Jules Musings

Thursday, August 9, 2012

Why the Brain Foundation?

This is just a tiny bit of why I have been and am raising funds for the Brain Foundation in the last event I ran in and the Bridge to Brisbane next month.

During the past seven years, the Brain Foundation has contributed over $3,000,000 to fund research by neurologists, neurosurgeons and neuroscientists in the following areas:

Alzheimer’s Disease and other forms of dementia
Brain Tumour
Deafness
Epilepsy (affects more 45,000 Australians)
Head Injury
Hydrocephalus
Migraine (affects more than two million Australians)
Motor Neurone Disease
Muscle Disease
Muscular Dystrophy
Various aspects of neurosurgery
Parkinson’s Disease (affects more than 35,000 Australians)
Peripheral Nerve Disease
Renal failure
Stroke (40,000 Australians annually suffer a stroke)
Vertigo, balance and Meniere’s Disease.

These disorders alone affect more than 2.5 million Australians, ranging from the very young to the very old. The ones in blue are the ones that I or members of my family have been effected by.

Brain Foundation grants have been awarded to researchers working in many institutions in all Australian States and Territories including:

Alfred Hospital
Australian National University
Children' s Hospital at Westmead
Concord Hospital
Flinders University
Garvan Institute
Gosford Hospital
Griffith University
Hornsby Hospital
Howard Florey Institute
John Hunter Hospital
Mental Health Research Institute
Menzies Research Institute
Monash University
Neuroscience Research Australia
New Children’s Hospital
NHMRC Clinical Trials Centre
Prince of Wales Hospital
Royal Children's Hospital
Royal Hobart Hospital
Royal Melbourne Hospital
Royal North Shore Hospital
Royal Prince Alfred Hospital
Sir Charles Gairdner Hospital
St Vincent’s Hospital, Sydney
Sydney Children’s Hospital
University of Adelaide
University of Melbourne
University of New South Wales
University of Queensland
University of Sydney
University of Tasmania
University of Western Australia
Westmead Hospital

If you would like to help me help them than please click here
You can find out more about the Brain Foundation here

Running!

On August 5th I took part in the Brisbane Running Festival. I made a new PB of 42:55. While certainly not the fastest on the day or ever its MY best so far :) My awesome husband came to support me and it was fantastic to run with the Fletcher family. I raised $170 for the Brain Foundation which was fantastic!

I did a weeny bit of damage to my hip which I am seeing the physio about today. It will all be fine though :)

I have signed up for the Bridge to Brisbane on September 2nd. My race number arrived in yesterdays mail. I will be raising funds for the Brain Foundation again http://fundraise.bridgetobrisbane.com.au/julia_robertson_4 for this one, there is however a bit of a twist.

This year they are running a "Hero Time" which means for every dollar raised they take 1 second off your Hero Time. The Hero Time is your race time minus the bonus seconds awarded for your fundraising. I will have until midday Friday 31st of August to raise as much money as I can to count towards my "Hero Time"more information here http://fundraise.bridgetobrisbane.com.au/event/b2b2012/hero_time

I'll be updating my blog for my 18 month brainaversary from Sydney this time. The wonderful Alonya and Rick are having me back for another week ♥

Monday, July 16, 2012

1 Year 5 Months

W O W

What an enormous month! I was in the newspaper for the Pride of Australia Award. No more news on that at this stage. I completed the 21 challenge. I built some websites. I started study. Lots of news on that one. I got some test results back and am having some medication changes. Chances are I will miss things in this post as I have a phenomenal headache right now but I will continue with this post all the same.

Aside from all the new things there are some not so new things. First of all the Brisbane Running Festival is only a few weeks away! I am raising funds for the Brain foundation for this run and for the Bridge to Brisbane on September 2nd. If you can help at all it is very much appreciated. There is no where near enough funding for brains. These guys cover just about as many brain related things as you can think of, migraine, epilepsy, Parkinson's, cancer, spinal injury and so much more. Why not go and have a look at their site and see for your self? In November I'll be doing Relay for Life as part of a team with my youngest son, my husband, My sister in law and my brothers.

As I said I have built some websites. I decided to play around and see what I could come up with and this is the result so far Colloid Cyst Survivors (including a mobile site), Julia Robertson Photography and last but by no means least a Fundraising page to help me keep track of what I am doing!

