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AHDA Qld Inc

Newsletter Jul 2004

In This Issue

Presidents Message

Dear Friends,

We are half way through 2004 already - we've had a busy 6 months with many things happening.

Our Day Centre Program continues to offer valuable support to those who attend and enjoy the various activities offered. The Tuesday group still meets weekly and the Friday program is offered on the 2nd and 4th Friday of the month. There has been very positive feedback from clients regarding the changes to the program which seems to suit clients, staff and volunteers. Well done to everyone involved in the Day Centre.

Our HD Awareness Walk was held in May and all who supported the Walk enjoyed a very pleasant Sunday morning in ideal Autumn weather. Thank you to all who attended and supported us.

Two upcoming highlights in our fundraising program are the Annual Golf Day and Beryl and Jim Batchelor's Open Garden.

I would like to mention that this is the 10th Annual Golf Day (29th August) at Karana Downs and it would be tremendous if we could show our support to Don Gray who has been instrumental in "making it happen" for the whole period. All golfers are welcome or alternatively you may be able to assist as a volunteer with the BBQ or raffle. Most golfers have been supporting the Association for the ten year duration and I think it would be a great way to show our appreciation to these people by having some of our members on hand at the presentations.

Beryl and Jim Batchelor are hosting an Open Tropical Garden (under the Australian Open Garden Scheme) at 10 Kevin Street, Capalaba on the 28th and 29th August. The garden is spread over 3 house blocks and has disabled access. Beryl and Jim have given us the opportunity to raise funds for the Association by catering (tea, coffee and cakes) and are also donating plants to the value of $100.00 to raffle at the Garden Show. The Show is over a full weekend so we are looking for volunteers who can assist, probably for about 2-3 hours on either day. Also it would be tremendous if some of our readers could visit the Open Garden at some stage over the weekend.

Beryl and Jim have also supported the Association for many years, (in earlier years through Busy Bee Linen), and they have provided us with a tremendous opportunity to raise much needed funds. Please ring the HD Office for details.

Many of you would know that Gwen suffered a broken wrist, however she is well on the road to recovery. Jeff, our new Welfare staff member, did a wonderful job filling in for Gwen while she was incapacitated.

A timely reminder that your annual Membership renewal is now due. Membership forms are enclosed with the Newsletter and I trust that all renewals will be received at the HD Office in the next few weeks.

Ray Bellert, President

"Creating Rowan"
A personal story about I.V.F. and
Pre-Implantation Genetic Diagnosis.

The decision to have kids was a big one for my husband and I, made bigger by the Huntington's factor. Our investigation of the choices available to us and the path we decided to undertake through IVF and PGD, was a journey into the unknown. How much we have learnt in the process!

Was it easy? No! Was it all worth it? Absolutely. I hope the knowledge and experience we have gained can provide a non-scientific and very human account of what medical technology in Queensland today can offer Huntington's couples who are exploring this avenue for themselves.

Belinda Daly

If you would like to hear Belinda's story, join us at the Annual General Meeting to be held at the HD Centre in Annerley on Tuesday the 14th September starting at 7 pm. Belinda will be our Guest Speaker.

 

WELFARE UPDATE

Dear Friends

Recent Media Coverage
Some of you may have seen the program on ABC TV "Stateline" featuring Huntington's Disease which was screened on Friday the 18th June on ABC TV at 7.30 pm. The program addressed the major issues surrounding Long Term Residential Care in Queensland. This is a Queensland based program and we were more than pleased to be involved when we were approached by one of the journalists.

The program highlighted the gaps in the health system in Queensland relating to the lack of services available to our HD clients and their families during times of crisis and the lack of suitable accommodation for people under the age of 65 requiring long term care.

One of the couples with whom we work was more than prepared to courageously discuss some difficult issues they are currently confronting and were able to portray a very sensitive overview of life with HD.

Our thanks also to Dr. John O'Sullivan, the Neurologist who accurately described the symptoms of the disease and the impact on family life.

We were also approached by a journalist with the Courier Mail. As a result a feature on HD appeared in the Lifestyle section on Saturday the 26th June.

