Category: Tips for living with low vision

Caveat Emptor

So we have come to the middle of another week. Hump day, Wednesday!

I looked up funny hump day jokes and found a slew. You can take your pick. Some of them are giggle-out-loud quality.

Anyway, I taught today and then went over to the sight loss support group. My low vision person was presenting the latest in low vision technology, the MoJo monocular.

Mojo monocular

I cannot give you much of a spiel on it. I have not done much more than glance through it and pass it on. Therefore, as usual, this is just me telling you what I read. No recommendation.

The MoJo is a magnifier that works both near and far point. The price for the handheld monocular itself is about $1500. Add the part that can turn it into a CCTV and you are looking at $3000 or so. The manufacturer, Enhanced Vision, advertises a large field of view and autofocus capabilities.

This may be a great addition to the list of low vision tools. May not be. The MoJo has only been on the market for two or three months. If you are interested and have the money, try it and give us a product review.

And continuing in the interested and have the money vein, I have started to see articles suggesting that, in spite of its celebrity endorsements in the UK, the Eyemax Mono may still have some bugs to work out. The Daily Mail reported the Macular Society is suggesting caution before you agree to undergo this expensive procedure. The cost being quoted is £15,000 which at present exchange rates is approximately $19,480 (May 2017). Ouch. And if you are an American, remember the Eyemax Mono is not FDA approved and added to that cost would be a trip across the pond.

In short, it sounds promising, but remember caveat emptor. Use extreme caution before committing to any new procedure. Do your homework. Nothing is ever as good as it sounds at first blush.

The newest implant this side of the pond is a miniature telescope. This one is FDA approved so it should be both effective and safe. The manufacturer is VisionCare.  The surgery is Medicare eligible according to the article so we are not talking about huge out of pocket costs. That is a plus.

Now, once more, on the minus side, this is not a cure and will not halt the progression of the disease. All it is is magnification and a spreading of the image to intact parts of the retina. They have moved the magnification system from the outside in.

They also will only do the implant in one eye. That is because there is a ‘tunnel effect’ in the vision of the treated eye. The untreated eye is used for peripheral vision.

Another problem with the telescope is the need to train the brain. There is a period of several weeks during which the patient is learning to adapt to a new way of seeing.

Bottom line, things are progressing but not necessarily in the areas of treatment or cure. All three of these things mentioned magnify and move the image to intact retina. Close, but no cigar.

My personal preference is to find something medical that will stop the disease progression in it’s tracks. Barring that, magnification and relocating the image may bring you an undetermined period of better sight. You pay your money and you take your choice….just do it wisely.

May 10th, 2017 Continue reading “Caveat Emptor”

Hindsight is 20/20

Good evening! How are you all?

Lin has noticed I seem to have written soooo many pages they are overwhelming and confusing some people. She feels this is particularly true for some of the newbies who probably feel like they have walked in on the (boring and confusing) middle of a movie. [Lin/Linda: to be clear, those are Sue’s words! ::grin::]

Understood. Some of you are back in the shock and doom phrase and I am talking about getting newspapers on your phones and other trivial matters. Who wants to hear about that sort of thing while your world is unraveling?

In the interest of pointing you towards something that might actually be helpful, Lin is republishing some earlier pages for your attention and discussion. And I – always helpful – am going to add to the confusion by writing another page!?

This page will have a catchy title thanks to Lin, but right now I am going to call it “What I know now that I wish I had known a year and a half ago”.

First, you are not going everything black and dark blind.

It is not good but neither is it quite that bad. You are losing central vision. Things will not be good for anywhere from about 15 to 60 degrees of arc. Since normal visual fields are 170 or so degrees of arc, you have the potential to lose about a third of your vision. Not anything to cheer about but better than 100%.

You may not be doomed to progress to end stage AMD.

About 15% of patients become ‘wet’. About 15% progress to geographic atrophy. That means you – starting out with drusen and a diagnosis of early AMD – have a 85% chance of dodging the proverbial bullet for end stage AMD. You may very well not get as bad as I am and a year and a half after my second eye went to hell, I am still functional. [Lin/Linda: a person can have both wet AMD and geographic atrophy in the same eye.  I don’t what that does to the %, if anything.]

You did not cause this.

Yes, AMD is caused but it was not caused by anything you did or did not do. The causes are in your genes. This is a heritable disease. There are dozens if not hundreds of genes that are being investigated to try to figure out how AMD is created. It appears AMD may just be the result of a genetic ‘perfect storm’ and there is no one to blame.

There may come a time you are seeing things.

I saw some odd stuff when my brain was working overtime to assign meaning to the faulty images my eyes were sending it. You are not psychotic (I hope you are not psychotic). This is Charles Bonnet Syndrome. When your brain gives up trying to assign meaning to false signals you will stop seeing weird ‘stuff’. In the meantime, enjoy the fantasy.

Point number last: There is an amazing amount of hope for treatment and eventually a cure for AMD.

Research is going on everyday. New discoveries are announced with regularity. The medical community is hot on the trail of something that will arrest the progression and may even reverse this disease. All we have to do is hold on.

OK. Those were my biggie when I first lost my second eye. What are you worried about? Please share and we can discuss it. Continue reading “Hindsight is 20/20”

When You Say That, I Feel…

Ouch. I danced for about three hours straight at the Mom Prom last evening (Mom Prom=over 21, all female, children optional). Now I am waiting for a ride to the river to kayak.

Left to my own devices I probably would not have entertained the idea, but I had the invitation. I take what is offered and am glad for it in the moment.  Even though I have a twinge in my upper back. How did I get THAT? To reiterate: ouch.

Lin said the page on stupid things people say led to a Facebook group discussion. Apparently the world over people say dumb sh….stuff.

