Resources

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Self-Help, Management & Treatment, Related Disorders

 

Get Help with Depression

Services

Support is available for anyone who may be depressed or for a family member or carer who may be concerned about someone by calling:

Lifeline 13 11 14 – 24hr phone counselling service.

Salvo Care Line 1 300 363 622 – 24hr phone counselling service and referral.

SANE Helpline 1 800 187 263 – information, referral and advice; not counselling.

BeyondBlue 1300 22 46 36 http://www.beyondblue.org.au – Australian national depression initiative; not a crisis service; not counselling. Information & referral service; information on depression in languages other than English can be obtained from the website.

All these services are completely confidential.

Websites

http://www.blackdoginstitute.org.au/

http://www.beyondblue.org.au/index.aspx?

http://moodgym.anu.edu.au a free, interactive, online self-help guide

Reading

Beating the Blues: A Self-Help Approach to Overcoming Depression by Susan Tanner and Jillian Ball

Publisher: Doubleday
ISBN-13: 9780646366227
available at the Australian Online Bookshop

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Mobility Management

Find a Physiotherapist especially a neurophysiotherapist for assessment, program development, monitoring and treatment.

http://members.physiotherapy.asn.au/source/members/apa_MemberSearch.cfm?search=FP – An Australian Directory of Physios

http://www.physiotherapyexercises.com/  – a website with hundreds of exercises (always consult a physiotherapist)

WeMove

http://www.wemove.org

 

Coping & Caring

  • A guide for those who have a chronic disorder or look after someone with one.
  • Dos and Dont’s for friends: an article on the SP Foundation website http://sp-foundation.org/content/community/tips-friends.html

 

Assistive Technologies – for the home, car and elsewhere

Independent Living Centres Australia  http://www.ilcaustralia.org/home/default.asp

  • Getting in and out of bed
  • Moving around at night in the dark
  • Showering
  • Toilet use
  • Kitchen and cooking
  • Moving around/walking
  • Phones and personal alarms
  • Cars and access to them.

The National Spinal Cord Injury Association (USA)

Many useful resources on their website, including free downloadable publications on choosing the best mobility support alternative, adaptive technologies for the car, etc. http://www.spinalcord.org/publications/

 

Bladder & Bowel Problems

National Continence Helpline 1800 33 00 66

Find a Toilet

www.toiletmap.gov.au

email: helpline@toiletmap.gov.au

Other Resources

Continence Nurses and Physiotherapists all can be located either through the CFA helpline or through your Area Health Service. You can ring the National Continence Helpline on 1 800 33 00 66. The following websites offer a wealth of useful information:

 

South Australian Government website (http://www.sa.gov.au/government/entity/1646/About+us+-+Disability+Services/News%2C+events+and+resources/A-Z+of+disability+information+sheets+and+publications). Click on the letter C for Continence and scroll down to “Continence:  key points” and “Continence Resource Center” to learn about free services provided including a phone number for enquiries and appointments with the Registered Nurse at the Continence Resource Centre.

 

Continence Foundation of Australia: http://www.continence.org.au/

Offers a national helpline phone number 1 800 33 00 66 and much more.

 

Bladder and Bowel Website, Australian Government Department of Health and Ageing: http://www.bladderbowel.gov.au/

 

Better Health Channel, Victorian Government Department of Health: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Incontinence_management?open

 

MS Australia – Bladder Dysfunction: http://www.msaustralia.org.au/symptoms-bladder.asp

 

Spastic Paraplegia Foundation (USA): http://www.sp-foundation.org/treatment.html

 

National MS Society (USA): http://www.nationalmssociety.org/living-with-multiple-sclerosis/you-can/control-bladder/index.aspx

 

This video http://www.pelvicexercises.com.au/bladder-control-training/ is ideal for women (and men too) who experience urinary urgency (i.e. intense bladder spasm and overwhelming urge to empty their bladder). It provides simple, effective and practical strategies and bladder control exercises to overcome bladder urgency, retrain the bladder and stay dry.

 

Descriptions of sacral nerve treatment:

http://www.medtronic-gastro-uro.com.au/bladder-sacral-nerve-treatment.html

http://www.goodhealthcare.com.au/nocturnal-enuresis/sacral-nerve-stimulation

 

Get Information on HSP / Learning Resources

GARD

The Genetic and Rare Diseases Information Center (GARD) http://rarediseases.info.nih.gov/GARD was established by the National Human Genome Research Institute and the Office of Rare Diseases Research at the National Institutes of Health in the USA to provide responses to public information requests.