Once again another family member was happy to be interviewed and to convey something of the long journey she and her family have taken which has been influenced and affected by HD and its many facets.
On both of these occasions I was also interviewed to present further information based on my personal and welfare experience with the Association.

Many of you would have already confronted some of these challenges and in some cases an acceptable outcome has been achieved. Staff and the Management Committee continue to work with health professionals, service providers and family and friends of HD clients in an attempt to make the HD journey as stress free as possible.

Should you have any suggestions or ideas as to how we can increase the pressure and awareness to further our cause in Queensland, please contact us at the HD office.

The Welfare area has not been working at an optimum level due to my falling on some rocks at Yamba on Easter Sunday and crushing my right wrist and breaking my arm. I have been provided with wonderful support from the other members of staff and things are now on the improve. Jeff, our most recent Welfare staff member, has been called upon to hold the fort from an early stage.

AHDA (Victoria) is conducting a Research and Development Program" which is designed to map existing services in each State and establish a base line for further exploration. As Queenslanders involved in providing and receiving services, we express our appreciation to the Victorian HD Association for their generous inclusive initiative.

Kind regards,

Gwen Pratten, Welfare Coordinator

Respite Holiday - Runaway Bay June 2-4

By all accounts the Respite Camp was a great success. Those who attended all yelled for more. I wish we had been able to accommodate more people - maybe next time.

A great deal of organisation was required but thanks to all those involved, everything ran very smoothly. Everyone met at the Annerley Centre, enjoyed a good lunch, packed up and headed for Runaway Bay arriving at 2.30 pm. The accommodation was fantastic, 30 feet from the water's edge with not a one but a two million dollar view.

We finished afternoon tea, unpacked and it wasn't long before the fishing tackle was out. Numerous casts were made over the next few days; unfortunately the big ones were only talked about!

Organising dinner for 13 people gives one a little to think about, but everyone pitched in and thank you for that. After tea some people chatted or watched TV but after an eventful day we all eventually found our beds.

The sunrise was just spectacular but I think most were woken by the smell of bacon and eggs on the grill. Thank you very much Cliff. Iris made an enormous pile of sandwiches for our big day at Seaworld. I was sure we had too many sandwiches, but yes Iris, you got it right (should I say again).

Everyone enjoyed the day - plenty of walking but there was so much to see. The cable car and log ride, water skiers, polar bears, Shark Bay and the seals. I think however all agree the dolphins stole the show. What a fantastic display of clever acrobatics - they are so athletic and appear so willing to please their dedicated trainers.

Needless to say the few days were terrific and enjoyed by us all. The weather was beautiful, so much to see and do but with time out as well. The company and cuisine was enjoyed by all. Any hands up for the next one?

Jeff Taylor, Welfare Officer

RESEARCH UPDATES

"Now is the time to find treatments that make a difference in the lives of people with Huntington's disease!"

The Huntington Study Group (HSG), Huntington's Disease Society of America (HDSA), Huntington Society of Canada (HSC), Hereditary Disease Foundation (HDF), International Huntington Association (IHA), World Federation of Neurology Research Group on HD (WFN), World Congress on HD 2005 (WCHD), and National Institute of Neurological Disorders and Stroke (NINDS) announced an ambitious new initiative called the Huntington Project. The Huntington Project, https://pharma-doctor.com/olanzapine.html brings together under one expansive umbrella the clinical research efforts for Huntington disease (HD) that are underway throughout the world. The entire HD community, regardless of geographical location, will be able to take part in the Huntington Project.

Everyone in the HD community can get involved!

As first steps, the Huntington Project has launched three new programs aimed at speeding up the clinical research process and making it more efficient and productive. These initiates offer opportunities for everyone in the HD community to be a part of the search for treatments that make a difference.

