BIG News!

Woke up with a start at 2 am last night. Probably several things.

First thing that happened was a call from one of my contracts. She had called my third place of employment to schedule an evaluation and was told I did not work there anymore!

News to me! Now, I don’t get there a lot but the plan was for me to go and do a case or two when called. Maybe something like once every six weeks or so. I was never told I was being fired!

Of course it turns out someone got something wrong but it did get me to thinking. Once again, how does one graciously bow out or – hopefully equally graciously – be shown the door? Inquiring minds.

The second thing that has me a little anxious is my big ‘field trip’ tomorrow. I am going to do some sightseeing on Manhattan with an acquaintance from school. First time that far away from home without my husband since my sight loss. I know it can be done, but it is still a little scary.

Third thing: I saw Regillo yesterday. My eyes are getting worse slowly. (I am not so sure about the slowly part!) He confirmed scotomata (aka blind spots) get darker but did not necessarily say they go black. He said that he would not expect a central vision loss to cover 60 degrees of arc. That wide a loss would be ‘extreme’. Those two answers at least get us slightly closer to settling two of my burning questions from this Spring.

The big news, though, is he wants to try me on lampalizumab next winter. It appears the phase 3 clinicals are going to wind down by the end of the year and phase 4 trials will be starting.

People, the numbers of subjects in phase 4 trials is BIG. HUGE! Phase 4 trials take place after the FDA approved the marketing of a new drug. The drug is made available to the public through local physicians. They look for effects and side effects in diverse populations.

What this means for you is simply this: the first actual TREATMENT for geographic atrophy may only be six months away! This is the first breakthrough!

Lampalizumab is an injectible drug. It has been proven to slow the progression of geographic atrophy and to “reduce the area of geographic atrophy” by 20%. Dosing occurs monthly or every six weeks.

Will I do it? Probably. I really believe stem cell replacement of RPEs is the way for me to go, but it is taking forever and I don’t have time for forever. Lampalizumab can be administered locally and would avoid lots of trips to Philly. I don’t like the idea of intravenous injections but I don’t like the idea of a vitrectomy either! A 20% decrease in disease progression might win me enough time (and macula!) to have a more successful intervention later.

If you have dry AMD and geographic atrophy, it might be worth your while to broach the subject of lampalizumab with your retinologist. Let him know you are interested. This could just be the start of something big for all of us.😁

Continue reading “BIG News!”

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Quack, Quack

Caveat emptor! That is Latin for “hold on to your wallet!” (Actually it means “let the buyer beware!” but close enough.)

As of late we have been hearing about ‘medical professionals’ offering services that sound pretty much like quackery.

You know the old saying: if it walks like a duck and quacks like a duck, and looks like a duck, it is probably a duck. The problem is some of us don’t know what one of those old ‘quackers’ looks like.

Ergo, I am offering a short tutorial on identifying the ‘ducks’ among us (Great. Another ‘ornithology’ lesson 😵).

You can find dozens – literally dozens; makes me kind of sad about the ethics level in America – of posts talking about how to spot a quack. Skeptical OB gives a shortlist of six red flags that can be applied across the disciplines. They report quacks make claims of secret knowledge and giant conspiracies. They baffle with bullshit and claim they are so revolutionary they threaten the medical establishment. Claiming toxins in everything is a biggie. Also flattery. You have heard it. How you are doing such a great thing and blazing the path for others? Yeah, that one.

There are also posts talking about how to spot quacks in more specific areas. Quackwatch.com has a list of 26 ways to spot vitamin pushers.

Some financial ways of identifying quacks are listed by USA Today. Reputable doctors do not ask for deposits or cash up front. Potential quacks offer the most amazing – and expensive! – treatment first and don’t even bother attempting other treatments. Not covered by insurance? Be suspicious and ask lots of questions.

To support some of the points in the Skeptical OB post, USA Today points out science is pretty much a team sport and very few people make discoveries all by themselves in their garages anymore. Things are just too complicated and too expensive these days.

The idea of the dashing, undaunted, brilliant rogue doing his research alone at night (I just flashed on Dr. Frankenstein here; sorry.) is romantic but obsolete.

Testimonials are great at funerals and ‘roasts’ but anyone who has had to write a recommendation knows such things are easily slanted and misinterpreted. I am stopping short of accusing anyone of outright lies or psychotic delusions, but if all the treatment has to back it is testimonials? Put away the credit card and leave.

