macular degeneration, macular, diagnosis Highlight – My Macular Degeneration Journey/Journal

Sept. 2019 – Our Cub Reporter: Notes from an Awareness Program Page 2

by Joann Davis continued from Page 1

The final presentation by Dr. Mali was “New Treatments & Innovations for Macular Degeneration & Diabetic Eye Disease”.  

  1. Iluvien – Steroid implant for DME.  0.19mg fluocinolone acetonide intravitreal implant lasts for 3 years, provides daily treatment, and provides 15 or more letter improvement at 24 months.
  2. Brolucizumab  – Anti-VEGF  that is more powerful than existing treatments in controlling bleeding.  Studies show over 50% extend to 12 weeks. May get FDA approval this year.
  3. Abicipar Pegol has a new molecule – DARPin – and has allowed over 90% of patients to go to 12 weeks with stable vision.  May get FDA approval next year.
  4. Faricmab – another new molecule – Anti-VEGF & ANG-2 combo injection.  In trials has extended to 16 weeks.
  5. PDS – Port delivery with ranibizumab (Lucentis).  This is exciting, as it uses a refillable implant that lasts for 6 months.
  6. Stem Cells – Early trials for Wet and Dry AMD have proven safety.  Next trials will attempt to prove effectiveness in replacing damaged cells.
  7. Gene Therapy – This has been proven to work with other retinal conditions and is in early trials.  A virus modifies cells to produce proteins lacking due to gene not working properly. Approved for retinitis pigmentosa.  One goal is for your cells to make their own anti-VEGF protein.
  8. Future Home Monitoring – Home OCT for wet AMD to pinpoint need for next shot.  Prototype has been built and FDA approval could be in next 2-3 years.

Dr. Mali ended with an Infomercial for the Mali Eyeglass Holder for Slit Lamp Microscope and Table.  He invented this and you could use it at home to store your glasses anywhere you can use a clamp or Velcro to attach the eyeglass case.  Prices start at $19.99.

Back: Guest Author Pages

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

Your “Our Macular Degeneration Journey” Cub Reporter attended today’s Macular Degeneration Association “Eyes on Sight” seminar in Skokie, IL.  It was well-attended with sponsors offering resources for those with AMD. One big difference from the seminar I attended in 2018, is that ArcticDX is no longer a presenter, and the Founder of the Macular Degeneration Association now states that because the professional associations do not endorse genetic testing or zinc harm, the association can no longer endorse ArcticDX.  This seminar now follows the “Take AREDS2” advice for all with moderate dry AMD and seem to recommend it for all with AMD period.

Larry Hoffheimer  is the founder of the Macular Degeneration Association, a nonprofit which supports AMD Research and Education.  He is a former healthcare attorney and was diagnosed with Wet AMD a year ago.

The main speaker was Dr. Joshua Mali, Medical Director of the association, Larry’s doctor, and an ophthalmologist  and retinal specialist.  

Top 5 Things to Know about Macular Degeneration:

  1.  AMD is a growing problem and the leading cause of vision loss for those over 50 in the Western World.  Dr. Mali discussed the anatomy of the eye.
  2. AMD comes in two flavors – Dry and Wet.  Dry AMD is caused by drusen or “bumps” under the retina which are deposits of waste material.  10-20% of dry AMD patients get Wet AMD. Wet AMD is caused by abnormal blood vessels which grow under the retina – under the “bumps” – and cause scarring.  An AMD patient with 1 wet eye has a 50% chance of a 2nd wet eye.  Advanced dry or GA (Geographic atrophy) is a complete breakdown of the center of the retina and loss of tissue.  It looks like a divot in the top layer of the macular tissue. Wet AMD is responsible for most vision loss.
  3. Risk Factors are Age, Genetics & Smoking.  Smoking is the biggest risk factor we can control and we should avoid second hand smoke and vaping.  Other causes are being Caucasian, UV exposure, diet, antioxidants, cardiovascular disease, and high blood pressure.
  4. Treatment:  Treatment for Dry AMD consists of AREDS2 vitamins, Stop Smoking (also diet, exercise, sunglasses, blue blocking filters, and BS/BP/HPL control.)  Forseehome or Amsler Grid monitoring is very important. ForeseeHome is now reimbursed by Medicare and allows you to monitor more comprehensively at home.  When they did a study, they ended it early, because the benefits were so clear. In the NEI study, 94% of patients using ForeseeHome were able to keep their vision at 20/40 or better.  ForeseeHome uses AI and Telemedicine and it looks like a device for testing at the retina specialist’s office. You use a mouse to click on visual distortions and your doctor is instantly notified of any changes.  This must be prescribed by your doctor.
  5. Treatment for Wet AMD consists of Anti-VEGF Injections of Avastin, Lucentis & Eylea.  Treat and extend is the usual plan, starting with monthly injections.

