Category: Personal Stories

Hike and Bike

Morning! I thought I was getting my routine back but I apparently was not totally accurate. I will be able to be in my exercise routine for a week – 7 days – and then it falls apart again. The Y is closed next Saturday for spring cleaning! Grrrrrrrrrr!!!!!!!!!

Maybe I can talk my husband into loading me and the bike into the car and taking me to a local rails to trails. Assuming they are all over the US but for our international readers, the United States made the (foolish) decision to send much, if not most, of the goods and people transported in the country by trucks and private cars. That left thousands of miles of abandoned rail beds. Many of them are being turned into walking and biking trails. Since there is no motorized traffic allowed on them and very few crossings, they make good places for low vision folks to exercise.

According to the website there are almost 23,000 miles of rails to trails in the country. I would be surprised, if you are in the USA, if you were located very far from one of those. There are four, two of them quite long, within 45 minutes of my house.

The two shorter ones are going to be connected soon. There are efforts to connect sections of trail all over. Or at least that is my understanding. That means people will actually be able to do bike trips of several days long if they wish, and they can do them on safe, easy riding trails.

Or, they can go out and back on a two-mile trail like I have generally done. However, in my own defense, that was when I had good vision and I could ride my bike almost three miles to get there.?

My biking goal for the summer is to get someone – anyone! – to take me to the D&L (Delaware and Lackawanna, my grandfather was an engineer for them) trail. The section I have ridden and intend to do again is 26 miles long and goes from White Haven to Jim Thorpe.

26 miles sounds impressive, but it is not as bad as you may think. This section of trail is almost totally a 1% downhill grade and an easy ride. That is a good thing about rail beds. Often with only one engine and upwards to 100 cars, you did not want to be going up or down hills much steeper than that. Most of the rail beds, in Pennsylvania at least, have very easy slopes. (Slope is rise over run; remember?)

Canada has the Great Trail. I know nothing about it except the website says it is extremely long, 24,000 km which translates to approximately 14,600 miles. Sort of sounds like the AT on steroids. Check out the section you might be interested in for accessibility data.

The AT, Appalachian Trail, approximately 2,000 miles, Maine to Georgia. The section I know is a true ankle breaker and I would not recommend it for people who cannot see their feet. To prove my point? A blind man who hiked the AT was written up in extreme sports magazines! That was Trevor Thomas. He hiked the AT in 2008.

He was not the first, though. Bill Irwin, also blind, hiked the trail in 1990.    [Lin/Linda: Here’s a YouTube video from behind the scenes of the movie about this called ‘Blind Courage’ which is to be released in 2017.  Click here to get the book that he wrote called Blind Courage – it’s available as a Kindle e-book or through his website link.]

That said, there are easier sections. Check out your local section online or talk to a local hiker. A little research, a few modifications and my guess is you can get out and enjoy. Have fun! Continue reading “Hike and Bike”

Happy 1st Birthday, Website! Feb. 25, 2017

Linda here: One year ago today I published the first page from our website (the Facebook group started in May).  There would be no reason to do what we do if it weren’t for the people who subscribe to our email updates and who are members of the Facebook group.    I asked our very first website subscriber to share her experience.  She’s an active member of our Facebook group as well.

Thanks for your continued support, Sharon Hynes!

Hello Everyone, I am a faithful follower of the website and of this amazing group and with the one year anniversary approaching of its inception, I would like to take this moment to recognize the contributions of the founders, Linda and Sue. Through their direction, this truly has become an interactive forum where every member has the opportunity to voice opinions, share stories and offer valuable information. Everyday people from many cities and countries ask Linda questions, knowing she will do her best to provide us with the latest research available. Then let the discussions begin! Informative, fun and yes, sometimes a few tears.

Sue’s inspirational stories are heart warming, such as her determination returning to work and travel after vision loss, certainly encouraging to others attempting to do the same.

I have learned so much in one year! The right foods to eat, vitamins, lighting, apps for my iPad, the importance of exercise, genetic testing, educational videos…..just to name a few. The home page is a wealth of information and easily accessible. Honestly, I have found no other site like it.