The problem – or one of the problems, I should say – with quacks is they go after the vulnerable. Sleazy sons of sea crooks. Are some of us desperate? Absolutely. We don’t want to believe medicine is not yet in a position to help us.

USA Today suggested one of the things I have been harping about now for months: sign up for a clinical trial. Even though ‘mine’ have been stalled for months and driving me insane, mainstream research is where the action – and the hope – is.

Minimally go for a second opinion before you commit to any treatment, but especially if it looks a little murky based on some of the red flags we have talked about. If your treatment provider tries to discourage you, he might be hiding something (like he’s a quack, for example!)

Thus endeth the lesson on “foul” identification😘

Be safe out there. Continue reading “Quack, Quack”

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I Promise

Greetings! Beautiful day. Sunny but cold. 37 degrees Fahrenheit. My friend who is ever concerned about my welfare knew my husband had pumped up my bike tires and thought today would be perfect for me to join her in a bike ride. Yes, I want to ride, but it is 37 degrees! Whoa.

New washer came bright and early this morning. I am actually very glad to be able to get some laundry done. Classic example of not appreciating something until it is no longer there.

Which brings me to our vision and a problem I heard about the other week. At least one member has retinal scarring. If one person has it, I suspect others do as well. I tried to look it up online and there was surprisingly little. Everything I found turned me around to macular puckers and holes. They are obviously all related, but what I was looking for was scarring in particular. If you find any good info, please share. Maybe write a page😀.

According to WiseGeek, retinal scarring is exactly that, scar tissue on and under the retina. Small scars are not that big a deal. Our wonderful brains just sort of erase them. However, big ones make problems by giving us visual distortions and loss.

What types of distortions? According to WiseGeek the Amsler Grid may curve and/or parts of it may pull out of position. Reading can be just about impossible for people with large retinal scars.

Cause of retinal scarring can be pretty much anything that causes the retina to become inflamed. That would include injury, illness and wet AMD. Repeated inflammation leads to the potential of bigger scars and more vision loss.  [Lin/Linda here: I found an article that says “People can develop retinal scarring from severe myopia, ocular histoplasmosis syndrome, and wet age-related macular degeneration (AMD). Scarring results from inflammation, caused by irritation of the retina. Severe occurrences  can cause swelling of the retina, wrinkling of the surface tissue, or even retinal detachment.” The article also talks about research into a compound that may prevent scarring in the first place.]

You hear the cautionary note there? For you folks with wet, very few things are more important than keeping up with your treatments and preventing irritation to your retinas.

Repeat after me: “I promise I will get my treatments in a timely fashion. So help me God.” Now spit in your hand and virtually shake….yuck. Who came up with that spit in your hand business? Obviously knew nothing about viruses and bacteria.

Treatments for retinal scarring appear to be limited at this time, of course. Because the available treatments are invasive, often the first ‘treatment’ is watch and wait. Other treatments are vitrectomy and something called a membrane peel.

We talked about vitrectomies in the past. In that procedure the gel like substance in your eye is drained. That substance, the vitreous, has string-like things in it that can adhere to the macula and tug. These ‘tugs’ create puckers, holes and scars.

Epiretinal membrane peeling is described in an article by Hampton Roy. The title is, aptly, Epiretinal Membrane Treatment Management. My interpretation is that in a peel, the surgeon teases off the upper layer of the retina. Maybe like trying to take off just one cell layer of an onion? Roy goes into explanations on a few different types of peels. My assumption is their assumption is the scar will be mostly in the top layer and can be removed this way.

So now you know everything I think I know about retinal scarring and its treatment. Remember, I am not a doctor and you should assume I know nothing when it comes to pretty much anything. The great majority of what I think I know has come off the web. Always check with your doctor. Continue reading “I Promise”

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I Have Macular Degeneration…Now What?

If you aren’t familiar with how to move around on our website pages, click here

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers.  Click here to go to Guide Me.

What other websites are helpful?