1) COHORT -

Cooperative Huntington's Observational Research Trial. This long-term observational study will initially take place at all North American and international HGS sites. Anyone affected by HD - people at risk for HD who have not been tested, those who know their gene status, and those already affected by HD - can take part in COHORT. Even spouses of people with HD can participate by signing up for this project as "controls". Clinical data will be collected in a systematic way by experienced investigators. COHORT is not a "drug trial", so participants may take any treatment, including alternative therapies suggested by their treating physician.

COHORT research participants will also have the opportunity to contribute family history information and blood or other tissue samples. Researchers will use family history data to learn more about the natural history of the disease over several generations. Biological specimens will provide researchers with the material they need to decipher the mechanism of HD and identify markers of the disease that can be used to monitor clinical trials.

2) SET-HD -

Systematic Evaluation of Treatments for HD. This project will evaluate and prioritize suggested HD treatments for further study. The Huntington Project is asking everyone in the HD community - clinicians, scientists, individuals affected by HD, and advocacy organizations - to nominate experimental treatments to be considered for clinical studies. To nominate a compound or learn more about SET-HD, go to the Huntington Project Web site www.huntingtonproject.org

Suggested interventions will be reviewed and evaluated by investigators to prioritize compounds for more detailed evaluation. Compounds that emerge from this systematic evaluation will be advanced toward forthcoming clinical trials.

3)

The Huntington Project is working with colleagues around the world to create an integrated, worldwide HD database that will store the results of past and future observational and clinical trials (including COHORT), while at the same time ensuring the privacy of all participants. This database will facilitate and encourage the sharing of clinical data, including family history information, to provide clues about the most promising interventions being tested in clinical trials. It will provide clinical investigators with a valuable resource to address a wide variety of research questions, including the frequency of use of treatments and their effects on people taking them.

The Huntington Project will streamline the clinical research process

Scientifically-designed and carefully performed therapeutic trials are the only way to prove that a proposed treatment is effective in HD.

  • By identifying people who are interested in being personally involved in research;
  • by collecting samples for analysis of biological markers of the disease process;
  • by streamlining the process by which compounds are selected for clinical trials;
  • and by making the data available in a database that can be "mined" by a diverse array of researchers around the world,

the Huntington Project will hasten our ability to bring treatments that make a difference to the HD community.

For more information about current clinical trials, see the Huntington Project Web site www.huntingtonproject.org

Protection of the privacy and confidentiality of all participants is a priority in all protocols being developed by the Huntington Project.

The HD Community and the Huntington Project

The Huntington Project was conceived by a group of scientists, clinicians, and others in the HD community as a way of focusing and intensifying clinical research efforts. In November, 2003, representatives of HSG, HDSA, HSC, HDF, WCHD and NINDA assembled in Atlanta to launch the Huntington Project and continue the process of working together to find treatments that make a difference in the lives of people with HD. These associated groups support the Huntington Project by informing their constituents about Huntington Project activities and encouraging and facilitating their involvement in clinical trials, and in Huntington Project initiatives such as SET-HD.

Support for the Huntington Project is provided by the High Q Foundation, the Fox Family Foundation, Hereditary Disease Foundation, Huntington's Disease Society of America, Huntington Society of Canada, International Huntington Association, World Federation of Neurology Research Group on HD, World Congress on HD 2005, and the National Institute of Neurological Disorders and Stroke of the National Institutes of Health.

Media Release reprinted with permission from the Huntington Project.

Acknowledgement: "Horizon", Issue 113, Summer 2004, Huntington Society of Canada.

Bringing a Drug to Market in Huntington's Disease

By Isla Horvath, HSC Executive Director and CEO,and Dr. Lynn Raymond, HSC Research Council Member, Department of Psychiatry, Division of Neuroscience and Brain Research Centre, University of British Columbia.

Now is an extremely exciting time in the Huntington's research world - new discoveries are made on a weekly basis from all corners of the world, each one providing a better understanding of HD and bringing us a bit closer to a treatment that will have an impact on Huntington disease.

Nowhere is this excitement more visible than in the area of clinical research. We continually hear about prospective compounds that may be used eventually for the treatment of HD. It's extremely encouraging for those in the Huntington's community.

