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AHDA Qld Inc

July 2001 - Newsletter

In this issue:

President's Message
Welfare Update
Regional Support Groups
Scientists Find Solution to a Mystery surrounding Alzheimer's, Huntington's and other Neurological Diseases
Latest Research - released June 14, 2001
IHA: Spreading the word around the globe
Public Trustee Eases the Pain of Budgeting
A Grieving Child
"What can I do to get to Sleep"
The 7 Habits of Highly Effective Carers
Fundraising
For Your Diary

President's Message

Dear Friends,

As I mentioned in our last Newsletter, the 25th Anniversary of the inception of the Queensland Association is to be celebrated in September this year. A Registration Form for the Dinner and Seminar is enclosed. I urge you to participate in the planned activities to ensure the success of the celebrations through your involvement and acknowledgement of the Association's achievements.

I am pleased to acknowledge a grant of $3861.00 from Statewide & Non-government Health Services, Queensland Health for costs associated with the Seminar.

The Association is supporting Cathy Dart to attend the International Huntington Association Meeting to be held in Copenhagen, Denmark in August. Cathy is looking forward to bringing back details of all the latest advances in the research for a treatment for HD.

Many of our existing Committee members have been active supporters for a very long time and are deserving of a break. We always encourage members to join our Management Committee and invitations have been issued through the Newsletter and by word of mouth. However, we understand the challenges affecting many family members that often make commitment to the Association more difficult. For this reason we are considering reducing the size of the Management Committee, and also reducing the number of fundraising activities, thus relieving some of the workload we are currently experiencing.

Financial members of the Association contribute a percentage of the necessary funds to maintain the services we provide. Enclosed in this Newsletter is the annual membership request and I encourage everyone to renew or join the Association's membership and consider including a tax-deductible donation.

After 10 years at the helm, Tim McCarthy, the C.E.O. of the Huntington's Association in Victoria, has chosen to move on to pursue other interests. On behalf of the Association I would like to thank Tim for his significant contribution to Huntington's Disease, not only in Victoria, but Australia wide, and wish him all the best in the future. Glenys Frankly has been appointed as the new C.E.O. and we extend our congratulations to her.

I look forward to meeting with you during the 25th Anniversary Celebrations.
Gerry Doyle, President

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From the Welfare Staff

One of the issues I feel we need to address at this time is the structure of the Association's Management Committee as it operates at present, and a reflection on the past, from when this organisation was formed 25 years ago.

For those of you who were involved in those very early days, you will no doubt recall the effort required to raise awareness and money to assist families confronting Huntington's Disease. From that point of view, not a lot has changed. We are still constantly reviewing our strategies on how to promote services offered by the Association, be they very different from those early days, and our need to raise funds to maintain our existing services and look at expanding our network across Queensland.

Currently our Association consists of 12 Committee members; 2 full-time welfare staff, 2 part-time administration staff and 3 part-time Day Respite staff; a small band of volunteers, some of whom are members of support groups in Townsville and Bundaberg; and 483 members, a number of whom are not financial.

During the years we have raised money and awareness by way of street stalls, lamington drives, raffles, excursions, movie evenings, and linen parties to name but a few. In recent times these activities have not been well supported, thus requiring greater effort from less people to carry the load.

The Committee feels it is time for a change. One of the avenues we have to maintain our firm financial base is, for each one of us who value the Association and its membership to consider an annual donation in addition to yearly membership. If we were to be successful in this regard, we would reduce the pressure on the volunteers and contributors currently involved.

Providing we can maintain our level of income, regardless of its source, we are at least able to continue offering the existing services. If we all were to take up the challenge and elevate the needs of the Association in our list of financial priorities, we would be in a position to increase our services, particularly in the area of welfare in regional Queensland. Let us consider ourselves "Team Members" and see what we can achieve together.

An area of work which does not receive a lot of attention in our Newsletter is the valuable contribution of the volunteers involved in the respite program in Brisbane and the social program offered in Townsville, Bundaberg and the Gold Coast. The outings and regular contact enjoyed by people affected by HD in these areas would not be possible without the commitment, care and concern shown by many people, and I would like to express my appreciation to all involved.

