“I’m not defined by Huntington’s. I don’t see myself as having a disability. I’m not Huntington’s. I am Jane”

Watch Jane tell her story on a video:

 

Jane Williams is highlighting the issues facing those living with the condition. Jane is supported by Glasgow Supported Living and Glasgow Social Opportunities in the East End of the city. Moments earlier, she would have us cracking up with laughter, telling us about a recent trip to a bowling alley and how proud she was to get a strike, despite it being 2 lanes away from the lane she was actually bowling in!

Having cared for her Dad, who also had Huntington’s disease, Jane knows all about the daily challenges the condition brings:

“Living with Huntington’s is the worst neurological disorder known to man. It’s genetic and affects your balance, your thought process, your brain and everything else.

I’ve suffered for nearly 25 years. At the start, symptoms appear like falling about. People think you are drunk. Also, you get mood disorder and depression. Every part of you is affected by Huntington’s including your speech.

Day to day life is a challenge to do small things. Like fastening up your belt or laces.

Cooking is a problem. I can’t feel the muscles. I want to take out an oven tray and the tray is hot. I can’t feel it and I end up with first degree burns on my body.  You can’t feel how hot or cold water is.

I still do normal day to day things. But inside you are running a marathon because of the constant movements.

I need to eat 5,000 calories a day.”

However, Jane insists she doesn’t want her own kids to go through what she went through:

“I can’t ask my kids to do anything for me ever. I always do it myself. I was my Dad’s carer for years.

I witnessed my Dad, everything my Dad went though. I’d never ask my kids to do that. That’s not their job.  I’m quite strong. No, they are not doing anything for me.

I ask for support from others, it is better. It makes a big difference.”

Huntington’s Disease is a rare condition. UK research carried out in 2012 found the figure for those affected by the condition to be about 12 people per 100,000.

Because it is so rare, there is limited understanding and specialised support available. Jane has had some bad experiences with social workers and care providers in the past. But thanks to her MSP and local councillor, she was moved into a wheelchair accessible house with a wet room which dramatically improved the quality of her life.

Jane is also delighted with the support she gets from Glasgow Supported Living and Glasgow Social Opportunities:

“The staff here listen to you. They are respectful. They talk to you like a person. I love it, it is so good.

It is important people supporting you have an understanding about Huntington’s. Some don’t have a clue. If they don’t understand the condition, it won’t work.”

Service Coordinator David Carr explains having the right kind of support across multi-agencies is important:

“Communication across all the agencies involved is one of the key elements. I’m in constant communication with the social worker. I’m in communication with Glasgow Social Opportunities. Which are probably a benefit to us and benefit to Jane.

On top of that you have occupational therapy, speech therapists as well. There are a lot of different people and it is important to communicate, ask questions of them and feedback on a daily basis because it impacts on all of us.”

Turning Point Scotland is going to be featuring Jane’s story in various different ways over the next few months.