Category: Sue’s Musings

Now What?

There is a Zen saying I came upon: “Leap and the net will appear.” It, of course, speaks to faith, faith in yourself, faith in the Universe and faith in a Higher Power. I am leaping and I am scared to death.

Today is the last day of my school job. I woke up at 2 am in a panic. I have had this job since 1978! Even though I have been planning for “now what”, I still keep thinking “now what?”.

“Now what” is a momentous question. It contains a whole lot of stuff. The Buddha said (and no, this is not a Buddhist blog. I just keep coming upon Buddhist quotes and they resonate. If you have a Bible quote or a Quran quote that applies, please share). Anyway, to start again, the Buddha said suffering comes from holding on to what you can no longer have, to what you don’t have, to what you can never have. Some Westerner boiled it down to “happiness is wanting what you have.”

Okay, so letting go and moving on can reduce suffering to pain. I am trying hard to pull my fingers off from around holding on to what I no longer have. Think this is easy? Try it sometime……oh, wait. You have!

I suspect just about everyone who is reading this has macular degeneration. After all, that is what this site is supposed to be all about. (And yes, I recognize I go off on major tangents more than I truly should). I also suspect every one of you has asked the question “Now what?” Now what after a sight loss, now what after leaving a job, now what after losing a driver’s license.

The problem is, I can barely answer that question for myself. How in the name of all that is Holy can I expect to answer it for you? Nope. You are sort of on your own there.

What I can tell you is there is only suffering from holding on to what you don’t have. A very wise man said that several thousand years ago. Moving on is the way out of the pain.

So, we leap. We are not sure there is a net there. We trust there will be…or we weave one for ourselves on the way down.

We don’t have to be brave. We don’t have to deny the pain. Hell, I have been in tears half of the day. All we have to do is have the faith to jump. We will be saved.

Leap and the net will appear.

[Lin/Linda: I, too, am leaping.  After quite a few years of not being employed and at age 65, I leaped into a profession I knew nothing about, one where I will be held to high standards, one that I may not be able to continue due to my physical restrictions. Is there a net? I hope so!  We are all on this journey called life together!]

Written June 6th, 2018

Next: Patience…or Not

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The Waiting Game Continues

We’re off to see the Wizard! Not sure what this trip will accomplish except to tell me I am a bit blinder and to put me on the study referral list one more time. [Lin/Linda: Read about who the Wizard is in Sue’s page The Man Behind The Curtain: The Wizard of Wills.]

I heard from ‘my’ researcher at the beginning of the week. She said things were moving along and they were getting closer to launching the Astellas study. Not sure what that means. Does that mean six weeks? Six months? Six years? Also, while I interpret her responses as hopeful, she has yet to say I am in for sure. I chose to interpret everything she says as positive. [To read more about the Astrellas study, read Sue’s page The Waiting Game.]

“All that we are is a result of what we thought.” – The Buddha

Same day, afternoon

Well, we are back. Pretty much what I expected. A couple of new wrinkles. My disease is progressing at an average rate. The stem cell study should be ready to go sometime this fall. That will be about six months after the initial target date of March.

It appears people still have confidence in APL2. The slowing in the rate of lesion growth was promising, of course. The failure to slow vision loss along with that may be being seen by some as an experimental fluke. Apparently, they are expecting that will change when larger numbers are run.  [To read more about the APL2 study, read Sue’s page The Waiting Game.]

Oh, and Regillo is pulling back to full-time in his Philadelphia offices, or at least leaving the satellite office I have been using. I am being given to an assistant wizard. Crap.

I am discouraged but not defeated. We are getting closer to the discovery of some sort of treatment for dry AMD. It is going to happen and I might as well help…not to mention being one of the first ones to get some substantive help with this thing. Really, you did not actually think I was being selfless; did you??

In the meantime, trying not to fall victim to a crappy mood, I have done a little self-help. I engaged in some behavioral activation and some good old DBT opposite to emotion. In other words I got moving and did something that would make me smile. A little positive activity is often helpful to quell a developing sour mood. That is especially true when there is nothing you can do about the situation.

Dancing on the deck of the Titanic? Yep, but remember, 706 people survived that disaster. That is nearly a third. Oh, and two dogs. (The stuff you can find on the internet!)

I have a friend who believes if you are not having success, you are not trying hard enough. When I tell her I will stay the course because right now Wills is “the only game in town”, she says I have to look farther afield! [Lin/Linda: not me!]

Alright, so Wills is number 2 in the nation. Shall we look at number 3? Wilmer at Johns-Hopkins is only 154 miles. That is realistic if they have something wonderful.

Out of 116 trials in Baltimore listed, only one was even vaguely appropriate. They are doing trials with Zimura. And guess what. Those trials are happening in Philly, too.

Take home message.? This is FRUSTRATING. Take care of yourself. No sense adding insult to injury. Getting depressed will not help. When people suggest you are not trying tell them you are linked in to an active network (that’s us!) and you are working to solve your problem.

To paraphrase the armed services, those who wait also serve. And sometimes that is the hardest job of all.

Written May 30th, 2018

Next: Combination Therapies

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Please Be Cautious

Waiting to go and buy a new, cheap, power mower and then get dropped off at the Y. I have been trying to use my long weekend ‘wisely’.

Translated: I will be more tired when I start the work week than when I ended the last one.

Getting things done, though. Including blog pages?.

So, how are ya? Do you remember that debacle in Florida several months back? Three blind in Florida due to a bogus and botched stem cell procedure.

The FDA sort of moves in glacial time but it does move. In May the FDA filed for permanent injunctions against that stem cell ‘clinic’, US Stem Cell Clinic, and one other one, California Stem Cell Treatment Center.

US Stem Cell – I always get a little wary when anyone ‘wraps himself in the flag’ as it were. Truth, justice and the American way? – has said they will vigorously defend themselves and cited “the rights of a patient and physician to decide whether or not to use a patient’s own cells for a therapeutic purpose without government interference”.

While that sounds lofty and very ‘American way-ish’ I wonder about a few little things like informed consent and the Hippocratic Oath. How many of us can truly say we understand stem cells well enough to be ‘informed’? The farther away medicine gets from mustard plasters and chicken soup, the harder it is for the average guy on the street to be able to give informed consent. Basically, when the medicos start talking, it comes down to having faith in the guy who is talking at you. What if your trust is misplaced?

Bringing us to the Hippocratic Oath. “First do no harm.” Believe it or not, those words are not in the oath, but close enough. Then there are a few statements about honoring those who have come before (as well as others working in the field I assume) and being part of a society. Not to mention not being ashamed to say one does not know. Hmmmmm….

Were these people open to peer review? Were they working for the good of society and advancing knowledge like a standard clinical trial or were they working for themselves…at $5,000 a procedure?

If you don’t play by the rules, the ref takes you out of the game. Simple.

And while the FDA is nitpicky – and who would NOT want all of the lice eggs out of her hair?!?! – they are not heartless. This does not apply to us because AMD is not a fatal disease, but the FDA approves the great majority of compassionate use requests it receives from the terminally ill. In other words if you have a fatal disease and you believe an experimental drug or procedure will help to save you, ask and you will receive.

How often does that happen? According to Fox News (March 13, 2018) the FDA approves 99% of requests.

So once again, please be cautious. Yes, you have a right to make foolish choices, but please don’t. Don’t let someone get you all fired up about the government trampling on your rights with your treatments. I am not a fan of big government but someone has to vet this stuff and I have not heard of any better process than the clinical trials process. Have you?

But that is just my opinion..

[Lin/Linda: here’s a new report that came out after Sue wrote this page: Woman says experimental stem cell procedure for eye disease was “too good to be true”]

Written May 28th, 2018

Next: Hawaiian Eye

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Catch-Up Days

I have this long, holiday weekend earmarked for a lot of things. I have gotten a few done. The pool is open and semi blue. I have gotten some drown-proofing lessons for the puppygirls accomplished. While Etta has some form issues, Maggie swims like a dogfish. She attacks the water with gusto. Bonsai! Puppy flop! Splash!

