SupportSight Cleveland

Articles about the Cleveland chapter of SupportSight:

Patience

The phrase, Patience is a Virtue, was written for macular degeneration patients and their loved ones. Other virtues, if that's what they are, that come in handy are understanding, flexibility, honesty, acceptance, not being too resistant (stubborn) to ask for help, the ability to pick yourself up by the boot straps and above all, a sense of humor. The willingness to have a high ball doesn't hurt either.

My mother developed the wet form of macular degeneration in one eye virtually overnight. Despite quick treatment she continued to bleed and today has minimal vision in her right eye. At that time it was also discovered that she had the dry form in her other eye, which unfortunately in just a few months progressed to wet.

We're grateful to Retina Associates and specifically Dr. Pendergast for their cutting edge research programs that enabled him to perform a surgery to save some vision in what was the "good" eye.

Our journey over this past year and a half has been a roller coaster ride of emotional ups and downs. If you were like us, you first have to deal with getting a diagnosis you know nothing about — yet you find out it's the leading cause of blindness in people over 60.

Quickly you learn about it and you live with the fear that it's going to get worse. In my mother's case it did. I think one of our most difficult times is going to frequent appts and not knowing what you'll hear — getting good news on one visit and bad news the next.

You have a million questions but there's never enough time to get all the answers. You go home and you struggle to improvise ways to cope with the effects —

You quickly realize too that there are not a lot of accommodations for people with low vision — dark restaurants, menus you can't read, etc.

Losing some degree of independence is probably the worst thing. Depression is common and made worse by the fact that many older folks suffer from depression normally. Now MD adds another layer of complexity.

While my mom and I thought it would be nice to sort of wallow in despair, there's really not time to do that. You need to identify the resources that can help — first to ensure safety, but more importantly to be able to do those activities you do every day.

What often happens is that the resources are available sooner than the person with MD is ready to accept them. It is all very overwhelming at first — learning how to use the different magnification devices — or even more simply having to use them. The first time we left the Cleveland Sight Center, having been there three hours, we both wept. It was very overwhelming. Then the patients seeming resistance to even trying aids often leads to frustration on the part of the family or caregiver.

Each family has different coping strategies but it's important to know when you need some outside help. Many times people resist going to support groups or even just talking one on one with someone else who is experiencing the same thing.

We've learned that talking with others is of great benefit. The first time we attended a support group with just two other mother/daughter teams, neither of us wanted to go. The others in the group said the same thing — but I know that my mother and I left feeling like our spirits were lifted. I urge you to get involved with others who have this disease — it's amazing how many people there are. Talking does help.

Don't get me wrong — there have been a lot of tears in our family over this, but we also laugh a lot — but then we see the humor in things others may not. While I have lots of stories I could tell, one such instance comes to mind — While my mother has told me to never hesitate to tell her if her hair is standing on end or her clothes don't match, I always worry about hurting her feelings. One day though, I had to speak right up. She had come over for a cookout with some friends and as she walked into my kitchen — I did a double take — she had used a tube of concealer as lipstick and she looked like Al Jolson. I still marvel that her friends didn't say anything!

In conclusion, I can't stress enough to those of you with the disease and to those of you who are family and friends — you don't have to deal with this disease and the effects it has on your life — in isolation. As you hear more about a support network being developed here in Cleveland, please take part. You may not think you'll learn anything yourself, or that you could possibly have anything to say that others want to hear, but you will be surprised. Speaking from experience — it makes a difference.

—Bonnie