Category: Sue’s Musings

This Journey Together

I have had a few days of frustrating myself. I have not been ‘all there’ in Zumba or yoga. Not sure if it is the stress of puppy parenthood, the change of seasons, my bum arm, or the fact that I am 64. Probably a combination. Whatever the cause, I have not been up to par.

Then, I have noticed lapses in visual attention. Details are getting by me. Of course, we all know what that is. Whether I know the reason or not, it is irritating. I am frustrated with myself. I should know better. I should do better. I should do more.

Since I am back to teaching emotional regulation in DBT, I have been back to doing a little research. (I don’t like to do the same presentation every time since several of our students are ‘repeat customers’.) It appears DBT and a little thing called self-compassion therapy have some overlaps.

Self-compassion, or lack thereof, has to do with how people respond to themselves during a struggle or challenging time. According to Wikipedia, my ever reliable (I hope) source, self-compassion is positively correlated with life satisfaction, wisdom and emotional resilience among other things. Self-compassion has been found to be negatively correlated with rumination while rumination has been found to be positively correlated with anxiety, depression and eating disorders. (Aldao et al, 2010). In other words, cutting yourself a break means you won’t be as depressed, anxious or have as many really maladaptive eating habits.

Neff, a big name in self-compassion, postulated there are three parts to be considered. These are as follows: self-kindness, common humanity and mindfulness (of course!). Looking at the explanations in Wikipedia, I discovered self-compassion involves observing the situation in a non-judgmental way and accepting it is what it is. Observe, accept, non-judgmentally. Hmmmm….where have I heard that before? ?

It appears rather than be frustrated and criticize myself, I might accept as my body and eyesight deteriorate I am not going to be able to do what I once could. Rather than berate myself I might commiserate, encourage and be a friend to myself. If you had a friend who gets on your case as much as you get on your own case, would you keep her around? Doubt it.

Common humanity goes back to a guy name Siddhartha Gautama. Also known as the Buddha, the enlightened one. The Buddha declared that life is pain. This is the common condition of man. In other words, you are not alone. If misery loves company, you have a lot of it!

Of course, the Buddha also said pain becomes suffering only when we wish to escape it (very loose interpretation there). That takes us back to observe and accept. (See the Four Noble Truths if you want to understand it more thoroughly.)

Mindfulness! I get a little crazy with all the hype and would get crazier if it did not work so well. Mindfulness is derived from Vipassana, which means to see things as they truly are. It is a nonjudgmental observation of what is. Seeing what is truly there, suggests acceptance, warts and all.

So we have come full circle again. Self compassion: slightly different packaging of some wonderful, tried and true ideas. What it boils down to is this: see yourself for what you are, accept yourself, be your own best friend and remember, we are on this journey together.

Namaste (just felt the need to add that!)

written December 10th, 2017 Continue reading “This Journey Together”

Puppy Parenthood

Greetings from Puppyland. It might be optimistic to say things are ‘good’ but they are definitely better. The puppygirls are closing in on 20 pounds each. You can practically sit and watch them grow. They have discovered they can use the doggie door and most daytime pee pees and poops are independently taken outside. Nights? Better but definitely a bit more lax than when the sun is up.

Of course now that they are bigger, they can destroy bigger things. A step stool just went flying across the room! Really?

We have started to leash train. Or I should say I have started to leash train. Note to self: wear sensible shoes with treads. I had them on the road coming down a little hill and fell…twice. My knee looks like it should belong to a nine-year old. Boo boo! The combination of two, tugging puppies, the incline and smooth bottom shoes did me in.

Of course, ‘poop’ remains the word of the hour, day, week… Right down to finding the decapitated head of a toilet brush on the bed last evening. Really? Yuck!!!! That was the third toilet brush destroyed. Or was it the fourth?

And speaking of poop, still waiting for the poop test results. Do you want to know what they actually wrote in their instruction manual? Too bad. I am telling you anyway. It says…and I quote: “your stool sample may look different from the stool sample pictured.” Really? Is it my imagination or do people think we are idiots?

Continuing right along here, puppy parenthood at 64 and with a vision problem is supposed to be my topic. Not all that bad. Puppy parenthood at 64 with a vision problem, that is. But remember I have a high tolerance for chaos and dogs are at the top of my list of favorite things. If you want to throw away shoes if you step in – here we go again – poop or cannot stand to have a few things ‘accidentally’ gnawed, puppy parenthood may not be for you.

I am still not noticing anything about my vision loss that is making having puppies really onerous. If I had to do it again, I might buy pups that contrasted with the carpet a bit better. They do get stepped on. With housebreaking progressing, there are fewer dark-colored – here we go again! – poops on the dark rug for me to step in.

The problems I am seeing would, again, be more physical. I am still doing my share of picking the pups up and relocating them. If you cannot repeatedly lift 20 pounds…buy a smaller dog. I met this wonderful ‘little monster’ last evening. She was a Morkie (Maltese/Yorkie mix) and weighed less than five pounds fully grown. That pup might be a wise alternative to two, lunatic chocolate labs.

So, basically we are good and making progress. The problems are still not vision related. Minus stepping on them due to poor contrast, of course.

In other news, $178 later I got my CCTV back. I have a new charger and my tray again locks. The techs wrote a note suggesting I refrain from picking it up by the tray. Probably has something to do with my pop rivet problem. For future reference for you.

I go to see Regillo Thursday. Even if he has nothing for me now, I want to be a presence.

Let you know. Bye!

Written December 8th, 2017 Continue reading “Puppy Parenthood”

I Tried My Best

I was raised to be responsible. I am responsible. I go to work and the job gets done. I have done the job between bouts of vomiting, with fevers and with migraines.

I am responsible but I am not crazy.

OK. Maybe the word is not crazy. However, I am definitely not one for not using good judgment or not looking at the big picture. Now, this is especially true when it comes to my vision.

I was at a professional gathering on Friday. One person there asked me about the circumstances of my sight loss. This person had an eye bleed that had started on Tuesday! That is three, count them, three! days. I advised an immediate trip to an emergency room. I told this person his sight could be very much at risk but was told in turn he had other, important obligations to attend to and he would, essentially, get around to it later.

