Category Archives: Health

Change Brings Change

Nothing stays the same. Some of you will remember and even miss the days of what was. Remember screen test patterns *  the fall of the innovative company, General Magic * the magic of hit toy, Teddy Ruxpin * no more Friday night rush to Blockbuster Video *  the love of the video game arcade * the hilarity of Celebrity Death Match * the intrigue of the cartoon, Jonny Quest * the wonder and excitement of going into a magic store * or having ice cream in NYC at the long gone ritzy and elegant NYC ice cream parlor, Rumplemayer’s, *  the lessons of Fractured Fairy Tales, and the teachings of School House Rock * the breakthrough of cassette tapes and the frustration of finding your song on an 8 track * the challenge of finding stored computer files on cassettes and floppy discs * the disappointment of Al Capone’s vault and new Coke * the loss of childhood candy with real sugar and real ingredients without fillers and fake stuff, corn sweetener or xylitol, sorbitol, or dyes * when there was no Web access and you actually talked to librarians and experts on the phone or by mail * when you typed code of computer language out of a book to develop a game with very limited features for hours only to have to retype it again, because you missed a comma or a character—making for retyping of hours of editing * only having access to music and pictures to what you bought in the Record Bar or Tower Records and pictures that you took on your disc camera or instant Polaroid * when disco died and country was cool and real * remembering television stations signing off at night to end their day of broadcasting and there were only 3 stations to choose from because cable wasn’t created * books were treasured, revered, and read as a choice of education and entertainment but they didn’t rival television because many of the books were better than lots of the programming * when radio preceded television (I was too young) but I do remember listening to years of American Top 40 with Casey Kasem and hours of radio, both day and late into the night * a small handheld Sony portable television made television viewing mobile * when people met in the classified ads * when infomercials were new and Mr. Microphone and the Pocket Fisherman reeled you in.

Like flowers!

Change is inevitable. From my experience, people with Parkinson’s disease are not wild about change. I am not big on change, but I try to embrace innovations and new technology, as best as I can. Some changes are easier than others. Flexibility and resilience can go a long way with Parkinson’s. Life has changed in a rapid and dramatic manner. Our lives will change as will the rules of how we interact with the world and those close to us. For the foreseeable future, we must envision the welfare of others and see that we mask ourselves to prevent the spread of the contagion and minimize danger to those at risk.

A Parkinson’s Wellness Checklist

Photo of a tasty tart by Karl Robb
Good diet!

Self-care is a topic that I talk about quite a bit, on this blog. During these changing times, it can be easy to forget wellness tools that we have in our toolbox.

In helping myself to remember to do my own self-care, I developed the checklist below and thought it might be a helpful resource and tool! You might consider using the list as a daily checklist to discover some helpful sites and be inspired to start or finish a project.

Wellness is an important part of our journey with Parkinson’s disease. I believe keeping the mind, body, and spirit in balance is a holistic approach to living well with Parkinson’s. This list covers these these 3 areas of wellness and allows to you to be creative with the items you feel drawn to add.

If you know your Parkinson’s disease resources well, you might share the list with those who are less familiar with available information. I hope that this is a tool that you can use to help yourself.

PD Checklist by Karl Robb author ASoftVoice.com

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!

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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