Category: Self care

Shedding Some Light

I am trying to balance out my weekend a bit. So far it has been a lot of fun and games. Of course, there is nothing wrong with fun and games…just occasionally I have to remember I am a grown-up!?

Laundry in the machine. Living room swept. Time for a page.

As I said last page, the Facebook group will be discussing coping with “all that bad news”. Now, I was not immune to the sinking feeling that comes with thinking you are going blind.

I spent an afternoon imaging the worst “I’m blind” scenario I could imagine. It was too depressing so I traded that scenario in for a better one. That one suited me better. That one had the aforementioned fun and games.

How did I do it? Stubborn as a Missouri mule and a born optimistic. I had also called for “help!” I had not read the WebMD article Coping with Vision Loss but I ended up doing much of what that article suggested.

For example, Lin and I were both researching in earnest. Each of us is a born student. Have a problem? Research the hell out of it! Things you know something about are a lot less scary than the unknown. I would suspect every one of you is a master of the horror story when it comes to vision loss. Shedding some light on the condition will reduce the horror.

WebMD suggests professional, psychological help. Uh, I am professional, psychological help. And when I was not my own, best therapist, about half of my friends are in the biz. Nothing formal, but, honey, I can talk!

I don’t think I have to tell you to allow yourself to grieve your loss. You are doing that. But remember, grief waxes and wanes and when you are not actively grieving you need to get moving. Use what energy you have to develop coping strategies.

We have talked about ‘toys’ and trainings for low vision. There are all sorts of options available. The WebMD article has a list not that different from what we have talked about. In bigger cities you might be able to get into lend/lease programs so you can try out a few, equipment options. If you need financial help, talk to government or service organizations. We have mentioned program such as state vision services as well as the Lions Club International and Center for Independent Living just to mention three.

That is pretty much what WebMD had to say. I found an article discussing a formal study of those losing their sight. I have to look at it more carefully and I will get back to you. Right now the dryer cycle is finished. Gotta advance the laundry. For now, hope this helped!

Written 2/19/2018 Continue reading “Shedding Some Light”

Making Elmo Proud

Rough day. I will spare you the details except to say I was on a rip and a tear most of the day. I need to get to hip hop and dance my frustrations away. If you have the opportunity, I would recommend it.

Anyway, after I got home from trying one more time to leash train the puppygirls – with one arm that I could swear is now a good inch longer than the other!; I got some ideas about equipment to keep them from pulling today at work; gotta buy it! – I sat down and looked in my email. The new Healio had an article on shared decision making in medicine. Cool.

Now I don’t know about you, but my mother thought ‘Elmo’ – our family doctor – sat on the right hand of God. Don’t get me wrong, I liked him just fine, but there was a limit to my devotion to his Word.

My mother’s devotion to everything our family doctor had to say helped turn me into a very difficult patient. My favorite questions to any doctor are “Why?” and “Explain that to me.”

Okay, so the second one is not a question. Same difference. Bottom line is I am a horrible patient and “because I am the doctor” is never the answer you want to give me.

So you can imagine I was thrilled to see medicine is starting to be reasonable and see things my way!? After 64 years it is about time!

Shared decision making seems to have gotten some traction early this century. It is getting even more popular because it improves patient knowledge, reduces uncertainty and reduces overuse of services.

A National Learning Consortium fact sheet from 2013 listed more benefits of shared decision making in medicine. That article listed how the process allows the patient to learn the pros and cons of any procedure. It allows the patient to take an active part in his care and this leads to better follow through.

Sounds good to me! In fact, even if we did not realize we were promoting the concept of shared decision making, we at Mymacularjournal.com have been preaching patient empowerment since the very beginning. Why? Because I am not a mushroom and if you are following us, you are not one either.

Because these are MY eyes and at the end of the day, for better or worse, I want it to be my decision what happens to them. And third, add your reason here. I suspect you have one…or two.

Patient empowerment. Knowledge is power. Learning about our condition allows us to help our doctors provide better treatments. It allows us to understand the value of treatment and treatment compliance. And…it gives us back a piece of our self-determination and maybe even a bigger piece of our self-respect.

I think that is a good thing. I try to practice it and, you know what? I think Elmo would have been proud.

written Jan. 31st, 2018

Next: Our Own Month

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My Two Cents

Lin/Linda here.

My 2 cents which means ‘my opinion’.

This is my 4th year doing research about macular degeneration (mostly AMD), working with Sue on the website & interacting with members here. It is really frustrating not to be able to say, “take 2 pills and everything will be fine.” After all, we have pills that virtually cure other diseases, right? Or there are lifestyle changes you can make and you won’t need the pills. For example, if you have high blood pressure, you can lose weight, exercise and eat a certain diet, and you won’t need the pills. We can sometimes have blood drawn and are told we don’t have enough of …. so we take more of …. (fill in the blanks; I’m thinking of Vitamin D levels for one).

Unfortunately, we are not yet there with AMD and similar types of macular degeneration and other retinal diseases.

I’m writing this because I’ve had people tell me to be honest but optimistic. It’s hard for me to balance those two sometimes! I’ll first be honest, and then I’ll be optimistic. I hope you know that I care for and respect you. Why else would I be here?

What do we hear?

We are told by others with the disease, by doctors or in articles on the Internet about nutrients that are treatments (AREDS2? Saffron? Turmeric?) or that eating leafy greens (how much, how often?) is a treatment. Some sources even tell us of cures! We search for people like us and ask, “did this help you?” People say, “I ate … and took … but my AMD got worse.” Or “I ate … and took … and my AMD got better.”

How do we know what to believe?

There are things that we know about AMD: it is a disease with many potential causes (we don’t yet know what they are for any individual) and many risk factors and that everyone has a different combination of them (I have a recent post listing all the ones we know about so you can see what yours are). Our genetics – which includes heredity but also other genetic factors – may have the most influence on some people but not all. We can’t control that. Another big risk factor is age which is another thing we can’t control, darn it. ::smile::

What can we control?