I tried one more time and was again rebuffed. Are we truly our brother’s keeper? I wanted to call 911 and get this person to the hospital. That would not have been appreciated, but would he have appreciated my efforts if I had saved his sight? If he gets to a doctor sometime next week and gets told he has done irreparable damage to his vision will he appreciate I tried? Will he wish he had listened?

I assume our readers have more common sense, but since assuming can make an ‘ass of u and me’, I am going to spell it out. Never, as in NEVER, ignore an eye bleed. Mary Lowth wrote about vitreous hemorrhages for Patient. She stated vitreous hemorrhages are one of the most common causes of sudden, painless vision loss. Vision can be totally obscured by blood in the vitreous. Even if nothing serious is wrong that caused the bleed to begin with, you can be left with floaters. Not to mention blood is cleared from the vitreous at the rate of only 1% a day. That is over three months of impaired vision!

There is a whole list of things that can be horribly wrong to cause bleeding in the eye. Because I have dry AMD and have been warned about the potential of developing wet AMD, a bleed due to neovascularization was the first thing I thought about. There is also diabetic retinopathy and posterior vitreous detachment. PVD can be associated with a tear in the retina. None of these are problems to take lightly. [Lin/Linda: if you ever see what looks like a curtain drawing over your visual field or part of your visual field is obstructed, that IS an emergency which requires IMMEDIATE attention because it can mean that you do have a retinal tear. Most PVDs are accompanied by lots of floaters & sometimes flashes of light that are more noticeable at night (that’s the vitreous tugging at the retina. If in doubt, call your doctor.]

Lowth stated “retinal detachment must be excluded urgently”. In other words, should you have a bleed, run, don’t walk to the doctor and make sure your retina is still where it is supposed to be. Waiting three days is not an option.

Some of you are also sadly aware that bleeding can cause scarring and even more significant vision loss. Bleeds should be diagnosed and controlled as quickly as possible.

So, there you have it, some people believe they have more important things to do. They believe satisfying responsibilities is more important than taking care of their eye health. These people are wrong. If you even think you have an eye bleed, get to your doctor.

As for this person yesterday, I tried my best. Matthew 10:14 [“And if anyone will not receive you or listen to your words, shake off the dust from your feet when you leave that house or town.”]

written December 3rd, 2017 Continue reading “I Tried My Best”

Reflections on 2017

Tomorrow is the first of December. Another year is winding down. Lin asked if I wanted to write a bit about 2017. What did the year bring for me? What did it mean?  What has happened in my journey?

Excellent questions. I am sitting here waiting for my ride – do I ever do anything but wait for a ride?- and trying to formulate some profound answers for them.

First of all, while I do a lot more waiting for rides than I ever cared to do, I do do other things. Normal things like work, shop, exercise and travel. I  just do some of those things differently and, in some cases, with a little more difficulty.

If 2016 was the year of change and challenge and adaptation, 2017 has become the year of The New Normal.

I have a routine. My routine is not much different from my pre-sight-loss routine. Initially the planning requirements were overwhelming. (When things break down, the planning can be overwhelming! ) However, most times now things just flow. I know where I need/want to be at a given time and I have good, reliable people who will get me there. Week after week we get the job done together.

I continue to be dependent upon my totally awesome community. I am blessed to be surrounded by kind and caring people who make the effort to look out for me. What I have lost in independence I have gained in relationships and connections. People whom I never would have sought out as friends have become such simply because they happened to be going my way (Bing Crosby, 1944). These people are some of my most faithful drivers.

Although I often feel I am receiving much more than I deserve and more than I could ever repay, I believe my impairment has put me in a better position to help others. I am not only talking the talk now, I am walking the walk. Being visually impaired has given me street cred. Suddenly I am seen as knowing what I am talking about!  I have been able to pay forward some of the help that I have received. Helping others is a heady feelings.

What about my fervor for a cure? It is still there. I have every intention of getting into a stem cell study. Call me tomorrow and I will be there. That said, I am not living and breathing the quest for a treatment or cure every minute of every day. My desire to see well again has developed a more quiet urgency. I am learning patience. Things will come and they will come in their own, good time. My impatience is not going to make them come any faster.

My job now is to live as good a life as I can with what I have and, yes, as hokey as it may sound, be a good example of living with an impairment.

So, that is what 2017 has meant to me. That is also my wish for you for 2018.

  • I wish you all of the dullness and lack of adventure a smooth-running routine can provide.
  • I wish you helpful and caring people and I wish you the strength to get out there and show people how it is done, vision loss or no. You can do it and you can make a difference.

Peace. Love. Charity. Hope.

November 30th, 2017 Continue reading “Reflections on 2017”

AMD 101 Lecture

I got to go to Walmart today. Not a big thing but not happening as much as it used to. My husband cannot see to drive in the dark and since it is dark by 4:30 now, he cannot take me after I get home from work. Usually it is a lot easier just to give him a list and he can go during the day. Acceptance and adaptation do tend to be watchwords for the visually impaired life. Having my proverbial wings clipped also cuts down on the frivolous purchases!

Speaking of transportation – one of the eternal thorns in my side – I wanted to once again push self-advocacy. With my ride home from school facing a lot of possible medical nonsense, I asked once more about the transportation people actually getting me home from school. Their previous hours were such I would have had to miss an hour of work daily to ride home with them. It now appears things have been amended and they can actually take me home two hours past the old time. Yahoo! Remember nobody ever tells you when these things change.

You have to ask and keep asking. You also have to make sure they know there is a need. Demand can affect supply. Basic fundamentals of economic thanks to Smith and Marshall.

And economics gets me back to Walmart where they are playing the devil out of Christmas music and hawking everything you never really needed. It is the holidays!

We got together with some extended family for Thanksgiving. I usually arrange things so I can talk to my nephews on these occasions. However, this time I got ambushed. Okay, I actually think the ‘kids’ were the real target but I got caught in the crossfire.

This person inquired about my ‘condition’ and then launched right into the “you don’t look/act blind” routine. I know other people get this because there are a couple of dozen posts about it online. Annoying people with their annoying questions.

