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The Survivor Newsletter: Summer 2006

OUTGOING CHAIRPERSON’S UPDATE

This is my last Chairperson’s Newsletter Update for the Group. I have retired as Chairperson at the June Board Meeting as is laid down in the revised rules of our organisation. I know it has been a great honour to have had this key position within the Group and that I have been privileged to work with my colleagues and the Group at a key time in its development. I wish to express my sincere gratitude to all my colleagues, past and present for their support to me. However, I am not departing altogether, as I have been re-elected at the AGM to the Board.

I congratulate, and will of course support Hugh Hamilton, our new Chairperson in whatever manner he wishes, and my colleagues on the Board to the best of my ability. In this respect, I wish to welcome our 2 new Board Members, Seamus O’Cinnéide and Hugh Weir who were elected at the AGM. I know that they have wide experience and knowledge and will be of great assistance to the work of the Group. We are working along with the Health Service Executive to improve supports for Polio Survivors. We value the statutory funding that we are given covering all the Group administrative costs, and allowing the Group to provide certain support programmes. However, our fundraising activities throughout the year are vital to the work of our Group, as the rules governing HSE funding do not allow us the scope and freedom we require to respond quickly and flexibly in certain circumstances to the needs of Survivors, particularly in emergency situations. So any support with fundraising you can give, or obtain from others, is of great assistance! We are expanding our efforts to contact all Polio Survivors and provide appropriate, effective service delivery to them. In this respect, I would ask all members to continue to reach out to all those Polio Survivors who are not in touch with the Group, and we will support your work where we can. We have actively engaged with the media at National level and, perhaps more importantly, many of you have spoken on local radio. We were extremely pleased with the coverage on TV, Radio and the Newspapers, which we received concerning our events in Cork in May, which was due to the participation/work of a number of Cork members, (Thank You to them all), and has heightened awareness of our work, and resulted in many new members joining the Group.

Some of you tell us your doctor has not much experience of dealing with the Late Effects of Polio. We are presently working with the various medical professionals, on whom Polio Survivors rely on for their care, to improve the information material on the condition available to them at Primary Care level. We are also constantly reviewing ways of improving our services to Survivors, and we are always open to consider suggestions from members in this respect. So don’t be shy — do contact any Board Member or the Office if you have any suggestions you wish to contribute.

I do hope that all members are able to get a break this year and possibly enjoy some fine weather. Hopefully, it will be good throughout most of the summer.

Jim

FUNDRAISING

The first half of 2006 has been a busy time for fundraising. At the start of the year we received very good contributions from two foundations who have always been very supportive of us in recent years, and to whom we are very grateful – if any members know of any other foundations who would be willing to support us, please let us know.

We then concentrated our efforts on Cork for the 50th anniversary of the 1956 epidemic. The first thing that occurred was that City Life Insurance, a leading Cork financial services company, got 10 of their staff to run in the Ballycotton 10 (a 10 mile race) in March, all of whom got sponsorship in aid of PPSG. It was very successful and great fun. We then had a fundraising breakfast the day before the AGM, also in Cork. This was very well attended with over 90 people supporting us, and apart from the financial benefits, we got great exposure and media coverage (Jim is becoming quite a TV personality!). As ever, Evelyn Wainwright did great work in organising cash collections in various centres in county Cork and is continuing to do so throughout the year. (Evelyn – thank you so much). Barbara McDonagh is having a street collection in Galway City on 14th July and would welcome volunteers to help even for an hour or two. Contact Barbara at 091- 593664 or email babamcdonagh@eircom.net.

This month we again participated in the Dublin women’s mini marathon – thanks to the hard work of Anne Burns. About 60 people participated on our behalf and, as in previous years, the weather was beautiful, so everybody had a ball. So far, the financial returns are dribbling in, so we would ask all to return their sponsorship cards (and the money) as soon as possible. Of course, the Cork (24th September) and Limerick (October) women’s mini marathons will be supporting us, so please would anybody who would like to participate please let us know by contacting Evelyn Wainwright at 086-8829267/021-4847313 or email evelyn99911@hotmail.com or Tom Clifford at 061-375115 or email tomclifford1@eircom.net.

We will be holding a raffle with some excellent prizes in the autumn and will be contacting you about this later.

NEW LEGISLATION FOR PEOPLE WITH DISABILITIES WHEN TRAVELLING BY AIR

[Taken from the February 2006 issue of Able Magazine]

by a central national body expected to be the Civil Aviation Authority in the UK. The key factor of the legislation is that disabled people won’t be refused transport on the grounds of their disability. With 48 hour advance warning, airports must provide assistance to disabled people. This could be assistance at check-in, boarding, or disembarking from aircraft, for example, and clients will not be charged for this assistance. Even if disabled users are unable to provide 48 hour advance warning, or "pre-notification" as it was called in the legislation, airports will still have to make their best efforts to provide as full and accessible a service as possible.

