I S S U E 3 | S E P T E M B E R 2 0 2 0 TULIP TALKS

T H E Q U A R T E R L Y N E W S L E T T E R F O R P A R K I N S O N ' S A U C K L A N D A Word From Your Parkinson's Nurses

R A C H E L T U R N E R | M A R G A R E T M C N A B | Y V O N N E G L A S S B O R O W | D E B B I E P I N C O T T | G L E N Y S B E S T

2020 has been a varied and unusual year so far. Many changes have come about, some out of necessity others as a renewing of experiences. In West the support Parkinson's Auckland group has moved , while the Men’s group has closed for the near future. In North Rodney we have managed to absorb the challenges with little disruption. South Rodney took on Contacts the challenge of change with gusto, with most groups changing venue. All the groups are now settled into new venues with a renewed interest from clients. Please get in touch with these Parkinson's Rachel Turner - Parkinson's Nurse for West Auckland and Rodney Nurses and Educators should you need any advice regarding Parkinson's: Hi all, it’s been great to be out and about again and to be able to start getting to know some of you in person. Our Windsor Park group now has guest speakers on alternating months and our other two groups are meeting in more informal settings. I’m slowly Margaret McNab, Central Auckland working through my contacts but it will take a while to touch base with all of you, so don’t hesitate to give me a call, text or email at any time. Phone: 09 827 1447 or email: [email protected] Debbie Pincott - Parkinson's Nurse for North Shore

Yvonne Glassborow, East Auckland Hello, I am Glenys Best , the new South Auckland / Franklin Parkinson’s nurse. It is now two months since I started with Parkinson NZ, and it’s like I have come home to work in Phone: 09 533 1105 or email: the community I grew up in. I was born in Patumahoe, and schooled at Karaka and [email protected] . I lived some years in / Otahuhu areas, when I training as a Registered Nurse at Middlemore Hospital in the 70’s. I married a local from Papakura and we lived in Drury, where I raised 2 children on a small life style block. You could call me, “a true Counties Girl”. My nursing career saw me spend many years as a district Debbie Pincott, North Shore nurse. More recently employment as a Community Geriatric Nurse Specialist has made this transition into this new role, effortlessly. Having previously travelled to all corners of Phone: 027 520 4836 or email: the counties region, I still can get myself lost, so I will eventually arrive. Already I have been busy, having visited 50 people with Parkinson’s and your families, and meeting [email protected] many more at the local support meetings, and exercises groups. “Even if I can’t remember all your names” . I thank you for your warm welcome.I look forward to meeting many more of you over the coming months so that together we can ensure that Rachel Turner, West Auckland & Rodney you are living life to your greatest potential. Any questions you have, please phone or email me. Phone: 027 520 6260 or email: Glenys Best - Parkinson's Nurse for South Auckland [email protected]

Glenys Best, South Auckland Hello to everyone in East Auckland. We have a new East Auckland Exercise Group Starting up for People with Parkinson’s. There are three spaces available at the East Auckland Tai Chi Group. Phone: 027 520 6805 or email: There is no cost to trial a session. [email protected] Then there are my regular support groups: Carers support group dates: September 15, October 20, November 17 at 10 am. at the Hawthorn Dene Café, Botany Rd

Monthly Meeting dates: September 23 and October 28 at 10 am, November 25 at noon. St Thanks to our recent funders! Andrews Church Centre, corner of Ridge Road & Vincent Street, Howick.

Yvonne Glassborow - Community Educator for East Auckland

It has been wonderful seeing you all face-to-face in groups, meetings and during home visits recently. The meetings are held in the 1st Friday (Kohimarama at St Thomas’ Church Hall) and 2nd Friday (Mt Eden at St Barnabas Church Hall) of each month from 10 am - 12 pm.

The monthly Carers’ meeting at the Circus Café in Mt Eden is on 4th Thursday of each month at 1.30 pm. The dates of the Men’s Group at 9.30 am and Women’s Group at 11 am are Wednesdays: 23rd September, 21st October and 18th November. The dates of the Partners Group on Wednesdays at 11am are on 9th September, 14th October and 11th November.

Men’s, Women’s and Partners groups are held at the Orakei King’s Garden Centre Café. I look forward to seeing all who are able to attend then.

Margaret McNab - Parkinson's Nurse for Central Auckland This July we launched the Tulip Cream Tea campaign around the country and by now many of you will have registered to host or have participated in a fun social event.

The Tulip Cream Tea campaign has allowed us to foster fantastic relationships out in the regions, with many people and businesses signing up as event hosts. It has also been so wonderful to make new acquaintances within our regions.

The Tulip Cream Tea events have offered an opportunity for many of you to enjoy a social gathering while doing some good. In addition, it has been heartwarming to have volunteer sewers from the far north to the deep south making a wonderful range of aprons to sell at our Tulip Cream Tea events. We hope to bring you a snapshot of the campaign outcomes and images from around in the December issue of Tulip Talks. In the meantime you are welcome to head to the Tulip Cream Tea Facebook page for current event updates from around the country.

