By SHERRI WOODBRIDGE The following is an extensive list of currently active (unless otherwise noted) blogs pertaining to Parkinson’s disease. It is intended to provide information for those seeking encouragement, inspiration, information, support and more on their journey with PD and are written by those who understand and are walking the same path.
If you know of a blog or author a blog about PD (caregiving, personal journey with PD, etc) that is not listed below and would like to be a part of this network, please feel free to let me know at parkinsonsjourney@gmail.com.
BLOGS ON PARKINSON’S DISEASE
Currently active as of March 2014
A diagnosis with Parkinson’s Disease in September 2009 at age 80 gave life a new focus and challenge for John Schappi. Finding ways to meet this challenge helped make 2010 the best year of his life. The hope for this blog is that it will be a place where he can connect with others who also are dealing with aging and its afflictions and attractions so that together you can share your “experiences, strengths and hopes.”
This blog is published by the APDA (American Parkinson’s Disease Foundation) Massachusetts Chapter. It is meant to be a series of articles on items of interest to the PD community and posts and do not necessarily reflect the official position of the APDA . Some really good posts.
Making the best of a life with PD
Reflections of an early onset Parkinson’s patient.
A personal perspective on Young Onset Parkinson’s disease, written by Zalamanda who lives in Hampshire, England. She is a mother, a writer, a scientist and an artist.
In the autumn of 2009, she was diagnosed with Young Onset Parkinson’s Disease. Almost a year later, she started this blog.
Although this blog appears to be inactive (as of 4/2014), it still hast seven years of great posts of a Midwestern retiree with Parkinson’s disease.
The decidedly non-frivolous musings of a battle-clever Dystonia damsel – less in distress – seeking a bit of comic relief as she airs her “neurological dirty laundry”.
“Today With PokieToo and Parkinson’s and Acute RA Disease”: A daily journal of my fighting not only Parkinson’s Disease but Acute Rheumatoid Arthritis with My Lord on one side and Patientslikeme.com on the other….with a sense of fun and friendship all around.
Diagnosed with Parkinson’s Disease and Peripheral Neuropathy in 2006, her symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is ESSENTIAL MYOCLONUS. Share her journey – coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!
Dragonflies and Driftwood is the story of two government workers and how they got their wings… Featuring teenagers, titillation, trials, tribulations, and the miracle of love.
From Pekin, Illinois, this blogger was diagnosed with YOPD in January 2011 and determined to not let the disease have the upper hand..
A Pastry Chef’s journey with early onset Parkinson’s, diagnosed at age 26
Writing poetry and stories since she was a child, Elaine has a passion for writing. While the rest of the world snug in their beds, you will find her immersed in words as sleep eludes her due to the effects of having Parkinson’s disease.
An evolution of art. A journey through life with Parkinson’s
An ordinary girl, blessed with an extraordinary life while living with Young Onset Parkinson’s disease.
Living creatively with Parkinson’s Disease using Creativity, Courage and Comedy by Peggy van Hulsteyn
Karyn is from Australia and was diagnosed with PD at age 44. A world traveler, she has ridden through Vietnam, raising funds and awareness for PD.
[INACTIVE] Chronicles of my sometimes funny, sometimes sad, but always enlightening journey of a woman whose husband is diagnosed with Parkinson’s Disease.
Yoga for Parkinson’s disease and Movement Disorders
Living alone with Parkinson’s for over 20 years, this blogger has learned through research, trial and error what works for them. (Alternative approaches)
Peter Dunlap-Shohl authors this blog from Alaska drawing from personal experience and using wit, humor and comics. Great information.
How one Christian woman deals with life living with PD.
Life with Early Onset Parkinson’s and Pain
Parkinsonsecrets.com blog is the Official Website for the book: Parkinson’s Treatment: 10 Secrets to a Happier Life by Dr. Michael Okun, the National Medical Director for the National Parkinson Foundation, as well as the author of several books including Ask the Expert about Parkinson’s Disease, Lessons from the Bedside, and his latest book Parkinson’s Treatment: 10 Secrets to a Happier life due out in 2013.
The purpose of this blog is to create a simple forum for Parkinson’s disease patients to learn and exchange the secrets that can help them to live a happier life
One blogger’s personal experience with PD
Bev Ribaudo, aka ‘Yuma Bev’, shares her optimistic attitude about life with PD, regardless of what’s happening, good or bad. You can also read about Bev’s DBS experience here.
Offers encouragement, inspiration, and support to people with PD and their caregivers. By a person with PD. Good resources.
PD PLAN FOR LIFE – Living well with Parkinson’s Disease
Hope springs from refusing to give up. “Once you choose hope, anything is possible,” said the late Christopher Reeve. Instead of allowing Parkinson’s to limit and define her, Sheryl has found new purpose for her life, done things she never dreamed she’d do, and made friends she would not otherwise have met.