Four years ago I received my diagnosis. I was 58 years old working as a nurse in the ER and considered myself healthy but something was not quite right with my eyesight especially on cloudy days or at night. I was immediately shocked and humbled when I heard the words, ‘Macular Degeneration’. I am the type of person who likes having control and being prepared. Well, there is little control with dry AMD but through this site I have learned to be pro active with positive daily choices. In am presently in the early to intermediate stage of dry AMD with thinning retina edges exposing me to possible detachments.

There is still uncertainty as was four years ago, but I am no longer afraid. I first began with this group simply as a way of researching my questions but after one year, I must confess I stay because of the human spirit that is felt between the words.

Continue reading “Happy 1st Birthday, Website! Feb. 25, 2017”

Our Guest Authors: Their Stories

Facebook Pages & Groups & Blogs by members of our Facebook group.

We have a growing list of Facebook group member-created and member-maintained blogs, Facebook pages and groups. If you have one you’d like added to the list, please let me know.

2019 Our Cub Reporter: Notes from an Awareness Program by Joann Davis

2018 Our Cub Reporter: Notes from an Awareness Program by Joann Davis

Surprise and Hope by Cliff Tiedemann

MYopia, My Journey: Part 3 Advocate for Yourself

Advocate for Yourself by Andrea Junge

Retina specialists are obviously very intelligent. Very intelligent and very busy. Every time I go in, the waiting room is FILLED with people. Personally, I’ve had experience with two retina specialists, and I think it’s important to tell you about both.

Both are very intelligent men doing a very important job. Aside from doctors helping cure terminal illnesses, what could be more important than helping people preserve their vision? Both specialists knew, medically, what to say to me. Both gave a diagnosis, listed reasons to come back (flashing lights, curtain coming in from any side of the eye, black pepper spots…), provided suggestions for supplement, and delivered the news of no cure.

The difference between the two specialists is empathy. I’m admittedly very emotional at the specialist office. How could I not be? All of the doctors rush in to look at my eyes because I’m so young. They mistakenly think I’m the patient’s daughter (my mom always accompanies me to these visits), and when I look around, I think why am I here? I’m too young for this.

The first specialist didn’t have great bedside manner, and I was okay with that until I went in to see him one time because of a noticeable increase of flashing lights: taking off work, and paying yet another $50 copay…and instead of dilating me and looking into my eyes, he simply told me that my eyes were fine, that I was worrying too much (he was right about that!), and that I needed antidepressants (wrong!). New specialist coming right up!

When I went to visit my second and current specialist, I could tell he cared how I felt, and that is so comforting. He still cannot cure me, but he makes me feel calm. Long story short, he found a tear in my retina (the tear my original specialist may have found if he dilated me instead of trying to prescribe antidepressants).

Always advocate for yourself.

Every time I leave the retina specialist’s office, I leave with questions and wonder. I ask questions while I’m there like, “Is running safe for my eyes?” Both specialists told me not to stop running, exercise is healthy for your eyes, right? Well, neither specialists are runners (I asked), and they can’t possibly understand the constant pounding of the eyes with every step I took. I stopped running anyway.

Always advocate for yourself.

Both specialists suggested Preservision AREDS2 [Lin/Linda: please read the Caution below], but neither told me that a certain percent of the population who takes this supplement is at risk for zinc actually HARMING their eyes. I researched this myself and good thing I did, because I’m in that certain percent (lucky me…). In fact, my awesome, empathetic specialist told me NOT to have the genetic testing done and suggested I buy Christmas gifts with saved money instead. (wrong!).

Always advocate for yourself.

Two months ago, I was a runner who took too much zinc, with a tear in my retina. Now, I’m a walker who doesn’t take zinc, with a fixed retina…because I always advocate for myself.

One other thing I learned by researching myself is that I will not ever be completely blind as I had envisioned when I was first diagnosed. Nobody wants to lose their central vision, but doesn’t that seem a whole lot better than going blackout blind? Shouldn’t one of my retinal specialists explained this to me?

Always advocate for yourself.

Contact information for ArcticDx the company that did the genetic testing

If you are on the fence about getting the genetic testing done, I can tell you that I am so glad and proud of myself that I did. Knowledge is such a powerful tool, sometimes our only tool. Just think…if I didn’t have the genetic testing done, I’d still be taking zinc and harming my eyes instead of helping them. That’s devastating.

