleen was a founder of the Post Polio Support Group and she was a member of the board until the day of her death. Her advice and practical assistance there, given in such a cheerful and helpful manner, did much for the development of the group. She never allowed her disability get in the way of achieving anything she thought worthwhile. It could be said of her, as was said of the woman in the Bible: -

‘She did what she could.’ Mk 14:8.

We would like to offer our sincere sympathy to her family and to the all those who were touched by her life, in their loss of a relative, friend and a truly remarkable woman.

Joan Bradley

Hydrotherapy ...

What does hydrotherapy mean to you? Well, if like me you are in your 50's, it probably conveys the impression of great big stainless steel tanks in which you were plonked down in a little cut-out, whilst water jets played on you. All in the name of progress and physiotherapy. It then died out of fashion and most hospitals got rid of them as pressure of space plus the high maintenance costs dictated other uses for both the space and the finances.

Jump forward some 45 years into the 1990's and hydrotherapy has become sexy, well at least in marketing terms, and is being sold under the generic name of ‘hot tubs’. You see them advertised everywhere; papers, magazines, TV. They are back in a big way as a social activity. They come in all sizes from tubs for 2 people, to those in which you can hold a party for 11 or 12 people.

However what is not widely known is that these ‘consumer’ items can, in some cases, be considered as medical equipment. This means that in the right circumstances the purchaser may be able to reclaim the VAT as well as being able to offset part of the cost against MED 1 provisions on Income Tax.

The crucial point is that the hydrotherapy - Hot Tub - must be bought on the grounds of medical necessity and on the advice of health care professionals. Proof of this will be required by both the VAT Section in Ennis, as well as by relevant Revenue Commissioners office, dealing with the person’s tax. If the tub is being bought for a person who has no income tax liability, then the cost can be claimed back by a spouse or parent.

But why buy a hot tub? Well it provides relaxation - at least it does for me. It gives passive exercise and stimulates the circulation. Because of the buoyancy provided by the water, pressure is taken off joints and in turn this provides a great deal of pain relief, for me at least.

Where do you house them? Strange as it may seem - mainly out doors! The original idea is based on practices in the Nordic countries where the sauna originated. But I can assure you there is nothing like lying in a hot tub looking up at the stars even on a frosty night. You get out warm, glowing, relaxed and virtually guaranteed a peaceful night's sleep.

Yes they are expensive ranging typically in price from some € 9000 to €18000. But remember you may get back the 21% VAT as well as a tax credit. In my case that reduced the price by nearly a third. But just remember it must be bought and justified on medical grounds. What you do in it after that - well that's up to you!!"

John McFarlane (email: JMcFarlane1@compuserve.com)

(Many thanks to John for this article. If you need any more information on how the system works, contact John at the email above, or by post to Head Office, and we will pass it on - Editor)

PACE YOURSELF:

One gets to know the world best, neither by immersing oneself in the fray nor by withdrawal into slowness, but by alternating between the two” - (From: The Pocket Philosopher, by Simon May)

(I though this was good advice for Polio Survivors! -Editor)

Distance Education—The Way Forward

Ever thought you'd like to do a course but just didn't have the energy to get to that class in the dark nights of winter? Or that the local centres of study didn't actually have a list of classes that might take your fancy?

Perhaps help is at hand. Ever heard of Distance Learning?

Some years ago I took to this form of education. In 1994 I did a distance education course in Child Care with the School of Practical Childcare. This was a certificate course and ran over a period of 6 months. There were bi-weekly assignments to be returned. The cost of the course included course material and there was attendance at one session, held in Dublin in the College Offices in Blackrock. The College offers a variety of courses and has regular advertisements in the National Papers. There, distance education listings can be found in advertisements and though you may not use the knowledge gained in these courses for job applications, the knowledge I gained through the course I did, was of immense value to me in the rearing of my children. I never did go to work in this particular field but I have the certificate on my wall if I ever decided I wanted to get involved in that particular area. These days when thinking of returning to the work place or just deciding to change direction, extra qualifications are of great assistance.