We had an inspiring talk by a “Patient Ambassador” – Nancy – with Diabetic Macular Edema.  Nancy had a family full of diabetics and 8 kids. She took care of everyone else, weighed over 350 pounds, and almost quit her injections.  She has learned to take care of herself. Lost over 200 pounds, and her eyes are now stable.

Dr. Mali presented next on the Top 5 Things to Know about Diabetic Eye Disease.  Diabetic Eye Disease consists of Diabetic Retinopathy (DR – 21% of diabetics get this eventually) and Diabetic Macular Edema. (DME)

  1. Two Types of Diabetes – Type 1 and Type 2.  Sugar in the blood damages blood vessels all over the body, including the eyes.
  2. DR & DME are growing in prevalence as diabetes cases multiply.
  3. DR is caused by changes in blood vessels which cause fatty deposits and bleeding.  DME causes swelling and is the most common cause of vision loss among diabetics.
  4. DME Risk Factors are high blood sugar, blood pressure and cholesterol. 
  5. DME Treatment was formerly only lasers, but now DME treatment is the same as Wet AMD treatment – Anti-VEGF injections.  Some laser treatment is still used as well as steroid injections. DR treatment is PRP laser treatment, steroids, Anti-VEGF injections and surgery for advanced retinal detachment.
Next: Page 2 of Our Cub Reporter: Notes from an Awareness Program

UPDATED: Top 10 Low Vision Aids for AMD

original post February 2016, updated March 2017

I found this article to be a good example of the kinds of non-computer low vision aids that are currently available but it is in no way all-inclusive. I’m guessing that these are products that company specializes in but are available elsewhere.  Check out our Resources page under Coping with Low Vision for more links to low vision aids.

– Linda

Top 10 Low Vision Aids for AMD 2017

Top 10 Low Vision Aids for AMD 2016

Time to Hibernate

Spring ahead. Fall back. In real-time we are one week past the return to standard time. It is dark out there.

Last week, one day after the clocks were turned back, there were only three students in hip hop! It was weird. Where was everyone?

My husband says I am eating red meat more than usual. I notice I can sleep ‘forever’. At 63 I recognize the symptoms. No big deal. I am getting ready to hibernate.

Wait. Hold on. Bears hibernate. Also skunks, groundhogs, chipmunks and some bats. And it would appear, some people, too.

NaturalNews.com reports there is a natural tendency to conserve energy in winter in their article Winter Hibernation and SAD May Be Normal Human Response. Researchers are just starting to think our evolutionary heritage contains the genes for hibernation. Less sunlight increases melatonin production. Melatonin is a sleep hormone; you know. There is even a decrease in the sex drive. If you do the math, a baby conceived in winter will be born in the fall, a time that resources are becoming scarce. Not a plan for infant survival.

Getting even more interesting, the article goes on to say fire was harnessed 400,000 years ago but the oldest human remains are a million years old. That means 600,000 very chilly years! Lots of natural selection time there. Those who were equipped to survive the cold survived.

Then, to add another interesting wrinkle, the article cites evidence Neanderthal DNA may have something to do with our ability to adapt to winter. (You didn’t really think they just went extinct; did you?)

