Category Archives: Education & Support

The New and Improved Tools & Resource page!

Knowledge is Power - A Soft Voice.com

I am happy to release a brand new resource page, chock full, of updated Parkinson’s disease related links, to blogs, websites, podcasts, and more – all in one convenient location. Better navigation makes it easier to find just what you are looking for. I hope this page assists you in finding helpful information on Parkinson’s and living well! Just click on the Tools and Resources button.

Stay informed and aware of what people with Parkinson’s disease are writing about, how they are dealing with the illness, and find information that may inspire or educate. Gain perspective and get unique views from people from all over the world. Broaden your outlook and see what people are working on. See how some are overcoming their symptoms and are living well with Parkinson’s.

The more you know about your illness, the better prepared you can be. Being aware and proactive may help you to take action towards improving your condition. Information is crucial to making health decisions and understanding options. There is so much to learn and share.

I believe that the real experts on illness are the people who live with illness, everyday. There is no denying the valuable contribution of the medical community, but on a daily basis, daily living is most applicable to those who are living it.

See the list of Parkinson’s organizations and keep in tune with programs and educational webinars that cover a wide range of informative topics that relate to Parkinson’s disease. Each organization offers a unique wide or regional focus that may be applicable to your needs.

I have always thought that the more tools that are in your toolbox, the better. Having a choice far outweighs a lack of options. Widening the availability of our options allows us to make more informed decisions.

Avoidance or turning a blind eye to your illness may be detrimental to your getting better. Learning about unfamiliar options can be empowering and offer comfort.

Mask It

Once again, this pandemic shows that without severe caution and diligence, it will escalate with ease. This virus is not a joke and it is not just going to go away, like magic. People all over are dying, many have died due to the stubbornness and attitude that wearing a mask, or not, is about rights. Rights are about the common good, and right now, the common good for all of us is to avoid the spread of the coronavirus, to anyone. It is not just about you. We are all in this fight, together. Wear your mask for everyone’s sake!

The number of infected and deaths from COVID-19 are staggering. If a mask means life or death, there really is no logical excuse for not wearing one.

Feel free to share this graphic on social media or with anyone you feel is on the fence of whether to wear a mask or not. If you expose someone who has a chronic health condition to the virus, you are putting them at great health risk.

Please have a safe and masked 4th of July!

A Soft Voice Chosen by Healthline.com as One of the Best Blogs on Parkinson’s Disease

Thank you @Healthline for including us for this distinct honor and acknowledging our work!

Congratulations to Allison at Perky Parky, Sharon at Twitchy Woman and my peers at @ParkinsonDotOrg @CureParkinsonsT @DavisPhinneyFND @shakeitupaust @parkinsonstory on this accomplishment.

To be included with such well respected peers is a true honor. You all make huge contributions to our #Parkinsons community that are so life changing. I am honored to be in the company of these influencers on Parkinson’s disease.

Many thanks to you, my readers for making this possible and your continued support. I hope that I can provide you with positive and useful information. My goal is to empower and to offer a fresh perspective at how we handle and perceive our chronic illness.

ZOOM Is Changing The Way We Communicate

I really like using Zoom for meetings, but a month ago I saw what can happen when security measures are not taken. I was Zoomed.

Illustration of computer with multiple human likenesses.
Image: istockphoto.com

 A month ago, I had a day that would unexpectedly burn disturbing images in both my brain and my wife’s brain. I was attending someone else’s Zoom social get together. It is difficult to forget. It was a shock.

What began as a charming get together of sharing and caring amongst people with Parkinson’s disease and their caregivers/carepartners, did not end well. It turned into an invasion of indecency and pure smut. A hacker’s prank or an experiment in disruption, spoiled the event for all who were involved. This was a gross abuse of technology.

When used properly and measures are taken, Zoom calls can be very helpful, enjoyable, and productive events. Follow these suggestions and keep your software up-to-date to keep out uninvited participants.

If you or your group use Zoom for a meeting, a get together, or lectures, make sure that you take caution and follow some of these precautionary steps to protect from being interrupted by unwanted attendees, to your event.

Zoom Hints For Attendees/Participants:

  • Use the “art of the pause” when participating so others can respond to your comments.
  • Be patient for speakers who may speak more slowly.
  • Make sure you upgrade your Zoom application to the latest version to get important updates.

Zoom Hints For Hosts:

  • Always password protect your meetings.
  • In your meeting setup, turn off screen sharing for participants as a security measure.
  • Use the waiting room so you can screen who is admitted.
  • Have attendee’s audio and video muted as they enter the room, so it is not distracting. Muted audio can help a lot for those late arrivals who might interrupt a meeting in progress.
  • Always greet your attendees as they enter and say goodbye when they leave.
  • Make sure you have the latest updated version of the Zoom application.

Informative Zoom Videos to Watch:

Share these resources with anyone you know who is a Zoom user or moderator. One of these sources may help keep you and your attendees stay safe.

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.

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