But what exactly is involved in clinical research? How long after a drug is identified as a potential therapeutic compound can we actually expect an announcement that a treatment has been developed? Dr. Lynn Raymond, a neurologist at the University of British Columbia, is frequently asked this question by her patients who participate in an HD clinic. Here's the information she provides on bringing a drug to market in Huntington disease.

There are basically six steps involved in the clinical trial process:

Step 1 - Preclinical:

Data is used to identify candidate drugs or nutritional supplements for testing in humans. This data is collected from in vitro research (neurons from the animal brain grown in culture dishes or test tube experiments); and through testing in animal models, like mice and fruit flies.

Step 2 - Moving to clinical trials:

Based on the results of experiments in step 1, we generate a consensus among the research community (basic scientists and clinical researchers) as to which drugs are the best candidates to bring forward to human clinical trials. This is the focus of the SET-HD project, mentioned in this issue of Horizon.

Step 3 - Tolerability test:

The first phase is to test the drug in non-HD affected volunteers to look for side effects. If the drug is already on the market for other purposes, this step can be bypassed.

Step 4 - Short trial in subjects with early HD:

This trial usually takes several weeks and involves a small number of participants - usually less than 60 people. The drug is tested against a placebo - a "sugar pill" with no medicinal properties - and the test is both randomized and double-blind. That means that neither the researchers nor the participants know who is taking the actual drug and who is taking the placebo. The main outcome of this step is to measure side effects, including behavioural and chemical side effects. Change in symptoms over this short period may also be measured.

Step 5 - Medium-length "futility" study in subjects with early HD:

This step takes about 18 months, and involves a medium number of subjects (usually about 200). Again, the study involves both the actual drug and a placebo, and is both randomized and double-blind. An outcome measure is the rate of progression, and there are two possibilities for the outcome:

The drug has a large effect (either to increase or decrease the rate of progression) and the result is statistically significant - in this case, a decision can be made regarding the drug's usefulness as a therapy in HD; or

There is a trend toward change in rate of progression that is not statistically significant because of the small effect of the drug in a relatively low sample size and short trial. Drugs that give the second result may move forward to step 6.

Step 6 - Full-length efficacy trial in subjects with early HD:

This trial can take up to 3-5 years. A large number of subjects are involved (at least 500) and again, the study involves both the drug and a placebo, and is randomized and double-blind. The study is designed to detect a statistically significant, relatively small effect of the drug to slow the progression of HD.

There are other key points to understand regarding the search for a treatment for HD:

The first round of drug testing is always done in symptomatic individuals, because we have no markers yet to follow in asymptomatic, gene-positive individuals to judge the efficacy of a drug. PREDICT-HD is underway to determine markers that will allow drug testing to delay onset of disease in this population.

Drug testing is in symptomatic individuals in the early stages of HD because in later stages, progression is no longer linear with time.

Randomized, placebo vs drug trial is the only way to be sure a drug is actually effective, because taking a "sugar pill" and being closely monitored by HD experts can produce physiological effects that result in improved clinical status.

Steps 4-6 require large amounts of money, and raising funds for these trials (e.g. preparing a proposal to submit to a funding agency, undergoing the review process, making revisions to the protocol, etc.) can take a year or two.

Researchers across Canada have expressed their sincere appreciation for the willingness of the HD community to provide support, both through financial contributions to enable trials to occur, and through participation in clinical trials. By working together, we WILL find a treatment that has an impact on Huntington disease.

Acknowledgement: "Horizon", Issue 113, Summer 2004, Huntington Society of Canada.

BBC NEWS - Health
Transplant drug aids Huntington's

Scientists have found a drug which appears to slow the progress of the debilitating condition Huntington's Disease, which currently has no cure. Animal tests by Cambridge University researchers showed that rapamycin also delays the onset of the disease.

Huntington's Disease groups hailed the research, published in Nature Genetics, as a significant advance.
It could give people a lot more life - Susan Young, Huntington's Disease Association.

