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AHDA Qld Inc

Newsletter April 2006

In this Issue

President's Report

Dear Friends,

Each year seems to be busier which is a good indication that our Association is making a difference in the health care areas in Queensland. Our Welfare team is again at full strength with Gwen as Welfare Coordinator and Julie and Helen sharing the Welfare Officer role. I know you will join with me in welcoming Helen Fox as our new part-time Welfare Officer.

Queeensalnd Health Funding - Recently we received a one-off payment of $6,000 from Queensland Health. This is in addition to our annual funding of $120,844. These additional funds can be used for one-off purchases and must be expended, if possible, by 30th June, 2006. The Management Committee has approved expenditure of this grant to meet costs for:

  • Strategic Plan
  • Upgrade of computer, and
  • Policies and Procedures Manual

I would like to acknowledge and thank Queensland Health for this generous funding.

HD Awareness Day - 31st March, 2006

I would like to sincerely thank those who participated in our HD Awareness Day activities by holding a function in your district. From feedback received at the office, it appears all were successful from both an awareness and fundraising perspective. Acknowledgement of people who assisted in this way is under the Fundraising section of this Newsletter.

As indicated in the previous Newsletter, Library Displays, a Woody Guthrie Musical Tribute at the Day Respite Centre, Patchwork Quilt Raffle ($1230 raised), and media coverage all contributed to a busy and successful Awareness Program.

Strategic Plan - It has been a busy time for staff working toward Planning Workshops that are to be held on the 22nd and 28th April. Families, staff, Management Committee members, volunteers, health professionals and nursing homes have all been involved in the preliminary interview process.

Representatives from all of the above groups (both metropolitan and regional areas) will meet at the Planning Workshops to develop a Strategic Plan for the next 3 years and to prepare a one-year Operational Plan in conjuction with the Strategic Plan. In our July issue of the Newsletter, we will be in a position to report fully on the outcome.

Once again I must stress that fundraising remains a high priority and we remain on the lookout for any worthwhile ideas to generate the much needed funds.

I look forward to giving you all an update in our next Newsletter. Ray Bellert, President.

Welfare Update

Over a month has passed since I began working at AHDA (Q) as a Welfare Officer. It has been a busy and interesting month, meeting many new people and visiting new places. I would like to thank all of those people I have met for welcoming me so warmly - clients, families and staff. I have been very impressed by many things I have seen so far in the "HD Community", especially people's positive attitudes and the courage and dignity shown when dealing with challenges in their lives.

When I started I was very happy to hear I would be covering the south side of Brisbane, as this is where I was born and raised. My training is as an Occupational Therapist and I have worked in Adult Mental Health for the last 10 years. Some clients may know me from the Friday Day Respite Group where I have been a volunteer for the last year.

I am very much looking forward to working here, and hopefully being of some assistance to individuals and families affected by HD.

Helen Fox, Welfare Officer

Couples' Respite Holiday - 3rd - 5th May, 2006

We have been fortunate to receive funding from 2 sources to meet the total costs of this Respite Holiday. In recent times, two different families very generously forwarded donations to assist the Association in its support services for families in Queensland. Both are more than happy that the donations be earmarked to fund the Respite Holiday. The cost of the respite holiday will be in the vicinity of $2000.00.

This is a very generous gesture and we sincerely thank them for their thoughtfulness and support.

Congratulations to Dr. Elizabeth McCusker who has recently been recognised for her work as a Neurologist and Service Director, Sydney West Huntington's Disease Service at Westmead Hospital.

Dr. McCusker has been awarded "Woman of the West 2006" (meaning Sydney West).

It is indeed pleasing to see Dr. McCusker's efforts acknowledged and those of us who have been involved with HD work over many years can attest to her tireless support to New South Wales families confronting HD and to her involvement as Secretary-General of the World Federation of Neurology Research Group on HD.

Townsville Support Group

Hi to everyone from the Townsville Support Group. Just a few words to let readers know what has been happening here in Townsville.

Each month we have a get-together and we are pleased to say this is attracting a few extra people but there is always room for more. If you live in the area and are able to come along, we look forward to meeting you.

As you are all aware we have just had Huntington's Disease Awareness Day on the 31st March. Last year was our first HD Awareness Morning Tea so this year we had a better idea how it would all work. We were fortunate to have a great Sub-Committee and they brought it all together. All food for the day was donated along with a number of prizes to add to the interest of the morning. We had a tremendous band that was there last year and happy to come back again this year - everyone loved them and wanted to know when we were going to do it again.

