Vancouver, B.C. - June 16, 2006: Alexandra Howard, Communications
Source: Centre for Molecular Medicine and Therapeutics (CMMT)
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.
However as is often the case with these new insights there is not an immediate way (obvious to me at least) in which this new information can be translated into therapeutic effect - and Hayden's group make no claim in this regards, of course.
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.
The following article relating to persons affected by Parkinson's Disease and their ability to drive a motor vehicle highlights similar issues confronting clients with HD.
Parkinson's Disease and Driving
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,
- have developed a permanent or long term medical condition that adversely affects their ability to drive safely, or
- have an adverse change to their existing permanent or long term medical condition.
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
" parking and reversing
" judging gaps, speed and distances, particularly at intersections
" finding their way in unfamiliar road and traffic situations
" reacting quickly to unexpected hazards.
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
" allowing a greater following distance behind vehicles to allow time to react
" planning routes well in advance to avoid difficult turns across traffic and using only familiar routes
" using other forms of transport for unfamiliar or difficult routes (eg: bus/train/taxi)
" driving in daylight hours only
" avoiding distractions in the vehicle (eg: radio, children and pets)
" avoiding bad weather conditions
" deciding not to drive when feeling tired or unwell.
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
" near misses
" thinking "Where did that car/pedestrian come from?"
" a recent number of dents to our vehicle that we don't recall incurring
" frequent acts of frustration by other drivers aimed at us such a tooting or aggressive behaviour
" traffic backing up behind our vehicle because we have slowed down to cope with the simultaneous demands of driving
" comments by family, passengers or neighbours about our driving ability.
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.
" Occupational Therapy Driving Assessment involves off-road (clinic) and on-road testing to assess the impact of your medical condition on driving ability. If you successfully complete the assessment you may resume driving unconditionally, or with modifications to your car and/or some restrictions to your driving. If your driving was unsafe, you may be asked to undertake driving remediation lessons or cease driving due to medical reasons.
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.
" Have regular medical and vision checks and know your own limits.
" Consider using the compensatory measures listed earlier.
" Know what is around you. Regularly check your rear view and side mirrors and always check your blind spot before changing lanes and merging.
" Use intersections with lights and arrows to direct traffic.
" Maintain a good following distance between your car and the car in front. A two second gap is recommended and should be extended to four seconds in bad weather, night or poor light, when towing and when driving in unfamiliar situations.
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.
Austroads Inc. (2003). Assessing fitness to drive for commercial and private vehicle drivers. Medical standards for licensing and clinical management guidelines. Sydney: Austroads Incorporated.
VicRoads (4th Edition). The Victorian Older Drivers' Handbook. Publication No. : 00562/4
Wood, J.M., Worringham, C., Kerr, G., Mallon K., & Silburn, P. (2005). Quantitative assessment of driving performance in Parkinson's disease. Journal of Neurology, Neurosurgery and Psychiatry, 76, 176-180.
Acknowledgement: Parkinson's Qld Quarterly Spring 2006
Easing the Transition from Driver to Passenger
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:
" Driving shorter distances,
" Driving on familiar roads.
" Avoid driving at night, in heavy traffic, on heavily travelled roads or during bad weather.
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:
" Local and Regional Council Offices
" Heartland Services centres in rural areas
" Age concern
" Citizens Advice Bureaux
" Community service providers
" Community Centres
" Doctor's surgeries
" Libraries and recreation centres
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.
" Have hairdressers make home visits.
" Schedule people to visit regularly, either as volunteers or for pay.
" Arrange for friends to take the person on errands or to social or religious events.
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)?
" What services can be brought to the home (e.g., groceries delivered or in-home hairdresser)?
" Who can offer to provide transportation (e.g., neighbours running errands, relatives for doctors' appointments or a friend going to religious services)?
" Can visits from family or friends include outings (e.g., eating out or going to a park)?
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 have discussed with my family my desire to drive as long as it is safe for me to do so. When it is not reasonable for me to drive, I desire &&&& (person's name) to tell me I can no longer drive.
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.
The agreement is not a legal contract, but is a document to help plan for the future. Like plans made for medical and financial decisions, the form allows families to discuss matters and agree on a course of action before a crisis and while the loved one is capable of making decisions. The document does have limitations. Not everyone with HD will grant advance permission for someone to stop him or her from driving. The signed statement does not address when driving should stop, and it does not ensure that the person with HD will comply once the disease progresses. However, it is a tool that family caregivers can use.
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.
Reprinted: Huntington's News, HD Associations of New Zealand, Issn 1174 9229, Issue 94, September 2006
Advice from Caregivers
Four basic principles that can help caregivers and people with HD manage driving and transportation decisions.
1. There is no easy answer: no right way.
Caregivers need to consider the personality and the abilities of the person with HD when making decisions over the course of the disease. They must take into account the roles and relationships within the family that affect decisions and their outcomes. Each family must select strategies that will work within its unique situation.
2. Begin discussions and planning early and involve the person with HD.
Ideally, a person with HD should make the transition from driver to passenger over a period of time. The written agreement can serve as the starting point for meaningful discussions about driving. Open, early and continual communication can help the person with HD and the family to agree on a course of action before a crisis occurs.
3. Base decisions on driving behaviour observed over a period of time.
Regular monitoring and assessing of driving helps caregivers respond appropriately. A diagnosis alone may not be sufficient reason for a person to stop driving. However, when it clearly is no longer safe for a person to drive, caregivers must not delay in taking necessary steps. In hindsight, many caregivers regret permitting a loved one to drive longer than it was safe. The result was prolonged anxiety for caregivers and placing others at risk.
