Newsletter September 2006
In this Issue
Since the last Newsletter we have been extremely busy in all areas and despite the usual winter illnesses our wonderful staff has maintained the high standard of support for Huntington's families.
The highlights of the last three months included the Bridge to Brisbane Run which again was well supported through the Sherwood Forest runners and their sponsors. This has become one of our major money earners and next year will be even better.
Annual General Meeting: The Annual General Meeting was held at Easts Leagues Club on the 12th September when we also celebrated our 30th Anniversary. We were honoured by the large attendance and we were privileged to welcome Professor Ed Chiu who has over 30 years experience providing clinical expertise to clients and was a founding member of the Victorian Association. His speech was not only informative and laden with years of wisdom, but also very entertaining.
Mr Cliff Farmer, founder and Committee member of the Association, presented an excellent overview of the Queensland Association and traced our development since inception 30 years ago.
My sincere thanks to all who made the AGM for 2006 and the 30th Anniversary Celebrations such a special occasion.
I would also like to express my appreciation to all Committee members who have worked so hard again this year. Alison Hopgood and Iris Simpson have both resigned from the Management Committee and I extend our heartfelt thanks to them for their contribution. The Management Committee for 2006/2007 is:
President: Ray Bellert
As you will realise our numbers are below a satisfactory level and we need more members on the Committee.
For anyone interested in joining the Committee, we meet monthly on the third Tuesday. Meetings commence at 6 pm and depending on the amount of business to be considered, the meeting usually closes at around 8 pm.
Membership: Thank you to those who have paid their membership and for the many generous donations accompanying renewals. If you have not already done so, could you please renew your membership at your earliest convenience.
In closing, everyone should be proud of what we have achieved together in the last 30 years. We have come a long way from the humble beginnings to where we are today. However, we still have a long way to go but with your help the road ahead will be even better.
Ray Bellert, President
Thank you. Earlier this year members of AHDA QLD were asked to participate in a research project looking at the Economic Impact of HD on Well-Being. We would like to take this opportunity to thank everyone who participated; your contribution was greatly valued and appreciated. We have now finished collecting questionnaires, with a total of 417 patients and 330 carers returning a completed questionnaire. Analysis of the information that was provided in these questionnaires is now being conducted, and a report will be made available as soon as this process has been completed. If you have any further questions or comments regarding this project, please note that there is a new contact person at Deakin University. Elodie O'Connor can be contacted by phone on (03)9251 7258 or via email at [email protected]
Unfortunately, we are presently short staffed due to Julie Morrow (Welfare Officer) requiring extended leave following an operation on her vocal cord. Julie is very well, but unfortunately has had delays in regaining her full speaking voice. We particularly apologise to those clients living on the north side of Brisbane, the north coast and clients in Cairns. Until Julie is able to return to her position, please contact Gwen for any assistance.
Helen Fox has completed her first regional trip to Bundaberg - it's always great when you can finally put faces to names. Thank you for welcoming her into your homes and lives.
Continuing to improve services to our regional clients is part of our Strategic Plan. During our future visits to regional areas, we will be taking more time to explore the needs of clients, carers and family members. Initially, we are hoping to develop Individual Support Plans with interested clients, to improve our ability to respond to your needs.
All Welfare staff will be attending the HD Conference in Melbourne from the 15th-17th November. The advertised program promises a very interesting and educational experience for all who attend. Should any of our readers be interested in attending the Conference, please contact the HD Office for the program details and registration form.
The Conference provides a unique opportunity for staff education and is our major staff training and development event for the year. Likewise, for interested family members and other professionals, my experience in the past has been that invited speakers attempt to simplify their presentation, allowing for a non scientific audience.
Huntington's Disease Awareness Day for 2007 will be held on the 30th March. We have already begun planning for this event. If anyone is interested in getting involved, or simply has some ideas, then please call Barbara.
One of the key initiatives of the Association this year has been the Strategic Planning Process. This has provided us with a future direction to work towards. We are in the final process of completing the 1 year Operational Plan - this is a tool to help break our work into manageable portions while working towards our longer term goals. Please call Barbara if you are interested in a copy of the operational plan.
Carers Queensland is the peak body for carers in Queensland. As a non profit organisation, they are dedicated to advancing the recognition of the role of the unpaid family carer. To this end, Carers Queensland endeavours to respond to the needs of carers through the provision of information, facilitation of support groups, advocacy, counselling and referral services.