[Lin/Linda here: click on the image to the left to go to the webpage for ArcticDX, the company that did Andrea’s genetic testing].

Caution

Neither the AREDS nor AREDS2 supplements were tested with those with Myopic Macular Degeneration for safety and effectiveness. These are high doses of vitamins and minerals and without research with this particular type of macular degeneration, we feel that taking them is not advisable.  Since MMD affects people at younger ages than AMD, taking these supplements over a LONG period of time could do harm…we just don’t know. Andrea was right in doing her research. Regarding the effect of high doses of zinc on MMD, we don’t know if the same risks apply.  Andrea was smart to do her research on that as well.

 

Continue reading “MYopia, My Journey: Part 3 Advocate for Yourself”

MYopia, My Journey: Part 4 Jail the Joy Thief!

Putting My Joy Thief in Jail by Andrea Junge

Even though I am still scared, I know that I have tools to help me get by. I have control over my emotions (I can cry if I want to!) and I am in charge of what I allow for myself. It’s time for me to get over it. This will be what it will be and I refuse to allow my extreme myopia to take my joy from me anymore.

I’m locking this thief up. Life in prison. Death sentence.

Now, I try to tell myself that my bazillion floaters and my blind spot are there to remind me to to take in all the joy while I can. I tell myself that in 10 years there will be so many new devices and low vision aids and my life will still be great. I allow myself to be upset once a day, as soon as I wake up. Sometimes this works, and sometimes it doesn’t – I am still a work in progress. When I feel sad and overwhelmed, I remind myself that life is good. It really is. My children and students need me to be present. My husband needs me to be happy. I need to be strong. I need all of the joy I can find. Every single moment of it.

Maybe someday I will be better because of this: a better mother, better wife, better teacher, better daughter, better friend perhaps? Maybe all of this can be a blessing in disguise. I’m not there quite yet, but I hope to be someday soon.

When Linda asked me to write a page for the Website, I jumped at the opportunity. I know that many of us have different eye ailments and are at different stages of our lives, but we all have so much in common. This group has given me so much strength and knowledge, I absolutely love how we learn from each other and feel genuinely concerned for our different, yet failing eyes. I would like to say thank you to everybody who is helping me along my journey.

Wishing you all a healthy JOY-filled 2017. Each day is a gift.

Continue reading “MYopia, My Journey: Part 4 Jail the Joy Thief!”

MYopia, My Journey: Part 2 The Joy Thief

The Joy Thief by Andrea Junge

Myopic Macular Degeneration is stealing my joy.

I recently stopped running, something I loved so much, because the pounding posed threat to my fragile retina.

Joy stolen.

I am blessed to have a wonderful loving and supportive husband, am raising two beautiful and healthy sons age 8 and 5, I have amazing and supportive parents, caring friends and coworkers…and am still struggling with the dark visions of my future…even though my ‘now’ is really, really great.

Joy stolen.

I’m struggling. Big time. I cry a lot. I pray a lot. I complain a lot. I research a lot. I feel sorry for myself a lot.

Joy stolen.

The only thing that makes me feel any better right now is knowledge.

Knowledge and what I choose to fuel my body with each and every day gives me a strange sense of power. I am researching and learning everything I can about eye health, nutrition and supplement. I eat spinach and arugula (gross! Seriously, it’s not good), orange bell peppers, and blueberries EVERY.SINGLE.DAY.

Joy stolen.

I am a work in progress. I’m learning that, for me, this is a grieving process. I’m grieving the loss of my vision before I’ve even lost it. I’m grieving the changes to the future I had planned for myself before these plans have had a chance to come to fruition.

Joy stolen.

Recently, my eyes started showing me just how ‘sick’ they are. A few months ago, I had to have laser surgery to repair a tear in my retina and my blind spot seems so big. I have a bazillion floaters and flashing lights and any slight change rushes me into the overcrowded specialist office that is filled with people more than twice my age. I cry every single time I’m there, but I am gratefully still able to live a pretty normal life. I can still work, drive and read. I can still see my children’s beautiful faces. Yet I’m sad because I feel like I’m losing the battle.