Don’t smoke; keep your weight, blood pressure and cholesterol normal; get moderate exercise; eat eye healthy foods especially if your diet has been poor. Some people with AMD can be helped by taking the AREDS/AREDS2 supplements but some cannot. Some can even be harmed by them we now know.

Remember that they are called ‘supplements’ because they are to SUPPLEMENT our diet, not to replace eating well.

Unfortunately, we cannot yet look at a person’s genes alone or blood or diet or use of supplements and say “yep, that’s it!! That’s what caused it for you. Now do this.”

A lifestyle

I hope that you see that dealing with your AMD is very much a self-help process with input from your own research, your doctors, Sue’s pages and this group. What I’m talking about is that you need to develop an overall plan – a lifestyle – for YOU which includes:
– managing your blood pressure, weight, and cholesterol.
– getting moderate exercise.
– eating an eye-healthy diet.
– working on keeping the stress as low as possible, and if you can’t eliminate it, you can learn to deal with it in positive ways.
– taking supplements IF they’ve been proven safe & effective.
– keeping an open mind about using the MANY low vision aids that are available when and if you need them. There are so many more of than in any time in history and more are being developed every day.
– accepting that you may have to learn different ways of doing the things you used to do. We have examples of people who did this and have created ‘new normal’ good lives (Sue is one).

Supplements

We do not discourage talking about supplements and procedures. We are doing it, too. You may think that we are trying to keep you from taking or doing something that will make a difference when we share the results of our research that often says that something hasn’t yet been proven to be safe and effective. Why would we hide helpful information? Sue & I have been volunteering our time for years. I am here every day of the week doing what I can. My life would be easier if I could say “Take this and do this.” ::smile::

If we can’t tell you what to do, we can at least help by using our experience with proper scientific research to keep you from doing something that could harm you.

I’m constantly looking at the news in the field with the expectation that one day I’ll be able to share with you the good news that there is something that really CAN help control and reverse the damage that’s been done. There’s research that is making great strides in both of those aspects of the disease.

Are there reasons to be optimistic?

You bet there is! If you are even just reading the headlines of the posts in our group, you will see reasons to be optimistic. I’m not talking just about ongoing research. I’m talking about posts and pages from people in the group and elsewhere who have the disease and who live good ‘new normal’ lives – even thrive – with vision loss.

What can I do NOW?

1. Keep a positive attitude and know that you are doing the best you can with what you and the experts know currently. We are learning more as time goes on and there is to learn ahead!

2. Work on creating a healthy lifestyle. If you are new to your diagnosis, putting your lifestyle plan together is a critical process that takes time, education, help and support. You may not be ready to start down this path yet. When you are, we are here to help you every step along the way.

3. Think about ways you can adapt your life, your home, your workplace using the many low vision aids available both electronic and non-electronic.

OK, I’m done…for now! ::grin:: Thanks for listening.

Written 2/2/2018. Revised 1/7/2019.

Next: Making Elmo Proud

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Let Us Try

Happy Monday! Martin Luther King Day in the US so there is no school. I forgot and had my ride scheduled so I had to cancel. Oh well….

Home and doing odds and ends. Lin reminded me it was the end of January two years ago I started on this ‘adventure’ in earnest. I should have given it more thought myself. It is now ski weather here and I have been trying to find ways to the slopes. People don’t like to give me the time of day when I contact organizations.

They imagine being in charge of some decrepit, old, blind woman flailing her white cane as she flies down the slope! Not exactly the case. Many of us are actually very competent and independent given our vision losses.

Vision loss bring up thoughts of skiing? Yeah, sorry. It was right after a glorious day on the slopes that I ‘lost’ my second eye just about two years ago. I was in a tizzy. But keep in mind, I was skiing three times last year (thanks to my husband and the daughter of a friend) and I am going to try to get there three times this year. And if I get there and discover I am no longer capable? I tried.

That is probably one of the things I like to preach about vision loss, or at least my level of vision loss. (You can never tell how you may react if given a greater challenge so be kind to yourself). You never know until you try. There are all sorts of ways to skin the proverbial cat (although I am not sure why you would want to!) and you just may have to try a few of them before you hit upon one that works.

The flip side of that coin is this: if you are a caregiver, friend, spouse, child, whatever to a visually impaired person, give us a chance and let us try. As long as we are not going to cause mayhem or mass destruction, what is the harm? Sure, be there to bail us out if you insist, but let us try.

Now remember, I am not talking about operating heavy machinery – yes, such as a car – but walking, skiing, riding a bike, even things like using the microwave or the washer; I am pretty sure many of us can have those things covered if given the chance.

Our vision loss has taken away some of our independence. Please don’t take away the rest.

When we started this project, I was asked what I thought others could do to help the newly visually impaired. I said it would be to support that person in continuing to be herself. Looking back, I agree with myself.

So I guess my message for our second anniversary would be this: Find ways to be you. AMD has taken part of your sight, not part of your soul. Find people who will help you to remain yourself, foster your talents and promote your interests. If they are not in your life now. Find them.

Remember, you need you and we need you, too.

And now I guess I need to try somebody who will give me a ride to the slopes!

Written 1/15/2018 Continue reading “Let Us Try”

Sight Loss as a Challenge

Greetings. I have a dozen things to do and very little done. Maybe writing a page will help to get me motivated.

I read the pages from our two, most recent guest authors. Great pages from what sounds like two, good people. They both sound like people who took their vision loss as a challenge rather than a death sentence.

People who may have had to let their disability slow them down but never let it stop them.

Right now i’m pretty sure there are some of you who are bristling about that last paragraph. How can sight loss be a challenge? Challenges have a chance of being overcome. How am I going to overcome THIS ? I cannot accept this. I can never resign myself to going blind!