You will read in this Newsletter about a recent respite holiday provided by the Townsville Support Group. From all accounts the effort involved was greatly appreciated by clients and carers alike.

Your welfare staff continues to keep busy and during July, Cathy will be visiting the Bundaberg and Maryborough districts and I will visit Townsville. In September Cathy will visit Mackay. We will contact the families and supporters we are aware of to arrange appointments. If you would like us to work with those who are providing services for you, please phone the Brisbane office. Kind regards to you all.
Gwen Pratten, Welfare Coordinator

 

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Regional Support Groups

Townsville Support Group - Respite Camp at South Mission Beach from the 25th to 29th May, 2001. Another successful camp was held with nine people attending, including three carers. Vic, Joan and Gavin travelled by road, transporting all luggage and food while Joyce, Belinda, Jenny, Julie-Ann, Rod and Lynn travelled by train.

On arrival at Tully, Vic was assisted by Ann, a local resident, with transporting everyone to our units at South Mission Beach. Vic was a superb organiser and meal planner, plus a great chef serving up hearty and delicious evening meals.

Lunches were special times as we had found a tropical paradise at Wongaling Beach Park nestled under huge trees where we ate freshly made sandwiches followed by hotly contested games of bocce. The winning team of Joyce, Belinda, Julie-Ann and Lynn shared their just rewards of Kit Kats with the others who finished strongly with Joan scoring them at 15-14.

On Sunday morning Vic drove Jenny, Julie-Ann, Belinda and Lynn to the monthly markets where the crafts were interesting and affordable.

We were invited to the home of Ann and Neil for lunch. They have a lovely position where you can enjoy both incredible sunrises and sunsets; most of us would have liked to take up residence if we were asked. Unfortunately we all had to leave after a very relaxing afternoon being entertained by their two staffordshire terriers, Bart and Maggie, who were loved by Belinda. Their cockatil, Caesar, was a favourite of Gavin, who is very keen to own a pair of them.

Ann and Neil were very warm and caring people who helped with our holiday providing transport and fresh fruit.

Our daily beach walks were popular and our only casualty happened on the beach when Rod dislocated his finger while getting up, after he slipped near an old tree trunk. Thank goodness Vic was able to transport us to the Wongaling Ambulance then the Tully Hospital for treatment. The timing was spot on, as Vic had already prepared another delicious meal before the emergency.

Train travelling was great, especially the return journey in the Queenslander with its roomier seating and punctual arrival.

It was a very busy and exciting time for us all, and well worth the effort.
Lynn Verzeletti and Joyce Jackson
Camp Carers

 

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Scientists Find Solution to a Mystery Surrounding Alzheimer's, Huntington's and other Neurological Diseases

Source: Stanford University (http://www.stanford.edu/dept/news/)
Date: 5/25/2001

Stanford researchers have found an answer to a long-standing mystery surrounding Huntington's, Alzheimer's, Parkinson's and other neurodegenerative diseases.

Their discovery, published in the May 25 issue of the journal Science, focuses on one of the telltale signs of neurodegenerative illness: the mysterious buildup of defective proteins in and around nerve cells.

Healthy cells have the ability to break down and eliminate unwanted proteins. But in neurodegenerative diseases, abnormal proteins clump together to form clusters - called aggregates - that interfere with the cell's normal functions.

"It's been known for years that most neurodegenerative diseases are associated with protein aggregates," says Ron R Kopito, professor of biological Sciences and co-author of the study, "but no one had a clue as to the exact relationship. Do aggregates cause the disease, or are they the result of the disease?"

To find out, Kopito and graduate student Neil F. Bence designed a laboratory experiment to assess the impact of protein aggregates on the inner workings of a cell.

Master controller

Their specific target was the proteasome - a barrel-shaped enzyme that Kopito calls the master controller of the cell.

"The proteasome is like a salami slicer that cuts protein molecules into little bits," he says. "It gets rid of abnormal proteins, and it breaks down and recycles regulatory proteins no longer needed by the cell."

