March 31, 2021 at 6:31 pm #20312Mary Beth SkylisModerator
Whenever I’m navigating tough moments in my life, I throw myself into research. I learn everything I can about my enemies or the obstacles I’m facing. When it comes to Parkinson’s disease, I like to approach it in a similar manner. I want to know everything there is to know about the illness. And I’m always looking for good sources. Do you have any book recommendations? What about movies or podcasts?
April 1, 2021 at 2:33 pm #20476Charles SchillerParticipant
Get “Every Victory Counts” from the Davis Phinney Foundation for Parkinson’s. It’s the best!
April 1, 2021 at 2:52 pm #20478Jack edmonstonParticipant
The New Parkinson’s Disease Treatment Book” by PD Expert at the Mayo Clinic seems to have a different take on what causes many PD symptoms. I have been reading about insomnia and night sweats and he seems to think very differently than my docs at Mass General Hospital about both cuase and treatmnent.
April 2, 2021 at 11:26 pm #20492RobertParticipant
Good evening all.
Regarding PD books.
If there is a book out there that is available to us consumers about Parkinsonism, Parkinson’s Disease, MSA, Lewy Body Dementia, or Parkinson’s Disease with Dementia that I have not read it is only because I don’t know about it.
This list may indeed be a clue that at not quite three years years in, I have skipped the honeymoon period and am now trying to figure out what the heck PD road I have taken! I clearly missed the road signs when I made some of the turns on my journey. I am currently enjoying a few good hours today as I write this. Nevertheless, when asked, I continue to say I am feeling marvelous. Quite the thing, this PD isn’t it?).
In my opinion, the most thoroughly comprehensive, yet easy to read, books about Parkinsonism or Lewy Body Dementia are by J. Eric Ahlskog, M.D. Ph.D., who is a clinician at Mayo Clinic in Minnesota. They so remind me of what I found to be the two best science explanation books I read when I was younger, General Chemistry by Linus Pauling from about 1970 and Understanding Physics by Isaac Azimov from about 1980. Both books were amazingly comprehensive, but were written to be read and understood by anyone with a basic education. Dr. Ahlskog’s books are the same.
I think Dr. Ahlskog’s books may have had several editions and may have had different titles and I just can’t find them right now on my Kindle reading device. But I am sure anyone can find them by a search of the author’s name. He is an old guy, in his 70s I think, but still sees patients the last I heard.
Best wishes to all on this PD journey.
And a most Happy Easter to all.
PS. Pardon any typos. Part of my current PD issues are that it took me a very long time to type the above and to then edit it for the dozens of typos and syntax.
April 7, 2021 at 10:59 pm #20504James CarberryParticipant
One title by Dr. Ahlskog is The New Parkinson’s Disease Treatment Book, subtitle Partnering with Your Doctor to Get the Most from Your Medications, 2nd Edition, 2015, Oxford University Press. I bought it in hard copy from Amazon, and agree with Robert C.’s endorsement.
April 8, 2021 at 8:56 am #20503Ellen RothParticipant
Thanks, Robert! I’m curious as to what books covering MSA you’ve read…
April 8, 2021 at 4:32 pm #20508Daniel BestParticipant
I’ll add to the chorus of recommendations for Dr. Ahlskog’s book. I’m impressed by the breadth of the medications he discusses in the book.
April 8, 2021 at 5:56 pm #20510BethParticipant
I just got this book out of the library today. It’s called “How to Be Sick” by” Toni Bernhard. The subtitle is “A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. My dad is reading “How to Wake Up; A Buddhist-Inspired Guide to Navigating Joy and Sorrow” also by the same author. He said it’s one of the best things he’s read in a long time.
April 9, 2021 at 8:39 am #20511Marla WiseParticipant
“Every Victory Counts” was so very informative for me and I often refer to it as new questions arise. I am curious about Dr. Ahlskog and put a hold on his book from our library. Am anxious to read it! Thanks for sharing!
April 17, 2021 at 3:43 pm #20559Jeffrey DavisParticipant
Reflections on a Simple Twist of Fate: Literature, Art, and Parkinson’s Disease is a different and extraordinary self published book by Dean Scaros, a PD patient himself. It explores the multitude of emotional and psychological responses of humanity to PD through the eyes of world literature and art. This book is scholarly yet easy to read. It is thoughtful, insightful and quite uplifting. The book consists of about 25 short chapters each of which can be read in any order. The reader will choose based on the chapter title that draws at the moment. It was actually created to be read in a doctors waiting room. Available on Amazon.
April 23, 2021 at 2:26 pm #20580ShellyParticipant
‘What Doesn’t Kill Us’ by Scott Carney.
April 27, 2021 at 2:32 pm #20609STEVEN OPPENParticipant
I recommend “Ending Parkinson’s Disease” by Dorsey, Sherer, Okun and Bloem.
April 27, 2021 at 4:06 pm #20613connieParticipant
I also recommend ENDING PARKINSONS DISEASE —
clear overview of research on pesticides and toxins and how they trigger genes.
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