Interview with Kathy

On the Diagnosis:

When were you were diagnosed with MacTel?   

I was diagnosed in January of 2013.

What are some of the first changes you noticed in your vision?

I first noticed how hard it was to read closed captions on TV.  This was about 2-3 years before my diagnosis.  At first I just thought I was getting older and could not read as fast.  However, I read 2-3 books a week.  I did not realize that there was a problem with my vision.

In 2000, I had laser surgery on my eyes (before the diagnosis).  My eyes were overcorrected, so my vision was not 20/20 and could not be corrected.  I was lucky to go to a new optometrist who was concerned that he could not correct my distance vision.  After an extensive examination, he said there was something wrong with my retina and he told me to see a retina specialist.

What was your experience in getting a diagnosis? Were you correctly diagnosed on your first visit? 

The retina specialist diagnosed me with MacTel on my first visit.  I had a follow-up appointment a few weeks later for the OCT exam.  He told me that there was no known cause for MacTel, and no treatment.  He said I should have an eye exam every six months to track changes in my vision.  He did not paint a picture of gloom and doom, but also did not offer much information.  He told me that he had only seen about 10 patients with MacTel during his career.

When you were diagnosed, what information did you receive about MacTel?  Where did you go to learn about MacTel?  How well do you feel you understand the disease?

When I received the diagnosis, I was told a little bit about the disease and was able to see the OCT scans.  I had never seen an OCT scan before, so I didn’t know what I was looking at.  I learned most of my information about MacTel from the internet.  However, the Wikipedia article scared me quite a bit; I was convinced I would be blind in a few years.

I seemed to go through several stages of grief after the diagnosis, cried a lot, felt helpless and defeated.  However, as time passed I learned more about the disease.  I also found out about the MacTel Project.  I was able to get evaluated through the MacTel Project and have the diagnosis confirmed.  I no longer feel hopeless.  I am learning to adapt and have hope that the research done by the MacTel Project will stabilize my declining vision.

On Living with MacTel:

What are your biggest challenges in daily life? 

Reading, using the computer, driving, reading menus at take out places, and watching TV are all challenges but we are lucky to live in a world with so many things available to make life easier for those with low vision.

While there are many accommodations for people with low vision, I still experience challenges.  I recently wrote to Starbucks to complain that they do not have a written menu available for people who cannot see the menu on their wall.  I never know what to order when I go to a drive thru because I usually cannot see the menu.  I can no longer read the newspaper, magazines or the text on TV.  In fact, I have real problem with the current trend to have characters on television shows texting each other; I have no clue what is going on because I cannot read the texts.   I cannot read street signs and don’t usually drive unless I am sure about where I am going.  I try not to drive at night or in heavy rain.  At work, I’m kind of the computer expert.  Whenever someone needs help I have to sit in their chair so I can be close to the monitor because I cannot read over their shoulders.

How have you adapted your lifestyle to overcome these challenges?

I have made many adaptations both consciously and unconsciously.

Newspapers:   I get the Washington Post on my Kindle every morning.  That, along with the news reports I read on the computer, have replaced the newspaper for me.  I do miss the Sunday paper.  Magazines are a problem, most of the versions available to read on my tablet are not done very well and are not easy to read. Hopefully as we all change over to a digital world that will get better.

Books:  I still read several books a week but now they are all on my Kindle. It’s easy to get just about anything you want from the library to read on your tablet.  I can read traditional books but it is a strain. I just don’t want to deal with it when it is so much easier to read on my device.

Computer:  My work has been very supportive.  As soon as I was diagnosed my boss got me a 27” monitor, and it makes a huge difference.  I just zoom in on things and I am able to function pretty well.  I do a lot of graphic art, web design and a quarterly magazine layout without any problems.

TV:  I love my 60” TV, I can watch most things fine unless there are words on the screen.  If I’m streaming a show and want to read something on the screen, I will just pause it and get up close to the TV to see what it says.  I also set my TV to have a vivid color profile; that makes it easier to see.

Instructions:  This is a big problem.  Most instructions are written in a size 6 font.  If they are short instructions, I will scan them in on my printer and view them on the computer screen.  Larger appliances or more expensive devices usually have an owner’s manual available online, which is easier to read because I can zoom in on my computer screen.

Driving:  I’ve never been someone who loves driving but it is definitely a greater challenge now.  I have no hope of reading street signs so I need to plan in advance if I am going someplace new.  Before driving somewhere new, I usually use the “street view” in Google maps to see what the route looks like.  It is especially helpful to find landmarks on corners where I need to turn.  Hopefully my next car will have a GPS and that will make things easier.

Has having MacTel impacted your work? Your family life?

I work in an office with only five people and they have been very understanding.  If we have any events that require driving someone else always takes me.  My daughters are doing better now about accepting my diagnosis.  At first they didn’t understand why I was so upset.  They have a better understanding now, but I don’t think they have looked too deeply into the disease as I have adapted pretty well and my lifestyle changes have not affected them too much.

Are there specific environmental conditions that are visually challenging?  

I have to be careful about looking at bright light, it seems to take quite a bit to time to recover if I look at something bright.  There are certain times of the day when it is harder to drive because of the light.  There is a stretch of freeway near me that is very light in color and the lines become almost invisible in the late afternoon.  Menus are often hard to read but if I know I am going to a specific restaurant I will look up their menu online so I can make my choice beforehand.

Do you have any advice for someone newly diagnosed with MacTel?

Read as much as you can on the internet, but be careful to take what you find with a grain of salt.  When reading message boards remember the people commenting are not medical professionals.  I have faith that the research being done will lead to some answers about MacTel.

That being said, it good to see how others deal with MacTel, and to read about their experiences and coping mechanisms.   When reading information online, it is important to recognize that Macular Telangiectasia type 1 and MacTel type 2 are different conditions.

I would tell people to have hope for the future, accept your limitations and make adaptions to your life as needed.  The good news is that this condition progresses slowly.  It has been three years since I received my diagnosis, and I have had only a slight decline in my vision since that time.