Doesn’t surprise me. Race, creed, nationality? Doesn’t matter. It is my contention the huge majority of people are basically kind. They are uncomfortable when faced with the suffering of others and don’t know how to ‘fix’ it. They therefore make inane comments and sometimes downright stupid suggestions.

What people often don’t realize is that they do not need to fix anything! Very often the best thing they can do is just listen to us vent. I will occasionally define the parameters of the exchange. You know: “I know you cannot do anything about this, but I really need you to listen to me.”

If outright telling them you are not asking for advice doesn’t work, or if the dumb questions or advice just ambush you, Shamelessmag.com’s article about Unhelpful “Helpers” has some suggestions. Now, personally, I found some of their examples a tad blunt (amazing considering I am often the queen of tactless), but the premises behind them are sound.

Let people know you are not their cousin’s wife’s uncle and that everyone with AMD is unique. Remind them you are dealing with a doctor who is knowledgeable and whom you trust. (if that is not the case, start shopping for a good retinologist!) Refer them to the web to research the condition. (That should shut them up!)

You can also acknowledge what you believe are the feelings behind the comments. Acknowledge they are trying to help and that they feel helpless in the face of your condition. Acknowledge you often feel the same way and ask for emotional support.

An oldie but goodie to use might be “I messages”. The formula is pretty simple:

“When you do this specific thing I feel in this particular way and in the future I would like you to do this.”

For example: “When you tell me I am only losing my central vision and will not go ‘blind’, I feel you are trivializing my problems and I do not feel supported. Losing central vision is distressing to me and in future I would like you to listen to me and not say that.”

So, take that! ?

And back to my basic premise: when all is said and done, most people are just trying in their own, clumsy ways to help. And when there are 100 ways to do anything, 99 wrong, 1 right, most people will go through the 99 before they stumble on what they should do. Be patient and help them out. Tell them what you need. Remember this is a learning experience for all of us.

Continue reading “When You Say That, I Feel…”

Attitude Adjustment

Alrightee then. End of feeling sorry for myself…for now. When the horse throws you off, you get back on and all that. It is attitude adjustment time.

Counting my ‘positive pennies’ the first half of today has been good. I tried my gown on this morning and it fit. That is a positive. I picked it up for $25 two years ago at the thrift store. It is actually a pretty gown for $25. This evening my gown and I go to the Mom Prom.

My husband dropped me off on the other side of those two, scary main roads and I rode my bike the rest of the way in to Zumba at the Y. Then I rode into town, chained my bike at the library and went to the street fair.

Since my class was putting on a demonstration, I participated. Participation is often a good thing. Afterwards I wandered around, ate fresh-cut fries and a chocolate brownie (we have discussed my dietary shortcomings; haven’t we?) Also ran into several people I know.

Back on the bike for the ride home. Coming home I passed a whole hedge of lilac bushes. I could have stood there all day and taken in the fragrance.

All told not at all bad start to my day. I may have age-related macular degeneration and central vision loss but I can still savor chocolate brownies and smell the lilacs. Oh, and they had this great group that does Chicago and Al Jarreau and all sort of music from our youth (assuming you are also on the upward side of 60!) The lead singer is excellent. I enjoyed their performance.

Attitude adjustment. Just like the three most important things in real estate are location, location, location, it appears the three most important things in keeping yourself mentally healthy with AMD are attitude, attitude, attitude.

I found a 2005 study by Jennifer Tolman et al. The study was on psychosocial adaptation to vision loss. Also on adaptation’s relationship to depression. Tolman and her people discovered it really is basically a matter of acceptance and compensation for vision loss. It is the internal experience that really counts. You know: if you believe you can’t, you can’t. If you believe you won’t, you won’t. Ya gotta believe in the possibilities in your life.

Tolman published the Adaptation to Vision Loss Scale (AVL) in her article. It consists of about 24 yes/no questions. Many of them have to do with self and personal power. It is interesting to look through. If you take it and find yourself answering as if you are powerless and/or have lost yourself, you might want to consider getting some help. Depression is a possibility.

Another thing she found related to depression was making use of services and adaptive technology, etc. I see that as a chicken and the egg sort of thing. Services make you less depressed but you have to have the motivation to go look first.

So that is pretty much it. We all have our setbacks. We just cannot wallow too long. Sometimes it is time for an attitude adjustment.

written April 29th, 2017

Continue reading “Attitude Adjustment”

Playing Clue

I really need to learn to keep my mouth shut. Yesterday I said all was quiet. Today I noticed the scotoma aka blind spot in my left eye was much more opaque than I remembered. De-freakin’-lightful. What exactly does THAT mean?

Since it is Sunday evening and not exactly an emergency, I don’t have a way to get an immediate answer. I shot off an email to my local retinologist. Should I panic or is this normal progression of the disease? Everything I have read says scotomas can be light gray, dark gray or black but nothing ever said if there is a progression and/or what that progression might be.

I looked online and it appears this opacity is called density. Maybe. That is what I supposed from reading a whole slew of article titles and descriptions trying to find something that describes what happens to scotomas as the disease progresses. You know full well I did not find such an article.

Really! These are not state secrets! Why can’t someone give us some basic information? They write books on what to expect when you are expecting and what to expect from your two-year old. Why not something on what to expect when you are losing your sight?!?!?

End of current rant. If you have any idea, let us know, ‘k? Sometimes I feel like I am playing a massively involved game of Clue or something. Was it Colonel Mustard in the garden with a pitch fork? Inquiring minds sincerely want to know.

The sad part is the availability of good knowledge in AMD has been a problem for years. I started listening to The First Year: Age-related Macular Degeneration. The book was written in 2006. Guess what HIS first rant was? Doctors who told him nothing. The author, Dan Roberts, did exactly what we did. He went online and found knowledge and comrades for his fight.  Reading his 10 questions that should get answers from the time of the diagnosis, I was happy to see we here are traveling a similar path as Roberts had. Roberts believes people with AMD should be told what to expect and how to find resources and live successfully. Now there is a novel idea! ?