Part of our obligation for our ‘free’ conference was to do our homework. This week I ‘read’ chapter 2 of the text with my free version of NaturalReader. Some of the pronunciations are way off but it keeps it entertaining. I did need to follow along in the book. If you need to read higher level text and cannot follow along visually, the free version may try your ‘pay tee aunts’.  [You can read Sue’s review of NaturalReader compared to KNFB Reader starting on her page Battle of the Apps: Part 2.]

NaturalReader does advertise a ‘professional’ version for $99. I just am not sure what profession! [If you want to read more about this app & do a search, you’ll find it as NaturalReader ‘all one word’ and Natural Reader ‘space between the words’. Usually, Natural Reader ‘space between the words’ refers to a text-to-speech reader for Windows 10. ]

Since I will be needing it in about a month, I filled in the forms for my Medicare supplemental program through the retirement system. I am still researching what to do about health insurance for my husband. The local hospital system wants $1100 a month for their ‘good’ plan. My retirement system would cover a spouse for $1000 a month. However, the lovely lady at the retirement system’s insurance office suggested COBRA. I could get 18 months of insurance for my husband for about $800 a month. Maybe enough time for some sort of miracle to occur in American health insurance? That would be nice.

COBRA will cover you if your insurance plan was through a company with 20 or more employees and if you were covered the day before the qualifying event – such as taking disability retirement because of vision loss or pretty much any other reason you lost your health care through an employer. Termination for “gross misconduct” is not included so if you want cheaper health insurance, behave yourself!

I was told my soon-to-be-former employer is obligated to send me information immediately upon my retirement. There can be no lapse in coverage so the few days it may take to get him signed up will be covered. The plan will be the one the school districts offers and we are supposed to be able to get it for 18 months.

Savings as compared to the hospital insurance plan? Approximately $5,400.

Just passing on that little bit of information. If you have the health insurance and have been worried about how your spouse will be covered, COBRA is not necessarily a great option but it may be better than the alternatives.

Also, check the Marketplace. If you make less than $64,900, there are discounts available there. Find an ‘insurance navigator’ to help.

Not exactly about age related macular degeneration but I would say health insurance is a problem that can keep us awake at night, especially when we need to leave a job unexpectedly. Hope this info will give you another avenue of inquiry.

That is it for now. I have an evaluation report to write. Let’s hear it for ‘catch-up’ days!

Written May 26th, 2018

Next: Please Be Cautious

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Shine a Light Under the Bed

Happy Memorial Day! Even though the summer solstice does not come for a few weeks yet, temperature-wise and culturally, it is summer! Hot time in the summertime! (Sly and the Family Stone, 1969).

We opened the pool yesterday. My husband wrenched his back in the process so the puppygirls and I are hanging at home together. No chauffeur. Such is life when you cannot drive any more.

The girls are ‘helping’ with pool maintenance. I am vacuuming and they are getting in my way. We need to get Etta water wings. I think we have the only Labrador Retriever in the world who is a bad swimmer!

Last time I reached in to fish her out, she clawed me all up. It would be nice if ‘maturity’ did not bring such thin skin!

So, moving right along, I hope you all saw Lin’s post about Dan Roberts yearly summary. I loved what Dan said about knowledge. Dan said, “Knowledge is the best way I know of to keep the fear of the unknown at bay, making living with low vision less stressful, and acceptance a little easier.” So glad that great minds think alike!? When you shine a light under the bed the monsters disappear.

Looking at what Dan has covered, I see we have some overlap, much stuff that is exclusively his. One thing he reviews is a very recently published research study that may ‘coax’ (my word) Muller glia cells into becoming photoreceptors without doing all the stem cell production stuff.

So, inquiring minds…sometimes bite off more than they can chew! Researchgate has an abstract about Muller Cells in the Healthy and Diseased Retina. The article says Muller cells ensheath all retina neurons and there is a “multitude of functional interactions” between Muller cells and retina neurons. In other words, they are work buddies and they are tight! It appears to my social scientist little mind that Muller cells help to maintain a good working environment for retinal neurons. (Please read and interpret yourself as the girl has been known to be wrong before!) There is some evidence they have a role in angiogenesis. That is you, you wet folks. Angiogenesis is the creation of new blood vessels.

Now all is not perfect with this bromance. The abstract also says “virtually every disease of the retina is associated with a reactive Muller cell gliosis”. According to Wikipedia gliosis is a nonspecific reactive change of glial cells to damage to the central nervous system. The rest of the explanation is a lot of sciencey stuff that made my eyes cross but it sort of sounded like damage to you causes damage to me and then I return the favor. Oh, and the macrophages get into the act, too. Social scientist here…would you like to talk learning theories? I am pretty good at that. ? This, not so much.

Bottom line here is our Muller glia cells and retina neurons really need one another. They share a lot and it may be possible to ‘retrain’ a Muller glia cell to do the job of a retinal neurons and actually even ‘become’ a retinal neuron. Very cool.

And now back to zen and the art of pool maintenance…with apologies to Edward Abbey. Have a good weekend!?

Written May 26th, 2018

Next: Catch-Up Days

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Life’s Transitions

I had to get transportation home from school today. Although home and school are less than ten miles apart, it took me an hour and a half to get home. One of the riders lives in the hinterlands, God’s country, call it what you will. The bottom line was this: we went baja-ing in the short bus. [Lin/Linda: I had to look up ‘baja-ing’ – also spelled ‘baha-ing’ – in the Urban Dictionary.  It means “To cruise around on a motocross bike, four-wheeler, big pickup truck, jet ski, speed boat or some other vehicle where you may experience excitement by jumping dirt mounds, waves, or some other form of obstacle.” I’ll email them to add ‘short bus’! ::grin::]

Good thing rural Pennsylvania is pretty country. The roads were not. Potholes, ruts and mud. Also kids riding horses, as well as deer, dogs and goats – yes, goats! – all in the road. The goats were hanging out near a house with a sign, “not my goats”. The resident may have put up the sign in self-defense, but the humor was delicious. Especially since we had already been riding for an hour!

I needed that humor. It punctuated the ‘fact’ my life can be a comedy of the absurd and sometimes the only thing to do is to sit back and enjoy it. When baja-ing in the short bus, be sure to notice the goats!

I needed the humor because I am embroiled in a big life transition right now. Retiring from school and approaching 65 have got me reeling. Pick a retirement plan. Pick a Medicare plan. Find health insurance for my husband. HOW much?!?!? Find cheaper health insurance for my husband. Check what will happen to my state certifications. Good grief.

Then there is the stuff at the counseling center. Launching a BIG project there. That ‘free’ training we got the other week is going to be paid for with sweat and aggravation.

How to handle transitions. Carefully, very carefully; right? Psychology Today had a piece about ten ways to handle life’s transitions. That piece talks about moving as an important transition but I should think leaving a job, sight loss, that sort of thing would be just as important. I would suspect the “ten ways” would apply in some ways. Ya think?

Anyway, Psych Today suggests we give the devil his due. Transitions are important and they need to be acknowledged, not shoved away and never thought about. Painful or not, these times define our lives.

Then there is the question of attitude. Threat or challenge? Good or bad? I have yet to be jumping up and down with joy about retirement or sight loss, but I have tried to find meaning in them. Remember Viktor Frankl said, to paraphrase, sometimes the dignity with which you handle your challenges gives the pain of those challenges meaning. Focus on the positives whatever they might be.

Then of course, there are supports. Turn to your friends. Turn to yourself! We haven’t all gotten this far without some successes. That successful person is still in there and ready to help. Take confidence from all she accomplished. You can do it!

That brings us to role models. If you cannot be a role model for yourself, find someone to show you the way. There are people who have walked your path before you. They got through it and so can you.

Written May 23rd, 2018

Next: Shine a Light Under the Bed

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How Can We Lose?

Hi! Hard to believe May is half over. One of these days I am going to wake up and be 90.

One of the 30ish girls in yoga declared she wants to live to be 110. Some of the slightly older folks said they wanted to live as long as they have quality of life.

What is quality of life? What is a life worth living (to put it in DBT speak)? That is something everyone has to answer for himself. However, whatever it is, we would like to think we are encouraging you to pursue it, vision loss or no.