There is historical evidence of cultural hibernation as well. Years ago entire villages in Russia would “close up shop”, only stirring enough to do what was absolutely necessary until the spring.

So, to get around to where I am supposed to be going with this, although it has been an interesting introduction to write, 20% of the people in those villages were said to suffer from some form of Seasonal Affective Disorder (SAD).

Catherine Zandonella writing for the Daily Mail (11/13/16) reported scientists are beginning to believe SAD is an atavistic form of hibernation. To translate that sentence a bit, atavistic means “relating to or characterized by reversion to something ancient or ancestral”. In other words, a throw back.

Seasonal affective disorder is a type of depression associated with the change in seasons.

There are major differences between SAD and other forms of depression. Those with SAD eat and may sleep excessively. Those with ‘traditional’ depression do the opposite.

The bottom line here is people who suffer from SAD may just be highly evolved and in tune with the natural world. They may be responding the way we were meant to respond in order to survive.

But there is a small problem. We are no longer expected to gather in our caves and sleep the winter away. Survival now involves a new set of skills. We are supposed to be bright-eyed and ready to go in all seasons.

Solution? Well, SAD responds to full spectrum lighting…. which can negatively affect AMD. Ooops.

Looks like I am back on topic. Continued next page.

written 11/14/2016

Continue reading “Time to Hibernate”

Need to Be Needed

Hi, how is everyone?

I am doing alright. Wasting a beautiful Sunday. I need to actually DO something!

…..OK. Back again. I have gotten the plants in from ‘summer vacation’ on the deck, cleaned a bathroom and put in a load of laundry. I hate housework but I have to say one thing about it: there is always something small to do to get you started. Breaks through the inertia.

After I cleaned a little, I took the Beastie Baby to the ‘beach’. Just about her favorite thing in life is going for a walk. She loves her Mommy at least in part because I do these things for her.

Since I am no longer driving, walkies have become either neighborhood strolls or ‘adventures’ taken according to her Daddy’s schedule and whim. I have gotten a little distressed at times because I don’t feel as if I am doing good enough a job in satisfying the Baby’s needs. We used to be able to go adventuring nearly every evening.

People say they what to be independent and have no responsibilities to others, but I would say that is pretty much untrue. I think being needed and being able to do for others are pretty basic desires in people.

I looked for scholarly articles on being needed and I got pretty much nothing. There were articles about being pathologically needy. There was even an article talking about how some counselor tried to convince an elderly man he was not “supposed to” miss feeling as if he were needed and contributing. Really????? What was all that about?

Since most of the articles talked about how ‘bad’ it was to want to be needed, I started to think I was wrong. Then I recovered my wits ? and decided, of course I am not wrong! My terms were wrong!

I started looking for things that talked about the desire to be useful and only got slightly further. There just does not seem to be a lot of scientific information on the desire to be useful. Sort of surprised me because I consider being able to do for others a great way to build social relationships and self-esteem.

I finally ended up looking at philosophy and religion. It may not be scientifically validated but I tend to believe what this guy has to say. Specifically, he remarked he starts every day with a simple prayer: to be useful to others. He says he has a desire to be helpful, to assist others. He sees it as a way to serve humanity. That is sort of his job.

Who is he? Tenzin Gyatso, the 14th Dalai Lama. He is believed to be the incarnation of compassion, literally.

Not bad company over all. And by the way, the Dalai Lama is 81 years old( 7/6/1935). Who says older (and slightly the worse for wear) people should not want to be useful? Continue reading “Need to Be Needed”

Memories

[We haven’t done a song shout out for awhile so here’s one: Memories – Elvis Presley]

I admit it: I got a little confused about exactly how much I was spending in Iceland. I got particularly concerned when I got home and discovered a message from a tradesman I had written a large check to before we left. OMG. Did I spend so much on vacation that the check bounced?

Fortunately, the check had not bounced. I had made a typical (for me) low vision error and written the check for the wrong amount. I still have money, praise be.

It got me thinking, though. I have been feeling a bit entitled these days. Part of the reason we did Iceland this year and not next was my vision. I feel entitled to go and see places. I may be on a countdown! I would like to have these experiences now while I can still see things.