Joy stolen.

I have oodles of sunglasses, technology glasses for myself and my children. I know which supplements I should take and which supplements they should take. Sometimes more than myself, I worry about my children. Will they have this disease? How can I help them now? Is Evan wearing his sunglasses? Did Wyatt swallow his vitamins or hide them?

Joy stolen.

I’m having to relearn who I am and what I will and won’t allow for myself. I don’t know all of the answers to my problem, but I do know that my worrying will inevitably become regret someday if I allow it to continue to rob me of the joys in life that I love so much.

It’s a new year and my resolution is to stop this joy thief.

Continue reading “MYopia, My Journey: Part 2 The Joy Thief”

MYopia, My Journey: Part 1 MYopia

MYopia by Andrea Junge

At the mere age of 26, I was driving to work and thought, hmmm…

I was seeing what I didn’t know at the time was my very first blind spot. I was 8 weeks pregnant with my first child and assumed it was some kind of weird pregnancy symptom. It had to be, right? Unfortunately, it was the beginning of what I now know is myopic macular degeneration, probable central blindness, a different future than I had planned – much earlier than feels fair.

Myopic Macular Degeneration basically mimics AMD, only much sooner in life. It is a fairly new diagnosis with no cure.

I have always been extremely myopic. I got my first pair of coke bottle glasses at 5 and I was okay with it…until that first blind spot reared its ugly head and I learned the extent of my extreme myopia and what that really meant. Right away, I started grieving the future I had planned for myself and for my growing family. Everything I envisioned for my future turned into these scary mental images of me sitting in bed crying, in the dark, alone.

As time went on, there wasn’t any noticeable change to my eyes. For almost 8 years, I had so little change that I didn’t even think about it much anymore, and my miraculous brain had even hidden my blind spot! My family grew, life went on and then BOOM! In May of 2016, as I was reading to my students, I noticed my blind spot again and realized it was bigger. My heart sunk into my stomach. I knew this was not good.

My name is Andrea Junge, I am 34 years old, and am losing my vision. That’s not easy to admit. The last 7 months have been filled with specialist visits, surgeries, tests, research, education and a lot of worry and anxiety.

I am a very sentimental person. Every memory my family makes is documented with a picture so I can relive it all whenever I want. I am that mom who holds onto her young children for dear life because watching them grow up is amazing and hard all at the same time. I am a planner by nature, and this disease is not something I planned for. I am truly grateful for every day I wake up and can see, but I am so scared.

Losing your vision is frightening. There is so much unknown. I think about it all the time. I worry all the time.

written January 2017

Andrea Junge is 34 and has extreme myopia. She has struggled with vision her whole life, but was recently diagnosed with myopic macular degeneration. She and her husband, Chris, are raising two young boys who love to play soccer and video games, explore nature, snuggle with the family’s two dogs: a dachshund and a pitbull, and play board games as a family. Last summer, the Junge family moved to the small town where Andrea has taught third grade for 13 years. She is lucky enough to bring her sons to school with her every day, where they are taught by her supportive coworkers and friends. Andrea enjoys nothing more than being a mom and strives every day to be a loving wife and caring teacher, while learning how to maintain a healthy lifestyle in attempt to preserve her vision. Andrea is an early riser. She wakes well before everyone else in her family to get outside and exercise, all year long. Fresh air helps Andrea clear her head and start her day in a healthy, positive way.

Continue reading “MYopia, My Journey: Part 1 MYopia”

Tales from the Wet Side: Part 5 Not Afraid

Why I’m not afraid to be blind by Jennifer Poole

Please don’t get me wrong, I am going to do everything in my power to overcome Macular Degeneration. I think losing my vision would be one of the worst things to happen to me. I need my eyes for all the things I like to do, and the things that I’m good at doing. And like so many of us, I simply must continue to see the faces of my loved ones. I must. However, if I ever become visually impaired enough to be legally blind, I am not afraid.