Human cells contain thousands of proteins, each with a unique three-dimensional shape determined by specific genes. But random genetic errors and mutations may cause proteins to fold into the wrong 3-D configuration - often with devastating results.

One example is huntingtin - a protein found in healthy nerve cells. A slight genetic mutation may cause huntingtin proteins to fold incorrectly and accumulate inside the nerve. Defective huntingtin aggregates are common in patients with Huntington's Disease.

Proteasomes are supposed to slice misfolded proteins into harmless pieces before they have a chance to form aggregates, but how does a proteasome recognize an abnormal protein?

The answer: A tiny molecule called ubiquitin latches onto the damaged protein and carries it to the proteasome, where the protein is sliced and diced.

But in some diseases, the ubiquitin-proteasome system breaks down. Huntingtin aggregates, for example, contain thousands of misfolded proteins with ubiquitin flags attached to them. So why doesn't the proteasome recognize and destroy these ubiquitin-labeled proteins?

"People have speculated that the reason these proteins accumulate is because the proteasome isn't functioning properly. In our study, we put that to the test," Kopito says.

Green fluorescence

In their lab experiment, Kopito and Bence used human embryonic kidney cells instead of neurons.

To observe proteasome activity in the kidney cells, the researchers devised a genetic tool that causes specific cells to change color. Here's how it worked: They took advantage of a molecule called green fluorescent protein (GFP), which emits a green fluorescence when placed under a special light.
Although GFP is a very stable molecule, Bence and his co-workers engineered a mutation in the GFP gene that produces unstable proteins, which break down rapidly inside the proteasome. Mutant GFP genes were inserted into the kidney cells, producing unstable proteins that glowed green - but only when they remained intact. When a GFP molecule was chopped into fragments by a proteasome, the green fluorescence did not appear.

"The level of green fluorescence indicated how efficiently the proteasome was breaking down proteins," says Bence, lead author of the Science study. "If the cell glowed bright green, then we knew the proteasome was not functioning."

The researchers wanted to see what would happen to unstable GFP if normal huntingtin genes were inserted into the kidney cells. The result was clear: The cells did not change color - a strong indication that the proteasome enzymes were doing their job slicing up GFP and other unwanted proteins.

But when Bence and Kopito inserted a mutant huntingin gene, the cells turned bright green in a matter of hours. The change in color was accompanied by a buildup of defective protein aggregates inside the cells.

They tried the same experiment using genes that produce mutant forms of CFTR - a protein that has been linked to the disease cystic fibrosis. The results were the same: Cells containing mutant CFTR proteins also formed aggregates and became brightly fluorescent.

"The key finding in our study is that the function of a proteasome can be impaired by the presence of protein aggregates," Kopito says. "These results provide the first well-documented linkage between protein aggregation and a critical cellular function. If the proteasome isn't working properly, it is unable to perform its regulatory function, which is very bad for the cell."

Cause or effect?

Returning to the original question, do aggregates cause diseases, such as Huntington's and cystic fibrosis, or are they a consequence of disease?
"Our study shows that aggregates themselves can affect the proteasome and cause toxicity," concludes Bence.

It is a vicious circle, he points out: "The disease produces defective proteins that clump together into aggregates. Then the aggregates build up and interfere with proteasome function, which results in the production of more aggregates that further impair the proteasome."

The relatively slow buildup of aggregates in and around nerve cells could explain the latency of many neurodegenerative diseases, adds Kopito.

"The effects of aggregate formation can remain silent for a long time until aggregates build up to the point where onset of the disease occurs suddenly," he says. "That may be why these diseases usually appear in adults. The same is true with ALS, or Lou Gehrig's disease. Gehrig was a spectacular athlete who lost the use of his muscles in the prime of life and ended up paralyzed."

If it turns out that aggregate proteins are the toxic agents that kill cells, then one treatment would be to dissolve the aggregates or prevent them from forming, notes Kopito.

"Our study shows that a cell turns brightly fluorescent when the proteasome shuts down. That's simple. But the study doesn't tell us why it shuts down," says Bence.

