Meeting in Torremolinos 2008

Meeting in Torremolinos 2008
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From the 21st to the 28th of June 2008

As every year, we meet again at the Príncipe Hotel in Torremolinos to celebrate a new PKU young-adult meeting.

Since we had more time this year, we have been able to add new things to the program, like for example the new games we palyed during the week. In this meeting, even though we have followed the plan of previous years, we have had changes like the on e mentioned before, new faces among the group and have enjoyed of the new installations of the hotel (Enormous swimming pools with Jacuzzis…)

The meeting began on june 21st. The participants arrived all throughout the day, so obviously, we had not scheduled no lectura that day. Some people came the following day when the program had already began to be developed, but they adapted perfectly.

On Sunday 22nd at 10 am we held the presentation. It was done by Isabel García, Irati Mestraitua and Ana Cera. We delivered the programs and the questionnaire. We also formed the groups for the hands on cooking workshop, as we had alrerady done last year, we created three groups. At 11:30 am the first group had their first workshop. They cooked some bacon, tomatoe and mushroom pasties. They looked very tasty, and weate them for dinner. That same afternoon we had time to enjoy in the swimming pool and chill out.

On Monday at 10 am we did the first part of a survey about general PKU knowledge prepared by Dr. Aldamiz. At 11.30 the second group had their hands on cooking workshop in which they prepared the same recipie as group 1. At the same moment, the first group had the nutritional evaluation of the pasties. They had to find the nutritional values (phenylalanine, proteins, carbohydrates and energy) of the recepie they had cooked. Most of them already knew how to make the calculations, and those who did not learned very fast.

That afternoon (5:30pm) we played the PKU game at the beach. It is very similar to snake and ladders. For each square we there was a question, if they answered correctly they threw the dice again, if they missed they lost their turn. We made five groups. In each group there was one person who was wearing a t-shhirt with a certain color, he/she was the spokesperson as well as the counter. We must say that we were shocked about the lack of information they have about their pathology, wich makes think that they must attend to the future lectures in the regional and national meetings. They must get involved in information seeking instead of leaving this kind of efforts to their parents.

At night (11 pm) we met at the hall to go to the beach and celebrate the night of saint John (bomfire night). Since it was impossible to have a barbaque (Malaga style celebration), we bought some snacks, soft drinks and beer as well as carbón for the barbaque. No many were brave enough to have a night swim, the water was terribly cold.

On Tuesday 24th at 11:30 am the third group mhad the hands on cooking (pasties) while group 2 mhad the nutritional evaluation.

In the afternoon (3:30pm) the first group cooked the secon recipie (chocolates stuffed with fruit, toasted candy and turron) while group 3 had the nutritional evaluation of the first recipie. At 6:15 pm we played traffic lights at the dining hall with the help of three cardboards: red, yellow and green. We showed them certain food that they had to identify in the dining hall and classify them as: red (forbidden), green (free) and yellow (not regular) .

On Wednesday 25th at 11:00 am we had a lecture with Dr. Mª del Amor Bueno, from the Virgen del Rocío Hospital from Seville. The lecture was about general PKU knowledge, focusing on maternal PKU. She also answered very kindly to all the doudts many assistants had, which by the way,it has been the edition in which more questions were asked.

At the afternoon we shared ideas about the traffic lights game. We were very glad to leaqrn that they al knew perfectly what they copul or could not eat.

On Thursday 26th in the morning (11:30am) the second group had to cook the second recipie while the first group did the nuritional evaluation.

In the afternoon (5:00) the psicologist specialised in rare diseases, Mrs. Aurora Martínez Loscertales from the Andalusian Health Service, gave us a interesting and fun lectura. She spent the whole week with the group so the group soon trusted her enough so as to make her work rather easy.

On Friday 27th at 10 am we took the second part of the PKU general knowledge survey, in order to acknowledge what they had learned during the week. We saw that this meeting helped them learn new things about their PKU. At 11:30am the third group had the workshop and then the secon and third group did the nutritional evaluation of this last recipie.

At 4pm, we went on a trip tp Sea-Life in Benalmádena. A very instructive, fun and interesting trip. When we came back we handled the meeting questionnaire.

EVALUATION QUESTIONNAIRE

Ideal date for the meeting: junio

Organization: 7,33

Participation: 7,5

Punctuality: 7

Dining room:
– Variety: 6,2
– Quality: 7,9
– Schedule: 6,5

Hands on cooking workshop:
– Organization: 7,2
– Schedule: 7,3
– Participation: 7,3
– Selected recipies: 6

Meeting schedule: 7,4

Lectures: 8,2

Psicologist Aurora Martínez Loscertales: 7,4

PKU-OTM snake and ladders: 7,2

Traffic lights: 7,6

Group Coexistance: 8,4

The aspect they most valued was meeting new people and seeing again old friends. They also mention they like to learn knew things about PKU, speak openly with physicians and of course: the swimming pool, beach and disco

Worst of the meeting:
They protest about the timing of the activities. They would rather do everything later. They also comment they would would like more freedom on their spare time.

What topics would you have discussed?:
They all are very satisfied with the topics discussed.

Would you come back next year? :
– Yes: 100%
– No: 0%

Would you prefer to change city and hotel next year?:
– Yes: 16,67%
– No: 83,33%

Personal comments:
Most of them agree on coming back next year to Torremolinos although 16,67% prefer to try other regions so that the same people do not have to travel always. They would like to go to a mountain area, and perhps in another date. They also would like some help from the federation on the travel. They also want to thank Reyes for her efforts on the preparation of of the PKU buffet and insist she comes to future meetings.

Note:
We would like to thank the hard work she has done for the Young adults in the preparation and elaboration of the board and questions cards (65) for the PKU game. We are very proud of her because we know the few spare she has because of her work.

We would also want to thank Dr. Aldámiz that even he could not attend because he was engaged in another meeting in Vancouver (Canadá). He made us the questionnaire to hand the young-adults.

Juego PKU-OTM (Power Point, 296 KB)
Charla Dra. María Amor Bueno (Power Point, 3,5 MB)

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