NZ Dystonia Patient Network

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Our Mission

Support

To support dystonia patients with information, advice about living with dystonia and networking opportunities

Awareness

To increase awareness about dystonia – both among the medical community and the general public

Research

To encourage and facilitate research, with the aim of seeking better treatments, prevention, a cure

About Dystonia

Dystonia is a neurological movement disorder characterised by inappropriate and involuntary muscle movements.  It is often misdiagnosed.  The disabling, repetitive and sustained muscle spasms and twisting typical of dystonia are thought to be due to malfunction of a particular part of the brain, the basal ganglia.

Faulty signals from the brain cause muscles to spasm and pull on the body incorrectly. This forces the body into twisting, repetitive movements or abnormal postures. Sometimes the symptoms are accompanied by dystonic tremor.

Unfortunately there is not yet a cure. However, in the vast majority of cases, dystonia does not shorten a person’s life span.

Treatments are available and most people do manage to develop successful strategies for living with dystonia combining treatment with pain control and sensory tricks to help with social situations. Remission from symptoms does sometimes occur but is rare – occurring in around 5-10% of cases.

Usually, when a movement is made, excitation and inhibition work in harmony so contraction of the agonist muscles is coordinated with relaxation of the antagonist muscles. In patients with dystonia there is deficient inhibition of the antagonist muscles. This can result in co-contraction, where the agonist and antagonist muscles contract together.

Research has identified that the major role of the basal ganglia is to balance excitation and inhibition (just like a pair of scales). However, in dystonia this delicate balance is not attained. It is not yet certain whether the problem is with the direct pathway, the indirect pathway or both. However, as dystonia appears to result from insufficient inhibition in the muscles, it may be that the indirect pathway is failing, resulting in impaired suppression of muscle activity. The lack of inhibition of antagonist or surrounding muscles ultimately causes the co-contraction or overflow phenomena seen in dystonia.

One area of focus has been to look at whether dystonia is caused by a shortage of the inhibitory neurotransmitter GABA. It seems plausible that a shortage of an inhibitory neurotransmitter such as GABA may play a role, since dystonia seems to be a failure of inhibition. At present this is a theory that remains unproven; however, one of the treatments for dystonia, which helps in some cases, is to prescribe medications that increase the quantity of GABA such as benzodiazepines, gabapentin or baclofen.

Courtesy of http://www.dystonia.org.uk/

Dystonia is either:

  • Generalised – most common in young patients
  • Focal – starts in adulthood, affecting one or more parts of the body

Types of Dystonia2

The following members of the NZDPN are available to provide advice and support to others nearby and/or with their form of dystonia.   The Area Contact Persons are listed both geographically and by type of dystonia.  When contacting them by email please put ‘Dystonia’ in the subject line to minimise the risk that your message is treated as spam.

For information about a support group in your area please e-mail support@dystonia.org.nz

Location (North to South)

Kaitaia:
Janice Foster – Phone (09) 408 1369

Orewa:
Jayne Lewington Lovell  – jllovell@gmail.com
Lynette Rodgers  – grynleg@windowslive.com

North Shore:
Deb Martelletti  – weehamma@xtra.co.nz 

Auckland:
Jacqui Higgins – jghiggins@xtra.co.nz
Elizabeth McPherson  – elizmcpherson@hotmail.com
Dave Mitchell – pndm1@orcon.net.nz
Brian Wiblin – bcwiblin@xtra.co.nz

Te Aroha:
Kath Chave – albatrosskc@gmail.com 

Te Puke:
Mrs Karen Beaver – jandkbeaver@xtra.co.nz

Taupo:
Matt Cairns – mattcairns@outlook.co.nz

Hawkes Bay
Grace and Roger Terry – bramblehedge@clear.net.nz , Phone: (06) 877 3024

Palmerston North:
Shirley Henderson – enquiries@stampnscrap.co.nz

Otaki:
Philippa & Toby Hooper – phooper@paradise.net.nz   Phone: (06) 364 7618

Lower Hutt:
Jan McCabe – quattromarketing@clear.net.nz

Blenheim:
Linda Jones – lindale247@xtra.co.nz

Christchurch:Barbara Murrell  – barbsie98@hotmail.com

Timaru:
Alice Denne  – adenne@clear.net.nz

Queenstown:
Alex Tate  – alexmorva@slingshot.co.nz

Types of dystonia

Blepharospasm
Elizabeth McPherson  – elizmcpherson@hotmail.com
Barbara Murrell  – barbsie98@hotmail.com

Generalised Dystonia
Kath Chave – albatrosskc@gmail.com
Philippa & Toby Hooper – phooper@paradise.net.nz
Phone: (06) 364 7618

Hemifacial Spasm
Jacqui Higgins – jghiggins@xtra.co.nz

Limbs
Mrs Karen Beaver – jandkbeaver@xtra.co.nz

Oromandibular Dysphonia
Elizabeth McPherson – elizmcpherson@hotmail.com

Spasmodic Dysphonia
Dave Mitchell  mailto:pndm1@orcon.net.nz
Alex Tate  mailto:alexmorva@slingshot.co.nz

Spasmodic Torticollis (Cervical Dystonia)
Matt Cairns – mattcairns@outlook.co.nz
Janice Foster – Phone (09) 408 1369
Alice Denne  – adenne@clear.net.nz
Ross Farquhar – farquhar@inspire.net.nz  Phone: (06) 353 1915
Jayne Lewington Lovell  – jllovell@gmail.com
Linda Jones – lindale247@xtra.co.nz
Jan McCabe  – quattromarketing@clear.net.nz
Deb Martelletti – weehamma@xtra.co.nz
Lynette Rodgers – grynleg@windowslive.com
Grace and Roger Terry – bramblehedge@clear.net.nz,  Phone: (06) 877 3024
Brian Wiblin  – bcwiblin@xtra.co.nz

Writers Cramp
Mrs Karen Beaver – jandkbeaver@xtra.co.nz
Grace and Roger Terry –bramblehedge@clear.net.nz
Jayne Lewington Lovell  – jllovell@gmail.com

 

Dystonia Medical Research Foundation (DMRF)

www.dystonia-foundation.org          info@dystonia-foundation.org

The Dystonia Society

http://www.dystonia.org.uk/             info@dystonia.org.uk

National Spasmodic Dysphonia Association (NSDA)

www.dysphonia.org                         nsda@dysphonia.org


Benign Essential Blepharospasm Foundation (BEBRF)

http://www.blepharospasm.org/        bebrf@sbcglobal.net


WeMove (Movement disorders)

http://www.wemove.org

Number of People by Country Living with Dystonia

United States and Canada

United Kingdom

Australia

New Zealand

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