"We believe there are complex causes for the impairment of the proteasome," adds Kopito. "A likely cause is a problem inside the proteasome that prevents proteins from passing through. Imagine a rope with a knot in it. The aggregate can function very much like a knot. Other studies have shown that proteins that do not unfold properly can get stuck inside the proteasome. We want to conduct another experiment to see if aggregates get stuck, too."

In addition to Bence and Kopito, the May Science study was co-authored by Roopal M. Sampat, a graduating senior in biological sciences at Stanford.

 

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Latest Research Findings May Yield New Approach for Developing Effective Therapeutics for Huntington's Disease

Source: Huntington's Disease Society of America - www.hdsa.org
Date: 14/6/2001

New York, NY, June 14, 2001 - Elena Cattaneo, Ph.D., (University of Milan) a member of the Huntington's Disease Society of America's (HDSA) Coalition for the Cure research group, has uncovered a role for normal huntingtin protein within the brain - to stimulate production of a protein that can protect nerve cells from damage. This significant discovery may lead to the development of effective therapeutics for Huntington's Disease (HD).

HD is an inherited, degenerative brain disorder that results in the progressive loss of control of both the mind and the body. Each child of an affected parent has a 50% chance of inheriting the disease. Currently, there is no effective treatment or cure for the 30,000 Americans and 200,000 who are at risk to inherit this deadly illness.

HD is caused by the presence of an abnormal mutant huntingtin protein in striatal nerve cells, which causes them to die. However, the nerve cells also possess a normal version of huntingtin protein whose full function in the cell is not yet understood.

Mutant huntingtin protein causes striatal neurons to die, although the precise way that this happens is not yet known, causing the symptoms of Huntington's Disease. Cattaneo's team found that one role played by the normal huntingtin protein is to help regulate the production of BDNF, a protein essential for the survival of striatal nerve cells. This activity was not provided by mutant huntingtin, suggesting that in HD patients the nerve cells have less BDNF to promote their survival.

Much additional research must be completed before these findings can help patients, and we want to be clear that this is not a cure," says Cattaneo. "But, we're optimistic that our work will help guide the development of new therapies, such as drugs to replace or boost the activity of normal huntingtin, or to increase levels of another brain protein, BDNF."

The basis of Cattaneo's research was to determine how normal huntingtin may protect cultured rat striatal nerve cells from death that is initiated by mutant huntingtin and to test whether neurons sickened by the mutant protein had lost the potential 'protective' pathway.

Through further examination of cultured CNS cells and animal models of HD, Cattaneo's research team revealed that the mutant huntingtin leaves neurons vulnerable to damage as the transcription of the BDNF gene is impaired, resulting in lower levels of this neuron-protecting protein.

Cattaneo speculates that loss of other essential proteins in neurons already sickened by defective gene products may play a role in several other neurodegenerative diseases. The federal government has recently recognized Huntington's Disease as a "model" for other neurodegenerative diseases. The answers we find for HD today may lead to therapies, and ultimately a cure, for Parkinson's, ALS (Lou Gehric's disease), Alzheimer's and other related diseases.

"The momentum in HD research continues to accelerate and we are very hopeful that effective therapies, and ultimately a cure, for Huntington's Disease are well within our reach," says Barbara Boyle, National Executive Director/CEO, HDSA.

For more information, please contact the Huntington's Disease Society of America at 800-345-HDSA, hdsainfo@hdsa.org, or visit the national web site at www.hdsa.org. HDSA is committed to making this the last generation with HD.

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International Huntington Association: Spreading the Word around the Globe

By Ralph Walker, Huntington Society of Canada Founder and a Past President of the IHA.

"Individual people can make an impact, and when you're a group like this all across the country you make a bigger impact and when you're international, you make an even bigger impact. There is absolutely no question that the Huntington movement we're all part of is considered one of the most successful in the entire world. And what are we? Just individuals getting together and saying, "This disease cannot get me down, I'm going to conquer this thing. And we're going to do it soon. We're going to do it in the lifetime of ourselves and our children."
- Dr. Nancy Wexler

1967
Five families meet with Marjorie Guthrie in New York to begin the first volunteer HD organization in the world. While leading this group Marjorie was also offering encouragement and support to individuals expressing interest in developing a lay organisation in other countries.