With the onset of the legislation, we’ll also see essential safety information being provided n alternative format by law - such as evacuation procedures in Braille or audio CD. And from now on, airlines and airports are required to make their websites and booking processes more accessible. The new legislation also allows assistance dogs to be carried on long haul flights.

Rather than applying only to ‘persons of reduced mobility; as with previous guidelines, the law will cover people with disabilities including hearing impairment, visual impairment and people with learning disabilities, Other changes included adapting phrases such as "special attention" to "appropriate attention" in order to avoid patronising or causing offence.

How will we pay for these changes? The cost will be spread across ticket prices and airline op- The European Parliament has recently adopted legislation to give disabled people new rights when travelling by air. Able magazine investigated this welcome change, asking how much impact it will have on the lives of millions of disabled travellers across Europe.

There have been plenty of wellreported incidents involving the maltreatment of disabled people on flights and at airports over the past few years. As air travel becomes cheaper and more and more destinations open up to travellers, why should people with disabilities be excluded from enjoying the four corners of the globe?

A major legislative breakthrough has taken place which should mean that disabled people will be able to fly freely and without discrimination across Europe within the next two years. The European Parliament has voted in favour of legislation which will see passengers free to travel without fear of discrimination and additional charges.

Under this new EU legislation the airports have overall responsibility for ensuring that there is a workable and efficient system in their airports so no longer will airlines be entirely From now on, airlines buying in new aircraft will be obliged to ensure they are accessible which means that disability groups should be involved in influencing airline operators choices.

Airports will now have a duty to ensure that from the point of departure to the point of arrival, disabled travellers will be transported ‘seamlessly.’ This will be overseen by the airport management and also erators, so we can expect to see around fifty pence added to the cost of every ticket to ensure that disabled people are no longer mal treated when trying to travel — doesn’t seem like too high a price to pay, does it?

Not only will the new legislation cater for all, with it being passed EUwide, it also means we can enjoy accessible air travel wherever we choose to go within Europe.

So here’s hoping you’ll see some changes the next time you jet off on your summer holidays! If you have had any ‘flying experiences’ – good or bad – do let us know

Editor

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SOME TRAVEL TIPS

• If travelling with a powered wheelchair or scooter, find out whether your specific battery type is permitted on board. Attach directions for removing your batteries, so if they need to be removed, it will be done correctly.
• If your powered wheelchair is operated with a joystick, see if it can be removed for safekeeping before the wheelchair is handed over to baggage staff. It could get damaged in transit.
• When checking in, check with the staff that the same assistance you require for departure will also be available at your destination.

taken from www.assistireland.ie

 

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REGIONAL ROUNDUP

CORK GROUP

Convenor: Evelyn Wainwright
Tel/Fax: 021 4847313
Mobile: 086 8829267
Email: evelyn99911@hotmail.com
Venue: Vienna Woods Hotel
Area: Cork (City and County) and Kerry
Meetings: Meets 2nd Wednesday of every second month.
Meeting dates:
8th July (summer outing),
9th Sept (Regional Respite Day),
8th November.

The summer outing is arranged for Fota on the 8th of July (weather permitting) and then on to the Elm Tree for a meal

The Cork Mini Marathon will take place on the 24th of September and entry forms are now in the evening echo a few times in the week so please look out for them if you wish to take part.

The Southern Region ‘Chill Out Day’ will take place on 9th September in St. Dominics, Ennismore. Details later.

Provisional date for Christmas dinner is Wednesday the 29th November at the Greyhound Track. If you live in this area and would like to attend these meetings, please give Evelyn a call.

 

ATHLONE/MIDLANDS GROUP

Convenor: Sean Mulligan
Mobile: 087 2053821
Venue: Creggan Court Hotel
Area: Westmeath, Roscommon

Meets twice yearly.
The provisional date for the Annual Dinner is 7th October in The Bounty, Du Barry Park, Athlone.

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

 

BRAY GROUP

Convenor: Belinda Redmond
Tel/Fax: 01 2860251
Email: redmond286@eircom.net
Venue: Esplanade Hotel, Bray.
Areas: North Wicklow, South Dublin.
Meetings: Meets first Tuesday of every month from March to October.
Meeting Dates:
4th July 2006
1st August 2006
5th September 2006
3rd October 2006

The Bray group will be organising a summer outing with the Enniscorthy group.