The home cooked morning tea was such a success that we are still getting feedback. Well done to all the cooks out there who helped. Some cheese cakes were also donated by the Cheese Cake Shop as a result of a letter sent to the local radio station 4TO. They gave us a mention in the breakfast show and I rang them to thank them in the morning show.

The HD Awareness Day Morning Tea was a success both socially and financially thanks to all who donated food, prizes and time to make it such an enjoyable event. We are looking forward to the next one.

Sue Bourne, Chairperson

Queensland's Adult Guardian

The role of the Adult Guardian is to protect the rights and interests of adults with impaired capacity. She is an independent statutory officer who operates under the Guardianship and Administration Act 2000. Some important functions performed by the Adult Guardian include:

o Acting as guardian of last resort (i.e. substitute decision maker) when appointed by the Guardianship and Administration Tribunal;

o Making decisions on health matters on behalf of an adult with impaired capacity (this may occur as Statutory Health Attorney - and as last resort);

o Making representations (on behalf of the adult) to service providers, government and non-government agencies;

o Informally mediating or helping resolve disputes between people formally appointed to make decisions for the adult (eg. Health care disputes); and

o Educating and giving general advice about the operations of the Powers of Attorney Act 1998 and the Guardianship and Administration Act 2000 (especially the functions of the Adult Guardian).

The Adult Guardian's decisions must follow the General Principles set out in the Acts and also the Health Care Principle if it is a health matter. One of these Principles is that decisions are made consistent with the adult's care and protection, even if this overrides the adult's wishes (though this would be rare).

The views and wishes of the adult (expressed now or when the adult was able to make decisions) and the opinions of family members, friends and others who support the adult are considered when decisions have to be made.

The Adult Guardian does not:

o Have the legal power to investigate systemic abuse in facilities containing adults with impaired decision-making capacity;

o Duplicate police powers of investigation;

o Duplicate internal investigative procedures for handling issues that do not comply with the policies regarding abuse in government or non-government run/funded facilities for adults with impaired capacity;

o Give legal advice or advice about making wills or general Powers of Attorney;

o Make decisions about the adult's financial or property matters (these are made by a private administrator or the Public Trustee);

o Take on duties normally carried out by family members such as visiting, arranging meals or making appointments.

Acknowledgement: Queensland Alliance Newsletter, April 2006.

Organisers of the Huntington's Disease Satellite Meeting have requested that we advertise this Meeting (details below) in our Newsletter, inviting clinicians and researchers in Queensland to attend.

Huntington's Disease Satellite Meeting - 4-5 August, 2006

Radisson Resort, Palm Meadows Drive, Gold Coast
Key Speakers: Dr David Rubinsztein, UK, and Professor Michael Conneally, USA

On behalf of the organizing committee of the Huntington's Disease Research Group Victoria (HRGV), we invite you to attend the Huntington's Disease Satellite Meeting to be held in Queensland on the 4th - 5th August, 2006.

The conference will be held at the Radisson Resort, Palm Meadows Drive, Gold Coast. Set in the midst of Australia's favourite holiday playground, the Radisson Resort Gold Coast is convenient to an array of activities and attractions such as shopping, golf, tennis and sandy white beaches. At the same time, the resort's location in secluded Palm Meadows provides an oasis-like atmosphere of soothing relaxation. Located just 40 minutes from Coolangatta Airport and 60 minutes from Brisbane Airport.

An exciting program has been put together with a strong focus on the role of genetics and potential translational research, as well as an update on other aspects of clinical research (neuropsychology and neuroimaging), couselling and management. Our two keynote speakers : Dr David Rubinsztein, UK and Professor Michael Conneally, USA, along with our Australian colleagues, will be delivering a number of exciting updates relating to Huntington's disease.

The conference will commence on Friday 4th August at 12.30pm with registration, followed by a half day scientific program. Thereafter, there will be an opportunity to relax poolside and enjoy a BBQ dinner with entertainment sponsored by Amarin. A full day scientific program will be run on Saturday 5th August allowing delegates a free Sunday for travelling time to the 11th International Congress of Human Genetics, which will be held in Brisbane (40 minutes drive) from the Radisson.

For further information or to download a conference brochure / registration form, please log on to www.huntingtons2006.com

We look forward to presenting you with an exciting program and would welcome your support of this meeting.