1974
Maureen Jones from the UK and Ralph Walker from Canada attend the annual meeting of the American HD organization to meet with Marjorie. They agree to start an international HD association and invite the developing HD Association in Victoria, Australia, to join with them.

1976
Marjorie Guthrie invited to Holland to visit Dutch scientists and met with 200 family members, including Gerrit Dommerholt, who would later take up the international development cause after Marjorie's death in 1983.

1977
The World Federation of Neurology Research Group on HD meets in Holland so the new Dutch lay group invites existing lay organisations which now include Belgium and France to meet at the same time.

1979
International Huntington Association (IHA) formally established, with Marjorie Guthrie as President at the meeting held in Oxford, England. Member countries include: Australia, Belgium, Canada, France, Netherlands, New Zealand, UK, USA and West Germany.

1981
Italy now represented at the IHA meeting which is held in Belgium.

1983
Genetic marker for HD gene is found, and Canada hosts the IHA meeting in Niagara Falls. Betty Teltscher from Australia is elected President.

1985
Thirteen countries, now including Denmark, Ireland and Norway, meet in France for IHA meeting. Ralph Walker is elected President, and Predictive Test Committee is established to draft guidelines for when a predictive test is made available for those at risk for HD.

1987
Sweden, Israel, Finland and South Africa newly represented at the IHA which meets in Italy.

1989
Canada hosts IHA meeting in Vancouver, welcoming for the first time representatives from Spain, Switzerland, India and a delegate from behind the Iron Curtain (East Germany). Gerrit Dommerholt is elected President.

1990
Political change in Eastern Europe makes it possible to make contact with HD families and physicians in countries such as the Czech republic and Slovakia.

1991
IHA welcomes delegates from Austria and Scotland at its meeting in Cardiff, Wales.

1993
The gene for HD is isolated. Gerrit Dommerholt completes four-year term as IHA President, and agrees to become the International Development Officer, working part-time for the IHA without pay. IHA meeting in Boston welcomes delegates from Ecuador, Indonesia, Mexico, Northern Ireland and Russia. Robyn Kapp is elected President.

1995
The IHA meets once again at the same time as the WFN in Leuven, Belgium and welcomes delegates from Hungary and Malta.

1997
The IHA and WFN meet for the first time in the southern hemisphere - in Sydney Australia. IHA now has representation from Japan, Finland and Pakistan and Sue Watkin from the UK is elected President. An IHA Web site is established: www.huntington-assoc.com with help from the Spanish HD Association. Since June 1999, more than 13,000 people from 74 different countries have visited the web site.

1998
With the help of the HD Association in Spain, growing demand for information about HD in Spanish is answered. New members to IHA include Brazil, Portugal, Uruguay, Venezuela and Slovenia. As well, the European Federation of Neurological Societies begins to assist in the IHA's work.

1999
HD resource material is translated into French and distributed to Switzerland, France, Luxembourg and the Wallonian section of Belgium.

In April Gerrit began a 15 day, 4,5000km trip by car, visiting the Czech Republic, Slovakia, Austria and Slovenia. He addressed family members, doctors and other health professionals and nurtured the creation of an HD Society in Slovenia. Initial contacts received from Argentina, Chile and Turkey. At the joint meeting of the IHA and the WFN in Holland, over 160 scientists and physicians from around the world who are interested in HD research, and 85 representatives from 26 countries share their knowledge and experiences.

2000
IHA develops contact with Greece where two brochures are already translated, and a lecture on HD is delivered at EXPO 2000 in Hanover, Germany. A representative from the Spanish HD Association is a delegate to a conference of the Movement Disorder Society in Barcelona; a representative from the Danish HD Association is a delegate at the conference of the European Federation of Neurological Societies in Copenhagen.

The development work of Gerrit has paid off with the creation of an HD Society in both Argentina and Venezuela. Contacts are also identified in Peru, South Korea and Thailand.