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

LIMERICK GROUP

Convenor: Tom Clifford
Tel: 061 375115
Email: tomclifford1@eircom.net
Venue: Kilmurray Lodge Hotel, Limerick.
Areas: Limerick; Clare; N. Tipperary
Meeting dates: 6 September

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

GALWAY GROUP

Convenor: Bridie McMahon
Tel: 094 9540285
Mobile: 087 9580567
Email: sbmcmahon70@eircom.net
Venue: Menlo Park Hotel, Galway
Meetings: Meets on the first Wednesday of every second month from March to September
Meeting dates:
5th July

6th September

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

ENNISCORTHY GROUP

Convenor: Ann O’Kelly Guerin
Tel: 053 32633 or Povl Thim
055 218 57
Email: aguerin914@hotmail.com
Venue: Riverside Hotel, Enniscorthy
Areas: South Wicklow, Wexford, Waterford.
Meetings: First Monday of every month
Meeting dates:
3rd July,
7th August
4th September.
This group are arranging a summer outing with the Bray group.
If you live in this area and would like to attend these meetings, please give Ann or Povl a call.

NEWBRIDGE GROUP

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

PORTLAOISE GROUP

Convenor: Paddy Fitzpatrick
Tel: 0505 46738
Mobile: 086 396 1131
Venue: Heritage Hotel, Portlaoise
Areas: Offaly, Laois, Kilkenny.
Meetings: First Tuesday of every second month
Meeting Dates:
4th July 2006
5th September 2006
7th November 2006

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

LETTERKENNY GROUP

Convenor: John Mangan
Tel: 074 9137465
Venue: Clanree Hotel, Letterkenny
Area: Donegal, Derry
Meetings: Not meeting at present.

If you wish to contact John Mangan, please do so at the phone number above.

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VODAFONE RING RING PHONE PROJECT

We are delighted to let you know that the leaders of the Ring Ring Phone Project will undertake a training week-end in late July and we hope to have the phone groups up and running by September. This project, which is generously funded by Vodafone, will consist of four groups of ten members (one in each HSE Region). The leader will undertake to phone each member in his/her group once a month and, with their permission, put them in contact with each other.

This project is suitable for those who are unable to attend social support meetings, due to lack of transport, mobility difficulties, and who would just like a chat with others who understand where they are coming from. Letters will be going out to all members shortly asking if you would like to take part in this project – and we are hoping for a good response.

We would hope that friendships among our members would be built up through this contact. Mobile phones will be provided and there will be free call credit between all members of each group for one year. There is already a Ring Ring Phone Project Group up and running in Cork and Kerry with Maureen O’Sullivan as the leader. This has proved to be very successful and thanks are due to Maureen for her lovely phone manner, which I am sure gives people a lift when they hear her on the other end of the phone.

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THE PPSG NEEDS YOUR HELP…

We are badly in need of people who would agree to be nominated to help us out in the following positions:

• Sub-Committee Members: Social Support, Fund-raising…
• Regional Representatives
• Social Support Convenors
• Ring Ring Phone Project Convenors

If you think you could make a contribution to any of these positions, or if any of your family members would be in a position to do so, or if you know of someone who would like to assist us, please let us know. It doesn’t matter what part of the country you are in, and you don’t need to have any special qualifications, just to be a caring person, a good listener, be able to see a job done well, and help us to put the Mission Statement of the PPSG into practice. The work is voluntary but the satisfaction is great! So ask yourself: Could I be of any help? If so, please let us know.

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DUBLIN CITY COUNCIL ABANDONS PLANS TO CHARGE DISABLED PEOPLE FOR PARKING

UPDATE

In the last issue of The Survivor, we reported that Dublin City Council was considering charging people with disabilities for car parking. However, the council has abandoned these after it emerged that it would cost ?7.5 million to replace the existing pay-and-display machines with ones suitable for use by people with disabilities.

The decision follows strong opposition by disability groups to the proposed change, which the council hoped would stop able-bodied people abusing the disabled parking permits system.

The change was proposed by the council’s former director of traffic Owen Keegan who said families of disabled people were misusing the free permits.

He said that in several cases families did not surrender the permits in the event of a disabled person’s death, but continued to use it on their own vehicles.

It had also emerged that permits were being stolen for use by ablebodied drivers, and clampers had reported commercial vehicles such as builders’ and roofers’ vans displaying disabled permits. The council put its proposals for change out to public consultation last December and received negative submissions from several disabilities groups who said any charges would significantly add to the cost of living of the disabled.

Groups also told the council that existing pay-and-display machines were not accessible to wheelchair users. The council estimated the cost of replacing the machines would be in the region of ?7.5 million.

