ATAXIA IRELAND ANNUAL VACATION

By Redmond O’Hanlon

The holiday for members of Ataxia Ireland was held from 30th June to 6th July and took place in Cuisle Holiday Centre, Co. Roscommon.

I was collected at my apartment by a transport van organised by Ataxia Ireland on Saturday, the 30th June. We reached our destination about 3.00 pm, where we had a ‘getting to know you’ session with coffee and sandwiches provided. The age range of our group was from 19 to 69 years and between carers and members there were over sixty of us. We got our first chance to share and exchange ideas, among people who were to become our friends as the week progressed.

‘Cuisle’ is owned by the Irish Wheelchair Association. The English translation of the word is ‘Pulse,’ which is a good name, as this word symbolised the rejuvenation which we all experienced. The house is an immense residence, standing in its own spacious grounds, which are beautifully landscaped, and Ataxia Ireland had hired the whole place out for a full week for its members.

During our time there, we were able to strengthen our ‘leather skins’ so that comments we encounter on a daily basis could run off our backs on our return home. By the end of the week, all of us were like Duracell Bunnies, with fully recharged batteries!

I shared a room with one of the voluntary carers. Each room was en suite and only those who needed assistance had carers assigned to them. There was a television in each room, but due to the number of activities organised, it was redundant for the week, in my case at least.

Dinner, which took place at 7pm each evening, was a four course meal, and there was a choice on the menu. Food was outstanding at all times and included such tasty items as cream of cauliflower and cheese soup; warm smoked bacon and pine nut salad with pesto dressing; baked fillet of rainbow trout with almond and herb butter; duck spring roll; roast stuffed turkey and baked ham; baked fillet of cod with warm cherry tomato salsa; baked fillet of salmon with tarragon cream; and roast leg of lamb with herb stuffing and mint sauce. The desserts during the week included banoffi pie with loads of fresh cream, warm chocolate brownies with vanilla ice cream, pineapple fritters with ice cream, warm apple and cinnamon tartlets with vanilla ice cream, and toblerone cheesecake. Breakfast, which included a selection of cereals and juices and a big Irish fry-up, was from 8.30 to 10.30 each morning. I had a huge breakfast as a rule, so most days I was unable to eat the tasty lunches on offer.

On our first evening, after dinner there was live musical entertainment, provided by two young men with guitars, who played a selection of modern pop songs, and got everybody into the holiday spirit.

There was a good, relaxing atmosphere, and members and carers mixed together well right from the start. The staff were wonderfully welcoming, and seemed to know us all by our individual first names, which came as a surprise to me. As far as security was concerned, there was never any need to lock bedroom doors.

Of course, you could easily balloon out in just a week on such rich and abundant fare, especially as the staff would come up with their favourite mantra, saying, like Mrs. Doyle from Father Ted, “Ah, go on, sure, you’re on your holidays!”

I knew that hell would ensue in the coming weeks, when I had to start trying to shed all those extra pounds again, however, the temptation was strong, and I figured I probably would fall by the wayside during the week and give in to the mantra!

On our second day, we went on a trip into Roscommon Town - to the Bowling Alley, which had been booked for us by Ataxia Ireland for the afternoon. There were so many in our party, that the general public had to be restricted to just one bowling lane. It was good fun, and even those of us who were most disabled were able to bowl the heavy ball with the aid of a special bowling device. On our return to the house, we had a yoga session in a darkened room, for relaxation. The instructor gave us tips and exercises to help relax every muscle.

After a delicious dinner we had a karaoke concert which was attended by the vast majority of the people, and the atmosphere was great. There was a wide selection of songs for all ages and the entertainment went on late into the night.

On the third day there was a trip organised to the Arigna Coal Mines in Co. Leitrim. About 35 of us travelled and, when we reached the interpretive centre, there was a packed lunch, picnic style, which the kitchen staff at Cuisle had prepared for us.

The trip was fascinating, and very educational. It delved into the past history of the mines and, as our tour guide had worked in the mines himself for nine years, he was able to provide us with many personal insights into the trials and tribulations of being a miner in those hard times.

Despite our group being mainly wheelchair bound, we were still able to do the complete tour with the much needed assistance of our intrepid caring team. The mine itself was fairly well lit, and the route we followed was nowhere near as narrow as that used by the miners in the past. There was water dripping down on our helmets as we made our way through the tunnels, and the whole experience was very atmospheric. Some of the paths were a bit hilly, so there was some serious pushing for the carers to do. When we returned to the interpretive centre, we watched a DVD, which gave a thorough account of what life was truly like for the miners in those days. The journey was 90 minutes each way, but the time flew, as it always does on a memorable vacation.

That evening there was a wonderful performance by a singer with a voice just like Joe Dolan who had a keyboard and synthesiser as accompaniment.

The decibel levels for conversation in both the dining room and the music lounge were at all times high. In the lounge when the brown curtains were closed every evening and the lights were dimmed for either a dance or a disco, the wooden beams on the ceiling made it seem as if we were in a Swiss lodge. There was a dance floor and both able bodied people and wheelchair users were up on it frequently during dance scores. On one occasion I counted 8 wheelchairs with another 13 people on the dance-floor. Hands were linked between all participants during these occasions.

