Newsletter December 2002
In This Issue
During November the Association hosted an Awareness Seminar for professionals working with or interested in knowing more about Huntington's Disease. 66 people attended, and the positive feedback indicated further seminars should be planned. It is felt that the Gold and Sunshine Coasts and regional Queensland would benefit from this form of education and some "hands on" experience.
HD Awareness Week in November also provided the opportunity for the first HD Awareness Walk. The starting point was from the Maritime Museum at South Bank, across the Goodwill Bridge, into the Botanical Gardens and returning to South Bank. Over 60 people participated in this informal activity and we plan to repeat this event next year. Keep your eye on future Newsletters for information relating to some of these activities.
Thank you to members who have renewed their Membership and for the many donations accompanying the fees. If your Membership fees are still outstanding, could you please return your form along with the appropriate fee at your earliest convenience.
I would like to wish you all a very Merry Christmas and a happy and healthy New Year and look forward to your continued support in 2003.
As we draw to the close of yet another busy and eventful year I would like to reflect and revisit some of the highs and lows that we have encountered during the past 12 months.
Representatives from all States met in Perth in April to discuss National issues and to attend the first Seminar ever held in Western Australia for families affected by Huntington's Disease and interested professionals. A further meeting was attended in Melbourne in November to continue discussions on the future of the National Body. I will keep you up to date in our next Newsletter as to the progress in that area.
Cathy Dart resigned in March, after working with us for nearly 4 years. Preceding her resignation, we had advertised for an additional Welfare Officer to join our ranks, working 24 hours per week. As a result we employed two Welfare Officers, and are now benefiting from the extra hours provided to the service and the broad experience and enthusiasm Kellie and Jan have contributed.
In July the Association held a Respite Holiday at Bribie Island for 8 men with HD. This was a very successful 3 days and once again friendships were made and confidence gained from communicating with people in a similar situation. Thanks to Kellie and Cliff for their involvement.
As a spin off from the clients' Respite, we planned the first Carers' Retreat in October. This was a 1 day activity held at the HD Centre in Annerley with 8 women participating. The feedback was very positive and further meetings of this type will be programmed for 2003.
The extremely successful Day Respite Program at Annerley continued throughout the year with a regular attendance of 16-18 clients. Once again, if you or your family member is interested in attending this Tuesday gathering, contact us at the HD Office and we will be very happy to discuss details such as transport etc. with you.
With the additional Welfare hours, we have been able to increase our presence in regional areas. Kellie is a regular in the Gold Coast area, with all three of us sharing other parts of Queensland. Many education sessions have been held and very well attended in nursing homes, hospitals and community service agencies such as Blue Care, St. Lukes, Community Health and Community Mental Health. Putting a name to a face enhances our ability to meet the needs of our many family members who depend on community based services to allow them the option to remain in their own homes.
Happy Christmas to you all, and the Welfare staff looks forward to working with you in 2003. Kindest regards,
The following feedback was received from 3 women who participated in the Carers' Day Retreat.
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Gold Coast Support Group - Every six weeks or so a group of people touched in some way by HD get together for coffee and a chat. The Group has a consistent attendance of about 10 people, and has been meeting regularly for the past 2-3 years. Group members not only enjoy the social involvement and friendship the meetings provide, but it is also a valuable way to give and receive support from people going through similar experiences. At least one Welfare staff member is present at the meetings, so this allows regular contact with the Association and is an ideal forum for discussion regarding research updates and other issues. Group members always have a very warm welcome for new people, and are keen to see the Group grow. So if there is anyone on the Gold Coast who is interested in attending a meeting in the future, please call Kellie at the HD Office on (07) 3391 8833 for further information.
At this time, a similar support group in Brisbane does not exist. We are very keen to assist in the development of a Support Group if there is sufficient interest in the metropolitan area. If you are in any way interested in meeting others in a similar situation to yourselves in an informal and friendly environment, please call the office and speak to any of the Welfare staff.
Bundaberg Support Group - With the year coming to a close, I would like to thank Nancy for her ongoing support to families affected by HD in the Bundaberg area. Nancy and her helpers have also been busy selling tickets in the Rotary Trailer Raffle. A big thank you to you all.
Fran, our Treasurer, has done a great job once again and I thank her for the contributions she has made over the years. Ros and Co. from Gracie Dixon Respite Centre provide a wonderful service to families in the area - we certainly appreciate their support.
Wishing you all a Happy Christmas and a safe and healthy break and we'll see everyone back next year.
