Hi Michelle

My name is Dave and I also live in Sydney, Australia. I am 50 years old married with 4 kids (3 boys & 1 Girl). My mum was diagnosed when she was in her early 40?s and she finally passed away at 69 just over 2 years ago. I remember taking my mom to Lottie Steward twice a year for respite care and she used to love the way the staff treated her like royalty. As her primary carers it played a huge part in keeping us sane and able to care for her longer before her symptoms finally got severe enough we had no choice but to put her in a nursing home. I went through the gene testing in late 2001 and received a positive result with a CAG of 43. I inherited not only my gene from my mom but her Neurologist and councillor who both great and very dedicated ladies. One thing a carer of someone with hd ends up doing is having to educate their GP?s on just about everything about hd from research, supplements and treatments.

I am lucky enough to be still be working fulltime (I negotiated to have one day off every 2 wks to spend some quality time with my family.).

Take care

Dave

marshap,
It certainly was a comfort to see a place that if I get this disease maybe I could go there rather than into a nursing home where they are generally not set up for hd.

I guess denial serves a purpose in a way to get us through a period of time without hd taking over our lives but yes I can see your struggles now when it all kinda hits home about the realities of it all.I wonder what your daughter is saying when she talks about her penny? Sounds like she feels she is a very lucky girl and somehow that will help her through this. How old is your daughter? One of the reasons I cant bring myself to be tested is the guilt associated with the fact i could have passed it onto my kids.

wow Dave sounds like you are doing great.Thats fantastic you are still able to work and have some extra time with your family! I was really glad to hear another positive story about Lotty Stuart. They really do a great job with a very difficult disease.Im glad they where able to offer your mum some royalties!!

I think your right about carers having to research to educate docters etc and i think i will keep this more in mind for future and not assume they know the best for mum because I feel they kinda let her down by not knowing.

How old are your kids dave?

Keep up the fantstic work!! I think my mum has about the same repeat as you and she is 51 and in the later stages..so does repeat numbers really mean anything?

Bless you Michelle and Dave. It is great when we hear something positive about an out-patient or long term care facility. Dave, sounds like you are putting in a lot of hours. Michelle, Heather is 32 and maybe you have given me a different perspective on the copper penny deal. And I certainly can relate to the guilt thing. Maybe we go by our heart more than our head when it comes to our children-I don't know.

You sometimes get genealogy information that is just interesting: here is a note about the Lottie Steward Hospital. I take it it is not exclusively HD?


born 17th October 1904 at Hawkesbury Road, Westmead NSW and died 7th March 1996 at Lottie Steward Hospital, Dundas NSW

Hi Michelle

I think I have been very lucky to test positive and at 50 have no noticeable symptoms. I work as a Project Planner and I am sure this type of work keeps my brain in good condition with lots of multi tasking as well as demanding managers. I love my job but not necessarily the 50 kms drive to and from work each day.

My sons are 27, 25, 23 and my daughter is 21 (now I feel old J) none of them have chosen to test yet. I know how guilty I feel sometimes putting them at risk but they were all born prior to my mum being diagnosed so I can take some comfort in that. In our case I truly believe that the kids benefited greatly from growing up with their nana as a big part of their lives and doing our best to explain what was happening with the disease. We all still miss her even after 2 yrs.
I have 2 brothers who both tested negative and I didn?t see the sense in burdening my mum with my results so she took great pride in telling all the staff in the nh she never pasted ?IT? on to any of her sons.

Last week I had my third visit in the PREDICT-HD research program at Westmead and remain hopeful there will be a cure or at least improved treatments in the future. The HDAC and lighthouse are great sights with even greater people on them. I visit them both at lunchtime to see what?s new and read people posts. I would be happy to join you all in a chat if you let me know a time and what the room name is?

I am sorry your mum is in the advanced stages?..

Dave

PREDICT-HD? And what time is it in Australia? It is 11:30 here and we have been tearing the board up tonight. Must be a full moon.

hey dave,
so should we just set a date and time and invite others in to the chat? there was a few others interested. Maybe a night time around 7.30 or something..let me know what suits and others can let me know and then we will do it!!

Thats great your mum got to die thinking that she didnt pass it on. My mum is devastated that she passed it on and I wish my brothers didnt tell her because she didnt really need to know. But i guess they felt they where doing the right thing at the time.

I am hopefull there will be a cure before i am 40...that gives them 13 years to find something!! So sooner would be better for everyone on here and its sad to think its too late for my mum. they always used to tell her five years and there would be something and that was over 10 years ago..so it gets disheartening at times. She will ask me every now again if there is a cure yet and it breaks my heart to have to say no.

Dave can you tell me a bit more about the Predict Hd thing you go to..it sounds interesting and I have never heard of it.

thanks, michelle

marshap,

i think often when it comes to our kids our heart takes over.

I know when we had genetic counseling before having our kids the only option was to have the baby aborted if it had hd and i just couldnt do it and i so deperatly wanted to have kids so i had to make that decision and i will live with the guilt or whatever associated with it if i have passed it on. It wasnt an easy decision but i think my heart had to make the right one for me. I am very hopeful that there wil be something, a cure, by the time they are older but i just hope in comes quick enough so they dont have to watch me and there uncles turn sick like nanna. I dont want them living what i live everyday...thay already live it to an extend by seeing there nan but thats alot different to when it is your parent.

Take care
michelle

Hi Michelle

7.30 pm sounds good to me just let me know what day (so I can get my wife to pull rank on my daughter so I can use the pc?hehe).

We were told the same as your mum about there being help of some kind in 5 yrs, but there is allot more known now and with luck they will find at least a better treatment before too long. I accept it is probably too late for me but my kids and younger people like yourself we can only pray face a better future.

PREDICT-HD is a collaborative research effort by approximately 20 HSG centers to study persons at risk for HD who are aware of their gene status. People who have tested gene positive and gene negative will be included in the study. It is an observational study. This means that research participants in this study, will be examined periodically, but will receive no experimental drugs or treatments. It is a study that is expected to give essential information to help design future studies of experimental drugs aimed at slowing or postponing the onset of HD in healthy persons at risk for developing HD.

Here is a link to an earlier article from Will Brown that appeared in the HDAC. He is a far better writer then I am.

[www.hdac.org]

Dave

Ok dave so 7.30 is a good time what about a day...How about Monday night? i was going to say sunday but i think the footies on and im not sure if your a footy fan!!

my hubby might be in this chat if its ok, after alll he is the one with the HD and he might find it more beneficial than me

monday night would be good for him cos he is a footy fan

That would be great twiggy, maybe you could both join in see how you go.

Anyone else keen?

I am usually on chatting to my girlfriend on Monday at 7.30 - now I am sure with my "expertise" on computers I will try to get in and meet you all too. It would be good to share information.

Debbie (I guess you already know that as my name appears above )

I will try to join in also but that time is bed time for the kiddies so i will try and say hello after i get them to sleep

Oh and my name is Erica

ok guys so its a date 7.30 Monday in the chat room. cant wait to meet you all!!

Hope you guys all have a great chat! Awesome how it all got put together.

sorry we missed it, we had some relatives up from adelaide and we went out for lunch with them then went back to their caravan and had some dinner also

hope you guys had some fun and a great chat

No worries twiggy, if you ever do want to chat just let me know ok. Take care Michelle

Hi Michelle

I was away visiting my mother-in-law on the central coast with the family and missed your post. I am really sorry I was looking forward to chatting with you all. Did you have your chat?
If you want to arrange another just let me know.

Dave