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HEALTH AND WELLBEING - PEER SUPPORT - STROKE & NEUROLOGICAL
INDIVIDUALS ORGANISATIONS SOCIAL MEDIA SUPPORT GROUPS
| Jared suffered a stroke in 2004 and this 3-part documentary - presented via You Tube - details his journey in rebuilding his life and love of music and the arts... |
| Have you ever asked, why me? Let my story help you see why a tragic life changing moment, can be uplifting and explores a new view on life. Everything changed dramatically and instantly in May 2007. I was a young, heallthy physiotherapist who ventured off on a snowboarding year overseas and was struck by a severe stroke on my way home. Unlike a predominantly depressing tale you would expect in these pages, in a voice that is clear and articulate on paper, it goes on to tell hilarious accounts of my year off, my travel stories and finally mentions my life as a recently disabled community member. These are stories suppressed for one year and 'Locked In' when I became ill and had all these words inside a fully functioning mind and totally non functioning body.
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| I have had motor neurone disease for practically all my adult life. Yet it has not prevented me from having a very attractive family, and being successful in my work. This is thanks to the help I have received from Jane, my children, and a large number of other people and organisations. I have been lucky, that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope.
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| If I had to offer advice to anyone thinking about a new career, I would say consider tech. But also, if you can, go traveling. |
| The Children's Tumour Foundation of Australia is a not-for-profit organisation dedicated to providing information, resources and support services to children, their famililes and adults living with neurofibromatosis (NF), a term for three distinct disorders: NF1, NF2 and Schwannomatosis. CTF also raises funds to support promising medical research aimed at finding new treatments and ultimately a cure for NF. |
| The GBS Association of NSW is a registered charity that provides information and support to those affected by the Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) and related conditions. |
| ALS and MND are abbreviations for Amyotrophic Lateral Sclerosis and Motor Neurone Disease respectively. The International Alliance of ALS/MND Associations was founded to provide a forum for support and the exchange of information between the worldwide associations. The Alliance functions primarily as a forum for the exchange of information on all aspects of the disease, research and management of care as well as the provision of support through networking and sharing the development of ideas on good practice. |
| The MND Association of Australia provides information and support to people with MND, family members and carers. There is a link to each state & the ACT. Some services include regular telephone contact and home visits (if wanted), and literature to assist in coping with MND on an everyday basis.
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| MS NSW/VIC informs people with multiple sclerosis how best to achieve as full and healthy a lifestyle as possible while managing the symptoms of MS, raises funds for the provision of services, programs and research, educates the community, and liaises with government and other bodies on MS-related issues.
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| Lara had suffered a rare and complex stroke called “Locked in Syndrome” which meant that all voluntary muscle movement was paralysed, but her mind was perfectly fine. Initially, she could only communicate by blinking. “Think petrifying, think enormously challenging, think panic, think extreme frustration. My coffin was my body.” Most of Lara’s Gondola is about how she faced this enormous challenge and the support she received from family, friends and health professionals. The story however is not all gloom and depression, but rather one of hope, optimism and is often very amusing. “I now have greatly progressed. I now eat everything, drink anything, am continent can stand with help and most productively, type on a normal laptop. I am still in an electric wheelchair. I found a freedom in the expression of writing and the story turned into an autobiography.” And, what a story it is.
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| The Diving Bell and the Butterfly is the remarkable true story of Jean-Dominique Bauby (Mathieu Amalric), a successful and charismatic editor-in-chief of French Elle, who believes he is living his life to its absolute fullest when a sudden stroke leaves him in a life-altered state. While the physical challenges of Bauby's fate leave him with little hope for the future, he begins to discover how his life's passions, his rich memories and his newfound imagination can help him achieve a life without boundaries.
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| If you are reading this there is a good chance you or someone you love has learned that there is a thing called Guillain Barre' Syndrome. The acute type is sudden and often devastating to begin with but with treatment usually is arrested and with careful slow rehab will usually just be a bad memory in a year or so. The other is Chronic Inflammatory Demylating Polyneuropathy or CIDP This type usually takes longer to disable you and tends to hang around for years or just not go away. It can be managed with different types of medication and while you may not be 100% you can live a fairly normal life. My hope is that on this site you can find some answers and other sites all full of good friends willing to sit down and answer your questions and help you and your loved ones cope with this strange disorder. Please feel free to contact me . |
| This is the web site of the GBS Support Group. We are a registered charity based in the UK that offers support & information to those affected by Guillain-Barré Syndrome, CIDP & other dysimmune neuropathies throughout Britain & Irland. |
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