Hosts Dawn Prall and Shawn Doyle begin the episode with a conversation about energy. They discuss how much energy people end up having to expend after being diagnosed with macular degeneration—from determining next steps; to discovering available resources; to asking the doctor follow-up questions; or even simply to sort it all out. Dawn also talks about the added challenges when having to access the computer, internet or written materials they need and why—for these reasons among others—experts say that macular degeneration affects not just the individual, but the entire family.
Likewise, Dawn mentions that in addition to energy used in educating oneself about the disease, there is also a lot spent in navigating ordinary life tasks with MacD, such as researching insurance or buying a household item online. Shawn shares two strategies for tackling difficult tasks while living with MacD, as author of a book on productivity. He offers tips on identifying one’s maximum productivity zone, or MPZ. He refers to it as the time of the day when you have the most energy. The second strategy he conveys is about finding an advocate to assist in the tasks rather than going it alone.
In the next segment, Dawn interviews special guest Richard Tapping, Vice President of Vispero, about assistive technology; Vispero’s history, philosophy and its three brands: Freedom Scientific, Optelec and Enhanced Vision; and the benefits of using magnification devices. Richard talks in detail about how these tools enhance quality of life for people living with MacD and low vision, as well as Vispero’s two-step approach to addressing individual needs. He shares a personal story about his grandfather with MacD and how taking small steps with easing him into magnification technology positively impacted his life by allowing his grandfather to participation in a regular hobby he had given up on. They cover how and where to find ease-of-use devices to assist people with MacD or low vision, concluding with a discussion on their affordability.
Actress, singer, voiceover artist and SiriusXM radio show host Christine Pedi stops by to offer her thoughts in the following regular segment, where she navigates life through diminished vision and transitions into the world of visual challenges. In this episode, Christine shares her inspiration from reading Norman Lear’s memoirs, Even I Get to Experience This. She offers her positive takeaways from the legendary television writer-producer’s experiences in the book. She relates how his words remind her to see what she is going through, such as a new downturn in her vision, in a slightly different and positive way—that even with the highs-and-lows and ups-and-downs in life, there is room for gratitude and wonder. She also relates how his story conveys that one single moment in life does not have to define anyone’s entire life, as with vision loss for her.
Shawn then takes a moment to talk about how to maintain hope when living with macular degeneration. He offers insight into using technology, orientation, practice, plans, engagement and education as key strategies to preserve hope for a brighter, productive future even when struggling with MacD and vision loss.
Dawn and Shawn introduce the closing regular segment on new assistive technology, featuring Vispero’s Bill Kilroy, Senior Sales Director for the Northeast, and Mike Woods, Strategic Accounts Manager for Education. In this episode, Bill and Mike provide details and highlights about the ClearReader, a portable scanning and reading unit and Optelec product. They describe how this versatile all-in-one unit is popular with customers, offering 59 high-quality reading voices that can read in 31 different languages, which are easy to change. Mike outlines top ClearReader features, which include its built-in stereo speakers, headphone connector, HDMI port to output, USB port and SD memory card slot, with a rechargeable lithium ion battery.
Mike adds that is it foldable, lightweight and has adjustable volume and the speed of the text being read back. Bill and Mike conclude with information on how to learn more about the ClearReader unit and how it has helped people they know remain independent. Co-hosts Dawn and Shawn close out the podcast episode with additional links and resources for those living with macular degeneration.