He also has several other topics listed as chapter headings. We have covered a large number of them. Everything from ADA to stem cells and beyond. [Lin/Linda: click here Click here to preview the book.]

I will continue to listen to the book. It is already 11 years old but you never know what I might uncover between its imaginary covers (it is an audio book through BARD, ya know). Probably time for a rewrite….or we could write one ourselves. How do you like that for a scary idea?

So question: what would you want to see in a book on AMD, the life and times of men and women who have it, etc, etc? Might be a project here.

written April 24th, 2017

Continue reading “Playing Clue”

Beautiful Day for a Bike Ride

Today was a beautiful day to go for a bike ride. It was around 65 degrees Fahrenheit and sunny. My husband dropped me off on the other side of those two, pesky, main roads I would need to cross and I toddled around town. Never traveling much more than nine miles an hour, I rode through some sections of town I had not seen in two years. Stopped at the convenience market for an ice cream cup and diet Pepsi and got myself home. Nice and singularly uneventful.

I keep looking for online posts on cycling and keep finding next to nothing. If you want to cycle in tandem – and there is absolutely nothing wrong with that – you can find all sorts of tips. If you want to become a Paralympian, there are posts about that.

There just does not appear to be a cursed thing on slightly aged, recreational cyclists who want to feel the sunshine on their faces, the breeze in their hair, get a little exercise and be masters of their own destiny for an hour or so.

When I say masters of their own destinies I might be being a little melodramatic. However, being able to decide which road you want to go down, how long you want to ride and where you want to stop is delightful! Since I have not been driving, those decisions have been taken away from me. At least riding my bike I can get a little taste of those freedoms back.

This was a grand total of three times I have been cycling this season. I have about 25 miles under my belt. Bluntly put, I don’t have enough experience to offer any recommendations or opinions. I know nothing.

The fact that I am still alive to write this does, however, means it is possible. I can tell you what I did and you can make your own decisions. I will not be held responsible for your death or injuries. Use good judgment.

I started in a close, controlled area. I was first riding in a large parking lot after hours. It was there I realized I could look at the horizon and then see what was directly in front of me. I could also see a number of yards ahead of me. Going only 7 or 8 miles an hour, I was not going to run into anything.

There are a couple of alleys I can go down to get to the Rails-to-Trails path. I have been avoiding the main drags and riding on them as little as possible. Crossing the main road I am now crossing only at the lights. Once I knew I could see things that may be directly in front of me, I scooted down the alley and rode on the rails-to-trails. No motorized vehicles are allowed on those.

Today I rode in some neighborhoods in town. The speed limits are 25 mph on the roads I was on. It was midday and traffic was light. Just the same, I tried to remain very aware of the sights and sounds of traffic movement.

So far so good. Remember this is me, my vision, my town. You with your vision and your town may not be able to go cycling. But then again, maybe you could. It was a beautiful day to go for a bike ride.

written April 17th, 2017

Continue reading “Beautiful Day for a Bike Ride”

There IS Help

I got lots of help from Blindness and Visual Services of Pennsylvania. Lots. Part of the reason for this was I was in the vocational rehabilitation program. They wanted to get me back to work so I could continue to be a tax paying citizen. I shared that goal with them. At least the back to work part. Paying taxes maybe not so much!

People who are not planning on going back to work get a lot less help. According to my low vision special, Pennsylvania has now reduced funding for those clients down to $600 per individual. That does not buy much. My handheld magnifier was $600.

Since the government is, once again, not bending over backwards to help us, where can you go for some basic assistance? It turns out there are several private agencies that stand ready to help.

Again, the disclaimer: these are leads I got off the web. I have not used any of their services and I have not a clue how valid their advertising is. At least two of the three I am mentioning here are run by nationally known organizations. Hopefully that makes them good. Maybe not. If you have familiarity with these programs or others, please let us know.

If you live in Dallas or near to that city you might find some services at the American Foundation for the Blind.  The website advertises all sorts of seminars and community outreach programs. They also advertise an ‘apartment’ called Esther’s Place. Esther’s Place has all of the rooms outfitted with products and appliances either designed or adapted for several, different levels of vision loss. Hands on demonstrations of these things can be arranged.  AFB Dallas also offers help by voice at 214-352-7222 or email at dallas@afb.net.

If you live in Duluth Minnesota try the Lighthouse Center for Vision Loss. The Lighthouse also has an impressive list of services. They have such things as training programs for adjusting to vision loss, independent living and workplace adaptations. They also over free radios for listening to audiobooks and local newspapers. Their onsite low vision store has customer service people to help you with your purchase.  Contact number for the Lighthouse Duluth is 218-624-4828. Email: info@lcfyl.com.

In eastern Pennsylvania there is Center for Vision Loss with offices in the Lehigh Valley as well as Monroe County, my old stompin’ grounds! They advertise a speakers’ bureau as well as escorted transportation. This is in addition to the ‘usual’ services. Their contact numbers are 610-433-6018 and 570-992-7787.

That should give you a start. If you’re located elsewhere in the USA, I would suspect AFB could give you a few leads. Find anything – worthwhile or not – let us know and we will publish your impressions. There is help out there.

Continue reading “There IS Help”

Parts Is Parts

Today was sort of an ‘eye day’. Spent most of my day talking about vision or dealing with my ‘toys’. “Mama said there would be days like this.” [Lin/Linda: I don’t know if Sue intended this but this song came to mind!]

Toys first: my CCTV is broken again.

Apparently when they say portable they don’t mean what I mean: hauled everywhere and set up and torn down twice or three times a day. I lost another pop rivet so my document tray does not slide properly.

