HD Australia

The 28th March is HD awareness day!

I will be in Melbourne for my Aunt (who has HD) birthday...so maybe ill have to get some things to hand out on the plane!

Michelle Are you coming to Melb just for your Aunt's birthday or are you doing some awareness stuff as well.Are you going to the Holmsglen conference.? I have just gone to find my newsletter & had forgotten about this event I shall ring tomorrow to see if I can still get in, If so maybe we might catch up. Also Debbie are you going? It would be good if we did catch up. I'm meeting my neice from Tassie's Mum on the 29th in the city to talk to her about Hd There is still lots she's not sure of as we all do but a bit of sharing is always good.

Sorry Michelle you are having a down time right now. What else can I say! Except to say thanks for all your work & time you put in for us all to make our lives easier. You make a huge difference.

I still haven't got the courage to do the chat room, but my 16 year old granddaughter will be with us tomorrow night so will see if she can help old Nana to get on

Bye from Jan

Hi Jan...yeah im just coming for my aunts birthday with two of my brothers...maybe on the plane though i could get up and give a talk about HD haha...im sure my brothers would love that!  

I havent heard about the conference..if you have any information i wouild be interested to have a read. What date is it on? I will be flying into melbourne on the 27th and flying home the 31st (at 7am  )

Sure i would love to meet up! im hoping i may get out to see debbie at some stage..but if it works out maybe we could meet for coffee in the city on the day you are in there with your neices mum. i will be going to my aunts house that day but there may be some time in there for a coffee!

Thanks jan too for your comments.....they mean alot....i guess we all have our down times,
i think sometimes when i stop and think, the reality of this disease catches up with me...so best to not think and keep working!  

goodluck with the chat room! i hope theres someone in there to chat with!
Michellexx

Well, what a coincidence. I'm going to Melbourne on the 28th for the weekend as well. It's actually a birthday present from my mum...she's taking me to see Priscilla. We'll be staying with my sister in Berwick (i think that's where she lives), she just moved there from St Kilda. I'm not too good with getting around in the outer suburbs of Melbourne so it might be difficult to catch up with people...although it would be good.

I'm pretty sure we're going to have a shopping day on the Saturday at the Chadstone? Shopping Centre so if anyone is near there and wants to meet up for a coffee that could be good.

Hope you're feeling better Michelle. You spend too much time thinking of other people and not enough time looking after you...i think you need some pampering.

Love Katie

pampering??? whats that??? haha...just kidding...im ok really just had my monthly meltdown im back on track now...I just feel really sad for my mum right now, i feel she is declining alot...HD breaks my heart when i look at what it has done to my family and to many of my friends...its very cruel...its hard to stay together all of the time  

So im attempting to put my world back into some kind of perspective... I have alot to be grateful for too...like you guys...and my family!


gee that is a coincidence Katie! I have no idea where anything in melbourne is! Shopping sounds fun though  ...i may need a week for this trip!

Ill email you Katie and work out if catching eachother is a possability...see how we go!

Hi to you all.  I was in my local library yesterday & had I think a great idea. I asked them if I could put some info about HD in there for the week & they agreed readily.  I contacted the HD association To ask for some info to put in & hopefuly a poster. I have a couple of books but nothing about JHD do any of you know any please? I feel people should know that  HD doesn't just effect adults & the living hell this disease can cause.  All the books I put in the library will not be for loan but hope some of the bits the association send out can be left for people to take & thought maybe leave some phone numbers & maybe the association's website. Maybe this one as well.  What do you think ?

  I thought {briefly] That I could give a short talk but don't think there is enough time to organise that. Phew!

  Anyway if any of you have any ideas or info I would be very grateful.  I've never done anything like this but as I know there are a few people in the area with HD or at risk it might help & we have a caring community & lots of people go through the library and where I will set this up everyone has to pass.

  We shall see how it goes.  

   Looking forward to having a coffee with  whoever can make later in March.

wow jan i think that is an awesome idea!  I think its wonderful you are doing something new and taking this opportunity to share information about HD...awesome!...and your idea of holding it in the library sounds just perfect

jan...fantastic idea

michelle...you are entitled to your monthly meltdown....you do help so many people, more than you know, and you do need to llok after yourself

and as for this potential end of march minimeet...**goes books flight s to melbourne to visit old friends**

just kidding lol

Hi Jan,

Are you planning to go to the Holmseglen meeting on the Thursday night? Anthony and I are hoping to go, it is the day that Anthony comes out of hospital respite. I am hoping to organise respite for Bailey over a couple of days and maybe we could make it then.

It would be so good if you come, Michelle and her brothers come and we all meet up. I don't know where it is but will certainly look it up, it is a fair way from our place. Anthony seems keen to go so if you are going as well it gives me more incentive to book.