Not sure exactly how to handle this situation. I don’t have prosthetic eyeballs and even if I did, throwing my eye on the table in a chain restaurant would probably get me thrown out (although in some incidences that ploy has worked for people). Also, as much as this person and I have a ‘history’ and I could have blasted her, my husband would not have approved. That leaves out the caustic zinger. He has to deal with his family more than I do.

Another thing that aggravated me was she was asking the most basic of questions. Everyone else at the table knew the answers. If she had been interested before, she would have known the answers. Although she thinks it has been a year since I started to lose my sight, it has been nearly two and a half years since my first eye ‘went’. I think that is plenty of time.

But barring the bad relationship, how much do I want to subject my nephews to the AMD 101 lecture? They have heard it. They ask sparse but pertinent questions and the conversation moves on. I have tried to integrate AMD into my life. Not the other way around. I have lots of dimensions.  I have other things to talk about.

Just asking. Anyone?

written November 27th, 2017 Continue reading “AMD 101 Lecture”

The Puppy Zone

Lull in the action here. The puppygirls had a rip and tear session, a potty break and are now asleep. Not, really NOT, guaranteeing how long this is going to last.

Getting odds and ends done. Two, wild pups are very demanding on time. You also need the agility to get to them before you have an ‘accident’ (even though she did it on purpose!) on the carpet or an electrocuted dog.

Since I cannot see what they have, I am probably up and down more than I was 14 years ago with my last puppies. I could probably contain them better and limit what they can get, but I have a theory that dogs who are restrained more tend to run when they are not restrained. Besides, I like to have them where I am.Thus, they keep me hopping. They have found things I don’t remember seeing in years! Into everything.

My husband has more physical issues than I have and they are wearing him down. It is harder for him to respond as he should and he probably doesn’t physically intervene consistently. I housebreak by grabbing the pup and rushing her outside. No sense in just yelling.

If I could not sweep in like some sort of avenging angel and run for the door carrying a 5 pound or so pup, I would have to think twice about having one. At least one that is not penned a good part of the day.

So far, after a full week of puppy parenthood – with twins, thank you very much – I cannot say there have been too many vision-related concerns. No, I don’t always know what they have and I am frequently retrieving things from their mouths. Sometimes one or the other will disappear into my blind spot. Then I have to scan with my peripheral vision. Very often movement will give them away. The pups are chocolate labs and the house came with a burgundy-colored carpet. In low light I have already fallen over one of them. Low contrast.

Also, the poopy ‘presents’ that sometimes appear are brown on a burgundy background. That can make for a rude discovery. We are working on limiting those. Just the same, not seeing something like that because of poor contrast is a concern.

Oh well, when I was a kid and stepped in dog poop – in bare feet with it squishing between my toes – my father would tell me not to worry; it would make me grow! In our neighborhood both the dogs and the kids were free range.

Like I said, the physical limitations have been more a factor than my vision. I am able to run, stoop, snatch and grab, not to mention carry. With his back, my husband has limits in those areas. Lost a puppy? Last night I was on my hands and knees crawling around the furniture. At this size, they crawl in small spaces.

Crate? Yeah, I could, but what would I do for cross-training?

So far, those are the observations from the puppy zone. I am sure there will be more. The adventure is just beginning.

Oh, and actually talking about vision, I wanted to revisit the subject of contrast and low vision, specifically colored acetate sheets. One of my clients who happens to have a vision issue was very pleased with what a yellow overlay was able to do for her reading. Sometimes it really is the little stuff that is the most helpful. Check it out.

Written November 25th, 2017 Continue reading “The Puppy Zone”

Overwhelmed!

Still being pecked to death by ducks. Tilting at windmills. Use your own analogy. Or is that a metaphor? I completed the registration for my license renewal only to be told I did not have my child abuse credits. I thought I got those months ago. Of course there was no phone number to call to get a real person to ask about that. I eventually found out my child abuse education has to be approved and the one I took was not.

I was told that information was posted…somewhere. Quite frankly, I did not see it. I did not look. I don’t look for the fine print or the stuff posted off by itself. Often a quick overview is plenty for me. It is easier that way.

Low information processing in an information rich world. Is it possible AMD has become more of a crisis simply because of the Information Age we live in?

I am thinking I need to start asking about such things. What is the catch here? Anyone actually read the fine print? What hoops do we have to jump through this time?

I started to obsess on getting that online course in. No license means no job. Then my friend who gives me a ride home from school revealed she needs some medical treatments. She will be missing time from work. If she is not in school, I will not have a ride home. (OK. So I am self-centered. I am worried about her, too, but hers is not a problem I could or would have to solve. Push away those things that cannot be dealt with now. Work on the ones you can do something about.)

Add to that notes to be written, reports to be done, a house that is ready to walk as my mother used to say (“look at this place! It’s a mess! It’s ready to walk!”) and…puppies! and I am a bit overwhelmed.

That means I have adopted my ‘triage’ system. I sat down and did the three-hour training. It was seriously bothering me and it was something I could do something about. It was also due in 10 days. After that was down, I got home and, between bouts of puppy wrangling, started on a few household chores. Having a clean bathroom and a scrubbed kitchen floor does help to make one feel more in charge (even though she is not!)

Of course we know who is truly in charge: two little puppy princesses. Things were a little rougher the last three days because Daddy was manning the fort alone while Mommy was at work. He had them outside a lot, in self defense, supervising as they terrorized the front yard. That meant they were asleep by 5 and up at all hours of the night. That was my job. They have also learned to ascend the stairs and are working on descending. In other words: vigilance and baby gates have become our watch words.

My husband fed them. A little bit later, my kitchen towel made its appearance in the living room. To quote my husband: a prize with every meal!

More in a bit. Gotta get changed. I am not thinking a kitty motif blanket sleeper, striped slippers and ski pants is such a great look for the day. A bit more later.

written November 23rd, 2017 Continue reading “Overwhelmed!”

New Puppies!