I touched on this a little before but I want to go into this concern in a bit more depth. Acceptance is not resignation and resignation is not acceptance. Acceptance is acknowledging a set of less than ideal conditions exist. For example: I am losing my sight. Acceptance also means acknowledging there are some things you have to give up or some new strategies you have to adopt in order to get by. Acceptance allows you to test the environment and make the allowances needed to move forward.

Resignation is not acceptance at all. Resignation means giving up. It is ripping your clothes and throwing yourself on your proverbial sword. Done. Over. Finis.

I know people who have given up. After all, “I is a psychologist; I is.” They moan. They complain. They lament the truly raw deal they have gotten from life.

What is left for these people? Not much. Not if they don’t learn to accept their situation. Resignation is a dark pit with no ways out. Acceptance allows you to see the branching tunnels with the glimmers of light at their ends. Acceptance makes room for hope.

There is a saying, “happiness is wanting what you have”. It is sort of a pop culture rendition of the Second Noble Truth. Yeah, Buddha again, and I’m a non-practicing Methodist, for crying out loud. What can I say? Siddhartha was one enlightened guy. I like him!

To refresh your memory, the Second Noble Truth says that desire, craving, wanting is the root of all suffering. In other words, pining after what you don’t have and you cannot get makes you miserable. Accepting the situation and being grateful for what you have left lightens the load.

This is not exactly easy. Looking on the dark side has survival value. Therefore we are pretty much pre-programmed to keying into and lock-on to the negatives in life. After all, your ancestors needed to see the wolves in the bushes, not the pretty flowers that were on those same bushes! Seeing the positive takes constant effort and a whole lot of – another DBT alert – turning the mind towards what you need to do to accept and feel better.

So kudos to Vickie and Bob. They seem to be actively working to accept, make the best of bad situations, and move forward. And encouragement to the rest of you. Accepting you are losing your sight will free you from hopelessness. It will free the energy you are using on worrying and fretting and allow you to use that energy to find ways to enrich your lives.

Remember accepting is not resignation and we who accept are NOT giving up. There will be an answer. We will find it.

January 13th, 2018

Next: Underwhelmed

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Bake It Out

Greetings from Chaos. The last few nights the puppygirls have had me awake two and three times each night. Lack of sleep is a stressor. Stressors increase cortisol and cortisol damped immunity. Bottom line: I’m sick.

I went to exercise anyway. Creating an artificial fever is a good way to fight infection. (See Vasey’s article in InnerSelf if you don’t believe me.) Athletes – and athlete wannabes like me! – do it through sustained exercise.

I also came home and took a hot bath then curled up for a nap, covered in blankets. My mother used to suggest I ‘bake’ it out of me and she was right.

However, it is not just the heat fighting the germs. There is scientific evidence that certain types of immune cells do better in a warm environment. In a December 13, 2011 article in ScienceDaily it was reported CD8+ cytotoxic T cells ‘like it hot’.

T cells are macrophages, ‘big eaters’. There are a number of different types of T cells and I don’t believe CD8+ cytotoxic T cells have a thing to do with AMD as other T cells have been suspected to.  Of course, I could be dead wrong. However, it is a good way to get me back on the topic.

Oh! Another detour: I am taking turmeric for the inflammation in my rotator cuff tendon (killing me now because I ramped it up in yoga. Someday I might learn.) Searching the combination turmeric + age-related macular degeneration I discovered turmeric is an antioxidant. It is recommended by all sorts of websites with natural, earth, sun, alternative, etc. in their titles. The take home message on this is: it is a supplement and has not been proven to do anything for AMD. It is helping my tendonitis. Sample of one. Take it for what it is worth. Do your own research. Pay your money and take your chance.

Since I am still feeling a little rough, I will probably just introduce the topic Lin wants me to cover and come back to it later. The topic is Seeing AI from Microsoft. I had the 1.0 (or whatever) version on my iPad and got very very strange results. This was with identifying people and scenes. I did not use any of the other programs contained in the app because I already have programs to do much of that stuff on my iPad. Basically, I did not need the redundancy.

I am proposing I look at all of the new things 2.0 does and compared their performances to the performances of the apps I already have. Sound good? Can we make this a class participation project? I would like to hear what you think?

The first positive thing I noticed was the app upgraded automatically. That was a plus! Let us look at short text and see what we think.

Written December 23rd, 2017 Continue reading “Bake It Out”

Suck It Up, Buttercup

I try not to throw pity parties for myself. I really do. Some of the time things might not be great but I get by without a lot of feeling sorry for myself.

However, sometimes other people send out the pity party invitations and I am very tempted to attend.

What am I talking about? I was finished with exercise class and waiting for transportation. Again. A friend asked if I needed a ride. “No. I’m good.” And I waited…and waited…and waited. The instructor finished whatever instructors do after class and started for her car. Why was I still there? Was I sure I had a ride? She looked at me with such concern I wanted to cry.

I finally got home – five miles – an hour after class had ended. I got to eat at 8:30. God, this is a pain!!!!!!!!!

Since it is generally good to work through these things before they grow legs and run away with you, I decided to write a page. Self help, ya know?

I know none of you fine people ever feel sorry for yourselves, but bear with me while I work through this; OK??

I found a Psychology Today article from 2013. Russell Grieger, the author, seems to blend a bit of DBT (alright, so I see DBT in just about everything) with a bit of “suck it up, Buttercup!”   Grieger quotes George Bernard Shaw as saying “People always blame their circumstances for what they are. I don’t believe in circumstances. The people who get on in the world are the people who get up and look for the circumstances they want and if they can’t find them, they make them”.  Grieger divide people into two groups. To shorten what he said, these groups are the whiners and the responsible ones.