The council’s traffic department said it has told the clamping company, Dublin Street Parking Services, that targeting vehicles illegally parked in disabled parking bays is a priority.

[Taken from The Irish Times]

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CHIP AND SIGNATURE

As we are all aware the trend is for all plastic cards to be CHIP & PIN. However how would you like to have to hand over your PIN to a stranger if you are getting petrol and can’t get into the station to complete the transaction yourself?

What the majority of disabled people do not realise it that CHIP & PIN is not mandatory. If you have a problem that means you cannot get to the verification machine, due to a disability of one kind or another, the card issuing authority, whether it be a bank or card company can and do issue CHIP & signature cards. They look exactly the same but when inserted do not require a PIN and force a "traditional" slip to be produced that can then be signed in the old way.

John McFarlane

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NEWS FROM THE HSE ON NEUROLOGY SERVICES

Ireland has the least number of consultant neurologists in Europe and PPSG, along with other groups has been lobbying for some time to have this recognised.

The HSE has recently confirmed that three new neurology units will commence development during 2006; in the Mid-west, North West and South East, with the appointment of three multidisciplinary teams. Each team is made up of Consultant Neurologists and support staff. According to the HSE, the new teams will have an impact on reducing the current inequities experienced by those living in the Mid West, North West and South East.

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"DWELL IN ME AS I DWELL IN YOU" JOHN 15.4.

Those words should raise the hair on the back of our heads (if we have any left) or raise goose pimples on our arms. Listen to them again. Speak them out loud in the quiet of your room. "Dwell in me as I dwell in you."

In one brief statement, Jesus was making available to his disciples the totality of Enlightenment that so many people in the East and in the West have sought since the beginning of time. God is inside us. ‘Dwell in me as I dwell in you."

Have you problems with insomnia? Well, here is something that may not rid you of your insomnia but it will help you to maximize your experience of insomnia. As you lie awake at night, become aware of your body and its total mystery. Feel the length and breadth of it and the spirit of life going through it. Don’t just think about it or you will miss the experience.

Don’t you know "We are the temple of the living God," an exasperated Paul wrote on one occasion (2.Cor. 6.16). The trouble is that we do know it. We Christians know too much. So much so that the great Danish philosopher, Kierkegaard, was driven to remark that Christians always cheat at exams because they know the answers before they even hear the questions. He was right. Our little Catechism was an encyclopedia of wisdom and enlightenment, but ultimately it meant little to us because it is seen as a book of ideas that we had to learn off by heart. In the end, we finished up with a spirituality that we had learnt off by heart.

You may not realise that even now. But I am becoming ever more aware of it. The biggest reason why we are not even excited by our knowing that Jesus lives inside our bodies is that it is just that … knowledge! We are over-burdened with knowledge. We know so much and experience so little. I know Jesus lives within me, but so what! So far, no one has spotted me jumping out of my wheelchair with excitement. It is a wonderful idea. I believe it is true and a reality and that’s about it. But one of these days you may well spot me jumping out of my wheelchair because I am now at least aware of a dilemma that confronts us all, even though few recognize it.

I would love you to become aware of it. This is our dilemma: how can we move beyond the idea of Presence into an experience of Presence? How can I experience the presence of Jesus within myself as a real presence and not just as an idea? Please don’t tell me, ‘by making an act of faith’, because that only compounds the dilemma by presenting me with another idea.

The good news is that I now see part of the answer. It is by focusing on my body, I come closest to experiencing the presence of Jesus. We need to become aware of our bodies during prayer: not just by thinking about them but feeling them, looking at them. Don’t be tempted to rush into prayer. Feel your body’s aches as you pray. Feel the chair. Grip your body at times and keep doing this for as long as it takes for you to become aware of God’s presence within that body. Let that become your prayer.

It will take time, weeks, months, perhaps years, but if you stick at it, your prayer will become exceptionally real.

I greet you with great joy. If there is one thing more than any other I want to share with all of you, who like myself live in broken bodies, it is to give you a taste of that joy you will start to feel when you begin to experience the presence of Jesus within your body and not just believe in it. Your body may be broken as Christ’s body was broken and hung out to dry, but it has a great future and a great present.

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ACCESS WATCH

THUMBS UP

NATIONAL STUD AND JAPANESE GARDEN.

There is no admission charge for wheelchairs as the Japanese Gardens are not completely accessible, but you can still get a feel for the place, the restaurant is excellent and it is a really enjoyable place to spend a few hours.