2001
IHA develops contacts in Cuba, as a result of a Cuban physician going to Spain to learn more about HD. This year the IHA meets in Copenhagen, Denmark along with the WFN to once again share our knowledge and experience of Huntington's Disease.
In Conclusion
There is no doubt that the IHA is making enormous progress. The passion and determination that so characterised Marjorie Guthrie's initial work is continuing with Gerrit's energy and dedication. The IHA Board is committed to continuing its support of this very important development work. However in spite of the progress made thus far, lack of funding of the IHA is delaying development. We are not able to give financial support to new countries struggling to start a new organisation. We are not able to help with the funding of literature in the language of a particular country. Both are frustrations that confront Gerrit on a daily basis. We are grateful for the generosity of a number of associations, including Australia, for their support of the IHA. This support must continue and we must find other sources of funding. The IHA must continue to light candles around the world so that no country need curse the darkness.

Acknowledgement:
Originally printed in "Horizon",
No 100, Spring 2001. Huntington
Society of Canada.Additional material
provided by Ralph Walker, Past President,
IHA and Robyn Kapp, Secretary, IHA.

Reprinted from "Gateway" March/April 2001, AHDA (NSW) Inc

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Public Trustee Eases the Pain of Budgeting

The Public Trustee has been providing trustee services to Queenslanders for over 85 years. There are 16 regional offices around the state dedicated to providing affordable and accessible trustee, legal and related services to citizens of Queensland.

One of the main roles of the Public Trustee is to assist adults with impaired capacity to manage their financial affairs. This can be either as a financial attorney under an Enduring Power of Attorney or as Administrator under an order of the Guardianship and Administration Tribunal. Managing someone else's money is a serious responsibility underpinned by laws that carry penalties for failing to perform one's duty.

Ease conflict in relationships
Acting as administrator or financial attorney is also a challenging role and involves balancing an adult's right to self-determination against ensuring financial security and promoting quality of life. It is difficult for a relative or carer to meet this obligation and at the same time maintain a relationship with the adult. Sometimes what you could do as a friend or relative conflicts with your legal obligation as Administrator or financial attorney.

Anna was about to be evicted for failure to pay her rent. Anna had a mental illness, no family and risked being forced to live on the streets. Anna's social worker applied to the Guardianship and Administration Tribunal to have the Public Trustee appointed. The Public Trustee sat down with Anna and her social worker to draw up a plan. Everyone agreed that the Public Trustee would receive Anna's pension, ensure her rent was paid and credit the balance to Anna's bank account to meet her living expenses. One of the things Anna wanted was a holiday. It was agreed that a small amount would be retained each fortnight and invested by the Public Trustee. These savings built up and when Anna needed glasses, the Public Trustee paid the bill on her behalf. That summer, Anna had saved enough money to enjoy a two week holiday on the coast.

Joe was arrested for unpaid fines. He got by on the Disability Support Pension and couldn't afford the $1,200 he owed. Joe had to pay the fines or serve time in jail. Joe was estranged from his parents and felt they would not pay the fines for him. Past experiences had taught his parents there was little likelihood of getting their money back. Joe rang his Trust Officer from the police station and expressed his fear at going to jail. His Trust Officer rang Joe's parents and explained the Public Trustee would ensure Joe paid them back at $20 per fortnight. Joe's parents paid the fines and the Public Trustee ensured a regular deposit was credited to the parents' account. The Public Trustee's involvement removed the financial conflict between Joe and his parents, enabling them to resume their relationship.

Individuals receive tailored service
The Public Trustee has been working hard to improve the quality of service provided to adults with impaired capacity. This included the introduction of five Client Service Standards with a focus on promoting the participation of adults and their support network in financial decision making. Central to this is the drafting of a Client Service Plan.
The plan ensures service is tailored to individual needs and fits in with the adult's values as well as the support provided by other members of the support network.

Service is provided to over 5,000 adults with impaired capacity. The Public Trustee's experience ranges from managing pensions to extensive investment portfolios and running large businesses. This may involve the payment of accounts, the investment of funds and even purchasing decisions. The Public Trustee has professional investment, taxation, legal and disability support sections to meet the needs of clients.

