Blog Archives

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.

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.

Hear It, Share It – Positive Daily Living (Part 4 of 4)

I hope that you enjoy this last installment (4 of 4) in the Hear It, Share It series where you can listen to chapters of my audiobook (for free/no download).

Chapter 29 of my book,
A Soft Voice in a Noisy World, is Positive Daily Living. The chapter offers some fresh perspectives and numerous suggestions on how we might make some changes in our daily lives. Voice actor, Doug Gochman does a wonderful job in expressing my words on the audio book.

Chapter 29 – Positive Daily Living – A Soft Voice in a Noisy World by Karl Robb

Listen to the Series

If you missed the first three parts of the series, you can use these links to go back and listen:
Part 1: Timing in Parkinson’s Disease May be Everything
Part 2: This Disease Isn’t Fair
Part 3: How to Talk to Doctors

Please feel free to comment about this chapter by clicking the Leave a Comment button below. Share this post with others by clicking the share buttons on the right.

If you want to hear more of the book, the audio book is available where most audio books are sold. Here’s a link to the Audible/Amazon version. If you still use CDs, you can either order online via our Square store or email us to order the 4 CD collection!

Getting What You Need-Support

 

For the first 7 years of being diagnosed with Parkinson’s disease, I didn’t see a need, nor did I have a strong desire to join a Parkinson’s disease support group. When I moved to the suburbs, my neurologist, at the time, encouraged me to see what support groups could offer. After attending meetings of a few support groups, my wife, Angela, and I envisioned what we wanted in a group. In a very short period, I went from avoiding Parkinson’s support groups to speaking at them and even starting one of my own. My wife and I ran our support group for a dozen years. I learned so much from so many amazing people. As much as I thought that I didn’t need a support group, it turned out, that I really did.

The reality is that a well-run support group offers camaraderie, information, and a wisdom that comes from so many, all in one place. A support group can show you what is working and what to avoid, doctor information and feedback, available classes that pertain to Parkinson’s, local therapists, caregiver support, Parkinson’s news, and speakers in your area. When you find a good group, it feels like another family and a place that you belong. A strong network of family and friends is crucial to your health and wellness, no matter what the illness.

Some support groups may not match your personality or may not be the kind of group that you feel comfortable with, right now. I wanted a group that focused on the sharing of information and left me more empowered than when I came in. We made a lot of friends, shared both the good times and the rocky times, and provided one-another moral support. Despite our age differences and unique situations, we all learned together and bonded together into a cohesive unit for most of the group’s longevity.

We Are All In This Together

Knowing that you aren’t alone, is so important. Something as small as telling someone that you are thinking of them or that they matter to you can save another’s life. Knowing that people are thinking about you and caring about you is so empowering. Just a simple quick text, an email, a phone call, or a good old-fashioned greeting card can make a huge impact.

Care-giving has its stressful moments. We all need a break. Taking time for ourselves is not selfish-it’s a precious necessity. Your self-care makes you a healthier more helpful contributor.

Helping Ourselves Helps Those Close To Us

Patient or caregiver, there is no shame in admitting that you need help. It takes a strong person to go outside his or her comfort zone. Tell someone close to you what you are feeling and to let them find assistance for you.

I am not an expert on mental health nor am I a doctor. This is not medical advice; it is only what I have seen for over the 30 plus years of having Parkinson’s disease. I have observed friends struggle, who may have benefited from this kind of help. If you see a friend in need, reach out and offer that help. You may be saving a life.

National Suicide Prevention Lifeline is 800-273-8255 or 988 in the USA. Go to https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines for an international list of hotlines.

 

Ideas For The New Year

 

Fresh Starts Aren’t Always Necessary

It’s a new year and the thought of those resolutions on the club napkin are but distant memories. Seriously, resolutions can be wonderful intentions yet only to create a burden that wasn’t the intention in the first place. If you are truly goal-oriented, resolutions are simply extensions of those goals that are nagging you the most.

Making Priorities

My biggest battle with my body and mind as I age with Parkinson’s disease is prioritizing:

  • Contending with what I should do and what I don’t want to do.
  • Weeding out projects that I really want to do but know I shouldn’t do.
  • Identifying what I can let go of.
  • There are things I must let go of just to get better.

 There are sacrifices for one reason or another that we all must make. Illness doesn’t always influence our important decisions, but it can most assuredly be a contributor to the making of those decisions.

Drive

Illness provides a perspective for many of us, due to a pushing drive and a boosted sense of urgency. The only solution to quelling the nagging feeling, is fulfilling that drive to produce.

Trimming and Expanding

Most resolutions includes weight loss, health, reading more, less television, or a making more of or a reducing of something. Wanting to improve ourselves is the right direction to go, but if we go overboard, it may have a reverse effect and cause us stress, anxiety, and or tension. We must be careful to ensure that we aren’t doing ourselves a disservice by taking on too much. Knowing our stress level and not exceeding it is crucial to our well-being. Keep your stress level in mind as you monitor your health regimen and overall wellness. Be kind and forgiving to yourself whether you fall off the diet, or not. Stay committed to your projects of 2020! Best of luck!

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