I don’t believe there are two groups. I feel there are two approaches and most people flip back and forth. Sometimes you have to utter a few “Really!?!? Are you KIDDING me?!?!”s before you can get back in the game.

Geiger does make some suggestions for not getting stuck in the whiners’ camp. Some of them are rather familiar. Pain is the human condition. What makes you think you are so special?  No, life is not fair. Shit happens and it happens to the nicest people. The corollary to that is “the bad guy does not always die at the end of the movie. Sometimes he gets the girl and rides off into the sunset.”

Then the much nicer ones. You are stronger than you think. You can chose not to let this dictate your life.

Geiger did not add these but I am going to. The reason I ride the #¢≠π~£! van is it is a means to a positive end for me. Without it I could not be out in the community doing my thing. I can suffer a bit if it gets me what I want. The second thought I had was “no mud, no lotus”. I like to think the adversity will make the a better person. Good things can come from adversity if it is faced with the proper attitude.

So there that is. Pep talk done. I guess I can “suck it up, Buttercup!” one more time. Shaw would be pleased.

written December 21, 2017 Continue reading “Suck It Up, Buttercup”

Broken China

Hello, there! I woke up at 3:30 last night with rotator cuff tendonitis pain. While the over the counter nighttime pain reliever got rid of the pain, it may have worked a little too well. I woke up at 9:30 to the remnants of a puppy party!

Crawling on the floor picking up pieces of whatever they had chewed, I discovered the knobs on the drawer in my father’s gun cabinet had been pretty thoroughly gnawed.

If I were fully sighted, would I have noticed it before this? Not sure, but my guess would be yes.

Putting away dishes a little later, I had several, small bowls leap out of the cupboard and hit the counter with a resounding crash. Thoroughly scared Maggie. Although she is the rowdy pup she is also the more sensitive one.

Of course I did not have shoes on again. Dealing with shards of white bowls on a light-colored floor, I had to call my husband for help. Why can’t any of my ‘disasters’ happen with good contrast!?!

If you have not been following along I want to mention this is the second time I have been standing in the middle of a mess of broken kitchenware. Sans shoes, of course. If Lin would be so kind, I believe we could get a link for you…here. There are some suggestions I stole from the experts. [Lin/Linda: Sue’s page is called Did You Drop Something?]

While I really cannot say any of the occurrences this morning incited a panic reaction in me – I actually thrive in chaos; tedium drives me insane – I suspect some of you might have had a meltdown. Vision loss plus insane, chew-happy pups plus broken china. OMG!

I remembered I was just given some 100% natural (and, yes, I know a good, stiff whiskey is 100% natural, too) ways of dealing with panic and anxiety. Thought I would share.

The sympathetic nervous system is the one that activates your fight or flight response. It is the one that causes your heart to beat faster and you to experience stress. Good when it is needed but not needed all of the time!

The system that brings you down again is called the parasympathetic nervous system. A big part of this system is the vagus nerve.

They are finding stimulating the vagus nerve helps with panic and anxiety. The most popular technique, as you may know, is breathing from your diaphragm. There are, however, a number more strategies you may wish to try.

In 2014 Newsmax published a list of simple tricks to reduce stress through stimulating your vagus nerve. Immersing your face in cold water is helpful. Another technique is to suck on something that will immerse your tongue in saliva.

According to a 2017 article in Optimal Living Dynamics, singing, humming and chanting are helpful in stimulating your vagus nerve. This article also suggests some of my favorite things: socializing and laughing, exercise and yoga.

Controlling your reactions to sight loss and its problems is almost as important as caring for your eye health itself. Next time you find yourself stressing, give some thought to your vagus nerve.

And repeat after me: Ommmmmmm…….

written Dec. 12th, 2017 Continue reading “Broken China”

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”

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”

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”

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”

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”

Come Dance with Me – Again

End of a busy Saturday. The big news of the day is we met our puppy! She is all picked out and will be ready to come home to her new mommy and daddy on November 18th.

I also got back to my exercise classes. My routine will only be in place for about a week before I go running off on vacation but that is alright. Things will settle down soon after. I hope. No more ride snafus, food poisoning or adventures for a bit.

While I like a little adventure (but not ride snafus or illness!), sameness and predictable are really good. I like the familiar, too.

Such as the Eastern screech owl ‘whinnying’ outside the window. He has been there most nights for several weeks now. According to web sources, that is a territorial defense cry. Wonder what he is defending against? Apparently there is a hidden drama unfolding in the backyard!

One of the other things I got done today was going through some Healio and Medscape posts for articles. They are still publishing that Manchester, U.K. research saying eye shots cause anxiety and depression and my reaction is still “Duh! Ya think so?”

But the next things I came upon were actually related to that article – about depression and mental functioning – and gave me more reason to harp on exercise again.

I absolutely love it when things I enjoy doing are found to be good for not only physical health but cognitive and emotional health, too! It makes me feel so righteous to say I am doing it because it is recommended even though inside I know I would do it anyway. Like being told eating an entire chocolate cake with a half gallon of vanilla ice cream is a nutritious meal! Recommended at least three times a week!

Oh well, that might be a little extreme (a girl can dream; can’t she?). However, the Medscape article ‘Dancing Keeps Older Brains on the Ball’ gave me a rationale for being the ‘grand old lady’ at hip hop class as well as one of the ‘dowagers’ at Zumba.  The article talked about how the integration of info from multiple sensory sources such as hearing the music, watching the instructor and feeling how your own body is moving in space is good exercise for your brain. The researchers discovered the demands of learning new dances every week or so in addition to the balance demands of dancing literally beef up your hippocampus. The hippocampus (seahorse in Latin as I mentioned before) is your memory center and tends to shrink in old age. The researchers ended by saying “our study results suggest that social enrichment and a combination of physical and cognitive activities influences neuroprotection best”. So there!