Well, things have not lightened up any. I have been trying to get back into regular exercise in spite of a ‘bum wing’. Hauling bags and doing exercise classes on the ship did not help the rotator cuff tendonitis. So much for promising to be ‘good’. (Never believe me if I say that.)

I am supposed to renew my professional license. I tried for an hour or more Friday evening. When they tell you the help desk is overwhelmed with requests, it is NOT you. Just the same, I cannot help thinking just one more try will get me in. Stubborn to the death. I always believe there is something I can do. Perverse? Maybe.

It keeps me in there pitching until I am ready to scream and tear throats out. Morbid thought. Excellent way to get a stress headache for sure.

I start to teach a week this Wednesday. I had told my colleague I had time to help her with preparations on Friday. I did. It was just times she had appointments. Never bothered to compare schedules. Oops. I was a little upset because she was peeved about it.

Before I go on, I wanted to stress something Lin said she stressed to the FB group recently: visually impaired people have all sorts of normal, mundane problems. The things that have been driving me insane this week have mostly been the same things that drive sighted people crazy. In those ways, life is pretty, freaking normal.

And now – just to complicate matters – I am a new puppy mother! Yesterday we brought two, eight-week old, female chocolate labs home. For the past, 20 hours I have been dealing with ‘Destructo Dog’ x 2! The legs of my antique, oak library table have become chew toys. Electric cords are seen as tuggy toys and every piece of paper or plastic in the house is in danger of being shredded.

Know what? These are the same problems I had with the previous 7 dogs I have owned. My yellow lab chewed through a cord and my golden retriever chewed a piece off the hearth. This is puppies.

Have I had any visually impaired specific issues with the puppygirls? One is milk chocolate and one is dark chocolate. In low light I am not capable of telling them apart. Not sure that is a big problem. I have nearly tripped over them but my husband has had the same problem. That is not all vision related.

I will keep you apprised on how things are going. The first day, problems have not related to my vision loss but they might in the future.

Problems today have been pretty typical of anyone who has not had pups in 14 years. Did I go out at 4:30 this morning in 40 degree Fahrenheit weather with no shoes? Yep. Potty emergency. I have already stepped barefoot into the snow during housebreaking. Prefer not to, but I forgot to put a pair of slippers next to the door.

This too shall pass…and it will be all worth it.  Stay tuned for puppy updates!

Written November 19th, 2017 Continue reading “New Puppies!”

Play the Cards We Are Dealt

Greetings from the lunatic fringe. Home six days now and it is nutz.

Much of what is happening is, well, partially normal. After being in airports and airplanes across the eastern seaboard I screwed up my run of no contagious illnesses. I spent Tuesday afternoon throwing up….at school. I had a case of the flu. Some sort of 24 hour bug I can only attribute to being stuck in a tin can with a couple of hundred others and recycled air.

Fortunately, my office is right across from a bathroom so it wasn’t too much of a disaster. The nurse and others were very helpful and I did have offers of rides home. Did not take any. There was work to the done and after the first time I threw up, I felt better. Really. Besides, I wasn’t going to get anything done by going home. Might as well work between bouts of nausea. The interims lasted a couple of hours each. Also, my benefactor would lose an hour out of her work day, too.

Is it fair to inconvenience folks when they do you a kindness? How much stress do you want to create for others? Inquiring minds.

Tons of work to be done. I would have been more out of sorts if I had not attempted to tackle some of it. Sick at work is sometimes better than utterly overwhelmed.

Some of the ‘busy work’ I hate had actually been done for me while I was on vacation. Anyone work for a bureaucracy, you understand about useless, pointless work.

Sometimes I appreciate people doing me kindnesses and sometimes I object. It is good to know I am valued enough they will put themselves out for me. However, I also don’t expect people to do my work. I don’t want anyone to think it is necessary just because I am visually impaired. Crazy dilemma. You don’t want to offend people, especially when the next minute you may legitimately need the help. However, you don’t want to slide, either. Or at least I don’t.

I had a client today who is physically impaired. This client is wrestling with some of the same questions. Wanting to be totally independent but not being able to be. I tried to explain to this client that, in my opinion, it is not a matter of success as much as a matter of style.

We each play the cards we are dealt. They may not be a winning hand, but if we play that hand with skill, we can still win in our own way. Just the same: what constitutes skill? I am just full of rhetorical questions tonight.

Back to another question/contradiction/whatever with me: my boss at school held up a note for me to ‘read’. Hell, I could just about see the paper. I grabbed it from her to position on the end of my nose and she was all apologetic. She forgets I am visually impaired and I love it. It tells me my work is still good.

Two days later I am at the gym and stewing. People are racing past me and yelling “Hi, Sue !” Clue who they are? Nope and drove me crazy. Kept grumbling to myself that people need to remember I am visually impaired and IDENTIFY themselves. Same lapse. Two very different reactions. I am hopeless.

And with that, I am signing off. That is just part of the stresses of the week. The stresses of coming back and hitting the ground running. My husband found me amusing last evening because I was actually stumbling after the first day at the office. Zounds. Time for some self-care and I did. Food, bath, bed, a little journaling. Bye.

Written November 17th, 2017 Continue reading “Play the Cards We Are Dealt”

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”

Postcard from the Cruise Part 2

Killing time at Fort Lauderdale airport. Home tomorrow. We have to stay over near the airport because we get back to Pennsylvania after dark tonight. I cannot drive and my husband cannot see to drive after dark. Extra expense but better safe than sorry. A concession we needed to make if we wanted to travel with vision loss.

The trip was good. I got fairly independent on the ship. There were some problems with reading signs but I learned my routes pretty easily. Deck 8 for the stateroom. Deck 15 for the buffet and the pool. Deck 16 for the gym and deck 7 for my daily ‘promenade’. That’s a walk around the ship for the uninitiated.

I saw a man walking with his white cane once. That meant there were at least two people on board with vision worse than mine. I thought about accosting him and asking about his experience but then decided that might be rude.

Food was plentiful and very good. We ate in ‘any time’ dining every meal. I put my nose pretty much on the signs to read what the offerings were. However, if I had to ask for or about something, the responses were immediate. I think I would have had no problems finding someone who would have walked me through the buffet line.