Intellectually I know I have five other senses with which to explore the world, but emotionally? Vision is the one that matters to me now. Will this feeling I NEED to have some of these experiences immediately lead me to some sort of ruin?

On the positive side, awareness is the first step towards solving any problem and I am aware. I am not going to go on a wild spending spree and not be aware of what is happening. Awareness would lead to monitoring and regulating what I am doing. My executive functioning skills are decent.

Even if I do spend it is a positive in that I want to blow my money on the ‘right’ things to increase my long-term happiness. I want to buy experiences.

Researchers at San Francisco University discovered people who spend money on experiences rather than things were happier and more often feet the money was well spent. Part of the reason for this is you get used to possessions and the thrill is gone. But, other reasons have to do with characteristics of experiences themselves.

For one thing, we are the sum of our experiences. Experiences become part of you and help to shape how you see yourself and how others see you.

Also, many experiences are shared. Common experiences and memories help to keep people together and relationships healthy.

Another reason for investing in experiences is even negative experiences can become positive memories. I would tell my nephews the disasters make the best stories and I still believe it. Take it from the woman who was almost electrocuted by her garden hose!

While I have been talking about expensive trips, experiences can be pretty modest and still have a lasting effect on your level of happiness. A collection of three or  four, modest experiences may provide just as much pleasure as one, big experience.

It may also be prudent to rent or borrow the means to have your experiences. Financially my husband and I are OK. However, I have been fortunate enough to know people who are financially comfortable and willing to share. For example, a friend sent me a photo of a group of us at a 2006 Earth, Wind and Fire concert in Atlantic City. Our good time was made possible because we were invited to stay in friends’ beach house.

So, yeah. Right now the checking account has taken a pretty good hit. ($7 slice of carrot cake ?!?!? OMG). Glad we did the trip, though. Iceland is amazing and my husband and I have some good memories of experiencing it together.

I absolutely want to have more ‘adventures’ both before and hopefully after my vision really goes to sh**. For the next few months they just need to be more modest.

That does not mean I cannot dream and plan, however. I forgot to mention experiences also create happiness through anticipation of the experience. My husband already has started thinking about next summer. Something a little more economical like a Central American cruise. No $7 cake slices involved!

What memories do you want to create? Continue reading “Memories”

I Am Woman, Hear Me Roar!

Dependence: the state of reliance on or being controlled by someone or something else. What a pain in the posterior that is!

62 years – or at least from my early 20s to 62 – I was my own woman. Made my own decisions. Kept my own schedule. Went where I wanted to go. All of that is now changed.

Now there is ‘another country’ being heard from. Or maybe even two or three more. I hate it.

What gives these people the right to tell me – or try to tell me – what to do? My dependence does. I now need them.

I am being given opinions about what I ‘need’ and don’t need to do. I ‘need’ to go to work but I don’t need to go to exercise classes. Oh, really??? You may not feel the need to take me but I will get there even if I have to walk. Please don’t tell me what I need. You don’t live in here. I do.

I am having trouble finding anything much on the web about sudden dependence. The common parlance apparently considers dependence to be an addictions issue! However, one article contained the word ‘power’ and that word rang true.

I resent the loss of my power! I resent having power taken from me and I want it back!

Another phrase that rang true was ‘loss of identity’. This is not me. I have likes and dislikes. I have opinions. If I did not like something before I would get in my car and drive away. Why do I have to stay now? I don’t do things this way!

OK. My resentment can make me a bit of a witch. The people whom I am dependent upon have rights too. They don’t have to help me and, truth be told, they are not the ones taking away my independence. It is circumstance. However, if you don’t want or are unable to help me be myself and maintain my power, say so.

Lead, follow or get the hell out of my way. I want MY life and I want MY identity and I will do what I can to try to keep them. Don’t tell me what I ‘need’ to do! If I fail, I have failed on my own terms.