Their contact details are outlined below.
Gwen Pratten, Welfare Coordinator
Do you need practical assistance or information or just someone to talk to?
Is there a young carer in your family needing support?
Ring Carers Queensland on
Hi everyone, it is that time of the year again when we ask everyone to come together for our Annual General Meeting and give you all the opportunity to either put yourself or someone else forward for a position on the committee and then to vote on who you think will be the best person to do the job for the next twelve months.
I thank you all for your vote last year when we saw Vic leaving town and I was voted in as Chairperson along with Janelle as Treasurer for the first time, along with other committee members, Jean, Joyce, Tommy and Bill. I must say it has been a pleasure to work with them all and I thank them for the support they have given me this past year.
We have continued with our outings each month to different venues around town. Although it would be great to see a few more faces come along to these outings I feel that those who do come have enjoyed each one. We have tried a few new places during the year and are always on the lookout for new venues, so if there is somewhere you think would be good, please let one of the committee know and we can try to work it into our calendar. You may even like to offer your home as a gathering place if you find it hard to get out, but would like to be part of the group.
The Awareness Morning Tea this year was a great success. We were down on numbers from last year, but the Guest Speaker and MC were both stimulating and educational. Once again the food was laid on and enjoyed by all. Well done to everyone who helped to make this event a huge success, and I hear there is some planning started for next year, so look forward to seeing you there. This is our only fundraiser we have in the North. We do have some members who help sell tickets for the Barrier Reef Lions Club, and in return they give a donation each year. If anyone is interested in helping with this please let us know.
Bill and I went to Brisbane to represent this area in the Strategic Planning Meeting. The Association has been going for 30 years and is now in the process of working out how to move forward, and ways of implementing these decisions over the next 3 years and beyond.
We also had our first social evening, and although the numbers could have been better, all who came along had a great evening. This was held at the Oonoonba Hall with the same band we had for the Awareness Morning Tea.
We have had one visit from Gwen this year, so far. We had morning tea at the Strand, it was one of those wet overcast days and so our numbers were down from other years. We are looking forward to seeing Gwen again later in the year.
As I have already said the Association is 30 years old this year, they are having a dinner and the AGM to celebrate in Brisbane to which they have extended an invitation to us here in the north to attend, so if anyone will be in Brisbane on 12 September and would like to go please let me know and I will pass on the information about the event and let Brisbane know you will be coming.
Thanks once again for allowing me to work with you this past year, and I look forward to seeing you at the AGM on 7 September 2006 at the House of Prayer, 17 Thomas Street, Pimlico.
PS: It is now time to renew membership for the Association, so if you have not got a renewal form or would like to become members for the first time just ask us on the night and we will have forms available for you to fill in and send to Brisbane.
Sue Bourne, Chairperson
Exciting news from the Research Front in Canada and USA
Researchers at the Child and Family Research Institute's Centre for Molecular Medicine and Therapeutics (CMMT) have provided ground-breaking evidence for a cure for Huntington disease in a mouse offering hope that this disease can be relieved in humans.
Published today in Cell journal, Dr. Michael Hayden and colleagues discovered that by preventing the cleavage of the mutant huntingtin protein responsible for Huntington disease (HD) in a mouse model, the degenerative systems underlying the illness do not appear and the mouse displays normal brain function. This is the first time that a cure for HD in mice has been successfully achieved.
"Ten years ago, we discovered that huntingtin is cleaved by 'molecular scissors' which led to the hypothesis that cleavage of huntingtin may play a key role in causing Huntington disease" said Dr. Michael Hayden, Director and Senior Scientist at the University of British Columbia's Centre for Molecular Medicine and Therapeutics.
Now a decade later, this hypothesis has resulted in a landmark discovery. "This is a monumental effort that provides the most compelling evidence of this hypothesis to date", said Dr. Marion DiFiglia, Professor in Neurology, Massachusetts General Hospital, Harvard Medical School and one of the world's leading experts on Huntington disease. "Dr Hayden and his team have shown in convincing fashion that many of the changes seen in HD patients can be erased in HD mice simply by engineering a mutation into the disease gene that prevents the protein from getting cleaved at a specific site".