In fact, there were staff who wore vests with the official handicapped logo on them. They generally got the wheelchair bound cruisers off and on the ship. I think I could have probably utilized one of those people as a sighted guide now and again. I did not ask, but handicapped is handicapped; yes?

One of the big problems with anytime dining was my husband would sit down and I would have to spend five minutes or more trying to find him in the crowded dining room. We finally half solved that problem by always going to the same corner of the dining room. Getting the table first and leaving something there to claim it would have probably worked too.

My husband had many fewer problems finding me at the pool. I think the lesson there is let the sighted person be the hunter. You be the ‘huntee’.

Even though I was quite candid about my vision loss, I still had problems with people thinking I did not perhaps ‘care’ enough to recognize them. I developed a friendly relationship with a deck attendant from Serbia. Very sweet young man but he expected me to see him and respond cordially even when he was ‘out of place’. Never quite believed I am visually impaired. After all, I wasn’t running into things; was I?

I did wear my “blind chick with attitude” shirt to work out. I had one comment on it. A woman in Zumba thought it was cute. When I pointed out it was also accurate, she was totally embarrassed. She had looked at the graphics and not the wording. So much for advertising!

Ok. Gotta walk before I grow fast here. Plane coming soon….I hope.

Written November 10th, 2017

Continue reading “Postcard from the Cruise Part 2”

Postcard from the Cruise Part 1

Greetings from the high seas. We stopped in the Bahamas for a beach day yesterday. Today and tomorrow we are sailing for Cartagena, Colombia. Finding some things to do even though I am semi doing the caged animal thing. I have a tendency to pace if I am not kept occupied.

But my inability to sit my sorry self down and relax for extended periods of time is not the main topic of this page. Actually, there are at least two topics for this page. Starting with this one: it may not be fashionable, but I am proud to be an American. How do you like that?

And what brought that about? Simple, I got to watch the United States Coast Guard at work today and those people rocked it. There was a medical emergency onboard. We had to turn around and travel two hours back into Cuban waters to meet the Coast Guard chopper. Maybe a thousand or more stood on the decks and watched the patient be hoisted into the helicopter and whisked away. The Coast Guard came when they were called. They performed their jobs like clockwork. And they are Americans.

Do we know what nationality the patient is? Nope. Doesn’t matter. The United States Coast Guard came. It is their job and they do it well. I am proud of them and proud to be part of the nation they represent.

There. Not said enough. I am proud of what I saw today. They are my countrymen and they ‘done good’!

The other thing I wanted to point out about this incident is this: there are a lot of people who are older and who have disabilities on this cruise. They are being taken care of. Taken care of to the point of spending God knows how much money to travel at top speed to meet the Coast Guard and then turn around and go at top speed to make up the lost time. If you have the time, money and inclination to cruise, don’t let a little vision loss hold you back.

One week later: we have now had a rather large woman taken off the boat by stretcher in Cartagena. The ambulance was meeting her. I also saw a woman being led by a sighted guide. The blind woman was doing a lot better than some of the other people I have seen!

Now is cruising with a vision loss ideal? Absolutely not! I am missing a lot. Yesterday it took me three times as long as everyone else to see the sloth. It took me about twice as long to see the troop of howler monkeys in the tree and I never did see the poisonous frogs. However, because I made my disability known I do have photos. Other people took them for me.

Not much else happening here. I don’t have WiFi so I cannot really do any research. I will send this when we get to the airport in a few days. After that, it will be back to normal.

Written November 3rd, 2017 Continue reading “Postcard from the Cruise Part 1”

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”

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

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”

Some of Yours

Just logged on to check my email and the first thing I found was another phishing attempt. Oh, for crying out loud! These things are coming faster and the ‘phishermen’ are getting bolder.

This one was ‘from’ my email provider. Not only did they want my username AND password but they were also trying for a credit card number. Good grief. Do I look like I just fell off the turnip truck?

The problem is, for every 999 people who have not just fallen off the turnip truck, there is one who has. That is all the scammers need to make a killing.

So, just in case we have a reader who is not ‘scam savvy’, a couple of tips: scammers are often non-English speakers but the messages are in English. Misspelled? Clumsy wording? Be aware. Ask for your password? Run the other way. Soliciting a credit card number from you? Contact customer service and ask them. Do not give a credit card number out to anyone who asks for it. Lastly, check the details on the email. If it come from Sylvester in Syracuse you probably have a scammer.

Anything suspicious can get forwarded to your service provider. I also label anything from that sender as spam so I don’t have to deal with him again.

Just another public service announcement.

Oh! And I just noticed something wild. My service provider lists as ‘tells’ for phishing attempts the following: asking for personal information, mass mailings and details (show details). That spells AMD. How about that? [Lin/Linda: ::groan:: you are REALLY stretching it!!!]

And after all that, I want to talk about pessimism/optimism. Another good grief. I know the shady morals of so many is not necessarily a reason to be upbeat and sunny. My delivery and timing stink. However, if you look at it another way, we are looking out for one another and that is positive. Yes? Yes!

Lin asked me to read Dan Roberts article about how so many of us see a more dismal future than others our age who do not have AMD. The piece says we expect health deterioration and Lord knows how many other bad things just because we have vision loss.

The first thing I thought about was why should vision loss lead to worse health than any other sensory or orthopedic or general health issue? Sounds like the depression talking to me.

Roberts emphasized there being so much reason for optimism with all the tools and medical breakthroughs. I agree with him totally on that. That is part of the reason we continually share news on research and ‘toys’.

However, what I think his real message was was this: the study did not differentiate between those actually getting the information, the training and the support and those who are not. Roberts asks what the differences would be. He also asks – about knowledge and skills training lapses – the question “why not?”.

You see things and ask “Why?” but I dream things and I say “Why not?” – George Bernard Shaw

(And, yes, JFK paraphrased it a bit but he took it from Shaw.)

Part of the reason for this website is to spread knowledge and to spread hope. Every day progress is being made. Every day things are happening to make our lives – as the visually impaired – easier.

Know someone without knowledge? Someone without hope? Give him some of yours. We want to be able to say “Dan, we hear you and we are trying to do our part.”