Also, my vertical hold comes and goes. Remember Outer Limits? “We will control the horizontal. We will control the vertical.” Whoever is controlling this is not me. It gets flipping enough to make me sea sick!

For future reference should you have this problem, we think it might be a loose wire. When I flipped the camera to distance viewing and brought it back, the flipping stopped.

Needless to say, it is going into the shop. It is going into the shop as soon as I get a loaner; that is…..Oh, and I am not paying the $50 diagnostic fee either. The cursed thing has a two-year warranty.

What can I say? I am hard on parts.

[Lin/Linda: if you were wondering about the title, when I read the above sentence, my mind went to the Wendy’s TV commercial where the catchy line is “parts is parts”.  Click here for the commercial.]

Today was also the vision loss support group. As anticipated, I was the youngest one in the group. I was also the most informed. I am half ashamed to admit that I ‘held court’ and lectured on my toys and some of what I considered to be AMD basics. The ladies – and they were all ladies – seemed receptive and asked me back.

I was a bit disturbed that several of the ladies admitted to owning iPads and having shoved them in a drawer!  They have no background or understanding of computers and they are afraid of them. The lack of knowledge about basic electronics – especially things that can make your life 100 times easier – was scary.

When I said you could get things in the app store I was asked if that was in this town or a town nearby! Oh my….

Which made me think some of you may be in the same boat.

The App Store is a blue and white icon on your desktop. It has a big A right in the middle.

Touch the icon/symbol and you will get a page of whatever apps they are featuring, often games. In the upper right hand corner there is a gray box that says search. Touch that and you should get a keyboard. Type in a keyword or phrase and then touch enter. Examples of keywords might be magnifiers, low vision apps, or knfbreader. Remember many apps are free but some like the knfbreader are for a fee. The ones for a fee you will need an Apple account. Actually, I think you need an account no matter. I always have to put my password in to approve the download. Lin, what do we have about opening an Apple account? [Lin/Linda: I’m posing that information below.]

That is about it for now. I have to email the group leader and remind her about passwords. Next month they are bringing their iPads!

Click here for a good place to start learning about your iPad.

Click here for instructions on how to create an Apple ID.

Click here for the ‘Dummies’ series For Seniors: Use the iPad Online User Guide.  There are also topics on this website about iPhones and Android devices (smartphones & tablets).

Continue reading “Parts Is Parts”

Your Fuzzy Spot

I saw something – right now don’t ask me what; short-term memory could stand a little work – that reminded me about eccentric viewing. Did a bit of web research on that. Thought I would share it.

Eccentric viewing is a way for those of us with central vision loss to see better and to even read better. It involves learning how to use points on the retina to do the jobs your macula normally should do. You may have heard these spots on the retina referred to as preferred reading loci. [Lin/Linda: outside the US you will hear about Steady Eye Strategy which is sometimes described as being the same as eccentric viewing.]

So basically eccentric viewing is looking at the world a bit off-centered. No matter how cock-eyed you may consider yourself, looking at the world cock-eyed takes a bit of practice. We are naturally inclined to put our maculas right on what we want to look at.

Unfortunately, with AMD, that generally means what we want to look at is exactly what blurs out. Time for a new plan. Time for eccentric viewing.

Nancy Parkin- Bashizi published her webinar on eccentric viewing and how to go about learning the skills. She said you should probably consider eccentric viewing if reading is become difficult for you because of your scotoma. Your scotoma is your blind or fuzzy spot. She also said the three steps in learning eccentric viewing are finding your preferred reading locus, learning and practicing how to use your preferred reading locus and learning to hold your eyes still and instead move the paper. Right now I am keeping my gaze fixed slightly above the line, to the right. To read what I have written I scroll the line on the tablet. I don’t change my gaze.

All of this stuff is in the webinar. Nancy spells out a way to find out where your preferred reading loci are. She points out each of your eyes contains a preferred reading locus, but don’t expect them to anywhere near correspond to one another. You did not expect this to be easy; did you?

There are commercial products. There is one called MagnaFlyer for which they want $250. Ouch. Once again I am not recommending this. Remember my favorite price for anything is free. Also, I know nothing about the program. If you have been through this program and want to critique it, let us know.

Those of you in the U.K. may have a leg up on us here in the States. According to WebRN-MacularDegeneration.com and their page on eccentric viewing, your Macular Society is a big proponent of eccentric viewing. The video on this page is very informative. The video also talks about Visibility, an organization that appears to be very active in supporting Glaswegians with vision loss.

There is a list of eccentric viewing trainers in the States pretty much right under the Macular Society info. Could have sworn WebRN-MacularDegeneration was British. Dunno. Also, found dozens of resources on AMD listed as WebRN-MacularDegeneration posts. Maybe another good source of info?

O.k. Gotta go. Way over my 500 words. Bye!

written April 5th, 2017

Continue reading “Your Fuzzy Spot”

Highlight: What foods should I be eating for good eye health?

Nutrition for Good Eye Health – the Basics

Disclaimer

Eye Healthy Nutrients

Click here for a good place to start to learn about aspects of nutrition that have been recommended for good eye health.

 

<–Click on the photo for a larger image.

Click here for more details from AOA (American Optometic Association) about this infographic.

 

 

 

Click here for a printable grocery list.

