Two weeks ago, I had my very first telehealth appointment with my neurologist of about 8 years. I had spent at least a half a dozen years of advocating on Capitol Hill to make telehealth available (attempt to get it covered by insurance as well) to the public. Telehealth has become a reality and a viable, valuable, convenience –but also a solution for meetings! For some of us, telemedicine has pulled back the curtain on a new technology with unlimited potential and opportunities. Telehealth is becoming a necessity and not just a mere luxury. Right now, this new technology is great during this pandemic, but it could change back, without government legislation.
Thanks to the improvements in technology like band-with, compression, fiber cable, security, improved software, and the pandemic forcing us to drop or ease regulations, the current crisis has made a rapid need for this amazing service.
Dr. Ray Dorsey M.D. MBA is the David M. Levy Professor of Neurology and Director of the Center for Health + Technology at the University of Rochester and has been an active and longtime proponent of telehealth and telemedicine. As longtime Parkinson’s advocates with the former Parkinson’s Action Network (PAN), my wife, Angela, and I would bump into Dr. Dorsey with some frequency, over the past ten years. Ray has been a visionary of this technology and of its’ potential. Now telehealth needs to become a legal standard that we can all have access to, from now on.
My neurology appointment was made for 4:30 PM but I was asked to be on the site at 4:00 PM. I submitted my follow-up documents before we met, to save time and confusion. Due to an error with the submit button, I had to handwrite my documents, scan them, and send them to their office.
I really preferred not having to race through rush hour traffic and the tension of making it there on time. Using my kitchen as a waiting room was quieter than the doctor’s waiting room, was more comfortable, was more sanitary, was less stressful, and I had periodicals from the last decade. But seriously, the whole process of going online reduced wasted time, lowered anxiety, lowered stress, reduced exposure to any ill people, plus, we did not have to expend gasoline to drive there.
A bubbly and engaging nurse asked me a few questions, about fifteen minutes prior to the actual appointment time. When we were done, I was told the doctor would be right in. I was reminded of the old days. I waited. Remember waiting for your doctor? Of course, you do!
The wait was brief, and my doctor was terrific. I had checked my blood pressure just before the call, and I scored a calm 120/80. The appointment went smoothly, and we agreed on my regimen.
There was no flexibility test or a fall test. He watched me walk. He filled my prescriptions. As any doctor visit goes, I have got to tell you, I wish, and I hope that they are all like that one, in the future! There is a big take away to remember: Tell your elected representatives how important telehealth is to you!
I saw Ray Dorsey in a Zoom meeting recently, discussing the new book, Ending Parkinson’s Disease, which he co-authored. I asked Dr. Dorsey what his thoughts were on the rapid burst of telehealth popularity. His remarks were, that if you like using telemedicine for physician visits, to tell your representatives, so that we can keep this most beneficial technology. Tell your Senators and Congress people that you want Medicare coverage for telehealth to keep telehealth as a medical option and to vote it into a law!
Telehealth has the potential to make doctor visits smoother, safer, and more efficient. This technology is an option that we need.
UPDATE 07/23/18 – I am happy to report that The Animated Mind of Oliver Sacks project on Kickstarter met and exceeded it’s goal by nearly 25%!
I am so glad to see the support and deep interest in Dr. Sacks’ work continues on! I can’t wait to see the release of the film!
In the medical world, it is a rarity to uncover a medical anthropologist and an ambassador of compassion who writes with humor, tenderness, truth, sensitivity, and frankness. Dr. Oliver Sacks was all that and more. To this day, I don’t know of a greater contributor to the world of Parkinson’s disease. He was a tenacious advocate and Levodopa researcher, as documented in his book Awakenings and then movie starring Robin Williams. Over 50 years later, Levodopa remains the gold standard drug for Parkinson’s patients.
On a personal note, I started taking Levodopa in 1991, had I not had access to this medicine, I can only guess what my life would look like. This life-changing drug has given me the ability to move, to speak, and to function. Like millions of Parkinson’s patients around the world, I am and will be forever in Dr. Sack’s debt for the gift that he has given me and the Parkinson’s community.
