My New Career?

Not to belabor a point, but today did start as a rather poopy day. We had our first snow overnight. Just a couple of inches but it was the puppygirls’ first snow. My theory is this: when they went out and squatted to poop, they got cold, wet bottoms. Go inside and poop? No cold, wet bottom. Problem solved!

Of course, since my husband was first on scene and got to clean it up, he was NOT a happy camper. Not a good start to the day.

Then there was the snow itself. Getting to my eye appointment is a 90 mile trip one way. My husband does not like city driving and he does not like driving in the snow. Once more he was not a happy camper.

It is hard to explain to some people why we have been dutifully driving 90 miles one way, every six months just to be told my eyes are worse. “Please pay your copay.” For those kind of results, I could go five miles down the road!

However, it is all part of a master plan. I have real problems with defeat. Real problem being told there is no answer. If you cannot supply me with an answer, I will find someone who can!

So here I am, running to see Regillo every six months for the past two years….and I think I am getting closer!

First the good news/bad news. Or, in this case, bad news/good news. Although I find it hard to believe, I have fallen down below 20/400 acuity. Bizarre because I don’t feel blind and don’t think I function as a blind woman.. After all, I got the “you don’t look blind!” routine just last month.

However, the good news on that is my vision is now so bad, I can satisfy the truly awful vision requirement for the Astellas’ study that is supposed to launch in March! Regillo referred me again. Is this time four or time five? I have sincerely lost count. [Lin/Linda: I put the details to that study in Sue’s page The Waiting Game.]

He has also put me on the list for APL-2 which is supposed to go into phase 3 clinicals sometime in 2018. He started to offer me “something else” when we were talking about lamp stuff (which is apparently very dead in the water) and I surprised him by knowing exactly where he was going. Working on being memorable. I want my name at the top of the list. [Lin/Linda: Sue wrote about APL-2 in her page My Friend in Manila?]

Also thinking I may be getting closer because I got a new test today. They ran me on the autofluorescence test. This test uses a very bright light. When the image is examined, the areas of the macula that are already dead are black and the areas that are in distress shine. My eye probably lit up like a Christmas tree. If that gets me into a study and gets this stuff stopped? Good.

So, that is where we are. I got a new test. I chose to be hopeful it means they want more information for my new career as a lab rat! Regillo generally seemed positive. Maybe I will be going to Philadelphia.

Written Dec. 14th, 2017 Continue reading “My New Career?”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
My New Career?
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Home Again

Greetings! Home again and it seems as if we were never gone. That nearly two weeks just flew! The only way I can be sure we were gone is I am freezing! There is about a 40 degree difference in temperature between the Caribbean and home. If I ever disappear you are all welcome to come looking for me. You can start with Costa Rica.😎

Because a WiFi connection was something like 79 cents per minute from the ship, I have been very out of touch. I just did a little research and it appears the second half of the Lampalizumab study also failed in phase 3. That was the Chroma study. Spectri was the failure announced back in September. Or maybe it was the other way around. Anyway, it appears they both failed to meet the desired endpoint in the study. In an article in Healio.com Jeffrey Heier said they have collected a great deal of information they still have to analyze. They are hoping to be able to use this information to better understand geographic atrophy and also to develop new ways of fighting it.

Personally I am still perplexed as to why lampalizumab did so incredibly well in phase 2 trials but failed in phase 3. According to what I have read three-quarters of treatments that pass phase 2 pass phase 3 with no problems. Tis a mystery. Maybe the folks at Genetech can find the answer to that one.

I have already written a bit on BEST disease. That is the AMD disease that is not really AMD. I know at least one of our readers has BEST. October 25th News Medical published the results of a “disease in a dish” study done at Columbia and the University of Rochester. They took skin cells from people with BEST disease and regressed them to become pluripotent stem cells. They then took these stem cells and ‘nudged’ them into becoming retinal pigment epithelial cells.

As expected, these RPE cells growing in a dish (meaning they had no outside influences on them) did the same ‘bad things’ that happen in an eye with BEST disease. Once again this is a strong indication the problem is in the genetic coding.

So far this is old news, but the rest of it is not. The researchers found they could actually reverse early damage through gene therapy. They introduce healthy copies of the faulty gene using viral vectors. Once their codes were corrected, the cells started to recover and to perform like healthy RPEs.