I have several excellent role models to teach me that life doesn’t end with disability. When it comes to blindness, I look to my Grandpa. At 10 years old, young Peter was hanging out with his friends in a field near a construction site for a new factory. They came upon a metal box, shaped like a suitcase with a big lock on the front. Dying of curiosity, first one boy, then another tried without success to open the box. They started taking it in turns to throw it against the concrete to bust it open. When it was Peter’s turn, the dynamite that was stored inside exploded, completely damaging one eye and blinding him in the other eye. He could only see shades of light and dark in his one remaining eye.

My Grandpa used to take my brother and me down to the grocery store to buy food for my Grandma, who was usually cooking. We crossed the street, entered the store and did business there, without ever considering that he couldn’t see.  As a small child, I felt confident that a capable adult was with us, and would keep us safe crossing roads and greeting people as we went by. He would spend time with us in the garden, teaching us how to know that the cucumbers were ripe and ready for picking, and that fresh dill is one of the best smells on the planet. He taught us about baseball, which he listened to on summer nights on the radio. And like a magic trick, he could pull money out of his pocket to give us, never really understanding the tricks he used to differentiate the bills and coins.

My Grandpa had a full life, a wife, a job, a home and three daughters. He struggled more than the average person, I can see that now that I am an adult myself. He knew me by voice and often caressed my face. To us, he was never ‘not able’, and he loved us as much as a grandfather ever could. I pray that I never need to face that hardship, and I pray everyone affected by macular degeneration can reap the benefits of treatments and cures in the future.

But if I do go blind, I will not be afraid. I will live. I will live like he did.

Continue reading “Tales from the Wet Side: Part 5 Not Afraid”

Tales from the Wet Side: Part 4 The Future’s So Bright

The Future’s So Bright I Gotta Wear Shades by Jennifer Poole
The title is a one-hit-wonder by a band called Timbuk3 in 1986. The songwriter claimed it was written with a grim intent, having to wear shades to protect from the effects of nuclear radiation after war. Since I love to sing and co-opt songs for my own purposes, I’m wearing my shades to shield myself from a bright future of treatments for macular diseases of all kinds. Plus – wearing sunglasses is important retinal protection.

After recently discussing my treatment options and future with my retinal specialist, he agreed to make some changes to the frequency of treatments, to hold the fluid leakage at bay. Afterward, he spoke to me intently to make these encouraging points:

  1. My response to Lucentis is very good, and my visual acuity is still good with glasses, so he isn’t concerned with my progress to date.
  2. He very clearly stated that the current treatment options for wet MD are about to change, within years. He talked directly about new medicines that are more effective or combinations that work more effectively together. And the development of slow-release mechanisms where treatment can be given at long intervals, like a year, and drug exposure is constant through that time. This is coming soon!!
  3. Other research going on, (very vague and I’m assuming he’s referring to stem cells or other unconventional treatments) is very active and the options in the next many years is going to change a lot.

My message to everyone in this group is – Don’t give up! Have hope! The future holds as much magic (science actually) as it did 15 years ago when Wet MD meant blindness, period.

Continue reading “Tales from the Wet Side: Part 4 The Future’s So Bright”

Tales from the Wet Side: Part 3 I’m a Person, Too!

Speak Up to Your Doctor by Jennifer Poole
I don’t know about other Retinal Specialists, but my RS is a VERY busy man. He goes from one treatment room to another, with a packed waiting room outside, gauging disease progression and treatment outcomes for every single person to the best of his ability. It’s no wonder we can become “the next patient” and no longer a person with a life and individual needs. However I’m lucky that he’ll pause and speak with me when I have concerns.
I believe his response is also because I take time to educate myself, I don’t ask for miracles and I thoughtfully present my side of the issue.

I’ve been receiving Lucentis in both eyes for about a year and a half on a treat and extend basis, with me rushing in (at great hassle and delay) to have treatment when I have a visual indication of leakage, that is either distortion or shadowy spots. A recent article posted by Linda confirmed what I have been thinking for a while now. I spoke to my doctor about it in very frank terms.