Chairs of the Organising Committee
Phyllis Chua M.B.B.S.,M.Med,.F.R.A.N.Z.C.P
Nellie Georgiou-Karistianis, Ph.D

Research Update -

More pieces of the puzzle

Media Release - 20 December 2005
Brain research wins $1 million

One of Australia's leading neuroscience researchers has been awarded $1 million dollars to fund his ongoing cutting-edge Australian research into brain disorders.

Dr Anthony Hannan from the Howard Florey Institute in Melbourne has won a Pfizer Australia Fellowship, believed to be Australia's largest single private medical research grant, after a gruelling independent selection process.

There were six finalists from across the country vying for the two coveted Fellowships.

Dr Hannan said his recent work demonstrated that environmental factors such as mental and physical exercise can delay the onset of some degenerative brain diseases such as Huntington's Disease (HD).

"To be chosen for this Fellowship is a great honour as I was competing with Australia's top medical researchers," Dr Hannan said.

"Attracting medical research funding can be tough, so the Pfizer Fellowship will allow me to concentrate on my research and secure my group's research over the next five years," he said.

Huntington's disease is characterised by degeneration of the significant areas of the brain such as the cortex and striatum, producing motor, cognitive and psychiatric symptoms.

HD was thought to be the epitome of genetic determinism. Environmental enrichment of mice was found to dramatically delay onset and progression of brain disease.
Dr Hannan will use his Pfizer Australia Research Fellowship to further explore key areas of neuroscience, and work towards the eventual development of new therapeutic approaches for devastating brain diseases such as Huntington's, schizophrenia and Alzheimer's.

Dr Stephen Nutt from the Walter and Eliza Hall Institute has also been awarded a Pfizer Fellowship for 2006.

This is the fourth year of the Pfizer Fellowships, bringing the total number to nine, with each receiving $1 million over a five-year period.

The Howard Florey Institute is Australia's leading brain research centre. Its scientists undertake clinical and applied research that can be developed into treatments to combat brain disorders, and new medical practices. Their discoveries will improve the lives of those directly, and indirectly, affected by brain and mind disorders in Australia, and around the world. The Florey's research areas cover a variety of brain and mind disorders including Parkinson's disease, stroke, motor neuron disease, addiction, epilepsy, multiple sclerosis, muscular dystrophy, autism and dementia.
Pfizer Australia is the nation's leading research-based health care company. It discovers, develops, manufactures and markets innovative medical treatments for both humans and animals. Pfizer Australia is investing $A40m in local research and development. For more information visit www.pfizer.com.au

For more information contact:
Merrin Rafferty
Public Relations and Development Manager
Howard Florey Institute
Ph: (03) 8344 1658 M: 0400 829 601
Email: m.rafferty@hfi.unimelb.edu.au Web: www.hfi.unimelb.edu.au

Adrian Dolahenty, Pfizer Australia Media Affairs on (0438) 656 175

Acknowledgement: "Contact" AHDA (Vic.) Inc. Newsetter, February/March 2006.

FETAL CELL TRANSPLANTS SLOW HUNTINGTON'S DISEASE:

Bron: BioNews, 27 febr. 2006.

The latest results from a trial in which five Huntington's disease (HD) patients received fetal nerve tissue transplants show that the treatment can slow, but not stop the progression of the condition. The study, carried out at the Henri Mondor Hospital in France, shows that for some patients, cell transplants could provide a few years of improvement. But the effect is temporary, say the team, who published their results in the journal Lancet Neurology.

HD is a genetic condition that causes progressive damage in certain areas of the brain, leading to gradual physical, emotional and mental changes. Symptoms of HD usually appear between the ages of 30 and 50 years, and people with the disease have a 50 per cent chance of passing it on to each of their children. Although currently incurable, scientists think HD could potentially be treated with injections of healthy cells, since it is limited to specific brain areas.

In 2000, the French team reported that three of five HD patients who had received grafts of fetal nerve cells showed an improvement two years after the treatment. However, the latest follow-up study of these individuals shows that these improvements 'plateaued' after two years, and the patients began to decline again over the next 2-4 years. The researchers say the study shows the treatment is 'not a permanent cure' for HD, but offers a period of remission.

One patient was still working part-time six years after the treatment, and all three regained skills they had lost before the surgery - including cycling and being able to carry out household chores. However, other skills, such as guitar playing, were lost again by five years after the treatment. A spokeswoman for the UK Huntington's Disease Association said: 'we welcome any advance if people can be helped', but cautioned 'this is major brain surgery and there are risks'.