Written October 29th, 2017 Continue reading “Some of Yours”

Cruisin’

Saturday. I think I am packed except for toiletries. I guess I’m good. Find out once we get on the ship.

I have not done as much research for this trip as I have done for other trips. We planned it fairly quickly. Wanted to get it in before we got a puppy.

I will let you know how it all goes. I just looked up Best Ships for Cruisers with Disabilities. They reviewed the big ones: Royal Caribbean, Celebrity, Disney, Holland America and Princess.

While most cruise lines are pretty good with physical impairments, visual impairment only got about one line of text in each case. Each of them offers Braille on some signs and audio books in the library. Most offer large print menus in the restaurant. In other words, in my not-so-humble opinion, they don’t put themselves out too much. (After all, do they even make elevators without Braille anymore?)

If you have a guide dog, he can also cruise. However, be careful which cruise line you choose. According to Do Cruise Ships Cater to Blindness?, Royal Caribbean will not let your dog off the ship! He has to stay aboard at all ports of call. Holland America has the same rule. Several others allow service animal to disembark as long as they have all their proper papers. Of course, finding out what exactly the proper documentation is your responsibility.

Princess has computers set up with JAWS and Holland America has a similar set-up called Window Eyes. That means you can search the web in their internet cafes and the computers will read it all to you.

Royal Caribbean provided sign language interpretation for the deaf. They also provide orientation tours for the visually impaired. However it appears none of them will provide anything in the way of orientation and mobility for the visually Impaired much beyond that initial guided walk around the ship.

In fact, the “Cater” article outright says some cruise lines strongly suggest, depending upon your level of impairment, you not cruise without a caregiver or, at minimum, a sighted companion. Although I would not want to cruise solo, that can put a definite crimp in some people’s style!

That said, there are ways to travel with disabilities, including visual impairment and blindness, and even if you don’t have a ready travel companion. Organizations like Access-Able and Mind’s Eye Travel come up in searches. While I have never used services from either agency, the owner of Mind’s Eye and at least one of her sighted guides were a year behind me in high school. I can vouch for the women so I am pretty sure I can also vouch for their program and services.

So, no, it may not be as easy as picking up your wallet and passport and going out the door, headed for parts unknown. (Although when I looked up ‘blind travel’ I discovered there are companies that will plan everything right down to choosing your destination. They don’t tell you where you are going until you get there!) However it is possible to travel when you are visually impaired. First leg of my trip is in about six hours.

Written October 29th, 2017

Continue reading “Cruisin’”

Yeah Team!

Back to being ‘fried’ on a Friday. Saw clients and helped my boss and fellow DBT teacher fill in an application for a grant. She needs me to be her “right-hand man” on this and the potential of the project is exciting. Just the same, I keep going back to what will happen if I have another significant vision loss? How can I help? Will I only hinder? Will all this time and money be spent on me only for my vision to fail?

In this case, I am ‘it’. I have the knowledge and I have a certain dedication to the project. There is no other candidate. I have to step up to the plate for her.

Sometimes I get a little nervous that people still have faith in me. They throw me assignments. They elicit my help. There are times I want to say “Excuse me. Visually impaired little old lady here! Don’t trust me with this. I might fail you!” Of course, I really won’t be what fails. It will be my eyes, but the results will be the same.

Intellectually I know nobody is irreplaceable. Intellectually I know we could get a younger colleague to do this and she could be run over by a truck or some such thing. Results would be the same, but it would not feel the same to me. I would not feel like I was the one letting people down.

The other issue here is I am an old war horse. Sound the bugle! I snort and pace and I am ready for battle! I do not want a safe pasture. I enjoy the challenges. Sure! Let’s do it! Damn the torpedoes!

As I said, in this case, I am ‘it’. No one else is prepared to do it. Take it on and try to see it through. I have told my boss I will do it for her as long as I can see. After that she will just have to lead me with my white cane around if she still thinks I can help. I am game if she is.

We live until we die. Or at least I think we should. I am going to go until I can go no longer. Make my contributions where I can. Enjoy. No one knows what tomorrow will bring. Not truly. I may have years. Maybe not. Besides, what the hell am I going to do if I decide I should sit around and wait to go blind? Drive myself crazy? [Lin/Linda: drive ME crazy!] And that doesn’t even considered the effects I would have on other people’s mental health! Not sure my husband deserves that fate.

So, for now, I get to be second in charge. ‘Team leader’. Ha! Scary thought. Wish the team luck. They are going to need it.

Written October 27th, 2017 Continue reading “Yeah Team!”

Limping Along

Wednesday. Morning! I am in the pre-vacation rush. Not quite ready to pack and get my head in vacation mode but trying to put as much at home ‘to bed’ as I can. Last evening I spent two hours working on stuff for school. Even with that and whatever else I can do in downtime, it is going to be a crunch to beat deadlines when I get back.

To top things off my CCTV died yesterday. What a glorious mess that has been! I tried calling everyone I could think of. Blindness and Visual Services have two loaners and they are both out. The district has nothing and the educational resource organization that serves the district has nothing. I even called the local college. Nothing. The local assistive technology store did call me back but by that time I had a line on some help from Eschenbach.

I have to hand it to Eschenbach. They have helped me several times in the past and they are coming through for me now. I have a loaner machine coming along with an authorization for repairs for my machine. I am hoping the repairs will be done for when I have to go back to work in two weeks.

In the meantime, I got a lot of help today. When you cannot see, adding columns of numbers on tests can be a challenge. I asked several people to check my work. Better to be safe than sorry. Did not do too badly but I would not want to try to function that way every day.

Lesson? Nothing new really. I just needed to advocate for myself and keep pushing until I got the help I needed. Somebody often knows somebody who knows somebody who might have an idea about someone else. Consider it a quest!

People care. BVS called today to see how I was coming along. They had been working their contacts for me, too. Just did not have a lot of luck.

I guess that that is another point. Don’t burn bridges. Be appreciative. All those things they taught in Sunday School or your Sunday School Equivalent. People will put forth effort for people they like. Smile!?

