Category: Sue’s Musings

Is the Waiting Game Over?

It is hard to recall exactly where in my personal journey we left off. Lin was very ill and things took a backseat. We have also been writing for Health Union’s site maculardegeneration.net and what I wrote about what and for whom is blurring.

Lin tells me I never told you I was in line to be included in a clinical trial..maybe. I say I’m sure I did…I think.

Be that as it may, let me tell you, even if I have told you before, I am in line to be included in a clinical trial. Sort of anticlimactic after anticipating something for three and a half years, but better late than never. [Lin/Linda here: check out Sue’s pages The Waiting Game and The Waiting Game Continues.]

I had wanted stem cells. Someday I will get stem cells, but just not today. What I am in line to get is APL-2. APL-2 is a complement factor inhibitor. It is in phase 3 clinical trials for Apellis. It’s been granted fast track status by the FDA which means its development and review will be expedited to get the drug to patients as soon as possible.

I was not super excited about APL2. I have not been able to read the published journal article on the phase 2 research because it has not been published. Poster presentation of the data suggested a slowing of the lesion growth by between a third and a half. There was no comparable reduction in the rate of acuity loss.

It really did not seem to me that that dog would hunt. I was less than enthusiastic but my retinologist assured me he thought it was great stuff with lots of potential. Also, it was the only game in town and I had gotten tired waiting. I told them I would be interested.

What is it? APL-2 is a complement C3 inhibitor. It interferes with the chemical changes that eventually lead to the immune system attacking an “invader”. However, this is a good thing because AMD is an autoimmune disease and the “invader” that is being attacked in this incidence is the host himself.

I am keeping my name in for stem cells…for now. Once I am enrolled in the trial, I am no longer eligible for inclusion in any other research. Better the bird in hand. APL-2 is next up and my retinology team does not appear to have anything else to offer me.

Like I said, I am tired of waiting and feel the time is right for me. I have a steady income I no longer have to actually work for and some flex in my schedule where I do work. My eyes are not getting any better and I remain a “good” candidate, relatively free of other medical concerns. For me, it is time.

The new master plan if I get in the study? Lobby to get into – or maybe I may even had to lobby for – the study to see how stem cell RPE replacement works in eyes treated with APL-2. Then, generously volunteer for photoreceptors replacement research. Nobody ever said that was no method to my madness.

In the meantime, it is all a waiting game. I have discovered research is a maddening, not at all straightforward endeavor. They ask a series of tantalizing questions and they you won’t hear for months. What happens next in my personal story? Well, I do have some other pages coming your way…

Written June 20th, 2019

Next: Traveling Blind Again

Goofing Up

I hate to feel stupid. I have had a life of being, if not the sharpest knife in the drawer, at least one of the sharpest. It is totally frustrating to make mistakes!

These days I have a tendency to read clocks and watches wrong. This morning we were out the door much earlier than we needed to be. We sat and waited much longer than we should have had to. My fault. I read the time wrong.

I suggested to my husband that he should start double checking me. I am not sure he still quite “gets it”. He is used to me running the show. Calling the shots. OK, he is also used to my objecting if he questions me. This ‘goofing up on the simplest things Sue’ is new.

Then I had to have my camera checked. My auto focus wasn’t. I was afraid it was a serious issue. We leave on vacation in a week! I need my camera!

Nope. The problem was I had somehow turned off the auto focus. I did not realize it. I could not see that extra, little switch. My camera guy was going to just tell me about the possibility in an email, but he decided not to. It would be quicker and easier if he just did it. After all, I miss things. I don’t get things. Things have changed for me.

Oh, well, at least my photos will be better. It has been years since I was able to focus a camera. Let the auto focus do it…now that it is on.

Then off to the hospital for blood work. There is a list of names on the monitor on the wall. Look for your name. Yeah. Right. I have to get to about a foot from the monitor to read my damn name. Should i get a chair and park it in front of the monitor? The clerical person suggested I get the pink lady to help. Let the pink lady monitor the monitor…some of the other patients cued me in instead. At the end of the day, most people are exceptionally kind.

Which brings me back around to those stupid mistakes. I guess I need to practice what I preach and accept this is all part of having a degenerative eye disease. Having people in waiting rooms accept my limitations is reasonably easy. They have known me for 30 seconds. What about people who have known me for 30 years?

I ask to have things double checked. People don’t believe I am serious. After all, I “seldom” make mistakes. How many gaffs and screw-ups do they need before they believe me? How long before people understand I am asking for help because I need help!?!?

So, life goes on. It is all a learning curve. Old habits die harder than new. It really does not make sense to expect people to “get it” on the first or second try. I expect as I lose more sight, I will be teaching this “lesson” over and over. It seems to be just the way it gets.

Written March 25th, 2019

Next: IS THE WAITING OVER?

Like Sorting at Hogwarts

Back in the retinologist’s office. How delightful. I seem to have done pretty well on all of the tests except one. I am back here for a re-take. Hope they grade on a curve!

Not sure what happened. I really thought I was doing great. OK, so I often think I am doing great, but all the signals I got were positive. I was even told I was most likely in. Now I am not so sure.

I had no idea this was all so involved! I was here for nearly four hours the last time I was here. I had all sorts of eye tests and even a few physical ones such as a blood test and a blood pressure test. It was rather grueling, especially since we worked through lunch.

This time I am supposed to be here for less than an hour. Just the same, I brought a drink. I am not used to going for four hours without any fluid intake.

I am supposed to come back in a week. I guess that I am coming back in a week. I guess that depends upon whether or not I pass this test today.

Anyway, the next time is supposed to be something like four hours. Think I will pack a lunch.

The next time I am supposed to be “randomized”. Basically that means I will be sorted and assigned to an experimental group. Sort of like sorting at Hogwarts, for you Harry Potter fans. Just minus the talking hat. Gee, maybe I will get into Gryffindor!

They are running two experimental groups and a control group. The one group is monthly injections of the medicine. The control group is their pretending to give the shot and the second experimental condition involves altering the shot with medicine and the “pretend” shot. That mean I have a 66% chance of getting the medicine at least every other month.

Not that I believe I could influence the growth of my lesions just by believing I am getting medicine, but I will not be told which group I am in for just that reason. What people believe can influence the dangedest things, including physical things. It is called the placebo effect.

Three days later…

Well, I am still not sure if I am in, but I do know what happened to the one test. It was technical difficulty, a machine glitch. Nice to know it was not me.

I am supposed to get word by the end of the week. That would be nice. However, I am not holding my breath.

If I have learned anything in these last few weeks, it is to expect the process to be more complicated than it initially seems like it should be. There are secondary, dependent variables being assessed, for example. There is also a big, huge bureaucracy behind the scenes calling the shots.

Anyway, should be interesting. Now all I have to do is get in…and stay in for three, long years.

Written April 23rd,2019

Next: Finally a Lab Rat

Traveling Blind Again

As I write this I am waiting to board a plane in Shannon, Ireland airport. The adventure is almost over again.

Yes, you might say I have been “traveling blind” one more time. This time we circumnavigated the beautiful island of Ireland.

Some people may feel I am brave. Some people may feel I am insane. I just feel I have a lot of life left and I would like to enjoy it as long as I can.

My husband did all of the driving. I was not much help. There was no way I was able to read signs. We made do. I had printed directions from the Internet before we left. I had the GPS turned on. My husband prefers paper maps. I cannot read paper maps quickly or without magnification. He made do.

Could I see the attractions? Pretty much. The Cliffs of Moher and the Giant’s Causeway. were more or less hard to miss. They make use of the concept of size magnification. When something takes up your entire field of vision, it definitely extends beyond your scotoma. Same for the beautiful, green fields we would pass. I actually saw plenty of those, too.