SHOPMOBILITY IS NOW AVAILABLE AT THE FOLLOWING LOCATIONS:

• Liffey Valley Shopping Centre, Dublin – accessed from the Green Car Park
• Dundrum Shopping Centre, Dublin – accessed from Red Car Park, Level 2M
• Mahon Point Centre, Cork – accessed from Enclosed Area Car Park, P6
• White Water Shopping Centre, Newbridge – accessed from Basement Car Park.

 

FEAR OF FALLS:

RISKS AND PRACTICAL STRATEGIES

[Reprinted from Post-Polio Health (formerly called Polio Network News) with permission of Post-Polio Health International (www.post-polio.org). Any further reproduction must have permission from copyright holder.]

When my students and I looked at falls in individuals with post-polio problems, the numbers were really staggering. About 85% of the participants in our study reported falling. Fear of falling was also a staggering and scary number – 95% of the individuals with post-polio. Another interesting fact was that many individuals who were nonambulatory and who were in wheelchairs also were afraid of falling.

What factors put you at risk for falling? Review the below to determine how many factors describe you. This short list is used for older adults, which some of us are, but can also be used by younger polio people. You may not experience some factors, yet experience others. And, some of them you may be able to change and some you may not. I’d like to expand on a few. Visual impairment: Recognize that your ability to adapt to the change in light decreases as you get older, and remember that fact when you walk into a very bright room or a very dark room. Also, conditions such as glaucoma, cataracts and macular degeneration increase your risk for falls.

Use of assistive devices: The issue with assistive devices is the proper use of them. For example, if the legs of your quad cane are in your pathway, as opposed to properly being towards the outside of your pathway, you are at risk for falling.

Decreased sensation in feet: Decreased sensation in your feet puts you more at risk for falling because you don’t know where your feet are. It may or may not be a result of post-polio. It could also be because you are diabetic.

Urinary incontinence: Nobody wants to talk about it, but if you are having to get up frequently in the middle of the night, that puts you more at risk for falling because you are not as alert and your pathway may not be well-lit.

Dizziness: Talk with your physician about any dizziness you may have because there are many, many causes of dizziness, including cardiac issues, blood pressure concerns, inner ear problems and medication issues. For example, psychotropic medications, and even cardiac medications, list dizziness as one of the side effects. Multiple medications: The red flag number is four. If you are on more than four medications, you are considered at risk for a fall. I am not saying stop your medication. Instead, I am saying go to your physician and talk about all of your medications. You certainly may need all of them, but there may be other kinds that won’t cause the side effect of dizziness.

Blood pressure decreases when standing: When this happens you will have a sensation of light headedness or dizziness. Discuss this with your physician, also. As I look at the list, I know I can check off several and I am not an “older adult” yet. Therefore, I need to look at what strategies I can do so I am less at risk for falling.

The fear of falling issue has many causes and you don’t have to fall to have a fear of falling. If you look at the diagram, there are many things that contribute to your FOF and, unfortunately, it’s a cycle. For example, it’s really difficult for me to walk outside if I am not using my crutch, or if it’s at the end of my workday. So, I make the choice not to go out with my friends or family and I stay home. Then, my friends and family stop asking me to go out because they know I always say no. With this restriction of my social activities, I possibly lose strength and because of the weakness, I lack coordination, which makes me more at risk for falling, and I continue this cycle. We, as polio survivors, have some power to intervene in this cycle and to make some changes. For example, do more difficult chores in the morning after a good night’s rest. Here are other strategies we all can use: Assess your home environment. Do a home safety check to be sure that you are rid of environmental hazards in your home. For example, get rid of clutter, do not use throw rugs, remove electrical cords in your path, use cordless phones, clear outdoor walkways, repair uneven walkways, use handrails, put a non-skid surface or reflective marking on steps, improve lighting, use nightlights, store frequently used items within easy reach, put grab bars in the bathroom, use a shower seat, and adjust the toilet, bed and chairs to the proper height. Assess yourself. Have you had annual vision and hearing examinations? Are your feet and toes pain-free? Do your shoes fit? Do they have flat, low, wide heels with non-skid soles? Do you avoid walking without your shoes and in your sock feet? Do you wear clothing that doesn’t drag? Have you had a physical to check for unstable/ low blood pressure, or to seek help in reducing frequent trips to the bathroom in the middle of the night, or to discuss with your physician if you are on more than four medications?

Know yourself and your post-polio syndrome problems. Pay attention to your body’s signals – pain, fatigue, time of day, level of activity for that day or the day before – only do “risky” tasks at times when you are at your best. If you don’t know your fatigue level during the day, I suggest you keep a log and record the time of day when you are having more difficulty and/or record a particular activity that makes you more fatigued. Be as active as you can be, given your post-polio symptoms. If you are able to exercise your feet and legs, do so. They are the key to good balance.