Ready for prime time? Not hardly. This research is still happening in a petri dish. However, the rate at which this sort of research is progressing is startling and if I had to take a shot in the dark, I would say clinical trials may only be a few years away.

Hang in there and stay optimistic. We are making progress daily. Me? I have to make progress on vacation laundry!

written November 11th, 2017 Continue reading “Home Again”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 5.00/5
Applies to topic
Avg: 5.00/5
Helpful to me
Avg: 5.00/5
Home Again
Total Avg Rating: 5.00 out of 5 with based on 1 rating(s)
Overall quality
Applies to topic
Helpful to me

Hard to Know

We made it to Fort Lauderdale earlier this afternoon. We thought we could go and walk along the intracoastal waterway this evening but they want $50 to drive us there and back. No thank you! I guess that means you are stuck with me.

We flew Delta from Pennsylvania. My husband is sighted and was able to navigate through the airport for me. Overhead signs telling us about arrivals and departures were nothing I was able to read. However, if I had been traveling alone Delta does provide personnel to help the visually impaired from gate to gate. You can either alert a skycap or have your driver alert a skycap when you pull up at the curb. Detroit airport is massive. While I could have made my way by asking random people for help, it would have been easier with somebody assigned to me.

I looked over the Detroit airport accessibility plan. It was pretty much ADA right down the line. Heavy on physical disabilities. Same for the Lauderdale airport. Visual impairment does not get a lot of ink when they write these things.

I have my phone set so I do not get roaming charges while we are abroad. There are instructions online about how to go into settings to do that.

Both hotels we have been in have courtesy WiFi. Once I had trouble connecting and the desk clerk helped me with no problem. If you let people know you have a vision problem, they will help.

Being a tech novice and also fairly new to visual impairment, I am not sure how to work my phone GPS without having the phone data on and subject to roaming charges. Pretty sure there is a way but I am not sure what it is.

Oops. Yes, there is an online tutorial for that. You have to load the maps you think you will need before you turn off your data. Live and learn.

I got GPS on my iPad alright. I guess I will just need to carry that in case I get separated from my husband and need to navigate on my own. I can get GPS through Google Maps by using WiFi.

And since I have WiFi here at the hotel, I guess I can look at some articles. I have about 100 words to play with.

Just to complicate matters, Medscape recently did a post on genotyping and nutritional supplements. Assel et al quoted three studies all of which suggested there is no significant relationship between your genotype and your chemopreventive diet selection. What they are saying is “to zinc or not to zinc” is not a question. If you are a candidate for nutritional supplements, whether or not you use zinc does not make a difference.

Sometimes it is hard to know what to believe; huh?

Catch ya later. We get on the ship tomorrow around noon. Then I go black until Cartagena.

Written October 30th, 2017 Continue reading “Hard to Know”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Hard to Know
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Puzzle Pieces

Waiting for the shuttle to get to the ship. My husband made the comment how rough it is being stuck at an out-of-the-way hotel with no car. I welcomed him to my world.

Having been in two, different hotel rooms in the past 48 hours, I have made a discovery: spatial memory does work. I have yet to run into anything on my way to the bathroom in the middle of the night.

Secondary lesson on that is to trust yourself. We learn our surroundings rather quickly. Pretty much pitch darkness in a hotel room yields less information than the sight we will eventually have left will yield. Put down a memory of your space and use that memory to navigate.

Never really thought about using spatial memory until now. Never really thought how it can enhance one’s ability to move around in the world. Now I realize it has always been there for me. Now I am starting to realize its value.

As I have been hanging out here, my new edition of Healio.com newsletter arrived in my email. The one article is possibly not the best of news. They have discovered a correlation between Posterior Vitreous Detachment (PVD) and both wet and dry forms of AMD. Partial detachment happens more often in patients with wet AMD but total detachment seems to happen more often in those with the dry form.

Posterior Vitreous Detachment happens when the vitreous shrinks and pulls away from the retina. We have talked about macular holes before. They occur when there is an adhesion and that tugs on the macula. Retinal detachment can occur when the vitreous shrinks. Floaters are more common.

The authors of the study suggested there might be something ‘different’ about the vitreous retinal interface in people with AMD as compared to those of us who do not develop the disorder. They suggest this is just one more path that needs to be explored.

Which I guess can be looked at two ways. Some of us look at one more thing that is wrong with our eyes and despair. Legitimate point. Our eyes are a mess, true, but there is another way to look at it. Anyone notice how eye researchers all over the world are ‘feeding off’ of one another? For every researcher who finds a new piece of the puzzle, there is another one who can take that piece and pop it into the part of the puzzle they are working on.