What We Discuss in this Episode
This fourth episode covers the following featured topics:
“We're happy you've joined us, we're excited to bring you some great information, education and inspiration. We really want to make a difference in the life of people who are suffering with MacD, and we call it MyMacDLife.” (00:53)“Our expert today is president of Vispero, who by the way is the leading manufacturer of all the assistive technology devices out there to help people with everyday tasks.” (1:32)“[Richard Tapping] is really an expert on the whole spectrum of what's out there for people to use and help them read, watch TV, see pictures of the grandkids—all the things that are important to people that are really challenging when you have MacD.” (1:50)“That's what we call our maximum productivity zone, MPZ—so what's your maximum productivity zone?” (5:52)"Some of those brands include Freedom Scientific, Optelec, and Enhanced Vision.... These companies have products and tools that can help provide access for folks that still want to read their mail or read a book, read the newspaper, do their own banking, use a computer have access to email, things of that nature.” (9:49)“These tools are incredibly important to daily functioning, as people get diagnosed and start to experience some vision loss.” (10:54)“The RUBY handheld magnifier is one of the simplest video magnifiers. The contrast, the design, the buttons, and the controls are designed really effectively. They're very simple to use, they're very intuitive.” (22:07)“Freedom Scientific, for example, is very much focused as a priority on kind of total blindness and tools for total blindness, so they have screen readers for a computer.” (26:04)“It reminded me that whenever I get a new downturn in my vision, a new little portion of my field of vision that doesn't look right…. to allow me to think about what I'm going through in a slightly different way.” (39:53)“I'd like to talk about some ways of maintaining hope and it actually spells out the letters hope, H-O-P-E.” (45:57)“Today we're going to be talking about the ClearReader, which is an Optelec product, and this product is a portable scanning and reading unit.” (51:32)“I've got a lot of friends of mine that are totally blind that actually use this because it's very simple and easy to use, just has a few buttons so it's not very complex to learn.” (53:19)“I think I would just tie it up in a nice tidy bow and say this: Don't be afraid to ask for help.” – Dawn Prall
“The technology has really come a long way, and people should really perhaps think about these tools as a way to accommodate or provide the visual enhancements that they may have lost through their vision loss.” – Richard Tapping
“People have no idea that there are tools that absolutely do help and reinstate, reinstall the independence that someone may have lost over the vision loss.” – Richard Tapping
“The message people I hope get from a lot of this conversation is that when you can't see, investing in a tool, investing in the technology that's out there and accessible for you to improve your life, help yourself, be able to read, be able to do crafts, be able to do the things you enjoy, look at the pictures of your grandkids.” – Dawn Prall
“I should make the point that this is all Vispero does, and all we've ever done. We don't have other interests and different business segments or anything of that nature; we are entirely dedicated to providing greater access for those with vision loss. – Richard Tapping
“We get the highs, we get the lows. These are the things that give us texture, that give our life and the tapestry of our life, the depth and give it fiber. And I just think that it might be helpful to look at it that way. Because life is full of wonderful highs, but boy, is it full of difficult lows. And yes, it's also full of boring stuff—we get to experience it all.” – Christine Pedi
“And if you're going through a negative circumstance with your eyes, see if there isn't a moment, a part of it, a portion of it, an instant of it that you can't say, ‘Even this I get to experience.’” – Christine Pedi
“Why am I living in a moment and saying this moment is informing the rest of my life, period? Yes, all our previous moments do inform the rest of our life, but they are not each of them solely responsible for the rest of our life. They work together. And I found it very helpful.” – Christine Pedi
“Even though this is a devastating diagnosis with macular degeneration—and losing your vision can be devastating—it doesn't mean you can't lead a great life. It doesn't mean you can't find joy. It doesn't mean that you can't live with the disability. It may be your new normal, but you can live an amazing, beautiful life just by addressing hope.” – Shawn Doyle
- https://www.healthyvisionassociation.com/
- https://www.novartis.com/
- https://www.centricbank.com/
- https://hinklestein.com/
- https://www.freedomscientific.com/
- https://us.optelec.com/
- https://www.enhancedvision.com/
- https://www.freedomscientific.com/products/lowvision/rubyproductfamily/
- https://www.christinepedi.com/
- https://us.optelec.com/products/cr-ba-g2-us-13m-optelec-clearreader.html
- http://www.supportsight.org/
- http://www.mymacdlife.org/
Support this podcast at — https://redcircle.com/mymacdlife-macular-degeneration-podcast/donations