Townsville Support Group - The Support Group has been busy helping Barrier Reef Lions Club sell Christmas Art Union Tickets in their giant Christmas Hamper. Many thanks to the people who helped with this task. With the reduction in our membership due to people transferring to new locations and private commitments, the Group has cut back on fundraising this year. However we are in a sound financial position to provide support to clients and families in the Townsville area.
In September we had a visit from our new Welfare Officer, Jan Hannah-Munster. Jan visited many families in the district. The Group arranged a picnic at the Strand Park to welcome her - all had an enjoyable morning meeting and talking with Jan.
Gavan has taken up a position as an English Teacher in China about an hour's ride in a ferry from Hong Kong. We all send him our best wishes in his new endeavours.
Wishing you all the best over the coming festive season.
Maintaining composure and focus in your relationships, not only with the person you care for, but also with your partner, parents, children, relatives and friends, in spite of the difficulties you face daily, provides a perfect platform for tension and conflict. No matter how long you have been caring, the fact that you do it day after day brings particular challenges. One of those is being heard and understood.
How often do you feel that your buttons are being pushed? When this happens, how do you react and how do you feel? Do you tend to go silent, feel fearful, seek revenge, blame someone or something else, have a good cry or get angry? Tension in relationships happens and we all know that relationships can be hard work. When you are faced with caring for a parent, child, partner, friend, or relative then you are under increased pressure as the relationship changes, possibly becoming more complicated.
Carers tell us that what was once easy to talk about or discuss has become difficult - there can be many reasons for this. Often there are heated arguments, ending in resentment, unhappiness and tension. It can be hard to resolve an issue when people are feeling angry, misunderstood or if the situation has been left unaddressed for too long. It doesn't help when one party blames the other person or someone else for how they feel. Take a moment to reflect on the last time you had an argument. What did you feel, what did you think and what was the outcome? There are a few ways an argument can turn out. There is the win/win situation where both parties feel heard and understood and agree on the result. A win/lose situation with one person pushing their point of view and feeling better at the cost of the other person. Then there is the lose/lose situation where nothing is resolved with each person, not only feeling that they haven't been heard or understood, but also left with a sense of mistrust or resentment towards the other person.
I was reading an article recently on communication. Here are some of the facts that were quoted:
So what does all this mean? If you want to be heard, understood and to have your concerns valued then it is important that you are willing to listen. When you listen, you learn what others know, believe, or are thinking about. This can be confronting when their knowledge, beliefs and thoughts differ from what you thought they were. Many people today have mastered the art of 'pseudo-listening'. This happens when the 'listener's' thoughts are elsewhere, they don't look at the person and/or continue 'doing' whatever they are doing and often answer with a well-timed 'okay'. Hence the phrase "you're not listening to me" comes to mind. It can be difficult to stop and listen when your mind is crowded and distracted. Then there is always the opinion that is opposite to your own. Nothing stops anyone listening quicker and creates a reaction than this. It's always important to think about the person's tone or how they sound before reacting to someone. There may be a good reason for this.
John Maxwell provides some guidelines for trying to resolve an issue while at the same time building confidence and trust in a relationship:
(Reference Maxwell 2002 & Martin 2002).
I would also suggest using words that open up the discussion. Use words like what, how, where and when in questions and phrases.
Also, try to avoid using the why type questions or statements as they can put someone on the defensive. If you are trying to express your thoughts, beliefs or opinions, then own them by using the 'I' word rather than 'we', as this will have an impact on the other person in that they will hear and learn about what you think, feel and believe. And if you don't understand, then ask for clarification and don't assume, because you could be wrong.
In truth, none of this is easy. It takes practice and you won't always succeed. But by beginning in this way, you will begin to be heard and understood. It's easy to read this and think I'll give it a go, but it's always much more difficult when you are in the thick of an argument or when tension is high. It takes practice. Even if you manage to change just one way that you handle a difficult situation the next time you are confronted, then you have begun the process of being heard and understood.
References: Albright, C (2002) Ten Tips for Managing Conflict, Tension and Anger. Source: Internet Mental Health Resources. Maxwell, J.D (2002) Handling Arguments Effectively. Source: Internet Real World University. Martin, J. (2002) Leading by Listening. Source: Internet Real World University Pawlowski, R (2002) Understanding Communication. Source: Internet Real World University.
Acknowledgement: "Carers News", the newsletter of Carers NSW Inc February 2002. Reprinted: "Gateway", AHDA (NSW), September/October 2002.