Many of us sat up drinking late into the night, and strong bonds of friendship were formed between people of all ages.

On the fourth day, despite the poor weather, our spirits were as buoyed up as ever. This time we went on a shopping expedition to Athlone, which was followed by a yoga session for anyone who wished to take part. The shopping trip was in a large, well-stocked shopping centre and many people took advantage of this outing to purchase Hawaiian clothes to wear to the fancy dress evening organised for the final night.

Roscommon is an attractive county, with pretty tree lined roads, and plenty of greenery. Our surroundings at Cuisle were also lovely and many of the guests availed of the beautiful grounds to take a walk around them after dinner, prior to enjoying a few drinks, and joining in the singing. Some people, including yours truly, were real night owls, and never headed to bed before about 3.00 am. (Obviously, after this trip, a long recovery period will have had to follow for most people, as they catch up on the lost hours of sleep!) This was a wonderful period in which participants, carers and members of Ataxia Ireland intermingled and got to know each other better. Friendships were made for life and at times it was difficult to differentiate between who was a carer and who was suffering from ataxia.!

Although there were several activities organised each day, there was never any sense of pressure about them. No-one was in a rush to get things done, and there was always plenty of time to oneself between each of the organised events. This made for a laid-back and stress-free experience, and the time was much more enjoyable as a result.

The fourth night was a disco night, with a DJ and revolving lights. Once again, a wide variety of music was played, and the dance hall was filled with able bodied people as well as those in wheelchairs. After the disco, there was a late night sing- song.

The importance of the Carer/Member relationship was made clear from the start.

Many members had their own carer for the duration of the holiday, and priority was always given to members in order to make their holiday memorable. In other situations, a carer might have greater social freedom, having put their disabled client to bed at a certain time, but here members often stayed up later than their individual carer and were assisted to bed by another carer at the time of their choice.

In real life situations, a well-meaning individual may ask a carer or relative of a disabled person what he/she would like to eat or drink, rather than asking the person directly, as, subconsciously, they associate physical disability with reduced mental capacity. They tend to talk over or through somebody in a wheelchair, as if they were unable to answer for themselves. Although some people had jerky movements, which led to them spilling a drink or dropping food from their fork, in this week there was zero tolerance for any patronising attitudes. I noticed that when I ate rather clumsily or dropped a spoon onto my plate, nobody bothered looking at me disapprovingly, or even handed me back the spoon. There was never any pressure, so I or any other individual could pick up the piece of cutlery in our own time and once again recommence eating and such attitudes added to the relaxation of the week.

There was no monitoring of any kind; it was up to the individual to take as much or as little alcohol as they wished, and I was pleasantly surprised to discover that no glasses were actually smashed all week - apart from one which was broken by a carer!

Our fifth day activities began with an Archery session given by an instructor. Our success as archers for a day gave us a big boost and, within minutes, under the tutor’s guidance, some of us were able to hit the target directly, and in the process, burst balloons! The ataxia condition didn’t seem to be an obstacle to the enjoyment of this event and it is good to know that there are outlets such as these which can be pursued as hobbies in the future. Prior to this day, along with a lot of the other first-time participants, I would never have dared to try my hand at such a sport.

After the archery session, even though I’d had a large and quite late breakfast, I was nevertheless persuaded within a couple of hours to sample some of the healthy ingredients of the lunch on offer, which included carrot and mandarin salad with beetroot and red onion. For those willing to continue increasing their waistline, there was also coleslaw and potato salad; while for those who were really hungry (or just greedy!), there were home-made hamburgers and chips.

In the afternoon a few van loads of us went to the Leisure Centre in Roscommon Town for a swim in the heated pool. It was a wonderful experience, as there was a combination of healthy exercise and at the same time the sensation of being weightless in the water. There was a special pool hoist to lower members into the pool and help them out again, and my own hoist was brought to the pool for me, to transfer me onto the other hoist, which meant I was able to get into the water as well. Each member was accompanied on a one-to-one basis by a carer at all times. There were also extra carers in the pool to provide even more security. This was of special reassurance to me, as due to my condition, I had been in a few near fatal incidents in swimming pools in my former home in Bangkok. On one occasion, while swimming unattended, I sank to the bottom of the pool, and was unable to move. Luckily I was rescued by a waiter, who dived in fully clothed, and hauled me up to the surface. As a result of this, I had not been in a swimming pool in over four years.

In the evening, we had a quiz night attended by almost everybody, with about ten teams of five or six participants each. There was a selection of both easy and difficult questions in each round. In order for such an event to be a success, a number of people had to set the questions beforehand, making sure to provide a good mixture of subjects so that everyone could have a chance to answer correctly, in whatever topic their interest lay. Quiz sheets for each section had to be distributed to every table, and collected up at the end of each round, so there was a lot of organisation required. It was an extremely entertaining night, with plenty of good humour and banter among those present. For a few hours, there was absolutely no need for anyone to remember that they had ataxia - a positive time of escapism at its best.

