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My First Online Doctor’s Visit – TeleHealth Makes Sense for Less Stress and Lower Expense

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.

Does Masking Have A New Meaning?

Mask Up!

There is a common, unfunny, and overused joke about not playing poker with people who have Parkinson’s disease because many of us have reduced facial movement and it can be hard to read our expressions. This is masking, as I understand it. Sometimes the muscles for smiling just do not work well. Speech clarity and projection are vital to being understood. Being heard under a cloth mask when one has voice issues makes life frustrating for both the speaker and the listener.

Now, to make matters more of a challenge, add practicing social distancing, having a problem with your speech, having a softer voice, and placing a mask over that soft voice.  For someone with Parkinson’s disease, the combination of muffling the mouth, relying on just the eyes can be deceptive, and poor vocal projection, all add up to not being easily understood and worsens communications.

For some of us with Parkinson’s disease, our eyes are not as expressive or fluid as we would like, added to the tightening of facial, neck, and jaw muscles. Dry mouth, too much saliva, swallowing issues, and dental problems can all contribute to someone with Parkinson’s speech challenges.

Sight and Sound are Covered

Communication in a marriage is crucial and in this new COVID-19 pandemic of being home sequestered, the sharing of information is close and continuous. To maintain human interaction with family and friends by phone or new social technologies, takes a little practice.

Be sure that while under the fabric facial mask, (if your jaw is ok), to move your mouth, lips, and jaw. Exercising the facial muscles can add to your expressions. Do not just hide your face under the mask. Remember that you are going to have to speak louder, slower, and clearer, especially, with a mask covering your mouth. One more challenge to tackle. We can do it!

A Partial History in Tees

Almost every Parkinson’s disease conference that I have ever attended, over these 30 years of going to symposiums, lectures, and meetings, almost all of them had a an associated tee shirt. Some of my shirts probably got worn out and some may have gotten lost, over time, but here is a smattering of the events that I either had some affiliation with or attended. It’s a tribute to past events and friends-some gone, but not forgotten.

I thought this video might be a good way to commemorate Parkinson’s Awareness Month. Old tee shirts can hold a lot of memories!

Please enjoy this video to see my collection of tee shirts that I picked up from various Parkinson’s gatherings. Just click this link to see the video: https://gopro.com/v/JbDZkdva0MWvg

 

 

Losing An American Treasure—The Loss of John Prine

The 2020 pandemic has robbed us of my favorite living musician, the great John Prine. I have seen John Prine at least a half dozen times, bought most of his albums, and tried to spread the word of his timeless music. I never left a John Prine concert disappointed. Prine wasn’t just an outstanding performer but known as one of the best song writers by his peers.

A former mail carrier and song writer in Chicago, discovered by Roger Ebert and help from Kris Kristofferson, at different times, Prine gained recognition and a recording contract in 1971. Although Prine’s songs didn’t make it to major “pop success”, he had a large following and continued to successfully sell out concert venues and release albums. He had a large and loyal following of fans!

Performer and Songwriter

Songs like It’s A Big Old Goofy World, Paradise, Flag Decal, Sam Stone, Everybody, Dear Abby, Let’s Talk Dirty in Hawaiian, and I Guess They Ought a Name a Drink After You, are but a few of Prine’s tunes that will keep you humming. His music style of folk, country, rockabilly, blues, and jazz is one not to be replicated. We have lost a treasure.

Artists like Johnny Cash, Kacey Musgraves, Bonnie Raitt, and numerous other artists performed John Prine music or paid tribute to his remarkable works. Prine was the first entertainer to play at the Library of Congress and received numerous accolades for his music and for his contribution to the music industry. At last, John Prine was recognized by the industry that his fans had recognized for so long.

I read somewhere, years ago, that John Prine would write a song a day. He had many different sounds as the tastes for music changed through the decades. His smooth smoky vocals (altered over the years from his bouts with cancer, yet he sounded great), his catchy rhymes and phrases, and his melodic guitar chords made for pure genius! If you aren’t familiar with John Prine and you love music, I encourage you to discover John Prine and add him to your playlist, today! This is a huge loss to the world of wonderful music. Celebrate the life and music of John Prine!

A Very Different Parkinson’s Awareness Month!

In just a matter of days, our world has been turned upside down and around by an invisible and deadly invader. Many of us have turned to an online life of Zoom or Facebook Live. Whether it is for schooling, our occupation, support, workouts, weddings, births, or even funerals. Our life, from start to finish, has become a digital experience.

If we were a lonely planet before the COVID-19 virus’s rampage, our sequestering for our health doesn’t help our mental state. Socializing and getting to know our neighbors is improving and uniting us in ways not seen since WWII.

April is Parkinson’s Awareness Month! As COVID-19 continues to impact the world, it frightens me that all of us who have Parkinson’s disease are more at risk to the virus. Many of us have weakened immune systems and are susceptible to respiratory complications.

 

This Parkinson’s Disease Awareness Month Has Changed

This is a Parkinson’s Disease Awareness Month like no other! As our message of awareness may get muffled in the shadow of the threat of this virus, it’s important to continue to share information. Normally, awareness about Parkinson’s would be focused on informing those unfamiliar with Parkinson’s about:

  • History of Parkinson’s

  • Diagnosis

  • Prognosis

  • Parkinson’s Medications

  • Research or Therapies

Rather than offer an awareness about Parkinson’s, we should consider a more timely tact to provide an awareness about protecting ourselves from this dangerous Coronavirus! Please stay strong and maintain your physical and mental health by staying active. So, here are a few sites to keep you informed and up to date:

Please don’t take unnecessary risks. Be safe! Be careful! Be Well!

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