An important aspect of using medicines safely and wisely is knowing the names of the medicines you take. It can help you keep track of which medicines to take, and when to take them. It can also be very important if you are seeing more than one doctor or find yourself in hospital unexpectedly. You can then tell the new doctor what you are taking to avoid being given a medicine that interacts badly with one you are taking already.
Being well informed about the names of your prescription medicines can help you avoid taking two doses of the same medicine by mistake. Unfortunately, this happens - sometimes with serious consequences. Typically, what happens is that while in hospital a person is given a different brand of one of their regular medicines. When they come out of hospital they do not realise that the medicine they have been given to take home is a different brand of the one they were taking previously. So, they do not realise they should take only the new brand, or only the previous brand - but not both!
There are two keys to understanding the names of medicines and avoiding situations like the one above. First, it is important to understand the difference between the generic and brand names of a medicine. Second, be aware that many medicines are sold as different brands by different manufacturers.
For example, there is an arthritis medicine called diclofenac, which comes in 50 mg tablets. Its generic (or approved) name is diclofenac. However, it is more familiar to most people as Voltaren 50, which is the brand (or trade) name given to it by the manufacturer Novartis.
The generic name of a medicine appears immediately below the brand name of the medicine's packaging and on the pharmacist's label.
Diclofenac 50 mg tablets are also made and sold by several other manufacturers under brand names such as Fenac, Diclohexal, Dinac, Chem mart Diclofenac and GenRx Diclofenac. These other brand names versions are often referred to as generic brands. They are available only for medicines that are no longer under patent.
When a new medicine is developed the company patents it. Until the patent expires no other company can make the medicine. But when the patent expires other companies can make copies of the medicine under their own brand names. Patents for medicines last for 20-25 years from the date the patent was submitted.
An example of a medicine that is still under patent is the arthritis medicine, celecoxib, which is made and sold by Pharmacia under the brand name of Celebrex. There are no other brands of celecoxib on the market.
You may have been offered a generic brand of your medicine by your pharmacist as it usually costs you less than the original or premium brand. Using the example of Voltaren again, if you are dispensed Voltaren 50 you will be charged a brand premium of $2 on top of the normal price. But, if the pharmacist offers you a less expensive generic brand such as Fenac you will not have to pay the $2 brand premium. Therefore, a person on a concession card would pay $5.60 for Voltaren 50 and $3.60 for Fenac. Others would pay around $16 for Voltaren 50 and $14 for Fenac.
Generic brands are copies of the original brand and are identical in dosage, safety, strength, how it is taken, quality, performance and intended use. They have the same amount of active ingredients, work in the same way in the body, and have the same risks and benefits as the original brand product. However, the shape, colour and non-active ingredients may differ from the original brand product.
Your pharmacist can only substitute a generic brand for the premium brand written on the prescription if you agree. Some people prefer to check with their doctor before agreeing.
If you are taking several medicines long term, it may be wise to stick to one brand of each medicine - either the premium brand or a generic brand - to minimize the chances of making mistakes.
If your doctor has marked the prescription 'Brand substitution not permitted' the pharmacist can give you only the brand written on the prescription.
For more information about the generic and brand names of your medicines talk to your pharmacist or doctor.
Have you ever wondered how the Government decides which medicines are approved for use in Australia, or why it can take a long time for a new medicine to be available here, or why some medicines are available on a normal prescription and others not? If you answered yes to any of these questions you are not alone. Australia's complex medicines' regulation system means that very few Australians know the answers to these questions.
Part of the difficulty lies in the fact that Australia has two completely separate processes for approving prescription medicines. One process decides which medicines can be sold in Australia and the other process decides which medicines will be listed on the Pharmaceutical Benefits Scheme (PBS).
Hopefully, this overview will unravel some of the intricacies of the two processes for you. However, please note that the information refers only to prescription medicines prescribed by doctors in the community. It does not refer to hospital-only, over-the-counter or complementary medicines.
Marketing approval process
As people living in an affluent and developed country we expect our Government to ensure that the medicines we use are safe and reliable. All medicines sold in Australia are evaluated before the manufacturer is allowed to sell them. The body responsible for evaluating prescription medicines is the Therapeutic Goods Administration (TGA), which is part of the Federal Department of Health and Ageing.
