Learning more about living with HSP

A look at online resources


Everyone knows that there’s a ton of information available on the internet.  Here are just a few of many sites that may be useful to HSPers, their carers and family members. Some information comes from other neurological organisations and while it may not specifically be about HSP, it is often relevant, pertinent and excellent information.

UCP SmartBrief

United Cerebral Palsy of the USA (UCP) partners with SmartBrief to produce a weekly e-mail newsletter that brings important and timely news stories focusing on issues of transition for people with disabilities, advocates, UCP affiliates, and anyone looking for disability news and information, directly to subscribers’ inboxes. The subscriber list for this publication is entirely opt-in, so you will need to sign up to receive the brief.

Limitless, My Child Without Limits Newsletter

Enjoy this newsletter geared toward parents and caregivers of children with disabilities. To join the MCWL community or for more information, visit mychildwithoutlimits.org.

Brave Kids Newsletter

Each month Brave Kids sends out an e-newsletter featuring news you can use as your child grows through childhood into teenage years, and much more. To join the Brave Kids support community or for more information, visit bravekids.org.

Learn more about Healthy Lifestyle, about caregivers and care recipients,  Wheelchairs, Self Esteem, Catheters, Right Wheelchair or Sex via The National Spinal Cord Injury Association’s (US) webinars. Go to: http://www.spinalcord.org/webinar-archive/

Learn more about Travel Safety, Quality of Life with iPad Technology or Wheelchair Modification to improve Quality of Life via ALS Association’s (US) webinars. Go to: http://www.alsa.org/als-care/resources/webinars.html

To learn more about Physical Therapy (physiotherapy) and changes with aging; the importance of exercise; research showing positive things happening in the brain with exercise, or taking care of the caregiver via Parkinson’s Disease Foundation’s past seminars, go to: http://www.pdf.org/en/online_education_past

To learn more about healthy living, from a previous Olympic athlete who has Parkinson’s Disease, including a lot of good data about how helpful exercise is, go to: http://www.davisphinneyfoundation.org/living-pd/live/exercise/

To learn more about The Art of Moving (Parkinson’s Disease) look for “See A Class In Action” at http://www.johnargue.com/index.html

To learn more about how to talk with children about your condition, and other downloadables from MS Australia, go to:  http://msqld.org.au/msresources/category/5-official-documents

To learn more about RLS, Creating a care notebook, Botox info or, from past webinars: “It’s about teamwork. It’s about communication” – Coordinating with Your Healthcare Team, go to: WeMove.org

To learn more about Canes to Wheelchairs:  Mobility Alternatives (PDF), Fire Safety for Wheelchair Users (PDF) or, what might be a very useful publication for groups not sure how to interact around disabilities, Disability Etiquette (PDF).  All can be viewed and downloaded for free at  http://www.unitedspinal.org/disability-publications-resources/disability-publications/


There are some interesting Youtube videos including:

MS (Multiple Sclerosis) Doesn’t Have Me

See:  http://www.youtube.com/watch?v=jKmqKiShfg0

Bladder Health Matters

See:   http://www.youtube.com/watch?v=oN8zT9sAeg4

The Theracycle

See:  http://www.youtube.com/watch?v=1aQDkjT1kBo


There are numerous free, high-quality and appealing, open online courses that have the potential to revolutionize learning.  Though it may be hard to pick out the information helpful specifically to HSPers, this could be a perfect way to learn, if going to class is not easy or possible.

Khan Academy – with thousands of free online lectures (including Intro to Exercise, 11 Major Muscle Groups and Anatomy of a Neuron).  See    http://www.khanacademy.org/

Coursera – a social entrepreneurship company that partners with the top universities in the world to offer courses online for anyone to take, for free.  See    https://www.coursera.org/

MIT OpenCourseWare – Massachusetts Institute of Technology’s web-based publication of virtually all MIT course content is open and available to the world with over 2,000 courses.  See http://ocw.mit.edu/index.htm



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