The Survivor Newsletter: Summer 1998

MAY I INTRODUCE MYSELF!

I would like to introduce myself to you. My name is Paula Lahiff, although any of you who attended the Central Remedial Clinic when it was in Goatstown, during the years 1955-1960, would know me as Paula Daly!

I have been asked by the Post Polio Support Group Committee to take over as the editor of our Newsletter. This is a job that I am delighted to take on, and I have four main objectives, which I will outline to you now.

The first one is that of Post Polio Support Group information. I will ask the Chairperson and Secretary to write a summary of what is going on at committee level and to keep us informed of any news and developments in that area.

The second is that of providing a vibrant point of contact for the social interaction of all our members. I will be asking for letters from you on any topic that is on your mind, and that you think would be of interest to people who have had polio. I will be looking for pen-pals and I need your hints and tips on how to get around problems, where to get equipment, useful contacts, etc. Don’t forget the Newsletter is YOUR forum.

The third aim is that of keeping us up to date with research and treatments available to people who have had polio. Over the course of the year I will be publishing interesting articles with particular reference to people who are coping with the Late Effects of Polio. As there will not be the space to include all the articles I have accumulated, I will publish a list of these and will be happy to send them to our members on receipt of a stamped self-addressed envelope.

Finally, and maybe this is the most important of all, I hope to collect from you our members, a selection of short stories recounting your experiences and anecdotes, your follies and frustrations. I will publish a selection of these writings in each issue of the Newsletter (see page 4), and from these, I hope to compile a booklet which will chart a social history of the triumphs and trials of people in Ireland who have had polio.

So now readers, get out your pens and paper and let us have your stories. Don’t forget, if you want to remain anonymous, you can always write in the third person!

In order to keep our members up to date, I hope to publish 4 smaller newsletters yearly instead of two larger ones. Any ideas, suggestions and constructive criticism will always be received with thanks.

Many thanks to Jim and Joan . and members of the Committee, for all their help and encouragement So without more ado, I introduce this edition of the Post Polio Support Group Newsletter.

Paula Lahiff

AN ENERGY SAVING GIFT

Vera Roche

There are certain things that need to be experienced to be believed. Thanks to the Post Polio Support Group, their dedication and hard work, I am enjoying such an experience.

I was a recipient of a Rollator before Christmas - and what a gift it has proved to be. Now in March, my wheelchair remains in the car behind the driver’s seat. It is there when I need it. Within 3 weeks of getting the Rollator, it became my helpmate around the house. The days of wheeling myself on carpet from place to place is over. Seated on Rollator, all work at the kitchen sink is much easier. At social gatherings, again seated on Rollator, I feel much less constrained and more part of the group.

Healthwise - well I am wearing out more shoe leather. Legs are learning to co-operate upon demand, circulation improving and spine lengthening. One might say “There’s a spring in my step”. Any pain in making this transition is almost forgotten.

I wish to say a heartfelt “Thank You” for the ongoing support and untiring work of the Committee

Editor’s Note

A "Rollator" is a walking aid, similar to a walking frame, but with wheels and a brake.

It can also have a basket and/or seat added. They can be purchased from any aids and appliances supplier.

REPORTS ON ANNUAL GENERAL MEETING

From Jim Costello - Chairperson

We were delighted to se such a good attendance at our AGM this year, considering that so many other organisations had their AGM the same week-end. We had our dates chosen months beforehand, but DFI, the IWA, and the OT’s, among others, then chose the same date. The location of our venue is always a matter of some discussion, and we would always welcome any member’s views on this subject. Next year’s AGM, we hope will be something special, as we plan to hold it along with our Medical Conference. We are presently working on the selection of the venue and international speakers.

We were honoured this year to have the Lord Mayor, the Rt. Hon. Councillor John Stafford, to open our AGM. He praised the work of voluntary groups like ourselves, and went on to wish us well with our work in the future. There were two very interesting talks given on ‘Pain Control’ by Dr. Lorna Brown and Ms. Dara Meldrum, physiotherapist from Beaumont hospital. This is a subject that is of great importance to some of our members and the information and advice given will, we are sure, be of benefit to many. There was a general discussion on many issues of interest to our members during the Open Forum later, and the committee will be considering these matters at coming meetings.

Our committee has some changes this year. Alan Kelly has resigned for personal reasons and Gearoid O’Sullivan was elected at the AGM as a new member. We have since also co-opted Paula Lahiff as a member living in Sligo. We are especially pleased to have another country member on our committee. Paula also has taken over from me thankfully as Editor of our Newsletter, so don’t forget and send in any literary contributions you think may be appropriate.