I still don’t ‘get’ some of the reactions to my retiring from my school job. I was talking to my yogini about it the other day. She said what I say: I have been living my life for the past 64 years. (She has been living hers for 39). Why think I need to squeeze all of my ‘living’ into whatever time I have before my vision becomes even more of an impediment?

Maybe I have just been blessed what I have done for a living has contributed to my ‘living’. If you are/were not one of those people? Carpe diem, my dears. Carpe diem! Seize the day and get some living in!

Really not much happening here. I got two nights of lodging approved for the summer academy. That is the only way it will work since I will need to ride the bus down and back. Not liking that one but I am not being willful about it. Rejecting a slightly unpleasant solution – especially one that is the only solution! – is cutting off your nose to spite your face. [Lin/Linda: The summer academy that Sue refers to is the Penn State Summer Academy which is a program at the university that prepares high school students with visual impairment for college.  You can read more about it starting with Sue’s page from last year I’m a Big Kid Now.]

But enough about me. Let’s talk about me! ?…no, not really. Let’s talk about the AMD information. VisionAware did an article in which they featured comments by Denis Jusufbegovic out at Indiana University. Dr. J. did a really nice job of outlining the clinical trial process and warning people – once again – to not get taken in on bogus trials. Remember, in the legit ones, they pay you, not the other way around. He also reminded us that these are experiments, not certainties. Don’t get taken in by people who promise you the world. Desperation is one thing. Vulnerability is another.

To end the article Jusufbegovic cited the research on CPBE-RPE 1. He gave that as an example of extremely promising developments.

What is CP…whatever? It is that experiment we talked about (webpage: The Patch) in which they used an extremely thin piece of Parylene to support a monolayer of stem cells for placement. The Parylene replaces the damaged Bruch’s membrane. Looking very promising.

The researchers for CPBE-RPE 1 are Humayun and Hinton. No only did they get $38 million to continue their research, Humayun was the 2015 winner of the National Medal of Technology and Innovation. This is the nation’s highest award for achievement in technology.

Humayun is no slouch. This Pakistani immigrant is the only ophthalmologist to be elected to both the National Academy of Medicine AND the National Academy of Engineering.

The best thing about Humayun? He is putting that brain power towards solving our problems! Can’t beat that with a stick. With people like Humayun in our corner, how can we lose?

Written May 20th, 2018

Next: Life’s Transitions

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Old Age and Treachery

Hello! I have now been home from State College for two days. Yesterday was a recovery day. It is amazing how exhausting it can be to sit in a room and take notes 6.5 hours a day for five days. My brain was tired! [Lin/Linda: I never realized how many names there were for what I think of as Penn State…State College is the city where Penn State is located.]

Of course, you have to factor in the many joys of visual impairment. I lugged my CCTV back and forth between the sessions and the hotel room. Used my MaxTV glasses to try to read the PowerPoint slides and struggled to find where we were in the binder of materials. Yes, it can be done and no, it is not as easy as it was when I was not a VIP.

Being an oldster with lots of experience and education did have its advantages, though. I was able to participate in discussions. I answered more questions right than I got wrong. I think I held my own with all those young ‘whippersnappers’!

Old age and treachery will always beat youth and exuberance. – David Mamet

Back in familiar surroundings. Sleeping in my bed and eating more typical (for me) food and I am starting to feel more like ‘me’, whatever that might be. I did not exercise at all in State College and I am trying to get back into that routine as well. I did easy Zumba and yoga yesterday but got a little more committed in yoga today.

You may have noticed, as you get older things go to Hades in a handbasket. Everything – not just our eyes – seems to fall apart. If you don’t believe me, I can show you the allergic shiners I seem to have developed along with a late-in-life case of ‘spring fever’ aka pollen allergies.

One of the other things that goes straight to Hades is athletic conditioning. According to the Berkeley Wellness site, the exercise detraining effect even two weeks of detraining can lead to losses in cardio fitness. Not exercising for two to eight months can lead to the loss of all fitness gains.

Those numbers are for younger folks. In 2009 the Journal of Gerontology reported it took three months for a group of women over 65 to lose the gains they had made over 8 months. Uh oh.

So I am back to the gym. Even thinking about adding a little weight training. Why? According to Darryn Willoughby at Baylor, weight training affords us better control of symptoms of chronic conditions such as diabetes. It improves balance and posture as well as stability. Flexibility, and range of motion are improved; not to mention strength and endurance. Leading to…drum roll please…a healthy, independent and functional life! Exactly what vision loss threatens to take away from us.

Can’t get to the gym or cannot afford weights? Check first with your doctor and then try this: food, drink and other household products. A good thing to start with is a soup can. If you are ambition you can work your way up to a gallon of water, 8.34 pounds. There are all sorts of workouts online. One might be for you.

So, there you have it. One more fitness lecture coming at ya. I am not giving up yet!

Written May 13th, 2018

Next: How Can We Lose?

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I Need a Sherpa

Happy Cinco de Mayo! Also Kentucky Derby Day! Things happening all over the place.

I got to the bagel shop for a chicken salad bagel sandwich today. That sort of thing is big news when you don’t drive any more. No unplanned stops when you ride transportation. I had been thinking about chicken salad on a bagel for a couple of months. Sad but true. Interested enough to keep thinking about it, but not interested enough to plan a special trip.

Sometimes it is the little things that drive home the impact of visual impairment.

But I got there and I am getting to the conference too. That is tomorrow. Trying to figure out what to pack. I am thinking I am going to need a Sherpa. I have my CCTV, plus MaxTV glasses, plus handheld reader, plus my binders from DBT class. I have to take clothes for five days. One colleague asked if I were taking workout clothes. Maybe we could find a yoga studio…that doesn’t mean I need to take my mat, does it? Another colleague asked if I were taking a bathing suit. Oy vey. Like I said, I think I need a Sherpa! I was bad enough before my vision impairment; now I am hopeless.

Oh well, we plod along.

And in other news, I see Medscape revisited the concept of combo therapies for wet AMD. In their May 4, 2018 post they reported Regeneron had tried to boost the effectiveness of Eylea with an antibody, rinucumab. It did not work but they will keep trying new things. Not to be too cynical about this, but at least part of the reason is Regeneron’s earnings are not growing as fast as they were. Lack of profits, like necessity, can be the mother of invention.

Regeneron had paired with Bayer on rinucumab. Bayer usually comes out on top somehow. Historical note: Bayer’s parent company used slave labor during the Holocaust. It also had significant holdings in the company that made the poison gas for the gas chambers. They did apologize. In 1995. I believe that was at least several years after my parents gave me Bayer baby aspirin. ? Go figure. Like I said, though, Bayer generally comes out on top, so it is probably a good company to have in our corner.

But I digress, again, still, whatever. I assume most of you have lively minds and find some interest in these little diversions.

Regeneron has tried several other compounds paired with Eylea already. None have been very successful but I doubt they are done trying. One of these attempts is going to find something that will significantly improve the efficacy of Eylea and thus improve the lives of you wet folks.

Just keep the faith. Amazing things are happening all over the place.

Written May 5th 2018

Next: Audio Holodeck?

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That Little Summer Dress

I bought a little, summer dress the other week. It has paisleys on it. Paisleys!  Everything old is new again. I don’t believe I have worn paisley since high school. Remember the Beatles Summer of Love (1967)? [Lin/Linda: Long live Beatlemania!]

Anyway, that is just a bit of nostalgia to help us feel more positive.  In truth, I am writing about the dress because it – and what I have on with it – represent a bit of, well, defiance on my part.

Now I have you curious.? I will let you mull a second before I tell you.  Nothing bad. Capri leggings and sneaker ‘slides’, no backs on the shoes. Bright red. Definitely not a little, old lady outfit.

I have been having some problems with the people putting on this week-long seminar. They have been reasonably OK with my being visually impaired. (Like they have a choice? I am not above screaming ADA.) The problem is they arranged for continuing education credit for social workers but not for psychologists! They are now scrambling to try to rectify that little oversight and I am wondering if it is still worth my going!

