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Not Just a Coffee, Huntington's SA & NT supporting the lives of those with Huntington's

Every Wednesday a group of dedicated volunteers are shining a ray of light into the lives of those with Huntington’s Disease. Huntington’s SA & NT hold ‘Coffee and Co.’ a support group style event for those with Huntington’s. The sacare social team were lucky enough to be invited a few weeks ago.

Huntington’s is a degenerative neurological condition that affects several of sacare’s clients. The disease sees a person’s brain cells die in certain areas which can result in a gradual loss of cognitive (thinking), physical and emotional function. Huntington's disease is a complex and severely debilitating disease. Sadly the disease does not have a cure, all researchers do know is that it is caused by the inheritance of an altered gene, meaning that it is genetic.

Coffee and Co. is run by Michele, Carmen and Julie of Huntington’s SA & NT. A weekly session for those with Huntington’s to chat, eat and enjoy in the company of those who have shared experiences with the devastating disease.

Michele is the General Manager of Huntington’s SA & NT Inc. and is truly passionate about the work that she does. Michele’s mission became apparent to her in 2004 when she was working as a nurse. As she puts it, her life was ‘redefined’ when she nursed her first patient with Huntington’s, Bernie;

“He was very tall, he could not stop moving, most of the staff avoided contact with him out of fear as he seemed scary. I saw a person, not a disease. I built up a rapport with him and I came to appreciate the gentle giant behind the constant movement of arms and legs.”.

Bernie passed away in the same year, but inspired Michele to better the lives and raise awareness for those with Huntington’s Disease.

As listed on their website, “Huntington's SA & NT Inc was formed out of a community need for an organisation to identify and address the unmet needs of those people in South Australia and Northern Territory with Huntington's disease or impacted by Huntington's disease."

The passion and hard work that is put in to assisting those with Huntington’s is embodied in their weekly “Coffee & Co.” sessions. Coffee and Co. runs every Wednesday from 11.30 am- 3pm and is an opportunity for those with Huntington’s to get out of the house and be a part of a community where people have experiences similar to their own.

Attending Coffee and Co is like walking into a big warm hug. Everyone is welcome- family, friends, support workers and nurses. Held at the HD SA & NT headquarters in Glandore, a typical catch up will include a cooked lunch followed by games and activities. On the day the sacare Social Team visited, the wonderful volunteers were serving up tacos, pesto pasta and a range of other goodies for everyone who attended.

(A recent Coffee and Co, where the team took part in a 'Chi Ball'. Taken from Huntington's SA & NT Facebook Page)

The sessions came about after volunteer Julie came up with the initial idea, and then as a larger group (with the help of a local artist for the logo) it became the Coffee and Co. of today! The first session saw about 6 people attend, but they now have over 30 people come each week.

The sessions have a rough schedule but as is the nature of Huntington’s, anything and everything can happen, but this is not an issue. Spontaneity is taken into the organiser’s stride. Don’t feel like playing a certain game? That’s OK you can do something else. Don’t feel like eating? All good, feel free to have a bite later. Go with the flow is the way the sessions work and is an ideal mentality when to comes to Huntington’s.

We were also privy to a game of ‘remember what is on the tray’ where Carmen brought around a tray of items for everyone to memorise. Later on the test was to see what you could remember from what items were on the tray. No easy task, trust me! Apparently, the week before we had missed an amazing session of slot cars for the gentlemen and a pamper day for the ladies. Even male support workers were getting into the fun and helping with nail painting!

Click here to learn more about the upcoming “Coffee & Co” days.

It was amazing to see the hard work and dedication that the volunteers put into supporting Huntington’s SA & NT and their patrons. The association also does a lot to help those in the community with Huntington’s, by supporting them in difficult times and guiding families and support workers who may need care advice. But this is only tip of the iceberg.

Huntington’s SA & NT Inc. are planning to hold a few fundraisers this year, so be sure to follow them on Facebook, or you can donate straight to their charity page here.

Sacare and our clients are so lucky to be involved with this association and we really value the hard work that Michele and her team put into supporting those with Huntington’s.

(Pictured at top: Julie, Michele and Carmen of Huntington's SA & NT at Coffee and Co.)

If you have been diagnosed with Huntington’s or have a loved one with this disease and are looking for additional support, please get in touch with Huntington’s SA & NT either through their website here or, can you follow their Facebook page.

Alternatively you can contact us and we’d be happy to help.

Find out more about care options sa care can provide for those with Huntington's by following this link. 


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