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 New member from Australia 
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Joined: Thu Oct 06, 2011 2:04 pm
Posts: 2
Location: Sunshine Coast QLD Australia
Post New member from Australia
:P Hi all My name is Linda and I have just joined up. My wonderful Dad has been diagnosed with LBD in August 2011 and is 86 years young. He is responding well at present to medication and we have a great specialist on board. It took me nearly 12 months to get a referral from the GP who kept telling me the changes were part of the normal aging process. Bah humbug! We have our good days and our bad days but we treasure every day together and have had the opportunity to tell each other the things were have never really discussed before. The situation is complicated by Mum who has chronic emphysema [O2 x24/7] and associated dementia; she also has a personality adjustmnet disorder with panic attacks and agraphobia. I have retired to take on the roll of full time care giver across all aspects of their life. With no siblings for support I am grateful I have a wonderful partner who is so supportive. We have started a project with Mum and Dad to capture the essence of their lives not the Family history we have done that but the reminisences and memories of growing up the depression the war school days etc. A great mind activity for both and also encourages non threatening communication and interaction. They feel they are in control. As there is little to nil research in Australia about LBD it gets lumped in with AD and Parkinsons I am linking out to as many groups as I can and have started a support group with the aim of providing links, education for GP's and a shoulder for others careing for LBP family & friends. At the moment it is just me and Dad's specialist but I have an appointment to see our local State Goverment representative who holds the health portfolio to discuss bringing him on board as well. We need to turn on the light with LBD and let people know Dementia is not black and white - and the difference early diagnosis can make. The support I have received from people all over the world is wonderful and I want to pass some of that along. No one should be alone on this journey or do it in the dark. Cheers all

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Linda Dad 86 LBD


Thu Oct 06, 2011 7:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: New member from Australia
Welcome! It sounds like you are taking control (as much as you can) of the situation and doing whatever you can for your parents. Starting a support group and raising awareness about LBD is a lot of work but I am sure it'll be rewarding for you and so helpful to others. Good luck! Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Oct 06, 2011 7:37 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 245
Post Re: New member from Australia
Hi Linda,
Welcome to the LBD board! I am quite new here myself, as my mother (age 95) was diagnosed just in April and is still fairly early in the disease. The kind folks here have been wonderfully helpful with their stories, experiences, and advice on coping with LBD. It has also been helpful for my 95-year-old father, who was initially inclined to attribute the erratic cognitive function and behavior to a sort of willful perversity instead of disease processes. He has really found it reassuring to hear that this is part of the story.

Your idea of getting your folks to tell their stories is wonderful, and sounds like a help to them and a legacy to the future, also.

I've worked in Alzheimer's and other dementia research for about 25 years, so that background is sometimes helpful in figuring out what's going on. And it's definitely of use in getting care for my mom. Her neurologist is a colleague, and one of the best in the world.

Your efforts to increase awareness and resources both with the community and with your state government are tremendously valuable! Important, and tough work.

I don't know where you are in Australia, or if you are familiar with the AIBL study and its leaders. The head of this study is Chris Rowe, a neurology professor in Melbourne, I believe. I'm involved with the American counterpart, the ADNI study, and know Chris from international meetings. They mostly focus on Alzheimer's, as you say, but have also done research with LBD. Maybe it would be worth getting in touch with the AIBL folks?

Good luck, and welcome, and a big cheer for your efforts not just for your family but for others -
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Thu Oct 06, 2011 7:41 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New member from Australia
Linda,

Thanks for starting an LBD support group in your area! I'm sure you can help many through that effort.

And it's also very nice you are doing a family history project. I'm sure it's very meaningful for your parents as well.

A paper was published a year or more ago by Kathryn Nicholson at the University of Melbourne (Parkville). She read four books by dementia caregivers. She concluded that although the patients in some of the books were said to have AD, they actually had DLB. I most likely posted the abstract or a summary here. Perhaps you can do a search on past posts containing the words "Nicholson Australia."

And there was some good research a year or more ago from the Univ of New South Wales (Sydney) where some group of patients donated their brains upon death, and they found that very few actually had DLB, though they were diagnosed clinically (during life) with DLB. Again, perhaps search on past posts containing the words "New South Wales DLB."

Parkinson's Australia does have a lot of useful lay material on LBD. I've circulated it to the local support group here in Northern California.

Robin


Thu Oct 06, 2011 8:57 pm
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Joined: Thu Oct 06, 2011 2:04 pm
Posts: 2
Location: Sunshine Coast QLD Australia
Post Re: New member from Australia
Thank you every one for the warm welcome and I will follow up on all of the suggested contacts - that information is so helpful. I sometimes feel like Pollyanna, everything happens for a reason and if I can find the positives and go with them it will help me stay in control of my emotions. Can't help it I am a control freak at times :roll: even if i continually forget passwords ! I am treasuring each good day as it comes Have a good day and catch the sunshine. Cheers Linda

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Linda Dad 86 LBD


Sun Oct 09, 2011 7:17 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New member from Australia
Linda,
Let me add my welcome to the LBDA forums, Thank you for the start up of yet another LBD support group, I think you will find much useful information here, again welcome !

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Irene Selak


Mon Oct 10, 2011 9:43 pm
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