I find it a bit distressing, however, that I had to reach out two states away for help. Eschenbach is in Connecticut. I would love to have resources a little closer to home. The guy from the vision store suggested I contact the local blind association. Not sure if the Office on Aging or some other such thing could have been of help. Probably need to inquire. Now that this has happened I feel as if I need a viable disaster plan for when it happens again.

So that was my day. Not an easy day at work but sort of gratifying. My problem is going to be solved. People cared and were trying to help. I would have liked to have laid my hands on a ‘spare’ within the hour, of course, but that was probably unrealistic.

I can limp along for the next few days.

Written October 25th, 2017

Continue reading “Limping Along”

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”

Don’t Believe Everything You Read

Friday evening. I have things I should do. Constructive things like cleaning the bathroom or writIng a report. Or studying the book for the home colon screening test.

Yep. Back to poop. I really need to ‘study’ for that ‘test’. Of course, my husband told me he took it and aced it. All the answers are number two!?

So much for the potty jokes, but I really could not resist sharing that one!

So, yeah. Things I should do but I am not doing them. When I got home I flopped down and watched Hawaii Five O on my iPad. It is great because of the relative distance thing. I can actually see the screen!

Then I checked my email and Lin had sent me an article about how yoga inversions are bad for us with AMD. Alrightee then. Let me move off from there.

After I scanned the article, I went to Google Scholar. I searched about six pages of references for yoga and macular degeneration. I did not find a single description of an article that sounded like it found yoga inversions bad for AMD. Not one. In fact, most of the articles I scanned sounded as if they were touting yoga as a great thing for the visually impaired.

The reason I went to Google Scholar? Because it helps you find the research. Everyone has an opinion but unless he can back it up with facts, don’t believe him! An opinion is no more than that: an opinion. That and $1.25 will get you a diet Pepsi. (I don’t drink coffee and have no clue how much a cup of joe really costs.)

The articles I saw that said don’t do inversions were on the general web and by the same person. He offered no substantiating data. His evidence, if any, appeared to be anecdotal. Anecdotal evidence is great for helping us generate some working hypotheses but to declare it as true, we need experimental proof.

I guess the lesson I am trying to impart is don’t believe everything you read in the papers. There are all sorts of opinions and theories out there. Some of them have a lot of face validity and seem as if they are true. That doesn’t mean they succeed when they are tested.

Once again, we try very hard to back up what we say here with research. If I go off the reservation in my speculations, I will tell you. “I don’t have a clue what I am talking about. Unsubstantiated opinion here!” One should never pass off her opinions as gospel.

Speaking for myself and myself alone, I am not quitting yoga even with inversions. There is no substantive evidence offered for the claims. I love yoga. I have improved strength, flexibility, endurance and even balance (eternally balance challenged; that’s me!) I love the challenges. I love the socialization. And that is that.

And now, I have found another use for my magnifier reader: DIY home surgery! There is a splinter in my foot. Can’t see it naked eye but on 9x it is a tree trunk. Nurse! Tweezers!

Written October 21, 2017 Continue reading “Don’t Believe Everything You Read”

Drink Your Fluids

Hello. Doing the bachelor chick thing this evening. I ate a BIG piece of Boston cream pie and then lounged in a hot tub while watching NCIS on my iPad – strategically held outside the tub, of course. I hate drowning good electronics. (I have already killed three cell phones by drowning…one in diet Pepsi!)

I thought of taking the cake and the tablet and going to curl up in bed but then I thought that might be too decadent.

Hubby is spending the night with his mother. My mother in law does not like to drink. Water, etc. Not alcohol. She does not like to have to walk to the potty. When she gets dehydrated it messes with her system and she ends up in the emergency room half of the night.

Moral of the story: drink your fluids! No one likes to motor around when they cannot see well. It is scary, but dehydration is even scarier.

Never gave it much thought, but apparently the people at Hydration for Health think about it a lot. I found their short article to be very informative. For example, I never realized dehydration is a huge problem in the elderly. Older bodies don’t hold as much fluid as younger ones. We also don’t recognize when we need to drink as well as younger people. Dehydration is one of the top ten diagnoses of hospitalized seniors. Dehydration is associated with cognitive impairment and constipation, not to mention death.

Mommy-in-law does not have a vision impairment but she has a mobility impairment and, as I said, does not like to take herself to the potty. Ergo, she drinks very little. I am thinking some of you are the same. Maneuvering through the house with low vision – and maybe a mobility problem – may seem like more trouble than it is worth. If you don’t drink, you don’t pee. Problem solved? Only if you want to get a heck of a lot more debilitated, it is!

So, I get an evening to play bachelor chick courtesy of the mother-in-law. She got to spend half of last night in the emergency room. My husband gets to sleep on her couch tonight. All because she won’t drink her fluids. Seems sort of silly to me. I hope you guys are playing it smarter and drinking enough. Even if it means a dozen trips a day to the potty!

And since this is supposed to be an AMD blog sort of thing…I heard from my contact at the research facility. Janssen has put phase 2 of their stem cell research on hold. Why? Your guess is as good as ours. Astellas is supposed to move on their stalled, stem cell research in the early Spring. They are going to be recruiting from the subject pool starting with the people with the worst vision. There is the answer to my question of how to get on the A list. I have to go just about truly blind to qualify. No thank you. I can wait to qualify if that is what they want.

That is about it for now. Hang in there and drink your fluids!

written October 19th, 2017 Continue reading “Drink Your Fluids”

Make the Safe Call

Hey. I had a real chock full day planned today and what do I do? Nothing. Pretty much nothing. Bummer.

A friend and I went for a Japanese hibachi meal last evening. About three hours later, my system revolted. I will spare you the details, but it really was a waste of what had seemed like a nice meal. After I was finished ridding myself of dinner, I slept poorly. (Wasn’t food poisoning. I KNOW how that acts. Just got a hold of something my system refused to digest).

Now, my plans for the day had me in town, navigating from one activity to another from morning to mid-afternoon. I would have been on my own. My husband was motorcycle riding with a friend.