 

 

 

 

 

 

Diet Plans for Good Eye Health

            • not listed in any particular order; we aren’t making any recommendations & we make no money on the sale of any of the products below.
            • Macular Degeneration Diet and Prevention Plan by Dr. Stuart Richer, OD, PhD, Ocular-Nutrition Laboratory in DVA Medical Center Eye Clinic, North Chicago, IL
            • Eyefoods has a diet plan that you can learn about in their book, on their website, Facebook page or blog
            • Eat For Your Sight Cookbook from the AMDF (American Macular Degeneration Foundation), the cookbook is available here or through amazon.com
            • Mediterranean Diet for eye health
            • Anti-inflammatory Diet
            • Cure AMD, proposed eating plan (based on ‘ancestral diet’) to prevent AMD and reverse it in its early stages.  I’ve corresponded with the author & expressed my concern about his use of the word ‘cure’.  He said he believes so strongly on his research that he could not use any other title.
      • Disclaimer:  We have a standard disclaimer that no one reads ::smile:: so I just want to remind you that we say in it:
        • Any information, books, products or any other materials at My Macular Degeneration  Journal/ey are not intended to treat, diagnose, cure or prevent any disease, disorder or health condition, and is provided for educational purposes only.
        • Always consult your doctor with eye health questions about your specific medical conditions and before starting any diet, exercise, or supplement program.

Go to the Top

Highlight: Where can I find books in formats for people with visual disabilities?

Sources of Books

  • Formats: Braille, large print, e-book and audiobooks; some services for free if you qualify
  • US Library Service provides ‘Talking Books’ in Braille & audio; you need their e-reader
  • US BARD (Braille and Audio Reading Download) also from the US National Library Service; you can read them on an Apple or Android device or app
  • US BARD & BARD Mobile: YouTube video talking about the service
  • US & Canada Sources of large print & Braille reading materials
  • UK RNIB Overdrive: ‘Talking Books’ by digital download
Worldwide
  • Worldwide Kindle e-book readers: which is the right one for people with low vision?
  • Bookshare:
    • US BookShare: 300,000+ titles including all current and recent NY Times bestsellers; free for students, $50/year with $25 setup fee.  Subscriptions are available for organizations.
    • United Kingdom: similar subscriptions to that of the US site
    • India: for subscription prices, check the website
    • Bookshare International/Without Borders for 70 countries; check the website for the countries, available books & cost
  • Daisy (Digital Accessible Information System) offers audio books, magazines & newspapers:
    • DAISY books can be heard on standalone DAISY players, computers using DAISY playback software, mobile phones, and MP3 players (with limited navigation). DAISY books can be distributed on a CD/DVD, memory card or through the Internet.
    • YouTube video shows what their digital books look like
    • Source of Daisy books for Daisy reader, computer, tablet or smartphone
    • At the bottom of this page, there’s a long list of software that plays Daisy books
  • Worldwide Overdrive: borrow e-books & audiobooks from local librarie
  • Many countries of the world BookBub: Free and inexpensive e-books covering many genres
Sue’s pages about books
Did we miss any? Please let us know if we did.

 

Gotta Laugh

  • From optiboard forum: Czech eye joke:
    • Doctor: Can you read this line?  CZWXNQSTACZ
    • Patient: Read it? Of course! I even know the guy!

From funnysigns.net: Eyes examined while you wait.

 

 

 

  • From “Thousands of Jokes”:
    • How did the blind woman pierce her ear?  Answering the stapler
    • How do you make a Venetian blind?  Poke him in the eye
    • How does a blind man drive a car?  One hand on the wheel and the other on the road.
    • Why was the blind man’s leg wet?  His dog was blind too.

Vision loss is serious business. Writing a blog about vision loss is serious business. Being a psychologist and an educator is serious business. I am a serious person…..NOT.

I got the “Oh, you are such an inspiration” comment again. It was very kind of her, but knowing who I really am, I cannot take myself so seriously. Start believing that stuff and I will be demanding white roses and only red M&Ms in my dressing room. (Actually, you can just send me all colors of M&Ms. M&Ms, like people, all have the same good stuff inside?)

You are not supposed to take yourself so seriously. Alcoholics Anonymous says so. It is rule 62. I am not an alcoholic but when I googled don’t take yourself too seriously it popped up as rule 62. How about that!

There are parallels between getting sober and vision loss. Howard Barker wrote how he never believed he would be able to laugh and have fun in sobriety. After all, if you are sober aren’t you supposed to be sober?

Sound familiar? Does the ‘role’ of a visually impaired person leave a lot of room for levity? How can one possibly have fun in that condition?

Barker makes the point that the ability to laugh at yourself makes life more fun. It also makes you more fun to be around. I make the point that life is the funniest thing that will ever happen to you so you might as well laugh and enjoy it.

Barker also makes the point nobody is perfect and it is the quirks and imperfections that make us unique and give texture to our personalities. I agree with him. Now that we have vision loss we may have a few more quirks and imperfections but maybe they just make us more unique and special.

Addictionhope.com stresses all of the positive effects of laughter. Their article on rule 62 talks about the positive effects of laughing at yourself. Laughing at yourself helps to keep things in perspective and reduce stress. As Barker said in his article, you will probably be able to take that perspective and laugh in a year or so, so why not just do it now?

So there you go. Let go of your dignity just a bit. Celebrate your flaws and all of the disasters. The best people do it. Did you see how Pope Francis laughed when that little girl swiped his cap? Rule 62 Continue reading “Gotta Laugh”

First Link on the Chain of Kindness

“From each according to his ability, to each according to his need.” – Karl Marx

I thought that was from the Communist Manifesto. It appears it is not. It is from the Critique of the Gotha Programme…..Huh?….Nope. No clue. I could probably look it up and give you a full critique of the Critique, but that is too much like work and I rather doubt most of you are all that interested.

What made me think of Marx and his quote – other than my mind works in really weird ways! – was a comment Lin made. She said many people in the Facebook group are concerned about their independence.

I was right there with you folks. There are times I am still right there with you. I would love to be able to drive and have all the freedom that brings. However, as my husband pointed out to me the other day, just about the only thing I have given up is driving. I still work. I still exercise. I still socialize. I get the job done with a few new tools and a little help from my community.

