Geez, It’s Dark in Here!

Back again. I don’t want to scrub the floor or score a test, soooo….a page!😁

Still checking out short blurbs from Modern Retina. Rosenfeld reported that low-luminance visual acuity deficits are predictive of the rate of geographic atrophy (GA) progression. Low-luminance visual acuity is basically night vision.

Following up on this I discovered that back in 2008 Janet Sunness found GA patients who reported poor night vision were much more likely to go legally blind than their GA peers who could see better at night. These people made up the quarter of their GA patients (visual acuity of 20/50 or better) who became legally blind within four years.

I believe them but still have a couple of questions. Recovery time from being ‘blinded’ by bright light is forever for me. Leave me there and come back in an hour.

Night vision is not bad. I prefer to walk without a flashlight because I see better to navigate. How can that be considering I am one of those who became legally blind?

The study measured night vision by seeing how much could be read in low light conditions. Reading in low light, I am not so good. Maybe that is the difference.

Anyway, if you cannot afford a lot of fancy testing, seeing how much you can read at dusk may give you some idea of how bad things are going to get. Just what we want to know; right? How bad things can really be.

And in other news, inflammation remains a target for the AMD researchers. Lampalizumab, aka ‘lamp stuff’, blocks complementary factor D to help control the alternative complement pathway (that thing again!) and reduce retinal inflammation. ‘Lamp stuff’ is said to work with carriers of the complement factor I at risk allele. Considering​ Regillo wants to start poking needles in my eyes come 2018, I cannot help but wonder if I actually have that gene. I would hate to be poked in the eye every month to no good end.

Maybe I would rather use POT. 😋That’s POT 4. POT4, aka APL 2, blocks all three pathways of complement action at the same time. They are looking to develop an intravitreous shot that would be very long-term. None of this four to six weeks business.

And talking about shots, I just lost the article somewhere in this mess (not domestic goddess material; remember?) but I also read a short article taking about a new, medication delivery system they are working on in the UK. This team has been working on developing a little, bitty molecule that can permeate the layers of the eye and deliver medication to the retina through daily eye drops and not monthly shots. Not only will the people getting the shots approve, but the NHS (National Health Service) will approve because it will cut the number of office visits way down. Save money. Ka ching! [Lin/Linda: never fear, I found the article, click here.]

So there you have a review of some of the articles I pulled off of Modern Retina. They have lots in the works. Some of it is promising and some proves not to be, but they are zeroing in on treatments (plural because with a condition caused by multiple genes I believe there will be multiple avenues of attack). We are getting closer to answers. There is hope. Continue reading “Geez, It’s Dark in Here!”

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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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Enjoy the Show!

Afraid I am not getting very far in the housework department today. Dishes in. Laundry in. I took Windex and a paper towel to all of the glass in the house. I deserve a break; right?… So glad you see it my way!😀

I am supposed to go to Manhattan next Saturday. Uptown. The person taking me wants to see the Cloisters and the New York Botanical Gardens. Fair enough. I will take it.

It got me to thinking, though. What if I decide to do my idea of the Big Apple? Port Authority, lunch in Little Italy or Chinatown and then a Broadway play.

Just for giggles I did a little digging about audio description and live performances. I am pleased to say, if you live long enough to actually snag a ticket to Hamilton, you can get it with audio description! Also, Aladdin, Wicked and the Lion King! Not to slight the Book of Mormon because they offer it too.

Since audio description is the new kid on the block when it comes to accessibility, it appears that is the list for Broadway right now. If it is a big selling point for them, others will offer it. The law is the accommodation has to be ‘readily achievable’. That means a big budget and available describers.

If you are not planning a trip to ‘The City’, the Audio Description Project provides lists of performing arts presentations with audio description by state. For our friends in Massachusetts there are four, different venues offering audio description for live theater. These are all in the Boston area. Minnesota lists a crazy number of potential offering and Nevada lists…one. Hmmmm.

If you are in London you can experience the rock opera Tommy with audio description. They also have Wicked and the Lion King and a score of others including Jesus Christ Superstar. Most of them are described by a service called VocalEyes although many others offer the services with in-house staff.

VocalEyes? From the little bit I gleaned it appears they are a not for profit operating pretty much all over Britain. They seem to describe everything from Sesame Street to Shakespeare.

So the good news is there is a limited number of venues in many cities that offer the service for live performances. You can continue to go to the theater occasionally. You appear to have a much broader selection in London than any city here stateside. (Fine by me. I’ll go. I like London.)

US or UK though, you still have to ask for the service. For Broadway, Arts Access has a page describing the request process. Once again you have to jump through some hoops and be flexible, including allowing two weeks lead time. Not sure how it is done in London but the Access London Theater site should be able to help.

Hope you enjoy the show! Continue reading “Enjoy the Show!”