From that particular course I took on a Diploma Course in Counselling through distance education. This was quite different in method from the previous one. The course material was sent and this was studied. The assessment was carried out in the form of questionnaires which required definite, precise answers, showing that the material had been read and understood. This course was 12 months in duration and yet again it could be a stepping stone to doing a full time Counselling Course, as this particular Diploma Course was akin to a foundation course in most Counselling Courses. I found this course in the columns of the daily papers. Though I must add here that thorough research of some of the courses that are offered in the National Press is needed. The actual quality of the course needs to be assessed and evaluated before parting with any cash!

At the present moment I have just started a course in distance education on Theology being offered by the Priory Institute in Tallaght, Co. Dublin. This was also sourced through an advertisement - in the local church this time. This is a 6 months course and hopefully will be completed in June 2002.

This course is also accredited and would be considered as a foundation to a full time Theology Course if that is what was desired by the participants.

The advantages of distance education is that you are assisted along the journey by Tutors who are a phone call away, or in this day and age some are even an email away. You have the support of fellow students whom you meet at the study days through the course. Some courses don't have these study days but you can get a contact list of people doing the course in your area and you are free to contact them for support and sharing of ideas.

In summary, distance education is a fulfilling way of attaining knowledge without leaving your home, so to speak. It encourages personal growth and the added knowledge leads to a more impressive C.V., if that's what you want from the distance education way of learning.

In this context, “a little knowledge is a dangerous thing” most definitely is not true!

JACKIE MINNOCK

(Information on Courses by Distance Education can be obtained on the Internet - just key in “distance education” (include the inverted commas) in the Search box and click Go)

OUR SURVEY & THE NATIONAL PHYSICAL AND SENSORY DISABILITY DATABASE

You will be pleased to hear that our own countrywide Survey Project is progressing very well. A few of you will have heard from our Project Co-ordinator, Nora Stewart. Nora has been working at great speed and she is now almost ready to get the pilot phase on the road, so to speak. This is why she has contacted a few of you, who were chosen at random, to be the very first to be involved in the Survey. When we are satisfied that it works well and gives the information that we need to help us plan, where possible, for your needs for some years to come, then all our members will hear from Nora.

I can hear some of you crying out: -

“Not another set of questions! “ “We have just been answering them for the setting up of a National Physical/Sensory data base!”

We did indeed send you a form in connection with the Physical/Sensory database, and we want to thank all of you who replied, we got a 45% return which is EXCELLENT!

The National Physical & Sensory Database, NPSDD, as it is called, has been arranged by the Dept. of Health and Children via the Health Boards to record statistics only and will be done by trained key workers. It will give the Government figures so that can provide for all disabled people in Ireland.

Our own Survey is for a different purpose, but both are important. We will use it to estimate your needs over the next few years and well as applying for finance to meet those needs. It will be done by professional Occupational Therapists who work constantly with disability. You will be able to talk to the OT, ask questions and get suggestions on how best to make life easier. In fact you will first receive a form in the post that can fill it out at your leisure and have it ready for when the OT calls, by appointment. You can have questions ready to ask too. I am looking forward to that.

Of course you may not wish to take part in either the Database or our Survey and that is PERFECTLY all right with us. Just say NO and that will be the end of it. Be assured that all information you give us will be kept strictly private.

If you have any worries or wish to discuss anything in this connection you may phone the office or contact me directly.

Joan Bradley. Secretary.

We are awaiting the Stork ...

I thought you might like this photo of our two Administrators.Photo of Jennifer and Aisling from Head Office

As we go to Press, we are awaiting news from Aisling (on the right) on her big event. I know that you all join with us in wishing her the best of everything for the new arrival.

Jennifer (on the left) is ‘holding the fort’ while Aisling is on maternity leave. It is good to put a face to the names when you phone Head Office. We also have Victor in the office, unfortunately I don’t a photo of him yet - watch this space!

Fund Raising ...