Information is provided in Spanish or English and you don’t have to be living in the US to ask a question. They do not provide genetic counselling, diagnostic testing, referrals, medical treatment or advice.

Requests can be made by e-mail, phone, postal mail or fax:

E-mail: GARDinfo@nih.gov or via their website http://rarediseases.info.nih.gov/GARD/EmailForm.aspx

Phone: from Australia +1 301 251 4925. Information Specialists are available Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time in the US (excluding US Federal holidays) to respond to questions about genetic and rare diseases.

Mail: send your request to

GARD

PO Box 8126

Gaithersburg, MD 20898-8126 USA

Fax: fax to +1 301 251 4911

 

Learning about HSP

A good online resource http://www.elearningdigital.com/will/Hereditary_Spastic_Paraplegia/.

 

Support Organisations

SHOUT

http://www.shout.org.au – Self Help Organisations United Together

National Organisation for Rare Disorders

http://www.rarediseases.org

National Ataxia Foundation

http://www.ataxia.org

Disability Information and Resource Centre – South Australia

http://www.dircsa.org.au

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Genes & Testing

Australian Gene Testing Service for HSP

Concord Molecular Medicine Laboratory of the Sydney South West Area Health Service

http://www.cs.nsw.gov.au/csls/handbook

Centre for Genetics Education – NSW Health

http://www.genetics.com.au

Association of Genetic Support of Australasia

http://www.agsa-geneticsupport.org.au

Genetic Support Council – Western Australia

http://www.geneticsupportcouncil.org.au

Human Genome Variation Society

http://www.hgvs.org

GeneTests – US site

http://www.genetests.org

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Global HSP Support Organisations

SP Foundation USA

http://www.sp-foundation.org

A well-resourced site for the US and global SP communities for both HSP & PLS (Primary Lateral Sclerosis).

The Hereditary Spastic Paraplegia Support Group

http://www.hspgroup.org/

This is the home of the UK group – also have some European members.  They produce newsletters, hold an annual meeting, regional meetings, run a help-line and maintain a library.

The European Federation of HSP

https://sites.google.com/site/eurohsp/home

The HSP groups from Denmark, France, Italy, Norway, Spain and the United Kingdom decided to create this Federation with the help of
EURORDIS, the European coordinator of Patients with Rare Diseases. This is a legal and formal group constituted to advance the common aims of the member organisations through a combined and focused entity.

HSP – Selbsthilfegruppe

http://www.hsp-selbsthilfegruppe.de

This group in Germany are very active, with a number of regional groups and an important international presence.  They are well connected with and highly involved in the research community with a focus on both genetic research and research into management and treatment of HSP.  They provide support for German HSPers on everything from medical insurance, housing, nursing care, vehicles and work / leisure issues.

If you want to read the site in English, copy and paste the web address into a Google Search, and when the corresponding item comes up in the search results, you will see ‘Translate this page’ beside the title. Click on that and you will get an approximate English translation.

Association Strümpell-Lorrain

http://asso.orpha.net/ASL/index.htm

This is the French Association who are active supporters of the European alliance.

If you want to read the site in English, copy and paste the web address into a Google Search, and when the corresponding item comes up in the search results, you will see ‘Translate this page’ beside the title. Click on that and you will get an approximate English translation.

Asociación Española de Paraparesia Espástica Familiar

http://www.aepef.org/
This is the Spanish site – with almost 18,000 visits since 2002 – making them as long standing as any HSP site anywhere and with a lot of interest.

If you want to read the site in English, copy and paste the web address into a Google Search, and when the corresponding item comes up in the search results, you will see ‘Translate this page’ beside the title. Click on that and you will get an approximate English translation.

LASPA – The Norwegian Association for HSP

http://www.naspa.no

Landsforeningen for Arvelig – Spastisk Paraparese/-Ataksi. Norway

The HSP-Support Group Europe

http://www.hsp-info.eu/

The focus is on sharing news and information, education and connection between HSPers from all over Europe. They also maintain a comprehensive database of research literature on HSP.

European FSP Support Groups

http://assoc.orange.fr/asl.spastic/fichierslies/spatax/EUROPEAN%20FSP%20SUPPORT%20GROUPS.htm

This page has information for HSP / FSP support groups in Europe, covering many countries.

Dr. Fink’s site – University of Michigan

http://www.med.umich.edu/hsp/

Dr. John K. Fink is the Director of the Neurogenetic Disorders Clinic which is part of the world-renowned University of Michigan Health System that includes a broad range of medical research and a large teaching hospital in Ann Arbor.  Dr. Fink is a world leader and acknowledged expert on HSP, and is actively involved in HSP research.