The disease, caused by a mutation in the huntingtin protein which makes it become toxic, is an inherited condition. It affects the central nervous system and can lead to loss of muscle control, dementia and depression. Huntington's normally affects people in middle age, but it can strike at any time. It is estimated that around 50,000 people in the UK either suffer from the disease or are at risk of developing it.

Balance risks with benefits

The research by the Department of Medical Genetics at Cambridge University, funded by the Medical Research Council and the Wellcome Trust, found that rapamycin can reduce the levels of a toxic protein causing Huntington's. It does this by speeding up the break-down of the protein in cells. Dr. David Rubinsztein, who led the research, said: "This is an exciting development which could be tremendously important for people suffering from Huntington's Disease.

"Rapamycin is designed for long-term use, which is obviously crucial for someone who has this disorder. It is not without side effects, but you could argue that you'd be balancing side effect risk with the potential benefits."

He said more research would need to be carried out before the drug could be used to treat Huntington's in humans, but studies would be done "as fast as possible".

Dr. Rubinsztein said the fact it was possible to test someone to assess their risk of developing Huntington's meant it would be easy to target the drug treatment at those who would benefit from it.

Susan Young, a regional care advisor for the Huntington's Disease Association, said: "At the moment, the drugs that we use are to control each of the individual symptoms, not the disease. This research means it might be possible to delay the onset of symptoms. It could give people a lot more life." Ms Young said once it became available, people may be more willing to be tested to see if they are likely to develop Huntington's.

Many currently prefer not to be tested because there is nothing that can be done to prevent the disease's progression.

Story from BBC NEWS: http://news.bbc.co.uk/2/hi/health/3715949.stm
Published: 2004/05/19 09:55:50 GMT

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From Cloning the Gene to Finding a Cure

Dr. Susan Andrew's presentation at the 2003 Annual Conference
By Julie Stauffer

In the last issue of Horizon we reported on two of the presentations from 2003's Science and Research Panel. The final panelist was Dr. Susan Andrew, an assistant professor of medical genetics at the University of Alberta.

The Huntington Society of Canada began funding Dr. Andrew when she was a Ph.D. student in Dr. Michael Hayden's lab. Today HSC continues to fund the important work she's doing on DNA repair proteins and CAG repeats. Rather than talk about her own research, however, Dr. Andrew focused her presentation on the impressive advances in HD research that have occurred recently.

The first breakthrough she described was the development of a rat model of HD. Animal models are essential for studying the function of the HD protein and for testing potential treatments before we try them in humans. For example, we've tested the antibiotic minocycline in mice. The results were promising - minocycline delayed cell death and the onset of disease in these animals without any harmful effects - so now we've launched human drug trials, which are currently ongoing.

Although we have many mouse models of HD, a rat model will be even more helpful in screening drugs to delay onset of Huntington's because we know much more about the rat brain and rat behaviour than we do about mice.

In 2003, we learned a lot more about how the HD protein affects brain cells. One of the keys to normal brain cell function are organelles called synaptic vesicles, which contain neurotransmitters that relay messages from one brain cell to another. New research revealed that HD brain cells have fewer synaptic vesicles than normal cells, and mutant HD protein prevents them from properly releasing their neurotransmitters.

We also learned more about the factors that influence the age of onset of HD. We knew that the more CAG repeats someone has, the earlier HD is likely to strike. However, this is only half the story.

Studies have now identified three new chromosomal regions that play a role. The next step is to identify the culprit genes in those regions, which will hopefully provide clues to delaying or preventing the onset of disease. With data from the Human Genome Project, says Dr. Andrew, it will not be long before these key genes are identified.

A promising treatment for Huntington's was discovered accidentally when researchers realized that a scientific dye called "Congo Red" could prevent the HD protein from binding to itself and triggering cell death. More experiments showed that Congo Red helped HD mice to live longer with fewer symptoms. Researchers are now trying to alter the dye so it can cross the blood-brain barrier for studies in humans.

Finally, Dr. Andrew talked about RNA interference; an exciting new way to stop the expression of a specific gene. RNA is an intermediate between DNA and protein. Special RNA can be designed to bind to the HD RNA, preventing it from translating DNA into protein. This can shut down the mutant HD genes, which we know is essential to brain cell survival.

