An Explanation by Linda Morse about how the the beginnings of the Lewy Body Support Group of the Sunshine Coast started out in Beerwah, Queensland:
The Lewy Body Support Group SC is a group I started. It grew from my need for support and information following my father’s diagnosis last August. I commenced the FB page in January 2012 on my parent’s 65th wedding anniversary. There was no other active support group for Lewy Body Disease in Australia.
It is a very different disease from both Alzheimer’s and Parkinson’s disease although it shares some similarities. Both of these organizations have one small hand out available on the disease.
Most medical practitioners and health care providers have little or no understanding of the disease so there was minimal or nil support from that sector. The disease is not rare it is poorly diagnosed due to lack of knowledge and the complexity of its symptoms. It is also not simply a disease of the elderly it has an early onset condition as well.
There are active LBD support groups o/seas in the UK and in the USA. We are working steadily towards building positive networking with all like minded groups to provide support, direction and current information on LBD. We do not provide medical advice. We have a geriatrician who supports the group and refers people to the group for assistance. We also have a FB page and the Web Page.
Our group is growing steadily and we have members both from Australia and overseas. It is our hope we will be able to form some face to face support groups as the group continues to grow.
We provide information packs as well as supports and will also provide an experienced public speaker to speak to group’s health care providers care facilities on LBD from a hands on experience point of view. As we currently have no funding the extent of this service is limited at present we are researching what is required to move to the next level to register as either a trust or NFP or both so we can access grant funding and provide a more meaningful range of services.
As we have attracted over 80 members in 10 months and have hits of 1900+ on both the FB and web page monthly there is a need for our service and the information we provide. We also have a patron to help us promote LBD and this announcement will be made on the 15th September.
The Dementia Awareness Day event has grown from the FB page and a desire to involve and educate the community . Dementia in all its forms will reach epidemic proportions around the world in the next 15 or so years. Governments are acknowledging this but I believe do not realise the true impact of Dementia on society.
Dementia in an umbrella term and a symptom not the disease. There are now over 100 different types of Dementia of which Alzheimer’s and LBD are but two.
The impact on a family, physically, emotionally and financially is enormous. The care giving load is huge there are not enough facilities to assist and many of them are not dementia friendly. Relationships break down, caregiver’s physical health is affected and the list goes on.
Unlike Immune Deficiency Disease or Cancer there is currently no hope of a cure or any form of effective treatment.
With the help and support of the Landsborough School of Arts Memorial Hall Committee and the Saturday Market the Awareness Day has grown; we then found out a similar event was happening in the UK on the same day and have linked loosely with that It has grown from the original idea and it is hoped it will be quite an event. We also hope it will be an annual event.
Again we have no funding and this is being run on good will and donations. This year any funds raised will be directed to Alzheimer’s Australia.
We have now aligned the group with Neuroscience Research Australia and in future years funding will be allocated to this organization one of the bodies in Australia conducting research on LBD
On a personal note I retired in 2012 to provide care for both my parents who are in their 80’s I also attend USC assist Bernie with the shop and we also convene the Saturday market in Landsborough so my life is pretty full on and will get busier as I will continue to lobby for better understanding and research dollars for LBD and other dementias.
Article contributed by Linda Morse of BeerwahNo tags for this post.