Take your time. Remember to move at speeds that are consistent with your energy and ability. Rushing to the phone is not worth a fall. They will call back or leave a message. Also, remember to have your cordless phone with you at all times.

Pay attention to changes in your health. DO NOT assume that every change in your health is related to post-polio. It may not be. Any new symptoms need to be appropriately investigated by your physician.

Seek expertise and education. In our survey results, less than one third of us as post-polio survivors seek the assistance of health care professionals and that concerns me as a polio survivor and a health professional. Health care professionals have a lot of information but you need to be willing to talk with them. If we don’t ask you the right question, tell us anyway. I will guarantee you as a physical therapist that our profession and the occupational therapists are trained to be very good listeners. Find professionals in your area who can assist you with appropriate exercises to improve your balance, the proper fitting of orthotics and assistive devices, a home assessment, a lesson on how to get up from a fall, and information about new adaptive equipment for the home.

Older adults are hesitant – and I think we can lump ourselves as people with post-polio in that group – to talk about fears but it is important that we do. Kristine Legters, PT, DSc, NCS received her doctor of science degree in neurologic physical therapy and is a polio survivor.

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POLIO STORIES

Those of you who were at the AGM will have met Nuala Harnett who has agreed to be the editor of our book of Polio stories.

Nuala got polio when she was two and a half. Her left leg was affected and after much physiotherapy and some surgery she walked pretty well for the next forty-five years. Then things started to happen. She found walking and standing more difficult and because she was playing a fair bit of tennis she was getting a lot of injuries, pains and pulled muscles. When she discovered she could not participate in sport or in anything that involved walking she started thinking of alternative activities. She has compiled two books – Party Pieces in the year 2000 and Party Pieces’ in 2005. Irish people love parties and singing but it was always difficult to remember the words or find new material, so this was how she got the idea. Indeed there was a great ‘session’ on the Saturday evening of the PPSG AGM in May, and Nuala’s book came into force big time. Rumour has it that the singing was so loud that it could be heard up on the 5th floor of the hotel.

She is really looking forward to the Polio Stories Book Project. She has already received some very interesting stories and hopes to receive many more in the near future. Noone need worry about grammar or spellings, etc. All she needs is THE STORY. If anything needs to be tidied up, she will do it. Also if you have any photos of old times, they would be a great addition to the book. She would be delighted to hear your story over the phone or come to your house if that is more convenient. Of course you can also write your story down and post it.

Polio Survivors all have a story to tell of their life with Polio – all great stories of courage and challenge, of separation and loss, of laughter and tears – of survival! If you would like to be included in this book, please contact:

Nuala Harnett
The Bungalow,
13 Ulverton Close,
Dalkey,
Co Dublin.
Tel: 01 2800661.
Email: harnett@iol.ie.

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SWIMMING WITH SOCKS ON

If you like to swim but are afraid of falling on wet floors – the answer is POOL SOCKS. These can be bought at any sports shop for about ?9. Tip: Unless you have very narrow feet, it is wise to get socks two sizes bigger than your normal size. If you are afraid of them flapping around and tripping you up, then machine sew around for your size and cut off the top. Magic, you feel quite secure on the wet floor and you can wear them into the pool as well.

BOOK OF MEMORIES

The Post Polio Support Group now has a beautiful leather bound Book of Memories, in which is inscribed the name, details and short tribute to our members who have passed away.

This book will be on display at every AGM and will serve as a fitting reminder of our members who have passed away. If you have a name you would like to have inscribed in the Book, please let us know. 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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WHAT IS ENERGY CONSERVATION ALL ABOUT?

Energy conservation can assist in reducing fatigue. Energy conservation means learning techniques to ensure a measured level of activity throughout your day without pushing beyond your present energy levels. Not all activities can be changed to reduce energy consumption but altering some will lead to a reduction in fatigue. The following guidelines may enable you to save energy during daily tasks, and so allowing you to distribute your energy to activities which are meaningful throughout the day.

THE MAIN PRINCIPLES OF ENERGY CONSERVATION ARE THE FOLLOWING:

• Balance rest and work. Regular short breaks during prolonged periods of activity increases the over all duration which you may have to continue to perform activities. Evaluation of the effectiveness of energy conservation has demonstrated, that regular rest periods during the day to prevent fatigue, increases the duration of daily physical ability.
• Be realistic about function activities. i.e. what activities are beyond my energy levels? Roles and related role duties may need reviewing.
• Activities and duties need prioritising. What do you want your limited energy resources for?
• Accepting help does not mean losing control.
• Off days do occur. Listen to your body – don’t argue with it.
• Plan ahead, in both short term (meal planning, social events, shopping, etc) and long term (holidays, etc).
• Store regular used items in accessible and convenient places.
• Don’t stand when you can sit. Standing requires at least 25% more energy than sitting, so tasks should be performed seated when possible.
• Use correct body positions. More energy is used to maintain poor postures as muscles have to work against the effect of gravity to maintain position.
• Avoid activities that cannot be stopped if they become too stressful. Energy conservation involves using your energy wisely throughout your day to day life.

