Thursday, May 30, 2013

My visit with mum today

Went out for Mad Hatters day at bupa today. It was crazy with all the different hats and to see all the different people. The staff put on a great show and got right into it. It was so exciting and fun. They were dancing and singing. Byron even got up from his sit and did the chicken dance. Everyone had hot dogs for lunch. But mum had her usual lunch which I feed her and an extra helping of cheesecake lol. Mum had a great time. It was great to see the staff like that and I picked up on some things which were great to know. Can't wait for the next crazy themed event.

When the mad hatters was over, I told the kids to wait near the chicks while I helped mum to her walker. We saw the chicks and had cuddles and I rubbed the chicks against mum's cheek and she loved it. Mum was really good at holding the chicks and eased up when I told her too. Mum is really strong and doesn't know her own strength. 1 of the eggs was starting to hatch, so there will be other chick tomorrow. It was great Wyatt finally touched one and even gave it a kiss.

Then I took mum back to her room, checked the visitors book and wrote in it and then read to mum. She was moving a lot today and didn't really settle like normal, when I read too her.

I was so exhausted from the visit with mum, I had to come home and sleep, (Which I did all afternoon).

thank you for reading my blog

Tuesday, May 28, 2013

Hd stories

If you have a HD story that you would like to share. I'm more than happy to put it on my blog for you. Email  me you story and give me the permission to add to my blog and I will.

Hoping to hear other people stories and How they are coping with HD

my visit with mum yesterday

Went out later in the afternoon to see mum yesterday. When walking in the front door I ran into Staff that know and Had a good chat with them about mum and They have seen the spark in mum lately too. They were talking about the petting zoo that came out to bupa and how mum sit there so content and didn't want to give the sheep back. Mum couldn't stop smiling. The hatching chicks arrived yesterday, so mum will get to see them today. And they were also telling me about mum making a hat for mad hatters day on Thursday at 11am. So I will be attending mad hatters day and get to see the chicks/chick eggs. The kids are going to be so happy. I can't wait to see mum's face.

I saw all the clothes bupa bought for mum last week and they are great. She is so skinny and bony.
I told her everything that was going on and then read to her. She wants chocolate for her birthday again. I have been thinking about some food that she could eat and I could leave them in jars so she can eat whenever she likes. Mum's 51st birthday is on Saturday, so I will add a little extra to her treats. It's so sad to think she is only 51 soon, In the body of a 90 year old (so to speak). I will have some photos of my next visit, (no batteriers for the camera yesterday). So i will buy some tomorrow and be ready for thusday visit.

Life is too short, hug your loved ones and tell them you love them before it's to late.

Monday, May 20, 2013

What to tell someone when they ask " How is mum going". Please I would love to hear your suggestions.

So I get asked "How is mum going" from people that know her but not all know about what Huntington's Disease is. I don't know what to say. I usually say good or good day or bad day but it never seems enough no matter what I say.
So here is the question should I tell them everything I know? or come up with one standard answer? or tell them little?

If you have a suggestion let me know.
or have been in the same drama let me know what you did.

I would be great to hear you answers.

my visit with mum

Had a visit with mum on Friday afternoon. She was in her room with a male nurse having a drink to help her weight. I feel uncomfortable about a male nurse since all the ones I have seen  are female. He was very kind. I took mum some clothes out for mum, she goes through a lot of clothes and shoes with all the movements. I ran out of things to talk about after 10mins, so I read to her and she loved it. mum went straight to sleep. I remember when mum use to read, she would read for a while and then she would fall asleep and sleep for hours. So it was a short visit but good visit. The kids are even getting better at behaving when out at mum's.


Tuesday, May 14, 2013

My visit with mum today

Went out to see about the new doctor program they are going to start out there within 2 months. It sounds really good but If cause I'm worried that the doctor will know a lot about HD. So the gp will be able to treat mum the best. But apart from that it really sounds good and more hands on then they have now. Bupa has got it going in some other aged care facility in australia, So it should be good. If it turns out like it should with problems, I'm going to like it. There will be a meeting with 2 months to meet the new gp and then I will be happy to talk to the GP and see what the GP is like.