I got very judgmental about this oversight. Just because psychologists will be in the minority, just because we are different, we should not be ignored!  What rude event managers!

Then I felt bad about being judgmental and thought about conforming as much as I could and keeping my mouth shut.  We different people can be such bothers!

Then I started thinking how I have a right to be different, to be me. Next thing you know I have on my paisley dress, leggings and red shoes and I am off to work! So I am different. Deal.

And the DBT skill that is? Opposite action to urge. I had the urge to just slink away but, since I had done nothing wrong and there was no reason for me to feel I was wrong by being different, I did the opposite to the urge and presented myself as even more different!  My action was opposite to my ‘wrong’ urge.

Thinking about the above situation made me wonder how many of you feel guilty about being ‘different’, about being such ‘bothers’ to the rest of the world. Who just tries to muddle along without any special consideration because you don’t want to put people out?

Goodtherapy.org did a 2013 article on shame and the disabled. Shame is different from guilt. Guilt is feeling bad for what you did. Shame is feeling bad for being who you are. Goodtherapy reported people can limit themselves severely because of the shame they feel about having a disability.

In a 2010 posting on intentblog.com RainMacs the blogger, talked about snarky comments and feeling paranoid about being “found out”. This was  even though she was not faking!

Most of the posting I found were blogs with very few of them being research. Sort of surprising I did not find a lot of research because nearly all of the blogs mentioned guilt and shame as emotions of those with sight loss. No one seemed to pick up on that as a research topic.

So to recap:  I am different. Sometimes I feel guilty about that. Sometimes this square peg would really like to fit into a round hole. Sometimes it would be nice not to have to ‘inconvenience’ people.

Then I stop and ask two questions: did I do anything wrong? Is there something inherently ‘wrong’ about me? If I can answer “no” to both of those questions, I put on a cute, paisley dress with leggings and bright red sneakers.  And that difference about me? I flaunt it.  It is alright to be me, flaws and all.

This little light…let it shine, let it shine, let it shine.

Written May 4th, 2018

Next: I Need a Sherpa

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News from Research

Hey, hey, how y’all doing? I did my Zumba class and half a yoga class and then walked up to the street fair to help with the Y’s demonstration class. Had a hamburger and fresh cut fries as well as an ice cream. I did mention I have a horrible diet; right? Then I waited nearly an hour for transportation. Geez.

If I did not have to walk along a busy road, I would consider walking the three or four miles it is to get home. I probably would get home faster.

Sometimes I actually consider just staying home because of the hassles with the damnable transportation. Then common sense grabs me – or I revert to my old, ornery self – and decide they are not going to break me!

Oh, forgot to mention, I begged, finagled, whatever a ride to Mom Prom tonight. I bought a ‘new’ prom gown at Sal Val. It was $7.50. Also silver high heels. $4.00. Very thrift store chic here! [Lin/Linda: if you are just joining us, the Mom Prom is a party for females over 21.  You buy a gown at the Salvation Army (Sal Val) thrift store.  And you don’t have to be a mom.]

Okay, enough of me. Let’s actually do some eye news.

One of those Healio articles from November, 2017, indicated they are now combining therapies for diabetic macular edema. They dosed people with Lucentis and then shot them with a focal laser. While they did not find any significant difference in the number of treatment required between the dose plus laser and the treat and extend groups or even differences in the visual acuity numbers of the groups, all treatments tried were effective.

So, in essence, they have started to ‘play around’ with treatments and may just find some combo treatments that give better results than singular ones. Personally, I am on two blood pressure medications. Either of them alone did not do a thing for me but together I have good control. There may be some people who will respond beautifully to the one, two punch of an anti-VEGF and laser combo just like I respond to my two, blood pressure medications. You never know.

Also in Healio last November – I did mention I got a bit behind; yes? – they reviewed trials of another anti-VEGF treatment. You wet people sure are popular with the researchers!

This new one is called brolucizumab and it is a “single chain antibody fragment VEGF inhibitor”. They were dosing every 12 weeks and the results were comparable to those obtained with Eylea. Also, side effects were less. In short, one more option for keeping your bleeds at bay. Pretty good.

And one more thing before I go, also back in November Healio ran a follow-up on a concept they reviewed in 2016. It appears about 100 people are now running around with macular hole repairs using transplanted autologous retina tissue. Cool.

Autologous means they get the tissue from the same person they are transplanting the tissue into. The tissue to be transplanted is taken from the superior peripheral retina.

Now, will the vision be as sharp? What are they doing to ensure the transplanted retina connects with the neural network? No clue. What I do know is they have started talking about using this technique to treat macular degeneration.

All told, ophthalmological research is speeding along on a number of different trajectories. Things are happening everyday and it really is the best time in history to be going blind! Hang in there.

Written April 27th, 2018

Next: From the Inbox

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Busy, Busy, Busy – Again!

TGIF! Another week is history. If time flies when you are having a good time, my life is apparently a laugh a minute!

According to a couple of articles I looked at, time flies when we are busy because we are focused and mindful of what we are doing. Time drags when we are focused on things that remind us of the passage of time. That would be something like watching the clock or focusing on your empty stomach while waiting for lunch.

fSo it appears being busy keeps our lives from dragging along, but does it do anything else positive? Turns out there are actually busyness benefits for us older sorts…good thing or I would be in large trouble!

Two years ago Frontiers in Aging ran an article entitled The Busier the Better: Greater Busyness is Associated with Better Cognition. When they looked at 330 people between the ages of 50 and 89 they discovered busyness was correlated with better processing speed, working memory, episodic memory, reasoning and crystallized knowledge.

Now since the study was correlational in nature, there was the chicken and the egg problem. Which came first? Are brighter people just busier or does busyness keep you sharper? However, the findings were consistent with the findings of the engagement research. To wit, if you are more frequently active and engaged in life, you are sharper. There is a myriad of studies that relate engagement in cognitive, social, and physical activities to better thinking skills.

Now, the Forbes article that took off from this study did make a couple of interesting points. The Forbes authors suggested older folks may have a healthier type of busyness than younger folks do. The Forbes folks suggested older people have more face-to-face social contact and engage in more physical activities. They also point out one of the key components of everything mentioned as good busyness was learning.

So how does this relate to age-related macular degeneration? Oh, it probably doesn’t. At least not much. I went off on another tangent. I found it interesting and I thought some of you might too. Maybe a reminder we are all not just failing vision and degenerating retinas. We have brains, too, and it is important to keep them healthy.

But if you really want to relate it to macular degeneration, well, come along and learn with us. Master new ways of doing old things…as well as some new things. Get out there and be an example of an involved VIP. Who knows? This visually impaired nonsense just may help you stay sharp!

Written April 27th, 2018

Next: Chocolate!

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Send Money

I like to think I get some of this crazy stuff as part of mass mailings and not because someone thinks I am dense, but you never know…

Last week I got a variation on the Nigerian prince letter. You know: “I am a Nigerian prince trying to smuggle millions out of the country. Send me your bank account number and I will wire the funds to you for safety.”  I have gotten that one multiple times.

Last week I got one from ‘The Bank of Canada’ mailed in a Walmart envelope and saying my husband’s grandfather left us $9 million. Send money for processing. Apparently ‘The Bank of Canada’ cannot afford its own stationery!

Then today in my email was an ad with the headline “Your Eye Doctor is Lying to You!” Good grief. How do these people find me?

Just like ‘The Bank of Canada’ using Walmart stationery puts up red flags for me, trash talk advertising does the same. If your product is so great, why do you have to smear someone else?

Then this same email advertisement plays the Higher Power card. The diet they are selling is Bible-based. Eat like the saints and the prophets and apparently our vision problems will be healed.

Playing on the faith of desperate people strikes me as being pretty low. Last time I looked – and I am not a Bible scholar – poverty and charity are biggies in Christianity. Why not just give this diet away?

Again, not a Bible scholar, but the only ‘diet’ I know of that is ‘God approved’ is eating kosher. Check in the Torah for that. Access to those guidelines is free.