Anyone ever do jigsaw puzzles? Yep. Every time we find a piece we realize even more fully our puzzle is not 100 pieces but more like 1000 pieces. But often when we find that piece on the floor or in the chair cushion the guy across the table says “hand that here. I think I have a place for that.”

Just one more piece of the puzzle discovered. They will all eventually fix somewhere

Written October 31st, 2017

Next: Postcard from the Cruise Part 1

Home

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 5.00/5
Applies to topic
Avg: 5.00/5
Helpful to me
Avg: 5.00/5
Puzzle Pieces
Total Avg Rating: 5.00 out of 5 with based on 1 rating(s)
Overall quality
Applies to topic
Helpful to me

Before I Go

Waiting a bit before I bathe and get clean clothes on to start the trip. Hate to start out in half dirty duds. Not to mention a half dirty me!

Just got another phishing email. Jeez. I never even knew I had an account in that bank! And to top it off, their noun/verb agreement was wrong. Grammar and usage as fraud detection. One more reason to pay attention in language arts.

Moving on…

Living Well With Low Vision had a recent post on subretinal implants for dry AMD. We are back to Steve Austin again. Remember the Bionic Man? “We can rebuild him? We have the technology?” Yep. Now we are featuring the Bionic Senior Citizen.

We have talked about the Argus 2. That doesn’t appear as if it is ‘for us’ just yet because the quality of the image is poor. Sort of falls under the heading “something is better than nothing”. If you got nothing, it is great. Those of us who visually “got something” might be best to wait some on that.

The new one is called PRIMA by Pixium Vision and it is being developed by the French. Now we are talking early days on this. Just coming out of animal trials so don’t get too excited just yet.

PRIMA is a tiny, wireless subretinal implant that could speed prosthetic vision up to the speed of video. The French team, according to Pixium Vision CEO Khalid Ishaque, built on a concept that initially came from a team at Stanford. Real cross cultural and multinational initiative. Probably a political statement there but I won’t get into that.

PRIMA goes into phase 1 trials sometime in the next couple of months in France. They are starting with five patients with advanced geographic atrophy.

Concurrently, Pixium Vision is petitioning the FDA to try to get U.S. feasibility studies up and running. That could take a while but it is in the works. U.K.? Sorry guys. No clue. Anyone know the reciprocity laws between France and Great Britain when it comes to medical technology and research?

Adding one more, short article review here. They are also experimenting with using lasers to ‘zap’ floaters. The laser they are using is the YAG laser. Neodymium-doped yttrium aluminum garnet is a crystal. Just in case you wanted to know. No? OK. I won’t go into that.

While this type of laser has had multiple uses in ophthalmology up to this point, they are just beginning to use it to play Asteroid Blaster with floaters. Comments published in the Medscape article suggest great care be taken in using YAG lasers for this purpose. More and better organized clinical trials are needed.

That is pretty much it for now. I will be ‘WiFi enabled’ for two more days. After that, I will be shipboard. Online time is obscenely expensive at sea so I will actually have to shut up for awhile. Do you think I can stand it?  [Lin/Linda: anyone want to bet on this? ::grin::]

Written October 29th, 2017 Continue reading “Before I Go”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
Before I Go
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me

Three Types of Wet AMD

Well, the kitchen floor is now mopped. Took a deep breath and went back into the housekeeping fray after that last page. How do people get motivated for that sort of thing every day?

With a nod to our ‘wet’ readers, I am going to tackle an article on how to image different types of neovascularization. Not sure I am going to get very far because I never even ‘knew’ there were different types of choroidal neovascularization.

First off, to the article talking about imaging retinal angiomatous proliferation. Huh? Back to EyeWiki.

Choroidal neovascularization starts in the choroid. It erodes through the RPEs and results in chorioretinal anastomosis. Anastomosis? Lovely. Anastomosis is the connection of two vessels that were not previously connected. Sort of like a shunt. Got it? Good; moving on.

Retinal angiomatous proliferation is a process that happens ‘backwards’. It starts in the retina and progresses into the subretinal areas. It eventually connects the retina and choroid by forming an anastomosis. That is a connection where there is not supposed to be one. See previous paragraph.