From Joan Bradley - Secretary

Breadcrumbs from an abundantly full table! That is how Jim described the Government's funding of the physical and sensory disability at our AGM. He went on to say that if it were not for the voluntary sector in this country, the position of disabled people would be dire.

The event was opened by The Rt. Hon. The Lord mayor, Councillor John Stafford, who gave an interesting address, being able to identify with the Polio Survivors present, as one of his family members is coping with this condition. He informed us that he would have had to suffer her wrath if he had done less than this service for the group.

Joan reported that the membership of the group is growing at a steady rate, on a local meeting in Galway that was so well supported by survivors in that area, and on the numerous actions that had taken place during the year. These included lobbying government for some financial help for those survivors who are finding the provision of their needs more than they can afford; (Some progress has been made but this campaign is on-going); having an input to a Neuromuscular Alliance being set up for co-operation of needs and for research, and to give us a more effective voice. Progress was made in setting up an office at the Carmichael Centre, including transferring all the files to the computer there, so that we will not be left out of the current actions being taken in this area. Also reported on was the once off grant obtained as a result of the good work of our first minister for disability, Mary Wallace. This was one of the ‘crumbs’, and I might add a very tasty one, that helped provide for a few of the needs of a few of the membership.

The treasurer gave an update on the finances of the group completing this part of the AGM. While we are very grateful for the grant received from Polio/Rehab, the work of the group may have to be less than last year due to financial restraints.

The lectures on the subject of pain were excellent. We learned that there is more than one type of pain, and that the cause must always be ascertained before it can be tackled. Ways of relieving it were explained and presented a choice of treatment depending on the survivors needs and preference. These included physiotherapy, exercise, stretching, acupuncture, use on the TENS machine and, of course, drugs. Exercise in water was highly recommended for all who can get access to a swimming or therapy pool.

At the open forum later, those present had an opportunity to ask questions and make suggestions. Some good ideas were voiced, the most pressing being the investigation of the reason why physiotherapy treatment is unavailable at Beaumont Hospital. Immediate action on this was promised. One bright spot in the future is the National Medical Conference being planned for both medical professionals and survivors for March of next year. International speakers will be invited to give lectures at this, and it is an event that none would want to miss - see you all there!

THE NOTICE BOARD

Penpals:

We have had several requests for pen-pals from Polio Survivors living in England. If you would like a pen-pal please write to me, enclosing your name, address, hobbies and interests, and I will pass all the letters on. (Address below)

Cuisle, Donamon:

Seamus Thompson of The Irish Wheelchair Association has sent us information about the Cuisle Respite Centre at Donamon Castle in Co. Roscommon. He tells us that Cuisle - which caters for all types of induvidual, family and group holidays/programmes, and where all facilities are accessible to people with disabilities - are intending to run a number of theme weeks in the Autumn and Winter period, e.g. Sports, Music, Painting, Poetry, Aromatherapy, etc. This seems to be the place to go where all your particular needs will be met - good accommodation, good food and a good country environment. For further details and price-list contact Michael Connolly, Cuisle, Donamon, or IWA Head Office, Clontarf. Tel: 01-8338241, or e-mail at iwa@iol.ie (If you would like to write and tell us about your holiday at Cuisle, we would love to hear from you.

All correspondance regarding the Newsletter to be sent to:
Paula Lahiff,
Post Polio Support Group
Carmichael Centre,
North Brunswick Street
Dublin 7.
(01-873 0338 or 071-50023)
E-mail: twsspala@iol.ie

Nutrition and Post-Polio
Lauro S. Halstead, MD
National Rehabilitation Hospital, Washington, DC, USA
Reprinted from Polio Network News, Vol. 14, No. 1,
with permission of Gazette International Networking Institute, 4207 Lindell Blvd., #110, Saint Louis, MO 63108-2915

This is the story of my personal journey to learn more about nutrition. The path I followed and what I discovered along the way are specific to my body, my nutritional needs, and my disability.

Some of the principles I learned may apply to others, but the particulars relate only to me. I would no more recommend you follow my specific diet than I would urge you to take someone else’s medication. If you want to change your eating habits, please do it under the guidance of a licensed nutritionist. That’s what I did.

As it turned out, the nutritionist I worked with had a special interest in chronic disease, although she was unfamiliar with post-polio syndrome. Before going to her, I held what I considered was a traditional by ‘enlightened’ view of nutrition. In other words, I was eating the kind of diet typically recommended in the medical literature and by the experts for a 61 year old male with my medical history. What I quickly discovered is that ‘enlightened’ is not always smart.