So, what is the kvetching about? One, I like to complain. Two, I want to warn you once again to be careful. Immoral, shiftless folks are out there and they are trawling for…us. At least a few of them believe losing sight makes you desperate and stupid. They believe we will try anything. Offer us imaginary money, undermine our faith in our doctors and invoke the name of the Lord just for good measure. That will get them!

If you see an advertisement or are approached about a miracle cure it usually is neither a miracle nor a cure. We are not a consumer protection agency but if you come across something like that, Lin, I or one of Lin’s Facebook people often know something about it already or can find out without a lot of effort. Throw it out to us. Or, actually trust your medical people (and be sure you have medical people you do trust).

Most of us have had a long time to amass some knowledge and common sense. Some people actually would call us wise. (Really?!? Wow.) Don’t let desperation about our vision take that away. If you even suspect a rat, there is probably one close by.

Bringing me to my last quick caveat. We push research and clinicaltrials.gov. After that fiasco in Florida in which three women lost their sight, it came out that clinical trials.gov does not vet the research they list. There are now big disclaimers on their pages. If you are looking there look for big name sponsors and big name research centers. John Smith Labs in Podunk does not make it.

And on that note, I am out of here. Don’t trust any Nigerian princes!

Next: Busy, Busy, Busy – Again!

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I Got This

I don’t want to say this too loudly – one should never tempt the Fates. You know they have a perverse sense of humor – but things are getting accomplished around here. I just nibble, nibble nibble. “Whoops! There goes another rubber tree!” (High Hopes starring Bing Crosby, 1959). Nibble nibble seems to eventually get the job done.

Because I absolutely ALWAYS overextend myself (a high school speech took off from Robert Browning’s “…a man’s reach should exceed his grasp or what is a heaven for?”), I have always nibble nibbled at a half dozen things at any one time. There is very little that did not get done by the deadline.

Bringing me to the topic for today: getting through when there are changes in life and things get a little overwhelming. Trust me. I don’t want to leave my school job and I REALLY don’t want to deal with all of the happy horse manure changes that come to life with vision loss. But when I look back, the last 64 years have been navigated pretty well. I have a track record of successes. I have done it before. Hey, I got this one, too.

I had a client today who graduated college in May of last year. Doing the ‘adult thing’ and it’s stressful for him. My client is very nostalgic for his college days.

From our perspective it seems a little silly to be nostalgic at the ripe old age of 22, but actually nostalgia is a good coping skill at any age. Personal nostalgia, according to Kristine Batcho in the June, 2017 theconversation.com, can be a stabilizing force. It reminds us we have a great storehouse of personal memories. These memories of the good times and positive relationships can be comforting in stressful times. Batcho reports she has found people who are able to be more nostalgic – remembering the good times – can use the power of those memories to cope with adversity. Remembering the positive relationships in your life may make you more apt to reach out for emotional support, advice and practical help.

In short, I have been cared for. I have been successful. This is just one more hurdle like every other hurdle I have surmounted. I got this.

Since recalling good memories is good for you, you would think I could find a ‘how to’ list on how to bring up these memories. I did not and I really did look and look and look. One thing the sources agreed on was bad memories fade and good ones endure so that should make it easier. One Wikipedia article said some researchers stimulate recall by using lists of cue words. You can make a list of words like fun, happy, success, sunshine and see what comes up. Another Wikipedia article said when it comes to recall, faces have an advantage so take out that yearbook and take a look. Then there are smells. They are closely linked to emotions and memory. What does that baking bread remind you of? The French fries cooking at the street fair? The cologne that woman is wearing? Cue up some positive memories for yourself.

Just one more little trick to try to make things go a little easier. Hope it helped. And remember, “I got this”.

Next: Plump Up That Pigment

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The Power of Expectations

I like people. I really do, but every once in a while they drive me insane. (Then I drive other people insane complaining, but that is a different page!)

The most recent thing is this retirement nonsense. When people hear I have decided to leave my school job, they conjure up their own retirement fantasies. Then they project them on me!

Now I know projections are more about the project-er than the project-ee  but their expectations of what I would do in retirement gripe my cute, little ol’ lady tushie. Do they really know that little about me?!?!

Then I started thinking about expectations. Everyone has expectations of everyone else. Some of these people ask if I am going to do ‘fun’ hobbies, like gardening. (The last time I played in the dirt was the Dirty Girls charity mud run about 8 years ago!) Others expect me to sit in my favorite chair and watch daytime TV. None of the stuff they expect I will do is ‘me’.

The problem with expectations is this: they have an effect on the person at whom they are aimed!  It has been proven scientifically a couple of dozen times. Many years ago Robert Rosenthal randomly picked elementary school children and told their teachers they were the children a test had predicted would flourish that school year. One guess who just blossomed that year.  That was the power of expectations from others.

Then there is the power of our own expectations. Ever hear of the placebo effect? Yep, that is the power of our own expectations at work.

Now so far I have mentioned positive effects of expectations. Expectations also work the other way. In the winter 2018 Education Next they concluded racial bias negatively effects student outcomes.

Now what about expectations of the visually impaired? I suspect every one of you has dealt with the expectations of others. Some people – probably few and far between the truth be known – expect you to function as well as always. Others put severe limits on you. How could she possibly do anything? She is visually impaired!

Last year Kristen Smedley wrote for The Mighty about having to revise her expectations for her two, blind sons. She went from having dismal expectations to realizing the only way her sons were going to achieve anything at all was for her to believe in them and expect the best they could give. It payed off.

So, what is my purpose here? Well, other than to rant about how people expect some pretty strange things from me in the years after my retirement from school, I imagine my purpose is to warn you about the power of expectations. Don’t sell yourself short. Don’t let other people sell you short.  Low expectations lead to low achievement of goals. And in our class, low achievement of goals means a lack of independence.

Believe in yourself. Get others to believe in you. Harness the power of expectations.

Next: coming soon!

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No Respect

Anybody remember Rodney Dangerfield?   His catchphrase was “I get no respect”.

Although I have at times thought that dry AMD was being treated as the proverbial red-headed stepchild, I have always tried to talk myself out of that attitude. The people with wet have real problems. They are one bleed away from blindness. It makes sense they would work for a cure for them first.

However, I finally found someone who at least in part shares my concern. Philip Rosenfeld  down at Bascom-Palmer feels the same way. He doesn’t think dry AMD gets any respect either!

Rosenfeld talked about how all of the clinical research seems to have been focused on wet AMD. However, the truth of the matter is good responders to Anti-VEGF and dry AMD folks alike just keep getting blinder. Rosenfeld remarked how atrophy after ‘eye shots’ and dry AMD has become the most common causes of vision loss from AMD.

Rosenfeld – bless him! – goes on to say the effects of dry AMD are  ‘underappreciated’. Go, Philip! You tell ’em, buddy!

The functional vision loss associated with macular atrophy can be devastating. Okay, so we don’t have these dramatic crises like the wet people but that doesn’t mean we are not suffering. Dry AMD folks have feelings, too.

In addition Rosenfeld goes on to say the proof that dry AMD – and I quote – “never got the respect it deserved” can be found in the International Classification of Disease codes. Dry AMD was seen as so unimportant that there were  no subclassifications.  That is sort of like saying cancer without assigning a type or a stage.  Does the patient have stage 1 skin cancer and we remove the offending spot in the dermatology office or is it stage 4 bone cancer?  Doesn’t matter. It is just cancer.

Once again Rosenfeld notes the societal impact slowing macular atrophy will have. He remarked that vision loss has real impact on quality of life and it is much more than reading letters on an eye chart.

For example, I could not read the forms given to me at the veterinarian’s yesterday. I asked for help. (In case you did not notice, I am trying to be a good role model here. Do ask for help!) Multiple the three minutes the clerk took to help me by 1,000. How about 10,000? That is 500 man hours the people who are helping us could be doing other things!  Good grief.

Rosenfeld then went on to talk about how it has finally dawned on some researchers that we really may be having – and causing – some real problems.  Enter the studies they are now trying to slow the progress of dry AMD.

Lampalizumab looked promising but died in the stretch. Horse racing idiom there.