Six to eight fetuses are required to provide enough brain cells for each operation, which are obtained from consenting women undergoing abortions. A similar approach using laboratory-grown stem cells could one day be used to treat HD, as well as other degenerative brain disorders like Parkinson's disease.

- MedPage Today 27/2/2006 'Fetal Tissue Grafts Slow Progression of Huntington's Disease'
- MedPage Today: https://pharma-doctor.com/loxapine.html
- The Independent 27/2/2006 "Brain cell transplant slows advance of fatal disease"
- The Times 27/2/2006 'Transplant hope for Huntington's sufferers'

Letter to the Editor

Because mine is one of the Victorian families affected by Huntington's disease we subscribe to the AHDA newsletter which we have always found informative and encouraging.

Most of the items appearing in "Kaleidoscope" have been written by people who have been diagnosed with HD. In every case these people have been enormously positive and in every instance have shown great courage by putting their thoughts on paper.

We have a 47 year old son who resides in a nursing home and recently, one of our grand daughters tested positive for the HD gene. This remarkable young woman has shown great strength and courage in dealing with the diagnosis and has given others in our family something to be very proud of. Our respect and admiration for our grand daughter has no boundaries so I thought it might be opportune for a parent and grandparent to offer something to the newsletter.

Most members would not be aware that, on December 6th the Federal member for Isaacs, the Hon. Ms. Ann Corcoran, delivered a speech to Parliament which included reference to Huntington's disease. I would like to quote some extracts from that speech which might offer encouragement to other readers.

"I recently met with a constituent who has campaigned for many years to promote a greater understanding of a heavily stigmatised and often mismanaged disease, Huntington's disease.

The constituent lost his first wife, his mother-in-law and four sisters-in-law to Huntington's disease. His eldest son also suffers from the disease. Sadly, specialised care for Huntington's disease sufferers is almost non-existent and they are often placed in aged-care facilities. Given that management of the disease involves intensive mental and physical stimulation, aged-care facilities are entirely inappropriate for Huntington's sufferers.

The constituent explained how frustrated he has been over the years to raise awareness of this problem in political circles and in the wider community. Recent scientific developments have given some hope to sufferers and it is essential that, as a community, we give greater understanding and more effective support to the thousands of Huntington's carriers in our midst and to the many thousands who are destined to battle the disease....

I understand the constituent received a follow-up letter advising that the issue is already on the agenda of the Council of Australian Governments (COAG) and that is a strong indication the problem will be addressed sooner than later."

That news, along with the research being carried out by Dr. Anthony Hannan offers a glimmer of hope to all families who live in the shadow of Huntington's disease and hopefully generate a greater understanding within the general community.

Sincerely
Jim and Lorraine Rutherford

Acknowledgement: "Contact", AHDA (Vic.) Inc. Newletter, February/March 2006.

From the Executive Officer AHDA (NSW) INC.


Friday 10 February was a notable day in the campaign to remove young people with Huntington's Disease from aged care nursing homes. The Prime Minister and State Premiers collectively agreed to implement a new joint Commonwealth, State and Territory program to start to reduce the number of younger people with disabilities living in nursing homes. The program will commence in July 2006.
The full text of the Council of Australian Government (COAG) communiqué on this issue is shown elsewhere in this newsletter, together with a press release by the Young People in Nursing Homes National Alliance (YPINH).

Welcome as this decision is, now is not the time to relax our efforts. The commitment is a limited one - it promises only "a start" to reducing the numbers of young people in nursing homes; alternative long-term care options are to be provided only "where ... (they) can be made available".

The Alliance believes that "less than 1,000 of the 6,500 young people under the age of 65 living in nursing homes would benefit."

This issue is one in which the Association has been active, together with many other organisations under the banner of the Alliance. It will remain a focus for advocacy during 2006. You can assist as an individual by keeping up the pressure on your State and Federal parliamentarians.

If you have internet access, I recommend a visit to the YPINH website
(www.ypinh.org.au). It's a well-designed website that tells the human
stories behind the issue. It will give you the facts and ideas for a letter
or visit to your parliamentary representatives.

We were honoured to have the member for Ryde (the "local" member for our West Ryde office) and Deputy Premier, Mr John Watkins, present at our Annual General Meeting last year. We look forward to working with him this year to ensure that the implementation of the new program in NSW takes into account the needs of our Huntington's young people.