We extend our thanks to Dilmah NZ, Lewis Road Creamery and Trio Soy for their sponsorship and support and every one of you who has registered to host this year. We look forward to an even bigger and brighter campaign in 2021. LIVING POSITIVELY WITH PARKINSON'S SOCIAL EVENT EAST AUCKLAND Karen Schade, Leanne Havill and Janeane Summerfield Community Engagement Advisors Sunday, 1st November 2020 | 2:30 pm - 4:30 pm Parkinson's New Zealand GUEST SPEAKER ANDREW BELL Round the Bays 2021 Preparations INTERIM CEO OF Topic: Early-onset Team PNZ was formed by and coming out of PARKINSON'S NZ 82-years-old exercise the Parkinson’s enthusiast Peter Coulson, closet who now has Parkinson's. Team PNZ was there as Peter crossed the finish line for the 39th time at RTB Auckland, earlier this Andrew was diagnosed in January 2020 after being ‘aware’ of symptoms for year! about a year. Andrew’s father also had Parkinson’s and he will be talking about the family journey. For 2021, we are hoping After being diagnosed Andrew decided to resign from his role as Executive for a much larger Team Director of The Fred Hollows Foundation NZ. Since 2010, Andrew had worked tirelessly with the staff, graduates and Trustees to achieve the vision of the PNZ, proudly representing late Professor Fred Hollows of a world where no one is needlessly blind. Parkinson's New Zealand. During his tenure, Andrew was instrumental in raising the funding and If you are interested in managing significant infrastructure projects including the Pacific Eye Institute joining us next year, go and mobile eye clinic in Fiji, the National Eye Centre in Timor-Leste, the eye clinics in Kimbe and Madang, Papua New Guinea and the world-class Regional ahead and start training Eye Centre in Honiara, Solomon Islands. In 2019 the Foundation completed for the 8.4-km dash! the renovation and extension of the National Eye Centre in Port Vila, Vanuatu. Interested? Contact Fisher House, 117 Kerwyn Ave, Highbrook East Tamaki, Auckland [email protected] Cash bar Welcome to Our Latest AG Members!

"Hi, my name is Johnny Boyle. I’m a 53 year old single dad with three daughters & live in the beautiful Waitakeres, West Auckland. I was diagnosed with Parkinson’s about 3½ years ago.

Some of you may know me from my participation with Counterpunch Parkinson’s, from Outward Bound this year, or from the last two UpBeat conferences. Beside medication, I rely upon exercise to help me fight Parkinson’s. Counterpunch Parkinson’s is central to this plus I try to exercise to a sweating level for at least 30 minutes every day. Oh, I also use a lot of (mostly dark) humour.

Life has changed with Parkinson’s but it’s different, not the end. I try to help people with Parkinson’s (online in social media and coaching at Counterpunch) and health professionals (I’ve done some work with the Physio team at AUT & with a UK tech company) and generally spread the word to educate on what Parkinson’s means to me. The best thing I have done since diagnosis has been attending the week course at Outward Bound where I met a fabulous bunch of people and learnt a lot about myself. I’m looking forward to helping Parkinsons NZ & the people in the Parkinson’s community with my work in the Auckland Action Group." JOHNNY BOYLE

"I was first diagnosed with Parkinson’s in 2007. I am fortunate the disease has progressed slowly and I still lead a full and very active life.

I am sure a healthy diet, the right attitude, the will to win and regular physical exercise has helped me greatly. Recently I completed the Upbeat Outward Bound Course which I would truly recommend to everyone. It was life changing in many ways.

Medication for me has remained unchanged in the previous 18 months. I am positive an increase In exercises and added variety of challenges has attributed to this. Being part of an Action Group is a new and different challenge for me. I’m sure I’ll learn a lot along the way and I look forward to meeting new people and supporting others." VIVIENNE PALMER

"I have lived with my husband of 51 years in the house that he built 48 years ago. We have 3 children and 8 grandchildren. We have lived a wonderful and happy life, both involved in our community on committees and coaching sport. My sport specialty has been golf, which I have played since I was 10 years old. I have represented North Harbour over many years and have been North Harbour Selector and President of North Harbour Golf. I have also been very involved with my golf club - Pupuke and was rewarded with a Life Membership 3 years ago as well as a Life membership at North Harbour Golf.

When in 2012, I was worried about my right arm - I went to my doctor thinking that I had strained a nerve in my arm. My Dr sent me to a Nuerologist - (I did wonder why on earth she was sending me to a Neurologist) so when I was told that I had Parkinsons disease, my husband almost had to pick me up off the floor. I am not the kind of person to give in to something like PD, so I am doing my bit by joining the Action Group and continue with my golf and have upped my exercise regime to try and slow the progression of this condition.