Community – Communism. Like I said, my mind works in strange ways.

These days it is not so much I am independent as I am interdependent. Interdependence is the dependence of two or more things or people upon each other. From each according to his ability. To each according to his need. If you think about it, that is exactly the way a community is supposed to work.

The other week I paid for a young lady’s skiing. I wanted to go and she could get me there. Her problem was money. My ride home from school is devout but knows little about the Bible she has started to read. I am not devout, but know more than she about the Testaments. We sometimes do a Bible study on the way home. I need a ride and she wants the information. (Proving the old saying that even the devil can cite Scripture?)

And it does not have to be a direct exchange. Sometimes I ‘pay’ the people doing something for me by doing something for someone else. Passing on the favor is a great way to improve your day as well as the world. You might even want to pay it forward and do something for someone who has never done anything for you just ‘because’.

Start the chain of kindness and be the first link.

Which brings up another thought: I suspect many of you are of a ‘certain age’. I also suspect many of you have done for your community for some time. Don’t forget you just may have a positive balance in your community account. It is alright to occasionally make a withdrawal.

Perhaps what I am saying is, to a certain extent, independence is a delusion. We have all always been interdependent. With a vision loss, you just become more so.

How can you contribute to your community? What do you need from your community? From each according to his ability. To each according to his need. Together it really is possible to maintain lives worth living. Support one another. Take the support you need. Continue reading “First Link on the Chain of Kindness”

Domestic Goddess – Not!

OK.  I own it. Said it before. I have never and will never be a domestic goddess. I have never been a virtuoso in the kitchen. And you know what? I have no serious desire to do so.

I can do basic cooking. Both of my parents were able to make meals we did not mind eating and that kept us fed. My father was the world’s strongest proponent of meat, potatoes and a vegetable.

The first time my mother made spaghetti, we came home from an errand to find Daddy peeling potatoes! Did not matter the pasta was the starch; if you had dinner, you had potatoes!

So, I can boil potatoes. I can also bake them. I can make pot roast and soup and chili con carne and spaghetti with ‘doctored’ meat sauce, but I don’t cook often. Anything you can do in a microwave often becomes dinner.

As I was just microwaving my lunch, I started to think about nutrition. I get school lunches three times a week. Other times, if my body is telling me I need to eat something that will actually NOURISH it, I cook. (Big believer in listening to your body here.) But what about people who cannot do that? What if your vision or another infirmity makes it so you are required to depend on ‘quick and dirty’ for your meals?

First of all, school lunches. I cannot find it, but I could swear that under the government program that distributes ‘extra’ food to schools, there is a stipulation that says the elderly can eat in school cafeterias. Full of canal water? Possibly. If anyone actually knows, let me know. That one is a maybe. [Lin/Linda: I couldn’t find anything like that, sorry.  It’s a good idea!]

Meals on Wheels is an option in most areas. Daddy was not always crazy about the selections they had and the delivery schedule left something to be desired, but the meals were guaranteed balanced and nutritious.

Canada runs their own Meals on Wheels program. The U.K. appears to have something similar in the Meals at Home/Meals on Wheels program.

Then there is the whole slew of microwaveable dinners available at the grocery store. There seems to be a wide range of them with wildly varying food values.

Eat This, Not That! either has stock in Amy’s and Kashi’s or those companies make very good products! Those companies come up a number of times in The 46 Best Frozen Foods in America. Check out the link for the rest of the manufacturers.

In their article 10 Frozen Dinners That Pass the Nutrition Test, NOLA (New Orleans newspaper website) also recommends foods by Kashi, Amy’s Kitchen, and Tandoor Chef. Other companies are Evol, Artisan Bistro, and – names I actually know – Healthy Choices, Lean Cuisine and Weight Watchers.

Most of what was recommended is decidedly not meat, potatoes and a vegetable. Daddy would look askance at more than several of the choices suggested. However, if your tastes are different from what my father’s were I would suspect you can find two or three that you can eat.

Decent nutrition even a few times a week is better than none at all.

P.S. If you are looking for breakfast cereal, Cheerios and Total come in 9 and 10 in a listing by Greatist!.  Of the 20 Cereals That Are Actually Healthy, the top three were made by Barbara’s. This may a Canadian company although there are distribution centers in California and Kentucky. All I know about them is what I have read online. Continue reading “Domestic Goddess – Not!”

Hike and Bike

Morning! I thought I was getting my routine back but I apparently was not totally accurate. I will be able to be in my exercise routine for a week – 7 days – and then it falls apart again. The Y is closed next Saturday for spring cleaning! Grrrrrrrrrr!!!!!!!!!

Maybe I can talk my husband into loading me and the bike into the car and taking me to a local rails to trails. Assuming they are all over the US but for our international readers, the United States made the (foolish) decision to send much, if not most, of the goods and people transported in the country by trucks and private cars. That left thousands of miles of abandoned rail beds. Many of them are being turned into walking and biking trails. Since there is no motorized traffic allowed on them and very few crossings, they make good places for low vision folks to exercise.

According to the website there are almost 23,000 miles of rails to trails in the country. I would be surprised, if you are in the USA, if you were located very far from one of those. There are four, two of them quite long, within 45 minutes of my house.

The two shorter ones are going to be connected soon. There are efforts to connect sections of trail all over. Or at least that is my understanding. That means people will actually be able to do bike trips of several days long if they wish, and they can do them on safe, easy riding trails.

Or, they can go out and back on a two-mile trail like I have generally done. However, in my own defense, that was when I had good vision and I could ride my bike almost three miles to get there.?

My biking goal for the summer is to get someone – anyone! – to take me to the D&L (Delaware and Lackawanna, my grandfather was an engineer for them) trail. The section I have ridden and intend to do again is 26 miles long and goes from White Haven to Jim Thorpe.

