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Huntington's Awareness Month: My Experience with Huntington's Disease

The month of May is Huntington’s Disease Awareness month, which is a cause especially close to SACARE’s heart as it affects many of our clients. Huntington’s affects every individual differently, and we are fortunate that the Journo Squad from Briarholm shared their own experiences with the disease.

If you would like to learn a little bit more about the ways that SACARE can support you or a loved one through your own Huntington’s journey, follow this link.

SHARING OUR VOICE: HUNTINGTON'S AWARENESS MONTH

(Dylan and Mikkel, of Briarholm at Kingswood, both have Huntington's Disease)

Hello everyone, and welcome to yet another issue of Sharing Our Voice. We have been really busy lately out and about in the community. We have both been trialling new community activities along with attending some pretty cool events happening here in little old Adelaide, but not to worry, here we are ready to roar and talk about something very close to us – Huntington’s Disease.

If you don’t know, Huntington’s is an inherited condition where the nerve cells in our brains break down over time – meaning, it is passed from parent to child and is neurodegenerative. If you are wondering why we say “our” that’s because, both of us are living with Huntington’s disease.

There is no cure at current for Huntington’s – but there are things those diagnosed can involve themselves in which help ease particular symptoms such as allied health therapy, health care support and medication.

Generally, you are affected in three ways – physically, cognitively and may lose perception managing personality and emotions. How these symptoms occur truly does vary and no one person living with Huntington’s disease is like another and this is why it is so important to see us all as an individual with individual needs

This week Lissy interviewed us about what life with Huntington’s is like for us:

Lissy: We will cross over to Mikkel first who has the following to say about living with HD. Mikkel, would you mind sharing your symptoms from Huntington’s?

Mikkel: Mental health decline over time has been my greatest issue. I am in wheelchair now, but my biggest concern has been the changes to my mental health.

Lissy: How do you cope with these changes?

Mikkel: I decided it was time to move into Supported Residential Living, I was looking for a few years, but I honestly didn’t know where to start, it was just me on my computer and I felt like I was chasing my own tail. My family helped me and found SACARE which has helped my moods improve. To be listened too and helped, someone is always around has been really uplifting for me. I also do some self-work now which I wasn’t doing and that’s helping.

Lissy: What do you think is needed to help others living with Huntington’s disease who haven’t yet sourced services or are maybe not getting enough support?

Mikkel: Look into services, or find someone to help, who can look into things for you and find you some options. There is so much help out there; it’s just the first step that’s the hardest when you don’t know where to go. If you are somewhere where you are not feeling supported, be open enough to speak up or get someone to do it for you or just be there as a companion.

Lissy: Thank you so much Mikkel. Absolutely amazing feedback for others to read.

What about awareness, how important is it for the world to continuously become aware of Huntington’s disease?

Mikkel: Awareness is very important from families, to carer’s, to community programs. The more people who know about our condition, the more people who can understand a person’s situation better. There is a lot to someone with Huntington’s you can learn about and by being aware you might be kinder and more compassionate.

There is a lot to someone with Huntington’s, and by being compassionate and kind you might just learn something new.

Lissy: Thank you so much, Mikkel. You are so very valued and for the record, you are doing an amazing job at life.

(The Briarholm Journo Squad: Mikkel, Melissa and Dylan)

Now over to Dylan, hello – I would love to chat with you about Huntington’s disease in light of Huntington’s disease awareness month, is this okay?

Dylan: Yep, I am passionate about sharing information.

Lissy: Thank you, Dylan. I can recall from previous blogs that you supported your mother through different stages of Huntington’s disease; you are an amazing guy Dyl. Is there anything that you want the public to know about people living with Huntington’s – maybe some things to remember when working with clients with a Huntington’s disease diagnosis?

Dylan: Understand our communication, read our care plan first and treat us exactly the same as you would other people. Ask us about our journey, it will help you become our friend. I was diagnosed at 18 and I am now nearing 30, I lost my mum to Huntington ’s disease when she was just 33 and I like to talk about these things so getting to know me for me and what I stand for is very important.

Lissy: Thanks Dylan, what an honest and fantastic response. What about you personally, what are some of the things you find the most difficult in relation to daily living with Huntington’s such as symptoms or common struggles?

Dylan: I can’t walk, I can’t drive and my speech is slurred which makes me have to repeat myself a lot which gets exhausting. I don’t want to use a communication board or non- verbal techniques yet, so staffs are very patient with me and we work together to get my words out, sometimes by spelling too. It is really annoying relying on van’s or taxi’s when I used to get in the car and drive, but that’s life and I still love it.

Lissy: Wow, all are very honest and real responses, Dyl. You sure are a fighter. You are also someone with such a positive outlook on life. What makes life so great for you?

Dylan: I get to go places with support, I get listened to here at SACARE when I want something, I am still looked at Dylan not someone with Huntington’s. Having Huntington’s has taught me that you have got to do all the things you want to do when you want to do them.

If you would like further information on Huntington’s support and awareness groups in the city of Adelaide, please refer to the link below for The Huntington’s SA + NT spreading Hope, Dignity and Awareness.

Direct link for Huntington’s SA & NT for all of their services/details: https://huntingtonssant.org.au/

 


SACARE has many clients with Huntington's and we're passionate about supporting those with a disability in the best way possible, if you would like to learn a bit more about the types of care we can provide in-home follow this link.

To read The Journo Squad's last article "What Does Community Mean?" click here.

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