And of course I got so excited about having a SCIENTIFIC rationale for putting on my boogie shoes a couple of times a week, I did not leave myself space to write about the other two articles I found. But good news: one of the articles on exercise and depression talks about the levels of exercise effective for battling depression and guess what? It was practically nuthin’. See? You can read the next page even if I am being a noodge!

October 22nd, 2017

Continue reading “Come Dance with Me – Again”

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”

Just Relax

Hello! Woke up this morning to find my husband online shopping! This is a great move forward considering how technophobic he used to be. I may not be 100% crazy about his purchases (do we really need that?) but it is a bit comforting to know he will know how to get online, shop, pay, etc. if/when my eyes get too bad.

My husband found an ad for Labrador Retriever pups so I called. The litter they have now will be ready right before we leave for vacation but a second litter they knew of will be ready right after we get back.  Cautiously hopeful. We will go and look at the set-up, parents, pups next week.

And yes, I know, I should get a shelter dog, etc. I am guilty but …..puppy!

I am about halfway through my crazy list of activities for October. Sort of loaded heavy in the beginning of the month. Gives me time to load the back end. I did NOT say that! Did I?

Anyway, so glad to hear our guest authors are also busy people. Riding horses and volunteering for all sorts of community projects. You go, girls!

Any of you guys want to volunteer for a page? I think Lin said at least 25 or 30% of the Facebook members are guys. How about a male perspective ? I also was told some of you are eye care professionals. How about the view from the other side of the machine?

We never did fly yesterday. Point of information: balloon pilots (captains?) will not launch if the winds are more than 8 miles an hour. Nate is making its way up the coast and we got some of that. Maybe. Anyway, it was windy.

My friend who took me (you ever feel like baggage when you say that?) is my fitness freak friend (alliteration!) and was driving both herself and me insane when we had to wait two hours to see if we could fly. I sent her to run – literally! – twice. She did about four miles.

My friend does not know how to relax. It is an art many people do not know. I can do it for short periods. For those two hours I lay on my back, watched the clouds and listened to the entertainment. I am not looking forward to two days of downtime when we are literally at sea on the upcoming cruise. Last time that happened I did a lot of pacing.

So how to relax when you cannot run it off or pace the deck? I found a Psychology Today article from 2013. The author, Will Meek, had distilled the relaxation process down to five steps. His process involved ways to change your physiology to change your emotions. Dr. Meek, Will, suggested orienting yourself to your environment. You do this by taking in sense impressions to recognize where you are. Then you ground yourself by noticing how you are connected to your environment. Right now I am noticing my butt on the couch, my laptop on my knee and the dishwasher humming in the next room. Next Will suggests an inner focus on your breath and heart rate. Deep breathing. While still breathing deeply give yourself a pep talk. Tell yourself you are strong. Tell yourself you have supports. Tell yourself Jesus or Allah or whatever deity you believe in has ‘got’ this problem in hand and will help. Tell yourself what you need to tell yourself to feel more in control. The last step is emerging. Focus on bringing yourself back to your problem with a relaxed attitude.

Now this page is about 100 words too long already so I am signing off here. May be back later. Never did get that article critiqued. Bye!

written October 8th, 2017

Continue reading “Just Relax”

Be Prepared

I have decided a poor memory and poor vision leading to no driving is a bad combination. Once again what I planned to work on got left at the office. Really thought it was in my bag.

I have been roaming the house, picking things up, doing laundry and filling the dishwasher but we all know keeping house is not my shtick. (Just take a look at this place!) I did bring one file home to work on. Should do it but I have these articles on disaster and the visually impaired that I ran off, so…

Sue redux! Explain to me why I thought I had actually shut up!

Disasters – and this time I am not talking about my housekeeping – and visual impairment are another nasty combination. According to a 2007 American Public Health Association article, eye injuries are very common during and after all kinds of disasters but yet, at least ten years ago, most emergency response teams know very little about managing eye injury and other problems.

I looked for more recent articles saying they had beefed up the eye injury training for first responders in the last ten years. I found nada. That means these people could very well be scrambling to deal with stuff like penetrating eye wounds, chemical exposure and retinal detachment, not to mention infections and other such things with very little training and materials to do the job. And that means, my dears, we with our progressive vision loss condition are on our own. Not that I would not want the guy with the pierced eye ball to go ahead of me in line, mind you. Just saying, we need to expect to be very low priority.

Wisefamilyeye.com – love your logo! – did a page on preparing an eye emergency kit and putting it in your go bag. They suggest spare, impact resistant glasses. I suggest also having a copy of your eyeglass prescription. You might want to store it in drafts in your email so you can access it from anyone’s device. Wisefamilyeye.com also suggested safety goggles and sunglasses, artificial tears and saline solution (you might want to add an eye cup if you have one) and at least two weeks of prescription eye drops.

I already touched on clean-up with my mention of my bout with flood mud crud. Flood water contains EVERYTHING you can think of. Sewer plants and chemical plants cannot get out of the way so everything they contained will come to you. Safety goggles are a must. Protective clothing, such as heavy rubber gloves and thick soled boot if you can find any. And face masks. Face masks are good.

Essentially, disaster preparedness is just that: being prepared. The American Federation of the Blind put together their own checklist. Their list included having emergency numbers nearby and knowing who to call to get yourself evacuated asap. This could be either a buddy, the local authorities or, even better, both. Let people outside of your area know your predicament and that you might be coming to visit!

If you have a service animal – or any animal! – make plans for him or her as well. Reasonably sure evacuation services and shelters must take service animals. They do not have to take pets and rumor has it, many people recently refused to go to shelters rather than leave pets behind. Do not allow yourself or your animals to be in that position.

If recent events are any indication, we can expect to have more (and more?) disasters as time goes on. Be prepared.

September 30th, 2017 Continue reading “Be Prepared”

Practice What I Preach

At present I am waiting for the van….again. These pages seem to turn into one big tirade about the truly crap public transportation we have in this rural region.

