Category Archives: support groups

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.

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.

Hear It, Share It (Part 1 of 4): Timing in Parkinson’s Disease May be Everything

During these uncertain times, now seemed the right time to share with you some words that might be of help. As we all are at home during this outbreak, I know I’m thinking about and discovering how to get back to a routine that I can keep. It isn’t easy with constant distractions. The refrigerator constantly trying to lure me, the phone ringing with robocalls, trying to work, and timing my medications – all at once – they all pull at me!

Listen to the Audio Series

So, for the next four weeks, I will be sharing a chapter from my audio book, A Soft Voice in a Noisy World – A Guide to Dealing and Healing with Parkinson’s Disease that I think might be helpful. This week’s chapter is about dealing with timing in Parkinson’s.

Timing is Important

Timing your medicine, your diet, your exercise, your sleep, and your work are a challenge that takes some self-discovery. Click the play button below to hear voice actor/narrator, Doug Gochman read Chapter 15 of my book, to get some ideas on timing:

Chapter 15: Timing in Parkinson’s Disease May be Everything

Keeping up on a simple daily regimen can feel like a full-time job in itself, and the longer you have this illness the more you’ll recognize the importance of being diligent in monitoring how you’re body is reacting to your medicines.

Karl Robb, A Soft Voice in a Noisy World

Please feel free to comment about this chapter and share your own tips on how you manage your daily timing by clicking the Leave a Comment button below. Share this post with others by clicking the share buttons on the right.

Next Week’s Chapter Hint…

The next chapter in this series deals with the dilemma of weighing the fairness of living with a chronic condition. Come back next Thursday to hear the next installment!

If you subscribe to the blog today, you will receive automatic notification when the next post is released.

Tools and Resources

This pandemic has changed the world as we know it. There is no telling when quarantining will end and what will be the new normal. I have seen a few shining positives that have brought on what I hope will outlast the coronavirus outbreak.

After over a quarter of a century of advocating to Congress about the benefits of telehealth, your doctor visit by video has become a reality out of sheer necessity. Telehealth or telemedicine can reduce stress, anxiety, rush, travel time, germ exposure, and makes it easier for the carepartner. In trying times like these, heroes arise from selfless contributors, like the dedicated men and women facing the front-line of this virus, day after day.

As distance learning and remote access to information has quickly surged, I offer you a helpful list of ongoing classes, speech therapy, singing, relaxation, exercise, and socialization. This list of resources will hopefully help you to stay active, connected, and supported. Our list is a useful array of local, national, and regional online resources that may make your day, just a little better!

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.

 

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