Tuesday, April 30, 2013

Sharing my story of Huntington's Disease | Toowoomba Chronicle

Sharing my story of Huntington's Disease | Toowoomba Chronicle

This is the 2nd paper that has published my story

my story has gone gobal

Guess what a man from germany has got my story for the newspaper and sent it to every HD associations around the world and I have been contact by a man from USA asking if my story could be put on his website. I wanted the world to know about HD and now it has started. I'm so excited and can't wait to start organizing australia awareness. Look out world here I came. Thank you to every person who shares my links, and read my blog and to everyone who has read my story. And to the newspaper who have published my story.
Somedays I wonder why I was put on earth  and now I know, I'm meant to make my HD mission to came together and see it through until I can't anymore. I have to do now before it is to late, so my kids are spared.

Monday, April 29, 2013

Information - Huntington's Disease

This information is from HD Qld. I hope you find it useful.

Huntington's Disease (HD) is an inherited neurological condition. This means that it is a disease of the brain which affects the nervous system and is passed down through a family line.
HD is not a condition which is evident at birth, In fact, symptomswill not usually appear until a person is between 35 and 45 years of age.
HD is caused by a defective gene. A gene s a basic unit of inheritance. Genes are the means by which a child inherits all his or her characteristics. For example there are genes for height, eye colour and baldness. Genes are transmitted to a child at the time of conception. A person carries this set of genes all his or her life. All our genes are in pairs and we inherit one member of the pair from our mother and the other from our father. Sometimes and alteration occurs in one of the HD genes then symptoms of HD will eventually appear.

HD and inheritance
The altered gene for HD id passed from parent to child without regard for sex. In other words, it can be transmitted from a mother or father affected by HD to either a son or daughter.
If a person inherits the altered gene for HD, eventually symptoms of the condition will begin to appear. For a small group of people these symptoms may be evident before the are 35 and for another small group there may not be signs of the disease until age 45.
Sometimes people who inherit the altered gene for HD will die before the symptoms of HD appear. They may be involved in a accident or have some other illness such as a heart attack. In such cases doctors or other family member might not know that the HD gene was present.

Any child born to a person who carriers the altered gene for HD has a 50 per cent chance of inheriting the altered gene. It follows that the child equally has a 50 per cent of not inheriting the altered gene. It does not matter whether or not the parent is displaying symptoms of HD when the child is conceived since the symptoms of HD usually appear after a person has begun, or even completed a family. What matters is whether or not they have the HD gene in their genetic make-up. If a person does not inherit the altered gene for HD then his or her children are not at risk of developing HD.

There are three groups of symptoms for HD: physical, cognitive and those affecting the personality or emotions. There is no specific order or sequence to the symptoms for HD and the experiences of one person may be quite different from those of another.

Physical Symptoms
In the early stages of HD a person is likely to experience some mild twitching of the fingers and toes, and perhaps the face or limbs. He or she may feel a little less co-ordinated, fumbling or knocking things over. As the disease progresses, walking may became more challenging and, as coordination decreases, people affected by HD may begin to trip and bump into objects or people in their paths.

Cognitive Symptoms
The term "cognitive refers to tasks of the brain concerned with knowing, thinking, planning, judging and remembering. In the early stages of HD there may be little evidence that these functions have been affected, but gradually some subtle changes will be detected.
Short term memory may be reduced, with a person affected by HD forgetting small recent happenings, such as the need to pass on a telephone message, turn off the kettle, or attend an appointment made yesterday. Tasks requiring intense concentration or much planning and judgement may become more difficult. Examples may include arithmetic tasks or planning to keep up with heavy business schedule. Over time concentration for activities such as reading and demanding conversation may be affected.
While HD does impact upon memory, planning, and judgement, it does not affect a person's orientation. In other words, people affected by HD can be expected to know and recognise the people about them as well as know where they are, and what day it is.

Personality or Emotional symptoms
As with physical and cognitive changes brought on by HD, changes to personality will begin subtly. In early stages of HD, a person may be more irritable or moody than previously. Depression is common to about a third of all people affected by the condition. Some persons affected by HD laugh or smile at inappropriate times or may feel like crying for no apparent reason.

Final note concerning symptoms
The expression of HD varies from person to person. While some of the cognitive or emotional symptoms may be quite pronounced for one person, they may be much less for another, However, for all people HD is progressive.
Perhaps the most common symptom of the condition is chorea; that is dance-like or jerky movement of the arms and legs. These movements begin as twitches and gradually increase over a period of years to larger movements. A small group of people affected by HD does not experience chorea. For this reason the condition previously know as "Huntington's chorea" is now called "Huntington's Disease.

Symptom Watching
Symptom watching is a natural and understandable response to being at risk to HD but it can also be very stressful. Many of the early symptoms of HD such as fumbling, moodiness or forgetfulness are also experienced by members of the wider population(not at risk to HD), particularly when they are under stress. Those at risk of HD may misinterpret such feelings, behaviour or actions as HD. If this happens they may find themselves entering a confusing cycle with anxiety leading to irritability, fumbling and / or forgetfulness with each of these again being interpreted as symptoms of HD.

