The Survivor Newsletter: Autumn 2000

Important Information on Service Changes for People with Disabilities

From 12th June 2000, the NRB (National Rehabilitation Board) ceased to exist and services for people with disabilities will be delivered in the same way and by the same organisations as services for everybody else.

If you want advice and guidance on vocational or employment skills training, rehabilitative/life-skills training, employment opportunities, employment supports and grants, contact FAS Employment Services in your area If you need to have your hearing test or need to have your hearing aid repaired, this service will now be provided by the Health Board in your area. If you want information about entitlements or social services or if you want help to find the right entitlements or social services for you, these services will be provided by Comhairle (Comhairle will operate from most of the former NRB Centres).

If you want information on aids and equipment or if you want to look at and try out aids and equipment contact the National Disability Resource Centre, 44 North Great George’s St., Dublin 1.

If you want information about designing for accessibility, or need information on accessible buildings, accommodation and area, contact the Access Service at 44 North Great George’s street, Dublin 1.

If you want to appeal a decision about disabled drivers’ benefits contact Disabled Drivers’ Medical Board of Appeal, C/O National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co. Dublin.

NEWS ON THE NATIONAL PHYSICAL AND SENSORY DISABILITY DATABASE

IF YOU ARE NOT IN YOU CAN’T WIN!

Registration Criteria:

Information will be collected from people with a physical and sensory disability receiving or needing a specialised health or personal social service currently or within the next five years who:

Have a persistent physical or sensory disability arising from disease, disorder or trauma;
In the case of dual disability, where the predominant disability is physical or sensory;
Are under 65 years of age or under;
Are receiving, or require a specialised health or personal social service, which is related to their disability, AND
Have consented to being included on the database.

ANYONE may leave the database at any time, if they no longer require a specialised health or personal social service, or if they simply want to withdraw their consent to being on it.

Ed: - The database is at the moment in a Pilot Study Phase in certain Health Board areas - we will bring you more information on this in the next newsletter. The Post Polio Support Group would consider it important that all people with disabilities would support the successful completion of this project.

Re: CAR INSURANCE

The Disabled Drivers Association have now negotiated their own Car Insurance through Lloyd’s, which mitigates in favour of the disabled driver. For more information contact Carmel at Disabled Drivers Association, Ballindine, Co. Mayo. Tel: 094 64054.

Re - MEDICAL CARDS

The Post Polio Support Group encourages all our members to apply for a medical card, even if you are over the income limit. We have been assured by the Health Boards that the needs of Polio Survivors will be looked upon sympathetically, and now is the time to put this to the test.

If anyone, in any area, has applied for a MEDICAL CARD within the last year, whether the result was successful or unsuccessful, please phone our secretary, Joan at 01 454 9237. (if she is not at home, leave a message on the voice mail). This information is VITAL to our efforts to have one provided for all survivors.

COMMISSION TO INQUIRE INTO CHILD ABUSE

The Commission to Inquire into Child Abuse is now inviting the following persons to come forward to give evidence:

Persons who have experienced abuse in childhood (up to 18 years of age), while in an institution or in foster care. Institution includes industrial school, a reformatory school, an orphanage, a hospital, a children’s home and primary and post primary schools.

Application Forms and an Information Leaflet are now available. Assistance in making an application will be provided to all those who contact the Commission. All enquiries are treated in the strictest confidence.

Persons who have already given their names to the Commission will be contacted automatically.

The Commission will, at a later time, seek evidence and submissions from other individuals and groups who feel they can contribute to its work. The Commission welcomes all enquiries.

People with Disabilities in Ireland (PwDI The People with Disabilities in Ireland Ltd., formerly known as the Council for the Status of People with Disabilities, invites all people with disabilities to register with them.

Their Aims and Objectives are as follows:

Representation of all people with disabilities through an effective representative structure.
Support and promotion of self-advocacy of people with disabilities through training, raising awareness and providing information.
The company (in the way in which it does its work) will reflect the right of people with disabilities to speak for themselves.
The company will provide support to people with disabilities, their families, carers, advocates and communities to express their concerns, hopes and expectations.
The company will represent these views to statutory and voluntary organisations, government departments, those who direct policy and those who control resources.
The company will work to raise awareness of the issues of concern to people with disabilities. It will lobby for the changes which will promote equality for people with disabilities.

Application forms can be obtained from:

People with Disabilities in Ireland Ltd.

