Interview with June Blades
On the Diagnosis:
How long has it been since you were diagnosed with MacTel?
I was diagnosed with macular telangiectasia type 2 in April 2014, close to age 60. The diagnosis was confirmed about two months later.
What are some of the first MacTel-related changes that you noticed in your vision?
I have had difficulties with my vision from a young age, but I began to experience additional problems related to my vision in my late 40s. It was around this time when night driving became very difficult. I was unable to navigate dark country roads and would often miss turns. One particularly long night drive prompted me to stop driving in the dark. With the passage of time, driving during the day also became difficult. When I was 55 years of age, a car was turning in front of me as I was turning left at an intersection. I did not see the car at all. That car followed me for a distance. When I stopped for petrol, the driver had an animated discussion with me regarding the incident. I assumed that I must have been distracted; it did not occur to me that I did not see the car because it was in the center of my vision.
Things continued to drop out of my vision. Letters would “disappear,” and words were contracted or shortened with no hint of a gap, or any indication that there was something missing. For example “Northway” became “Norway.” Without context, reading single words became problematic. Also, shopping became an economic hazard. Many items were mistaken as relatively cheap: I would read that an item cost $495 or $195, rather than the actual $1495. However, I noticed that if I shut my left eye, I could see all the letters. The faces of newsreaders on television have entered what I call my Picasso stage with each face having a single eyebrow, eyes close together that they appear to touch and noses distorted.
What was your experience in getting a diagnosis?
It took a fairly long time to receive the diagnosis of MacTel. Each time I went to an optometrist, stronger lenses were prescribed to help me “see” the missing letters. This strategy mainly resulted in blurry vision. In 2011 an optometrist refused to prescribe a new pair of prescription sunglasses for me because my results were “all over the place.” In 2014, I asked to be referred to a specialist. The first ophthalmologist I saw requested an MRI scan to investigate if there was a physical cause for an interruption to the visual pathway. A second ophthalmologist correctly diagnosed me with MacTel.
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?
After my initial tentative diagnosis, I looked up MacTel on the internet. Fearful about what I read, I hoped the diagnosis would not be confirmed. I was referred to another specialist for confirmation and further testing. The words “macular telangiectasia” were written on a scrap of paper and I was told to go home and research it on the internet. I was advised that there was no treatment and no cure. Since my diagnosis, I have tried to read everything I can about MacTel on the internet.
On Living with MacTel:
What is your biggest challenge in daily life?
Reading is a challenge, and that affects many aspects of my life. I no longer have dinner parties as I find I am too embarrassed to serve up meals after I have added incorrect quantities to recipes, or have omitted ingredients. Grocery shopping is complicated as I am now unable to read the ingredient labels. I erroneously purchased and used fabric softener instead of liquid washing detergent for many weeks. Looking up phone numbers and phoning people creates a lot of misdialed numbers as I don’t realize that numbers are missing. I do have a big button phone with a few speed dial numbers entered into it. Reading text smaller than 12-14 point font size is a struggle, however the mind can usually work out the meaning even if letters in a word are missing. My reading speed is slower, and I find that I often need to reread sentences to get their correct meaning.
Even though I still have a driver’s license, I rarely drive. At night many of the cars coming towards me appear to only have one headlight, so feel like I only see part of a car. If absolutely necessary I will drive during the day, but only on a bright sunny day for a very short distance on quiet roads.
Walking for leisure in unfamiliar surroundings is a challenge because I am fearful of tripping and falling. Ground that is not level due to pavers, concrete, tiles, holes and gutters have resulted in many falls. I find it difficult to perceive small changes in the surfaces of shopping malls and footpaths. I usually push a shopping trolley/cart as soon as I enter a mall as it helps to prevent falls.
Unfortunately I have had to stop playing duplicate bridge at the club level because I often miss seeing a card when playing five card majors or don’t see all the cards when counting high card points. I miss the social interaction with like-minded people but not the quizzical looks from my partner when I display my hand. I have tried larger print playing cards and the card holder, but that doesn’t help if the card is in a blind spot.
How have you adapted your lifestyle to overcome these challenges?
Cooking and shopping: At first I stopped cooking from recipe books because I was making mistakes, adding the wrong quantities and omitting ingredients. However, my vision quality has somewhat improved after going to a new optometrist who reduced the strength of my prescription. He accepted that I couldn’t see all the letters on a line because they ‘disappear’ and not because I needed stronger lenses. With a better prescription I am able to shop more easily, though my husband still reads the labels. I now shop for the fruit and vegetables while he does the shopping that requires good eyesight. I find using a company that offers calorie controlled meals is a good alternative to cooking and takes away the frustration of trying to grocery shop. We eat out regularly but I familiarize myself with the menu on the internet before we get to the restaurant.
Fine vision tasks: I use an electronic reader (Kindle) for books; a handheld magnifier with light for labels and price tags; a magnifying mirror for makeup; a magnifying lamp for reading product descriptions and for sewing/mending. As I now live in a gated retirement community, I request all newsletters to be emailed to me. I use black marking pen/labels to identify similar items. To differentiate jars of minced garlic and ginger, I place a rubber band around the garlic; similarly for shampoo and conditioner a rubber band works well.
Computer: I have a large computer monitor and magnify everything 175% at this stage. I prefer to keep in contact with family and friends via email or Facebook. I am slowly learning how to have face to face talks with family members through the computer.
Television: We have purchased a large flat screen and I can read some subtitles of foreign movies.
Driving: I have basically stopped driving altogether.
Walking: Extra care must be taken to avoid tripping and falling. I hold my husband’s hand whenever walking on unfamiliar ground. When needed, I use the toe of my shoe to touch the ground before venturing further.
Although I had to give up playing duplicate bridge, my husband and I are now enjoying learning ballroom and Latin dancing. We were awarded our bronze composite medals last year and are working towards our silver medals.
Has having MacTel impacted your work? Your family life?
I am retired from teaching secondary science. Prior to retiring, I did notice that I was having difficulties when entering student marks onto spreadsheets and databases; and had difficulty driving at night to adjudicate debating.
Fortunately my main hobby is family history and the computer is a very helpful tool for my research. I also enjoy doing crosswords with the larger print puzzle books.
My diagnosis was very timely; my husband and I were looking to downsize and sell our large house and hobby farm. We were lucky enough to find a modern retirement village which ticked all the boxes. There are no steps, very high ceilings, and good natural lighting. It had most of the features listed for people with low vision, which I found on the Vision Australia website. I am able to walk to a medical center and pharmacy. It is an easy walk to a leisure club with restaurants, function rooms, swimming pool and exercise center.
My husband takes an active role in helping me to overcome any challenges although I worry that I am becoming too dependent on him.
Are there specific environmental conditions that are visually challenging?
Low light situations are problematic, as is moving from bright light to shadowy areas. When we moved into our new villa, extra lights were added to a number of rooms. Sunglasses are used to reduce the glare on sunny bright days.
Do you have any advice for someone newly diagnosed with MacTel?
When I was newly diagnosed I was very fearful of what the future would hold, so be positive. Use the internet to educate yourself about MacTel. Try using humor to educate your family and friends about MacTel. I like to have fun with the “words” I see on billboards. If MacTel takes away a hobby or activity you enjoy, find another that is not dependent on good eyesight. Take advantage of technological gadgets that can assist people with vision impairment.
Take the time to familiarize yourself with web sites devoted to the vision impaired, such as Vision Australia. It has so many hints about learning to live independently. Look for online MacTel buddies who will share and support you when needed. Keep learning new skills, developing new friends and get out and about in the community.