Meet Sheryl and her friend Jean Burns as they share their challenges, triumphs, humorous perspective, and coping strategies to empower others to live well with Parkinson’s.
A Canadian visual artist, radio broadcaster, and writer with PD.
[IRREGULAR POSTINGS]
Diagnosed with Parkinson’s disease before her 33rd birthday, Angie shares her story running, trying to race awareness and funds in hopes of finding a cure for PD.
An insider’s view of Parkinson’s Disease and DBS
“Shaky Paws Grampa” is Kirk Hall, author of Carson And His Shaky Paws Grampa and patient perspective Parkinson’s advocate. His personal experience as a PWP includes support group meetings, two visits to the National Institute of Health’s National Institute of Neurological Disease & Stroke to participate in clinical research studies, participation in workshops at the Southeast Parkinson’s Conference, participation in clinical research studies, and joint presentations with movement disorder specialists to support groups sponsored by the Parkinson Association of the Rockies (PAR) and University of Colorado Hospital. Kirk has been a guest speaker at the Muhammad Ali Parkinson Center in Phoenix and other events in the Denver area. He and his wife of 43 years, Linda, are PDF Clinical Research Advocates.
Andy Daly tries to avoid the subject of life with Parkinson’s disease by trying to reflect on life without Parkinson’s Disease.
One man’s personal experience living with PD
Terri Reinhart, a former kindergarten teacher of 18 years, now enjoys spending time making brooms, felting, knitting, bookbinding, painting, and filling up the house with various craft supplies. She is probably the only woman who has ever asked her husband for 50 pounds of broomcorn for her birthday. She also enjoys writing because, as she says, “It helps me to process all the crazy wonderful things in life without screaming or hitting anything.” Join her on her PD path as she enjoys life to the fullest.
[IRREGULAR POSTINGS (but very good ones)]
Corey King shares his journey of having been diagnosed with YOPD at the age of 47.
The adventures of one family as they homeschool, travel, and explore their way through life… which is made more scenic by the additions of Asperger’s, Early-Onset Parkinson’s, and Gluten Intolerance.
Stan has Parkinson’s Disease (PD) and is a gardener, however he claims he is not an expert in neither. This blog is a little bit about PD and a little bit about gardening. Stan lives in Ottawa, Ontario, Canada
Allison is a “thirty-something girl” who has been a medical anomaly since age 13. She wanted to help people… to really make a difference. So she went to graduate school to become a Psychotherapist and during her second year, she was diagnosed with Parkinson’s disease. The only thing that made sense to her was to give back. She launched a program called “Parkinson’s in Balance” in 2010 with the goal to help her community. Her program offers fitness classes, support groups and social events. You can also follow her advocacy work through her blog. “Don’t underestimate the power of sharing what you do,” she says, as “you might just give inspiration to someone in need of a boost.”
A young woman’s journey as she provides support for her husband with YOPD. [Irregular posting but inspiring.]
Marian shares her life and times dealing with Parkinson’s Disease and everything else, including her art. Marian was also chosen as the winning finalist in the PDF T-shirt contest in 2011.
Written by four authors, WearingOff has helpful information about adjusting to life with Parkinson’s Disease
Bryn’s website is for people looking for information on Parkinson’s Disease and particularly for information on living well with Parkinson’s Disease. The people who blog on this site are advocates of using Laughter, Hope and a Positive Attitude towards managing your condition.
[IRREGULAR POSTINGS]
“Life is either a daring adventure of nothing at all.” Join Bev as she shares her story.
A yogini with a PhD and a passion to help people live well with Parkinson’s disease, Her grandfather diagnosed with PD, Kaitlyn made it her passion to improve the daily lives of people affected by neurological disorders.
With a PhD in Health & Exercise Sciences (specifically, daily physical function in persons with Parkinson’s), she is a Kripalu yoga instructor (Trinity Yoga Centre, Kelowna BC) and value yoga for its ability to improve physical and mental well-being, stress, energy and mood… in ALL people!
Here you’ll find Parkinson’s disease information, yoga inspirations and some of her daily adventures.
Diagnosed with Parkinson’s Disease in 2006 at age 34, this young father is still working full time and raising a young family with him and his wife.
Andrew was diagnosed with Young Onset Parkinson’s Disease at 35 years old. Since then his disease has progressed rapidly, and he has been forced to make major changes to he and his family’s lives as a result.
He is fortunate to be supported by a group of amazing mates and their families, his own extended family and of course his wonderful, patient, loving, supportive, funny, caring and beautiful wife Lynn and their two awesome kids.
No comments:
Post a Comment