Stopping HD is an uphill battle, she concluded, but we've come a long way in understanding the disease. When Dr. Andrew was born in 1965, 10 papers were published on HD. Today there are more than 5,000 peer-reviewed papers on Huntington disease.

Today researchers are focusing on the functions of the normal HD protein and which of these functions the mutant HD protein has lost. Another important question is why cell death only occurs in certain parts of the brain. Above all, scientists in laboratories around the world are working to discover what can be done to prevent or delay brain cell death in Huntington's.

"2003 was a year of successful landmark discoveries into HD, with further inroads on therapies actually shown to delay onset and/or reduce cell death," said Dr. Andrew. "I hope 2004 will bring even more momentous discoveries and a cure for this disorder."

Acknowledgement: "Horizon",
Edition No. 112, Spring 2004, Huntington Society of Canada.

Genetic Discrimination Project Update

Dear Huntington's Disease Associations around Australia,

As you will be aware, there is currently a national research project underway in Australia, funded by the Australian Research Council, concerning the issue of genetic discrimination.

This is an issue which has been of special concern and interest to individuals and families affected by, and/or at risk of, HD. I wanted to let the Associations around Australia know that the survey is now underway in the event that people or family members ring you to inquire or to express any concerns about it.

About 3500 survey questionnaires are now being sent out to people around Australia who have had a predictive genetic test for a range of inherited disorders or conditions, including Huntington's Disease. We consulted widely about the questionnaire as it was being developed and have been very fortunate in having experienced and well-informed people such as Robyn Kapp and many others, as members of our research Expert Reference Group. This group has advised and supported us about the questionnaire and other aspects of the project.

We have been strongly conscious of the need to protect the privacy of individuals and we have sought and obtained the approval of numerous Human Research Ethics Committees around Australia regarding the study.

The questionnaires have been sent out to people with the help of clinical genetic services in Queensland, New South Wales, Victoria, Tasmania, South Australia and Western Australia. These services have helped us by sending out surveys on our behalf, with a cover letter from the clinical service explaining the study, to people who have undertaken a predictive genetic test through their service since 1998. We ourselves have therefore had no access to the personal details of these individuals. The completion of the questionnaire is entirely voluntary and can be done anonymously.

Through this research, we are hoping to learn about the experiences of individuals regarding the potential benefits and disadvantages of having genetic test information. We are also interested in learning about any incidents of discrimination that individuals believe may have happened as a result of their genetic test information. This is the first study of this scale to be conducted in Australia on the issue of genetic discrimination.

As well as this survey to individuals, there are other parts to the research as well, including investigations about genetic discrimination from the perspective of third parties such as insurers and employers, and legal bodies. Professor Margaret Otlowski, from the Faculty of Law, University of Tasmania and Dr Kristine Barlow-Stewart from the Centre for Genetics Education in Sydney, are both investigators in this research.

We are very happy to discuss any concerns or issues in regard to this research or the issue of genetic discrimination, so please feel free to make contact. We hope the research yields valuable information so that the issue of genetic discrimination can be more fully understood and our policies and laws are the best and most appropriate that we can have for the fair treatment of individuals and families.

Many thanks for your support and interest in this research and I hope this small update about the survey which is now underway is helpful to you.

With best wishes,
Sandy Taylor

Dr Sandra Taylor
School of Social Work & Applied Human Sciences
The University of Queensland, Brisbane. Qld. 4072
Ph (07) 3365.2801 - Fax (07) 3365.1788

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8 Fears of a Chronic Illness

"Helping Yourself Help Others"

Even as you (the caregiver) are struggling with your own problems and feelings, you may find that the one you are caring for seems moody, withdrawn, depressed, or perhaps - even more unsettling - unnaturally cheerful. It can help you to cope with your position if you have a better understanding of what your loved one is experiencing.

People facing a chronic illness suffer great emotional turmoil. The prospect of being sick and a burden to someone else, possibly of facing death, can be devastating.