I said “I am in my mid forties with 20 years of earning potential (and need) in front of me. I feel like I’m risking some permanent damage with every leakage occurrence, if I can be treated right away, or if leakage is occurring but I don’t notice. I am asking if this reactive treatment protocol is the best option for me. Perhaps I should be on a proactive, preventative schedule, where we are keeping the retinas dry to preserve as much vision as possible. Even if there is minor, negligible damage each time, over 20 years and beyond, they will add up to the point that I can’t work, or drive to get to work, which is the same thing.”
Here is the quote from the article: “Studies have found that after the initial monthly dosing, many doctors fall back upon PRN [as needed] treatment and fewer injections. Dr. Brown says he understands why doctors would tend to shift in this direction. “I think both the doctor and the patient get fatigued by the protocol,” he says. “Doctors are certainly aware that patients would prefer to come in less often. On the other hand, most patients don’t want to go blind. So I don’t think you can make a good argument for any paradigm that leads to undertreatment. “As with anything in medicine, you can look at it in terms of the risks and benefits of the therapy,” he adds. “The risk associated with an extra injection is the risk of endophthalmitis, which is about 1 in every 3,000 injections. The risk of a recurrence of the disease is 80 or 90 percent. So it seems to me that the pendulum should always swing in favor of a fixed dosing schedule determined by treat-and-extend.” We briefly discussed it, and he changed my schedule to an exam and injection every 4-6 weeks.
I truly HATE those injection days and having more of them is not my ideal, but neither is slowly losing my vision. Sometimes you just have to do the thing you hate, for the greater good.

Continue reading “Tales from the Wet Side: Part 3 I’m a Person, Too!”

Tales from the Wet Side: Part 2 Making a Living

Making a Living – by Jennifer Poole

Every time I’m in the doctor’s office on injection day – he does planned injections only on Thursdays – I’m amazed by how many people are in there. There are so many of us with Wet MD. I take some small comfort in knowing that many others will be home that night, trying to ease their scratchy, achy eyeballs, just like me.

Almost all of them are older than me, and most of them look old enough to be retired. Many of these people have driver/companions my age.

And there’s me. For those of us with wet MD and still working and raising kids, getting injections can be a very time consuming and complicated thing to factor into your life. Every 4-8 weeks or so, I need to try to fit an injection and recovery day into my work schedule. Sometimes the injection is not planned, if there’s been a fluid leak, so I need to try to plan projects at work to continue around my absence, and schedule testing dates and meetings for when I can be present. I must use up vacation time for any missed work days. To minimize this, I try to get the latest appointment they have, so I can work most of that day first. The medicine leaves a big black blob in my vision until later on Friday, so I don’t feel safe to drive or be around the equipment at work and usually book that day off.

Only my immediate supervisor knows about my condition, so I find I’m avoiding questions and comments from coworkers on being off for another long weekend. For unplanned injections, I have fibbed about why a hot project is delayed by a couple of days. Don’t even ask how I explain away my bloodshot eyes for the week afterward! My husband also has to take time off on my treatment days to accompany me and drive me back and forth. Thankfully, his company is very understanding and lets him go without question. I know he feels bad leaving them short-handed at times, but I do need him there with me.

I can’t drive that night, so I need to make arrangements for my son to get home from cadets by cab. At my expense and worry of course, he is only 13 years old. If my husband stays home to pick him up instead, then he is abandoning his bowling team on a regular basis. I don’t want to complain too much. I am so grateful to have the medicine that works to keep vision loss at bay.

I will make these accommodations gladly in order to have the treatment. I just sometimes wish I was retired too.

Continue reading “Tales from the Wet Side: Part 2 Making a Living”

Tales from the Wet Side: Part 1 Too Young

“You’re too young for this!” By Jennifer Poole (see her biography at the end of the page)

This is what I hear nearly every time I go to my retinal doctor’s office on injection day. At 46 years old, it’s comforting in a way to feel like a youngster in the room. That hardly happens anymore! I can think of twice when I saw someone younger than me and my heart breaks wondering what their future holds. I wonder what my future holds.

I used to joke that once you hit 40, it’s all downhill. In my 40th year, I was diagnosed with fibroids, had an infected tooth removed and was told I had Age-Related Macular Degeneration. Age-Related?? At 40? I felt better than I had in years though, and so I kept up my semiannual checkups with my overbooked Retinal Specialist (RS), and didn’t feel too bad about it. Each appointment he would say there was no change, take your vitamins, monitor the Amsler Grid, see you next time. I made some minor lifestyle changes, more leafy greens, wearing my sunglasses and hats, trying to exercise more.

