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The Survivor Newsletter: Spring 2004

Chairperson’s update ...

I do hope that you all had a good break over the Christmas Holidays. Lots of fun and enjoyment, we all need a bit of relaxation now and then. Life is such a mad race these days that it’s nice to step aside and just unwind for a short while, if one is lucky enough to be able to do so.

The work of our Group over the last few months has been concentrated on getting our Survey Project completed. Thankfully we are now past the Report printing stage, and the Report will be launched in mid-February. It will be posted on our Website after the launch. Copies of both the summary and the main report will be available to all members following the launch. There will be a short overview given on this report at our AGM in May.

Hugh Hamilton, our Vice Chairperson and I attended a meeting of European Polio Support Groups in Brussels last November. (See Photo on last page) There were representatives present from a number of European countries including Belgium, Holland, Germany, France and the UK. There was also support expressed for the meeting from Italy and Hungary . The aim of the meeting was to come together and form an umbrella group of polio support groups within Europe. It is hoped that this group, the ‘European Polio Union’, will receive some funding from the EU (often difficult to achieve) and will then be in a position to lobby the Commission and Parliament on behalf of Polio Survivors throughout Europe. It is also hoped that the EPU will be able to facilitate the exchange of information between Groups throughout Europe, and promote awareness among the European medical profession regarding the problems that Polio Survivors throughout Europe are now facing, i.e. the Late Effects of Polio (Post Polio Syndrome). This meeting received some publicity in the Irish Independent here in Ireland and also in other countries throughout Europe. It was also written about in ‘The Lancet’ a prominent medical Journal in the UK. (A reprint of this article is included in this newsletter)

Our Christmas cards and collections went very well this year. I wish to thank most sincerely all those in various parts of the country who assisted in any way in the selling of our Christmas cards or helped with our collections. This is one of our main sources of fundraising income and is obviously of great importance to the work of our Group. Hugh will be reporting on fundraising elsewhere in this newsletter.

Regarding news from our HQ, Anthony is working away like mad on the completion of the survey project, amongst all the other work. Victor , h a v i n g completed his term on his CE scheme, has joined our staff on a part-time basis on a six-month contract is. Carmel Clarke has joined us as our new CE worker. She is most welcome, and will be working in the afternoons. This means that our office phone should be manned most of the time up to 4 pm, even when Anthony is out at meetings.

Hopefully, 2004 will be a better year for us all – even though 2003 might have been good also! Keep well. Jim.

Jim - Chairperson

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From the Editor …

I was debating whether to put Winter or Spring on the heading of this Newsletter, but as it will be the month of February before you receive it, it will be officially Spring! I can hear you say, what happened our Winter Newsletter? Well we decided to hold it over until now because of the Christmas post situation, and also because we knew we would have more news about the success of the Christmas Card sales and the launch of the Survey.

We have a very full Newsletter for you, this time, with news of Jim and Hugh’s trip to Brussels, with a follow-on article which appeared in the Lancet and an article about the European Post Polio Task Force, as well as a list of Polio Books and a book review, fund-raising news, regional news, and much more…

Mary our Treasurer has asked me to remind you that subs for 2004 are now due. Form and envelope are enclosed with this Newsletter. The sub remains at €10, but of course, as usual, all donations, no matter how big or small, are gratefully received. So if you cannot afford the sub, don’t worry about it, but on the other hand, if you feel like giving more than €10, then that would be OK too!

Please make a note of the date for the AGM— Saturday 15th May, I find that once I can notice a stretch in the evenings, the time will fly, and it will be upon us before we know it! It will be held in Portlaoise this year, in the new Heritage Hotel, and we are hoping for a good turnout of members. It is a great time for networking, so why not make a week-end of it!

And finally, don’t forget to keep an eye on the national and local media for news of our Survey Report, which will be launched on 18th February.

Paula Lahiff—Editor

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We would like to remember Billy Sugrue and Joe McGowan, and any other members of the Post Polio Support Group who passed away in 2003: Also, Anthony’s father who died at Christmas time. May they rest in peace.

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Proposal for EFNS scientific Task Force for "Post-Polio; Guidelines for diagnosis and treatment" ...

Objectives:

To clarify and define the various terms used for the disabilities experienced by previous paralytic polio patients, and propose a common understanding and definition of the term "post-polio syndrome" in Europe.

To give a brief review of the proposed mechanisms behind late polio deterioration.