ENERGY CONSERVATION TECHNIQUES ARE IMPORTANT FOR ANYONE WHO:

• Tires easily or experiences fatigue daily with or without exertion, and/or
• Have been advised to protect their joints.

THE PRINCIPLES OF ENERGY CONSERVATION INCLUDE:

• Time management & planning ahead.
• Limiting your workload everyday.
• Positioning of your body for comfort and not aggravating pain.
• Using correct body postures and positions when doing tasks.
• Organising your environment at home to help you.
• Letting your tools do the work.
• Rest and relaxation.

PRACTICAL ENERGY CONSERVATION TIPS TO HELP YOU AT HOME:

• Take frequent short rests lying down if possible.
• Do shopping over the phone/internet and have it delivered to the house.
• Have work surfaces at the right height where possible.
• Sit down as much as possible when doing tasks e.g. peeling vegetables.
• Store heavy items at a suitable height to avoid bending.
• Avoid repetitive movements that tire your joints, e.g. ironing, hovering.
• Keep stacks e.g. plates, bowls, cups on counter to avoid reaching or bending.
• Get plenty of sleep and use relaxation techniques that you like.
• Avoid doing unnecessary tasks at the hottest part of the day.
• Let dishes dry on racks.
• Avoid unnecessary ironing.
• Keep regularly used items within easy reach, if necessary have items for each room used, e.g. cleaning products.
• Keep scissors and knives sharp to make jobs easier.
• Use easy to manage clothing, e.g. Velcro, Pullovers etc.
• Only fill saucepans, mop buckets, kettles with amount of water necessary to avoid excessive lifting.
• Involve other members of household as much as possible with household chores.

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KNITTING FOR POLIO

We recently heard from Cilla Webster of the Post Polilo Network in South Africa. She is running the ‘KNIT/CROCHET FOR POLIO’ campaign to encourage families suffering from poverty to bring their children to clinics to be vaccinated. Although the vaccination is free in South Africa, the transport to the clinics isn’t. A knitted garment or blanket encourages those who live in poverty to bring their children to the clinic because they know when the child has been vaccinated they will receive something warm to wear, something they would otherwise not be able to afford.

In December 2005, Cilla received news that polio immunisation had gone up by 5% in the area, illustrating the success of the campaign. She would appreciate your participation in the KNIT/CROCHET FOR POLIO campaign – all you need to do is send a few balls of knitting wool to her postal address where it is used by volunteers to knit garments. She currently receives wool from American, Canadian, UK and Mauritian polio survivors.

An average of 200 illegal immigrants from Zimbabwe alone enter South Africa daily, however most have never been vaccinated unless they come from a country where the World Health Organisation and Rotary have done a mass vaccination programme.

Cilla’s postal address is:
Cilla Webster,
Post Polio Network,
P.O. Box 1155, Umkomaas, 4170,
KwaZula Natal, South Africa.
She is contactable on cilla.webster@scottburgh.co.za

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WORDS TRAPS

By Joan Bradley

It is the children that do it most, but we all do it to some extent. I am sure we have all experienced a child’s comment on – say our callipers or wheelchair or whatever makes us look different. "My granny got one of those and she died."

Or as I was told one day - "My mother got stitches in her belly and had to give up smoking". I am sure the stitches, in themselves, had nothing to do with it – or did they? The children do it with such truth and innocence, but if it was said by an adult it would be very discouraging to say the least. Taking it to its literal conclusion we might book in with the local undertaker.

We are all guilty of saying things that confuse others, nearly always unintentionally, but yet with far reaching effect. No matter what our disability, we are all different and even when we suffer from a similar disability; there is no two of us needing the same treatment or the same solution to our problems. So if we receive information from say, a peer, or some "expert" suggesting that we are about to die of our condition or be rendered totally incapacitated in a certain way because it happened to someone else; beware and cheer up.

Many years ago, when TB was the scourge in Ireland and often spread through a whole family, the following took place: There was a woman with two daughters and one got TB and died. When they arrived home from her funeral the mother said to the second girl, "Go to bed now Katy and wait for the Lord to call you." Katy did as she was told and stayed in bed until a new priest came to the parish. He decided that Katy was probably in perfect health, so he advised her to get out of bed. She did, and lived to a good old age Don’t believe all you are told, get a second or third opinion. Like Katy you may never suffer the affliction of others. And, by the same token, the treatment of others may not suit you at all.

