“How would you know?”
A question that has crossed all of our minds at some time or another. When someone gives you advice without ever having been in your shoes, it’s not always helpful. Often it’s more comforting to turn to someone in the same position as you, someone who can give guidance and understanding from personal experience. For those struggling with vision loss, support groups provide a place to share personal fears, coping mechanisms and resources as their vision changes over time.
MABVI Marlborough support group member Robert Marcotte explains: “The goal of the meetings is to give support and information to our members and also to give them a place to come and interact with other people who have the same issues. Many do not know where to turn or what is available to them, and just need to interact with other low vision people and discuss/share their problems.” (See Marcotte Helps Sight-Impaired)
Support groups meet monthly to discuss a range of topics, depending on the interests of the individuals in each group. Guest speakers such as medical experts and town representatives visit to speak on pertinent issues. Members share tips for daily problem solving, such as handling finances or grocery shopping, and confide in each other how they cope when they’re feeling blue.
“Support groups provide a safe place for those struggling with vision loss. Individuals can be completely honest of how they’re feeling and just be themselves,” says Fran Weisse, former MABVI Greater Boston Regional Director.
This year’s annual Senior Connection, a day-long conference that joins MABVI support group members from across the state, featured the discussion, “Our Favorite Things,” where members had the opportunity to share the products and technology that have been most valuable to them for daily living. Here are some of their tips:
Some Favorite Things
Mary shared her favorite item, a telephone with a talking caller ID. She asked, “How many people here can see the numbers on your caller ID?”, inviting a few chuckles through the crowd. By purchasing her caller ID for the small price of twenty dollars, she saved much energy once spent on picking up the phone for pestering callers!
If you’re struggling with macular degeneration, Ellie may know a thing or two about what you’re going through. Her advice: a pair of thick glasses called “bubble glass” of which the left eye is blacked out. With these, she can bring items with small writing right up to her eye and read with great magnification. Ellie speaks in detail about bubble glass in the video below.
Joanne from the Newburyport group admitted, “I probably needed a white cane twenty years before I got it.” She spoke of the stubbornness by some of those who really need a mobility tool. She shared her story: she loved to walk, but unfortunately a few too many of those walks ended in harsh falls leading her straight to the ER. One day a particularly bad fall gave her a concussion. From then on she has used her white cane, no questions asked!
Other popular recommendations included the nubby dots to paste on different items, audio books, and high powered magnifiers. Among more high-tech products named, were the The PenFriend Voice Labeling System, CC Television Reader, iPhone, and Kindle Fire. More general favorite things were shared, such as having lunch with friends, dancing, exercise and a sense of humor.
Ellie said, “This is one of my favorite days. I feel like I’m with all my brothers and sisters on this day and we all have the same problem. And it’s a wonderful feeling.”
MABVI support groups meet monthly at various community locations. Transportation is provided when possible, and we help make arrangements. View a listing of our current support groups by clicking here. For more information, contact us at (617) 926-4232 or (800) 852-3029.