Parkinson’s disease care guide

Where can I go for help?

Living with Parkinson’s disease or caring for someone with Parkinson’s is full of challenges, but you don’t have to feel alone. Parkinson’s Queensland currently operates 36 support groups throughout metropolitan and rural Queensland. These support groups are informal and friendly and offer members a chance to meet and talk with others while offering each other emotional and practical support. Besides helping you realise you are not alone, the support groups give you a chance to share your feelings and hear the experiences of others. Parkinson’s disease support groups are ideal for people living with Parkinson’s disease, their careers, friends and family members.

SUPPORT GROUPS

CALOUNDRA SUPPORT GROUP

Meetings are held on the second Wednesday of every month.

Venue: IRT Parklands, 242 Parklands Boulevard, Meridan Plains, Qld 4551

Co-ordinator: Allan and Shirley Voss

Phone 07 5437 0892

Email: allanvoss5@bigpond.com

NAMBOUR & DISTRICT SUPPORT GROUP

Meetings are held on the first Friday of every month.

Venue: The Sanctuary Park, Church of Christ, 22 National Park Rd

Nambour, Qld 4560

Co-ordinator: Ray Clark

Phone 0401 173 336

Email: ray.clark1@bigpond.com

SUNSHINE COAST SUPPORT GROUP

Meetings are held on the third Friday of every month. (Feb - Dec)

Venue: Noosa Community Centre 11 Wallace Dr, Noosaville Qld 4566

Co-ordinator: Ann Duley

Phone 0458 009 601

Email: parkuandme@gmail.com

Resources

There are great resources available for those suffering with Parkinson’s and their carers. Here is a list of some of the best websites to get you started.

PARKINSON’S QUEENSLAND

Since 1985, Parkinson’s Queensland has helped thousands of Queenslanders in their journey with Parkinson’s and related disorders, not only in the early stages after diagnosis, but throughout the condition’s progression. Parkinson’s Queensland Inc (PQI) is a charitable organisation that provides individuals, families and the health, aged and disability sectors with information, support and education for people living with Parkinson’s www.parkinsons-qld.org.au

PARKINSON’S AUSTRALIA

Parkinson’s Australia is the national peak body and charity representing more than 80,000 Australians living with Parkinson’s. Parkinson’ Australia advocates for the Parkinson’s community, promotes best practice models of service delivery, works to increase awareness of Parkinson’s and provides information and education on Parkinson’s symptoms, diagnosis, causes and treatments. www.parkinsons.org.au

PARKINSON’S LIFESTYLE COACH

Nikki Creber provides support to people who have recently been diagnosed with Parkinson’s Disease and those who find it hard to cope with the condition. She provides information, strategies to deal with the condition and links clients to appropriate services and support on the Sunshine Coast and Noosa.

Phone 0434 149 688 www.nikkicreber.com.au

THE BRAIN FOUNDATION www.brainfoundation.org.au/ disorders/parkinsons-disease

The Brain Foundation is a nationally registered charity dedicated to funding world-class research Australia-wide into neurological disorders, brain disease and brain injuries including Parkinson’s disease.

SHAKE IT UP www.shakeitup.org.au

Shake It Up Australia Foundation is a notfor-profit organisation established in 2011 in partnership with The Michael J. Fox Foundation (MJFF). It promotes and funds Parkinson’s disease research in Australia aimed at better treatments and ultimately a cure.

MS QUEENSLAND

How MS Queensland can help MS Queensland assist people with MS and other progressive neurological diseases such as Parkinson’s disease. They provide the following services: Service coordination, NDIS access assistance, Neuro physiotherapy, Accommodation, Employment services www.msqld.org.au/related-diseases/ parkinsons-disease/

PARKINSON’S DISEASE WARRIOR

PD Warrior is your support network, education channel, enabler, confidence giver and motivational coach. This rehab program will teach you how to move well, believe in yourself and live better with Parkinson’s .People who have completed the PD Warrior 10 Week Challenge report feeling more confident in their movements, are able to move more freely and are getting back into life. The program is offered by:

NAMBOUR SELANGOR PRIVATE HOSPITAL

62 Netherton St, Nambour QLD 4560

Phone: 07 5459 7455

EDEN REHABILITATION HOSPITAL

Sunshine Coast & Gympie

50 Maple Street, Cooroy QLD 4563 Phone 07 5472 6472

FACEBOOK SUPPORT GROUPS

@parkinsonsqld

@lifewithparkinsons @ParkinsonsAust

@michaeljfoxfoundation

LSVT LOUD? ® THE LEE SILVERMAN VOICE TREATMENT (LSVT LOUD®)

This program is currently the most efficacious treatment for the speech disorder in Parkinson’s Disease.The program is run by:

EDEN REHABILITATION HOSPITAL

Sunshine Coast & Gympie

50 Maple Street, Cooroy QLD 4563 Phone 07 5472 6472

PARKINSON’S ACTIVITY

AND PROGRAMS

DANCE FOR PARKINSON’S AUSTRALIA

Groups

These classes offer the joy of dance to people with motor/mobility issues as a result of Parkinson’s MS, stroke, arthritis, loss of muscle and joint strength and flexibility, or less mobility from ageing. Similar to the Dance for PD model, classes are offered in Tewantin, Noosa and Gympie by Gail Hewton who has over 35 years professional dance experience.

To register or for more information contact Gail Phone 0411 720 391

Email: gailphil@optusnet.com.au

SUNSHINE COAST HEALTH SERVICE

Run a 10 week program for people living with Parkinson’s Disease. Suite 8 Lakeshore Shopping Centre 5-9 Lakeshore Avenue

Buderim Qld 4556

Phone 07 5363 0288

HOW CAN I MAKE EVERYDAY LIVING WITH PARKINSON’S EASIER?

Being diagnosed with Parkinson’s disease is life-changing and the little things that make up daily routines may seem more difficult as the condition progresses. However, these changes don’t mean the end of your independence. A big part of living with Parkinson’s disease is finding the best tools to help you continue living independently with a greater sense of confidence. As your symptoms change, look into new home care products that help you tend to every day’s tasks.

Dressing aids such as button hooks and zipper pulls can make getting dressed so much easier for those who have tremors or difficulty with coordination and balance. Bathing can be made easier with the right tools such as shower seats and long handle sponge kits. If you love cooking, you don’t have to give up your culinary passion because of difficulty with grip or tremors, with great tools available such as a cutting board with a pivoting knife or a rocking knife, the solutions are endless.

Here’s a list of some of the best online stores offering fantastic devices that help make living with Parkinson’s so much easier.

www.leef.com.au www.lakesidemobility.com.au www.patienthandling.com.au www.independenceaustralia.com

BOOKS TO READ ON PARKINSON’S DISEASE

A PARKINSON’S PRIMER: AN INDISPENSABLE GUIDE TO PARKINSON’S DISEASE FOR PATIENTS AND THEIR FAMILIES. Diagnosed with Parkinson’s disease in 2004, lawyer John Vine learned a lot in the months and years following. He decided to share his experience with other people in his shoes and their families. The result is ‘A Parkinson’s Primer”.

THE PARKINSON’S PLAYBOOK: A GAME PLAN TO PUT YOUR PARKINSON’S ON THE DEFENCE.

BY ROBERT SMITH

This book gives you all the strategies you need to gain control after a Parkinson’s disease diagnosis. An entertaining and empowering book.