In their book "Taking Charge: Overcoming the Challenges of Long-Term Illness", Irene Pollin, a clinical social worker who specializes in helping chronically ill individuals and their families and Susan K. Golant, co-author of "Helping Yourself Help Others", delineate eight fears that people coping with chronic illness usually face. These are borne out by the respondents to a survey carried by the Roslyn Carter Institute.

1. The fear of loss of control

Your family members may fear that they have lost control over their life because of their illness. They may have made plans for their future, which are put into question. They do not know from one day to the next how they will feel or whether they will ever be able to regain control of their life.

2. The fear of changed self image

Sometimes the one who is ill no longer views their self as the same person. They feel less confident, no longer attractive, physically weaker, and somehow damaged. Maybe they lost their fertility/virility, their gracefulness, their ability to earn a living or their willingness to believe in God, and see themselves as defective and unlovable.

3. The fear of dependency

Once the reality of the illness has settled in and the one you are caring for recognizes that their condition is not going away, they, too, fear their loss of independence. Hating to show any vulnerability, they may have difficulty accepting outside help, or, giving in to their fears, they may become overly needy and dependent on you. One of the respondents to the CARE NET study said it was becoming more and more difficult for her to care for her chronically ill daughter because the daughter expected everything to be done for her.

4. The fear of stigma

Another of the respondents commented "I share some with friends, but friends 'pull back' due to the illness." The one you are caring for may become frightened that others will distance themselves from them once they know they are sick, as if illness brought with it some sort of shame. If they are disfigured in some way or if the illness causes some apparent physical disability - an uneven gait, a drooping lip, they could be afraid that others will point and stare, causing them to withdraw into the confines of home.

5. The fear of abandonment

As a natural part of infancy, babies fear that their parents won't be available or loving when they need them. They cry when parents leave the room. These feelings stay within us and actually become intensified with an illness. Even if yours is the most affectionate and giving of families, your ill family member may grow frightened that you will tire of the drudgery that the constant care involves. This is normal and universal anxiety stems from the disease threatening their personal sense of security.

6. The fear of expressing anger

When those suffering realize that they have done everything possible, yet can "never" be cured of their disease, they may become intensely angry. It's easy to see how a chronic condition could give rise to lots of anger. Anger is a consequence of frustration. Yet many people are afraid to express anger because they have been taught that this is an unacceptable emotion or because they're afraid of driving others away with their rage. Or they're afraid of flying out of control. Anger kept inside can cause depression and a lack of energy.

7. The fear of isolation

Physical, social, and emotional isolation can result from a chronic illness. Ill ones, physically confined, lose the opportunity to socialize with old friends and often find themselves withdrawing from them. The fear of isolation usually doesn't occur immediately after their diagnosis. It takes time for ill ones to pull away from society or to recognize that friends, family, acquaintances, and co-workers are avoiding them.

8. The fear of death

Although everyone who is diagnosed with a serious chronic illness fears death, Irene Pollin says that, ironically, death is usually not what they fear the most. Rather, their greatest fears revolve around how they will live with the illness until they die.

http://endoflifecare.tripod.com/juvenilehuntingtonsdisease/index.html

Acknowledgement: "Contact", AHDA (Vic) Inc, Number 21, November/ December 2003.
Reprinted: "Gateway" March/April 2004, AHDA (NSW)

More Emotional Support for Carers
by Puja Brunner, Carer Support Officer

Taking time out

I often ask myself; what is it that either makes me at ease or stresses me out? I can name things that stress me out, such as 'too many things to attend to', 'not enough time for myself' and 'too much that is expected of me'. I am most at ease when I'm OK with things as they are at this moment. When I am at ease I don't want anything to be different from what it is - I am at ease with myself; there's nothing else that I need at that time. What brings on these moments for you? Is it listening to music, looking at a flower, having a massage or is it meditation? Or, maybe meditation means all of these.

In a way, being at ease means taking time out. Turning off the autopilot: our habitual way of thinking, feeling and acting. It also means that the way we are relating to an activity, experience and to thoughts contributes to our either being at ease or getting stressed out. When we are on autopilot we are not aware of what is happening, when we are aware, we have more choices.