I got up to get a 6:54 am van to work (having told them I need to be there at 8:30) and I just got the call it would be another 45 minutes until they arrive. Really?!?!? This is on top of being told they could not bring me home Saturday because my seminar is in another zip code, 5 miles away.

I am angry. I am frustrated and I am resentful. Resentment is defined as bitter indignation. It implies unfair treatment.

From the complaints I have heard from the other people who ride the vans, I suspect I am not being discriminated against. Everyone is getting the same lousy treatment. Just the same, it is not fair!!!!!

Yes, I know fairness is an illusion. I know resentment is, as published in Psychology Today way back in 1995, futile and destructive. I am aware my resentment is most likely disproportionate to the damage that has been done.  I am still pissed!

Psychology Today goes on to talk about how resentment is based on internal need rather than external circumstances. If I did not believe I DESERVED better treatment, would I be as resentful? I would say not. I am arrogant enough to believe good things should come to me almost all of the time. Having those ‘shoulds’ in my head sets me up to see things as unfair.

Resentment gives us a target for our frustrations. “This damn transportation company is to blame for my life not being easy! I could do so much more if I only had decent support!” Resentment allows us to forget that while things are caused, sometimes we are not staring at the cause face to face. Things could have been set in motion a long time ago. Your ‘injustice’ may be just another domino ,’victim’ not the agent that set things in motion. Easier to assign blame to what you can see.

So, recognizing that venting my spleen (who said THAT, anyway? Shakespeare?) at the van people may not be productive, I went online and found a couple of articles. PsychCentral.com pushed the empathy angle. Remember “walk a mile in his shoes”? It helps to look at the other party’s viewpoint, their situation. Are they doing the best they can under the circumstances? Psychology Today suggested something’s that sound, well, rather DBT-ish. They suggest you observe your resentment and sit with it for a while. They also suggest relaxation and self-care.

DBT as one-step shopping?

If I actually try to practice what I teach, I would have to admit rehashing all of the nonsense with my transportation situation is not being mindful in the present. The only thing I can deal with is the now. I should also practice some gratitude. Do I have a lot of freedom because the system exists? Yep. May not be exactly the way I want it to work, but it works…sort of.

So, in consideration, perhaps I should be a bit more tolerant. Deep breath…I feel better now. Thanks for listening!

written 9/22/2017

Continue reading “Practice What I Preach”

Preparation: Start Now!

Greetings from a rainy Labor Day weekend. Supposedly this rain is a Harvey leftover. We had a ‘little flood’ here six years ago right about this time of the year. What a mess! Hubby and I did not get much of that; we are on a hill. However, I went into town to do some shoveling and needs surveys….Never got so sick in my entire life. Flood mud crud is nasty business, folks. If you are helping, wear masks and goggles. Take any innoculations they offer. I was sick literally for weeks.? Once more, try to profit from my stupidity!

Of course, the good news is what doesn’t kill you can make you stronger. Except for the food poisoning I don’t think I have been sick since! ?

Anyway, in the States Labor Day is the unofficial official end of Summer. That means today before the rain we were preparing for cool weather. The houseplants came in from their summer home on the deck. I picked the tomatoes that had not yet ripened for my friend’s mother. She is supposed to make a mean green tomatoes pie. Ran into a little snag in trying to close the pool, but that will get done before the leaves start to fall.

Preparation. We prepare for Fall. We prepare for holidays. How many of us prepare for vision loss?

Many of you are in the early stages of this disease. I truly believe research will soon make it possible to slow or even arrest the progress of AMD. I believe you could easily be spared the worst of AMD. But just the same, preparation is a good thing.

Harley Thomas is blind. Last February he wrote a piece in his blog. The title was, of course, How to Prepare When you Are Going Blind. Harley (he looks like a nice guy so I will refer to him by his first name) says preparation can give you a sense of control. He agreed with other people I have read in saying starting now to learn skills will make things much easier later.

Harley would approve of us all learning about our disease. He would also approve of how we are coming together for support. He talks about ADA and telling your employer about your sight loss.

There are lots of references and links on Harley’s page. One of them is entitled “What to Tell Your Employer When You Are Loosing Your Sight”. I have not read it yet but somehow I don’t think it says to call work in hysterics directly from the doctor’s office like I did!

Harley suggests habilitation/rehabilitation and independent living courses. He also talks about getting your house organized. All good ideas with links to how to posts. [Lin/Linda: if you’re curious, there’s a difference between habilitation & rehabilitation.]

What Harley does not talk about are transportation and finances. To me, these are huge! I believe trying to get services and benefits from the government can be one of the most convoluted and frustrating things you have ever done. It literally took a couple of months to line up transportation. I had straightened our financial house several years ago when I got an inheritance. If I hadn’t, the income loss could have been problematic. Looking into the basics of getting around and doing what you can to get – and keep – your finances in order is crucial. Start now. You will be glad you did.

Written September 3rd, 2017 Continue reading “Preparation: Start Now!”

Home Away From Home

We all want to be independent and live in our own homes as long as absolutely possible. Still, there may come a time that vision loss and other disabilities make it difficult for us to do that.

Many people are looking at alternative living arrangements to satisfy their needs. For example, my mother-in-law lives in a ‘continuing care community’. She has her own house but the facility takes care of all the outside maintenance and any interior repairs…right down to changing light bulbs if need be! The community has affordable van transportation and a community center where some meals and entertainment are offered. If there is an emergency, people from the facility are right there. They also maintain their own, small security force.

If my mother-in-law should require assisted living and/or a nursing home, they are right there on campus. She is guaranteed placement.

Of course, my mother-in-law does not have a vision loss – I am the ‘lucky’ one there! – but I would suspect many of the community residents do. Problem is, many if not most of the care communities have not caught on to the fact they actually have visually impaired residents! And if they do realize they have them, they don’t know what to do with them.