The problems I had were with the smaller things. The Book of Kells was not as exciting as I expected. I could not see the detail. However, I did enjoy the gift shop so all was not lost.

And if you are a bibliophile such as I am, the Old Library at Trinity was amazing. It really did not matter I am no longer able to easily read what the books contain. It was a pilgrimage and that was a truly holy place.

Believe it or not, I was not following my husband and hanging on for dear life much at all. He is not much for exploring on foot – bad back – but I am. I went on “walk about” most of the places we visited. I was on my own in the Killarney National Park, the part that looks like a city park, that is. I walked along the wall, turned left and walked two bridges along the creek. I took off in Galway, trusty tourist map in hand. Hug the shore. Follow the canal. Stop and ask for directions often. This may not have been the off the beaten track sort of exploring I would have liked to have done but it was not too shabby.

I can honestly say I did not meet a nasty or unhelpful Irishman during our entire trip. I had one woman volunteer to zip my new jacket. Thanks again, Mom! People would identify my coins for me and take what they needed for payment. Although I could be wrong, I would lay odds none of those people took a penny more than he should have. And if I asked for help once, I asked for help half a dozen times a day. People would point out the toilets or read a menu to me “no bother”.  All I had to do was ask.

So Ireland was a success. Will I be as successful next vacation? No way to know that. But for me, for now, traveling blind worked out quite well.

Written April 11th, 2019

Next: Like Sorting at Hogwarts

Visually Impaired Old Lady Here!

In the past few days I have decided I am damned if I do and damned if I don’t. If I present myself as visually impaired, that is visually impaired to the point that people really believe I am legally blind, I get the sympathy. I get the limitations. In short I get treated as if I am different.

Maybe even the “other”. How can I possibly be competent if I am visually impaired? You can’t do that! Let me help you!

If I go about my usual business and act as if there is no problem, I run the chance of offending people. Apparently there are people who see me every week. They think I am sighted…and snobby!

Case in point. I go to hip hop (cardio-dance exercise) weekly. I am in the front and a LOT of people are behind me. I don’t see them.

Last weekend I was at a hip hop benefit with most of those same people there. Several of them spoke to me and I was flippin’ clueless as to who they were. I know my face showed my confusion. Some of them were offended.

When I explain I am visually impaired and really cannot even see all of my hand at arm’s length, I get one of two reactions. Some people act as if I am trying to get out of being “caught” being “rude”. Others are embarrassed. Then I have to reassure them everything really is forgiven and all is well.

Sometimes things work in a slightly different fashion. Because I don’t see faces well…Okay, I stare a little too long. Is that who I think it is? Many of the friendly sorts will smile and pause. She is staring at me. Do I know her?

Then ensues this awkward little exchange: do I know you? Do I know you? The way you looked at me, I thought you recognized me. Then I have to explain my apparent interest in them was just my poor eyesight!

I suppose I could use that as a way of meeting some very nice, new people. I have always been friendly, but I have become “friendlier” since I lost my sight. Just ask all those strangers in cars I wave at when walking the dogs. I wave at everybody! There has to be at least ONE person in that line of traffic I know.

Then there are the people who “should” know I am visually impaired and have forgotten. I don’t mean momentary slip. I mean forgotten. I asked one of the front row people from hip hop to help me find the friend who had brought me. She glanced around and said “don’t see her. I don’t think she is here.” End of exchange. Really?!? Do I remind her that person was how I got there? Visually impaired old lady here! Remember? I could use a little help. Then we both feel bad. I wandered off and looked on my own.

Bringing up another point: crowds are fun. Not! Sometimes I feel like a lost child. “If you are missing a 65-year old visually impaired woman please report to the entrance. Our security personnel are taking good care of her until you get there.” Geez. I hope they have ice cream.

So am I going to stop going? Nope. I will bumble through until I am no longer able to bumble. Visually impairment is a reality for many of us and we are part of the community, too. Somehow it all works out…I hope that ice cream security has is chocolate.

Written March 5th, 2019

Next: GOOFING UP

I Don’t Miss Driving…

Recently there has been snow to clear in the driveway. My husband will be out there still shoveling when it is just about time to go.

“Here are the keys. Start the car and turn on the defroster.” I jump in the driver’s seat, turn the key and start the engine.

I don’t miss driving…until I do.

I have had this crazy impulse to adjust the seat, throw the car in gear and take off. My muscle memory screams the steps of driving out to me and I long to follow them just like I did for 46 years.

I don’t miss driving …until I do

I know I cannot be on the roads. Every day my vision arranges for me to have a little “surprise”. There are things there I simply did not see. My driving is a very bad idea and…

I don’t miss driving…until I do.

There are some parking lots nearby. They are deserted after hours. Maybe we could go over there some evening and I can “play cars”. But my husband does not think that would be a good idea. I might run into something. I know I should not be behind the wheel. I would be liable. That’s OK…

I don’t miss driving…until I do.

There is a multi-venue music festival next week. The act we want to see is performing ten miles away, ten miles closer to my friend’s home. Coming after me and taking me home would be an extra 40 miles for her. The event has shuttle bus service to try to keep some of the drunks off the road. If I take the shuttle bus I can get there and “only” be about 90 minutes early. But that’s OK because…

I don’t miss driving…until I do.

There is a conference in Center City Philadelphia I am thinking about attending in the fall. I miss the city, any city. While I love small town living, I also yearn for the excitement and variety of city life. I dislike buses but I could get a bus for about $60 round trip. Because of the schedule, I would have to go a day early, leave a day late. That would be about another $400 for the hotel. Did I mention…?

I don’t miss driving…until I do.

Is my life without driving HORRIBLE? In all honesty, no. I have my husband, the van system, friends. If I keep an open and accepting mind and stay creative, I can get to a good percentage of the things I want to get to. It was just the rush of déjà vu when I got behind the wheel. That is what got me. Because, after all…

I don’t miss driving…until I do.

Written February 23rd, 2019

Next: Visually Impaired Old Lady Here!

Feeling Grateful!

Good morning! I am feeling grateful this week. I guess that means this is a gratitude page. Gratitude is a good way to help weather the storms of life. We teach it in therapy. It is also a bedrock piece of every religion I know anything about. Gratitude is good stuff.

First of all, a shout out to Cracker Barrel restaurants. We ate at one of their locations yesterday. .When we came up to the hostess stand, my husband noted a sign saying large print and Braille menus were available.

Now, this is not a perfect world. The sign was about six inches by four inches. It was on the front of the podium. In a perfect world, the sign would have been multicolored neon and include audio. In other words, there was no way on God’s little, green acre anyone with visual impairment would see the sign to know the menus were available. But they are trying!

I mention Cracker Barrel by name for two reasons. The first reason is this: I was never going to see that sign. You probably would not, either! However, now you know to ask for the large print menu.

The second reason is this: efforts to accommodate impairments should be acknowledged. That means, if you know of a business that goes the extra mile for the visually impaired, let us know! It will help your fellow VIPs as well as send a message to the business that they “done good”.

And now for the potentially controversial part of the program. Hear me out before you hang me. Ok?

Of everything that could have gone wrong in my life, I am grateful it was age-related macular degeneration. What do you think about that?

Why would I say a “crazy” thing like that? For the first reason, it struck me in my “old age” (not that I am OLD, of course). I have a friend who has a teen with a chronic, fatiguing condition. When I was this teen’s age I had school, activities, friends. No time for those things when all you seem to do is sleep. Would I have wanted that condition? Nope.

Another reason a late in life condition was good? I was already established. I had my education and over 35, career years under my belt. My financial and personal lives were in good shape.  Basically, if you can be prepared to lose your central vision, I was prepared.