APL2 is getting a lot of hype. Just the same, there are concerns. As we saw, some people who saw the PowerPoint presentation on the drug  decided “this horse is lame”. (Coming from my heritage, I prefer “that dog don’t hunt” but the idea is the same and I really did not want to mix my references ?) [Sue wrote about this in her page Another $64,000 Question.]

Rosenfeld opined that failure of APL2 to produce any substantive functional vision differences may lead to the question of when to intervene with dry AMD. Rosenfeld seemed to suggest early intervention may be better than late.

Me? I am with Rosenfeld. We know where this stuff leads. There is no question of the potential endpoint. I say nip it in the bud! Treat early!

But who am I? Just somebody with a disease that gets no respect.

Written April 1st, 2018 Continue reading “No Respect”

DIY CCTV

Morning! Happy Saturday. I guess the day between Good Friday and Easter is nothing special; right?  [Lin/Linda: some people call it Holy Saturday or Easter Eve.]

I am practicing acceptance today. We had the puppygirls spayed yesterday and they really aren’t supposed to climb stairs. My husband took that to heart and tried to carry the 47 lb. Maggie Monster up the steps. On ruptured L4 and L5 lumbar discs that was. Consequently he is flat on his back in bed and I am at home all day. No ride.

Also practicing my comparison skill. Is being stuck at home but still able to motor around better than being in bed with back pain? I would say so.

Of course, I may just refrain from telling him Maggie has been following me while I do chores all morning. She has climbed up and down stairs on her own about a dozen times so far today!

I went for lunch with coworkers yesterday. We had to cross the road to get there. Did I get busted on or did I get busted on?!?! I had offers to be led by the hand and everything else you can think of!

Thought on that? I am really glad people are comfortable with my visual impairment. Being teased by friends essentially means they have accepted the situation, too. And guess what? It is okay.

And speaking of friends, Lin has been sending me ‘stuff’. The last one she sent me was Sam of The Blind Life (why do I remember that as called The Blind Spot? Delusional again!) reviewing the Modular Hose system. [He did call his YouTube channel The Blind Spot until someone told him they had that name first, now it’s The Blind Life.  Not delusional about this. ::grin::]

Apparently Sam has been trying to find a way to turn his iPad into a CCTV. Sam used a Lego container and a bag of beans for his do-it-yourself CCTV. Obviously he has not seen our page on the Justand!

Anyway, Sam is impressed with the Modular Hose because of its versatility. I have to admit, the Modular Hose did get into a lot of shapes and positions that the Justand, a rigid system, cannot.

The site is ModularHose.com. The page looks as if their product is used for industry but if you go down a bit, there is a link to assistive technology.

When you use that link you will see wheelchairs with the Modular Hose system attached. It appears they offer a large variety of option for the severely physically disabled, including things like head switches.

We probably would want the tablets and devices section. The cheapest set up I saw was $48. The one Sam was using looked to be $83 although when I went to the kits section I did find something similar for the price Sam quoted, $70. Since this thing is modular, you might be able to construct something that works for you from the stuff sold in the parts and supplies and arms sections. Arms are sold in segments and you might be able to save some money by scrimping on arm length.

So, in conclusion, I have never used this thing and I make no recommendations as a result. However, Sam was impressed by it’s functionality and versatility. It looks as if you could cobble together something that would work for less cash than the Justand V2 which I found advertised for $99. It also looks like it weighs less which is important if you have to haul it around.

That is what I have. Who wants to buy a Modular Hose system and report back? We are taking volunteers!

Written March 31st, 2018 Continue reading “DIY CCTV”

Bedlam

Greetings from bedlam. If you are interested in the etymology of words you probably already know bedlam is a bastardization of Bethlehem as in St. Mary of Bethlehem in London. ‘Bedlam’ in the Middle Ages was where they housed the insane of the city.

Who said we are not educational here? To steal a motto from a huge assessment and publishing house: Always learning.

Bedlam is appropriate here because, well, for one thing, I am still crazy. Tomorrow we have to take the puppygirls to be spayed. Responsible pet parenthood is important.

Then over the weekend I have to apply for Medicare. Moving along swimming through all the red tape and nonsense that seems to be involved in dealing with the federal government.

I still have reports to write and webinar hours to listen to on top of client contact hours, exercise and puppy parenthood among other things. That means some less urgent things are going by the wayside. Like writing a web page for instance.

Thankfully Lin has been doing a lot of legwork for me. She has been sending me all sorts of interesting things.

First of all, back to Londontown. Lin sent me a link to a radio program called In Touch. I had never heard of it, but I am just a dumb Yank, so what do I know? Anyway, it seems like a great resource. It is produced by the visually impaired for the visually impaired on topics of interest to the visually impaired. Cool.

The segment I got was about, first of all, the death of their first producer, a woman by the name of Thena Heshel. Listening to some speeches she had made about the early years had me shaking my head. Heshel commented about how people were only supposed to get information from vision professionals and the professionals were telling them nothing! When she, a layperson, started sharing information, she was chastised by the powers that be!

While we have not gotten a good tongue-lashing (yet), I could identify with the no info part. It drives me crazy when people feel they have the right to withhold or to parcel out knowledge as if it were their own private property.

Knowledge only gains real value when it is given away.

So, in other words, if you are ever playing a trivia game and the question is about the etymology of bedlam, you now know the answer! Giving the information to you helped to give it value because you could use it. Same with knowledge of our eye disease. Please use it and pass it along. Sharing knowledge can only increase its value.

And jumping down from my soapbox ?, I want to say I was relieved to listen to the rest of the In Touch segment Lin sent. The rest of the segment dealt with Professor Pete Coffey and his recently published study. They spoke of the sensational way the study had been publicized and the problems associated with that.

Professor Coffey also spoke about the research being extremely promising especially for wet AMD patients who have not responded to Anti-VEGF shots and who have been gotten to quickly. He made the point the therapy is not currently available. Several more clinical trial phases must be navigated before it is available to the public.

Thank, goodness! Balanced reporting. In Touch, it was good to meet you!

Written March 30th, 2018 Continue reading “Bedlam”

Children Cannot See!

First of all I have a confession: I am cranky. Thursday, transportation left me stranded. Thank God for compassionate souls with cars. Yesterday,  I had a full schedule of clients and lunch was at 4 pm. Hungry! I have a 12-hour – count them, 12! – webinar to listen to and about six reports to write. I have gotten ridiculously behind and my days don’t have enough hours.

Now, I understand I generally do this to myself. I also understand I generally am able to pull my own proverbial fat out of the fire so most people don’t worry about (or even listen to!) me. [Sorry, did you say something Sue? ::grin::] But – and that is a big but – I feel like whining and Lin showed me something to whine about!

To wit: “Breakthrough treatment may cure 50% of all cases of blindness”! What the rinky dink is that all about? It turns out the article is all about the stem cell work just published. Huh?

Okay. Age-Related Macular Degeneration is our nemesis but on the radar of the world in general, it is pretty much a blip! One blip. A little blip at that.

VisionAware reminds us that 90% of all of the 39 million folks who are blind actually live in the low-income countries of the world. Looking at our demographics, for the most part, honey, that ain’t us. Yes, AMD is the leading cause of blindness in the developed world, but if you live in dozens of other places, you may not keep your sight long enough to even think about the possibility of developing AMD.

In 2017 the World Health Organization (Who? The World Health Organization. WHO? That’s right. What? No, WHO…with apologies to Abbott and Costello.?) estimated there are 1.4 million children worldwide with irreversible blindness. There are 19 million children in this world with vision impairment. Of those, 12 million have refractive errors. In other words, we could cure 12 million cases of childhood visual impairment with glasses!

Un-operated cataracts are the major cause of blindness worldwide with a 35% share of the pie. Please note that word is un-operated not inoperable. These people could be made to see with a simple operation.

Uncorrected refractive errors come in in second place with a 21% share of the pie. Add 35% and 21% and you already have 56% of the causes of blindness, immediately putting to lie the 50% “cure” claim of that nutty headline.

So, worldwide, how much moderate-to-severe vision loss is due to age-related macular degeneration? About 8%. Please note the words did not say blindness. They said moderate-to-severe vision loss.  There is a big difference.