To set up guidelines for health care interventions for this patient group.

Need for guidelines:

Large patient groups in Europe and the rest of the world have muscle weakness after previous paralytic polio. In Scandinavian countries, the estimated prevalence of patients with previous polio is 0.1-0.2% of the general population. From descriptive studies, we know that these patients experience deterioration several years after their acute disease. Several terms like post-polio syndrome, post-polio muscle atrophy, and post-polio muscle dystrophy have been used, without any common understanding of the terms with in Europe. These patients seek increasingly rehabilitation and other health care interventions, and there is an ongoing discussion which treatment should be given to this group. Voluntary organisations in the USA have published guidelines for the care of post-polio patients, but there is still confusion about what advises and treatment that should be given. We find there is a need of common European evidence based guidelines for therapeutic interventions for this group.

Search strategy:

Publication involving the terms "post-polio syndrome, post-polio muscle atrophy, post-polio muscle dystrophy, polio -- late consequences, polio -- late symptoms, polio -- treatment" will be sought, and classified according to the guidance for EFNS Task Forces by Hughes et al., 2001. In addition, information from patient and other voluntary organisations, and existing guidelines used in the USA will be reviewed and validated according to the above.

Members of the Task Force:

• Prof Nils Erik Gilhus (Chairman), Dept of Neurology, University of Bergen, Norway.
• Dr Elisabeth Farbu, Dept of Neurology, University of Bergen, Norway.
• Dr Robin Howard, St Thomas' Hospital, London, UK.
• Prof Michael P. Barnes, Newcastle, UK. Associat
• Prof Kristian Borg, Huddinge University Hospital, Stockholm, Sweden.
• Prof Erik Stâlberg, Dept of Clinical Neurophysiology, Uppsala, Sweden.
• Prof Marianne de Visser, Dept of Neurology, Academic Medical Centre, University of Amsterdam, The Nederlands.
• Dr Josef Opara, Repty Rehab Centre, Poland.
• Prof Karl- Heinz Mauritz, Dept of Neurol Rehabilitation, Free University, Berlin, Germany.

Recently we have learned that this Task Force was set up in 2003 by the European Federation of Neurological Societies (EFNS) with the objectives stated above.

The EFNS is an organisation that unites and supports neurologists across the whole of Europe. Currently 40 European national neurological societies are registered members of the EFNS, which represents more than 12,000 European neurologists.

Jim.

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Interesting Website … Providing Website Accessibility and Accessible Information for People with Disabilities: www.ableaccess.org

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News from the office …

When Jim mentions that I’ve been ‘working away like mad’ on the Survey, he’s not joking. At times, it seems like it’s almost taken over my life! I’ve even been dreaming about it (as opposed to my usual dream of scoring the winning goal against England).

Having completed the Survey Report we passed it to the Designer and checked then re-checked it about a million times, looking for spelling errors, errors in tables, design errors, correct page numbering, in fact everything you can imagine.

No, we didn’t check it a million times – we checked it a zillion times! Which is why I was stunned to notice, literally, as I was about to sign the final proof copy to instruct the printers to print, that our address was wrong and had been wrong since the beginning. And, we’d never noticed!

The decision to print a Summary Report came very late in the day and added a whole new level of excitement to the project. However, we managed to find someone to put this together for us and our designer and printer were able to accommodate the tight deadlines.

I’ve mentioned ‘we’ in most of the above and I would like to pay tribute to the work that John McFarlane has done in getting us to where we are. Not only did John take on the task, at very short notice, of writing the whole report but he has slaved along beside me on the corrections, the changes, the amendments, the deletions, the whole checking process. Added to that, his advice and assistance has been invaluable and, really, without him, we would not have a Survey Report.

News from the office, apart from the all-consuming Survey, is that the Carmichael Centre is being re-painted and, at some stage, probably in February, we will have to vacate our offices for about a week. We will have to pack up and remove everything from the office and I mean EVERYTHING!

However, as Jim mentioned, Victor is now working with us on a six- month contract. I’m also very pleased to welcome Carmel Clarke, who is our new CE worker and who, I think, is still in shock.

I’m keen to start looking at the possibility of setting up local groups around the country to meet up on, roughly, a monthly basis in a hotel or lounge, along the lines of the very successful Bray group, which you’ll have read about. If anyone out there feels they have the energy to get something like this going, no matter what the location, I’d appreciate a call or an email to discuss it. I’ll help in every way possible to support you.