The money collected through our Fund Raising Campaign - A Link to Dignity - will be used for the following:

Research: A Research Project is being set up at Beaumont Hospital to determine the rate of decline, the possible predictive factors that can be used to identify those with the neurological form of the condition, and to determine its frequency in the Irish population. The aim is to design a method of identifying and differentiating between those who are affected and those who are not. The study will include a clinical examination, a study of the electrical activity within affected muscles, and an examination of muscle strength and of fatigue. A smaller population of volunteers will be invited to contribute to a study of the metabolism of the growth factor IGF in blood and muscle samples. The aim of this study is to determine whether changes in IGF occur in Post Polio Syndrome.

OUR CONCERN: Medical Card holders can receive aids and appliances from the Health Boards, but all of the above services are practically unobtainable or not covered by Government assistance and must be financed privately.

In the winter newsletter, I was able to tell you that the fund-raising breakfast had raised almost £20,000 at time of going to press. I am now delighted to tell you that this figure has increased to just over £30,000 (€38,000). There have also been some private donations, and these, together with some tax rebates, means that we have raised some €50,000 by the end of January 2002. (This is about 26% of our overall target of €190,500).

The next important function for our fund-raising is the Women’s Mini-Marathon, which takes place in Dublin on June 3rd 2002. (See Notice on Page ). We need as many members as possible to try to get friends to run or walk for the Post Polio Support Group. It is really a great day out and is only as strenuous as you want it to be (some people only walk to the nearest hostelry!). Entrants come from all over the country, so please get your friends to come. If you use a wheelchair, perhaps your friends could push you! The important thing is to raise money by getting sponsorship cards filled up. For further details and to obtain sponsorship cards, contact:

Anne Burns, Tel: 01 453 4150. Fax: 01 289 2394.

While we were pleased with the initial response to our appeal, mainly through the breakfast in November, we still have a long way to go to reach our target. Hopefully, the Women’s Mini Marathon will prove very successful, but we still need a lot of help to reach our target.

SMALL IS BEAUTIFUL is a very wise old adage and we would suggest that members could all help by organising a small event in their area. If you think seriously about it, it need not be a huge effort and can definitely be a lot of fun. Hopefully, people will have lots of ideas of their own, but to help you get started, the following are some suggestions that other charities have found to be worthwile and interesting:

Approach Women’s Clubs, ICA, Round Table, Lions Club, Foroige, etc. to raise funds for the Post Polio Support Group.

How about approaching your local supermarket/garage/chemist or other business for a contribution to our fund-raising. If you don’t ask, you won’t get anything. Don’t forget we are eligible for tax purposes and forms are available from Head Office.

If you need assistance, please call your Area Representative or Hugh Hamilton (Addresses and Phone Numbers on back page)

HUGH HAMILTON - Fund Raising Committee

News from the Regions ...

SOUTHERN (CORK/KERRY) AREA:

A DATE for your Diary.

AWARENESS WEEK-END.

Saturday 21st and Sunday 22nd September 2002.
Venue: St. Dominic’s Conference Centre, Montenotte, Cork.

Programme:

Saturday:

Information Sessions (suggestions welcome).
Saturday Evening and Sunday:
Relaxation/Stress Management Course—Tutor: Anne E. Alcock.
Further Details from Maureen O’Sullivan, Area Rep. Tel: 021 4372017

NORTH EASTERN AREA:

Jackie Minnock, Area Representative for the North Eastern Health Board Region, is now on-line - so if you wish to contact her on the email, her address is: jackiem@gofree.indigo.ie.

WESTERN AND NORTH WESTERN AREAS:

In response to a request made at the Regional Meetings, Paula and Barbara (Regional Reps for North Western and Western Health Board Regions) are hoping to organise a Stress Management Week-End (on the lines of those held in the Southern Region), next October in Westport, Co. Mayo.

In order to find out if there would be enough people interested in a week-end such as this, we are asking members from the Western and North Western Regions, please fill out and send the form on opposite page to Head Office before the end of March 2002.

Please note that this is an exploratory exercise only, as we would need a minimum of 20 people to make a week-end such as this a viable proposition.

We have not obtained any funding for this Project as yet, but are exploring the possibility of looking for some ‘Respite Care’ funding from the Western and North Western Health Boards.

IF WE WANT TO MAKE THIS WEEK-END HAPPEN, THEN IT WILL HAPPEN!

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