Acknowledgement: "Gateway", AHDA (NSW) Inc. Newsletter, Summer/Autumn 2006.

COAG Promises Better Care

As featured in our editorial on Page 1, The Council of Australian Governments (COAG) met on 10 February 2006 to discuss how to provide better care for young people in nursing homes. Below is a COAG communiqué, released shortly after the meeting ended, and the response from The Young People In Nursing Homes National Alliance.

COAG Says: "Improving People's Care in Hospitals and Residential Settings

From July 2006, governments will implement a new joint Commonwealth, State and Territory program to start to reduce the number of younger people with disabilities living in nursing homes. The program will include:

" offering younger people with disabilities in residential aged care homes a care needs assessment;
" negotiating and providing appropriate alternative long-term care options, where it can be made available and this is what clients choose;
" developing and establishing new services and care options, including improved services within nursing homes; and
" reducing future admissions of younger people with disabilities to residential aged care.

The initial priority of the program will be for people under 50 years of age."

YPINHA Says: "Great Start But Less than One in Six will Benefit

The Young People in Nursing Homes National Alliance
today welcomed the decision by COAG to spend $244 million over five years getting young people out of aged care facilities.

YPINH director Dr Bronwyn Morkham said the commitment by the states and territories and the Federal Government was historic given the decades of inaction on the issue.

But she said the alliance believed less than 1,000 of the 6,500 young people under the age of 65 living in nursing homes would benefit.

"The challenge for governments is to put a permanent end to the terrible situation where young disabled people are forced to live in nursing homes among the elderly and dying," Dr Morkham said.


"This is a great start given the blame-shifting game that has been going on for too long between the Commonwealth and the States. But nobody can pretend this problem is now fixed."

"On average one person a day goes into a nursing home somewhere in Australia and the harsh reality is that young people as young as 10 will continue to go into nursing homes. It makes no sense to have young people in nursing homes. They don't get the care or rehabilitation they need to get their lives back and it is actually cheaper in the long-term to care for them in the community."

"The alliance will not stop its efforts to get the states and territories and the Commonwealth Government to work together on a permanent solution to this terrible problem."

Acknowledgement: "Gateway", AHDA (NSW) Inc. Newsletter, Summer/Autumn 2006.

Living with a Death Sentence

Ellen Buckley grew up knowing she would contract - and likely die from - Huntington's Disease.

Tegan Taylor reports.

Saturday mornings are quiet at Colleen Woodcock's Carole Park home. A wind chime tinkles somewhere in the distance as Ms Woodcock and her daughter Ellen Buckley sit at the dining table smoking and enjoying one another's company.

But there is an intensity in the way Ms Woodcock gazes affectionately at her daughter and grasps her hand. She knows these easy Saturdays are numbered.

Ms Buckley, 37, has Huntington's Disease, an inherited condition that affects the body, mind and emotions.

While she is able to sit up at the table and be social now, she is already showing the effects of the painfully degenerative illness.

People with the Huntington's Disease gene normally develop the condition between the ages of 30 and 50. It becomes progressively worse over 15 to 25 years, resulting in death.

Symptoms include involuntary, jerky movements, difficulty swallowing, aggression, short-term memory loss and eventually dementia.

Her daughter's early symptoms were depression and mood swings, Ms Woodcock said.

Now, 18 months since she was diagnosed, her muscles jerk constantly, she cannot eat normal food and she has the beginnings of memory loss. Ms Buckley, speaking in difficult, slurred sentences, said the unceasing muscle jerking was one of the most frustrating aspects of the illness; she aches all over.

Sleep offers little respite as she can only manage about five hours a night with the help of medication.

A twinge of bitterness infuses Ms Woodcock's tone as she describes the disease and the way it is affecting her daughter.

If a child inherits the gene for Huntington's Disease, they are certain to develop the condition. Ms Woodcock said her former husband, Ms Buckley's father, never told her the disease ran in his family. She said she considered having a child who was at risk of developing the illness akin to giving someone the Aids virus.

"It's like giving someone the death sentence," Ms Woodcock said.

"The only way to stop it is to make a conscious, responsible decision not to have children."

Ms Woodcock was alerted to the Huntington's Disease line in her husband's family when a doctor turned up on her doorstep when she was seven months pregnant with Ms Buckley's younger brother. The doctor was following the disease through the family tree. Ms Buckley was three at the time.