4. Get support when making and implementing decisions about driving.
It is not healthy for the caregiver, the person with HD or the family as whole, when one person shoulders all of the responsibility for making and implementing decisions about driving and HD. Caregivers can make reasonable requests of family members and those outside the family. Neighbours, friends and relatives can contribute by providing for the emotional, social and transportation needs of the person with HD.
G.Ps, specialists, lawyers, care managers, financial planners and your HD support worker can offer information, guidance and perspective. People in authority outside the family can reinforce the family's efforts to ensure the safety and dignity of a person with HD.
Reprinted: Huntington's News, HD Assocations of New Zealand, Issn 1174 9229, Issue 94, September 2006.
Volunteers' Cricket Day
8th December, 2006
Volunteering Queensland in collaboration with Queensland Cricket and Brisbane City Council annually hosts a Volunteer Cricket Day inviting volunteers throughout Queensland to attend a specified match. This year's match is a day-nighter between Queensland and Victoria. For more information on how to secure tickets, please refer to the enclosed flyer.
Garage Sale - 8th July, 2006 - $1100 was raised. Thanks to our very willing volunteers who contributed to this outcome. A big "thank you" to Anita, Ray, Betty and Dawn who did more than their share.
Sausage Sizzle - Bunnings Maroochydore Saturday 5th August 2006 - Our first Sausage Sizzle in the North Coast region was a very rewarding one. Don and Barb Gray popped up to Maroochydore to lend a hand and pass on their ideas in running a successful day. Volunteers - Sandra and Ian McDonald, Gavan Buckley, Robyn and Laurie Kerr, Carol Booker and Dagmar Ker very ably turned this fundraiser into a very successful event, so much so, they say they can do it alone next year. Thank you to all involved; your efforts were rewarded with an all time high for a Sausage Sizzle of $1500. Our name has already been registered with Bunnings, Maroochydore for 2007!
Bridge to Brisbane Run - 6th August, 2006 - Well it's all over for another year. We hope everyone had a great run and an enjoyable morning. Conditions were just about perfect, the sight of thousands going over the bridge magnificent and once again the pink shirts really stood out. It was a wonderful opportunity to raise awareness of Huntington's Disease in addition to the $8000.00 received through major sponsors and donations.
We would particularly like to thank Bill Palmer for keeping the ball rolling. As usual Bill put his heart into it and we have been rewarded with this amazing result. Thank you Bill. Thank you to Harvey World Travel for donation of prizes; the lucky winners were Allan Fox and Barbara Gray. Our sincere appreciation to the following major sponsors:
AI Interior Linings
J.W. Bell & Associates
Siganto & Stacey Pty Ltd
Not to forget the participants - 73 in total. Teams from the Sherwood Forest Runners, Chelmer Runners and AHDA (Q) joined forces to take up the challenge. There were some very good performances from the runners. Glenda's Gazelles bounded away and claimed Second Prize in the teams division. Congratulations! Teams are listed below:
Glenda's Gazelles - Glenda Banaghan; Terry Smith; Adam Morrison; Richard Flack; Steve Pager and Daryl Crook
Betty's Boomers - Betty Menzies; Bruce Smerdon; Margaret Berry; Russell Wilson, Marc Bryant; Evan Wham, Anne Cunningham, Rod Cunningham, Perry Richardson, David Boden
Donny's Dorpers - Don Beerling, Karen Ness, John Ness, Barry McGaffin, John Wishart, Rob Brown, Julie Waites, Neil Shuker, Byron Dixon
Hillhouse Hares - Robert Lamb, Ian McKeown, Michael Karzon, Lee Stapleton, Alex Griffith, Michael Van Baarle, Craig Spink, Ross Cameron
Barbara's Bunnies - Barbara Gray, Gary Crook, Elizabeth Crook, Brenna Byrne, Betty Glase, Les Saffy, Gwen Pratten, Charles McDonald
Chelmer Cheetahs - Will Siganto, Loretta Sargeant, Bill Palmer, Anthony Sachs, Thomas Palmer, Claire MacBean, Sally Wilson, Verity Gallagher, Allan Fox, Murray Willson
Karen's Kids - Karen Richardson, Elyse Richardson
Gemma's Gals - Gemma Holmes, Helen Clinton, Elvia Hanel, Anne Danaco, Tracey Milton
Michael's Meteors - Mick Reynolds, Jessica Boden, Zac Herps, Craig Hong, Amanda Campbell, Benjamin Pager, Ashley Pager, Zac Herps.
Thank you for your wonderful support.
Cookie Drive - Forms are enclosed. If readers in areas just outside of Brisbane (North Coast, South Coast areas and Toowoomba) are interested in purchasing cookies, we can hopefully coincide delivery with Christmas get-togethers when Welfare staff attend.
Sausage Sizzle - Capalaba - Sunday 10th December - This is a great opportunity to raise some funds at the end of the year. Anyone who is able to volunteer will be made very welcome.
Rotary Club of Acacia Ridge Christmas Hamper Raffle - Tickets will be available from the HD Office around late November, early December.
Community Assistance - We have received, and gratefully acknowledge major financial assistance from the following donors:
W. & M. Abraham
Allens Australia Pty Ltd
Cashflow Australia Pty Ltd
Centrepoint Finance Pty Ltd
Claymore Constructions Pty Ltd
R. & A. Cunningham
Don Beering Auto Repairs
R & P. Eley
L. & P. Few
K. & J. Hall
Hillhouse Burrough McKeown
Malones Business Advisors
Sherwood Forest Runners
J. & C. Stride
The ABS Partnership
W.J. & C. van Heel
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