I also have a former coworker diagnosed with bone cancer. Yikes. Do I need to actually state the positives of having dry AMD instead of bone cancer? Lethality, pain, constantly going for treatments, financial drain, just to name a few. Dry AMD is not lethal and there is no pain. Since there presently are no treatments, my life does not revolve around doctor’s visits. There is some financial cost, but since most of my “toys” are durable goods, those purchases were one time events and mostly paid by state vision services. If I had the choice between dry AMD and bone cancer, AMD is a shoo in.

And one last thing: my AMD started out atypically. It hit me like a Mack truck, but most of the time, dry AMD is slow, slow, slow. After the initial shock, it has been giving me time to adapt.  I am learning how to deal with central vision loss at a doable pace.

And one more last thing, the more time it takes, the closer we are to treatments and maybe even cures. This is the best time in history to be experiencing a sight loss.

Still ready to hang me?

Written February 19th, 2019

Next: I DON’T MISS DRIVING

“And Now For Something Entirely Different”

[Lin/Linda: The title is from the 1971 film of the same name by the Monty Python Flying Circus.]

Today is my “odds and ends” day. I don’t work Mondays. Part of the reason for that is so I can have time to dedicate to, well, odds and ends.

Today my husband suggested lunch out. I said Chinese. He said the buffet at the strip mall. Decision made.

In the same strip mall is a well-known, national discount clothing store …oh, ok, it is Marshalls. This Marshalls has been in the same location for at least four years. I realized today I had never been in that store.

No real reason why. Certainly nothing against Marshalls. Before my vision loss I was busy. Since my vision loss I have been dependent on others for my transportation. I do things on the drivers’ schedules. I plan my trips. I know where I am going and what I am doing. Side trips not allowed.

I have said this before but it bears repeating: adventures and spontaneity are not big parts of my existence any more. Not that they were before, of course. I plan. Bless us, but can I plan. However, having the added factors of not wanting to inconvenience others and/or not wanting to miss my ride, even these fifty yard little side trips do not occur any more.

Today I went to Marshalls. I bought five things. No, I do not by any stretch of the imagination need clothes but they were cute. They are also a little different from things I generally buy. Deciding to go into the store, I had decided I needed a little different in my life.

It appears a guy named Ben Fletcher has made a career – or at least part of a career – out of telling people to “do something different”. Posting for psychology today.com (2/15/14) Fletcher reported happy people DO things differently than sad people. Happy is as happy does.

Fletcher quotes Martin Seligman, the father of positive psychology as saying, in order to flourish emotionally we need PERMA. Those stand for Positive Emotion, Engagement, Relationship, Meaning and a sense of Accomplishment. Fletcher suggested we need GREAT DREAMS.

Now several of those are things we discuss in DBT. You know, acceptance, meaning, exercise. But I want to focus on the T, trying out. Fletcher defines that as trying new things.

Fletcher quoted the results of some of Seligman’s work from 2005. It appears happiness scores went up when people broke old habits and behaved differently. It did not have to be extremely differently. Just enough to shake things up.

I don’t know about you but I don’t get overly excited about going to work. However, I do get excited about a new psychoeducational program we plan to teach. I don’t get excited about an old song we dance to in hip hop, but I get excited about the “impossible” move he expects us to execute in his newest routine. Same with dog walks. I don’t get excited walking the girls to the top of the hill one more time but finding a new place to walk them makes me feel good.

So what can you do to avoid the old ssdd doldrums? You know, the ones you sunk even deeper into when you lost sight. What can you do different? What can you do to feel better?

Written February 11th, 2019

Next:

Next: FEELING GRATEFUL

Happy Anniversary to Us!

Hi! Happy Anniversary to us! It was February 2016 we started this crazy journey. For those of you who have been around since nearly the beginning, thank you for sticking around and putting up with us! For you who are newcomers, welcome! [Lin/Linda: To read Sue’s very first page, it’s In the Beginning.  At the bottom of the page, there’s a link to In the Beginning: Revisited where you can read about how her life has changed.]

I had a déjà vu experience at the beginning of the week. It was January 31, 2016, when I went skiing and came home to a drastic vision loss. It was January 29, 2019, I went back to the same ski slope, had the same sort of glorious day on the slopes and…came home to the same vision loss I had when I went. That was a bit of a relief! [To read about that day of skiing, it’s The Perfect Storm.]

I cannot tell you I am above engaging in a bit of superstitious thinking about such things. I was relieved when nothing happened.

Anyway. What does my vision look like now ? I have a fuzzy section pretty much in the middle of things. Anything I want to focus on is not all there. I recognize people across a room by body type or other clues. I can see faces well enough to identify them from about two feet.

If I am running the dogs at the dog park, they can disappear into my blind spot at maybe 20 yards or so. That is a guesstimate. I am definitely not able to drive. There were men working on the road the other day. I did not see them until we were maybe 30 yards away. Not enough distance to stop if I had been driving at the same speed.

Reading is done but is greatly curtailed as compared to my pre-AMD rates. I can read a couple of pages of standard font using eccentric viewing. I have a terrible time reading handwriting, especially handwriting of those I do not know. Heck, sometimes I have trouble reading my own handwriting! [To read Sue’s page describing how she uses eccentric viewing, it’s How She Sees What She Sees.]

I am typing this with a standard, 12 point font. I read it back to myself and find typos at a fair, not excellent, level. That is on my iPad. If I am writing reports on the standard laptop I use 28 point font. After the office staff puts it in standard form, I proof it using my CCTV.

I am able to do most of my life skills just fine…or as fine as I ever did. I have never been a housekeeper or a cook. If I don’t want to resort to using my toys, I sometimes have trouble reading directions. I have trouble plugging plugs into outlets and, at the beginning of the cold weather, zipping my jacket can be an event.

In other words, it is not awful. A few toys, a few tricks and a little help from my friends and I am making it. This is three years into being legally blind.

Again, a reminder: I have geographic atrophy. That is “the other” advanced age-related macular degeneration. Even though we dry folks make up something like 80% of the AMD population, we get short shrift.

Why? Well, we do not have the dramatic changes in vision or the severe damage the wet people can have. We also do not have any treatments. If any one knows the term AMD and he finds out I have it, he will almost always ask about “eye shots”. Afraid not, buddy. No treatment. No cure. This girl is dry.

I gotta go, but I refer you to some pages Lin is putting on the FB page. Not everyone gets wet AMD. Most of us actually have dry.

Do I think I will get wet AMD? Nope. None of my doctors think I will either. GA is my way.

Thanks again for being with us!

[By the way, February is also AMD and Low Vision Awareness Month. What are YOU doing to make more people aware of these two important topics?]

Written February 2nd, 2019

Next: READING AND WRITING

Be True to Yourself

As of today I have been out of my office for a week. My office is a toxic waste dump. Literally! Our best guess is someone spilled fuel oil that got into the groundwater and is now in our sump pump well. That is under MY floor, by the way. The lady from the lab has been in to take samples but until someone figures out what it is and what to do, my office reeks of hydrocarbons.

I am borrowing a very nice office. The borrowed office is spacious and neat. My office is small and crowded and full of stuff. I really miss my office. It is my space.

Monday was a great day. My husband drove me to the ski slopes and turned me loose. The sky was bright blue. The sun glistened off the white snow. There was a cold – but not frigid –  breeze blowing. I skied down medium difficulty slopes and I was in heaven. Do they have ski slopes in Heaven? I certainly hope so. The scene I just described is one of my special settings.

Me. Me. Me. My stuff. My places. As Sammy Davis, Jr. sang “I gotta be me”. The thing is, visual impairment developed later in life sometimes makes it hard to be me. Self determination – acting in accordance with one’s own core values – is seen by some as one of the basic psychological needs, but can be difficult when you have limitations.