Ms Buckley said knowing all her life that she was at risk of developing the illness made it easier to handle when the symptoms surfaced. At 21, she terminated a pregnancy, a decision she is now doubly grateful for having made.

All the arrangements for Ms Buckley's funeral, will and final wishes have already been made. She doesn't want a feeding tube, her ashes will be sent out to sea in a canoe, her organs will be donated and her brain given to scientific research.

Heavy decision to have to make while she is alive and well, but they allow the mother and daughter to now focus on the task at hand: making the most of every day and spreading awareness of the disease.

Ms Woodcock said she explained Huntington's Disease to anyone who would listen, including people in shopping centres.

None of Ms Buckley's doctors had ever seen a patient with the disease before she started showing symptoms.

It affects only seven people in 100,000, so when she is in hospital they use her to teach trainee doctors.

"This is her purpose in life, to educate the various medical professionals about Huntington's (disease)," Ms Woodcock said. "God only gives special people these things."

Sufferers urged to seek counselling

Huntington's Disease is a degenerative illness that affects the body, brain and emotions. The illness is inherited and does not "skip generations". Every person who inherits the gene is guaranteed to develop the illness in their lifetime, unless they die of another cause first.

People with the disease may experience mood swings, aggression, depression, memory loss, difficulties problem solving and dementia.

Physical symptoms include involuntary muscle movements, slurred speech and difficulty swallowing.

Genetic counsellors can help people identify whether they are at risk of developing Huntington's Disease. Queensland Clinical Genetic Service genetic counsellor Julie White said people chose to have counselling to help them make life decisions, such as whether or not to have children or travel.

Australian Huntington's Disease Association Queensland Welfare Coordinator Gwen Pratten said a process called pre-implantation genetic diagnosis (PGD) was available to people who had the Huntington's Disease gene but wanted to have children without giving them the disease.

The PGD process works like IVF, where embryos are scanned and only those free of the disease gene are implanted.

If you believe Huntington's Disease may run in your family or you would like to donate money, contact the Australian Huntington's Disease Association on 3391 8833.

Acknowledgment: "Queensland Times" Ipswich - 1st April, 2006.

Twenty Top Tips For Carers


From the Summer '96 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.
By Marge Demepsey and Sylvia Baago, Alzheimer Society of Niagara Region.
Reprinted from the Horizon, Huntington Society of Canada Newsletter.
1. Get help early -- counseling, assistance with caregiving duties, etc.
2. Involve your family from the beginning by sharing your concerns with them.
3. Access all the information you can about the disease and educate yourself as much as possible about its progression.
4. Have an awareness about the losses to come, such as incontinence, inability to dress, etc., so they are not totally unexpected.
5. Recognize the hidden grief component of your anger, anxiety, guilt and depression. Expect adaptation, but not resolution, of your grief.
6. Appreciate your grief and seek out someone who understands it.
7. Recognize the signs of denial: for example, you insist, "I don't need any help." "Nothing's wrong. Everything's okay."
8. Acknowledge your right to feel emotionally off-balance.
9. Learn to "Let Go" from the start and share your caregiving burden. Your loved one can survive a few hours without you.
10. Forgive yourself for not being perfect.
11. Stop trying to be perfect: caring for someone with a chronic illness means your world has been turned upside down and you will probably have to compromise some of your personal standards of housekeeping, etc.
12. Join a support group early.
13. Take care of yourself -- physically and emotionally. Have regular checkups. Get as much rest and respite as possible. Eat well-balanced meals. Give yourself time to cry. Don't be afraid to acknowledge your feelings of anger, anxiety, helplessness, guilt and despair.
14. Hang on to your sense of Self. Keep up your regular activities as much as possible.
15. Take one day at a time, but don't neglect to plan for the future. Good planning can include getting a power of attorney, accessing community care early and filling out placement papers.
16. Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.
17. Learn how to communicate differently with your loved one if cognitive and language abilities decline. Good communication strategies help to avoid frustration.
18. Make sure your family doctor is one who is willing to listen and understand.
19. Accept yourself for being human; even if you "lose it" sometimes, give yourself a pat on the back for doing the best you can.
20. Follow the action plan to avoid caregiver burnout.

The URL of this page is http://www.lib.uchicago.edu/~rd13/hd/steps.html
Send comments to Renette Davis at: rd13@midway.uchicago.edu
Acknowledgement: "Gateway", AHDA (NSW) Inc. Newsletter, Summer/Autumn 2006.