If you are interested in assisted living, what should you, as a visually impaired individual, look for in a facility? After all, we don’t intend to sit in bed all day. We want to be as independent as possible and the staff should help, right?! Right!

VisionAware to the rescue. They have a short article on Help for Seniors with Vision Loss: Tips for Assisted Living Staff Members. They also did a short webinar and have the transcript for that at the end of the page. While this article is meant as a tutorial for facility staff, you or your agents can use it when shopping for assisted living.

We have talked about many of these before in the context of making your home safer and more livable. It is important to control glare and use contrast. This includes contrast tape on all stairs. Bold fonts and contrast should be used on handouts and enlarged or tactile versions of games should be in the game room. Staff should understand how to function as a sighted guide. Hallways should be free of clutter. Low furniture and throw rugs likewise should be avoided.

When you go for your tour, staff should make an effort to talk to you about the layout of the facility. Descriptions should be just that: descriptive! If the dining area is 20 feet on the right, it is 20 feet on the right, not up here somewhere.

Then of course we come to a horrible blind joke from when I was a kid: how do you punishment Helen Keller? Rearrange the furniture! Meaning, if you are looking at a facility where they rearrange furniture and move things from their typical places on a whim, it may not be the place for you.

Hoping no one has to make such a move before they want to, but if assisted living becomes a necessity for you, try to make sure the place is attentive to your needs. After all, you are a VIP!

Written September 2nd, 2017 Continue reading “Home Away From Home”

Drugs with Eye Side Effects

Every once in awhile I have a van ride during which I am really ‘white-knuckling’ it. Forgive me, but it is always one of the older drivers.

Those are the rides I really want to kick them out of the driver’s seat and take over myself. I believe I could do a better job!

The other week we went onto the berm on the right and crossed the double, yellow line at least once in a seven or eight mile trip. I was hoping not to get the same driver again but the next day, one guess who sat in the driveway. On this trip he started out by regaling me with a list of the near disasters he had had during the previous week. Dare I say this is NOT a way to instill confidence in your passengers?

He then went on to tell me he had discovered his medication was giving him double vision. The double yellow line was quadruple. Take your pick which one you want to stay to the right of!

The moral of the story for us could be stay away from impaired van drivers (although in truth we are often at their mercy) but right now I want to talk about drugs that affect your vision. There appears to be quite the list of medications that can really mess up your vision and some of them can actually damage your eyes.

I found a 2011 article in Review of Ophthalmology called Systemic Drugs with Ocular Side Effects. It may not be totally up to date but it seems to be a good general overview.

For example, Fosamax for osteoporosis can cause inflammation of the eye. Cyclosporine and Tacrolimus given for organ transplants can cause vision loss as a result of their effects on the sight center of the brain. Fortunately this is generally reversible. Then there is Minocycline, an acne drug, which can cause brain swelling and permanent vision loss.

So far safe? No osteoporosis or acne? How about rheumatoid arthritis? Plaquenil is a known retinal toxin with irreversible side effects. Fortunately, taken as prescribed you should have no problem but don’t overdose.

Topamax is for migraines and epilepsy. Topamax has been known to cause glaucoma.

How about pee problems? Anyone taking Flomax? There is a syndrome called floppy iris syndrome. It makes cataract surgery risks a lot higher.

Then, for you guys, there are the erectile dysfunction drugs. Viagra and Cialis both divert blood from the brain. There are all sorts of problems here. First of all there is blurred vision because this interferes with the neurotransmitters in the retina. Another problem is central serous retinopathy which is a collection of fluid in the macula.

Unfortunately the list goes on and includes blood pressure medication and over the counter herbals. There are many, many medications that you never thought would have any impact on your eyes but do.

The takeaway message for this page is tell your eye specialist everything you are taking, everything including over the counter medicines and herbal remedies. Some of your vision problems might be drug related.

written 8/29/2017 Continue reading “Drugs with Eye Side Effects”

Managing Medications

Never really thought about it in quite this way, but VisionAware has a series of ‘getting started as a visually impaired person’ posts. Sort of like a starter kit for a hobby. Instead of scrapbooking or constructing terrariums, we get visual impairment. “Oh, yes, did I tell you? I’m taking up visual impairment. This book says that in just six easy lessons ($19.99 each) I can have the start of a very promising visually impaired person. And the book says I can do this at home in my spare time!”

Uh, yeah. Really did not need another hobby…especially THIS one.

That is not to say, however, that a ‘how to’ series for vision loss newbies is not a fine idea. It is such a fine idea I am going to borrow shamelessly from them in writing this, and perhaps another page.

The page I am borrowing from is entitled Products and Devices to Help You Identify Your Medications. In that article they cover all sorts of clever ideas for trying to make sure we don’t poison ourselves. I vote for that!

Some of the suggestions in their article are as simple and low tech as keeping a black tray in the bathroom so you can have contrast to see your pills. Others are more high tech. The one I am going to focus on is a high tech option: audio description.

The VisionAware article mentions several different options for audio description devices to use with your medications. There is one manufactured by AccessaMed and there is another one called Talking Rx. But the one I want to talk about is ScripTalk. Why? Can’t write about everything in 500 words.

According to a disabilities lawyer (lflegal.com), many pharmacies are now offering talking labels and label readers for medication bottles. The lawyer’s website gives kudos to a number of chains. (We will ignore the thinly veiled attempt to drum up litigation business.)

I will get back to offering some chain names in a minute but first let’s talk about how this works. Apparently your pharmacist reads the label information into a device that digitizes the information and puts it on a little label that he attaches to the bottle. When you get it home, you have a reader that will allow you to hear what the pharmacist said.