So, is it really so important to be yourself? The “correct” term for being true to who you are is authenticity and there is evidence authenticity is pretty important. According to Karen Wright writing for Psychology Today (2008), daring to be yourself is correlated with many positives such as vitality, self-esteem and better coping skills. Inauthenticity can be experienced as feelings of emptiness or self- betrayal.

I was once asked what family and friends could best do to help a loved one with visual impairment. My spontaneous answer was people need to help us be who we are. Loss of identity is terrifying and frustrating. I want, I need, to live my values, engage in my activities and be surrounded by like-minded souls. Basic and essential requirements for a satisfying existence.

How to accomplish this? Fortunately I had a wide network of contacts before I became legally blind. My husband also learned a simple adage: happy wife, happy life. That is a corollary to “when mama’s not happy, nobody is happy.” He learned quickly it was easier to deliver me to an activity than listen to me mope around the house all day!

Other suggestions? Elizabeth Hopper writing for healthypsych.com suggested in The Study of Authenticity (February, 2018) that admitting your vulnerabilities is both being authentic and courageous. Most people will applaud your bravery. I have also found those same people are often willing to help.

Second, Hopper suggested mindfulness. Being truly present will allow you to react to a situation as you are and as it is, not as you think it should be.

Her last suggestion is to seek out situations that allow you to be self-aware. What contexts and situations allow you to be yourself? If you are a jeans and t-shirt sort of person you might be better at a blues festival than at the opera. How to get there? See point one.

“This above all: to thine own self be true, And it must follow, as the night the day,
Thou canst not then be false to any man.”- Polonium, Hamlet (Act 1, Scene 3)

Written January 29th, 2019

Next: HAPPY ANNIVERSARY TO US 2019

Worry vs Planning

I am sure it escaped no one’s attention that all my future concerns, all the things I am planning for, are basically positive. A lot of work and potentially overwhelming but positive. I know more than one person silently – or not so silently – asked how I can be focused on positive concerns when – hey, folks! I am losing my central vision! I am legally blind! Why am I not putting my mental and physical efforts on the fact that I am losing my sight? What is wrong with me?!?!

Well, it is like this: I have gotten my finances in order. I have gotten my rides organized. I have my technology in place. I am known to the closest research team who are working on dry AMD. What else do I need to plan? If you can think of anything, let me know, but I think I have my planning needs covered. Anything beyond that is worry.

What is planning and what is worry? Frank Ryan writing for the dummies series says that planning – or problem-solving – leads to a solution. There is an end to it. Come up with a solution and you can stop planning. Worry, on the other hand is repetitive and does not lead to a solution. Worry creates the illusion you are in control. It gives you the incorrect belief you can somehow get in front of the problem and avert disaster. In the end, worry is ineffective in creating positive change. It leads to anxiety and depression.

Planning is active and purposeful. Worry is passive and avoidant. Worry keeps you in emotional mind but planning gets you into wise mind. [Lin/Linda: For those just joining us, “emotional mind” and “wise mind” are concepts from DBT, a psychological therapy that Sue uses in her job as a psychologist, teaches and uses on herself! You can read more about it in this article from Psychology Today and in her past pages – look for the category Cognitive Therapy.]

The unfortunate truth is there is no solution to the problem we have. Dry Age-Related Macular Degeneration is currently a disease with no treatment and no cure. Ryan suggested we accept that which we cannot change.

Frederic Neuman writing for Psychology Today took a slightly different approach. He called worry frustrated planning. He says we worry about what we are not able to control. We search for a plan to control the things we cannot control. When one cannot be found, we worry.

Neuman went on to suggest a two-part strategy for attacking a worry. Basically, it involves turning a worry into a plan! What are the chances this scary thing will happen and what happens if and when it happens?

It is a given that I am going centrally blind. It is happening. What happens next as my vision loss progresses? I am physically fit. I am financially fit. I have technology and human supports. I am on lists for experimental treatments. As I become more impaired, those are the things I will lean on. I have a plan about what I am going to do. Why worry?

So, decide what might go wrong. How are you going to handle that? Gather the resources you need to implement the plan. Feel better!

Written January 20th, 2019

Next: BE TRUE TO YOURSELF

In the Moment

When it rains it pours. There really can be too much of a good thing.

Right now I am pretty much awash in interesting possibilities. My yogini and I are planning a six-week program applying yoga and mindfulness to mental health issues. At the office we are in the beginning stages of negotiating with a county agency to provide psychological evaluations. Lin and I are exploring options that have been presented to us to share our AMD knowledge and writing skills beyond what we do currently . My husband and I head to Ireland in April. Whoa.

In other words I think about the future a lot. I sort of live in the future.

So what are I doing now? I am lying on the bed with a dog stretched over my stomach. I am writing this page and thinking about taking a nap. I am cold and tired after a busy morning and it is time for a break. Time to be in the now and let the future take care of itself.

For many of us, being in the now – being in the moment in DBT speak – is extremely difficult. I know many of you live in the future in a rather negative fashion. We get a lot of “what if” comments. What if I go blind and can’t do x, y or z? What if they take my license? The world is full of what ifs that have not happened yet and may never happen. Yet we allow these thoughts to destroy perfectly acceptable nows because we worry and fret.

I have preached mindfulness here and at the office and have been told it is “impossible! I can’t do that!” dozens of times. I beg to differ.

In yoga – yes, again – there is a thing called a Drishti. A Drishti is a focus point you can use for balance. If I am doing a balance pose I have learned to find a stable spot in front of me and stare at it. With my vision I often use the little red light on the sound system speaker. THAT I can see!

Of course, balance challenged as I am, my Drishti often becomes a drifty, but that is neither here nor there. Having a point of focus helps maintain balance.

As it is on the mat, so it is off the mat. Having a point of focus in life helps to maintain balance as well. This can happen at many levels.
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At the simplest level is something like focusing on petting the dog. Or the cat if you must. If you get a little drifty and start worrying and fretting, bring your attention back and try again. Focus on the soft, warm fur and just keep petting with attention, not automatically.

At a deeper level, think about everything you do, and do it with both intention and attention. Perform old tasks with the same focus you used when you were still learning. And be cognizant of your goals. What are you trying to do? Rinse the sink? Don’t just slosh some water around! Think of whether or not you are getting it clean. Focus. What is your purpose in this action?

So that is that…and yes, I know there is a difference between what I am planning for in the future and what you are worrying about. Planning versus worrying? By George, I believe I just set up a segue to my next page!

Catch you later!

Written January 19th, 2019

Next: Worry vs Planning

The Time to Prepare is Now!

Recently we had someone ask what to expect when you are expecting…vision loss. (Sorry. Couldn’t resist!) Although I do not have children, I would imagine there are parallels between the two forms of expecting. They can tell you what might happen. They can tell you what typically happens. They cannot tell you what is going to happen. That awaits to be seen.

The truth is, few of us are normal, statistically speaking. I was told my vision loss was going to be a very slow process. Yeah, right. I “lost” my second eye seemingly overnight. I was told rapid progression like that only happens in the very old. I was 62. So much for statistics!

We are all on very individualized journeys. No one person can say her disease will progress in the exact, same way as the next person. That does not, however, mean no one has ever walked that particular section of path before. Someone in the AMD community has been where you are now. Native guides are available.

The person who wrote was just starting the journey. The expectation of something terrible happening – and not knowing when – is very anxiety producing. I am going to take a liberty and assume the writer was feeling that anxiety and worrying when she asked for guidance.

First of all I would suggest you be mindful of your life just as it is.

We cannot rescue the future by worrying about it but that worry can destroy the present. Always remember to focus on what is good in your life. You have sight now. Enjoy it now. Don’t let your AMD rob you of any more than absolutely necessary.