Richmond Square

Morning Star Avenue

Dublin 7.

Tel: 01 8721744 Fax: 01 8721771 Email: info@pwdi.ie

Ed - The Post Polio Support Group would encourage all its members to register with the PwDI - as a strong united voice of people with disabilities is vital in the Ireland of today.

DISABLED DRIVERS AND DISABLED PASSENGERS (TAX CONCESSIONS) SCHEME

The Post Polio Support Group is aware that the existing Terms of Reference for inclusion in the Disabled Drivers and Disabled Passengers (Tax Concessions) Scheme, does not take into account the physical disabilities of our members, many of whom have driven for years, and who are now finding it difficult to drive because of increasing muscle weakness, etc.

This Scheme is at the moment being considered by an Interdepartmental Review Group, with a view to identifying whether and to what extent the Scheme should be modified to take account of whatever anomalies currently exist.

The Post Polio Support Group has made a formal submission to the Review Group, putting forward the needs of our members in relation to this Scheme.

Ed - We would like to hear from our members in any area who have applied for and been accepted (or rejected) for inclusion in this Scheme within the last 12 months.

INTERVIEWEES SOUGHT FOR TV DOCUMENTARY ON SISTER ELIZABETH KENNY

The Post Polio Support Group has been contacted by Clare Bonham who is working on a film about Sr. Elizabeth Kenny and her remarkable work with polio sufferers in the early 1900s. As a result of her work, tens of thousands of children received a more humane and effective treatment for the debilitating effects of polio. This film will attempt to create an intimate portrait of this remarkable woman, and the producer would like to talk to anyone who came in contact with her.

If you, or anyone you know, remembers Sr. Elizabeth Kenny, please contact Clare at clarebonham@hotmail.com.

SOME FAMOUS PEOPLE WHO HAD POLIO

Franklin Delano Roosevelt, 32nd US President
Jack Nicklaus, Golfer
Mia Farrow, Actress
Judy Collins, Singer
Francis Ford Coppola, Director
Lord Snowdon, Photographer, UK
Itzhak Perlman, Internationally acclaimed violinist
J. Robert Oppenheimer, physicist and teacher

For more info: http://geocities.com/arojann/poliopeople.html

FOOD FOR THOUGHT

Tried and Tested

Marguerite Barwick McElroy explains how she manages aching arthritic joints

I start by emphasising that I am not a medical specialist! My experience is of someone who has had to learn to deal with considerable arthritic problems that have stemmed from overuse, exacerbated by a dose of childhood polio and the severe scoliosis that I subsequently developed.

The prescription drugs available that are effective in helping with some forms of arthritis are mostly aspirin based - and all forms of aspirin cause me considerable digestive upset, so I can’t take them. Having got extremely fed up with feeling so unwell and only being able to manage the pain by very high doses of Codeine and Paracetamol-based painkillers (which were becoming increasingly ineffective) I looked to find out what I could do for myself. This is what I found:

Nutrition for me proved to be the key. What I ate and what I avoided eating could both be important. I personally didn’t discover that any particular foods caused a particular increase in my symptoms, but, for example, tomatoes and sweet peppers can be a problem for some people with arthritis. I did discover that is was helpful to use olive oil rather than any other oils in cooking, as this was positively helpful, and other oils, for example corn oil, actually can heat up the joints as it were and cause more pain. It is to do with the balance of Omega 6 and Omega 3 oils, apparently.

I started eating oily fish regularly, especially sardines, herrings, mackerel, tuna, salmon, trout, and when I couldn’t do this, and even when I felt particularly achy, I took a good Fish Oil Supplement.

Fish Oil is high in essential fatty acids known as Omega 3 EFAs, of which we are chronically low in our society. We are often low in the other essential fatty acid, Omega 6, but it is vital that the balance between these two EFAs should be in the correct proportion - with no more than 4 times as much Omega 6 as Omega 3. This imbalance is now recognised as a serious contributor to ill-health and it is usually more important for us to increase the Omega 3-containing foods.

Omega 3 is also found in linseeds and linseed oil, which is useful for vegetarians. As linseeds are also useful in providing protection against hormonal upsets in women and hormone related cancers in both sexes, as well as being gentle and effective bowel regulators and calmatives, it is worth sprinkling some on your breakfast cereal even if you aren’t vegetarian. (Or make bread and pastry from the special blend mix of flours that the wholefood firm Suma make. It contains flours from Soya, sunflower seeds and linseeds as well as organic wholemeal wheat flour and is so utterly delicious it is hard to believe that it is doing you good!).

