Macular Degeneration and Me

Low Vision and High Hope

Archive for the category “Uncategorized”

Report on Mac Degen Trial

It’s been  a long time since I’ve written but now am back to report on the trial drug program I started in May 1916.  This study is for one year and consists of two pills taken each day.  I see the ophthalmologist every 4-5 weeks.  Each visit includes blood tests, a specialized ocular scan, an EKG occurs every third visit as well as exams of both eyes.

I’ve forgotten to mention that my left eye is the one in the trial.  That eye had the ocular wrinkle, the most swelling and the least vision.  I started the trial with an injection of Avastin in that eye back in May.  To date I have not had to have another.  My vision is stronger each time I visit.

I still have issues with low light situations. contrast and depth perception but given enough light, either sunlight or good overhead lighting I am doing quite well.

The study is a double blind and I do not know which of the medications I am taking.  Right now I am preparing for the end of the study and what will be offered to me.  It is possible I can continue the same tablets – I believe that whatever I am taking does work – so I am hoping this is how it will work.

I continue my advocacy – my latest hue and cry is about websites and ecommerce sites that do not provide easy access for those of us with low vision.  Ecommerce sites must provide access to everyone – lesson one.  Brochures, pamphlets, information, websites all need to be easy to read and understand.

Yesterday  I received a digital blood pressure monitor.  The instructions and graphics were in the lightest color possible.  I had to use a magnifying glass to figure out how to use the thing.  I look forward to sending a message to the company and offering my services to work with them.

Your opinions, too, carry a great deal of weight so do not be afraid to fill out surveys or write comments on FaceBook pages or send letters.

See you next time.

 

 

 

 

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Hope For the Future

Today I started a trail study of a drug that may help future generations control macular degeneration.  The goal of this drug, X-82, is to eliminate the need for monthly eye injections by replacing those injections with a daily pill.

I’ve always felt the need to do something that would further research into this most miserable of diseases.  I started this blog to provide information and daily life steps that might help others to address issues and to learn they don’t have to be so afraid.

Now I’ve taken my stand.  I will try to keep you all informed and updated on my personal feelings and any health-related issues.

Although I have not posted very regularly the last couple of years, I am now on the  upside of a full hip replacement and elder care.  I look forward to talking about my progress in this trial and wish you all the best in your journey with mad dgen.

 

The Llama and the German Shepherd

For several months I’d been experiencing loss of facial recognition, especially if the person was in a darker room or had sunlight behind them.  The first time it happened I was stunned, and then disoriented.  An odd feeling for sure.  Then I had to figure out what to say to the person I didn’t recognize.  After the second time I got more comfortable with my explanation and found most people to understand.

The other day I took my dog out for a walk and when I got to the top of the driveway I noticed a Llama and a German Shepherd standing on a lawn a few houses down the street.  My first thought was what an odd couple to be on our street and then, could this be another variation of a  facial recognition disability?  On the other hand what if we did have a strange dog wandering around  the neighborhood?  Safety won the day and we headed back into the house.  Inside, I grabbed my binoculars and perhaps you heard me laughing.  The llama was a newly installed set of white posts and the German Shepherd was the lower trunk of a tree.

In an effort to understand what was happening to me, I read a number of articles about facial recognition disability as it applies to macular degeneration.   Here’s a short description – the brain directs the eye movement in scanning and fixation (the ability to maintain your gaze in a single direction).  People with macular degeneration and some other diseases lose the ability to fixate on the internal features of a face – the eyes, nose and mouth. Their eye movements are different than those with normal vision also.  There is much research going on about this including paying attention to specific internal features and the use of eye movement control training

However my incident with the Llama and the German Shepherd seems to be the blurring of my central vision as my rods and cones die off as well as color loss and more drusen occurring in my right eye.

At a recent low vision exam at NABA I learned about several new products designed to help me see things at a distance. The first is a pair of MAX TV glasses – hands-free, head-mounted, each eye adjustable glasses perfect for watching TV, bird watching, llama checking or sporting events with a 2.1x magnification.  Priced a bit over $100 they are an excellent choice for me.  You can find these and many other products at Eschenbach.

One of the things I’m learning is the amount of new research and products that are on the market or in testing for people with low vision.  It’s almost a full-time job to keep up with what’s out there.  In the next few months I’m considering a huge shift in the focus of this blog.  I’ll keep you posted about all of this but for now let’s remember to laugh at some of the adventures we have.  ‘Til next time.

Ups and Downs Part Two

When I wrote the first part of Ups and Downs the trees were just greening and now for part two the trees are ablaze with color ……. an interesting corollary to my life events.  From  two simple cataract operations, to spiking a seriously high blood pressure, from no medications for years, to daily, strong, annoying meds for the blood pressure, glare blindness, to more swelling at the back of both eyes, to dimming of the vision in both eyes, it’s been several months of ups and downs, ins and outs and days tinged with anger, sadness, loneliness and fatigue.  But I Won’t Give Up on me, to paraphrase a popular song, even though skies get rough.

There’s much to do and more to learn on ways to accommodate and acclimate myself to even lower vision.  I’ve already put several things in motion.  For me, doing something is much more energizing than sitting around ruminating about things although sometimes you have to give yourself a shake.

I’ve written my next post already so it won’t be so long next time.  I’ll talk about my latest low vision exam and how I can see my birds at the feeder again.  Stay tuned.

Ups and Downs

A few weeks back I promised to write more about my experiences mentioned in Twists and Turns.  It’s been somewhat difficult to decide how to keep to my mission of High Hope and still tell about some of the more challenging events of the past 18 months.  So I decided just to do my best to set out what happened and how I responded as truthfully as possibly.

In November 2012 I decided to go ahead with the operation called a vitrectomy to peel the macular pucker in my left eye.  This is simply scar tissue that formed over the macula leaving me looking through an eye with grayish spots in the center of the eye with diminished vision.  I postponed this decision for some time for various reasons; the most important was the poor health of a close family member and the daily care we provided.  However it was time to go ahead with this.

The operation went very smoothly and my recovery was quick.  However the hoped for outcome did not occur.  Because of internal swelling at the back of the eye apparently from the operation, my vision – although the gray spots were gone (that was the scar tissue that was removed) – did not rebound.  In fact now my vision n that eye was completely blurry.

Then began weeks and then months of visits to the retina specialist for injections of Avastin, ocular scans and eye drops.  Felt pretty discouraged some days.  Even my eccentric training wasn’t working.  But I’m not one that entertains negative reactions as a way of life, so eventually I found some middle ground by sharing my story with others.  Comments back from some of you were inspirational and very helpful.

Now I’m really not going to go step-by-step here so suffice it to say, cataracts started developing, first in the left eye, then in the right.  Round about the same time, my arthritis started acting up and I went through an eight month flare-up which left me exhausted and disheartened.  The rheumatologist told me my right hip no longer functioned and that I should consider a hip replacement soon.

Eyes?  Hip? See?  Walk?  Care Giver?  Need Care?  A dilemma for sure.  Somehow all of this made me start to laugh – how bizarre it all was.

A few things kept me going:  a sister who came and helped me with the garden and landscaping I love and convinced me to rest more;  my dog, Salty, who needs exercise and always knows when I’m in pain;  my new walking stick that helped my balance; aquatic therapy; and a husband with patience and grace.

Feeling in better spirits this past autumn, I made arrangements for the two cataract operations.  I scheduled them both two weeks apart and spent October and November getting everything in order so my work, family and community commitments could continue as necessary until I recovered – about 5 weeks after the second operation or the end of January 2014.

Or so I thought!

Second chapter of Ups and Downs to follow soon.

 

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