For more information, contact your local Public Trust Office.

Acknowledgement - Article reprinted with permission from ARAFMI from "ARAFMI News" May-July 2001.

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A Grieving Child
By Cherie Dalton

Children commonly experience grief following the loss of something or someone important in their life. It is often difficult for parents to know how to deal with a child in grief since they are often dealing with their own loss at the same time. But there are practical things parents can do to help their children work through grief.

Although grief is a normal reaction to loss, people grieve differently. While children's grief reactions differ in many ways to adults, under the surface, people of all ages tend to move through similar stages as they deal with their loss.

Children may:

  • Confuse the cause of the loss
  • Believe that the situation is reversible
  • Be more prone to denial
  • Use fantasy to cope with their feelings
  • Listen intently and watch others' reactions
  • Ask lots of questions
  • Re-enact parts of the event in their play
  • Fill in the gaps with their imagination
  • Need repeated explanations
  • Hang onto the belief that the loss has not occurred (for example, believe a person is still alive or that divorced parents will reunite).

Seven tips for helping a grieving child:

1. Reassure the child of their own safety (and the safety of other family members) as soon as possible after the child learns of the loss.
2. Return to daily routine and regular parenting patterns as soon as possible.
3. Talk to the child about death or loss in general and about the nature of their personal loss.
4. Use language suitable for their age to help them understand their situation fully.
5. Allow and encourage them to play out the situation or feelings with imaginary friends, dolls, or other objects.
6. When a new member is added to the family, accept that a child often finds it difficult to form new attachments and may try to keep their loyalty to the last person.
7. Remember that children may return to previous stages of grief that were thought to be resolved. This may occur around times of transition such as when the child begins school or a new sibling arrives. A child needs to be encouraged to work through these unresolved stages through talking, drawing, and play.


"What can I do to get to Sleep?"

This is one of the questions we are most frequently asked. Irrespective of a client's other problems, sleeping difficulties are usually also present, either as a part of their primary condition or as a disorder in its own right.

Sleeping difficulties can have major adverse effects on a person's life. Such difficulties can lead to psychological distress, impairment in daytime functioning, involvement in fatigue-related error-making or accidents, increased use of sick leave, greater irritability and depression, and prolonged use of minor tranqualisers.
We use three major treatment components when faced with clients reporting sleep difficulties.

Behavioural Component
People experiencing difficulty sleeping can develop maladaptive coping strategies, which ultimately interfere with sleep and maintain the problem. This component aims to strengthen the association between bedtime and sleep, and consolidate sleep over shorter periods of time in bed.

Cognitive Component
Maladaptive thoughts are instrumental in producing emotional arousal, which in turn maintains sleep difficulties. Thus, maladaptive thoughts must be identified, challenged, and replaced with more adaptive substitutes.

Educational Component
Many lifestyle and environmental factors (diet, exercise, alcohol, substance use, noise, light and temperature) affect sleep. This component of treatment aims to heighten the client's awareness and knowledge of the impact of health-related habits and environmental factors on sleep, and to promote better sleep practices.

If you identify a person with sleep difficulties, don't hesitate to refer them to Psychology Consultants. Often a very brief, targeted intervention will successfully turn their difficulties around. If you would like more information, call Psychology Consultants on 3395 8633. We would be happy to discuss sleep with you over the phone.

Acknowledgement: "A Grieving Child"
and "What can I do to get to Sleep?"
were reproduced from "Communiqué",
a quarterly newsletter for clients and referrers
- Psychology Consultants Pty. Ltd.,
Issue 9, March 2001.

 

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The Seven Habits of Highly Effective Carers

Learn as much as possible about your relative
or friend's illness/disability.

Understanding the needs and behaviours of the person you are supporting is important. Knowing which behaviours are a symptom of the illness or condition will help you to not take things personally. It will also help with understanding medication use and what to do in an emergency.

Share the care with family, friends and community services.
Caring is often more than a one person job. Don't wear yourself into the ground by expecting that you have to do everything on your own. Research has shown that the carers who feel most in control of their caring situation are those who have the most assistance. Community services are there to help so think of yourself as a care coordinator.