Who knows, we may have met before at something. I did go to a meeting in the day a few years ago - Jan McGuire ran the meeting and there was a good turnout for that. I met lovely people there - were you one of them by any chance??

Debbie

Yeah Michelle & Debbie I want to go to this meeting as well & as you say Debbie It will be more reason to go if you guys go . It is about 1 hours drive for us & usually in bed by 10 [but will really love to do this]    What about you Katie , Will you be here then?  You tal;k about Chadstone shopping centre to shop I haven't been there for @ least 20 years but with all the upgrades I believe it is the biggest in the Southern hemisphere. Shop till you drop!  I hate shopping but for you who like it it will be great.


  I went to visit my brother yesterday for his birthday. We took him out for lunch which he did enjoy but as soon as he had eaten he wanted to go , not much conversation & very hard 1 on 1  Just wanted to go home to sleep.  He has lost 5 klo in 2 months & not wanting to have his lunch sometimes.  My brother has always had hollow legs always hard to fill him up. So big changes again.  Today I hear he has had another fall & he couldn't walk!!!  Badly but got around.  He fell behind his door & they couldn't get into his room as his head was stuck behind the door.They had to get in through the window. Called the ambulance & Dr & he wanted him to go to hospital. He couldn't walk & needed a wheelchair. They are keeping him overnight & doing scans tests & an MRI.             He said it happened last night they say this morning we may never know as he gets confused about timing.     I really really hope he wasn't stuck there on the floor all night!!!!!! My heart is breaking I've had my cry's today but told he will get better care if he is there on his own. God who do you believe.   I'm waiting for his daughter to let me know how he is about 9 pm. Then what's going to happen tomorrow Home or what.

We are losing him bit by bit. & I want the old constantly talking Andy back!  We used to wish he would shutup & know we all want him to talk forever.    I can't see yhe keyboard properly  now sorry but thanks for being here to express now how I feel Sometimes their are things you can say to family & sometimes it's too hard because you have to monitor their feelings
when all yopu want to do is scream & scream  This is shit.    Now I'll say sorry you have had to read this but also thanks that I can say it.


  I want so much to get together this month.     THANK YOU ALL  Jan

Oh Jan,

So sorry to hear about your brother. It is heartbreaking and the confusion doesn't help at all. Today Bailey was terribly irritable and I eventually phoned a Dr, then the hospital who said to bring him in. As I was packing his bag he had a seizure so we called an ambulance and they took him in. He had another seizure on arrival and his temperature is 40.3, they have done all the tests imaginable and kept him sedated. He is now in the Kids Ward where I hope they can bring his temperature down and keep him sedated while the drugs and things they give him make him feel better. There was no pacifiying him and he was trying to pull out tubes from his nose and arm.

Just when you think everything is under control and 'bang' another thing pops up. I really hope your brother is ok and I guess being in hospital is the best place for him. He will be monitored there. In the meantime remember we are here listen to your vents and we really do know what you are going through and feeling. Perhaps if we both scream loud enough we might actually hear each other across the bay?

Debbie

Thanks Debbie.  I do feel a bit better today. I haven't heard how he is today as yet waiting for some news & decide when to go & see him & if they know why he isn't walking.

Your troubles make mine fade to almost nothing.   I'm sorry for what has happend to Bailey Pray they get his temp down quickly.   It must be so distressing to watch your little guy go through so much hurt & pain..  Will be thinking of you all today.!

It was so good to let my feelings out last night & maybe if we did scream over the bay we would hear each others hurts & anguish

  In reply to if we may have met I don't think so. I wasn't at the meeting you mentioned But hopefully we will met at Holmsglen.  May have to get there early so we can all have a good chat.May have to wear name tags so we know our group. Must get off now in case the phone goes as

I'm dial up   Thinking of  Jan

   Thanks for your help.

Hey Jan...I hope you are doing ok, never be sorry for writing how your feeling and what is happening for you, its all very hard...more than words can describe really...so i hear exactly what you are going through and it truly is shit. I hope you recieved some more news today about how your brother is and that can ease some of your anguish...we are here for you in whatever way we can be, so if talking helps then that is good...take good care.  

Debbie how is Bailey going today? I really hope he is ok too and they are able to bring his temp down...give him a big hug from me and tell him im sending a big kiss! I hope your able to get some rest through all this. So a hug for you too    

HD awareness day...
I have spoken to my brother and his partner who will arriving with me on the 27th and they are keen to come to the talks....so lets make it a date! I will work on finding out how i get there from the city... Seems like the perfect place and opportunity to get together...and i agree Jan if we aim to get there earlier so we can have a catchup before the talks that would be wonderful.

Take care jan and Debbie...and let us know how you are going.
Love Michelle