In March, we moved from our home in Milford to a retirement village in Albany and we are so glad we did. It was the right thing for us to do." SANDIE JENNINS Exercise Groups Across Auckland

East Auckland Tai Chi Group New East Auckland Exercise Group Starting up for People with Venue: St Andrews Church Parkinson’s Centre, corner of Ridge Rd & Vincent St, Howick. Venue: Howick Children’s & Youth Theatre (used to be Star of the Sea Convent), 29 Granger Road, Tuesdays at 11 am – 12 noon. Howick. Three spaces available – there is no cost to trial a session Start Date: Fri 16 October (then every Friday during school term time)

Cost: $7 a session, payable in Time: 1 pm – 1.45 pm blocks of ten sessions. Cost: $12 a session. Payable in blocks of four Contact Yvonne (Community sessions (attendees will receive an invoice by Educator) for more details (09) email)

533 1105. Criteria: Ability to stand for 30 minutes (there are chairs to use to support your balance if Franklin Gentle Exercise Group necessary) For more details or to enrol, contact Amanda Venue: Baptist church, 128 (manager of Active Physio, Howick)

Victoria Street West, [email protected] or phone 535 9160. Tuesdays at 10 am Amanda will need your name, contact phone number and email address. PLEASE NOTE: Due to the COVID-19 Pandemic, we are Groups and Meetings unable to hold meetings or support groups currently. Please get in touch with the office in order to check for updates. The following dates and times are tentative. LOCATION GROUP DAY TIME ADDRESS

1st Friday: St Thomas’ Church Hall Central Auckland Support Meetings First and Second Friday of each month 10:00 am 2nd Friday: St Barnabas Church Hall Circus Café, 447 Mt Eden Road, 4th Thursday Each Month Central Auckland Carers Group 01:30 pm Mt Eden

Central Auckland Men's Group September 23, October King’s Garden Centre Café , Orakei 21 and November 18 09:30 am Road, Orakei Basin September 23, October 21 King’s Garden Centre Café , Orakei Women's Group Central Auckland and November 18 11:00 am Road, Orakei Basin September 9, October 14 King’s Garden Centre Café , Central Auckland Partner's Group and November 11 11:00 am Orakei Road, Orakei Basin West Auckland and Rodney North Rodney Support Group 1st September, 6th October, 10:00 am Totara Park Village, 5 Melwood 3rd November Drive, Warkworth

8th September, 13th October, Venue and speakers to be West Auckland and Rodney South Rodney Support Group 3rd November 10:00 am advised, contact Rachel Turner

West Auckland and Rodney West Auckland Support Group 23rd September, 28th October, Te Atatu Peninsula Community 25th November 1:00 pm Centre, Dotterel Room Dawns Kitchen, West Auckland Carers Group 15th September, West Auckland and Rodney 20th October, 17th November 10:00 am Kelston

Venue to be advised, contact Carers North Rodney Group 17th September, 15th October, West Auckland and Rodney 19th November 10:00 am Rachel Turner

Silver moon café West Auckland and Rodney 28th September, 23rd November (no Carers South Rodney Group October group due to Labour Day) 10:30 am Silverdale

16th September, Silver moon café West Auckland and Rodney Under 65 Group 21st October, 18th November 1:00 pm Silverdale

22nd September, 27th October Kreem Café, 231 Universal West Auckland and Rodney Women's Group 10:00 am Drive, Henderson 24th November

Manurewa Cosmopolitan club 6-10 South Auckland Manakau Support Group 2nd Wednesday of Month 10:00 am Alfriston Road

Manurewa Botanical Gardens, South Auckland Manakau Carers Group 3rd Wednesday of Month 10:00 am Hill Rd, Manurewa

South Auckland Franklin Support Group 1st Thursday of Month 10:00 am 128 Victoria Street West , Pukekohe

Pots & Pedals café,Kitchener South Auckland Franklin Carers Group 4th Thursday of Month 10:30 am Road, Pukekohe

St Andrews Centre, 85 South Auckland Waiuku Support Group 2nd Monday of Month 10:00 am Queen Street, Waiuku

9 Kitchener 2nd Tuesday of Month South Auckland Waiuku Carer group 10:00 am street Waiuku

49 McKenzie Samoan Support Group 4th Wednesday of Month South Auckland 11:00 am Road.

St Andrews Church Centre, corner of East Auckland Monthly Support Group September 23, 2020 10:00 am Ridge Road & Vincent Street, Howick

St Andrews Church Centre, corner of East Auckland Monthly Support Group October 28, 2020 10:00 am Ridge Road & Vincent Street, Howick

St Andrews Church Centre, corner of East Auckland Monthly Support Group November 25, 2020 12:00 pm Ridge Road & Vincent Street, Howick

10:00 am Hawthorn Dene East Auckland Carers Group September 15, 2020 Café, Botany Rd

10:00 am Hawthorn Dene East Auckland Carers Group October 20, 2020 Café, Botany Rd

November 17, 2020 Hawthorn Dene East Auckland Carers Group 10:00 am Café, Botany Rd

1st Thursday of each month Kings Plant Barn, North Shore Carers Support Group 3rd September, 1st October, 10:00 am Porana Ave, Wairau 5th November

Windsor Park Support 2nd Thursday of each month Windsor Park Baptist North Shore 10th September, 8th October, 10:00 am Church, 550 East Coast Group 12th November Road, Mairangi Bay

3rd Tuesday of each month Northcote Tavern, Queen North Shore Young Person Group 15th September, 20th October, 11:30 am 17th November Street, Northcote