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7 Sep 16


by Dorothy Tortell

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The tenth Annual Young Peoples Camp was held from 12-17 April at the Waihoanga Centre which is approximately one-and-half-hours drive north of Wellington. The Centre is situated in a rural setting above the Otaki Gorge. Our accommodation consisted of a large building with a dining room/lounge combined, a large hall and several bunkrooms/bedrooms. There was a sense of warmth and nurturing from the house and we all felt very relaxed.

There were 11 participants at the Camp, one each from Auckland, Napier, Wanganui and Invercargill, two each from Hokitika and Christchurch and three from Wellington. Ages ranged from 12 to 25 years old with six males and five females attending. For two of the participants this was their first Camp. As with other Camps, all participants very quickly got to know and respect each other and soon were offering knowledge, support and encouragement to each other.

This Camp was run on a similar basis as past Camps with a mixture of indoor and outdoor activities. From my experience this is the most appropriate and most successful approach for these Camps. The participants are always eager to learn about HD, to build on the knowledge they have acquired at previous Camps, and to share this knowledge with those attending the Camp for the first time. As usual there was a Question Box and campers were encouraged to leave any questions on any aspect of HD, anonymously. The questions stimulated a lot of discussion in special sessions dedicated to HD.

On the first evening the Campers were encouraged to identify 3 or 4 aims they hoped to achieve at the Camp and write these up in a diary they were given. Each day, time was set aside for them to assess the progress they were making towards achieving their goals and record their feelings and thoughts on the Camp and on HD.

The outdoor activities consisted of high rope activities, mountain biking, clay pigeon shooting, horse riding, a pool session at the local indoor pool and sea kayaking. One evening the Campers took part in a “nightline” activity which increased their mutual trust and confidence in each other. They were blindfolded and lengths of rope kept them together in a long line. One Camper without blindfold then led them along the stream, over bridges, up and down steps and narrow paths by giving instructions to the first in the line. Each, in turn, passed on the instructions to the person behind. The participants learnt to listen to the person immediately in front of them and all had to, in turn, trust the leader.

On the first morning, the Campers went down to the river to choose a “special” stone where they were encouraged to “store” all their special memories and thoughts of the Camp. Each participant shared with the other Campers why they had chosen the particular stone and at the end of each day they shared with each other what were the special thoughts and memories they had stored in the stone. We discussed how we must respect each other’s stone, opinions and ideas.

The subject of HD was never far from the young persons mind and both formally and informally many discussions took place. They discussed “What HD means to me” and “Have my thoughts and feelings on HD changed over the past year and if so, how and why?” The final group discussion was “Where do I go from here?” Campers were asked to think about where they were in life at the present time and what they hoped to achieve in the future. They then had to think about how they will reach these goals allowing for HD in their life. This activity has been done in previous camps and it was exciting to see that many of the participants have already achieved some of the goals they had identified in previous camps.

The first specialized unit in the country for those with HD will open in Wellington later in the year. This is a very exciting development in the care of those with HD and the concept of such a “house” was explained to the Campers. The manager of the “house”, Margaret Simmons, was invited to meet with the young people and outline her vision for the “house” and to discuss with them how the “house” will be run. At the end of the session, the Campers presented Margaret with a series of decorated flower pots which they hoped will be used in the new HD house.

On the last morning the participants planted a native tree in the garden to remember the tenth HD Camp. Next to the tree, they placed a large stone which they had brought up from the river and on which they had inscribed their names.

At the final discussion before leaving the Camp, the participants concluded that they had achieved their goals from the Camp and that they appreciated the time they had had to discuss their mutual concerns regarding HD and the effect it has on them, their families and friends.

This Camp was a great success. I believe new friendships were made and old friendships strengthened. The bonds formed and the sharing of “stories”, will lead to continuing mutual support.

Such a Camp can only be successful with the appropriate facilitation and help. All outdoor activities were organized and facilitated by David Clegg, a recreational specialist who has been involved with four previous HD Camps, supported by the Wellington Boys and Girls Institute. Without David’s input these activities would not have been carried out in such a professional and safe manner. I wish to also acknowledge Barry Legge who made us so welcome at Waihoanga Centre, his wonderful “retreat”. Barry also provided a great deal of help with the outdoor activities.

For the past three years Mark Chapple from Christchurch has taken leave from his work and arranged for his little girl to be cared for by her grandparents so he could come to help with the HD Camp. His input has been outstanding, his knowledge of HD and the effect it has on families, plus his excellent rapport with the participants makes him a most valuable member of the team. Without his participation, this Camp would not have been so successful. I personally, and the Wellington Association are greatly indebted to Mark and his family.

To all the Campers - thank you for coming and for being so “open”, thoughtful and supportive. I enjoyed spending six days with you.

To all those who supported the Camp financially, including many family members, MS West Coast, Pub Charity, Huntington’s Disease Association (Auckland) and Huntington’s Disease Association (Christchurch) our heartfelt thanks to you. Without your help this Camp would not have happened.

Dorothy Tortell
Social Worker

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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.

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