That said, now is the time to prepare.

Do you have a good retinologist you trust? No? Find one. Do you want to get all sorts of “freebies” in technology and services? Don’t quit your job just yet. The agency I got my “toys” from has a mandate to help people stay in the job market. Those who are not working receive a fraction of the funding I received.

Working or not, I would suggest you start contributing to a “war chest” as soon as possible.

Disability is expensive! Even if you get services there will be things that do not get reimbursed. If you don’t get services, things are much worse.

Check local resources. The day is coming you will not be able to drive. How do you get places? That was my big one but there are others.

Get used to asking for help and accepting it graciously.

Don’t be afraid to tell people you are visually impaired. Admitting weakness is a sign of strength. People like to help, but be careful not to give the “honor” of helping to one or two people. Spread the wealth.

Look for opportunities to participate in the helping cycle as well.

What goes around truly does come around. Just because you are visually impaired does not mean you can’t be of benefit to others. People still need what you have to offer.

Those are the thoughts that came off the top of my head. Comments? Anyone have any other thoughts for the “new kid”? Hope we helped!

Written January 7th, 2019

Next: IN THE MOMENT

Why Read My Pages? My Answer

Hi! I have an assignment! I knew if I made a nuisance of myself, I would get one! Lin asked me to sell myself. Why would anyone want to read my pages?

The short answer to why anyone would want to read my pages is this: I am one of you, and I am doing well. Not 100%, but well. If someone has suggestions on how to make the journey easier, is it not wise to at least listen to what she has to say?

For the past three years, with the help of Lin and a few others, I have been slashing my way through the jungle of vision loss. Where did I start? A slightly less crass and heartless version of “You have dry age related Macular Degeneration. You will lose your sight. There is no treatment. There is no cure. Co-pay, please.” Yikes! I believe many of you started there as well.

While it sounded hopeless, it was not. We went to work. Our metaphoric machetes flashed. We found there are agencies to help, technologies to make life easier and new treatments coming out at an ever increasing rate. These things are all in my pages. [Lin/Linda: Just look for the option above “Sue’s Journal Pages” and you’ll find them!]

I was able to draw from my background in psychology and as a long-time yoga student. Since I actually teach the fine arts of emotional balance and endurance in the face of hardship, it seemed only logical to practice them. And if I am practicing them and they are working, should I not share them? Those are all in my pages, too. [You can read about the fine arts she refers to starting on her page Teacher, Teach Thyself.]

Is it all super, high quality stuff? Lord, no! I chat. I ramble. Did I mention I get bored? But Lin has made a compilation of the stuff that was actually helpful. You can start there. [You can start with the pages Sue’s Best Pages and Musings.]

She has also made indices for all of my pages. It is easy to search by topic. There are almost always multiple pages on a topic. If your question is not answered then, please ask. [On all of our pages, there’s a search option and ways to find pages by categories and tags.]

While we advertise this as a two-woman show, Lin does all the heavy lifting. I am pretty much the crash test dummy. I bumble through all of the pitfalls of vision loss (I break my CCTV. My pups eat my glasses, etc.) Then I write about how I got out of the mess. Otherwise, Lin runs the show. [Wish we had an artist: I see a cartoon of Sue as a crash test dummy!]

And what a show it is! There are now approximately 2300 people in the Facebook group. Lin does all of the moderating and most of the research. I don’t know how much work that is and, honey, I don’t want to know! But if you can find a quick answer to your question in my pages, could you do it, please? (I probably just got yelled at for writing that, but could you do it anyway?) [::grin:: I’ve said it before, I’ll say it again: I rarely yell. OK, I do sometimes but not for this!]

That is pretty much why you should read my pages…oh, and I thrive on attention! 😉

Bye!

Written January 6th, 2019

Go back to Sue on Assignment – Special Topics

I’m Bored – Again!

Hi, there! Again, I have not been given an assignment but I AM writing for a very good reason: I am bored! Nothing I should do is appealing. So I am going to write about…whatever. Send me an assignment if you don’t want this to continue happening. [Lin/Linda: yes, PLEASE give her something to do. She’s not happy if she’s bored, and “if she’s not happy, …” Do you know the rest of this phrase? ::grin::]

First of all, I understand we have had a large number of new Facebook group members. Although I am not one of your number, welcome! I think you will find we are a “country” without strict borders. Nearly all are welcome.

We do keep a dedication to the scientific method of inquiry. That means we like to have information that has been researched and proven to have, if not a definite answer to our communal problem, at least a flicker they are on the right road. In other words, if your great aunt heard that burning pocket lint in the microwave and huffing the smoke is a cure, we don’t want to hear about it. If that same process is being written up in a scientific journal, let us know!

We are also – as of this instant – nonprofit. Very nonprofit. If we are not making money on this project, NOBODY is making money. Therefore we do not take advertising, either straightforward or covert. People who have blatantly tried to sell things on these pages have been asked to leave.

If we can get you a hot discount on something we have used ourselves, we will do so. Occasionally you will see a page about a particular brand of merchandise. It s because one of us has been able to get a good deal.

That is pretty much it. Beyond basic civility, two rules: research-based and no advertising. Simple.

From what I understand – remember I am telling you my version of the “rules”, and I am not even ON FB! The girl can have attitude! – Lin has asked some people to watch the professional and lay media and report back. Want a job? I suspect she could use volunteers. [Absolutely LOVE volunteers!]

Leaving me something like 165-160 – words to share some info. I try to keep these pages to about 500 words. I cannot say for you, but my reading speed is significantly slower than it was. I don’t do well with dense prose. I assume you have the same problem.

News? Healio is reporting there may be a new anti-VEGF “kid” in town. Klondike Sciences recently finished a phase 1 trial on a compound called KSI-301. I am thinking the 301 means the 301st attempt. Maybe? In that case they are nothing if not persistent!

Be that as it may, the results were promising enough to do what will probably be a phase 2a study. That is another safety and tolerability study with more subjects. It is still early in the game for KSI-301 but it might prove to be of value.

Running out on my word count, so allow me to again say welcome! If you have a topic you would like researched, please let us know. As you can see, I get in trouble when I have nothing to do! [She does!]

Please ask! As a value we also have member empowerment. You remember Scholastic Rock? We learn because “Knowledge is Power!” Let us empower one another.

Bye!

Written January 4th, 2019

Next: THE TIME TO PREPARE IS NOW

Happy New Year 2019!

2019. Ready or not, it is here.

Not to make anyone feel old, but 2019 will be the 50th anniversary of Woodstock. (And October, 2020, Janis Joplin will have been dead 50 years. I still hear her on the radio almost weekly). 2019 is also the 50th anniversary of the first moon landing. How many of you could have predicted those things at the start of 1969?

Prognostication is a tricky business. Just ask meteorologists. (Which brings up another subject: does anyone else find 60 degree weather at Christmas to be scary? Lin/Linda: not if you live where it’s usually 60 degrees or higher at Christmas! ::grin::) However, with help – a lot of help! – from BrightFocus Foundation website (October, 2018), I will try to predict what we with Age-Related Macular Degeneration might have to look forward to in this new year.

Looking at the wet side of things first, now that they have proven treatments for neovascular, Age-Related Macular Degeneration, it is time to expand, refine and improve. New angiogenesis inhibitors – in other words, drugs that will retard the growth of extra blood vessels – are either on the market or will be coming soon. Some of the ones already on the market are Eyelea, Lucentis, Macugen, and Avastin.

In development are new, longer lasting anti-VEGF compounds. These things include Abicipar and Brolucizumab. Several of the ones currently on the market are also coming out in longer lasting formulas.