Look after your own physical and mental health.
You cannot care for someone else if you do not look after your own health. Remember, you are only human. Try to get regular rest, exercise and eat healthy meals. Take time out to relax if necessary. Use respite care for regular breaks.

Get as much information as you can on all the types of assistance available and use them.
Apart from community services, there may be financial help that you are entitled to, or schemes that provide equipment etc. Ring the Carer Resource Centre on Freecall 1800 242 636 to find out what you can get.

Attend to your emotions and talk to professionals if necessary.
It is normal for carers to feel anger, guilt, frustration, sadness, grief, fear, worry and hurt. You are not alone in these feelings. Connecting with other carers through support groups is one way to overcome isolation. If you want to change something about your caring situation, talking to a counsellor may help you sort out your options.

Be Assertive.
If you need help, don't be afraid to ask. If you have trouble getting the help you need, staff at the Carer Resource Centre may be able to advocate on your behalf. Also, make sure the doctor or doctors involved know how caring is impacting on you. You also have the right to complain if services do not provide assistance of high quality.

Plan for the future.
Don't wait until the last minute to organise wills, power of attorney or residential care for an emergency. Preparing for these things in advance, such as having an emergency care plan, will help give you peace of mind and save you from having to do these things at a more stressful stage.

You can contact your Carer Resource Centre by phoning Freecall 1800 242 636.

Thanks to Carers NSW for providing this article.

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A thought&

Never bear more than one kind
of trouble at a time.
Some people bear three..
all they have had,
all they have now,
and all they expect to have.

Edward Everett Hale

Fundraising
Rotary Trailer Raffle - This Raffle will be drawn on the 26th June (about the time the Newsletter goes to print) and the results published in the Courier Mail on the 28th June, 2001. Our thanks to all who supported this raffle and a sincere "thank you" to Nola Slade, Kay Burgerhof and Heather Fox for selling tickets on our behalf at the Truck Show and Caravan Show. We hope to raise approximately $500.00 for our efforts.

Future Fundraising Activities -

Cookie Drive - The Management Committee has decided to postpone the Cookie Drive until later in the year. Look for order forms in a later Newsletter.

Charity Golf Day at Redbank Plains - 26th August - If you are able to form a team of 4 players, or just come along by yourself, please contact Barbara at the office for further details.


Thank you to Hedy and Patrick Keogh who continue to raise funds for the Association. Whenever Hedy and Patrick hear of a venue in the Ipswich area where they can spread the HD message or raise funds on our behalf, they pack their bags and go! In early June they raised $100.00 by selling lollies, cakes etc. at an Open Day at the Ipswich Library. Their ongoing support is very much appreciated.


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

J. & G. Clerke
I.M. Hedlefs
C. Hoare
K. Horton
Ipswich City Council
I. McAlister
J. Pawsey
G.R. Phillips
B. Teis
Williams Joint Venture

Membership
Our financial year commences on the 1st July and annual membership fees become due at that time. Please see our Membership Form. We encourage you to renew your membership by completing this form and returning it to the office, along with the appropriate fees.

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For your Diary

August 2 Townsville Family Support Meeting - 7.30 pm at 59 Cambridge St., Vincent
August 14 Bundaberg Family Support Meeting - 7.00 pm at Railway Hotel, Bundaberg
August 21 Management Committee Meeting - 6.00 pm at HD Centre, Annerley
August 26 Charity Golf Day - Redbank Plains
September 18 Management Committee Meeting - 6.00 pm at HD Centre, Annerley
September 28/29 25th ANNIVERSARY CELEBRATIONS
September 29 AGM
October 4 Townsville Family Support Meeting - 7.30 pm at 59 Cambridge St., Vincent
October 9 Bundaberg Family Support Meeting - 7.00 pm at Railway Hotel, Bundaberg
October 16 Management Committee Meeting - 6.00 pm at HD Centre, Annerley

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Copyright © 2001-2019 Australian Huntington's Disease Association (Qld) Inc. All rights reserved.