Had it been two years ago, I would have tried it. I could have taken myself home when I needed to. Cut the day short. Now I don’t have a car. Now contingency plans like that don’t exist for me.

I thought about it. What would happen if I got sick again? Huddled in a corner somewhere until someone had pity on me? Spend 20 minutes praying I did not vomit in their car? Nothing like that seemed like a good option. They were not good options at all.

So I allowed discretion to be the better part of valor. I turned off the he alarm and went back to bed. Spent the day hanging out at home.

I like to think something like this won’t happen again but I know it will. Without the ‘escape hatch’ having your own transportation can afford, many of the marginal calls that I would have said “go for it!” before will now have to be “no”. That really is limiting. It is depressing. I do not like it at all.

So, the game plan? Keep myself as healthy as possible. Be grateful for everything I am able to get to, everything I am able to do. Beyond that I guess it just comes down to acceptance. I cannot cut it as close as I used to. I cannot make the marginal call any more. Sometimes I need to use a little discretion. Make the safe call. Damn.

written October 15th, 2017 Continue reading “Make the Safe Call”

Maybe They Have Something

Good afternoon! It was a busy morning. My husband had to take the car for service so he dropped me off at the hospital for a shoulder x-ray and routine blood work. My shoulder pain is little better.

You would think I could just continue with up dogs, down dogs, planks, side planks and all those other yoga moves with no negative effects, but nooooo, my shoulder is really sore. It might have something to do with my not being as young as I used to be, but I doubt it.?

Then I walked down to get a haircut and Pizza Hut buffet lunch. Picked up by hubby. Grocery store. This year’s photos to the camera store for display. Home.

I have cleaning to do. I have a report to write. Oh, well. I have an OBLIGATION to our website!

At the end of last year Lin did a page on topical treatment for wet AMD. That means eye drops instead of shots. One of the ones she talked about was Squalamine. At that time Squalamine had failed to satisfy the efficacy standard laid out and the trials had been terminated.

Squalamine had failed to reduce the number of shots needed to keep crazy, blood vessel growth at bay. However, there were some secondary goals that were reached. According to the January 29, 2017 VisionAware, there were positive effects on acuity. This was especially true in people with a specific type of lesion. 31% of the people with ‘classic’ wet AMD lesions gained 11 letters on the chart!

According to healio.com a classic lesion in wet AMD has well-demarcated hyperfluorescence in the early part of the test and progressive leakage later on. It is not to be confused with occult or combined lesions.

Ohl Pharmaceuticals decided in February, 2017 to take the 200 people already enrolled and start in on phase 3 trials. In April Ohl announced it was amending the timelines of the study so there could be results late this year or early 2018. They also amended their goal to be an increase in visual acuity as opposed to a reduction in shots needed.

Now, I am wandering into the area of unsubstantiated speculation here, so don’t take what I say as gospel. OK ? OK. The April 10th press release alluded to the research being funded until early 2018. To quote: “Following the close of financing today we are funded until 2018 including completion of our ongoing clinical trial and data readout by the end of 2017 or early 2018.” Now if that were me and I were getting positive results, I would want to show off those results quickly and improve investments and other funding. If I had squat, I would stall and plead for just a little more time and MONEY.

In other words, I think they have something.

Another reason I think they have something? The press release said they were working with the patients who had “the greatest potential to benefit from Squalamine combined therapy”. In other words, they stacked the deck. (In my opinion, of course.)

Anticipating they rock the phase 3 study AND the FDA gives approval to ‘go live’ in a reasonable amount of time, a combination Squalamine/Lucentis treatment could be available in 2018. Cool. We are on our way.

Written October 9th, 2017 Continue reading “Maybe They Have Something”

Keep Calm and Carry On

I want to get this typed and out because Lin and I both suspect people will not listen to me or Paul McCartney and let the suggestion of atrophic damage beyond the macula be.

How can you not listen to Paul? He was my favorite Beatle when I was a teenager! Remember when the Beatles were on Ed Sullivan? [Lin/Linda: of course I do – I was sitting on the floor in front of the TV loving every second of it.]

What? Pertinence to the topic? Okay. Sigh.

Found an article based on research coming out of Seoul, South Korea. The research looked at peripheral reticular pigmentary degeneration (PRPD). That is lesions on other areas of the retina as opposed to lesions only on the macula.

Primero point: the authors say three or four times this type of degeneration is rare, rare, rare. They had trouble finding enough people to make their study valid.

Point segundo: patients with degeneration of the peripheral retina are significantly older than patients who do not have it. Yes, some of you are up there but most of us don’t have to worry about the truly advanced age factor for some time.

Point three, whatever that is in Spanish [tercero]: the most common, probably contributing factors in these people were factors related to compromised circulation. That was both systemic and ocular circulation. The biggies were found to be retinal artery occlusion, ischemic (low blood flow) optic neuropathy, and a couple of other ischemias. [Click here for more about these conditions that are sometimes called ‘eye strokes’.]

One that sort of scared me was a positive correlation with high blood pressure. However, last week my pressure was 122/78! Admire it now because I cannot tell you the last time it was so beautiful.

Other factors are as follows: stroke, carotid artery stenosis, and yes, AMD.

Now don’t get your panties in a bunch just yet. The theory is, once again, there are common, underlying factors leading to these conditions. AMD does NOT cause PRPE although the same may not be said in reverse. PDPR may promote the development of AMD.

They are looking at a shared genetic risk between AMD and PDPR. There is evidence a complement factor H variant is involved in coding for a propensity for PDPR just as it is thought to code for some (all?) variants of AMD.

Choroidal ischemia is a factor in AMD as well as PDPR.

So, bottom line here: this is a very rare occurrence, especially in younger oldsters. It is related to poor circulation. Circulation tends to get worse as we get older. It is also possibly related to variants in complement factor H.

Can’t change your genes just yet at any rate. Cannot get any younger. That leaves taking care of your circulatory system. Do what you can to improve it.

As an anonymous member of the British Ministry of Information said: “Keep calm and carry on.”

Our journey is not over yet.

written October 8th, 2017 Continue reading “Keep Calm and Carry On”

Accessibility by WAH