Monday, September 30, 2013

Dine Out for Disability

Over the weekend of Friday 4th to Sunday 6th October, hotels all over the Hunter are donating $1 from every meal to help support buy a much needed bus to assist people with disability get around.

The Dine Out for Disability campaign is put together by ConnectAbility Australia and the Newcastle and Hunter Australian Hotels Association.

There are over 50 hotels across the region supporting this campaign.

To find out which hotels are helping out visit

Friday, September 27, 2013

Cycling and Epilepsy

Thanks to Halley Weaver who has shared with us her article appearing on Bike Shop Girl which tells her story on the challenges of cycling with epilepsy.

Halley also shares her story via her blog

When you are triaged at the emergency room or picked up by the ambulance after a bicycle crash involving no other vehicle, the intake paramedic or nurse will write “FDGB” on your form. What super official medical term does this acronym mean? “Fall Down Go Boom.” It does get the point across, at the very least.

In 2009, I was going to the emergency room approximately every six to eight weeks for similar reasons. Part of it I was cycling more so naturally I was on my bike versus say in my apartment or walking. It made me a prime candidate for tipping over randomly. A few crashes I just stood up and dusted myself off, but several of them were pretty epic with full facial road rash, splayed out in the middle of road and no memory of how I actually ended up there. That last part was the most unsettling of the entire affair.

A selfie showing Halley on her bike with black helmet and sunglasses riding along a road in a forest
That’s when they sent me to a neurologist. It seemed that I had been what are called “absence seizures.” Chances are that I have been experiences them for a long time in my life and have never noticed them. I kind of freak out when I think of this, because I have driven a car a lot in my life and worry that I could have been driving when this had happened. Earlier in life, I would go into random crying fits that had been misdiagnosed as “hypoglycemia.” I very distinctly remember not being able to look at restaurant menus and see the words or formulate thoughts. The neurologist informed me that I was most likely experiencing what was called a “simple partial seizure” and having had them recently, I can attest all the orange juice and glucose tablets in the world won’t help, so while yes they do look like a low blood sugar crash, they are indeed not.

I had my first “grand mal seizure” during a bike ride in downtown Portland and hit a park bench. This was an extremely difficult and stressful time for me. I felt like my brain was trying to kill me. All I wanted to was live a car-free lifestyle, work at the women’s homeless shelter and continue my own business as a professional harpist (with a custom-made bike trailer for my full size folk harp). You know, the typical Portland Oregon lifestyle, right? I couldn’t really live that when I was riddled with migraines, my weight massively fluctuating from trying out new medications – and I already suffered from an overweight awkward childhood so this new struggle was just one more thing to add to my plate.

My neurologist and I struggled to deal with my daily migraines so that I could ride my bike again without the threat of seizure and we couldn’t figure it out until I came across something she didn’t think of. Allergies. I knew I was allergic to a few medications and chemical products, but in addition to them, I added gluten, lactose and egg to my list. Having a very severe latex allergy, I had never realized that banana or avocado were part of the same family, which while I loved and are very beneficial to most diets, unfortunately for me, they cause more harm than good. Cutting them out as well, cleared so many skin issues. It was actually about that time, 2010, I “went vegan.” I had already been eating mostly vegetarian due to the lack of dairy and egg products. My body has never processed red meat well and I don’t eat pork, so it was a pretty natural transition. The most difficult thing for me to break up with was gluten. Total carbitarian.

I want to smack myself in the forehead because it sounds so stupid writing this. You cut out the stuff that you’re allergic to and you stop being sick. I’m not a nutritionist, not giving you nutritional advice and I can only write what worked for me. And, let’s be honest. I still have seizures. It’s not all about food. But I did lose 70 lbs in less than a year, which I am sure was mostly because I was putting crap in my body that couldn’t be processed and broken down.

There are the good days and the bad. I have worked really hard to get to where I am. Charting when I have seizures. I have been on a bunch of different types medications that haven’t worked for me or that I have “grown out of,” meaning that dosage is at such a high mg that any more would be toxic so the doctor either has to supplement a different medication or change medications. There are literally dozens of different kinds of epilepsy that affect the brain. Mine is called progressive myoclonic epilepsy. In short, it means it’s going to get worse in time, but right now it’s really well controlled.

I love cycling and it’s my life. I ride with a primarily road racing team here in Portland, though my passion is cyclocross. I haven’t been able to race the last two years due to health reasons. My knee went out two years ago and I had foot surgery last year. This was related to a back fracture I had six years ago. Ironically related to the dysfunction in my right cerebral hemisphere, which causes discrepancies in motor skills, visuo-spatial, perception and coordination. Basically I FDGB. I am definitely looking forward to this fall and getting muddy.

Tuesday, September 24, 2013

October - Mental Health Month

Next week marks the beginning of Mental Health Month.

In NSW, Mental Health Month is led by the Mental Health Association of NSW and aims to increase awareness, and promote mental health and wellbeing for all people living in NSW. 

This year’s theme is Kindness: little acts, big impacts!’ This theme promotes kindness to oneself and to others as beneficial to health and wellbeing for everyone.

As part of the campaign a fact sheet called:Kindness: little acts, big impacts! has been produced.

You can also download this factsheet in the following community languages: Arabic, Bengali, Simplified Chinese, Traditional Chinese, French, Greek, Hindi, Italian, Spanish and Vietnamese 

Also available are fact sheets from previous years, which still have great, relevant information. These include: Celebrate Connect Grow  Wellbeing: Invest in Your Life   and 10 Tips to Stress Less.

The Mental Health Association also has two information services specialising in mental health. These are:

Mental Health Information Service 1300 794 991  - Information, telephone support and referral on issues relating to mental health generally. 

Anxiety Disorder Support Information Line 1300 794 992 - Focuses more specifcally on anxiety disorders. 
The operating hours are Monday to Friday, 9:00am - 5:00pm

 For further information including events you can get involved in, visit the Mental Health Month page via:


Friday, September 6, 2013

My Choice Matters

My Choice Matters has been created to help people get the most out of the system changes to person-centred support and live life their way. My Choice Matters is managed by Council for Intellectual Disability NSW with funding from the NSW Government.

To help people understand these changes a number of workshops called ‘Getting Started’ will be held people with disability and family members to hear  from people who have been exercising more control, voice and choice. The Getting Started Workshops run for about 4 hours (with breaks) and will talk about some of the changes that lie ahead with more person centred approaches and the introduction of DisabilityCare Australia (the national disability insurance scheme.)

The workshops will focus on the elements of a good life and encourage everyone to think what that might look like in your life. On the day of the workshop participants will be taking part alongside other people with disability and family members.

Participants will learn about new thinking and new ideas that will help you to get started and prepare for the changes ahead. Below is a list of when and where these workshops will be held.

  • Bega - 10 September
  • Wollongong - 14th September
  • Taree - 17 September
  • Kempsey - 18 September - Workshop for Aboriginal and Torres Strait Islander Communities
  • Tamworth - 19 September
  • Webinar - 21 September
  • Albury - 24 September
  • Wagga Wagga - 25 September
  • Griffith - 26 September
  • Sutherland - 28 September
  • Sydney - CBD 2 October
  • Webinar - 3 October
  • Queanbeyan - 4 October
  • Erina - 17 October
  • Ryde / Epping - 19 October

The ‘webinars’ can be accessed anywhere, as long as you have a computer with internet access. Details of the addresses and times of the workshops as well as webinar details will be given when you register. 

To find out more information or register you can visit or call My Choice Matters on 1800144 653.