Neurology News: Having Their Say: Patient Bloggers

Neurology Now
December/January 2013
Volume 9(6)
p 14
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While your doctors can give you information and guidance about your condition, they're not always the best source for practical advice. Patient bloggers offer that in spades as they chronicle their own journey with neurologic disease—sometimes funny, sometimes painful, but above all else, familiar.

OFF AND ON Cartoonist Peter Dunlap-Shohl chronicles his life with Parkinson's disease.

Click here to enlarge

We tried to find blogs that are well-written, honest, and responsible in the way they handle medical information.

ALZHEIMER'S DISEASE/DEMENTIA

Two helpful and well-written Alzheimer's disease (AD) blogs for caregivers are the Alzheimer's Front Row (alzheimersfrontrow.blogspot.com ) and its companion website, Alzheimer's Reading Room (alzheimersreadingroom.com ). They are written and curated by Bob DeMarco. DeMarco quit his job to move to Florida to care for his mother, Dorothy.

EPILEPSY

The Epilepsy Warriors blog (epilepsywarriors.com ) is written by a woman named Niki, whose son, Cole, has epilepsy. Niki brings passion and extensive knowledge of resources to her blog in order to help guide other parents of children living with epilepsy.

Living Well With Epilepsy (livingwellwithepilepsy.com ) is by writer Jessica Keenan Smith. Having lived with epilepsy for more than 25 years, she has a great deal of experience to share.

MIGRAINES

Kerrie Smyres launched The Daily Headache (thedailyheadache.com ) in 2005 to share information and support with other migraineurs. Smyres' blog follows her efforts to lead a normal life in the face of daily, often debilitating headaches.

MULTIPLE SCLEROSIS

Managing MS: Straight Talk From a 31-Year Survivor (debbiepetrina.authorsxpress.com ) is Debbie Petrina's blog with advice for everyone—from the newly diagnosed to people like her, who have been living with MS for many years.

NEUROPATHY

One of the most popular blogs about peripheral neuropathy is Dean Lewis' Living With Peripheral Neuropathy (livingwithperipheralneuropathy.com ).

Bryan Hinkle, who has chronic inflammatory demyelinating polyneuropathy (CIDP), blogs about his participation in a clinical trial of stem cell transplantation for CIDP at bryanhinklesct.blogspot.com .

PARKINSON'S DISEASE

Shake, Rattle and Roll (katekelsall.typepad.com ), from blogger Kate Kelsall, is full of humor, honesty, and joy. Kelsall has lived with Parkinsons' disease (PD) for 15 years.

Off and On (offandonakpdrag.blogspot.com ) is a blog from cartoonist Peter Dunlap-Shohl. He offers valuable information, support, and a sense of humor.

STROKE

The Stroke Survivor Blog (strokesurvivorblog.com ) is by Kathy Boncher, whose husband suffered a stroke in 2008. Boncher details their journey together as he fought back to recovery.

Rocky Mountain Stroke Survivor (rockymountainstrokesurvivor.com ) is written by a young mother about her fight to recover after her stroke. Its power lies in its honesty.

Andrea King Collier

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