Apart from that, it’s all quiet here.

Anthony

(We are all looking forward to the Survey Report, and yes, Anthony, we will refrain from pointing out any typos! Editor)

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Accessible Holidays ...

(first published on website www.ms-therapy.ie)

John Geraty whose firm, Accessible Holidays, has brought the idea of a break from it all a step clearer to those with disability for whom holidays available are too much like obstacle courses.

It was in June, 1995, that John Geraty set up Accessible Holidays. There had been a lot of talk of making everything more accessible. But nobody seemed to think of holidays.

From his own experience of disability he knew just how important holidays are. "You get caught in a routine, a rut, not of your own making", he says. "For everyone, and especially a disabled person, it’s very important to have something to look forward to."

A fortnight in the sun can be as good as any therapy: it’s a known fact that lack of sunlight can cause depression as in Seasonal Affective Depression. This doesn’t affect just the disabled person: it’s good for family and carers as well.

A chain is only as strong as its weakest link. When it comes to organising wheelchair holidays, there’s no use arriving at the airport and then finding that there is no suitable transport to take you to the hotel or apartment complex, however wheelchair friendly that may be.

In some of the places John has been there were excellent mobility facilities, but the bathroom was fitted with a bath instead of a shower, so there was no way of using it. The designers hadn’t thought things through the whole way - probably because they hadn’t consulted a wheelchair user when they were doing the design. Like many other wheelchair users, John condemns this attitude as arrogance. One example comes to mind. A certain airline didn’t heed normal procedure and allow a wheelchair passenger to board first, and give them an aisle seat. As a result there was a great deal of confusion and a half- hour delay, which could have been avoided if everyone was prepared to listen in the first place.

"Formerly the rest of the family flew off and maybe there was a nice postcard with the familiar message of Wishing You Were Here. But if the holiday is properly organised, everyone can go together, and there are many benefits."

For a wheelchair holiday, John lists three key ingredients:

• Direct flights
• Adapted Bedrooms
• Support services, like adapted minibuses for transfer to airport, and for excursions.

"I can arrange this. I have the agencies," he says. So if a guest needs simple things like a shower-chair, there are people on hand who understand and who can supply the item without making a big deal of it.

So far, he has three destinations: Tenerife, Majorca and Cyprus. Marysol near Los Cristianos is very good. It has a fully equipped gymnasium, sauna and treatment centre. There are three swimming pools, one heated to 91 degrees F. The pools have hoist and ramp to facilitate access. The first question everyone asks is: "Have you been there yourself?" And, says John, "you have to put your hand on your heart and say ‘Yes’." He insists on doing a telephone interview with all customers, to make sure everyone understands exactly what is required.

He describes it as an individual service, tailor- made for you - not the travel agent. For instance, if it’s a family holiday, Majorca is better for children since there are many organised activities to keep them occupied. For a couple on their own, Cyprus or Tenerife is probably a better option, and Tenerife offers direct flights all year round, so there’s no worry about having to go on one special date.

In Cyprus, the destination is Larnika. It does offer day trips to Egypt, and trips to the Holy Land were once available: maybe in a few years they could be feasible again. John is also investigating other parts of Cyprus, but he won’t offer them unless he is fully satisfied they can guarantee a hassle- free holiday. So far, the demand has been for sun holidays. Both Paris and Prague offer direct flights, and both are wonderful cities, full of places to see. (Both have cobbled streets and some steep slopes too). So they offer possibilities. To date he has had more than 200 clients and many repeat bookings - and that’s the highest praise you can get.

Accessible Holidays

Holiday Co-ordinator: John Geraty 9 Shelton Grove, Kimmage Road West, Dublin 12, Ireland
Tel: (01) 455 5675
E- mail: jp_geraty@hotmail.com

Tailor- made Holiday for Disabled People to Tenerife, Majorca and Cyprus Holiday

Package Includes: Airport assistance and airport transfers in an adapted minibus and accessible hotel accommodation. Medical equipment and services also available

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Post Polio Syndrome Recognised by European Parliament …

(First printed in the Lancet—December 2003, and reprinted with kind permission).

Representatives of patients with Post Polio Syndrome (PPS) gathered on Nov. 12th at the European Parliament in Brussels to bring this poorly understood disorder to the attention of health professionals and policy makers. At the meeting - which was supported by 20 members of the European Parliament - PPS organisations agreed to create a European Polio Union (EPU) with the aim of obtaining recognition and funding from the European Parliament and Commission. There is thought to be around 250,000 patients with PPS in Europe and 20 million worldwide.