And let us not forget the new delivery systems in development. We reported on several different medication reservoirs that will allow patients to go two or three months without having to go in for a fill-up. Down the road, combination therapies, such as filling reservoirs with long acting medications, may allow people to go for shots every six to eight months if not longer.

Moving to the dry side of the street, things are starting to move on several fronts. My personal favorite is regenerative medicine, aka stem cell replacement/regrowth. We have spoken of the groundbreaking work being done with “the patch”. While I found nothing published about this since the spring, I cannot believe the research is not going on fast and furious. There are also studies being done in retinal pigment epithelial replacement by other companies. A search for Age-Related Macular Degeneration + stem cells yielded 34 hits on clinicaltrials.gov. Many of these are phase 1 studies. At least a few of them should progress to the next level.

Since there is a fair amount of evidence AMD has a lot to do with the function of the immune system, there are continuing efforts to intervene in the complement cascade. While lampalizumab fell short in phase 3 trials, APL-2 is entering phase 3 trials and looks promising. This medication is reported to intervene higher in the cascade process and is hoped to effect a wider range of patients.

And I haven’t even touched upon gene therapy or statin treatments or some of the most recent research in mitochondrial metabolism and AMD! All of these lines of study are showing some progress and may lead to finding a treatment and possibly even a cure.

Which study will break to the front of the pack? I have no clue. But one thing I do know is there will be progress made.

So back to Neil Armstrong from the Sea of Tranquility, 1969 “It is a great honor and privilege for us to be here representing not only the United States but men of peace of all nations, and with interest and the curiosity and with the vision for the future…”

May we, of all nations, patients and researchers alike, with interest, curiosity, and vision, continue to support one another in our quest for a cure for our shared nemesis, vision loss.

Happy 2019!

Written December 28th, 2018

Next: A MINOR EPIPHANY

Sue on Assignment: It’s Not Your Fault!

Hey! How are ya? Like I said, I got sort of intrigued by the Just World fallacy. I figured I would read a bit more. Knowledge is power.

It turns out, according to Wiki, this fallacy has been around pretty much forever with philosophers in 180 CE arguing against it. In the 1960s Melvin Lerner started to study it in social psychology. He was curious how brutal regimes maintain popular support. The Just World fallacy helps these regimes because people feel when other people suffered they deserve to suffer. After all, in a Just World why would good people be punished? Thus, if you can make a group suffer, others will look down on them because they deserve what they got. Yikes.

Lerner did propose belief in a Just World is important for our well-being. It allows us to have some faith in the future. However, what happens when you are the one who is experiencing the suffering? Not only do other people tend to blame you…a la the Just World fallacy…but you blame yourself, too!!

This is why the Psychology Today author suggested ditching the Just World concept. It is also why DBT teaches two of the lessons it does.

The first one is the nonjudgmental stance. Pointing the finger and blaming is ineffective. It does not get the job done. What it does do is produce shame and guilt.

The second lesson is “everything has a cause but it is not necessarily you!” When I teach that concept I get out the list of risk factors for AMD. Above 55 years of age. Female. White. High blood pressure. Family history of AMD. Sun exposure. A diet lacking in some nutrients. I have the whole lot of those. Yes, I missed blue eyes, smoking lack of activity and obesity, but hey, that is 7 out of 11!

It is not a question of why me, but one of why NOT me?

And did you notice most of the ones I hit are things I could do nothing about? I am a 65-year-old, white female who had a father with AMD. So, shoot me. How is this my fault? It’s not. When all is said and done, life is not fair. There is much that is not contingent upon our behaviors. You did not cause your AMD You are not bad.

So that is the Just World fallacy. Recognizing the world is not fair and just and, indeed, bad things happen to good people may not do much to end your coping fatigue but then again, it could do quite a bit. Are you the type who is afraid you are somehow responsible for your vision loss? Do you spend hours and days trying to decide what you did to deserve this? Knowing the Just World assumption is a fallacy can get you away from beating yourself up. It can remove the burden of guilt. You did not do this. Life is not fair. You are off the hook for this one! Feel better now?

Written November 30th, 2018

Next: Sue on Assignment: Exhausted by Life?

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Sue on Assignment: Independence

Back again and this time I was “invited” to be my irritatingly optimistic self!  Well, maybe not that far, but Lin said there is a lot of understandable trepidation out there and wants me to speak from nearly three years past “legally blind.”

Yes, I am legally blind and, to paraphrase Mark Twain, the reports of my disability are greatly exaggerated. The past three days I have taken three exercise classes, walked the dogs, did all of the laundry, did dishes, made a pot roast (it was yummy, but I take no credit for that. I am at best a basic cook.) and did the vacuuming. I also wrote two psychological reports and several therapy notes and watched about three hours of TV on my iPad.

What could I not do? Drive, see faces at more than two feet and read without assistive technology or my nose on the page. Oh, and open the pickle jar.

Within certain parameters, I have independence, whatever that is.

What is it? The Oxford Dictionary says independence is the state of being independent. (Do you ever wonder about passive-aggressive tendencies in lexicographers?) Independent is the state of being free from outside control, not depending upon others for one’s livelihood and capable of thinking for oneself.  There is also “not depending upon something else for strength or effectiveness.”

I have my own funds. To the chagrin of many around me, I am definitely capable of thinking on my own. Am I free from outside controls? No, I doubt anyone can really say that. Living in society requires we be subject to outside controls. That leaves having my own strength and effectiveness and being able to do for myself. There is a qualified check in the positive column there.

Through the grace of God, great people, fantastic technology and general cussedness on my part, it is going to be a very long time before anyone is hauling me off to a care home.

I am capable of just about everything I need to do and I have support for the rest.

Transportation?  I have the transit company, a near constant frustration but it generally gets the job done.  I have people, some of whom  I never thought would help,  going out of their ways to take me places. I have become a community project!

And no, I don’t think of myself as a huge burden any more (just a little one). Why? Because people want to help and it makes them feel good.

Reading is accomplished with magnification and audio recordings. If you are legally blind, audiobooks can be free.

Seeing faces is a problem. I am starting to get people trained. And again they can be so sweet. I spontaneously gave a casual acquaintance a hug yesterday. She sought me out across the room and was within inches of me so I could see her. People try so hard! Or at least they try if they see you trying.

Somewhere I read people with sight loss are more likely to become depressed if they do not learn to use available technology and if they have additional disabilities. It would appear the lesson is if you use your resources and avoid the debilitating influences you can avoid, you can maintain your independence. It might not look exactly like it did before, but things will be pretty close. You can get there, you can read and you can see close and/or magnified faces. You are on your own with the pickle jar. I can NEVER open those!

Written October 29th, 2018

Go back to the list of “On Assignment” pages

 

 

Sue on Assignment: How to Conduct an Experiment for Yourself

Lin sent me a copy of the WebRN-Macular-Degeneration News “article” (read advertisement) for Saffron 20/20. I did not know whether to laugh or to scream.

Oh, they were very careful. Nowhere in there did they say “cure”. Nowhere did they say “proven”. They did not even get a toe across the line and use the word “treatment”. All they did was ask why we should not listen to “regular people” just like me and you. Very clever.

I enjoy seeing clever manipulation. The art of the con is time-honored in America and Great Britain and probably a couple of thousand other places. P.T. Barnum opened a museum that was so popular people would come and stay all day. There was no room for any more paying customers.

Barnum solved the problem by putting up a sign saying something like “This way to the amazing egress!” It was only when they were standing on the sidewalk outside the building that they figured out egress is another word for exit! People just followed along.

The word shill is thought to come from the British word shillaber. A shill is a plant. He is the “lame” guy at the medicine show who ends up dancing the jig. He amazes people into buying the snake oil potion.

In other words, never trust testimonials. You just might end up going to see the egress!

