Issue 38
UPBEAT
July 2017
The Newsletter for People with Early Onset Parkinson’s Understanding Parkinson’s by Belief in Education, Attitude and Treatment
UPBEAT Weekend 15-17 September Following on from our last very well attended UPBEAT weekend in Napier, we are excited to announce that registrations are now open for the 2017 National UPBEAT weekend in Hamilton.
people living with Parkinson’s. There will be world class speakers discussing a range of topics from the latest research findings to practical tips about what you can do to help yourself the most. There will also be a trip to the Hamilton Gardens.
The 2017 UPBEAT weekend will be held Friday 15 September to Sunday 17 September. Hosted by the Waikato branch, the event will be held at the convenient Airport Conference Centre in Hamilton.
Please return the enclosed registration form (PDF) to PO Box 11 067, Manners Street, Wellington, email your details to UPBEAT@parkinsons.org.nz or call 04 472-2796 by 25 August 2017.
If you haven’t been to an UPBEAT weekend before you should consider coming to this one. If you have been before, we would love to see you again.
Do you have topic to share? Member designed content will also be featured in the weekend. We are looking for people to give us expressions of interest of topics they can present on. Presentations can be on anything The UPBEAT weekend is open to people related to Parkinson’s. You might have found a diagnosed before the age of 60 who are currently great type of exercise that helps you or what to under 65 years of age. The cost is $140 person share your experience of an aspect of living with including accommodation or $70 per person Parkinson’s. Your partner might have suggestions without accommodation. Please contact us if on things they have found help them or the your financial situation would prevent you from person they care for. You may even want to do a attending as we may be able to help. For more presentation with another person. To let us know information email us UPBEAT@parkinsons.org.nz a topic you would like to present on, or for more information, please email This is a great opportunity to meet new people UPBEAT@parkinsons.org.nz who are also living with Parkinson’s, learn from each other, and find out more about managing this condition. In the feedback we have received form past weekends many people have said being around other people who ‘understood’ is a highlight of the weekend. Partners and family members are also encouraged to attend the weekend. One member told us, “It was also great for my wife to be able to talk to other partners who knew what she was experiencing.” As we go to print with this issue of the UPBEAT newsletter we are putting the finishing touches on the programme for the weekend. The focus will be on exercise and why it is so good for
2014 UPBEAT Weekend, Napier Photo credit: Bruce Jenkins
Please return your registration form by 25 August 2017 to PO Box 11 067, Manners Street, Wellington
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UPBEAT
July 2017
UPBEAT groups in your region UPBEAT is a special interest group for people with early-onset Parkinson's, their whanau/ families and friends. UPBEAT exists to provide people with early onset Parkinson’s and their whanau and friends a forum to communicate with other people and to share information, ideas and experiences. A number of our local divisions and branches have popular UPBEAT groups that are growing each month. In many UPBEAT groups partners are welcome to come along. The groups can be quite informal and are friendly and welcoming.
individual reactions to the condition, medications and how medications could affect them. Caregivers are equally new to the situation and have much they need to understand. “The image that we want to project of Nga Waka is that of a fun, vibrant, active and accessible social group bound together by a commonality that is Parkinson’s. Gordon says that the mantra or guiding principle of Nga Waka is: No one gets left behind.
Groups may explore the local area together, invite speakers, or socialise at different venues.
Nga Waka is deliberately targeted at people under the age of 65. Gordon points out that these people are more likely to be in employment, have children, Many UPBEAT groups try to reach as many people as and have household debt. possible by meeting in different towns and having a variety of guest speakers. Members can enjoy good Nga Waka aims to provide information and support food and company and interesting new places. to UPBEAT members. We will discuss Gordon’s proposal further at the UPBEAT weekend. Our aim with UPBEAT is that people living with Parkinson’s realise they are not alone. We want If you are interested in joining an UPBEAT group in people to leave each meeting feeling supported, your region please contact your local Community uplifted by the fellowship and empowered by what Educator or email UPBEAT@parkinsons.org.nz they have learned. UPBEAT is for you, so we want to know what information interests you. Please give us a call or email UPBEAT@parkinsons.org.nz to tell us your suggestions. Parkinson’s Auckland committee member Gordon McTavish encourages more participation in UPBEAT groups. Gordon suggests that people living with early onset Parkinson’s need Nga Waka, a vessel to take you through a life with Parkinson’s. Here Gordon shares his vision for people with early onset Parkinson’s: “Nga Waka is the vessel intended to benefit all stakeholders in the Parkinson’s community. At its heart is the proposition: How can we best help the individual and their family newly diagnosed with Parkinson’s. “We need to speak openly and honestly and
Photo: Parkinson’s Auckland committee member Gordon McTavish
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UPBEAT
July 2017
Parkinson’s and employment Will Parkinson’s affect my ability to work? For many people work is not just about making a living. Your work forms a big part of your life and can be fulfilling and enjoyable, as well as providing social interaction. For many younger people with Parkinson’s, their condition does not stop them working. However, at a later stage you may want to make some changes that will make working easier for you, or you may want to take a different approach to work. In the future you may feel you have to stop working or you may want to stop working.