To explore the role of cleavage, Dr. Hayden's team established an animal model of HD that replicated the key disease features seen in patients. A unique aspect of this particular animal model is that it embodied the human HD gene in exactly the same way seen in patients. This replication allowed researchers to examine the progression of HD symptoms including the inevitable cleavage of the mutant huntingtin protein. In the study, researchers confirmed that the deadly cleavage is caused by a key enzyme called caspase-6. By blocking the action of this target, they showed that the mouse did not develop any symptoms of Huntington disease.
Hayden's team is now trying to test this model of prevention in a mouse using drug inhibitors and then ultimately in humans. "Our findings are important because they tell us exactly what we need to do next", said Dr. Rona Graham, Post Doctoral Fellow at the CMMT and lead author in the study.
This work is also pivotal for the individuals and families affected by Huntington disease. "Patients of this disease should know that this is a research milestone for all and that this work brings the field closer to finding effective treatment for a devastating disorder", said Dr. DiFiglia.
This research was funded by Canadian Institutes of Health Research, Hereditary Disease Foundation, Huntington Disease Society of America, Michael Smith Foundation for Health Research, High Q Foundation, Merck Frosst, Child and Family Research Institute of BC.
Vancouver, B.C. - June 16, 2006: Alexandra Howard, Communications
Professor David Turner Responds
The Association asked Professor David Turner from Flinders University's Department of Haemathology and Genetic Pathology to comment on Dr Michael Hayden's Caspase 6 research. He sent us this response :
The paper from Michael Hayden's lab is an excellent piece of work which makes a very strong case for the caspase 6 cleavage fragment of the abnormal huntingtin protein as being a key factor in the cascade of events that leads to the characteristic neurodegeneration seen in HD. It is interesting that in so far as what was done, it was specifically the loss of caspase 6 fragment and not the loss of caspase 3 fragments that appear to be important in protecting against neurodegereration. Genetically engineered loss of the caspase 6 site in the animal model resulted in a much slower rate of production of nuclear inclusions and no observable ' symptoms' in the 'transgenic' mice.
So this is another important piece of the puzzle - particularly as it extends previous in vitro work on cytotoxicity to an in vivo situation.
Nonetheless it is an important observation and will certainly stimulate work on studying the effects of caspase 6 inhibition further.
Acknowledgement : AHDA (NSW), 'Gateway' Volume 9 No 3, Winter/Spring 2006.
Summary of Queensland Transport changes to reporting of medical conditions.
From 1st March 2006, licence holders are now required by law to report their medical condition to Queensland Transport if they:
- have not previously told QT about a permanent or long term medical condition that is likely to adversely affect their ability to drive safely,
How to notify Queensland Transport.
Discuss your situation with your Doctor. A medical certificate F3712 can be completed by your Doctor detailing your condition and whether you are medically fit to continue driving or need some restrictions to your licence. The driver must take this completed form to a Queensland Transport Customer Service Centre.
How can Parkinson's disease impact on my driving?
Research has demonstrated that some drivers with Parkinson's disease as well as other conditions may have difficulty in the following areas:
" keeping to their lane, changing lanes and merging
Many drivers become aware of these limitations and adjust their driving to compensate.
Examples of compensatory measures include:
" avoiding complex and unpredictable situations such as peak traffic times and busy intersections
Our ability to use these compensatory measures to keep our driving safe depends very much on our ability to notice our declining abilities. Most drivers (of all ages and abilities) think that they are much safer than the average driver, and as our abilities decline, we are less likely to be aware of how much they are affecting our driving.
How do I know when I might be unsafe on the road?
There are some indications that alert us to the fact that we may not be driving as safely as we could. These include:
" feeling harried and anxious when driving
How can my driving ability be assessed?
" Your Doctor is the first person to discuss your driving ability with. They can refer you to an occupational therapist that specializes in driving assessment for a full assessment of your driving skills.
How can I keep driving safely for longer?
(Safe Driving Practices and Self Regulation)
" Update your knowledge of road rules, especially roundabouts and right of way at intersections.
Where to after giving up driving?
All drivers with and without medical conditions need to plan for their eventual retirement from driving. Whilst it is important for us to maintain our independence and mobility for as long as possible, we must also consider our safety and that of other road users. The decision to stop driving is much easier if we plan for it and make that decision ourselves.
Planning for transport alternatives involves considering where we live, family and social networks, accessibility to public transport, shops, medical facilities and community centres. Well before the need to cease driving arises we should investigate public transport options, concessions, timetables and route information versus the cost of running a vehicle. Look into options like ordering goods by phone from local shops and having them delivered. Some local councils, community centres and clubs provide community transport and community volunteer transport may be available in your area. Planning for driving cessation will enable drivers to make the transition gradually and smoothly whilst ensuring lifestyle choices are optimized.