Do I like being visually impaired? Not by a long shot! Do I want a cure? Uhh, yeah. But do I want to feel sorry for myself and swallow every crazy headline that gets published. No!

The treatments and eventually the cures are coming, but they are not here yet. A little skepticism about some of the claims out there now is a good thing.

And, the truth of the matter is, most of us – yes, us with AMD – are pretty dang lucky. Our impairment has hit us late in life. I became myopic at age 12.  What would my life have been like if my parents could not have gotten me glasses?  How much human potential are we wasting because CHILDREN cannot see?

Think about it.

Written March 24th, 2018

Next: Overwhelmed – Again

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Another Cautionary Tale

Watching a ‘circus act’ out on the deck. The pups are now able to hit the top of the picnic table from a stand. Yesterday they got a bunch of bananas off the counter. Fought over them and rolled on them. On the living room rug. If nothing else they get points for unique and creative.

As with everything, the pups’ exploits bring mixed reactions. Some of you are laughing. Others are appalled.

The ‘big news’ of the week is making a lot of people pretty excited and happy. I imagine you heard Pete Coffey, of the London Project and University of California – Santa Barbara, is saying he will make stem cell treatments readily available to all comers in five years. He is reporting utterly amazing results for a phase 1 stem cell experiment.  [Lin/Linda here: to see the list of articles from various sources, click here.]

Whoa! Hold on for a minute! Unfortunate I must take the loyal opposition stance on this one! I am – to understate things – a tad skeptical. There are problems here.

Lin has her ways of getting things. She has a pretty good network of spies and other secret agents. One of her spies shared the published article with us. I have not read it all yet, as a matter of fact, I have barely started it – things are just not calming down around here – but some stuff I did see made me concerned.

Let us start with the timelines they lay out. This research was done in the summer of 2015 but we are just hearing about it now. Where have they been for the past two and a half years?!?!?! If this stuff is so hot, they should have been shouting it from the rooftops a lot earlier than now.

Even more suspicious? The submission date for publication was November, 2016 but the acceptance date was February, 2018! Anyone who has written a thesis or a dissertation knows what that year and a half lapse represents: a whole pot load of rewrites! What was wrong with the original work? Inquiring minds and all that.

There are other things that are wrong, wrong, wrong. Now, I applaud Douglas and the second person who wishes to remain anonymous. I really do and I will come back to why in a second. But seriously, how often can you be on a first name basis with half of a subject pool? There were two people in this study! The FDA suggests 20 to 100 people is the appropriate number of subjects for a phase 1 study. What happened to the other 18 people? This study sounds likes it is providing more anecdotal information than research findings.

And why do I applaud Douglas and the other person? They had enough guts to participate in phase 1 research. Phase 1 research is safety and tolerability, folks. They are looking for weird reactions like growing hair out of your eyeballs or having your head spin around. ( OK, so I am a little fanciful. You still get the idea.) This is not the proof of concept phase.

The Food and Drug Administration (FDA) gives an estimate of six to eleven years to get a medication or treatment through phases 1, 2 and 3. Coffey is saying he will have his treatment on the proverbial shelves in five years. Now granted, he is talking about availability in the United Kingdom, but I assume they also have a cautious regulatory agency working there. How does this get shelf ready in five years?

And these are just questions I have off the top of my head!

My emotional self would love to believe this is happening. My rational self is very skeptical. My advice would be to stay hopeful but also remain skeptical. Like puppies mashing bananas into my carpet, this study may create some positive emotions but I think there is still something wrong with the picture.

Lin/Linda here: I’ve created a page with some other concerns that we have: Considerations in Evaluating Recent Stem Cell Clinical Trial in the UK

Written March 19th, 2018

Next: Furious and Proud

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Eye Poop

Today was a “get your ‘stuff’ together” day. Every once in a while it gets so that if I don’t stop and take care of the business at hand, I will be having a screaming fit.

Like last evening for example! However, I have now gotten a haircut, gone grocery shopping and cleaned the living room, as well as having completed a few other tasks, like taking the recycling. Feeling a little more in control – I probably should not say that too loudly – and ready to tackle a page Lin suggested.

That page will be on – drum roll, please – eye poop! Okay, so that is not what they are really called. Most of the world call them drusen.

In a Harvard Health Publishing article that asks the questions: what are drusen and why do I have them, the author describes drusen as “deposits of extracellular waste”. You got it, eye poop.

In younger people, the sanitation department in eyes generally takes care of the eye poop. That ‘sanitation department’ is the retinal pigment epithelial cells aka RPEs. Yes, your RPEs are supposed to ingest eye poop. But you know what? Your RPEs are into recycling, too! They are discovering your eye is its own, little ecosystem. James Hurley at the University of Washington at Seattle and his team have discovered RPEs and the retinal cells are in this close relationship in which the wastes and byproducts of metabolism in one type of cell are the food another type of cell needs. Mess up in one part of the system and everything goes to Hades.

Why would the RPEs stop doing their recycling thing? No answers, just theories but one thing is for sure, age has something to do with it. Most people over 60 have at least a few piles of eye poop hanging around.

You know how it goes. Things don’t seem to work as well when we are older. Some messes pile up.

http://patient.info/health/age-related-macular-degeneration-leaflet

Eye poop becomes a problem when it starts wiggling in between the RPEs and the Bruch’s membrane. Bruch’s membrane is where the RPEs get the nutrients they need to feed the photoreceptors.

Think of it as a huge landslide standing between you and the grocery store. If you cannot get to the store, you go hungry and may die. If you die, those you are responsible for die too. Same with RPEs and photoreceptors.

Again, no one is exactly sure why some people get away with just a few, stray piles of eye poop and others have dozens. There is an underlying error or errors that have yet to be proven. The researchers are working on it.

The Harvard paper points out drusen aka eye poop do not cause AMD. They are just manifestations of the disease process.

Hope that was a help. Hope you understand things a little more thoroughly. Night!

Written March 18th, 2018

Next: Another Cautionary Tale

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Another $64,000 Question

Last time I discussed why we believe clinical trials and experimental evidence are so much better than anecdotal evidence. A reason that I did not include for truly appreciating scientifically derived data is a little thing called peer review.

Wikipedia describes peer review as the evaluation of work by one or more people of similar competence to the producers of the work. It is a form of self-regulation by the members of a professional or scientific community.

In order for peer review to occur, research has to have a certain level of transparency. Experimental procedures and results must be put out there for scrutiny. And that is where this page comes in.

Seekingalpha.com publishes stock market insights and financial analysis. They had a source at the 2018 Macular Society meeting where Apellis presented their findings on APL-2. Gleaning information from the PowerPoint slides, an author for seeingalpha.com developed the opinion APL-2 may not be all that Apellis has been cracking it up to be. [Lin/Linda: the full research results have not yet been published.  The slides from this meeting is the best source we have of the preliminary results.]

Why? Well, for one thing he said the rate of conversion from dry to wet AMD was 21%. Ouch. That is just about 1 in every 5 subjects. The average number of dry AMD patients who convert to wet is between 10 and 15% (although in the trial, there was only 1 person or 1% of those in the sham group who converted to wet; that’s slide 14). Rounding it off, that is about one patient in 8. There may be something in APL-2 causing an increased conversion rate.  [If you look at slide 16, they have some theories on why this happened.]

Another issue the author of the article had had to do with what should be the primary outcome measure. Apellis measured the rate of growth of the lesion. That slowed down. There was no one debating that. What was being questioned was why visual acuity was not used as the primary outcome measure. After all, if you can see, who cares how big the hole in your retina actually is?

Speaking as me, Sue, I would have assumed the size of the lesion is related to how well you see. Slower growth would mean better retention of vision, right ? Not necessarily. While Apellis reported a modest, positive difference between monthly treatment and sham at 12 months into the project, this positive difference did not persist. While at 12 months monthly treatment had lost 3.3 letters on the chart and sham had lost 4.4, by month 18 monthly treatment had lost 7.7 and sham had lost 6.4. What the hell????? The data suggested a greater loss of acuity with the treatment than without it.