Under the Human Rights Act, it is unlawful to discriminate on the grounds of disability in employment. If a person requires special services or facilities because of their condition, their employer may decline to provide them only if it is not reasonable to provide them. This means employers need to consider whether they can reasonably accommodate a person’s condition within their workplace before considering any other action.
Reasonable accommodations could include modifying your current job as appropriate, or Many people will be in full or part-time finding you a more suitable job within the employment when they are diagnosed and will want organisation (under your existing terms and to continue to work as long as possible. Your ability conditions of work). Your company cannot change to stay in work once diagnosed with Parkinson’s your contract without your agreement. depends on the type of work you do and how your symptoms affect you. It is very important that you Current legislation states that when dismissing an obtain information about continuing in your employee for problems related to persistent or employment and consider your options carefully prolonged illness, the employer must follow a before making any decisions. process that is fair to the employee and it will depend entirely on the circumstances. The law does You may need to evaluate your working future. Ask not require that an employer must hold open the yourself whether you can do your job safely, will it employment of a sick employee indefinitely. pose a risk to others, and will it worsen your However, as with other types of dismissal, the symptoms. Every case is individual. A good starting decision to terminate must be fair and reasonable, point is to talk with your employer and your that is, the employer should be able to justify their specialist or Community Educator. reason to dismiss this employee. If you are diagnosed with Parkinson’s, whether you have to tell your employer can depend on the circumstances of your case. Generally you would not be obliged to disclose this information unless you think it will impact on your ability to perform your work. However, your employer may need to know of a long-term condition to help them fulfil their health and safety obligations towards you as an employee. Am I protected? The Employment Relations Act 2000 requires employers and employees to deal with each other in good faith, which means dealing with each other honestly and fairly, and with open communication.
What will constitute a fair procedure will depend on the circumstances of the particular case, but an important part of this process is the need to communicate clearly with the employee who is ill and let them know a reasonable time in advance that their employment may be in jeopardy. If an employee is dismissed for illness-related problems and the reason or process followed for the dismissal is not fair and reasonable, the employee can challenge the dismissal by raising a personal grievance. For further information on your employment rights contact the Department of Labour (www.dol.govt.nz) or your union/employee representative.
UPBEAT is a special interest group of Parkinson’s New Zealand UPBEAT Mission Statement: To improve the quality of life of people with the early onset of Parkinson’s and their families by sharing information, experiences and strategies through interpersonal communication and support, until there is a cure. Parkinson’s New Zealand, P O Box 11 067, Manners Street, Wellington FREEPHONE 0800 4PD INFO email: UPBEAT@parkinsons.org.nz website: www.parkinsons.org.nz Facebook.com/parkinsonsnz Parkinson’s New Zealand Charity Registration Number: CC27373
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Outward Bound she had trained and got quite fit before going on the course. Although she found the physical tasks challenging, it was the mental and emotional aspects that were most rewarding. “Living closely with others who have similar Parkinson’s symptoms was a valuable experience,” she said. “It was life-changing.” Parkinson’s New Zealand has spaces on the 2018 Outward Bound course and encourages anyone interested in going to put their name on the list to attend. The course is open to people diagnosed before the age of 60 years and currently aged under 65. Participants fundraised some of the course fee and the rest was sponsored by Douglas Pharmaceuticals. Every year Parkinson’s New Zealand runs an UPBEAT Outward Bound course. This course provides an opportunity for members and support staff to participate in a 6-day adventure in Anakiwa filled with mental and physical challenges and a chance to bond with other members.
A great friend and supporter of Parkinson’s New Zealand, pharmaceutical legend Sir Graeme Douglas, died in 2016. Parkinson’s New Zealand would like to thank Douglas Pharmaceuticals for our continued partnership and their sponsorship of the 2017 Outward Bound course.
The course is very rewarding giving participants a chance to reassess their capabilities and accomplish tasks with the support and supervision of the experienced Outward Bound team. On 10 April, nine people with Parkinson’s, three family members and two Parkinson’s New Zealand staff embarked on an adventure – the 2017 Parkinson’s New Zealand Outward Bound course. On arrival at Outward Bound the group were given a few minutes to put their gear in the bunk house, and then it was off for a run. The course continued at this pace despite stormy weather for the next six days. The high ropes course was an opportunity for everyone to challenge themselves. Walking along a single strand wire 10 metres above the group while being encouraged by the rest of the group helped create a close knit team. Over the next few days they rowed a heavy cutter, tramped part of the Queen Charlotte Track, learnt to use kayaks in the surf, slept out in the elements and went on hikes and swims. At the end of the course the group left Outward Bound feeling empowered, inspired and in most cases feeling like their life had changed. One attendee told us that UPBEAT newsletter is online Many of our UPBEAT members are choosing to receive UPBEAT newsletters by email. To reduce printing and postage costs, we would love it if more people received the UPBEAT newsletter by email. For those of you with email we will no longer send a printed copy unless you request one. If we don’t have your email please let us know by emailing UPBEAT@parkinsons.org.nz.