After the meeting we went down to visit with mum and we bought her a cake for mother's Day and bought her chocolates and i put over 1000 photo in her digital photo frame. She loved the cake, it was so moist.
We had to the family tree today- dob's for some family.

Then we did little clean of her room, then I read to mum and the kids played outside the room. Then I wrote in her visitor book.

It was a good visit, cheers Jaime

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Please share my story around and help me with my life mission to make the world aware of Huntington's Disease.

Friday, May 10, 2013

mum's visit today

I had a backup care plan meeting today and it went well, feeling much better about everything. I'm so stoked about them letting my put hd qld raffle tickets out there. So everything is okay but still waiting for some answers.

So after the meeting, I went down to visit with mum. She was half naked, just went to toilet and couldn't put her pants back on. So I helped her put her pants on.
I told her about mother's day and Told her about my meeting and showed her the visitor book and communication book. one of the staff put some pictures of recent events in it for me and I saw a different side of mum. mum has the most beautiful natural smile ever. She was holding animals and cuddling them. It was so great to see.
Then Tim and the kids came and told me my sister was looking for me and it was my fathers birthday. I had forgotten my father's bday, which is very unusually because I do birthdays to the max. So I was desaturated and need to go and say happy birthday to the best dad in the world. I knew it was a short visit with mum but I felt so guilty. I couldn't think about anything else except what a bad daughter I was. So I told mum we were going and she broke down and was trying to say something to me and I couldn't understand what she wanted. She was crying and I couldn't understand it was so bad. So I asked her to show me what she wanted. She got of the bed and grab the Danielle Steele book i read to her. So I read her a couple pages of the book and then said goodbye, I will see her for mother's day.
So hard when she cries but I guess she just needed me to read to her. I love her so much.

Thursday, May 09, 2013

Todays visit with mum

I went out to see mum today for mother's day high tea but they didn't take her up to it, so they bought some snacks down to us. A little bit disappointed but had a fun visit with mum and clean out her room. We got rid of all her bigger size clothes, made a check list and I will be putting the request in tomorrow at my meeting. It took forever and I'm exhausted. Mum has her thumb dressed but they can't figure out what happened. These things happen i guess, i wish mum could talk. I read to her today and she loved it and relaxed so much, she couldn't keep her eyes open. I can't believe how still she was. They nurse were really good today and even offered my kids food and drink lol. I kids were so spoilt today.

Wednesday, May 08, 2013

my visit with mum

I went out to mum's today for exercise class and it was so great. Mum was like a little kid again and  hitting the ball, so it stayed on the parachute. At the end she was throwing the ball to me. She has a strong arm. Being there was so much fun, I going to go again soon.

Talking to mum as I always do but today it was like she know what I was saying and gave me a smile, a couple of words and a shock look. I was like she was responding to what I was saying. It was amazing, I haven't feel like that in awhile. I love my so much it was like she was just another of my children. I stroked her hair, comforted her and played with her.

While I was there i saw her finger nails were long so I asked if she wanted me to cut them. I was cutting them and then started filing them and she said 'pain', so i stopped. I saw her thumb and it was yukky big spot were the skin has came off. They staff hadn't even noticed it, but once I told them about it they said they were going to dress it within 30 mins. So I will check on it tomorrow morning when I go back.
It feels like I live there this week, 5 visits this week. So much on this week it's great being busy but I'm getting a bit tired. We need a new bed lol, ours is lumpy and hard.
I have nearly finished mum's family tree this week just missing two people. I went to print them up and they weren't on the card. So I will get them done.