That said, I use turmeric every day. Someone told me it would help with my rotator cuff tendonitis and I decided it couldn’t hurt and it just might help. I also started using a muscle rub and tying my arm to my side when I slept. The better not to sleep with it above my head, my dear. Something worked. I have no clue which change it was, but it worked.

Remember how I parrot my father and say do as I say, not as I do? This is another instance of that. I have gone about this turmeric thing totally WRONG. The turmeric people may have me buying something worthless because a yoga acquaintance said it works.

Although I trust the girl who told me about turmeric, she may have sent me to see the egress.

What should I have done? How to Properly Self-Experiment with Supplement, Herbs and Functional Foods is an article outlining how it is done.

First of all, the author suggests you do your research. Is there evidence this stuff may work? In my case, yes, turmeric is a known anti-inflammatory. But after that, I went off the rails.

I didn’t change one thing at a time. I changed three! Wrong! I never researched dosage. Two in the morning and two in the evening seemed right. I also never kept track of my progress. No pre- or post-testing. I failed scientific method 101.

Testimonials, anecdotal evidence, are not “bad”, but they are not the complete truth either. At best, they are not much more than a hint of what might be true. At worst, they are a purposeful con.

If you want – and it will not cost you much in time, money, and perhaps even more importantly, in misplaced faith – go ahead and try things “real people” endorse. But do it wisely. Follow the guidelines in the article, not the guy who tells you the egress is amazing.

Written September 30th, 2018

Next: More Sue on Assignment coming soon!

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Sue on Assignment – Special Topics

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her.  I’ve also gotten requests from readers.  If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Mitochondria – Part 1 (2 pages)

Photobiomodulation

Why Read My Pages? My Answer

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Linda on Assignment

Me and My Cocoons – 2 pages

Electronic Glasses for Low Vision – SeeBOOST

Headworn Low Vision Glasses and Goggles – 2 pages

 

More to come!

Have an idea for a page for Sue? Let me know at light2sight5153@gmail.com

Taking Some Time Off

This is the new normal. I ride transportation. I set up my portable CCTV. Fire up my computer with ZoomText and I go to work.

New clients get a mini-course in vision loss. “This is my CCTV. It is nothing more than a magnifier….I do not see faces. If I come into the waiting area and look confused, I cannot identify you. Tell me you are here.”

At the end of the day, I get a ride home. If I have a class, I get more rides. “My” people are incredible. Friends who give me regular rides have now started finding their own substitutes! I am cared for.

Bottom line here is this: the angst is gone. I have settled into my new normal. It is pretty much like the old normal in many ways. One of those ways? It is boring.

Because it has become the same old, same old, I have less to write about. Or should I say I have less of substance to write about. I am also no longer servicing those who are supposed to be my target audience.

Could I have imagined coming out the other side (or at least sort of. This ride is not over yet) and having this all become humdrum when I first lost my vision? Most probably not. I needed someone to understand where I was then. Being told it was not so bad was…shall we say irritating?

Which brings me to the point of this missive. At this time in my disease, things are ridiculously stable. Thank you, God! Thank you! Thank you! I am losing visual functioning at an “average” rate and that is either very slowly, slowly enough I can keep adapting easily or a combination. For now, I am pretty much plateaued. No angst and no new skills to learn. I am hoping this state stays forever…or at least until there is a cure and I can stop dealing with this mess.

The downside of things being stable, of course, is boring, chatty posts. Not relevant to where most of you are at all.

What I am proposing is a hiatus on regular posts. That may be two weeks, two months or two days! I really like to write! Lin will give me “assignments” on occasion. We’ll be revisiting early pages with updates.

Why don’t you give me assignments, too? Some of you have said you envy my still having enough vision to be able to do research. Take advantage of my having enough vision while I still have it. What would you like me to look at and pick apart?

Of course, many of you know I cannot shut up for long periods of time so I am practically guaranteed to pop up from time to time just because. I plan on being particularly active when (not if. I try to always be positive even though this quest is not going well right now) I get into a clinical trial….or if I have a significant loss in vision. Bite my tongue!

So, the question is: anything special you want me to write about? If not, I will try to take some time off.

I also have a request: who among you – especially those not far along this road – would like to write a few pages about his/her challenges and successes? Any takers? There have to be some frustrated authors among you. This is your chance.

Lin/Linda: this is the first of the “revisited” series: In the Beginning – Revisited.

Written September 9th, 2018

Next: SALVATION: VISION REHABILITATION REVISITED – 2018

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“Wrap Up” Blindness in our Lifetime!

Money! Money, money, money, money…MONEY! (O’Jays- 1973). Healio reported the University of California at San Diego has been given a $50 million dollar grant to found a research center specializing in ophthalmological research. The areas focused on will be glaucoma blindness and retinal degeneration. They are hoping the new center will speed the pace of discovery and innovation. The philanthropist was Andrew Viterbi.

Also in Healio, it was announced Wills Eye has received a $5 million grant to establish the Vickie and Jack Farber Research Center at the hospital. This $5 million from the Farbers comes on the heels of a previous $2 million gift. It also follows up a large grant for the establishment of the Vickie and Jack Farber Institute for Neuroscience at Thomas Jefferson University. The target of future research is to be neurological and eye diseases.

And want to know something crazy? Jack Farber’s corporation has roots in this area, North Central Pennsylvania! If you have ever bought ribbon from Berwick Offray (world’s largest manufacturer of decorative ribbons and bows according to Wiki) or seasonal decorations from Paper Magic, you have contributed to these philanthropic gifts. Cool.

Apparently, the take-home message here is keep wrapping those gifts…lots of ribbons! Let’s “wrap up” blindness in our lifetimes! (Ouch!)

Unfortunately, I am not a multimillionaire, so I guess I have to make my contributions to the cause smaller…a lot smaller. Like prattling along on this page, for example.

Saturday I went whitewater rafting for the first time since I lost my central vision. Now whitewater rafting is not really high on the lists of a lot of people, but I love being on the water and this was one of the things I wanted to do to get back to “me.”

I found a local group of people young enough to be my grandchildren, (if I had any) and I went along with them. Everything went swimmingly – no pun intended and no, I did not fall in. The welcome I got was great. They even suggested I come along caving in December…uh, no, thanks.

Going with them was a tad unorthodox, but sometimes you simply have to do what works. Effectively, that is.

You want to know my biggest challenge all day? Engaging the zipper on my life jacket! It made me realize jacket and coat weather is right around the corner for us here in the northern hemisphere. And I am woefully unprepared.

I looked online for some great wisdom about relearning how to engage zippers after sight loss and I did not find much. The advice they give is the same advice you gave your preschoolers: practice, practice, practice.

So, today’s suggestion is to check your winter coats and see if they have buttons or zippers. You might be a bit better off with buttons (maybe. I misbuttoned a blouse the other day). If you have zippers, now is the time to practice. Asking strangers to help dress you can be a bit humiliating….it was a good thing the girl fitting life jackets was very nice.?

Written September 5th, 2018

Next: Red Hair?

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Red Hair?

My father not only had dry age-related macular degeneration. He also had Parkinson’s Disease and the associated cognitive disorder, Lewy Body Dementia.

I never gave a great deal of thought to an association between the two conditions, AMD and Parkinson’s, but it appears other people have. A post in clinicaltrials.gov states they are looking for people with both Parkinson’s and AMD to study – and I quote – “Prevalence of Age-Related Macular Degeneration in Parkinson’s Patients and Assessment of the Role of L-DOPA ( AMD PARK).”

After that, we sort of wade into the deep end of the pool. The brief summary states several studies have shown Parkinson’s patients treated with L-DOPA develop AMD later than untreated patients. A WebMD page from November 12, 2015, reported there was a negative correlation (something increases and then something else decreases) between taking L-DOPA for Parkinson’s and development of AMD. The study did not assume a cause-effect relationship or conclude AMD patients should take L-DOPA.