26 miles sounds impressive, but it is not as bad as you may think. This section of trail is almost totally a 1% downhill grade and an easy ride. That is a good thing about rail beds. Often with only one engine and upwards to 100 cars, you did not want to be going up or down hills much steeper than that. Most of the rail beds, in Pennsylvania at least, have very easy slopes. (Slope is rise over run; remember?)

Canada has the Great Trail. I know nothing about it except the website says it is extremely long, 24,000 km which translates to approximately 14,600 miles. Sort of sounds like the AT on steroids. Check out the section you might be interested in for accessibility data.

The AT, Appalachian Trail, approximately 2,000 miles, Maine to Georgia. The section I know is a true ankle breaker and I would not recommend it for people who cannot see their feet. To prove my point? A blind man who hiked the AT was written up in extreme sports magazines! That was Trevor Thomas. He hiked the AT in 2008.

He was not the first, though. Bill Irwin, also blind, hiked the trail in 1990.    [Lin/Linda: Here’s a YouTube video from behind the scenes of the movie about this called ‘Blind Courage’ which is to be released in 2017.  Click here to get the book that he wrote called Blind Courage – it’s available as a Kindle e-book or through his website link.]

That said, there are easier sections. Check out your local section online or talk to a local hiker. A little research, a few modifications and my guess is you can get out and enjoy. Have fun! Continue reading “Hike and Bike”

Eating Our Way Around the Globe

Hi. I have walked the dog, dusted the house, done the laundry and watered the plants. Plus a few other things like washing dishes. Twice. I even had a good lunch. OK, it was fish sticks but I had a piece of sweet potato and peas, too. Better than yesterday. That was popcorn. I think I deserve a break.

Lin is going to shoot me. Pretty much all I have done this weekend is write?. More for her to edit! [Lin/Linda here: it’s a good thing I love you, dear.  ::smile::]

But housework bores me! I got thinking about Summer. Thinking about vacation. We will probably put off our ‘big’ vacation until Fall, but we could still do a few small things this Summer. Where do the in-the-know low vision people go?

‘Big Jim’, whomever that might be, put together a nice list of options. First one on the list in 20 Best Summer Vacations for Blind People was skiing! That was a bit of a surprise. Especially since he was supposed to be talking about SUMMER vacation. He also suggested mountain biking on tandem bikes and zip lines. Big Jim sounds like an action adventure guy.

For those who are seeking a more sedate pastime he suggested things like music and food festivals. Also wine tasting and day spas. I could probably handle those, too.

Big Jim also suggested theme parks. If you ‘own’ a child or have the capability of ‘renting’ one, Legoland was a recommendation. [Lin/Linda: I thought it interesting that it says “However, to keep out the nerds the park requires all adults to be accompanying a child.” Sue, you being a child at heart won’t work here! ::smile::] When I looked it up I discovered there are 17 Legolands including ones in Tokyo and Istanbul. The websites have accessibility information for the physically handicapped but not for visual impairment. Looks like a lot of cool rides and activities, though!

Disney World was on the list. Leave it to Disney to have actually done some special things for guests with low vision. If you go to their guest services page, you will see Disney offers at least three accommodations. These are audio description devices, Braille guidebooks and stationary, Braille maps.

Service dogs in harness or on a leash are welcome. Hey, Fido, where are you going after guide dog school? I’m going to Disney!

There are 12, specialized guest services locations scattered around the park. These are especially for us low vision people! I have no clue what other specialized services they may offer but it is nice to be considered.

Check out the list Big Jim compiled. Our big trip in the fall will probably be a cruise. Cruises are on the list. However a friend has already promised to take me to another local, blues festival and I keep eyeing the New York International Food Festival. I could get there by bus. Who wants to meet me? We can eat our way around the globe! Continue reading “Eating Our Way Around the Globe”

Stop & Smell the Roses

Hello again. I am facing a transportation crisis. My ride to the Y on Saturdays is taking six months to train as a yoga instructor. Six months of Saturdays she won’t be going where I am going. Sigh.

I do not begrudge her her dream. She will make a great instructor. Just a minor inconvenience but I have started to assess my resources. I have started to network and reach out. You don’t know if you don’t ask. What can they do? Say no? Big whoop.

I was asking about posting a sign or something, asking the girl at the desk. A woman I had never seen before joined the conversation. She comes past my house on the way to the Y. She had just started Zumba and exercise in general. Being responsible for me would get her to class. She was going away for a few weeks but she might be able to give me a ride when she got back. I could live with that.

Moral of the story? a) You don’t know if you don’t ask. b) There are a lot of good people out there. c) God works in mysterious ways. d) All of the above.

Moving right along. This morning yoga class started with the reading of a commentary on a stunt the Washington Post pulled in 2007. The Post put Josh Bell, a violin virtuoso playing one of the finest violins in existence (crafted in 1713 by, of course, Stradivarius), in a subway station and asked him to play Mozart. This is a man who packs concert halls around the world. His violin is priceless.

The statistics from this little adventure were as follows: 1,097 people passed by. 7 stopped for more than one minute. Bell made $32 and change.

The commentary and articles I found alluded to Matthew 7:6, “do not throw pearls before swine”. I would prefer to think that is not an accurate application of the Scripture. I do not believe we are all so brutish the finer things are wasted on us. I would prefer to think many people, as I often am, are just too taken up with day-to-day life to even notice the extraordinary let alone stop and take it in.

While no one enjoys sensory loss, having low vision may actually give some of us time to stop and listen to the Josh Bells of the world. We might now have fewer responsibilities and more time to be mindful, more time to be in the here and now.

How many extraordinary things do we ignore because we are ruminating over something that happened yesterday or that we are worried about happening tomorrow? My father would call it stopping to smell the roses and he always told me I needed to do more of it.

