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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
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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)
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
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.
National Continence Helpline 1800 33 00 66
email: helpline@toiletmap.gov .au
Get Information on HSP
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
Support Organisations
http://www.shout.org.au – Self Help Organisations United Together
National Organisation for Rare Disorders
Disability Information and Resource Centre – South Australia
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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
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
GeneTests – US site
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Global HSP Support Organisations
SP Foundation USA
A well-resourced site for the US and global SP communities for both HSP & PLS (Primary Lateral Sclerosis).
- Patient Forum – a vast range of information, support and interaction including Email Support Groups – join a listserve and get the latest information regularly by email. Take part in live chat sessions.
- Glossary - definitions and explanations of everything to do with HSP
- Research Archives – an important compendium of knowledge about HSP.
The Hereditary Spastic Paraplegia Support Group
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
Landsforeningen for Arvelig – Spastisk Paraparese/-Ataksi. Norway
The HSP-Support Group Europe
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
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.