The Therapeutic Goods Administration assesses a medicine's safety, effectiveness and quality by weighing up the risks and benefits of using it. The evaluation of the risks and benefits considers the medicine's strength, side effects, toxicity, likelihood of harm with prolonged use, and the seriousness of the medical condition for which it will be used. This approach allows dangerous but potentially life-saving medicines to be approved for use in serious conditions such as cancer because the risks of using the medicine are justified by the potential benefits. Conversely, it ensures that safety is a prime concern when evaluating medicines used for less serious and long-term conditions.
When the Therapeutic Goods Administration has completed its evaluation, the application and the evaluation are reviewed by an independent committee known as the Australian Drug Evaluation Committee (ADEC). Most of the committee's members are eminent specialist doctors but a few are experts in other fields such as toxicology.
If approved the medicine is listed on the Australian Register of Therapeutic Goods. It can then be sold by the manufacturer for use by Australian Consumers.
PBS listing process
The process described above only allows a prescription medicine to be sold in Australia. It does not attempt to make it available to consumers at an affordable price. That is the purpose of the process described below.
The Pharmaceutical Benefits Scheme (PBS) is the Federal Government's scheme for ensuring that all Australians have access to necessary prescription medicines at an affordable price. The scheme, which was set up in 1948, subsidises the cost of most prescription medicines sold in Australia. As of 1 May 2002 the scheme subsidized the cost of 593 different medicines, which were available in 1461 strengths and forms (eg tablets, capsules, injections, ointments, etc).
Making a prescription medicine available on the PBS involves two stages. First, deciding if the medicine should be listed on the PBS, Second, determining the price the Government will pay the manufacturer for it.
The Pharmaceutical Benefits Advisory Committee (PBAC) is responsible for recommending whether or not a prescription medicine should be listed on the PBS. When assessing an application it considers the cost, effectiveness and safety of the medicine compared to other treatments available for the medical condition for which the medicine is intended, including any non-drug treatments.
The Pharmaceutical Benefits Advisory Committee also recommends the quantity of the medicine allowable on a prescription and the number of repeats allowable. It may also recommend restrictions to the use of the medicine under the PBS if it feels such restrictions will enhance the safe and wise use of the medicine and limit the cost to the Government.
For example, the osteoporosis medicine alendronate is available under the PBS only if a person has had an X-ray that shows a fracture caused by their osteoporosis.
When the Pharmaceutical Benefits Advisory Committee recommends that a prescription medicine be listed on the PBS it passes on its evaluation to the Pharmaceutical Benefits Pricing Authority (PBPA). This authority is responsible for determining the price the Government should pay the manufacturer for the medicine.
When the pricing process is complete both sets of recommendations go to the Minister of Health and Ageing for a final decision. On approval the medicine is listed on the PBS and is available for $3.60 to people on a concession card and a maximum of $22.40 to others. Each time the medicine is dispensed the Government pays the difference between what the consumer pays and the price agreed with the manufacturer, plus an amount to the pharmacist for dispensing it.
Australia's drug regulation system is recognised as being one of the best in the world. However, it does have a few frustrations and apparent anomalies for consumers. The time needed to complete the two processes can mean a long wait for people wanting to use a new medicine that is available overseas. And, as not all medicines make it through the two processes, a medicine may be approved for use in Australia but not approved for listing on the PBS. So, it may be available only to consumers who can afford to pay the price charged by the manufacturer.
Acknowledgement: "Medicines Talk" - Information for Consumers and Consumer Organisations, Newsletter of the PHARM Consumer Sub-Committee - No. 3 - August 2002.
It was obvious to everyone except Michael that the time had come for him to cease driving. It was reinforced to me one Sunday when we almost ended up on the kerb when Mike was moving into the left lane. He also began to take a long time to check that it was safe to drive across roundabouts, and so often, as he was approaching an intersection where he intended to turn right he would slow down to 30k a good l00m before the intersection. I thank the patience of the drivers behind us and the fact that they never tooted at us.
Of course Mike didn't want to stop driving. It was his independence; his opportunity to fill in time and drive somewhere and of course giving up driving was another reinforcement of the progress of Huntington's Disease.
We both knew this day was coming. We had talked about it in the past but it was always 'when you give up driving&' somewhere in the future. The future is NOW.
So the arguments started - "I'm fine driving" "No you're not, someone will get hurt". This went on for a couple of months. I would come home from work and find the car (and Mike) missing. At one point I thought, "let him go, it's easier just to ignore the issue" but the thought of an accident or worse was too strong to let the issue lie.