In the body, L-DOPA becomes dopamine, a neurotransmitter. Dopamine has a myriad of functions in the body including motivation and reward, motor control and photoreceptors functioning.

So far so good. However, the bottom of the pool drops off on me back in the clinicaltrials.gov summary. The summary “explains” L-DOPA is an “endogenous ligand of the GPR43 receptor…located on the RPE’s cell apical pole….It appears L-DOPA, by stimulating this receptor, decreases the cell’s exosome release.”

Of course, it does! Yeah. Good grief!

Ok. Endogenous means it comes from inside. A ligand is…heard that before, hold on…is a molecule that binds to another molecule. Apical means related to the apex and exosome means an extracellular vesicle. GPR43 has something to do with inflammatory signals.

In other words, we are back to the complement immune system. L-DOPA might keep RPEs from signaling for help and accidentally calling in friendly fire on themselves. Maybe. Not only is this me, your ever loyal social scientist, trying to interpret this but they are still doing the research. Stay tuned for further developments before you quote me on these points. This could all be way off the money.

Back to the WebMD article, I discovered I was waaayyyy ahead of the pack in developing my GA. The average age for the development of AMD according to this article was 71. (Gee, nearly ten years ahead of most of the rest of the folks. Here I am. Overachiever. Not!) The average age for those on L-DOPA was 79. (Things that make you say “Hmmmmm…” No wonder they are studying it.)

And another fact just for human interest: both Parkinson’s and AMD are more prevalent in those with red hair. There does seem to be some weird link here. All the scarier because I had natural, red highlights all the years I was growing up. Another hmmmmmm…but we won’t dwell on that.

So, there you have it. There appears to be some sort of connection among Parkinson’s, AMD and, yes, red hair. We are not sure what it is yet, but they are working on it. Maybe L-DOPA will be the new treatment. Stay tuned.

Written September 7, 2018

Next: Taking Some Time Off

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No Train for Christmas

Hi! Server is down again. This does not bode well. I have two hours I could be working, but I guess I bother you folks again.

Like I said, Lin gives me stuff. This one she gave me with the warning I need to be good. Generally, that is advice that goes in and one ear and out the other. I am a brutally honest sort. One of my mother’s favorite questions for me growing up was “Can’t you lie?” I assume you get the point. [Lin/Linda: Sue is paraphrasing what I said. What I said to her didn’t include a ‘warning’.  Whatever advice I DID give her obviously went in one ear and out the other. ::grin::]

The last article Lin gave me was the results of a poll taken by general ophthalmologists, retinal specialists, and patients with AMD. The poll asked for the highest priorities in retinal research. Number 1 was “the development of choroidal neovascularization.”  Number 3 was “retinal hemorrhaging.” Both of these are, of course, related to wet AMD. The second one had to do with studying geographic atrophy, i.e. advanced dry AMD.  Number 4 was “gains in vision.” Number 5 was “slowing vision loss”, and 6 was “serious ocular events.”

Now all of these are fine and noble areas of endeavor. I don’t have a problem with any of them in theory. So, why did Lin suggest I try to behave myself and not stir up trouble? Emotionally I have some problems with it.

Imagine a kid at Christmas. Her brother gets a train. She gets told there was nothing available for her they could buy. She gets nothing.  The next year her brother gets a bigger and better train. It will run smoother and go faster. She gets nothing. Her parents tell her they thought there might have been something for her, but it didn’t work out. Maybe next year. Next year comes and brother gets all sorts of accessories plus an even better train. Nothing for our girl. Nothing available.

I am getting tired of being that girl. I go to the research and there are nine, different, exciting opportunities for advancements in Wet AMD research. The tenth one may be for dry AMD, but it is often something that has since “died” in clinical trials.  No joy again.

Very selfishly, I feel we need to be first on the list. I appreciate you wet folks go blind more severely and much faster. I appreciate eye shots can be pretty horrible. The thought of having someone put a needle in my eye might make me want to throw up.

On the other hand, I would also like you wet people to try to appreciate what it is like to come to the table time and time again (or to the Christmas tree. Sorry for mixing metaphors) and come up empty. Think of the frustration and the demoralization of religiously looking, reporting great news for other people …but finding nothing for you.

Eye shots are horrible, but if they could come up with an eye shot that would stop the progression of this disease, I would be fighting to be at the front of the line. At least it is something. Right now we have nothing. [Just to be clear, the injections for wet AMD do NOT stop the progression of AMD. They work to protect the vision a person has. Sometimes, that only works as long as one is having injections. Sometimes, sadly, they don’t work at all or for long. In either case, there is no way of knowing ahead of time – it’s an injection-to-injection battle.]

So, yes, I get snarky, and I can be offensive. Some people don’t like my snide comments about how the wet people have another, miraculous advance coming down the pipeline and we have…nothing. Please just remember how blessed you are and wish your dry brethren a little bit more than nothing under the tree…and spare me a charitable thought when I look with jealousy on what you have. It is not easy out here.

August 28th, 2018

Next: “Wrap Up” Blindness in our Lifetime!

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Life is Not Fair

I am capable of throwing one, fine pity party. Nothing is going my way. Everyone hates me, and I will never be able to cope with this! [Lin/Linda: We’ll have a little sing along about this at the end of the page. ::grin::]

There are some days I would be just as happy to retire to my bed with a half a gallon of chocolate ice cream and a spoon -don’t forget the spoon! – as well as a full box of tissue – you don’t want to get your ice cream soggy! I just want to eat myself into oblivion and cry myself to sleep. To face this all the next day…

Dry AMD is a long campaign involving loss after loss. I have been living with – surviving, tolerating, whatever – this condition for over two-and-a-half years now and it can be damn discouraging. What do you do when you are out of ice cream and have to face reality? How do we get back to an even keel?

First of all, let’s look at your physical state. Are you sleeping well? Eating well? Exercising? Taking care of illness? We all know things do not go as well when we are physically out of sorts. If you want to tolerate your vision loss better, take your allergy medication. Walk the stairs. Eat your vegetables! A fit and healthy you is a more tolerant you.

As much as we are hoping and praying and looking every day for a treatment, the name of the game right now is tolerance. How do I tolerate today? …and today? …and today? Sometimes it comes down to how do I tolerate this moment. Depends on the day.

We have talked about distress tolerance skills in other posts. They should be available through a simple search of the website. Quickly here, I want to mention avoiding a black and white attitude in your interpretation of situations. Is it really true that nothing ever goes your way and everyone hates you? Is it true you will never be able to cope? Absolutely are rare in life. If you have even once been successful in coping, that means there is a chance it can happen again. Don’t be so quick to dismiss yourself.

Interpretations are extremely important. The lens we look through upon the world is critical. Try to look at the bright side. Maybe today is one day closer to a substantive treatment, not one more day that must be endured on the way to the grave. It is all in the spin, doctor. Reinterpret and reframe again and again.

And last of all for this page, stop wasting energy fighting reality. No, it is not fair. Somewhere along the line, someone told you life is not fair. You should believe him. Bad things happen to good people and this time it was your turn. Why? Dunno. Back to Alfred Lord Tennyson, “Ours is not to reason why. Ours is but to do and die.” Make the best of a bad situation. Put your energy towards things that can be affected, not towards things that cannot.

Maybe the meaning in your suffering will be a classic poem. Could be worse.

[Lin/Linda: As promised: sing along with the video “Nobody Likes Me, Everybody Hates Me, Think I’ll Go Eat Worms!”]

Written August 20th, 2018

Next: No Train for Christmas

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