Resources

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Government Disability Resource directories

Disability Resources – Government listings Australia wide and by State/Territory (updated June 2017)

Australia-wide

Dept. of Human Services: https://www.humanservices.gov.au/

and specifically for disability: https://www.humanservices.gov.au/customer/themes/people-with-disability

New South Wales: https://www.nsw.gov.au/services/services-by-need/people-with-a-disability/your-rights

Choose from BROWSE SERVICES in bottom left corner.

Ability Links – https://www.abilitylinksnsw.org.au/

ACT: http://www.communityservices.act.gov.au/disability_act

Northern Territory: https://nt.gov.au/wellbeing/disability-services

Queensland: https://www.qld.gov.au/disability/

South Australia: https://www.sa.gov.au/topics/care-and-support/disability

Tasmania: http://www.dhhs.tas.gov.au/service_information/disability/disability_services

http://www.dhhs.tas.gov.au/disability

http://www.service.tas.gov.au/records/?task=2602&topic=1584

Victoria: http://www.dhs.vic.gov.au/for-individuals/disability

additionally: http://www.vic.gov.au/health-community/disability-services.html

Western Australia: https://www.wa.gov.au/information-about/health-wellbeing

and specifically for disability: https://www.wa.gov.au/information-about/health-wellbeing/disability

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Self-Help, Management & Treatment, Related Disorders

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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: [email protected]

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: [email protected] 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

  • Dr. John Fink of the University of Michigan, a recognised authority on HSP, has published widely on the condition. He has authored a comprehensive overview of HSP that is updated from time to time.
  • On the SPF (USA) website is an HSP booklet in PDF format that you can download. It covers the basics of HSP and contains a lot of useful information in plain English, non-medical language… definitely worth a read!
  • Another good resource on the SPF (USA) website is a dictionary of useful words related to HSP called Words to Know!, also in PDF format that you can download. It includes a multitude of both common and technical/medical terms and provides a ready reference to help understand more about the condition.
  • Wikipedia, the online encyclopaedia, also provides a good overview of HSP.
  • Browse around this website and check out the RESOURCES section.
  • Our German colleagues have an excellent resource on their website.
  • A thorough overview of HSP has been produced in South Korean and is highly recommended. Their web-published article is an excellent ‘one-stop shop’ for learning about HSP. It is divided into the following sections:
    • Overview
    • Differential Diagnoses & Workup
    • Treatment & Medication
    • Follow-up
    • Multimedia
  • 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 Services 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 and Rare Disease Network (GaRDN) – Western Australia

https://gardn.org.au/

PathWest – WA Health genetic testing service

https://pathwest.health.wa.gov.au/Pages/default.aspx

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.

RareConnect

RareConnect is a partnership of Eurordis and NORD aimed at connecting rare disease patients globally. They have a dedicated HSP page.

https://www.rareconnect.org/en/community/hereditary-spastic-paraplegia

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.

Tom Wahlig Stiftung

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

This is also a German group that has been supporting people since 1998 and promoting and funding HSP research.

“On our website for information about the disease, contacts, therapies, the level of research and how you can help us work for those affected”.

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. John Fink – 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.

 

Social Media

 

Here is a link to a listing of social media sites, developed and maintained by Adam Lawrence of the UK HSP Support Group:

http://hspjourney.blogspot.com/2017/03/community-pages-2017.html

 

Here are a few other sites not listed above:

遺傳性痙攣性下身麻痺 Hereditary Spastic Paraplegia HSP

This appears to be a Taiwan-based Facebook support group in the Chinese language.

https://www.facebook.com/groups/336401663115110

 

Hereditary Spastic Paraplegia Australian Support Group

Welcome to our Group. It is a place of support and information for Australians with Hereditary Spastic Paraplegia or Primary Lateral Sclerosis, their partners/carers, and parents of children with HSP and/or PLS.

https://www.facebook.com/groups/1742528676008690

 

Christian’s with HSP / PLS Support Group – (Hereditary Spastic Paraplegia)

This Group has been assembled for the cause of people sharing both their experiences with HSP and PLS as well as asking Questions that can be brought up to others to help with situations and circumstances involved with HSP and PLS. To allow us all to pray for each other and also seek answers in a biblical and Christian way.

https://www.facebook.com/groups/409023432640661

 

Hereditary Spastic Paraplegia SPG 47

If you or a loved one has been diagnosed with HSP SPG 47, I imagine that I know what you are feeling right now: Lost, confused, terrified and, quite frankly, lonely. This seems to be such an isolated disorder. You can’t google this sub-type of Hereditary Spastic Paraplegia. There just isn’t enough about it. There are only 11 people in this world that I am aware of with this particular diagnosis. 11 people. Nine of them are from the Middle East and, even if we knew how to reach them, the language barrier would make it nearly impossible to talk to them. One other in the United States.

https://www.facebook.com/groups/306143673081011

 

Georgia Hereditary Spastic Paraplegia & Primary Lateral Sclerosis

This page is dedicated to caregivers, family members, and patients with either HSP or PLS. HSP and PLS are neurological disorders. To learn more, please visit sp-foundation.org.

https://www.facebook.com/groups/782318371827738

 

Arizona Hereditary Spastic Paraplegia & Primary Lateral Sclerosis

Hello! This group was made for Arizonians with Hereditary Spastic Paraplegia (HSP) or Primary Lateral Sclerosis (PLS). Our group is closed so posts are not viewable to anyone who is not a member and members posts do not show up on anyone’s timeline.

The Arizona state ambassadors for the Spastic Paraplegia Foundation made this group so we could better be able to share information and experiences with resources, doctors, ect, on more of a local level.

For more information on both Hereditary Spastic Paraplegia (HSP) and/or Primary Lateral Sclerosis, please visit the Spastic Paraplegia Foundation at www.sp-foundation.org/. Thank you!

https://www.facebook.com/groups/470917779663390