|Pepi Noble shares with us her journey of being diagnosed with macular degeneration along with her tips on living with AMD.|
I’m a healthy, happy almost 70 year old woman with low vision. I was diagnosed with the dry type of macular degeneration when I was 50. Little was known about this condition 20 years ago and I had relatively little difficulty with my vision until 2008.
In January 2008 during my semi-annual eye exam which included a ocular scan, my then ophthalmologist reported that the dry macular degeneration in my left eye had turned to the ‘wet’ type and could be treated by an injection directly into the eye using a drug called Lucentis.
Without treatment I might lose the sight in that eye due to leaking blood vessels. Rather reluctantly I finally agreed to this course of treatment and for almost 18 months had almost monthly injections, none of which held for more than a few days.
It was during this time that I started losing contrast and depth perception, as well as suffering from glare issues. I stopped driving at night and soon, thereafter, during inclement weather.
At an appointment in March of 2010, it became very apparent that I was just one of a long line of patients being prepped for Lucentis injections and decided it was time to change specialists and look for another opinion.
In July of 2010 I had my first visit with my new ophthalmologist who, after a thorough examination, ocular scan and using computerized viewing images, promptly threw out the diagnosis of ‘wet’ macular degeneration and told me I had a macular pucker in the left eye. This pucker is like a wrinkle of tissue on the macula and was causing the central vision loss.
An operation to ‘peel’ or remove this tissue was available but with various allergies to medication and ongoing family health care issues, I decided not to have the procedure.
Over the next few months I realized I was having more and more difficulty reading, seeing fine details and couldn’t discern the colors of my birds anymore. The lovely gift of a Kindle from my sister helped with the reading but I still couldn’t read newspapers or magazines easily. This saddened me but also made me more determined to find a way to enjoy these things again.
I heard that the Northeast Association for the Blind at Albany (NABA) was holding a Low Vision Fair and that’s where I found my lighted magnifying glass and learned a little more about lighting in general. I also found out about a low vision examination available to me through the Low Vision Rehabilitation Clinic at the NABA offices. Although usually covered by insurance I received a free exam through a grant to the clinic.
This opened up a new world to me and my husband. After a comprehensive low vision exam and a new prescription for glasses, I also learned a great deal about proper lighting for various situations and it was then that the Clinic Director, Dr. Monica Casey-Gee told me about eccentric viewing.
Since I wasn’t familiar with the term, Dr. Casey-Gee explained that most people use their central vision to see but that there are other ways to use the eyes to see, including peripheral vision. It was also exciting to learn a course in Eccentric Viewing Technique was available at our very well-known Sunnyview Rehabilitation Hospital in Schenectady, NY.
I asked my ophthalmologist for a referral to the program and that’s where I met Leslie Bennett, an occupational therapist with a low vision specialty. My life was about to change again.
So what is Eccentric (pronounced E-Centric) Viewing? It’s a way to efficiently use available vision to compensate for a blind spot or central vision loss. This program helps you use an area of your peripheral vision to read.
The program starts with a very thorough intake and question session and it dawned on me through that experience that my vision loss was more extensive than I realized. That worried me but it also better prepared me for the therapy.
I participated in the structured 5 week therapy which included exercises to help me detect the best position to direct my eyes. Although it feels a little unfamiliar at first, within a day or two I was able to use the lower portion of my eyes to read newspapers and magazine without additional light or magnification.
And as the weeks went by even driving became easier as did computer usage. I also learned more about safety in and out of the home, tips and ideas that make daily tasks much easier, more about protection from glare, better lighting and so much more. The therapy was covered by my insurance plan with a co-pay as the only out-of-pocket.
Participating in this therapy was one of the most productive things I’ve done. It brought me comfort and confidence and reduced stress. It was during this time I decided to begin a new blog about my journey through life with macular degeneration and low vision. You can read it here:
Addendum: on November 14th I had the vitrectomy and the surgeon removed three layers of tissue from the macular. Surgery went very well leaving me with the expected blurred vision in the left eye which will hopefully improve over the next few months. Since my vision has changed I think I’ll go back for some updating on Eccentric Viewing