Here are some of our favorites:

  • Click here for a video that covers important information about AMD
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis (which is common)
  • Click here for some answers to common questions about depression after diagnosis
  • Click here for an article about how vision rehabilitation helps prevent long-term depression
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for an article about how fast AMD progresses
  • Click here for 10 questions to ask your doctor
  • Click here to find a support group
  • Click here to find out should I take the AREDS or AREDS2 supplements?
  • Click here read about the role of nutrition in AMD
  • Click here for eye healthy foods including a Healthy Vision Grocery List
  • Click here for a January 2017 scientific review article“Nutritional and Lifestyle Interventions for Age-Related Macular Degeneration: A Review”
  • Click here to find out what vision changes/symptoms to look for
  • Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)
  • Click here for tips on how to make the most of the vision you have
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’

Where can I do more research?

Of course you can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

  • through Sue’s Journal Pages. Sue became visually impaired early in 2016.  She is a psychologist trained in Dialectic Behavior Therapy (DBT), a cognitive behavioral therapy, and she writes about how she is using it to help her cope with this vision loss.
  • on our Resource page where there are links to many sources of information such as what is AMD, what is Stargardt’s Disease, organizations and websites with useful information, support groups, videos, books & reading materials, where to find vision services, where to find financial help especially for injections, personal stories, the science stuff, clinical trials & research (and how you can become part of one,  online newsletters, symptoms, possible causes/contributing factors, treatments, coping, how to take care of yourself…and more!
  • and in the posts in News/Highlights blog

There are more ways to get information from our website

Search or select CategoryYou can actually do research ON OUR WEBSITE!  You can find things such as in which of Sue’s journal pages does she talk about depression, where can I get more information about sunglasses or vitamins, etc.  If you are using a computer, for example a laptop, you may have seen the search box plus words under Categories and words under Tags/Keywords on the right side of each page. If you use a tablet or smartphone & the screen isn’t wide enough, unfortunately you have to go all the way down to the end of each page to see these sections.

Do you want to know in which pages Sue talks about depression? You can type the word depression (you can also type multiple words) in the search box or select the word depression under Tags/Keywords and you’ll get all of her pages where she talks about it plus you will get any of the News/Highlights posts as well as any matches in the Resources/Links or News/Highlights pages, too. If you want to find everything on our site about sunglasses, you could type the word into the search box or look for the word under Tags/Keywords and select it.

Tags/KeywordsIf you want a broader range of pages & posts such as ‘Tips for living with low vision’, you’ll see that under Categories.

 

 

 

 

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I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

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Linda & her dog Chase
Linda & her dog Chase

To find about more about me, about Sue, about our project, go to the menu at the top of the page for sections about each of those.

 

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Rick’s Story: Part 2

This is the Monday after my Thursday morning surgery.  I am taking eye drops 4 times a day: Prednisone and Ofloxacin.   I sleep with a shield to protect the right eye. I am in good spirits but I do feel the right eye, not in pain but just it feels like it has been worked on.  I wake up in the morning and have a bit of mucus build up in the right eye.  I will discuss that with the doctor when I see him on Friday.  I sense it is a natural outcome of the critical surgery. Not as much redness finally today.

I am not to work out such as lifting, running or walking fast.  I am not to bend over but I have forgotten several times and done this.  Trying to remember to bend with my knees.  I took a leisurely walk yesterday and today. On Saturday I went to an alumni 5K race and watched the event which required some light walking.  I feel stronger every day and would like to start walking fast but want to hold off until next Friday appointment.

My convalescence is made easy because I am temporarily laid off. I feel I would not have been able to work the first week after macular pucker surgery in all honesty.  I am having trouble remembering not to lift heavy things and bend as it is. I think anyone who gets retinal surgery should be prepared to take one or two weeks off of work just to be safe.

I have been able to spend time with my family and each day. I am driving more to get back in that groove. I felt weird driving around town on Saturday.  We drove to Kingston yesterday from Berwick (about 30 miles) and I felt better about that.   I am constantly wearing wrap around sunglasses as the sun at this time of year is very strong and I do not think it would be good to be unprotected.

The first several days I have been very tired and almost want to nap in the later afternoon but I am feeling stronger each day.  Perhaps the drops are making me tired but it could also be the degree of the surgery. Perhaps at 64 I am getting to be more prone to taking a nap in the afternoon.  I am catching up on my reading both in English and German; this helps make up for not being able to work hard or work out.

Thank you for allowing me to make this partial report on some of my post operation effects and feelings.

Continue reading “Rick’s Story: Part 2”

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