The Huntington's Scene In  New Zealand

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Graham Taylor

National Annual Camp for Young People From HD Families

Wellington Huntington's Disease Association  June 1997

CAMP FOR YOUNG PEOPLE FROM FAMILIES WITH HUNTINGTON'S DISEASE    
1997

REPORT           by DOROTHY TORTELL Social Worker

CAMP

Venue Waikanae Christian Holiday Park
Camp Organized by Dorothy Tortell
Recreation /Activity Coordinator David Clegg (Active Connections)
Counsellor/Facilitator Ann-Marie Stapp
Camp Helpers Mary Gilmour    Jonathan Hesp    Wendy Silcock    Dave Silcock

PARTICIPANTS

    It was really nice to welcome back the 19 Campers who have participated in previous Camps and the 8 Campers who were joining the Camp for the first time.
    The total number of campers was 27 (16 females and 11 males)
7 family groups made up a total of 16 young people

Age range 10-22 years -

10 years one camper 11 years two campers
12 years two campers 13 years four campers
14 years four campers 15 years three campers
16 years six campers 17 years one camper
19 years one camper 20 years one camper
22 years two campers

The Campers came from 12 towns/cities as follows-
Bay of Islands 1 Hamilton 1 Tauranga 3 Napier 2 Palmerston N 1 Wanganui 2 Wairarapa 1 Wellington 7 Nelson 4 Greytown 2 Christchuch 1 Invercargill 2

CAMP PROCEDURE

On arriving at the Camp the young people had free time which allowed them time to settle into their rooms and meet the other campers. After afternoon tea we all gathered together and Ann-Marie facilitated activities which gave us the chance to introduce ourselves to each other and briefly explain why each of us had come to the camp. The Campers' and helpers' expectations and duties were discussed. In the evening Mary Brookes, music therapist facilitated a music session using a large colourful parachute which was great fun. Later in the evening, David explained to the campers one of the activities which would take place over the duration of the Camp. This was " Hat-Making", where the Campers were asked to pair off with a buddy and learn as much as possible about each other and with this information create a hat which would depict all they had learnt about their buddy.

The gym was available each evening for the campers - those of whom still had energy!

Monday dawned a beautiful day and so the campers were able to go rafting on the Otaki River which proved to be great fun for all, and for one group rather nerve raking and exciting as their raft got tangled up with an overhanging tree. Wonderful team work saved the day! We returned to the Camp late in the afternoon which allowed for free time until dinner.

After dinner we began to share our knowledge on HD. During the first evening the Campers were asked to prepare questions on any aspect of Huntington's and put them in a "question box" which would be opened later in the Camp. This is an important part of the Camp, and as always, I was amazed at the depth of knowledge, a wish to learn as much as possible about this condition and a real sense of compassion for each participant as they told their story or shared their knowledge on HD.

Mary, the music therapist, joined as again during the evening and facilitated a musical fatansy trip.

Tuesday was a day of choices for the Campers - mountain biking, horse-riding, flying-fox, or other outdoor activities provided at the venue. Many of the Campers worked on the hat they were making for their buddy.

After dinner we were priviledged to have the Playback Theatre Company entertain us, after which the Campers presented their "Hats" to their buddies. This was a very special and moving part of the evening with wonderful "Hats" having been created, depicting so well their buddies' interests, personality, hopes and dreams.

The final day, Wednesday, was a busy and exciting one. Each Camper was given a plain white "T" shirt on which they were asked to create a design with HD being the theme. The result was 27 amazing designs, some in bright colours, some in black and white, some in picture form and some with script - all different and all very special, reminding of us of the complexity of HD and why we had all come together for the few days. I hope these wonderful "T" shirts will remind the Campers of the special bond they have with each other.

The final outdoor activity of the Camp was a helicopter ride - a wonderful way to finish the Camp.

Then, as has been the case in previous Camps, Ann-Marie presented each participant with their certificate of attendance and spoke to each Camper in turn.

After lunch, we shared addresses, phone numbers, tears and the camp was sadly over for another year!