I will be adding more photo's now.
mum's thumb-

Mum's family tree and a photo of the poster photo board I made-

Photo's of mum is she beautiful-

kids and I in mum area today-

good night to all

Tuesday, May 07, 2013


Why I'm always moody will maybe because i have depression and its the same with the rest of my family are really moody. It's because of depression or because of early symptoms of HD or could it be genetic. I don't understand why I'm moody but I do know I don't choose it or want to be or to be rude. I have many different feelings are have a lot of different moods, I can't help it. It's who I am and I have to live with it, so should the ones I love. And they should understand I can't help.

I have been moody for so long I don't know when it started. It's just like the stubbornest from my father It's within me. I have very different moods like irritable, times when I can't stand to be near anyone, mental breakdowns times, exhausted, cranky, snappy, panic , anxiety, caring, loving, funny,
go getting moments, brave moments, the list could go on but the point is the same. I'm a very moody person and the ones I love should know and understand that this is me so except it.

Mum visit and How much I need to her

I went out to see mum today and she had a good day. I talked to her and she didn't talk like always. It was good to talk to someone about some issues, even if she didn't understand. It was good to get those issue off my chest. I love mum so much. She is like bones i could feel her spine when i was rubbing her back. It was good to feed mum today only a little mess lol. It was weird out there today all this people saying hello to mum and their face were of shock. I guess because she doesn't have enough visitors. I haven't seen these ones today, i guess people visit on different days. My visit aren't on certain days. But everyone loves her and have warm greetings towards her. It's was good talking to her I told her what was going on and about my story and getting published, but who know if she understood it all. She tried to smile a one of my comments which was strange but mostly I talked and she moved around. She had trouble staying on the couch today and I was worried about her falling off her bed. We talked about mothers day and what she wanted and just as I was about to say chocolate she said 'chocalate'. Mum has such a sweet tooth and I miss watching her eat her chocolate. She more like sucks it now. I know this is weird but I really just want her to say 'I'm proud of you'. I know it will never happen because she doesn't understand and can't talk but I wish with all my might she could. I think wonder if my kids are going to say/need/want the same from me. So I'm going to leave them a letter for each of my kids, so when they need me and I can't be there for them. The letter will be there for them and say everything they need to hear. Just like the other things I will have for them like the necklace with 'Always in your heart' and the bracelet with ' I will be watching over you'. 1 for their wedding day and 1 for when i die. Tim and I have been talking about it for a while. I want me kids to know that I always there for them even when I can't be. I will be watching over them in heaven.

Anyway I can't stop my kids having HD but I can prepare them for whats to come.
I love my kids with all my heart and I know mum loved us.

Friday, May 03, 2013

people's judgement and why it hurts

You know what ignores me is when people judge me and all my family. We didn't have the best up bringing but our parents did try their best. We have tired hard to keep jobs and make something of ourselves but it's hard when you have depression/anxiety/panic attacks.It's hard enough to get up everyday and look after your kids and keep a job and take care of your husband plus deal with everything that is going on with mum and watching her a wondering what is going to happen next. Are we going to be like mum. What's going to happen to our kids. Since I could remember I was told that I was going to look ever mum and that my sisters have Hd but I never understood it, only realised something bad was going on. I wish i understood HD and had seen it for myself so I could be better prepared for it now and made different choices in my life. This is why I  have started my mission to make the world aware of HD and with my blog maybe others will understand it's not easy life with or around people with HD.

If you know someone that has Hd or something else, don't judge them or look down on them or call them good for nothing. Because people who don't have HD or have a loved one with HD has no clue what we go through from an early stage of life. Your shale not judge us because we are special and need care/loving not judgement or stupid comments. The thing that upsets me the most is this person is extended family (not blood).

I do wish with all my might to own a house so my kids will always have a stable home and to make sure they never have all the problems we have. But it will never happen and I don't know if I will be here to help them. Each person with HD is affected differently and I could be worst then my mum. She won't even know us soon enough. All I want to have a stable home for my kids, so when I'm sick or have HD symptoms I won't have to worry about them. I want the years I spend with them to matter.