When I was 45, I attended an artist’s retreat in Pennsylvania and near the end of the week, I woke up seeing double. Deep down, I knew what it was, but I didn’t say anything. A little bit of denial going on I think. I needed to see my RS, as soon as I possibly could. Knowing what I know now, I think I would have gone into the emergency room as soon as I got back to Canada. But I waited to see my RS, and had my first Lucentis injection approximately 2.5 weeks after it happened. It was Choroidal Neovascularization, or wet MD. It meant that new, weak blood vessels beneath my retina were leaking fluid and causing a ripple in my retina, which showed up as double vision. A few weeks after the first injection, my double vision finally came together. By the third injection, my colour blindness was gone and the grey spots were transparent again.

It has now been 18 months, I continue to receive injections and my vision is pretty good. I have 20/20 acuity with glasses and a very slight wobble to a few lines on the Amsler Grid. Many months ago, I found this website and corresponding Facebook group and I’m grateful every day for Sue and Linda who open my eyes and mind to so many things regarding these macular diseases. The group members are a wonderful supportive community too, and I’m pleased to share some of my story with you.

Jennifer Poole was diagnosed at the age of 40 with Dry Macular Degeneration. Five years later, it had turned to Wet MD and she began treatment to retain her vision. She is now working to maintain and improve her eye health while trying to keep life as “normal” as possible. Jennifer lives with her husband, a teenaged son and preteen daughter, as well as a dog and two cats in Southern Ontario, Canada. She works as a chemist and volunteers for the organizations her kids are involved in. In her spare time, she enjoys creating art, cycling, cooking and gardening. Her backyard is her oasis, complete with corny lawn ornaments and bird feeders, and she can often be found there, putzing around all seasons of the year.

Continue reading “Tales from the Wet Side: Part 1 Too Young”

Rick’s Story: Part 1

Our guest author is Rick, a friend of Sue’s friend.

I was diagnosed with macular pucker in January of 2016 at my annual eye exam.  I had noticed blurring in my right eye but it still shocked me. I read the NEI (National Eye Institute) write-up about macular pucker and other website reports.  I was sent to a retina specialist outside the area in April.  He advised surgery but I wanted to have it checked in three months.  We did that in July and it had gotten a bit worse though not much.  He sent me to another specialist even farther outside the area who confirmed the diagnosis and recommended surgery. This specialist had excellent references but it would be hard to follow-up with him.

By this time my right eye was pretty bad. My left eye was doing all the work regarding driving and reading.

I decided to go back to my family doctor because if we used doctors outside of the area, it would be logistically difficult for my wife to pick me up.   Sure enough the local hospital had a retinal specialist.

Click here for a video that explains what a macular pucker is.

We met in mid August and one week or so later he performed the delicate surgery.  I was impressed by the local specialist’s calm demeanor and knowledge.  He confirmed everything that specialists in the more cosmopolitan areas had said.  On Thursday August 25th I went down mid morning to an off-campus facility for the hospital. All of the nurses and receptionists were super friendly and supportive. Still, I was overwhelmed by anxiety.

The first hour was numbing the eye with ointment and installing an IV with medication to calm me down.   “You will be aware but won’t care” was the mantra of the helpers. A second doctor came in and checked me regarding the anesthetic. There was concern because I was battling sniffles from a cold.

The retinal specialist came out and initialed above the right eye.  I was wheeled in and the doctor and his assistants operated on my eye.  I could hear them talk but no pain.  They were pumping some drugs into me all the while.  The surgery lasted about 40 minutes. They brought me back out and bandaged up the right eye.

I stopped by the next day for an exam by the specialist.  I am to put two different drops in the eye four times a day and keep the eye covered at night. I understand that the specialist did 4 macular surgeries similar to mine on Thursday.

I don’t see a lot better in the right eye but see about the same. The retinal specialist said that it would take a month to improve. A little discomfort but no major pain.   God Bless the retinal specialist and our local hospital!

Continue reading “Rick’s Story: Part 1”

Accessibility by WAH