EVALUATION OF THE CAMP      ( Table at bottom of page)

Total replies = 27
19 rated painting their t-shirt as excellent and 7 participants rated it as good.
    The amount of organized activity was considered "Just Right" by 21 with 4 stating that there was too much organized activities. 14 respondents would have liked more free time.
    A few of the campers said they would have given up horse-riding and music sessions in order to gain more free time.
    There was also a suggestion that the camp ran over more days which would make it possible to have more free time.
    23 respondents said that they did get a chance to talk about Huntington's to other Campers. Of those that did, 14 found it "Very Helpful" and 9 found it "Quite Helpful".
    The majority of Campers (21) found the accommodation at Waikanae Christain Holiday Park " Very Comfortable", while 6 thought it was " Comfortable".
    The food was considered to be "Good & Enough" by 14 of Campers.
    5 thought it was "Good But Not Enough"; and 8 Campers considered the food "Not So Good".
The camp rules were considered to be "Fair & Reasonable" by 22 Campers but 5 Campers found them "Too Restricting".
    100% of the participants said that they had enjoyed the Camp.
     When asked what they enjoyed the most - most spoke of the outdoor activities such as rafting, biking, flying fox and helicopter ride. Many mentioned meeting people in the same situation, making new friends and meeting old ones again, the connection and togetherness of the group and helping others. Many of the Campers stated how much they enjoyed painting the t-shirts.
    When asked what they had enjoyed the least , they spoke of the introductions on the first night, horse-riding and several mentioned the music acrivities.
    All the campers said that the Camp should be held again next year and that they would all come again.
    Among the "Any Other Comments" were the following -
    · These Camps are brillant. They help us communicate our fears and we need the support of our peers. It is so important that the camps continue. We, the younger generation need to be educated so as to educate the rest of the world. All the leaders gave great support.
    · I'd just like to say thank you heaps for the Camp. It made me realize that I wasn't the only one out there with Huntington's in their family. Big thumbs up from me!
    · The Camp should be held each year as its highly important for everyone with HD to get together and keep the bond that we 've made, otherwise it will be lost and there will be less support.
    · There should be two Camps - one for older ones alone and a mixed one like this one.
    · We need to talk about HD more.
· Dorothy and the team did an excellent job and I enjoyed it immensely. It was fun, exciting, caring and I was stupid not to have gone last year.
    · I think the Camp was really well organized. This was my first Camp and I really enjoyed it.
· it was far too strict and too serious. It should be longer.
    · I would like more bonding and trusting activities.
· It was mentioned time and time again that the Camp should be longer.

CONCLUSIONS

· The camp was successful
· All the objectives were met.
· The young people left the camp more confident, with an increased knowledge of Huntington's Disease, and with a well established support network which I hope will continue for many years to come.
· I feel the camp should continue to be held yearly and WHDA has a committment to run the next Camp to be held in 1998.
    · The Wellington Association should begin fund-raisng immediately to ensure that there will be a 1998 Camp.
    I believe that David's role as Recreation Coordinator was a vital contribution to the success, safety, and smooth running of the Camp. This was a very demanding position which needed much patience and understanding of the campers' needs and the ability to work with the volunteer helpers. This position must be maintained.
    · I believe that a facilitator/counsellor such as Ann-Marie should be contracted again to work with the young people. Once again, Ann-Marie's input into the camp was invaluable; the time she spent on preparation for the Camp and her wonderful interaction with the Campers and helpers was a major contribution to the camp's success.
    · Outdoor activities for such a camp are essential and must be continued.
· Having the catering done for us made the running of the camp easier. I would recommend that the 1998 Camp be held once again at the Waikanae Christain Holiday Park.

· The Campers who will be 17 and over by the end of the year were brought together to discuss the future direction of the camp, such as age range, how many days the Camp should run for, and any special activities they feel the Campers would benefit from. They were unanimous in the wish to maintain the age range - they enjoyed spending time with the younger group members but did suggest that that we consider offering two extra days at the beginning of the camp for the older members. This could be a time for an overnight hike, more in depth discussions on HD. as well as time to learn some leadership skills

· The WHDA has ageed that the age of Campers should be maintained as this year. ie:- 10 -25.

ACKNOWLEDGEMENTS

My sincere thanks to all those who helped make this camp possible - to those who helped us financially, to those that gave us moral support, and to those who gave up their time to help at the camp.

A very special thanks must go to David Clegg and Ann-Marie Stapp for their dedication.

My thanks also to all the campers who got into the spirit of the camp right away and who participated fully and sincerely in all the activities. As always, I really enjoyed meeting you all and sharing the few days with you.

 Dorothy Tortell

Social Worker

EXCELLENT

GOOD

POOR

NOTES

Introductions on the first day

4

21

2

Parachute/Music Session

8

15

2

2 no answer

How was rafting?

18

8

0

1 no answer

Monday evening -music fantasy trip

10

12

4

1 no answer

How was the discussion on HD?

15

10

1

1 no answer

How did you like Tuesday's activities?

15

11

0

1 no answer

How did you like bike riding?

12

5

0

10 no answer

How did you like Playback Theatre?

12

13

2

How was the helicopter ride?

26

1

0

What did you think of Wed. morning activities?

19

8

0

 

 

 

1