S2E5: Cassidy Collins - My Dad has MacD

In this episode, Marcela Salmon speaks with Cassidy about growing up with a father, uncle and aunt with macular degeneration. Cassidy has lived around MacD for her entire life. She became aware of her father’s condition during a trip to Colorado when she realized her father couldn’t read things easily and she would help.

Her father first worked for Vispero, then for LVI, a company based in Sweden that sells products to help legally blind people. When LVI expanded to the United States, her father became the chief marketing sales director for the United States division. Her father never viewed himself as having a handicap. In fact, his disability made him even more successful in life and opened the door to helping others find success as well.

One of the inspiring things Cassidy’s father did was write a book called Tripping Into The Light about his journey growing up with Stargardt's juvenile macular degeneration and how he has been successful in life.

As the story goes, Cassidy’s grandmother took her father and his three siblings to a hospital in Massachusetts to get tested for their eyesight. The doctor proclaimed their eyesight would get progressively worse and proceeded to write a list of all the things they could and could not do in life, including skiing and snowboarding. Leaving the office, his grandmother threw the notes in the trash and the rest is history - Cassidy’s uncle became a ski instructor in Colorado and her father became an entrepreneurial success. Her grandmother made sure the disease would not hold her children back from pursuing whatever they wanted in life.

Cassidy explains that her father uses a CCTV that reads to him or magnifies things for him as he only has peripheral vision. Cassidy tells Marcela that her father has learned how to train his eyes to look straight at you when he’s talking rather than peering from the side of his eye.

Cassidy explains that this adaptability and entrepreneurial spirit is one of the driving factors to his father’s success, and an inspiration to her. Marcela

As a caregiver Cassidy says learned when to step in and help and when to back off, and that she thinks patience is the key to aiding people with MacD. She stresses how important this is for independent people like her father, who get easily frustrated when they want to do things on their own, but can’t. They also don’t like to be approached by strangers and assisted without first knowing what is going on. Cassidy references an example of the time two people lifted up Cassidy’s father to help him cross a street.

This episode focuses on what it’s like to be a caregiver and how you tend to notice everyday things differently, like restaurant lighting, going to the movies; even the monotone colors of carpeted stairs, which can be tricky to navigate for a person with macular degeneration.

Luckily Cassidy’s father is very open and even lighthearted about having MacD. He has accepted his eye disease and often speaks out, making suggestions that would improve his surroundings. He can laugh about his shortcomings and puts his energy into reading “how to” informational and nutritional books for self-actualization. Cassidy’s father now runs a nonprofit called “The Thriving Blind Academy,” where he teaches the principles of success.

Bill Kilroy of Vispero shares information on the Freedom Scientific Topaz line of desktop video magnifiers. These devices sit on a desk with a video magnification system that includes a camera monitor and an X Y table. The monitor sizes range from 20, 22 or 24 inches. It’s versatile, with the ability to swing left or right, raise or lower depending on your height. It allows for someone with notes to be able to move those notes around and be able to magnify what they need. Because these devices have a bigger monitor, they can magnify more information on a page at a time. There's less mental processing to put the characters into words, the words into sentences, the sentences into paragraphs, and you can use these devices for longer periods of time than a handheld magnifier.

It also allows the user who might want to pause on reading a chapter to start scanning pages so that they can sit back and listen to what's being read. The Topaz OCR is a great choice to have and goes above and beyond the OCR capability.

To learn more about The Topaz or The Merlin or The Optelec, there are two ways to get in touch. Go online and type in www.vispero.com or call our toll free number at 1-800-444-4443 and speak to one of our customer service representatives. You can tell them what you're interested in, they can guide you through some of the products and can connect you with a local resource that can help you in your home or schedule an appointment to potentially come to their showroom and learn more about these products and test drive one for yourself.

Full Disclosure: Cassidy Collins is the eldest daughter and a caregiver to her father Charlie Collins. Charlie Collins is a member of The SupportSight Foundation board of directors. In compliance with TSSF governance policies, members of his immediate family (daughter) did not receive any direct financial benefit for her guest appearance on this podcast.

Recommended Resources

• https://amdcentral.org
• https://www.evokekyne.com
• https://www.brightfocus.org
• http://www.mdsupport.org
• https://preventblindness.org
• https://www.macular.org/
• http://www.supportsight.org
• http://www.mymacdlife.org
• https://vispero.com/mds
• https://www.thrivingblindacademy.org
• https://lviamerica.com
• https://charliecollinsonline.com/product/tripping-into-the-light