Over the last few years several attempts have been made to put PPS on the European Political Agenda, but these requests have not resulted in specific actions so far, says Johann Bijttebier, chairman of the Belgian PPS Association. For this reason, he says, national organisations have had to act mostly on their own.

Although the WHO declared in June that Europe was free of Poliomyelitis, “the other side of the coin is that there are very few health professional practicing today who have seen acute poliomyelitis” says Bijttebier. “Therefore” he argues “it is vitally important to raise awareness at every opportunity”. Jim Costello - the chairman of the Irish PPS group - the only EU country where PPS associations receive public funds - says “our mission is to create awareness and provide information regarding PPS among both Polio Survivors and the wider medical profession”.

The delegates agreed that a “comprehensive evaluation” of potential PPS patients should include a detailed clinical history and medical examination, laboratory tests, nerve-conduction studies, high-resolution MRI, pulmonary function tests, and sleep studies. However, Elizabeth Farbu, (Department of Neurology, Haukeland University Hospital, Bergen, Norway) notes that PPS is a clinical diagnosis without any specific bio-chemical or physiological marker. “Hence the diagnosis requires rigid criteria from a systematic clinical examination as most symptoms reported by polio patients are non-specific and common in an aging population”. The next meeting of the EPU will take place in early June 2004.

Xavier Bosch

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Letter to the Editor …

The "Cold Foot/Leg" cure:

For about the past 6 years I have been suffering from a severe deep cold pain in my foot and ankle. In the last 2 years it was coming up the outside of my leg through my knee almost as far as my hip.

May I, at this stage, say I had polio when I was two and a half years old around 1947/8. Although I came out of it pretty well, it affected my left foot and leg. I am now suffering from post polio syndrome—fatigue and weakening of my limbs and muscles.

Now back to the cold foot/leg. It has been a terrible problem. Even in warm climates and when my body was warm, my foot was freezing with a deep pain. It happened especially when my foot was hanging down e.g. sitting in a chair. When I got up and walked the pain generally went after a few minutes.

I NOW HAVE A CURE AND THE COLD PAIN HAS GONE. My husband bought me magnetic therapy plasters from the chemist. I placed about 6 all around the cold ankle area and I did NOT have a very good response. Now I stick ONE on the inside of my ankle and THE COLD PAIN HAS GONE COMPLETELY.I am not sure how it is working.

Perhaps it is jolting the circulation into action. I am a new woman!

The plasters, available from chemists, are in a box of 10 and cost E6.65. They are a Magnohealth product by Hoopers. If, after a few days, the plaster comes unstuck, I just put another ordinary plaster over it to keep the magnet in place.

I am writing this article sitting down. I am wearing a pair of sandals without socks and my foot and leg are WARM. Of course I have the magnetic therapy plaster on. It is a miracle.

Nuala Harnett—Post Polio Support Group Member

(We would be interested to hear from anyone else who has found success with magnet therapy or any other therapy that works for them, just phone the office - Editor)

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Main Social Welfare Improvements and Rates of Payment—Budget 2004 …

(Pressure of space precludes me from publishing all the changes made, I have selected the ones which I feel will be of benefit to the majority of our members. A full list may be obtained from any Comhairle office or Citizen’s Information Centre - Editor)

• €10 minimum increase in all weekly Social Welfare payments
• €11.50 per week increase for Widows & Widowers aged 66 and over on Contributory Pensions
• €28 per week increase in Family Income Supplement Thresholds
• €100 increase in Respite Care Grant. Increase in weekly Income disregards for Carer's Allowance of €40 (single) and €80 (couple)
• All weekly increases effective from January 2004

INCREASES

Personal Rates

Increase of €10 per week for recipients of the following payments:

• Old age pension.
• Retirement Pension.
• Invalidity Pension.
• Death Benefit.

(The above increases apply to full rate payments and there are proportionate increases for recipients of reduced rate contributory pensions.)