When I was in residency training many years ago, I attended a lecture by an eminent nutritionist who said males should restrict their intake of ‘visible’ eggs to one or two a month; so I reduced mine to maybe half a dozen a year. A short time later, I heard another well-known nutritionist say he was starting his new-born son on 2% milk; I switched that night from whole milk (3%) to low fat (2%), and over the years limited my intake to what I used with cereal.

Then there was the issue of girth control. In the interest of watching my weight, I tried to avoid snacks and sweets, except on special occasions. Fortunately, I don’t have a very sweet tooth, so this adjustment was not all that difficult.

And so it went. Over the years, I cut out greasy foods, then lightly fried foods, and finally even lean, red meat. By the time I saw the nutritionist for my first appointment in February 1996, my diet consisted, more or less, of the following: for breakfast, one to two large glasses of orange juice, a bowl of raisin bran with milk and one banana; for lunch, a large tossed salad with low calorie dressing, a half-pint of low fat yogurt and fresh fruit; and for supper, typically fish or chicken (with occasional red meat), vegetables, potato or pasta, and a salad.

I also drank a soft drink mid-morning and mid-afternoon most days and had a night-cap at bedtime, most evenings. Sounds pretty healthy, right? That's what I thought, too, especially when I considered that my cholesterol was normal, my weight was essentially the same as when I graduated from college, and people in the cafeteria line never tired of saying, “Wow, that’s a healthy lunch!”

Well, my nutritionist didn’t agree. When I returned after the first week with a diary of everything I had eaten and the amounts, her comment was, “This is incredible”, and she didn’t mean it as a compliment.

As it turned out, she thought almost everything I was doing was wrong. Bananas and orange juice were ‘empty’ calories, the soft drinks were a sugar fix, and my lunch was skimpy at best. In short, I was on a starvation diet, in her opinion, which she calculated at 1300-1500 calories per day.

Well if that were true, I asked, why wasn’t I losing weight? Her explanation was that the body makes certain metabolic adjustments to accommodate different caloric intakes.

But it wasn’t the caloric intake that bothered her so much. My biggest sin was the small amount of protein I was eating (about 5-6 ounces per day). “No wonder you're tired and weak. Anybody would be on that diet”, she said. I, of course, thought instantly to myself, “Is this the cause of post-polio syndrome? Are we all just eating the wrong diet?”

The short answer is “no”. But it’s clear that a sensible diet can make you feel much better, as I was to find out fairly soon. The main goals of my new nutritional plan were to increase the amount of protein, increase the number of calories, avoid the empty calories of orange juice and soft drinks, and finally, cut back on that nightcap.

While all of this was going on, I spent a fair amount of time at the library reviewing what's known about protein metabolism and what would be particularly relevant for Polio Survivors. Here’s some of what I learned.

First, proteins are in all human cells. In fact, they form the basic building blocks for each cell, its metabolism, and life itself. Second, proteins are made from amino acids, and new proteins are being made (synthesised) and broken down (degraded) each day. This protein turnover applies to muscle cells, as well, which are constantly synthesising new protein every day. Some of this new protein comes from what we eat and some comes from “re-built” protein using amino acids already in the body.

The third thing I learned, and most important for persons with post-polio syndrome, the largest “consumer” of protein in the body is muscle.

All of this means that for the muscles to have a fighting chance to maintain or increase their strength, there has to be a generous amount of protein in the diet. We are not carnivores by chance.

Knowing this, I changed my views on meat and other protein in a jiffy. At the same time, I relaxed my attitude about calories, as well. In summary, I experienced a “nutritional makeover”.

It has been almost a full year since my dietary epiphany. I now eat lean meat regularly, along with nuts, fish, eggs, oatmeal, and anything else with protein. I don't eat fruit for snacks as much, and most days, instead of a soft drink, I drink a home brew fortified with a protein supplement.

The results? My daily intake of protein has more than doubled to at least 12 ounces per day and my total calories are now somewhere between 1800-2000 per day. My weight is essentially unchanged. The best part is that my “good” arm, which used to be tired all the time, feels stronger, gets less fatigued at the end of the day, and seems to recover faster when it gets overworked.

Is this a “cure-all”? Absolutely not. I estimate my improvement in the 2-5% range, but it hasn’t impacted all of my symptoms. I still get intense fatigue in the afternoon. My tank of gas is totally depleted by the end of the week. I’m still searching for new ways to pace myself to conserve what energy I have. Is my new diet healthier living through healthier eating? I believe so. Will it work for others? I don’t know. What I have learned for sure, is that sensible eating under the guidance of an experienced nutritionist, is good advice for everyone.