Later, a few ‘night owls’ like myself got together and had a great laugh exchanging news and stories and enjoying the ‘craic’ until finally ‘hitting the hay’ as dawn approached.

After yet another hearty breakfast, on our sixth day, there was a one-to-one session with a reflexologist, for anyone who wanted it. This involved soft music playing in a darkened room while one’s feet were massaged with herbal oils. Meditation was encouraged by the gentle words of the reflexologist. It was an extremely soothing experience for anyone who availed of it and stress was definitely eliminated from the system.

There were other fun items planned during the week – for instance, a treasure hunt, in which I did not take part myself, but which was enjoyed by everyone who went on it. The yoga sessions were available frequently for anyone who wished, and there was a well equipped gymnasium. Other facilities, such as a hairstylist for the ladies, and a chiropodist, were also provided.

Later on, a few van loads of us headed once again for the swimming pool at the Roscommon. Leisure Centre. There were plenty of carers at hand, but once in the water, some members did not need any further assistance. When we got back to Cuisle, the staff had laid on chips with salt and vinegar for us, as a snack.

The time seemed to race by. We were nearly on our last day and it seemed we had only just arrived! The week had genuinely flown because we were enjoying ourselves so much, and this was due, in a large degree, to the organisers and carers who were so positive and cheerful at all times, and gave of their energy and expertise so generously.

There was not a single grumpy face among all the people staying for the week, which is in direct contrast to what you would meet in normal everyday life. Nobody had a glum face or had to make a complaint about anything. One member on the holiday showed her lack of bitterness regarding her ataxia by commenting to me that ‘Good can come from Bad’!

In my opinion, this situation is unique, and members are very lucky to have such an organisation as Ataxia Ireland to make it possible for us to experience such a series of successful and pleasurable events. It is quite obvious that a huge amount of planning and effort during the past months must have gone into the organisation of this holiday

It is important also to mention that during the week, everybody was catered for and there were special meals available for anyone with particular dietary needs: celiac, diabetic, or vegetarian, or whatever was requested. Some people asked to bring home some of the delicious home made brown bread when they were leaving at the end of the week.

Thursday evening being our final night at Cuisle, there was a fancy dress party with a Hawaiian theme. Nearly all members and carers dressed up hilariously for the occasion and loud colours were the norm. There was a Bar- B- Q in the restaurant, with Hawaiian music playing in the background. A wide selection of food was available and it was a self service buffet, with grilled meats and salads, followed by walnut and banana cake and tea and coffee accompanied by chocolates. One of the carers dared to add to the Hawaiian theme by bringing along a blow-up palm tree, to which he had tied a life size blow-up doll dressed in a bikini! During the disco dancing later, the doll was out on the dance floor with the rest of the revellers. There was a fantastic mixture of costumes, with people dressed up in crazy wigs and clothes in garish colours. The entertainment commenced with a sing-song led by a guitarist, and afterwards there was a DJ for the dancing. The atmosphere was warm and friendly, so that total strangers ended up as lifelong friends. As is normal at all Ataxia functions, there was a prize-giving presentation during the evening. Many prizes were given out and I won an American T shirt on which there was a slogan: “Give Ataxia the Boot!”

On our final morning, the seventh day, I had a full fry before being transported back to Dublin and the reality of life on the outside. There had been an international dimension to the holiday with people there from North and South of Ireland, and also from as far afield as Scotland, Germany, Switzerland and Tanzania.

I regard Ataxia Ireland as a branch of the worldwide Ataxia tree. We are like leaves on a branch of that tree. No two leaves are ever exactly the same. It is my experience that no two people with Ataxia have exactly the same symptoms. My own symptoms include daily coughing attacks, and painful leg spasms, but pain can be counted in degrees. I personally don’t experience any pain that is actually unbearable, but I have met many people with Ataxia who suffer far more pain than I ever have. The most important thing is that I am able to get out and about with the help of family and friends, and my carers. I am not bedridden, or paralysed, or suffering from alzheimers and for that at least I am grateful. Despite its problems, I strongly feel that taking on Ataxia has been a good character builder.

It is difficult to express accurately in words the experience that over 60 people have just had on this vacation, but suffice to say that once a person has been there, they nearly always return on an annual basis, as for most members this is definitely the highlight of the year.

The trip could not have been such a great success without the valiant and tireless efforts of the many faceless people in Ataxia Ireland who have done Trojan work over the past several months, to make this holiday what it was. The carers played a major role, working so generously behind the scenes, and blending in with the members, so that it was often difficult to say who was a member and who was a carer.

I have not mentioned my specific ataxia carer by name, or individual members of Ataxia Ireland as I only knew those who were close to me during my stay. In the interests of fairness, I can only say that it was quite clear to me that all the carers were equally good and I would prefer to congratulate them all generally, rather than singling anyone out by name.

All people had full self esteem for the duration of the week. Nobody was ever judgemental. There was a sense of teamwork and togetherness which was a unique experience for me. All of us really appreciate the efforts of those in Ataxia Ireland who work so hard for us, and yet never look for praise, or for their names to be mentioned, and I look forward greatly to signing up for the holiday once again next year.

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