If symptoms watching and concern about being at risk to HD is interfering with your ability to carry out normal activity it may be wise to seek assistance from a GP or counsellor.

Caring for a person with HD
One of the questions most asked about HD, once a person shows symptoms of HD, is "How long does it go on?". This is difficult to answer since HD affects people differently. It is usually a slow, but progressive condition. An affected person may live for 15 to 25 years or longer after developing the first symptoms.
People with HD can improve their quality of life by attempting to remain active physically, mentally and socially. Walking, reading and maintaining friendships are some sample. In short the person with HD should attempt to live as fulfilling a life as possible.
At this point there is no cure for HD, but some symptomatic treatments and support services are available to individuals and families affected by HD. Advice concerning medical treatment should be sought from a GP or specialist.

Reflections Book

Good afternoon
I was sent this book from Christine at HD Qld today, so I can put it out at mum's room. I thought it was a wonderful idea and would like to share it with you.I can't add it this blog because it isn't a photo, so if you would like a copy of the book send my an email and I will send you a copy.
Here is an outlay of the book:
Reflections front page
I was born...
Where I grew up....
School Days...
Childhood Friends...
My Father..
My Mother...
Brothers and sisters....
Marriage....Children...Other Relatives....My Closest Friends....Treasured Possessions.....Memorable Occasions....Music I like.....Favourite TV Programs....Hobbies.....Family Pets.....Work.....Cars......Christmas Day....Holidays...Notes...Blank pages with border so you can print as many as you like and add them to your book. So you might make your own with help of these titles or I will email you one.Remember take it slowly and just take out what you have and bring the rest out gradually.cheers Jay

You may even like to make one for yourself if you leave in a home or close to going in one or your loved ones might like to make one for you. So when you go to a home the nurse will know a little about you. This book is for anyone.

Sunday, April 28, 2013

I devote my life to HD

I got published so excited i just can't hide, I'm about to lose control. When I wrote my story it took lots of rewrites and a load of tears. I wanted the newspaper to publish it but never thought they would. Some days I wonder why I was born and what I'm to do with my life but now I differently was put on earth to make the world aware of Huntington's Disease and devoted my life to making it happen.
I will be starting my fundraising for HD QLD next week. I going to get submitting my story to all the papers and see what happens.

cheers Jaime

More need to know about Huntington's Disease | Sunshine Coast Daily

More need to know about Huntington's Disease | Sunshine Coast Daily

I wrote this and they published it, omg I can't believe it.

More info and photo from my birthday visit with mum

hey everyone, These photos are of mum, the kids and I on my birthday, when we were putting my projects up in mum's room. We took out a mud cake for my birthday to share with mum, she sucked on the cake pretty well.

You are a very special mum
You will never be forgotten
You will always be loved
Your always in my thoughts
I love you to the day after tomorrow
Love always Jay,Tim and Kids
This is what I wrote on butterflies for the family tree in her room.
cheers jaime

My projects for mum's room and tips for visiting

Hello everyone,
I have been making things for my mum's room/area out at the aged care facility. I put butterflies hanging from the ceiling, so they are bright and attached to ribbons so they move. I put a big sign up for mum that said We love you mum/ nanny and hearts that say Your always in our hearts. I always did a square family tree with butterflies for each family member. I only did her children and their partners, her grandchildren, her parents, her sister and my dad her ex husband. I put their names, dob, title and a picture( which i hadn't gotten printed yet, so they will go up on my next visit). This family tree will help the nurse learn and remember who we all are and can talk to mum about it daily so she will always remember who we are and it helps simulate her brain. I have also started another project which is a poster photo board which will have a photo with a description under the photo. Which will be changed weekly on my visits Now you wondering why i did this one, will by having it will get the nurses to talk to mum about the photo and help her remember and it also helps the nurses have something to talk about with mum. After a while the nurses don't have things to talk to mum about and they thought it was a great idea.I also put a poster on the door and made it look cute while providing info on mum and photo i will be adding on my next visit. I have also made an exercise book in Sharon visitor diary, which her visitor can write what they talked about or add a photo to the diary. These will help the nurses talk to mum about her visitors and know what she has been up to. As you all will know it is hard to talk to some nurses and with shift changes it even harder from them to know what mum has done on their off shift. I have also taken a communication book out so any nurse or any other staff can commute with me and this way i feel close to mum, as i can't get out there everyday like to wish i could. And this way i know what she has done and if she needs anything. It's also hard when you miss a phone call and don't know who to call back, this way they just write it the book. I put colourful flowers and butterflies on her window so it looked bright and the light should light it up even more in the mornings. Everything I have done is to help mum simulate mum brain and help build a relationship between mum, the nurses and us.
I have also have some visiting tips for people with Huntington's disease: visit at meal times because people with hd love their food and help nurse care for the other people and when the other people have visitors at meals the nurses will be free for your person with hd. And some people with hd won't eat their meals if their loved ones aren't there. And your time visiting will be better spent. I also think reading a book to people with hd is a good idea because it's something they can't do anymore and it's great because sometimes there isn't enough to talk about and your time will be for fulling. And here is something to keep in mind when you are visiting your loved ones, the nurses will leave you alone to visit and will not interrupt your visit even if they have a job to do unless your visit is over 3 hours or the really need too. When you are visiting your loved one it helps the nurses take care of the others and when they have visitors they will have more time for your loved one. I always wonder why the nurses weren't doing anything for mum when i was visiting, so i asked Christine from hd qld and she kindling explained to me how it worked.
I'm going add photos now of mum's room.