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Counting Toe Hairs

Hey there, hi there! I have no idea where this page is going so we will all be surprised when I get there!

Fun fact, actually fun, weird fact: Caroline Messer of Mt. Sinai Hospital says you can tell about extremity circulation by the hair on people’s toes. If you do not have fuzzy toesies you may be having circulation issues, potentially related to diabetes. Isn’t it amazing what you can learn in the internet?

So, everyone take off your slippers and see if you have hair on your toes. If you do not and do not already have a history of poor circulation in the past, you very well may have one now. Call your doctor, but do NOT say you are worried about non-fuzzy toesies! Some of us have to avoid the psych ward.😋

Relevance to sight loss? Well, I could say I mentioned it because of diabetic retinopathy but that is not totally true. Sometimes I like News of the Weird.

And that said, I guess I can continue on the note of general health and also on some things that are not mainstream to Western culture. Specifically? The stuff my yogini gets into.

Right now my yogini is doing more study in energy flow. Chakras, prana, etc. I only heard the word ‘Vayu’ for the first time yesterday but I have the feeling I am going to hear it many more times.

Something she said last week was intriguing though. She said she has read a scientific article on the benefits of chanting “Om”.

Now Nicola Tesla said “if you want to find the secret of the universe, think in terms of energy, frequency and vibration.” Thinking the chanting vibration does SOMETHING would be logical.

Looking around the web I have yet to find something that has scientifically proven the benefits of vibrations. However, there are many, many people who believe in vibrational medicine. I found out chanting, Reiki, and aromatherapy are all considered to be vibrational medicine. Also light stimulation and music therapy. I know dozens of people who engage in those things (but then birds of a feather…maybe it is just me).

According to James Oschman in What is Healing Energy? Part 4: Vibrational Medicines, molecular oscillations are absorbed by the living matrix and conducted through the body. Sort of sounds like a full body ‘tune up’ (pun intended 😎) on a molecular level.

Sound sensible? Yeah, to me, but with no proof I am not recommending vibrational medication as a cure for anything just yet.

Just the same…..deep breathing and chanting can be very relaxing and mindful, helping to reduce stress. “Om”, actually stretched out to “a,u,m” is sort of a cool thing because it ‘tickles’ in chest, neck and head in succession. Concentration on that progression can be a good mindfulness exercise.

And the best things about chanting? It is free and you can do it in the privacy of your own home.

One thing, though. Don’t let them catch you counting toe hairs OR chanting! You would have a lot of explaining to do and I will not be held responsible.

Continue reading “Counting Toe Hairs”

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Best Places to Live

Hey, happy Saturday! Feeling a little better. My husband dropped me plus the bike off at the church where the yoga benefit was being held. Second time in two days I was in a house of worship. So far nothing has blown up or caught fire so I guess I am safe!😇/👿

Did two classes. Had a banana split at the ice cream parlor. Got money out of the cash machine. Rode home. I would have gotten some leaf lettuce at the farmers’ market but I forgot they close at noon.

Before I forget, I just want to quickly note my bike mileage is now over 50 miles. Am I going to get my usual 300 for the season? Maybe not, but 50 is better than the seven miles I did last year. Adaptation and increased accomplishment are possible.

Anyway, back on track, as I was puttering around in town it dawned upon me I am pretty lucky to be living in a town that not only has the basics but a few amenities, most of them easily reached from the town center. Then I started thinking about a little concept called livability.

Livability is a “different strokes for different folks” sort of concept. I like having four seasons. I like having a lot of green space and opportunities for outdoor recreation. I also like access to cultural events. Spectator sports? Nope, but for some of us that is an important consideration.

Being part of a ‘special’ segment of the population means we have similar needs, though. That means there should be towns and cities that fit us as a group better than other towns and cities. And that begs the question: where are all the other disabled people moving?

Wallethub.com did a study just generally for disabilities. Generic. This study looked at cost of living, medical facilities, jobs filled by the handicapped, etc. Their overall ‘winner’ was Overland Park, Kansas.

The American Foundation for the Blind did a study in 2003. Not sure how recent the update is (2017?) so caveat emptor once again. Don’t pull up stakes and head for Charlotte, North Carolina, the number 1 pick, until you have checked the current data.

Why Charlotte? Decent public transportation for one thing. City ‘walkability’ is good and there are some audible traffic signals. Such accessibility features allow for more independence for low vision residents.

Don’t want to move to the east coast? Berkeley came in second.

I looked for the best places to live with a visual impairment in the UK. Got nothing although there were some thoughts on where to go for an accessible vacation.