While I am not in the habit of citing people who have no last name, I found something related written by James D. for www.keepinspiring.me. James’s take on things is that lack of control in your life can lead to depression. I quote him because I have seen the same finding other places. James suggests you take steps to control those things in your life that you are capable of controlling. Even being able to control a few things is helpful.

So I keep on keeping on. I will find ways to be me as long as I can. I will find a way to keep at least some of my power. Dependence? It stinks! Continue reading “I Am Woman, Hear Me Roar!”

SightSEEing

I think I have always known this about myself. However, planning this trip and doing the ‘blind travel’ research has really brought it into clear perspective. Specifically, I am a vision snob.

How did I figure it out? To begin with, 10 days in Iceland is expensive! Afford it? Yes, but it would have been easier with more time to save.  Why this year? The original plan was a Canadian maritime cruise that was half of the expense.

The reason we decided to do the Iceland trip this year is because I want to SEE Iceland. Next year I may not be able to.

I admit I have been a bit perplexed by all of the blogs and other asundry offerings on blind travel. What is the purpose of going sight-seeing when you cannot see the sights? Like I said: vision snob.

Since there are accursed many of these ‘blind travel’ offerings there has to be something about traveling without vision. I mean, some of these people are not just a little fuzzy; they are big B blind! What do they get out of it?

I found a post by a woman with very low vision. She was talking about traveling in California. The post was entitled Traveling Blind: A Sensory Experience and that title pretty much says it all. The author, as well as some other blog writers on the subject, talked not about seeing the sights but about soaking up the experience. She spoke of slowing down and being truly mindful (there is that word again!) of everything around you. She spoke of the quality of the air and the differing songs of the birds. She talked about the proprioception experience of riding a San Francisco trolley car. In short, she spoke of the whole person experience of being in a new environment.

The author also talked about being overwhelmed and frustrated on other trips. It sort of sounded like these were ‘sightseeing’ trips. You know, the bus drives past and gives you a ‘photo opportunity’ of something beautiful or historic or awe-inspiring.

If this is Tuesday, this must be Belgium. Too fast paced and definitely utilizing the wrong sense for someone visually impaired.

So, apparently the message is you can enjoy new experiences through your other, five senses (including proprioception) but you have to slow down and experience it first. Sort of a new concept for a vision snob but unless the clinical trials do great things, it might be the way of my future.

I gave it some thought this afternoon. My friend and her husband had me kayaking. Maybe the last time for the summer. After fighting my way up river for about an hour, I turned around and floated back down. The sun was warm, but not too warm. The breeze played over my skin. My hands trailed in the water and I could feel the water passing through my fingers. I heard ducks and geese and a kingfisher calling. Not too bad.

Now I admit I am far from ready to give up my vision – my monocular allowed me to see that white speck on the shore was an egret. Score! – but experiencing my time on the river through my other senses did have some positives.

Maybe these ‘blind travel’ people have something after all.

The author ended her piece with a quote that I am going to steal:

“Certainly travel is more than the seeing of sights; it is a change that goes on, deep and permanent, in the ideas of living.”
Mary Ritter Beard

Continue reading “SightSEEing”

Bittersweet

We leave for Iceland Tuesday. Before we leave we need to close the pool. So today I came home and jumped right in. There is something about realizing something is coming to an end that makes that something more precious. Bittersweet.

This afternoon I got a call from my boss/colleague/friend at the office. She has always owned our therapy dogs. This last one, a golden retriever, and I had a ‘working’ relationship. I loved him. He loved me. Worked out just fine that way.

For the past two months ‘our’ dog was fighting liver cancer. Today he lost the fight and was put down. My friend called before they left so he could hear my voice one more time. Break my heart. Bittersweet.

Things come to an end. Some of you know this better than I. Often we can see that end coming. Talking to a dying dog on my cell phone was not easy. Am I glad she called? Yep. Bittersweet.

Live life like Maxwell House coffee: “good to the last drop.”

“Good bye, Brucie. Aunt Sue loves you.”

Now I am going back into the pool.

Written August 30, 2016

Continue reading “Bittersweet”