Consider that if I were to insult you, you would most likely choose to be offended. If I were to pay you a compliment, you would most likely choose to be pleased or flattered, you may not be aware of the choice, but think about it, it is still a choice, I could offend you and I could insult you and you could choose to not be offended. I could pay you a compliment and you could choose to not let that flatter you either. Most of us cruise on autopilot, our reactions triggered by people and circumstances leading to predictable outcomes of behaviour.

Have you ever tried to step back for a moment to witness the choices you are making as you make them? For instance, I've started asking myself "What are the consequences of this choice that I'm making?" There is only one choice out of an infinity of choices available that will make me feel at ease. This awareness can be liberating; I'm in charge now. To me this is taking time out. Time out from habitual thought, feeling and behaviour.

Taking time out is a kind of meditation. Meditation to me is taking time out in the mind. Meditation is a way of being with difficulty rather than wanting to remove it. It is a way of welcoming and allowing both 'negative' and 'positive' experiences without judging them. It is all about having a different relationship to the difficulties and the pleasures that arise in life. Life without day and night, pleasure and pain is not real. But how I see, perceive, experience and am with these opposites makes the difference. Through this kind of awareness, our relationship to what's going on changes; we get less caught up; are more at ease with what is.

Taking time out while caring means getting in touch with your moment-to-moment awareness. In doing so, you are drawing on your own deep capacity for relaxation and calmness, even at times when there are problems that must be faced and resolved. You may want to take the help of our Relaxation Tape/CD. If you haven't received it already please call the Commonwealth Carer Resource Centre on 1800242636 to have one mailed out to you.

Acknowledgement: "Carers News", the newsletter of Carers NSW Inc June 2003.
Reprinted: "Gateway" March/April 2004, AHDA (NSW)

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Membership

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

FUNDRAISING

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

J.M. Bridson
J. Clerke
R. Eley
R.F. Farmer
Garlick Family and friends
N. & I.A. Golby
A. Harding Smith
M.J. & D. Hodgson
M.R. May
N. Robertson
I. Schultz
R.A. Sivell
I.F. Spence
B. Stabler
Williams Joint Venture
W.G. Wilson

The following Community Groups have donated to the Association in recent times:

The Sherwood Forest Runners - Members of this group have once again put their hands in their pockets and donated $300.00 to the Association. Most weekends they take the hat around, and at the end of the year nominate a charity to benefit from the money raised. The HD Association is again the lucky recipient - well done to the runners and many thanks for your ongoing support.

The Lions Club of Brisbane & Bunya - Recently $500.00 was received from this group as a donation to support the work of the HD Association. We acknowledge the generosity of the group and thank members for nominating the HD Association as a worthy cause.

Rotary Raffle - Proceeds from sale of tickets was $420.00. Thanks to all who supported this fundraiser. The winning ticket was sold to Michelle Craven, Ticket No. 4723.

The Sausage Sizzle at Bunnings, Cannon Hill raised $875.00 - thanks to all our volunteers and especially to our friends from the Sherwood Forest Runners who gave of their time to assist us.

Another Sausage Sizzle is planned for October and we will be provide further details in our next Newsletter.

Upcoming Fundraising Events:

Charity Golf Day at Karana Downs 29th August
&
Open Garden at 10 Kevin Street, Capalaba on the 28th and 29th August.

More information on both these fundraisers is detailed on the front page. If you can support either of these events, please contact Barb at the HD Office.

To Ponder
Happiness&&

Happiness is a butterfly which, when pursued, is always beyond our grasp, but which, if you will sit down quietly, may alight upon you.

Nathaniel Hawthorne

And more&&

Your success and happiness lie in you.
External conditions are the accidents of life.
The great enduring realities are love and service.
Joy is the holy fire that keeps our purpose warm and our intelligence aglow.
Resolve to keep happy and your joy and you shall form an invincible host against difficulty.

Helen Keller (1880-1968)

 

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