Monday, July 27, 2015

Hd denial

To be in denial about Huntington's Disease is crazy. Accept it move on and learn about it research it. Found out what is going to happen to you and your family and plan for it. Write it all down. Knowing i have hd is a gift because i can and will plan for it. I give myself 15 to 20 years to live anything after that is a bonus. Then fight for yourself and your family.
Don't be assumed by hd
Make people aware of hd (the more people who know about it the better. It doesn't take long to teach people about hd.)
Stand up and say i have hd and I'm fighting it everyday
Take eveyday at a time. It's okay to have a bad day and cry
Most of all tell the people you love that you love them because you never know when god will take them back.
Don't sit in the dark feeling hurt you have hd. Of course you will hurt hd sucks. Come into the light and live life to the max. Make the time you have left so full you will not have regrets about living your life.
I love you my family
Most of all my 4 beautiful children and  my wonderful husband.  You are my world.

Thursday, July 23, 2015

We need hd awareness in Australia

In Australia no one knows about hd. We need more support here in Australia but we won't get it without awareness. we need to help us please. I went through a lot of shit with trying to get services for my mum because the people we are dealing with had no clue what hd is. She was under the age of 50 when trying to get services to came out to help her. It took 1 year to get 1 agency to came out and shower her for me. Thousands of loop poles and in the end you don't get much help. Government is the worst for not helping our hd people because they have no clue about the bullshit struggles we go through everyday. we need help or this will never change.

Tuesday, July 21, 2015

My biggest dream

My dream. Is to have our own house where i can be taken care of for the rest of mylife and have a stable home for my family. If we had a house tim could take care of me until the end and take care of any of our children that have hd in the future. So they didn't have to worry.
Biggest regret not buying a house when i was 18 when i still could work.
Having a disabled house for the future is so important.

Sunday, July 19, 2015

The lion's mouth opens

Just watched the documentary the lion's mouth opens. It reminded of my own testing. I miss mum everyday and feel like i don't know her. I have 4 kids that aren't going to know me. It hurts so bad that i have given my children a 50% chance i having this horrible disease. It doesn't feel like a 50%. It will ruin all the lives around me and there is nothing i can do about it. Huntington's disease is going to kill all my loved ones. I pray that my kids don't have it. I don't care what happens to me. Please god don't let this horrible disease kill my babies. Amen. I'm so scared for the future for me and all my loved ones.

Monday, June 01, 2015

Happy birthday mum

Happy birthday mama i miss you more than words can say. I'll i want is a cuddles for you and to tell you how much I love you. you may not have been a prefect mother but your were prefect to me. I miss you everyday the pain never goes away. Until we are together again know i love you and wish more than anything that you were here in body to see my kids grow and be a wonderful nanny to them.
Always love you. Always in my heart.
Never forgotten love always your daughter.

Sunday, May 03, 2015

Huntington's disease checkup

So i have some huntington's symptoms. So i went and saw the hd team on friday at the royal brisbane hospital.
*My mind is slower than it was in 2011. Memory, decisions making, concentration, etc aren't so good.

*My body is alive and slight twighting ( they are worried about it just yet they say it not too bad)

*my depression is really bad (they are changing my dose)

Huntington's disease is neurological (brain disease)
It's like having mental health problems, Parkinson, dementia all at the same time.

I have tried to talk to my kids about it and what im going through.

Thank you tim for being supportive.
Love you all xoxo

Tuesday, April 28, 2015

Hd progress pic 10

Huntington's symptoms. ?

I have been worried about something of late......
Lost of interest
Contraction lack of
Can't make decisions
Slight twitching hands n feet
Muscle spams
Memory short term
Fatigue never can get enough sleep
Spilling food n drink down my front
Speech problems stuttering getting worse
Body feels alive feels like it moving when it isn't
Mind getting slower

Hubby and I have been picking up on these things more and more over the last year....
So is it me being a mum of 4 (9,7,5,10wks) busy life or
do i have huntington's symptoms
I will find out friday at hd clinic