VicRoads (4th Edition). The Victorian Older Drivers' Handbook. Publication No. : 00562/4
Acknowledgement: Parkinson's Qld Quarterly Spring 2006
This Article is Part Three of Three, relating to HD and Driving
The most effective approach to limit or stop driving involves progressive steps and a combination of strategies that fit the family's circumstances, resources and relationships. For people in the early stages of Huntington's Disease (HD), driving is best reduced over time rather than all at once. Families can help by finding ways to let others drive or reduce the need to drive. Caregivers and families should be sure to address the important social needs of the person with HD that were met through driving. When possible, include the person with HD when planning ahead to limit driving.
Sometimes people with HD begin limiting where and when they drive. The following signs indicate that a person with HD is modifying his or her driving behaviour:
Let Others Do the Driving
Some people with HD are better able to adjust to not driving if others gradually assume more of the driving responsibilities.
This option may work for people with HD who live in urban areas and are already accustomed to using these methods.
Taxis can be a cost-effective alternative, especially when fares are compared to the expense of gas, insurance, taxes, repairs and car payments. Total mobility vouchers (which give a reduction in taxi fares for those unable to catch a bus) may be available in your area. Ask you HD contact person where you can get them and what the requirements are. A disability allowance may be available to help with transport costs.
There is plenty of information available in your community about getting around without a car. Good sources of information are:
Friends and Relatives
Friends, neighbours, relatives or caregivers can offer to drive the person with HD to appointments or other social events. Other family members will be more likely to assist with the driving if caregivers make specific requests and schedule appointments at times that work for those requested to help.
Co-Piloting is Not the Answer
Some caregivers act as co-pilots to keep a person with HD driving longer. The co-pilot gives directions and instructions on how to drive. By chance, this strategy may work for a limited time. But in hazardous situations, there is rarely time for the passenger to foresee the danger and give instructions, and for the driver to respond quickly enough to avoid the accident.
Reduce the Need to Drive
Resolving the driving issue involves not only substituting other drivers or modes of transportation, but also addressing the reasons people want to go places. Caregivers can look for ways that others can help meet the physical needs of the person with HD, such as:
" Arrange to have prescription medicines, groceries and meals delivered, reducing the need to go shopping.
Balancing the Social Needs
While caregivers consider ways to reduce the need to drive, it's also important to remember the social benefits the person with HD derives from interacting with others. As one person reflected: "When I went to the bank or drug store, I would stop at the local bakery for some pastries. Sometimes it would take most of the morning because I could take my time and chat with different friends along the way." If caregivers consider the social needs that were met through driving, the transition to not driving will be more successful.
The following questions can help families and caregivers identify the social needs and develop ways to address them to ease the transition to not driving:
" Where does the person with HD go? When and how often (e.g., grocery store, hairdresser, appointments, library or religious activities)?
Early Planning to Limit Driving
When possible, include the person with HD in the planning process. People are better able to respond to appeals to safety during the early stages of HD.
A simple written agreement can be drafted which nominates an individual the person with HD wishes to be the one to tell them when driving should cease. Example:
I trust my family will take the necessary steps to prohibit my driving in order to ensure my safety or the safety of others while protecting my dignity. Signed &&&&&& Date &&&&&
This informal agreement does not restrict driving at the moment of signing, but designates a responsible person to take necessary steps to ensure driving safety in the future. It respects the individual's dignity by focusing on the disease, not the individual, as the reason for driving restrictions and cessation.
Take the Keys as a Last Resort
Taking away the car keys or a driver's licence, or selling or disabling the car should be a last resort. To the family member in the early stages of the disease, such actions seem extreme, disrespectful and punitive. And people with mild HD can ignore, undo or manoeuvre around those strategies by driving without a license, enabling the disabled car or buying a new car to replace the one that was sold.
Once a person has stopped driving, caregivers must decide whether taking away the keys, license and car will help the person adjust or make it more difficult. Some caregivers remove the keys or the car from sight to avoid having the driving issue resurface. Others allow people to keep their keys, car and license to help them maintain a sense of dignity. Some people with HD stop driving but carry their license as photo identification.
Advice from Caregivers