I started study on July 9! I'm doing a dual cert in Business and Business Administration. It's been a big leap into the world of study and so many other things. I am catching buses to and from TAFE each day, making new friends, doing homework, keeping up with study and tracking timetables. I am doing pretty well so far. I have come across one hurdle so far. I am going to have to talk to my physio about my left arm again. I am really struggling with the touch typing segment of the course as my left arm gets very tired very quickly and my hand eye co ordination seems to be a bit off there. I'm sure I can either build up the strength in that arm or work around it somehow, it;s just a bit frustrating at the moment, not to mention very painful.

I am loving studying! I can not adequately describe just how much more alive and "awake" I feel. I need a bit more sleep at the moment on school days and have to manage my time and energy more closely at the moment but its fantastic feeling mostly "normal"

Results and medication changes. I went into hospital for some tests last month and the results were "delayed in the mail" I had a copy sent to me by my GP last week and will have to go in and see her to discuss the rest of them but the bit I did understand in among all the graphs and EEG lines was that I do not have sleep aponea. YAY! I took my leg scan in ( the one i had done some months ago and forgot about) and discovered that the lump the radiologist said was an over developed muscle is actually a lipoma. Nothing to worry about. It can be removed surgically if required.

I am going through a change of medication at the moment. The old nasty medication which has been making my hair fall out, giving my a fantastic facial rash and killing my kidneys, is being phased out and a new medication is taking it's place. It's a long process to get the new medication up to a suitable level to start stepping down the old medication to get rid of it. I "should be off the old one by the end of August all things being fair and equal. The new medication has had some "interesting" side effects so far which seem to pop up for a few days each time the dose increases. Mostly headache and nausea (nothing new to me there) and burping orange juice flavour! Very odd indeed considering its Blackberry flavoured and I don't drink orange juice.

Wednesday, July 4, 2012

Big update (not waiting til 17 months)

Big News Part 1

My lovely friend in Denmark, Ted Ewen, nominated me for this award! Nominations closed yesterday. This article appeared in the Logan West leader and the Albert and Logan News on June 27th.

Note it was the Brisbane surgeons who were unwilling to operate, and although benign, it was life-threatening. A benign tumor is basically a tumor that doesn't spread to other parts of the body. A tumor is a mass of tissue that serves no useful purpose and generally exists at the expense of healthy tissues. Examples of this include tumors which produce a "mass effect" (compression of vital organs such as blood vessels)

Colloid cysts, while uncommon, are important to identify correctly because of their association with sudden death. They are relatively rare and account for less than 1% of all brain tumors in adults. Because of its location, it can cause obstructive hydrocephalus and increased intracranial pressure. Mine was causing intermittent hydrocephalus and gradually pushing one half of my brain around. This caused seizures aside from constant extreme pain and nausea.

Lesson for the day Benign does not mean not life threatening!

Big news Part 2

Yesterday I became a student again!

Monday July 9 I start my Dual certification in Business and Business Admin. I am really quite looking forward to it. Today I had an meeting with Student disability services as I have an ABI and epilepsy to talk to them about my course and what I may or may not need help with. I have to say I was not greatly impressed with the meeting. However I have a stubborn streak a mile wide so I am even more determined that I ever was to not only get through this course but to do it with as little assistance as possible! My stubborn-fu is strong.

Meanwhile I have gotten my hands on a year 10 mathematics book to try and reteach myself some of the things that went missing after surgery. I have a few other books coming in the mail as well.

Life is a huge new adventure for me in SO many ways! I am choosing to enjoy it as much as I can and make the most of every part I can get my hands on. Life is far too short to worry about the what if's. Get out, do the things that inspire you and make your heart soar. (as long as you aren't hurting anyone else) Try something new or something you always wanted to try but didn't have the time, energy, confidence (whatever excuse you came up with) to do it. At worst you wont like it but at least you've given it a go, who knows you may like it and you may just be brilliant at it if you give yourself half a chance.

Be your own advocate! No one can live your life expect for you. You'll do a beautiful job of it!

The Breakfast Flower

Back in October 2010, thoroughly sick to death of taking a armload of medication every day I decided to get creative with it. The Breakfast flower was born. Since then I have photographed the devolution and now evolution of the breakfast flower and my (morning) medication as changed. Over the next several weeks my flower will be altering fairly often so I thought I would explain it here!