Canada? Burlington and Hamilton got good, general ratings but nothing specific to those with vision loss. If you want, you guys can come on down here. I think there should be room. 😁

And now the discussion questions: what do you need for a town or city to be more livable for you? Can you find those things already in your community? Can you advocate for those things to come about? Change is possible. We just have to be willing to do the work Continue reading “Best Places to Live”

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Letting the Dust Settle

Good morning. Mildly frustrated….again. Suspecting this is the usual state for people with vision loss in the ‘mature’ years (and whom, exactly do we think we are kidding with that ‘mature’ business?😎)

The online dictionary gives the definition of frustration as “the state of being upset or annoyed especially because of the inability to change or achievement something”. Yep, that’s me. Upset and annoyed.

I miss my freedom and flexibility of movement. I want to be able to go where I want to go and do what I want to do when I want to do it. And I don’t want everything I do to be such a damn project!

I got back to hip hop this week after three weeks of missed classes. Variety of reasons. But then Tuesday I ended up staying home because I had gotten the feeling I had overstayed my welcome with that ride. (Take the hint, girl!) Wednesday I was going to ride my bike to yoga in the park but I got out of work too late. Tonight I tried a different class, one the Y is offering in place of yoga, and really did not like it. Honestly! Niggling little frustration after niggling little frustration!

Then, of course, I feel guilty. I had arranged for transportation, but two people inquired how I was getting home. Either of them would have volunteered to bring me home. That is not a requirement. They are kind. How can I be so frustrated when I am surrounded by kind people? What is wrong that I cannot appreciate what I have?

Summer plans are starting to formulate. I am one of the most fortunate people I know because I have people willing to take me to yoga events, blues festivals and even into ‘The City’. [New York City, that is.] Am I thinking of that? Of course not! I am thinking about how I am going to finagle transportation! How can I get to the kind souls so they are not driving so much? How can I be less of a burden?

When I start thinking this way I start to get very willful. I dig my heels in and say things to my husband like “Fine! I don’t care! I will walk!” Yeah. 20 miles in the snow uphill…both ways. Problem is: I would actually try!

In DBT the question to ask someone who is being willful is “What is the threat?” What is it you are defending against when you dig your heels in and insist things be your way? Pretty good question because dollars to donuts I am defending against something!

In my case, I think I am defending against the loss of my lifestyle. The loss of my identity. Realistic fear? Certainly not for a couple of confused weeks. Best to let the dust settle. See how things shake out to use one more of my colloquialisms.

Of course, my style tends more towards blunt force than patience. I don’t totally embrace everything I teach. Apparently I also have some learning to do. Continue reading “Letting the Dust Settle”

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“I Don’t Want to Go There!”

Lin showed me one of the conversation threads from the Facebook group. She thought we might do a page or two on the topic. The topic was the reactions of partners to our vision loss.

After looking for some time last evening and today, I have accumulated a few bits and pieces on the subject. Some of the information is 20 years old. A lot of it is anecdotal (ie, based on personal accounts). In general, however, there is not much.

If we as the visually impaired population are being treated like mushrooms – you remember, being kept in the dark and fed bullshit – it appears the treatment of partners of the visually impaired is even worse. They are pretty much ignored!

I did find one anecdotal piece that may be food for thought. Sam Dylan Finch wrote about his partner who has an ‘invisible disability’. I am going to take some of his comments and expound – liberally – upon them.

Finch talks about time going on and the feeling nothing has really changed. Sort of “this is what it must be like in Limbo”. There are more old chestnuts to describe this state of affairs. Waiting for the other shoe to drop. Poop or get off the pot. Most of them just have the feeling of uneasy anticipation. “Get on with it already!”

I imagine sometimes our partners want to scream “Just go blind already! Stop talking and get it over with!” The anticipation of impending doom can be overwhelming.

Not having an answer to this disease is – bluntly put – a pain in the ass. I suspect we are all intelligent people with many successes under our belts. Ditto for our partners. There are few things we have not finagled our ways out of. Why is there no way out of this? And aren’t our partners supposed to help us? Yet every time they come up with a ‘new’ idea, we have already seen it. And to top that off, it is still in stage 2 clinical trials and Lin and Sue said the results were questionable! At best they might feel redundant. At worse? Helpless.

A thought I just had is this: how excluded might our partners feel? Suddenly we have become the ‘other’. We have entered a secret society that the only way they can enter is to lose their own sight. Not going there!

But just the same, we seem to suddenly have all these online acquaintances who understand us in a way our partners do not. We share a reality our partners cannot enter.

Finch talked about the guilt associated with resentment. Partners take on more responsibility. That is more on top of what they already have. Some people look down the road and imagine servitude, constantly at the beck and call of a ‘blind’ partner. Those folks don’t want to talk about the disease. Ignore it and it might go away. Keep me from becoming chauffeur, housekeeper and nurse. I don’t want to go there! And if we cannot stay away from that fate, don’t make me feel guilty about fearing it.

So that is my elaboration of Sam Dylan Finch’s points about having a disabled partner. How does it sound? Any thoughts? Continue reading ““I Don’t Want to Go There!””

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