I hope found this blog useful and interesting. The most important thing is take it step by step and take in what you have done and take the rest in as you do it. Don't overwhelm yourself and try to add or change things weekly so they are always fresh and new.
Thanks for reading about my project.
From Jaime
p.s Thank you to my loving husband for getting on the chair to put them all up for me. I hate heights lol

Tuesday, April 23, 2013

Monday, April 22, 2013

my mind

The lady i know as my step mum has passed away and it doesn't feel real. I have been grieving mum and slowly letting go but i always thought it would be her funeral first or my dad because of has heart problems. It really make me think of how short life really is and to hold my mother closer and not to give up on the her just yet. Life will go so fast and it will be my children helping me out even know i don't want them to take care of me. I would rather i put myself into care instead of being a burden on my children. My life goal is to make Huntington's Disease important to the world and help raise money to Huntington's qld.
hold your close ones close and appreciate them


Awareness Does matter

My story about huntington's Disease and my mother

Hello, I’m Jaime colley and I have Huntington’s disease. I feel like it’s my job to make people aware of Huntington’s disease and finding a cure. I’m watching my mother slowly wasting away and losing herself. She can’t speak for herself and can’t tell us what’s wrong or if she is in pain. She can’t eat solids and has trouble swallowing. If too much food gets onto her lungs, she will catch pneumonia. One day she will need to be tube feed. She has involuntary movements all day long and people are scared of her. She is losing her memory and soon won’t know who we are. She can’t go to the toilet for herself, so we can’t take mum out of the aged care facility anymore. She is becoming a stranger and the worst part is Mum is only 50 years old. It’s so hard to be with her but I don’t have a choice. As I’m watching my mother become this stranger and can’t do anything about it. My children will never know who their nanny was and what an amazing person she was. When I give my mother a cuddle it doesn’t feel the same anymore, it feels like there is no one left in the shell of her body. I miss my old mum so much and every time I go to see her I cry afterwards. It’s hard being in a daughter/carer relationship and sometimes I feel like I fail her. It was hard being her carer because not many people knew what Huntington’s disease is and what she needed. I had to fight for all the services that she had, with the help of Huntington’s qld. And even still fighting to keep her guardianship because no one understands the needs of people with Huntington’s disease and how it affects them. I don’t want my children to have to go through what I’m going through with mum and being her carer. I’m 28 years old and still don’t understand the full effect of Huntington’s until mum goes through them and I see it with my own eyes. I wouldn’t have been able to get through caring for mum without the support of Huntington qld. After I got the test results and saw that they were positive for HD, I had a very dark period in my life and thought what have I, done to my children. And without the support of a very special lady at (Huntington’s Qld), I wouldn’t of been able to get through it all. She made me see there is hope for my children’s future. I wouldn’t be where I am at in this part of my life and fighting for Huntington’s awareness without her. She listened to me when I had no one else and pushed me when I needed it. Thank you C. Here s the link for Huntington’s qld, without them Qld families with HD would be lost. http://huntingtonsqld.com/index.html .


This is my life and I’m trying to bring Huntington’s disease out of the darkness and into the light by using my voice to make the world aware of Huntington’s disease which is a terrible and painful disease for everyone involved.

Huntington's disease (HD) is an inherited neurological condition.

  • This means that it is a disease of the brain which affects the nervous system and is passed down through a family line.
  • Huntington’s affects men and women as well as all races and ethnicities
  • HD symptoms will not usually appear until a person is between 35 and 45 years of age and can include impaired movements, mood, speech and memory. As the disease progresses, symptoms worsen.
  • There is no cure.

I inherited Huntington’s disease from my mother and she inherited from her mother and my children have a 50% chance of inheriting this horrible disease. For me to spread the awareness about Huntington’s disease, I need you to help me and pass the message along. So please help me get/ keep Huntington’s out of the darkness by making the world aware of Huntington’s disease and help find a cure, so the next generation is HD free. I have a facebook page if you would like to join, Huntington’s Dis AC. If you think you may have HD or would like to talk/meet other people with Huntington’s send me an email HDAC131@outlook.com


Thank you for reading my story, kind regards Jaime Colley