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