• fWidows, Widowers and Women in receipt of Deserted Wife's Benefit aged under 66.
• Disablement Pension
• Unemployment Benefit /Assistance * Disability Benefit / Allowance
• Blind Pension
• Pre-Retirement Allowance
• Farm Assist
• One Parent Family Payment
• Carer's Benefit / Allowance
• Constant Attendance Allowance
• Supplementary Welfare Allowance (January 2004)
• Increase of €11.50 per week for widows and widowers aged 66 and over on Widow's /Widower's (Contributory) Pension and for women getting Deserted Wife's Benefit who are aged 66 and over, bringing these payments to the same rate as Old Age (Contributory) Pension. (January 2004)

Qualified Adult Allowances

Increase of €7.70 per week in Qualified Adult Allowance for Old Age (Contributory) Pension and Retirement Pension where the qualified adult is aged 66 or over.

Increase of €6.70 per week in Qualified Adult Allowance for Old Age (Contributory) Pension and Retirement Pension where the qualified adult is under age 66.

Increase of €6.60 per week in Qualified Adult Allowance for all recipients of Old Age (Non-Contributory) Pension.

Increase of €16.10 per week in Qualified Adult Allowance for Invalidity Pension where the qualified adult is aged 66 or over.

Increase of €7.10 per week in Qualified Adult Allowance for Invalidity Pension where the qualified adult is under age 66.

Increase of €6.60 per week in Qualified Adult Allowance for all recipients of the Blind Person's Pension.

Increase of €6.60 per week for all other qualified adult payments.

These rates apply to full rate qualified adult allowances with proportionate increases for people on reduced payments.

(All Qualified Adult Allowance increases from January 2004)

Carers

Increase of €10 per week for recipients of Carer's Benefit or Allowance
(January 2004)

Improvements in the means test for Carer's Allowance increasing the weekly income disregard by €40 per week for single people and €80 per week for couples bringing the disregards to €250 and €500 per week respectively.
(April 2004)

Respite Care Grant increased by €100 to €835 from €735. Carers looking after more than one person will receive a grant of €1,670.
(June 2004)

Pensioners

Increase of €3 to €26 per week in the Rent/Mortgage Interest Supplement disregard.
(January 2004)

Special increase in the Death Benefit Pension to €173.70 per week for recipients aged 80 or over.
(May 2004)

OTHER IMPROVEMENTS

Improvements to After Death Payments.
(June 2004)

Qualified Adult Allowances

Upper income ceiling for tapered rates in respect of qualified adults to be increased from €203.16 per week to €210 per week.
(January 2004)

Widow and Widower's

€200 increase in Widowed Parent Grant, from €2,500 to €2,700.
(Budget Day)

Extend entitlement for five years to Widow/er's Non-Contributory Pension where a recipient aged 66 and over takes up residence in Northern Ireland.
(April 2004)

Free Travel

Extend the Free Travel Companion Pass to recipients of Unemployability Supplement who are currently entitled to a standard Free Travel Pass.
(April 2004)

CHANGES IN PRSI

Employees

Earnings ceiling for PRSI increased by €1,740 from €40,420 to €42,160 per year.
(January 2004)

Earnings ceiling for PRSI increased by €1,740 from €40,420 to €42,160 per year.
(January 2004)

SCHEDULE FOR INCREASES

January

All FIS customers will receive their increase in full from the beginning of January.

Customers on short-term weekly payments (mainly Unemployment Benefit/Assistance, Farm Assist, Disability Benefit, Carer's Benefit, and Supplementary Welfare Allowance) will receive their increase in full from their first pay-day in January.

Customers on long-term weekly payments who are paid by electronic methods through Post Offices and Banks will receive their increase in full from their first pay-day in January.

February

Long-term customers on book payments will receive their increase in mid-February backdated to January. In some cases (such as Disability Allowance and Old Age Pensions) an advance payment to end-March will also be paid to those customers whose books are due for renewal at the beginning of April.

A Book Review …

Voices From the Edge

Edited by Steve Daunt.
Illustrated by Sean Hamil.

Typeset and Graphic Design, The Workhouse, Peter Kearny, John Owens,

Published by Forum of People With Disability,

21 Hill Street, Dublin. 1 (from where it can be obtained).

Price €6.99.

This book was conceived as part of Ireland’s celebration of the Year of the Disabled. The aim being to give value to the experience of being disabled people in Ireland. It does that!

It is a collection of stories and interviews with people, as the title suggests, on the edge. Some relate their experiences of inclusion, or more often exclusion, as they try to live out their lives. Some have a physical, some a sensory, and some a hidden disability. Some have a well known, some a little known disability. It does not seem to matter as the barriers that exclude are not that different whatever the category or type of disability.