I began by asking what his plans were the following day and being ready in the car at the time he wanted to drive. I found working part-time I was able to juggle my hours to suit both Mike's and my own needs. The first few weeks Mike would say "I'm alright, I can drive" and I would respond "No you are not alright to drive, it is time to stop, that's why I'm here". It was hard going for the first few weeks, he would not accept the reality and he did not want me to be his driver. We continued like this for a few more weeks.
After two months I became aware that Mike wasn't arguing any more. He would get into the car and let me drive. This was a relief. I did reinforce the fact by saying how awful it would have been if he had continued to drive and a child had been injured or killed; he agreed with this. I also told him of some of his wobbly driving moments, which he was not aware of. He found it quite incredulous that over the past two years there were occasions when we were nervously gripping the seat as he did a very shaky lane change, drove at 30k in a built up area and other instances where his driving was 'dodgy' for a few seconds.
It is 18 months since Mike gave up driving. Once last year he did take the car for a short trip but that hasn't happened since and he lets me know when he wants to be driven somewhere the following day.
From my perspective, it is such a relief that this issue has been completed. Whenever he used to get into the car I would be nervous until he returned. I don't mind being the taxi driver and it is extra time to enjoy together!!
I've learnt a few things which assisted me in coping with living with my partner who had HD.
I wanted to share with you how I coped with his inability to give up driving. The most cruel thing for an ex-racing driver is to be told you are no longer legal on the road, and that you must give up your licence.
My partner only really broke down once with terrifying grief over HD: it was the day the above happened.
He had crashed our car and the insurers told him that he had to get a doctor's opinion on his ability to drive. Our neurologist judged his chorea as marginal for driving and recommended he stop. We sought a second opinion and this neurologist agreed with the first but recommended that to really prove it he should take a test.
The deterioration of his condition meant that my partner did not recognise the extent of his chorea and he was fixated on the fact that his driving was up to scratch. Family and friends waited in trepidation for the test results.
For me, there was relief that I had not had to make the decision and that he would now have to accept what many had been concerned about. Two weeks passed where he passively endured being a passenger, then one morning he demanded the keys. The high level of inflexibility and stubbornness was at its greatest. He would not listen to reason and the logic was ignored. He had to drive. I couldn't stop him, neither could my friends.
His independence was compromised - his full belief in his ability to drive did not falter. We argued all the time. I got angry; distressed, tried all tactics; he kept driving.
He would drive 50km back and forth to work. I did not want to go to the police. When I tried to talk to him I was the one in the wrong. Then one day he was stopped by the police before he got into the car. They had observed him swaying when he entered the car. They kept the keys and I had to go and pick him and the car up. He was calmly taking in a movie and was not phased at all by the episode.
He then seemed to lose the fight and gave up driving long distances. He still drove to the bus stop and I rang friends who would offer to drive him. When I had done this before he had ignored it. It could have been so much worse.
In the end we purchased a 4-wheel mobility scooter. That allowed him to have his independence and helped greatly.
Acknowledgement: "Huntington's News", Huntington's Disease Associations of New Zealand, Issue 77, June 2002. Reprinted: "Gateway", AHDA (NSW), Sept/October 2002.
Melbourne Cup Calcutta - 4th November
Rotary Christmas Hamper Raffle - Tickets in this raffle are available from the office. Closing date is the 16th December, 2002.
Rotary Christmas Cakes & Puddings are on sale at the HD Centre. To place an order ring the office - the goods will be available for collection a few days after your order is received.
Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors:
Gold Nugget Raffle - We extend our sincere thanks to Petra Stride for a tremendous effort in raising over $1000.00 in this raffle. Tickets were sold in the St. George area and the winner was P. O'Toole, ticket No. 62. Peter and Appelien Stride donated the gold nugget valued between $350 - $600. This raffle has been a great boost to our fundraising - thank you to the Stride family for their generosity.
January 21, 2003 Management Committee Meeting - 6 pm at HD Centre, Annerley
February 18,2003 Management Committee Meeting 6 pm at HD Centre, Annerley
March 8, 2003 Movie Night
At the Annual General Meeting held on the 24th September, the Management Committee for the forthcoming year was elected. Our current Committee is a follows:
President Mr. Gerry Doyle
Bundaberg Family Support Group - Office Bearers
Townsville Family Support Group - Office Bearers
Wishing our readers peace and joy at Christmas and throughout the New Year.
We are currently updating our mailing list with particular emphasis on health professionals who work with families affected by HD. We feel it is important that these professionals receive regular Newsletters thereby keeping abreast of current research and the support offered by the Association. If you would like your GP to receive the Association Newsletter, please contact us with the relevant details.
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