Posted - December 2011 in Living with HSP - Management & Treatment News
Read about a new information resource on HSP; an HSPer’s review of ‘Winning the Disability Challenge’; a magazine dedicated to wheelchair users; the latest newsletter from the SP Foundation in the US; a snow skiing HSPer, and a website for rare diseases.
New Source of 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: [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
PO Box 8126
Gaithersburg, MD 20898-8126
Fax: fax to +1 301 251 4911
Winning The Disability Challenge
A Practical Guide to Successful Living
By John F. Tholen, Ph.D. (2008) New Horizon Press, Far Hills, New Jersey USA ISBN 13: 978-0-88282-290-7 ISBN 10: 0-88282-290-X
As an HSPer, I find this book inspirational. The author, Californian clinical psychologist Dr. John Tholen, was born with a disability (having one short foot missing all 5 toes) and as an adult he injured his back, requiring major surgery and resulting in chronic pain and further limitations – and increasing his understanding of disability. The author has been treating the occupationally disabled for over 25 years.
The book starts with some logistical information for the newly handicapped that is mainly aimed at US readers. He doesn’t waste much time before he leaps to the heart of the matter – that we have many options and can create a life we’re thrilled with!
This author says things we don’t often hear about disability, like this, “there are always other routes to explore, some of which may be even more rewarding than the ones we were on.” I find this an exciting idea. It can be easy to look at HSP negatively, but Tholen provides a way to see things differently – to make the most of our lives even with our disability. He helps us understand how to do this with exercises (in the Shifting Into Gear chapter) and real life examples of handicapped people who’ve triumphed over their limitations.
This is the challenge – as we become disabled we are presented with a choice: Remain focused on what we have lost, and become resigned to feeling useless and helpless or face the challenges posed by disability, actively pursue other ways of feeling productive and attempt to carve out a rewarding life experience. He proposes the idea of using our disability as a turning point to “find the inspiration and energy to strive forward… and explore new possibilities”. The book lays out a detailed and practical road map for meeting personal challenges on a day-to-day basis and the recommendations are backed up by concrete examples from the author’s practice, with actual results from patient case histories.
He talks about choices we make and includes several pages of comforting thoughts about disability. I can imagine reading through these pages in future when HSP gets me down.
The large chapter on relationships has information that would apply to most people (like The Ingredients of a Successful Relationship) and more importantly he includes bits about forming stronger bonds rather than “dumping” our frustrations on others because of our disability. He writes about: Loving Communication, Treating Each Other Like Adults, Trying to Resolve Conflicts and Adjusting to Sexual Changes and When to End a Relationship.
From Author’s Note at the beginning of book:
“It is my hope that through this book, I will be able to share information and ideas that can provide some relief to the many individuals who each year become overwhelmed by the stresses created by occupational and physical disability. Although it may be difficult to see from the midst of the crisis, it is almost always possible to make our lives better than had we never become disabled.”
Did you read that last sentence? … “It is almost always possible to make our lives better than had we never become disabled.” That’s exciting!
New Mobility – a magazine for wheelchair users
New Mobility http://www.newmobility.com/ encourages the integration of active-lifestyle wheelchair users into mainstream society, while simultaneously reflecting the vibrant world of disability-related arts, media, advocacy and philosophy. Our stories foster a sense of community and empower readers to:
- participate in all areas of life, including education, work, love, sex, home ownership, parenting, sports, recreation, travel and entertainment
- be informed of and take charge of health concerns
- obtain appropriate technology
- assert legal rights.
Award winning… Launched in 1989… Full color glossy magazine wheelchair lifestyle publication. 1 year Online Only (12 issues): $14.95USD
Synapse, the Autumn 2011 edition of the newsletter of the SP Foundation in the USA, has an in-depth look at mental health:
A newspaper article on an HSPer who’s hoping to qualify for the winter Paralympics ski team in the USA:
PatientsLikeMe – a health data-sharing platform
PatientsLikeMe http://www.patientslikeme.com/ was formed in 2006 by three engineers, two brothers and a long time friend of a man who at age 29 was diagnosed with ALS. Inspired by the search for ideas that would extend and improve his life, the cofounders built a health data-sharing platform that can transform the way patients manage their own conditions, change the way the industry conducts research and improve patient care.
This website has over 116,000 contributing patients with over 500 medical conditions including HSP. Patient data shows current and history of treatment, scale of progression, symptoms and more. You can choose to share your own relevant data. Technology is in place to make it easy to share, find and learn from others – you decide if your data will be openly available or available just to other PLM contributors.
Currently the number of HSPers on the site is around 40. Here’s a story about the potential of a medical group communicating and using this technology. In 2008, a small Italian study was published suggesting that the drug Lithium could slow the progression of ALS. In response, hundreds of members of PatientsLikeMe began taking the drug and using a new tool and a matching algorithm to conduct a patient-led observational study. The results of that study, published in Nature Biotechnology, show that we were unable to replicate the promising findings of the Italian group, but that PatientsLikeMe may provide a useful way of conducting observational studies faster and cheaper than existing trial methods.