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VOLUNTEERS REQUIRED FOR BEAUMONT RESEARCH

As part of the research study examining fatigue in polio survivors, I am looking for 40 healthy volunteers, 20 men and 20 women aged 45 to 75 years.

Volunteers must be in general good health, aged 45 to 75 years and must not have a history of (i) neurological conditions, (ii) inflammatory muscle or joint problems or (iii) unstable cardiac conditions or hypertension.

Individuals must be willing to attend Beaumont for a one-off assessment that will take 1-2 hours. They will get information about the muscle strength of their legs compared to an average person of their age.

I would hope that family or friends of the members of the PPSG might volunteer and therefore help in the research.

Anyone interested should call 01- 8092526 and leave their name and number.

Deirdre Fitzgerald, Physiotherapist

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ASKING FOR HELP: 5 REASONS WHY YOU SHOULD GET OVER IT!

[Reprinted with kind permission from Linda Wheeler Donahue, Professor Emeritus of Humanities, who is President of The Polio  Outreach of Connecticut USA and Editor of The Polio Messenger newsletter.]

The other day my able-bodied friend asked me why her companion, a polio survivor, finds it difficult to ask for help. I asked her to give me an example of this reluctance. She mentioned that the PPSer needs help lifting her scooter out of her vehicle when she arrives at work but will not ask for this vital assistance even though a coworker volunteered. That got me thinking about my own life. I, too, often feel uncomfortable asking for help. Why is this, I wondered? One reason is dread of a perceived loss of power. Envision looking at a drawing depicting two people. One person is lifting bags of groceries from a shopping cart into a car trunk and the other person is standing by. Who do you see as being more powerful, the person lifting the bags or the person standing by? In our action-oriented society, it is the doer who is perceived as more dominant and authoritative. We respect the doer as active and energetic. However, we have the power within our own minds to erase this stereotype and be ready to allow others to help us.

Another reason why it is painful to ask for help is fear of rejection. If I telephone my neighbor to ask him to come over and bring my floor fan into the basement, I risk hearing, "Gee, I’d like to help you with that, Linda, but I am too busy today." That unwillingness to help can feel just as disagreeable as downright refusal. It is important to replace these negative thought patterns with logic and judgment. I need to realize that my neighbor is having a hectic day today but will be happy to help tomorrow when he is less occupied. For some, there are feelings of shame and inferiority associated with asking for help. Polio Survivors strive to fit into the mainstream of society. When I wheel into the village hardware store, I often need help in reaching items stacked up high on the shelves. I can allow myself to be awash in feelings of weakness or I can determine to ask for assistance and better assure that I will leave the store with the satisfied feeling of having the items I need. The choice is mine to opt out of feeling inferior and choose to be strong.

Another rationale for reluctance to ask for help is based on how we were raised. In our youth, self-sufficiency was a highly prized way of life. We rarely witnessed our father request assistance. Heck, he didn’t even ask for directions on road trips! Similarly, we had very few examples of our mothers asking for help. Our parents set the example of being as autonomous as possible. No wonder it feels uncomfortable to deviate from patterns firmly established in our formative years. And finally there is the worry of reciprocity. How will I reciprocate when my friend shops for my groceries on a snowy day? A mutual interchange of favors is simply not necessary. Your friend helped you because she wanted to, not because she hoped for a favor in return. Your sincere statement, "How wonderfully thoughtful you are; thank you so much!" is sufficient reciprocity for a good friend.

Do you avoid asking others for help? Try to understand all the possible reasons and determine to gently change your thinking. Asking for help means opening up, expanding your comfort zone, and trusting others. When we ask for help, we are actually helping others by allowing them to enjoy the happiness that comes of doing a good deed.

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MISSION STATEMENT:

POST POLIO SUPPORT GROUP

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

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AGM 2006

Nearly 200 members and friends met in Cork on the 13th May to hold the Annual General Meeting and conference of the Post Polio Support Group. This was a special occasion as it was part of the commemoration of the 50th anniversary of the Polio outbreak which affected Ireland in 1956 and which hit Cork particularly hard. As Mrs McAleese said to us at Áras an Uachtarain, "Who knew then how much courage would be needed over the years…"

An opportunity was provided for reflection and prayer before the AGM. The prayers and reflections were composed or sourced by Polio Survivors and this had a particular resonance for all present; a very moving occasion indeed. Copies of these prayers are available from the office on request.