Good Ole' fashioned love&

It was a busy morning, approximately 8.30 am, when an elderly gentleman in his 80s arrived to have stitches removed from his thumb. He stated that he was in a hurry as he had an appointment at 9.00 am.

I took his vital signs and had him take a seat, knowing it would be over an hour before someone would be able to see him. I saw him looking at his watch and decided, since I was not busy with another patient, I would evaluate his wound.

On examination it was well healed, so I talked to one of the doctors, got the needed supplies to remove his sutures and redress his wound. While taking care of his wound, we began to engage in conversation. I asked him if he had a doctor's appointment this morning, as he was in such a hurry. The gentleman told me no, that he needed to go to the nursing home to eat breakfast with his wife. I then inquired as to her health. He told me that she had been there for a while and that she was a victim of Alzheimer Disease. As we talked, and I finished dressing his wound, I asked whether she would be worried if he was a bit late. He replied that she no longer knew who he was, that she had not recognized him in five years now.

I was surprised, and asked him. "And you still go every morning, even though she doesn't know who you are?" He smiled as he patted my hand and said, "she doesn't know me, but I still know who she is."

That is the kind of love I want in my life. True love is neither physical, nor romantic. True love is an acceptance of all that is, has been, will be, and will not be.

Acknowledgement: The above article was sent in by one of our readers.

Fundraising

Raffle of Double Patchwork Quilt -
We are delighted with the response to this raffle. Many of our readers in regional areas supported the raffle by selling tickets in their local area. $1230.00 was raised and we are pleased to advise that Sandy Tansey, Ticket No. 0074 was the lucky winner. Sandy is thrilled to be the proud owner of this beautiful quilt. Thank you once again to Val Moran and the Little Mountain Quilters for donating the quilt. We do realise a tremendous amount of time and effort goes into the end product - thank you so much.

HD Awareness Day Fundraising
We would like to acknowledge the support given by the following people and community groups who so willingly participated in the HD Awareness Day activities. In addition to the money raised through the Patchwork Quilt Raffle ($1,230.00) an additional $3,000.00 was raised. Thank you to -

Ray Bellert, Anita Smith, Dawn Lawrence and the Acacia Ridge Community Centre

Carol Booker and the Caboolture Shire Council

Norm & Irene Golby and the Adventist Retirement Village Social Committee in Victoria Point.

Patrick and Hedy Keogh of Ipswich

Dagmar Ker and RSL Care in Caboolture

Pat O'Gorman and the Redcliffe Police Station

Sandra McDonald of the Sunshine Coast

June Shearer and Ethyl Fogerty & the Wynnum Manly Leagues Club

Townsville Family Support Group

Future Activities
Garage Sale - 8th July, 2006
Please refer to the enclosed flyer.
Sausage Sizzle - Bunnings -
Sunday 14th May at Mt. Gravatt. If you are able to volunteer a few hours on this date, please contact Barb at the office.

There will be another Sausage Sizzle at Bunnings, Capalaba later in the year.
Rotary Raffle - Prize 6' x 4' Car Trailer including Home and Gardening Equipment valued at $4000.00.
Our friends from the Acacia Ridge Rotary Club have offered their support once again by nominating the Association to participate in their upcoming raffle. The Raffle is drawn on the 27th June. We are looking into the possibility of joining the Rotary Club at a couple of venues to sell tickets. If you can help out this way, or alternatively agree to sell a book on our behalf, please contact the HD Office.

Bridge to Brisbane Run/Walk - Coming up in early August. Planning will be under way soon, however in the meantime keep the event in mind. It was a lot of fun last year and certainly raised considerable funds.


Pauls Bottle Caps -
At a recent Management Committee meeting, members decided to participate in the "Pauls Collect-A-Cap Fundraiser".

How it works: Get families and friends to collect specially marked Pauls Collect-A-Cap milk caps from Pauls Full Cream & Smarter White milk in 2 & 3 litre bottles. Send your caps into the HD Centre and we will distribute them to Pauls.

Please make sure the caps are clean as they are ground and recycled after collection. Ensure that only Pauls specially marked caps are collected (the yellow caps with the Collect-A-Cap logo), No blank caps please.

Pauls will contribute 10 cents to our fundraising efforts for every specially marked Pauls Collect-A-Cap collected on our behalf.


Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors:

KG & C Gordon
R Ryan

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