Retinal angiogenesis proliferation has been called type 3 neovascularization. This begs the question: what are types 1 and 2? Type 3 is rare with 10% to 20% of people with wet AMD having this type of disease. This may be a good thing because the article lists all sorts of complications that are common in type 3 but rare in the other two types.

So now I have to do a little more digging and find neovascularization types 1 and 2. Back to EyeWiki where I discovered this: In type 1 the new veins are below the RPE layer. In type 2 the neovascularization passes through the RPE layer and compromises the neurosensory retina. That means it gets far enough to directly mess with the photoreceptors. Type 1 is hidden and type 2 is classic.

As far as treatment is concerned, ResearchGate.net (7/15) suggests type 1 can be treatment resistant. My guess – please note this is a guess – would be this is because type 1 is ‘buried’ in lower regions of the eye and anti-VEGF may have a harder time getting to it. That buried nature of type 1 – and another article – makes me think what we are talking about here is the occult type. Saw that classification before. Just needed to make the connection. Dawn does occasionally breaks over Marblehead.

Anyway, anti-VEGF treatments are still first choice although I am starting to see references to photodynamic therapy (“cold laser”) and even surgery. Maybe we should look into that, too.

Type 2 is the classic type. My reading suggests ‘shots’ are the treatment of choice there.

And as far as type 3 is concerned, it appears that in spite of the complications reported, type 3 can be treated rather successfully. Anti-VEGF injections do the trick, sometimes even on the first try.

So there you are the three types of wet AMD. Learn something new everyday.

written October 24th, 2017 Continue reading “Three Types of Wet AMD”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 5.00/5
Applies to topic
Avg: 5.00/5
Helpful to me
Avg: 5.00/5
Three Types of Wet AMD
Total Avg Rating: 5.00 out of 5 with based on 1 rating(s)
Overall quality
Applies to topic
Helpful to me

An Exercise a Day

Hey. It is Sunday. I have changed bedding, mopped the bathroom floor, done dishes, done laundry and written most of a psych report (why don’t people look on the backs of checklists?). I have HAD IT. No mas. Break time. The sun is shining. It is around 75 degrees outside (screwy weather) and I am heading for the deck.

Sunday has become my work around the house day. Monday it is back to the real world and if I want to get anything done at home, it has to be done Sunday.

Heaven help me when I am no longer working and don’t have the press of deadlines. Nothing will ever get done!

Feeling good about getting a pup. We picked the lively and inquisitive one. I know she may be more of a handful than any of her sisters but I need a walking buddy. I have been “going to walk the dog” for more than 60 years and going to walk by myself feels wrong.

Bringing me to the promised topic, as well as the promised nagging ?. Exercising is great for avoiding depression!

We have talked about the crazy percent of older people who are depressed and the even crazier percent of older VIPs who are depressed.

Right now many of us are not going to improve our visual standing anytime in the near future. Gotta live with that. That leaves us with fighting the second dragon, depression.

Our friends whom we have not met yet in Nord-Trondelag county Norway have been participating in a huge, as in HUGE, longitudinal health study that started in 1984. One of the things they were measuring was the relationship between exercise and depression. To begin with they found an exercise a day keeps the psychiatrist away. Those who did not exercise at the start of the study were 44% more likely to develop depression than exercisers. Total amount of exercise and depression were negatively correlated (more exercise went with less depression). However, they also found as little as one hour of exercise a WEEK reduced chances of depression by 12%!

Similar studies in Sweden and the United Kingdom found similar results. The benefits of exercise were seen in everyone, including older folks, and the intensity of the exercise did not matter. Easy was OK. Small doses were OK. The idea was to move.

Of course – pushing my luck with some of you; I know – aerobic exercise and focused attention meditation twice a week has been found to improve depression in two months or less. That research comes out of Rutgers. The Rutgers study sequenced the two, one after the other, but it is possible to get both exercise and focused attention in one activity. I am talking about the Eastern practices such as yoga and tai chi.

OK. End of lecture. Just hoping to find one convert out there somewhere. It really does work. Any brave soul out there who wants to try it? All you have to lose is your depression.

October 22nd, 2017 Continue reading “An Exercise a Day”

Ratings

  • Rate this
  • Summary
Current Average Ratings
Overall quality
Avg: 0/5
Applies to topic
Avg: 0/5
Helpful to me
Avg: 0/5
An Exercise a Day
Total Avg Rating: 0.00 out of 5 with based on 0 rating(s)
Overall quality
Applies to topic
Helpful to me