April 2012

July 2012

Thursday, June 28, 2012

ABI difficulties, ways to work through them

This is just a little bit of the stuff I'm working through with and around ..........

I have some Visuo-Spatial deficits post op. I find this to be embarrassing at best, frustrating and something I am trying constantly to work with. I have just ordered a high school certificate mathematics workbook online to work my way through. I am also using Lumosity.com for brain training as well. If you can think of anything that may help I'd appreciate feedback and suggestions. The bolded things are things I have problems with. Some things I have had difficulty with I have modified the way I do things,

Cooking I use a recipe and go through it before I start, follow it to the letter as i go through and then check it again at the end. I am finding if it is something I cook a lot I need to check the recipe less.

Sewing I have to use a pattern and follow all the instrustions or things just dont work. Pre op I didnt use patterns at all... this is particularly frustrating to me but I realise that I may not get back to patternless sewing.

I am going to go on Monday to see about starting study again. I expect it will be a challenge but I have to start somewhere!

Below hijacked from SynapseA Closer Look at Visuo-Spatial Skills

While deficits may occur within each sensory system, the area of visuo-spatial is often more dramatic. Visuo-spatial deficits may include difficulties in the following areas:

drawing or copying objects

recognising objects (agnosia)

telling left from right - eg on my flight to Sydney my brain kept telling me i was flying in the wrong direction because the sun was on the "wrong" side of the plane.

doing mathematics (discalculia) - I actually have pieces of my mathematics missing. 6 times tables, theorem etc. Some I can do if i have pen and paper most I cannot do in my head

analysing and remembering visual information - this kills me. For a visual person not to remember peoples faces or be able to remember patterns is a bit like cutting my arms off

manipulating or constructing objects - Cannot sew without patterns or instructions ..... totally not the old me

awareness of the body in space e.g. climbing stairs

perception of the environment e.g. following directions.

People may experience select difficulties or several deficits depending upon the nature of their injury. One well known syndrome involves neglect where the individual ignores certain aspects on one side of the world in front of them, which is most typically the left hand side. For example, a person with neglect may ignore food on the left side of a plate or fail to copy aspects on the left side of a picture.

Retraining skills

One approach involves retraining the skill until the person regains, in varying degrees, the functional skill. Retraining typically involves repetitive and intensive exercises for a specific skill or task e.g. practise at drawing an object while receiving feedback. This approach tends to be more effective with specific skills.

Changing the environment or expectations

A second approach involves modifying the environment to provide more support or reduce the demands of a particular skill. One example may involve building a ramp or fitting a handrail for a person who finds it difficult to climb a flight of stairs to their house. Sometimes, the change in the environment can be as simple as shifting furniture to ensure greater space when walking around the house. The person may also learn to adjust their expectations and educate other people about their difficulties.

Compensatory strategies

People often learn or may be taught a range of strategies to compensate for visuo-spatial problems. These strategies may be as simple as a person learning to turn their head or body to scan their environment, or moving objects into their ideal position. A range of specialised technology or equipment may also be available to fit into a person’s home or assist with community access. Some external prompts may include colour stickers for object recognition, bright lights on the floor, musical or sound prompts, stencils or transparent paper for copying, hand rails and other safety devices. An example of a compensatory approach for object recognition involves the person learning to rely more upon other senses such as touch, hearing and smell. They may choose to shut their eyes to avoid inconsistent information from the visual system. The rehabilitation strategies described may be developed by a neuropsychologist, occupational therapist or physiotherapist. The eventual goal of the programme is greater independence and use of self-management strategies. However, family members, friends and support workers can provide valuable support and reinforcement of rehabilitation techniques.

Thursday, June 21, 2012

The end of the 21 challenge

Today is the last day of the 21 Challenge and I have completed mine. I thought i would post the link to the donation page one last time and post all the photos I took for the challenge in this post. I hope you enjoy then as much as I have enjoyed the challenge!

They will remain on Facebook, Google+,DeviantArt and on RedBubble :) http://www.openfamilyfundraising.org.au/personalPage.aspx?registrationID=447845&langPref=en-CA

All funds raised go to assist homeless and at risk youth in Australia. the Challenge ends June 21, our longest and probably coldest night of the year.