Wednesday, May 01, 2013

My Mum and my feelings about Hd part 2

More of my feelings and struggles with keeping mum going and caring for her even when she is a aged care facility. My job is never done and I glad to be there for her. My mum wasn't the best mum in the world but I do believe with all my heart that see tried her best. Without my beautiful mother I wouldn't be here on earth and wouldn't have my most precious children. I just hope I will make my mum proud of me and do something extraordinary with my life.

Over view of a care plan meeting with the staff at mum's aged care facility. I hope you get some tips from it and I hope it makes you understand more about what people with HD go through.

I had a meeting with the staff  to discuss how mum was going and update the care plan. We talked about clothes and they are organizing new clothes and shoes for mum. As mum tends to go through a lot of clothes. She wears them out with all the movements. Her shoes have holes within weeks.
We talked about Dr win neurologist and getting a new referral so he can check mum tablets again and adjusted them, since she can't leave the aged care facility anymore.
With the physio therapist on Tues and Thurs mum does exercises or walking or plays with a ball, I was told mum loves playing with the ball since she is really strong. And when they go to those activities they stop at the cafe to get a iced drink.
I have asked for an assessment to be done within the next couple of months, so its there when we go back to court.
She has been going to bingo, they do it veryyyy so for the patients which is great and they had the local petting animal show come out and mum loved cuddling the animals and was onto the next one just as quick. They had a Anzac's day BBQ and had lots of fun. And they are having in the next couple of weeks is a hatching farm where chicken eggs will hatch and the get to watch and when the chicks are born they get to pat the baby chicks.
I asked about her feeding and she is still at the same pace and have lots of milkshakes and puddings at meals to keep weight on her. The dietitian is watching over her and making sure she has what she needs and has noticed her weight lose.
She is sleeping well as far as they know.
She has been using the walker really well, the only problem they have had is she goes too fast. So the staff have to walk with her.
We also talked about her smoking and what they told me shocked me. They offer mum a smoke and she will have it with a staff member with an apron so she doesn't burn herself but some days she doesn't want any smokes. They give her one when she wants it and if she is busy, she doesn't want any. I can't believe it after all those years and she finally slows down. Mum always said she would rather die of cancer than HD, so she never quit and they only reason she would get up was to smoke.
They are having trouble with mum keeping her pull up pants on and will find her in the morning putting her undies on, so we have decided to take away her normal undies and see what happens. I got the impression that they had everything under control and really cared what I had to say and even having a backup meeting, for all the answer I didn't get.
The aged care may have it under control but I feel it's my duty to be mum's voice and make sure they are doing there best for her.
From Jay

Jaime Colley stands up for Huntington's Disease Awareness do you?

hey to all,
I hope you all had a good day, I've been very busy and didn't get much sleep last night because I was so happy and excited. I still can't believe that the man in Germany picked up my story and delivered to all the hd association's all around the world. We are talk millions of people seeing my story. And the man from the USA going to put my story on a website with a photo in Sept. I'm so over the moon and still haven't grasped the full concept. I understand my reason to live is to make the world aware of hd and help fundraiser. I hope their are more people like me out there ready to help fund raise for hd and organize events for awareness. We need awareness to find a cure. I really need to make sure their is hope for my children and all my beautiful nieces and nephews. I have finally seen my path and what I'm meant to with my live. I was always ashamed for not achieving anything in my life but god was just giving me the strength and making sure I was ready before I undertake such a mission.
Having depression and Hd is not going to stop me because I need to make my life count for something and make my kids proud of me. I'm standing up and using my voice to make sure I use it before it is gone. This generation needs to stand up with me and make it count.

I'm Jaime Colley and I'm standing up and saying I have Huntington's Disease and I'm fighting for a cause close to me heart. Will you stand up with and spread my message to everyone you know.
Huntington's Disease is terriable disease and needs to be stopped. So pass the message along and the world will follow.