Bottom line for the seekingalpha.com writer was this: don’t sink a lot of money into Apellis stock. What is the bottom line for us? How about a few questions answered? Or at least a few, clever theories? I would like to know why saved macula does not equal saved acuity. That seems counterintuitive.

Another question would be how did they get through phase 1, safety and tolerability, if subjects were coming out in worse shape (if they were; I don’t know.) ? Are the acuity data for phase 2 all that different?

And the $64,000 question: should anyone volunteer for their phase 3 trials?….that one you answer for yourself.

Lin/Linda here: I was curious as to what the exact difference is between a placebo group and a sham group.  Here it is: “Placebo and sham treatment are methods used in medical trials to help researchers determine the effectiveness of a drug or treatment. Placebos are inactive substances used to compare results with active substances. And in sham treatments, the doctor goes through the motions without actually performing the treatment.”

Written March 3rd, 2018 Continue reading “Another $64,000 Question”

“Take This & You’ll Be Cured!”

Good morning! Back again.

I am sure you have noticed that this site has a real emphasis on information and research. We value the power that knowledge can give us. We also value the scientific method.

Some people may ask why that may be. It’s simple. The scientific method and controlled experiments allow us to know with a degree of certainty what is true and what works. Things are proven to within a shadow of a doubt.

Scientific method and scientific proof stand in contrast to anecdotal evidence. I would assume many of you know what anecdotal evidence is. However, for those who do not, allow me to take the podium for a second.

Wikipedia defines anecdotal evidence as evidence collected in a casual or informal manner and relying heavily or entirely on personal testimony. For example, “The world is flat.”

600 years ago everyone knew the world was flat. You look out on the horizon and everything just drops off. Terra incognita. Proceed at your own risk because you know you’re going to fall off. (Did you ever wonder what they thought you were going to fall off into? Just a random thought there.)

It took some intrepid explorers to go out and discover there was something beyond the horizon. They came back and told people just that. However, it was still anecdotal evidence. A handful of crazy sailors telling you that the world was round. It did, in fact, take a variety of explorers taking a variety of voyages (read performing experiments) to actually convince people that the world is round. These explorers proved to within a shadow of a doubt the world was round.

And you know what? I for one am glad people did not necessarily believe that handful of sailors. We should not accept everything without proof.

Very often, this reliance on anecdotal evidence happens in medicine. It happens to people looking for ways to treat their age related macular degeneration.

We hear testimonials all the time. “Take this and you will be cured!”  “It worked for my great aunt Tilly”! That someone truly believes a treatment worked for them is great. However, without scientific evidence we are not able to review it.

Nor should we. Operating on anecdotal evidence can be dangerous. Not only may you hurt yourself doing something dangerous, you could also waste valuable resources – yours and everyone else’s – on something with no value.

Why do we only talk about things that have come from clinical trials? Because the trials are controlled. That means they have tried to eliminate any confounding variables. Confounding variables are things that are outside influences that change the effects of the treatment. In other words with confounding variables we have no idea if what we tried worked. The results could come from something else entirely.

For example, you are going on a diet to lose weight. At the same time you also start walking two miles four days a week and take exercises classes three days a week. How much effect did your new diet exactly have? No way to tell, right? There are confounding variables.

Before we review anything and suggest the treatment may be promising, it needs research backing it up. We operate that way because it is the best way. We need to provide you with the best information we can. The best comes from clinical trials.

Written March 4th, 2018 Continue reading ““Take This & You’ll Be Cured!””

Not My Fault, Not Your Fault

The combination of puppies, visually handicapped 64 year ‘young’ me and electric appliances is not going well this week. My watch got (four!) legs and walked. I managed to ‘kill’ the first floor vacuum and seriously ‘wound’ the second floor vacuum. Puppies leave things on the living room floor that I don’t recognize until it is too late. Apparently the little darlings play with things that should not be in the diet of a vacuum cleaner!

Not sure how to solve that problem. Probably just wait for the puppies to grow up. Heaven forbid that I should actually get on my hands and knees and pick everything up!

Last night our local telephone and internet providers had a few problems of their own. Of course, with all of my devices non-operational, I had no way of knowing it was their problem and not my problem. I assumed it was my fault and spent quite a bit of time trying to track down what I had done wrong.

I was not the only one. Talking to one of my gym rat friends this morning I discovered she had had the same concerns. She was convinced it was all her fault too!

Then to top things off, I had a client yesterday who blamed himself for the poor adjustment of everyone else in the family. Self-blaming appears to be rearing its head all over these days.

Never one to miss an opportunity for a page, I looked self-blame up on Wikipedia. It appears there are several theories that link self-blame and depression. There is also some indication that self-blame can have a negative effect on how you adapt.

Of course, then I thought about all you fine folks who may actually believe you have caused your vision loss. Those who play the “if only” and “I wish I had” game.

Sometime in your life, I assume you have heard the saying “hindsight is 20/20.” There is no way you can predict and prevent everything that may happen to you. It truly is what it is. We do the best with what we have. We have no way of truly knowing the future. We make the best decisions we can with the information available.

And something I often say to client: do you really believe you are so omnipotent that you can control everything that happens and the way that everyone feels? If you are truly that wonderful, I would like a few stock tips or at least some idea who was going to come in first at the local race track! If we try a little argumentum ad absurdum we can really spin this. Assume that you are omnipotent and in charge of everything? Perhaps you are a deity! ?

In short, blaming yourself for what has happened to your eyes is nonsensical. Do we all have bad habits? Absolutely! Have I told you about my diet? But I also watch my weight and exercise. Those are supposed to be good preventative factors; yes? What happened?!?!

Unfortunately, I have all sorts of static variables that give me a predisposition to AMD. Not much I can do about it. It is what it is. Not my fault. Not your fault. In the end, it just is.

Written March 3rd, 2018 Continue reading “Not My Fault, Not Your Fault”

News Briefs

Dreary Saturday. It is cold and rainy. The chill gets into my very core. I would rather have a foot of snow than this stuff but then no one ever asks me. Also, a lot of people really don’t appreciate my preference for snow! Obviously not skiers.

All afternoon I have been curled up on the couch with my iPad. Decadent. Really don’t like to do this but I wanted to finish a BARD book I had started and I was working on level 1005 on Panda Pop. Make that STILL working on level 1005. Not going so well.

Anyway, I do need to mend my wanton ways…later.

My email is full of news briefs from eye sites. ? There is a ton of information out there. One article healio.com sent me was Specific gene variants play role in response to Anti-VEGF treatment. Once more it appears our genes are our destiny, at least for now.

We all know medicine is headed towards ‘personalization’. There is evidence for a vitamin supplement/genotype interaction and now it appears there may be an interaction between your ‘eye shots’ and your genotype. A study in Spain grouped together good responders and poor responders to ranibizumab (Lucentis). Then they did genetic testing on the two groups. Guess what. Genetically these two groups were significantly different. The genes that responded well were thought to be CFB, VEGFA and VEGFR1. Poor respondents had certain variants of SERPINF1 and CFH.

Among the non-genetic markers? Smoking and high blood pressure were both associated with poor outcomes.

In coming years it should be interesting to see what is going to happen between genetic testing and privacy rights. Also with genetic testing and attempts to withhold services. Will you have to pay more for insurance if you have ‘bad’ genes? Thinking I may be glad if I miss THAT aspect of our brave new world.

Healio.com also reported the Argus II was recently implanted in the eye of a man with retinitis pigmentosa in Singapore. Remember RP people are generally ‘big B’ blind. This thing is not for us who have comparatively good vision.

And for our friends with RP here in the States, Medicare will now pay for the Argus II in 28 states, two territories and DC. Recognition of such innovations as ‘medically necessary’ is paving the way for other innovations that will be coming. Read, accepting the Argus II for RP patients will ‘soften up’ policy makers so they are more likely to pay for things we as AMD patients will be able to use. I find that a lovely thought. (So I am manipulative, conniving and self-centered. Wanna make something of it?)

Pretty much it for now. I have not done much today and I am feeling like a bit of a waste of space. Need to accomplish something. Maybe just one more shot at that level in Panda Pop? ?

Written February 24th, 2018 Continue reading “News Briefs”

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