Oliver Sacks left us in 2015 but his numerous books, writings, lectures, and interviews live on and on. Now, thanks to the passion and vision of documentary film-maker Dempsey Rice, comes The Animated Mind of Oliver Sacks. There is just over two weeks left to complete this important Kickstarter campaign and bring over ten years of exclusive interviews to the big screen. Through the beautiful medium of animation, Dempsey and her team will show us Oliver’s refreshing and revealing outlook on medicine and compassion, music, gratitude, and the down to earth attitude that made Dr. Sacks so revolutionary.
Dr. Sacks connected with his patients. He deeply cared about people and their care. Oliver Sacks understood the uniqueness of every patient and took a fresh approach to the doctor patient relationship. Both a compassionate neurologist and a tenacious investigator, Sacks believed that the patient should be more empowered and in greater control of their care—an uncommon and somewhat controversial opinion for many physicians. You can hear his compassion in this quote:
“My note was a strange mixture of facts and observations, carefully noted and itemized, with irrepressible meditations on what such problems might ‘mean’, in regard to who and what and where this poor man was – whether, indeed, one could speak of an ‘existence’, given so absolute a privation of memory or continuity.”
― Oliver Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales
Dempsey says, “Animation is a great art form.” The medium of animation adds a whole new dimension that will elaborate on Sacks’ insights. Meshing Sack’s spoken words and powerful visuals of the stunning animation enhances the thoughts and concepts that are discussed onscreen. Through the power of film, we will see Dr. Oliver Sacks in what I believe to be a memorable moving documentary that encapsulates the immense impact that he had and continues to have on medicine, our medical care and our perception of medicine in general.
I think that this quote summarizes Dempsey’s passion, drive, and appreciation for Sacks’ works: “Throughout our time together, I was consistently awed by Oliver and his deep compassion for all living things. His unfailing curiosity drove him to explore the magic of how our brains work and delve into the extreme joys and sorrows that come with human existence,” said Rice. “My hope is that this film inspires new insight and deep compassion for the human experience, in addition to celebrating Oliver’s irrepressible enthusiasm for, and curiosity about, the human mind.”
Upon completion, Dempsey hopes the theatrical release will be available in early 2020.
I encourage you to learn more about Oliver Sacks and Dempsey Rice’s film, The Animated Mind of Oliver Sacks at the following links:
Kickstarter campaign page: http://bit.ly/animatedmind4,
or Instagram: https://www.instagram.com/oliversacksfilm/
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Library Program Offer
I am so thankful to you, my readers that I would like to extend an offer. A year ago, I donated 5 copies of my book to the Fairfax County Public Library. If you would like to make this book available to your local library, please have your library contact me or send me their contact information. This is a wonderful way to share important information!
If you would to like your library to participate, please have them contact me by sending the librarian name, library name, phone number, email, and address of the library. Thank you for your interest!
In case you didn’t know, April is Parkinson’s Disease Awareness Month. Just in time, I am excited to tell you that in the next few weeks an audio book version of my book, A Soft Voice In A Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease will be released for sale on Itunes.com, Audible.com, and Amazon.com. The book is read by Doug Gochman, a very talented voice actor. Listening to the book provides a whole new perspective and reveals even more from reading it. As the author, I had no idea that hearing the words read back to me could be so powerful. Watch for the upcoming sample, soon to be released on www.asoftvoice.com.
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If you are a loyal reader of this blog, I apologize. Updates to A Soft Voice have halted briefly while I prepare to launch my first book. The book, A Soft Voice In A Noisy World: A Guide To Dealing and Healing with Parkinson’s Disease is almost here. I am so excited about the finished product. I wanted to share the first two chapters with you. My book contains over 20 years of lessons, tips, and stories about improving my life with Parkinson’s disease. To read some of the book, click here.
It has been a long and winding road to get this project done. Watch this site to keep informed on the release date and how to get your copy of the paperback or ebook. Thank you for your support!
Tags: 2012, A Soft Voice In A Noisy World by Karl Robb, author, blog, blogger, book, brain surgery, cure, DBS, Disease, doctor, doctors, Health, illness, lecture, media, medicine, nature, news, patient, PD, positive thinking, reiki, speaker, stress, support, wellness, writer