The stories are told with honesty, complete lack of embarrassment or a desire to hide things, others would hesitate to publish, and with a touch of humour. What would the world be like if disabled people were denied a sense of humour?

The telling is in the words of the writer, evidently not edited down or out, which gives the book vibrancy.

One of the facts that struck me greatly was the resilience of the human spirit, the accommodation of such ‘lack of understanding’ by others in relation to disability. Also one can see the height attained, educationally, socially and spiritually, in spite of the odds against with which the disabled were pitted. Yet there is not a word calling out an expression of ‘pity me’.

The artist’s aim to capture the strongest and most prominent image from each story, while maintaining an uniform style, has been achieved with flair. One can read, laugh, cry and feel an absorbing empathy with who shared their stories in this book. It contains the experiences of three Polio Survivors.

Joan Bradley

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.

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(Editor’s Note: While this is indeed a very interesting study, Dr. Orla Hardiman has recently expressed her reservations to us in regards to its benefits. the Post Polio Support Group strongly recommends that you always be guided by your doctor in the matter of therapy, medication and food supplements. DO NOT SELF-MEDICATE.)

Carnitine Studies …

(Reprinted with kind permission of Post Polio Network of Western Australia)

We have always been told that polio, as an infectious disease, cannot be passed on to our children. Findings by the WA Polio Clinic indicate - not that the polio can be passed on, but … that some of the problems we know as the Late Effects of Polio, can and may be affecting a number of our descendants.

This was brought to our attention a few years ago by some of our members who were doing well on carnitine supplementation themselves, so thought they would try it on a son or daughter who was tired all the time and maybe had muscle pain too. Carnitine seemed to help their children also. When we started to do blood carnitine levels on the children of Polio Survivors with these problems, we found that their levels were often even worse than the levels of their polio parent and grandchildren even lower again!

Low carnitine levels in muscle and blood give:

• Fatigue
• Muscle Weakness
• Muscle Pain
• Lack of Endurance

So does Post Polio Syndrome. Is this a coincidence or not?

At the Polio Clinic in Western Australia, we have been investigating carnitine in conjunction with post polio since 1994. We have been looking at carnitine levels in the blood since 1996. We have found that often Polio Survivors have levels in the lower limits of normal or below normal. Over 250 WA Polio Survivors have found an improvement in symptoms, I.e. much less fatigue, pain, and more strength, stability and endurance, when they take a carnitine supplement and eat more red meat, I.e. every day. We have noted that when people feel better, their carnitine blood levels are now at the top of the normal range.

Carnitine is an amino acid (I.e. part of protein) that is found in our diet, primarily in red meat. Avocado is the only vegetable source that gives much carnitine.

It is likely that Polio Survivors function better with higher serum levels to enable faster replenishment of cell levels, particularly during exercise to forestall the “hitting the wall” symptoms common in post polio. (N.B. Just walking and regular daily activities can be fatiguing for some Polio Survivors).

The main storage of canritine in the body is in muscle cells and polio survivors have lost muscle due to polio, so, in fact, are likely to have reduced storage capacity on a daily basis.

Our bodies make 25% of our carnitine requirements. The other 75% we should get from our diet. We have found that the amount often needed by polio survivors is the equivalent of from 1 kg—5 kg of steak per day, an amount impossible to eat, so supplementation is the only other answer - I.e. 500 mg—2500 mg. This is best taken as a single dose as soon as you get up in the morning. An extra 250 mg can be taken immediately prior to more strenuous activity if needed, e.g. golf, physio, shopping (if these normally wear you out.)

For further information contact:

Tessa Jupp RN
Post Polio Network of Western Australia
PO Box 257
Subiaco
WA 6904.
EMAIL: poliowa@upnaway.com.au

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Is Your Name on the National Physical and Sensory Disability Database? ...

Do you need services such as Physiotherapy, Occupational Therapy, Speech and Language, Technical Aids and Equipment, Day & Respite Services, Home Help?

?? Do you have an ongoing condition that is physical or sensory?

(Physical refers to reduced mobility, Arthritis, Breathing/Chest Disorders, Bone/Joint or Heart Complaints, Polio etc. Sensory refers to seeing and hearing).

?? Are you less than 66 years of age?
?? Are you receiving, or in need of a specialised service from a Health Board?