Now, ScripTalk is offered through CVS, HEB, Walmart and Humana. It is a free service to satisfy the requirements of ADA. Of those four corporations, however, the article lists only the customer service numbers for CVS and WalMart. Got a pen? The CVS number is 800-746-7287. The Walmart mail-order pharmacy number is 1-888-237-3403.

Just because you are not in the States and subject to the ADA, does not mean you cannot get medicine bottle labels that talk to you. I have it on pretty good authority (the Vancouver Sun online from 10/07/2016) Shoppers Drug Mart was sued under Canadian accessibility laws and now offers ScripTalk, and free use of a ScripTalk reader.

In the United Kingdom Boots started offering talking medicine labels in 2006. (My, but the Colonies are Johnny-come-latelies on this!) Not exactly sure what is happening on this issue in Australia. Most of what I found there was about a general relabeling of all pharmaceuticals. Anyone know?

Call your pharmacy and see what they offer in the way of audio description labels and readers for your medications. If they have nothing it might be good to remind them this is an accessibility issue. Nothing then? I heard of this disability rights attorney….?

Have a great evening. Don’t accidental poison yourself.

Written August 11th, 2017

Continue reading “Managing Medications”

Keep an Eye on Your Eyes

I gave up trying to be perfect a long time ago. Too much like work. That is the reason I get it when people let things lapse. You meant to call the doctor about the vision change you think you are seeing but another day is gone and you never got to it.

Or how about this one? You don’t want to bother such a busy guy (or gal) with a silly, little worry. Then there is the forever popular, if I don’t think about it, it will go away!

Yep, dozens of ‘good’ reasons for not monitoring your vision and keeping your doctor in the proverbial loop. My reason for seldom if ever monitoring? (Come on! At least I own it.) My macula is so far gone I am back on biannual visits. I have it on good authority I will most likely not progress to wet AMD. Relief, yes, but I still sort of wish there was enough left I had to worry.

But that is me. There are plenty of you who are still at risk for developing wet AMD. There are also plenty of you who wish they had responded to early warnings before they lost vision. Since that second group are living testimonies to the fact things happen when we are not paying attention, how do we pay better attention to the progression of our disease?

For years the only game in town has been the Amsler Grid. This being the age of technology it is certainly understandable there are suddenly all sorts of machines and apps that not only do the job of monitoring but also narc on you and call your doctor! (Big Brother is even watching your eyes!)

I did a page on myVisionTrack a while ago. I downloaded it but could not play with it because it needed a script from my doctor. It was also for pay. So far this year we have replaced the washer and the dishwasher, rehabbed the pool and had Beastie Baby to the puppy doctor a few times; forgive me if I don’t invest in some of these things. If you use the service, please comment.

The new one I just discovered is ForeseeHome. This is manufactured by Notal Vision, an Israeli company. The company provides an electronic device that is connected to a telecommunication system. Everyday the patient takes three or four minutes to test her vision. If there is a significant change both the patient and her doctor are notified of the need for an immediate appointment.

ForeseeHome is again by prescription only. The frequently asked questions on the website suggest the unit and service are Medicare covered if you meet the eligibility. Apparently you have to be “dry AMD at high risk of progressing to wet AMD”. Am I sure what that means exactly? What I think it means is someone may have to jump through hoops to get Medicare to actually pay for it, but you can get one with a good argument.

If your doctor wants you to monitor much more closely than you are, one of the new electronic systems may be for you. Spend three or four minutes once a day. Eliminate the guesswork. Eliminate feeling guilty for ‘bothering’ the doctor. Help save your sight.

Written August 9th, 2017

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Fighting the Mess

Morning. I am officially overwhelmed. I have said it before: my life is cluttered. My house is cluttered. Sometimes even my mind is cluttered. On one level I realize this is not good for someone with visual impairment. It means I lose things. Lots of things. More things that I ever used to lose.

On another level, dealing with the mess can be just plain overwhelming. I don’t feel like tackling it. Sometimes it is a lot easier to buy new or do without.

Generally, the mess wins no matter what I do.

This morning things reached critical mass – again – and I figured I had better do something about it before it blew up. Parts of my half-hearted effort were to sort laundry and get rid of articles I had printed out but never written a page on.

Laundry and vision loss articles…they may not be two great things that go great together, but one of the printed out articles I found from VisionAware was about blind people doing laundry.

Does that freak you out a bit when things come together like that? That cosmic convergence stuff? Does me.

Anyway, laundry is not that hard for me. I keep the setting the same (except for delicates) and stick a finger in the measuring cup to make sure I don’t run the cup over with detergent. Then I wipe my hand on a piece of clothing so I am not all detergent-y. If I have to change the setting, I use a light to make sure it is right. My handheld reader has a light and that works well.

What I liked were the suggestions they made for ironing. I admire you people who are organized enough to get things out of the dryer and hang them instantly. I know this avoids a lot of wrinkles. I am great for leaving the house with the dryer running or going to bed with it on. Clothes have sat in the dryer for days. Meaning? I iron every morning.

VisionAware has some really good ideas. Since we all know contrast is a good thing when you are low vision, having a solid color ironing board cover is good. They also suggest you get a heat-treated pad to set your iron on when you are moving the clothing, etc. That will allow the hot part to be down and you don’t burn yourself when you reach for it.

Those are the two things you might have to purchase. Ideas that involve things you probably would not have to purchase include using a funnel or a turkey baster to put water in the iron. Personally, I just use an old Febreze bottle and squirt things. Marking the proper setting so you don’t scorch things can be done with that raised marking stuff or even nail polish. [Lin/Linda: When Sue says ‘raised marking stuff’ she means using tactile pens.]

The last idea I liked was finding the iron by grabbing the cord first. If the contrast of the cord with everything else is poor, tie a ribbon on it! After all, safety first.

OK, back to the fight. Personally, I think I am going to lose again.

Written August 6th, 2017

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