Shout Huntington’s Aloud

Note: This blog was written by SHA Fundraising Officer Gemma Powell. She writes about the opportunity she was given to go to SHAyp’s 8-12 residential trip and what it was like seeing the youth service from an outsider’s point of view.

“Close your eyes and put out your hand!”

“Why?”

“Because, just do it,”

“Ehhh … okay?”

I was on a bus surrounded by 13 sugar buzzed and excited children I’d never met before waiting to set off for this year’s SHAyp 8-12 residential camp. When I’d first been asked to help out, I’d enthusiastically agreed. In that moment, as this child makes a very suspicious request and the rest are looking at me like, “Who even are you,” I’ll admit I was worried. Scratch that in fact, I was terrified!

However, I arrived at camp with a pocket full of sweets (that’s why I was to close my eyes), and new ‘friends.’ My enthusiasm had returned with gusto. The camp itself only lasts three days (2 nights) but in a good way it felt both longer and shorter.

After a quick lunch the kids are straight into activities. I’m with the girls so it’s climbing challenges. There’s lots of laughter, weird animal noises (no animals around by the way!) and a constant stream of encouragement from those on the ground for those mid climb – nobody really did it on their own! This set the tone for the whole trip.
Already the different personalities are really apparent and it’s so interesting to watching how they approach everything differently from the activities, to meal times, to bed times. The trip passed in a whirlwind keeping busy with activities from water walkerz, survival skills, lazer quest and climbing. I’m not complaining, but I did feel like I was being picked on during lazer quest just a bit!

On the Tuesday morning the youth workers, Pete, Grant and David, led a group work session where the topic was Huntington’s disease (after all that cruel disease is the common denominator). I know what you’re thinking! How do you get a bunch of hyper kids to sit and listen to information on such a serious topic for a whole morning? And to tell the truth, they didn’t! There was a quiz, a video, lots of running about during seemingly daft activities but which all ultimately led to learning about HD. You really have to admire the creativity of a youth worker!

As a fundraiser when I write about the youth residential, I always say something like, “The camp is a chance for the children to meet other children from HD families, learn more about HD and of course have fun as well.” And it does that. But it also does so much more. I’ve never been so aware of the value of the youth service and the role they play in these young people’s lives. They are a trusted adult who they can confide in, the adult that is always looking out for them, that is always willing to listen, and that is also willing to have fun with them. I learned on this experience that no matter their home life and their own personalities kids are kids at the end of the day.

Now as a fundraiser I might say something like, “The camp is a chance for the kids to take part in various activities which help them grow their confidence and resilience, let go of stress and responsibility, and most importantly have fun! It’s a chance for the kids to be kids.”

 

The Glasgow & Clyde Area Team offer support, advice and information to individuals and families who live with Huntington’s Disease. We each have our own skills and experiences developed over time from our personal and professional backgrounds.

We would like to take this opportunity to introduce ourselves and for the purpose of this blog each member will be discussed by the other team members.

Last in first up….Claudia Lang.

Claudia joined the SHA in August 2017; she has extensive social work experience. She has settled well into the organisation in a short period of time and integrates well within the team. Claudia is very much into the process of meeting families and building on her role as HD Specialist. One of Claudia’s qualities is her ability to resist sweets, chocolates and biscuits unlike her colleagues. We value her calm and assuring presence which most certainly complements other characteristics within the team. Claudia’s skills extend to the kitchen. She has yet to prove herself as a chef to her team colleagues however we will welcome our invite for a nosh up!! That is if she gets time since she is also the proud keeper of hens – maybe we’ll get to sample the eggs with our meal! Welcome Claudia to the SHA and our Team.

Next up Jessica Muscatt.

Jess is from an Occupational Therapy background and moved from South England to join the SHA in January 2017. She is now very much acclimatised in her role as HD Specialist. Jess is the bubbly one in the team; we value her ambition to work to a high standard no matter what aspect of her role she is undertaking. Unfortunately her ability to master the ‘Glesga’ patter has a long way to go, but it will, however, occupy her time while she is waiting for summer!! Jess has a keen interest in a choir but thankfully she doesn’t expose her colleagues to her vocals in the office.
Gillian Blair joined the service in December 2015. Gillian comes from a nursing background with particular interest in Palliative Care. We value Gillian’s eclectic interests ranging from Game of Thrones, bling & fashion to World Wrestling Entertainment. Who would have thought that someone so feminine would be so physical and vocal when watching live wrestling. Gillian brings so much fun, laughter, drama and experience into every day and we never know what the day will bring. We do know however that her commitment to her work and all the people she comes into contact with is always of the highest level. Gillian leaves no stone unturned, if it can be done rest assured Gillian will do it.

Sally Woolvine joined the service in November 2013 as team manager and Senior HD Specialist. Sally comes from a Social Work and Palliative Care background and moved to Scotland from North West England and like Jessica has had to adapt to the Scottish “culture” as well as getting to grips with a new job which she has done extremely well. Sally’s best friend is her sat-nav! (she’s the first to admit she has no sense of direction on the roads). We all value how Sally leads and motivates the team. She is very generous with her time and support. She nurtures our strengths and gives us good advice at all times to assist us in supporting families. Sally has had a pivotal role in developing self-confidence and competence in the team. In January 2017 Sally became a super proud grandmother of the most beautiful baby boy, Loughlan. In her spare time Sally enjoys dangerous pursuits such as wild rides on the motorbike and diving in exotic locations.

Anita is our Admin Resource Worker. She joined the service in November 2000 when John Eden was just a fledgling! She has seen the SHA grow significantly over the years and has worked through many changes. She has seen the SHA go from strength to strength. Anita is the oracle of our local team and her ability to recall information is astonishing at times and worrying at others. Anita provides a sense of stability in the team. She is often faced with problems, emotions and a range of people’s day to day experiences from staff and families who contact the service yet she always manages to offer support, advice and a listening ear. Anita runs a tight ship in the office, the team are well aware of what they can or cannot get away with. But more importantly Anita nourishes our emotional wellbeing with her supply of comfort and treats. She is the queen of high teas and cocktails. It is very reassuring for the team to have Anita here as our anchor to help us manage our day to day activities and we would struggle without her.

We hope this provides a sense of who we are as individuals but more importantly that as a Team we recognise and value each other’s strengths and diversity. The Team share a mutual sense of respect and inspiration in the work we do with families. We value the privilege given to us by families to be involved in their lives and we are all looking forward to a hopeful future in the world of HD.