It is very important that you are registered on the National Physical and Sensory Database. The information on the NPSDD is what the Health Boards use to forecast their budgets for the next five years. If you are not registered, please contact Post Polio Support Group head office or your local Health Board for registration form and get registered as soon as possible.

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Listen …

When I ask you to listen to me
And you start giving me advice
You have not done what I asked.
When I ask you to listen to me
And you begin to tell me why I shouldn’t feel that way
You are trampling on my feelings.
When I ask you to listen to me
And you feel you have to do something to solve my problem
You have failed me, strange as that may seem.
Listen! All I asked was that you listen,
Not talk or do … just hear me.
Advice is cheap
And I can do for myself; I am not helpless.
Maybe discouraged and faltering, but not helpless.
When you do something for me that I can and need to do for myself
You contribute to my fear and weakness.
But, when you accept as a simple fact that I do feel what I feel,
No matter how irrational, then I can quit trying to convince you,
And start to get about the business of understanding what’s behind this irrational feeling.
And when that’s clear, the answers are obvious and I don’t need advice.
Irrational feelings make sense when we understand what’s behind them.
So, please listen and hear me. And if you want to talk, wait a minute for your turn, and I’ll listen to you.
Anonymous

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Regional News …

Members in the Western and North Western Health Board Regions are all geared up for their “Time Out For Your Self” week-end, which will take place in the Lough Allen Hotel and Spa from 16th to 18th April next.

This week-end will focus on Self Discovery, Self Expression and Self Soothing through use of Creative Media, and will be facilitated by Psychotherapist, Anne O’Connell. We will also have the use of the Spa (which is disabled-friendly), and aromatherapy sessions may be booked at a special rate. We hope have an OT with us on Friday evening to answer any queries re housing grants, etc.

Spouse/partner/family members are also welcome to take part in this weekend. There has been a great response, and the week-end is booked out as we speak, but if you would like to put your name on a waiting list, in case there is a cancellation, please phone the office.

 

Christmas Card Sales and Collections went on in all Regions during the months of November/ December—many thanks to all members and their families/friends who helped us out with this fund-raising effort.

 

The Southern Health Board Region have news of a grant specifically for aids and appliances which is to be used for non-medical card holders under 65 years of age. More details from Maureen O’Sullivan in Cork.

 

If anyone would like to get involved in setting up local meetings on a monthly or two- monthly basis, please contact your regional rep (names and addresses on the inside front page) or the office, and we will be happy to assist.

 

If you have any item you would like included in the newsletter, please send it on to me, and I will be glad to publish it in the next Newsletter. Don’t forget, this is your Newsletter and input from members is much appreciated. - Editor.

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Fund-raising News …

We have been finalising the figures for the monies received from events held in 2003, and they are quite satisfactory. The amounts received so far are as follows:

Dublin and Cork Mini-Marathon: €10,500

Raffle: (€ 7,400 less €800 expenses) €6,600

Christmas Cards and Collections: €13,500

TOTAL: €30,600

Many thanks to everyone who took part in the sale of Christmas Cards and Collections - it was much appreciated. Great credit is due to Philo Mullaney and her team for organisation of this event. It is a wonder Philo’s family saw her all in November, as she seemed to be at every venue, all over the country! Such a job!

There is still some money due from Christmas Cards, so if anyone still has Christmas Card money to send in to the office, please do so as soon as possible.

We also have a new helper in the Carlow area— Simon Ronan, who has been helping us by raising money from events in his locality. Anybody else who would be willing to do something similar, should contact any of the Board members or the office.

Our Corporate Fund Raising has slowed down in the latter half of 2003, but we will be starting a new drive in the next few months.

The next very important event, is the Dublin Women’s Mini-Marathon. I know that this doesn't take place until MONDAY 7th JUNE 2004 (BANK HOLIDAY WEEKEND), but it is essential that we have as many participants as possible. In the first year we participated we had 32 entries raising €6,000, and last year we had 50 entrants raising €9,000, so this year we want to get many more people running/walking/rolling in aid of the Post Polio Support Group. Don’t forget you don’t have to run—some people only walk a short distance, or you could of course get someone to push you in the wheelchair. It is a great day out and you meet lots of people. Please try to get your family, friends and neighbours to partake on our behalf—last year a number of people got their employers to sponsor them—a great idea! It is important to ask early before they agree to partake for another cause.

For full details of entry forms and sponsorship cards, contact Anne Burns at 01-4534150.

Hugh Hamilton—Fundraising

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