I discovered that ginger is well researched as being an effective anti-inflammatory. This could just be an ordinary drink made of half a teaspoon of ginger in a mug of hot water with some sugar to taste, taken two or three times a day or whenever you can. Also, adding ginger to food, either in a powdered form or as root ginger or even having ginger biscuits and crystallised ginger as sweets rather than other things, all adds up to increasing the ginger content in one’s diet. As ginger, too, is excellent for the digestion, it really can’t be over-emphasised that it’s an excellent idea to have a regular intake of ginger!

I discovered that I needed to reduce to a minimum my consumption of red meat, particularly any fatty red meat, as this has a tendency to make one a bit more achy. I still eat it, but less frequently than hitherto. As a note, it is always helpful to eat onions and/or garlic when one has red meat as this helps reduce the absorption of the saturated fats that such food is full of, which can be harmful to many things in your body including your heart and arteries.

I discovered that I needed to drink more plain water. Drinking is often a problem for someone whose mobility is limited and is in pain - just because of getting to the loo. However, this is another area where it really must be emphasised that the less one drinks the more likely one’s joints are to ache. This drinking must be pure

water, not tea, or coffee, or coke, or soft drinks or fruit juices or anything like that. All the preservatives will act as a type of diuretic that makes the liquid go straight through you rather than get absorbed into your tissues and help to clear out the debris that builds up.

What I had to accept with this approach to managing my pain was that it wasn’t a quick fix and at least three months went by before really significant difference was made. However, I discovered this improvement continued and now, some seven or eight months after starting on the nutritional supplement regime and looking after myself through my diet, I am feeling considerably fitter and very rarely need to take a prescription pain killer.

SOME RECIPE IDEAS:

Grilled herring fillets served with a Salsa (sauce). This is made by frying some sliced eating apples, onions, and a little grated root ginger together in a little olive oil. Season with black pepper and a small amount of sea salt. (Sea salt is lower in sodium than ordinary table salt). Grill, the herrings under a high temperature for a minute or two each side. Coat with the Salsa and serve with steamed potatoes, carrots and a green vegetable.

Baked potatoes with mackerel and mustard. One large baking potato, plus 2 oz smoke mackerel, one teaspoon or wholegrain mustard and 50 ml of crème fraiche or plain yoghurt per person. Some lemon juice, black pepper and chopped chives or parsley. Bake the potatoes in their jackets until well done. Flake the mackerel, discarding the skin. Scoop out the flesh of the potatoes, mix with the other ingredients and pile back into the skins. Brown under a hot grill for 3-4 minutes. Serve with a big salad dressed with a little olive oil and wine vinegar.

Reprinted with permission from the British Polio Fellowship Bulletin Volume 39 Issue 3.

MEMORIES OF THE EARLY DAYS OF THE CENTRAL REMEDIAL CLINIC

I must have been one of the first patients who attended the Central Remedial Clinic when it first opened, up three flights of stairs in a house in Pembroke Street. I remember my Dad carrying me up the stairs - I must have only been four or five years of age. I remember with affection, Lady Goulding, Miss Kathleen O’Rourke and Mr. Boyd Dunlop.

The Clinic soon moved to Goatstown, and I attended there, on and off, until I was seventeen. I went to school there for a year, in the school-room presided over by Mrs. Walsh (her instruction on joined writing - up slanting, down straight - has stayed with me forever!). I remember well the physio routine, the OT routine, and the playroom routine. It was much more natural to play ‘clinic’ or ‘hospital’ with my dolls, and they all bore scars of having been cut open and sewn up - when playing ‘operations’. I joined the first girl guide ‘disabled’ troop, St. Joan’s, and we had our first meeting on the bus, because the key to the clinic was mislaid. I subsequently went on to become a guider myself, and enjoyed camping and hikes and teaching other children the pleasures of guiding.

Mr. Boyd Dunlop was responsible for getting me on my feet, and I boasted the fact that I had 21 operations before the age of 21!

I subsequently went to on to become an Occupational Therapist myself, and while I always worked in the psychiatric services, I did have the pleasure of working on a professional basis during my training with Ann Beckett, and Mrs. Gault.

I would love to hear of other stories from the Central Remedial Clinic in the old days, so please put your pen to paper and I will print them in the next newsletter.

Paula Lahiff