I cannot honestly say I am mindful of the extraordinary. I would like to think that should I find a Stradivarius being played in a subway, I would kneel down in awe and reverence. However, I am realistic to know that is a bit far fetched. I would probably be one of those thousand plus people running for my train. Not exactly proud of that.

How about you? Continue reading “Stop & Smell the Roses”

Puppies!!!

To quote a very famous dog, Scooby Doo, “ Cookies!”

For those of you who don’t know, internet cookies are essentially little messages your computer sends the web. Since they are based on your viewing habits, companies that sell things of potential interest to you can follow them back like bread crumbs. Cookies are why when you buy something or research something all of the ads on your page are suddenly for similar products.

It would appear companies are now picking up on my doing a lot of vision related searches. I believe they are a bit slow on the uptake considering I have been researching vision loss for over a year and a half but what the hey.

Maybe the birds ate my cookies. After all, that is what happened to Hansel and Gretel.

The specific company that has caught up with me today is IBM. IBM is not what you think of first when you think low vision but apparently they have been collaborating with Guiding Eyes for the Blind. I might not have read the article but they picture six, utterly adorable Labrador Retriever puppies. Be still my heart. I would probably walk across hot coals if a puppy were on the other side. I read the article….and watched the video.

The article is about how IBM has been helping Guiding Eyes for the Blind become more efficient. They were washing out something like 70% of their pups. This was even sometimes at the end of a 20 month training period that cost up to $50,000. Yikes. IBM, through their Watson software, reduced this wash out rate 20%. They analyzed years of data to match trainers to pups. Even with dogs some teacher/student pairings work better than others.

That was about it for that article, but all of you dog freaks should look at the video of those adorable, adorable pups. If you can, also look for the Today Show videos on YouTube. Did not know this but the Today Show has been featuring Puppy with a Purpose. Some of these pups are to become guide dogs and other will become service dogs. Either way, they are, once again, adorable. Eye candy for passionately puppy people, like me.

There is no way I could raise a pup and give it up at the end of the year. My dog and I would be sneaking across the border to Canada in the dead of night.

Likewise I am a softie as a puppy Mommy so I would not have what it takes to have a working dog. She would spend her days on her Perfect Sleeper just like Beastie Baby.

However, should you be willing to either raise service pups or be in need of a service dog, there are places to inquire. Do I know what they are? Nope. I will leave that to my highly competent editor and fellow puppy adorer. Lin! Help! [Lin/Linda: I’m here! In the US, the best place to start is with the National Service Animal Registry.  In the UK & Ireland, Europe, Australia & New Zealand and Asia, it’s Assistance Dogs International.]

Continue reading “Puppies!!!”

Get Your Magazines

Not quite sure what I did with myself before I had an iPad. After making pancakes for breakfast, playing in the snow and helping my husband dig out – again – I went searching online. One thing I discovered was this: I love National Geographic magazine more than I thought I did.

The reason is pretty simple. Being at loose ends, I had rummaged through a pile of magazines and wished it were easier to actually READ them. Just for crap and giggles, I went online and discovered National Geographic print magazine subscribers get FREE digital access. Yippee!

It was fairly easy. I went to the support center and typed my question. What came up was a question from a subscriber asking how he could read more than one article online at a time. The site gave two ‘click here’s. One was USA and Canada and the other one was the rest of you guys.

They ask for your mailing address and your email address. They also ask for the subscription number. The subscription number is on the address card that comes with the magazine. It is the number directly above your name. You create a password and you are in. Easy peasy.

The site does zoom. Score! Once it was zoomed in I had some problems scrolling and also had some incidents of the ever delightful flying off the page, but all in all, not too bad. Better than not having Nat Geo. The photos are even better on the iPad if that could be possible. Also, no more nasty glare from the glossy paper reflecting the light on the CCTV.

I started searching for other magazines that offer the same service but did not have a lot of luck. My other subscriptions are Nat Geo Traveler and Reader’s Digest. Traveler would be assumed to have the same offer because it is a Nat Geo product. Maybe. Didn’t actually check. Reader’s Digest did not seem to have the same service. Pooh. At least I could not find it and that one I did look.  [Lin/Linda:  A Reader’s Digest subscription does give you both print and digital version. With National Geographic Traveler, you can get a digital only subscription or print only or both.]

Reader’s Digest disturbed me even more when I discovered they are not available for free on BARD. Both Nat Geo and Nat Geo Traveler are represented in audio format. Good people the National Geographic Society.

If you are able to get BARD and like magazines, check out the listing. There are several dozen there. They are not necessarily right up to date but pretty close. I found February, 2017 and this is mid-March.

BARD has Playboy in audio. Apparently there are guys out there who really do get the magazine for the articles. ?

Better yet, they also have Playboy in BRAILLE! I do not want to know what that is all about! My imagination is running away from me as it is!

If you subscribe to a print magazine and would like online access, check it out and let us know how you make out. There are certainly others that offer free access online. Continue reading “Get Your Magazines”

This Mortal Coil

Good natured teasing, I have always believed, is a sign of affection. Therefore I did not get upset when people in yoga laughed and said I want to keep up with the 20 year olds in class. Besides, it was true. I do want to keep up with the 20 year olds! (Actually, I can outperform some of the 20 year olds, but in those cases, it is their issues and not my ‘talent’ that are causing the situation. I find that very sad.)

I am not sure if I have ever acted my age. I know that right now, at 63, I don’t want to act my age. I don’t want to act my age, or perhaps more precisely act like a 63-year-old woman with a visual impairment, because I don’t like the stereotype. The stereotype says we are a bunch of stick-in-the-muds who have no fun! Also, we are helpless and lacking in many skill areas.

Seriously. Think of what people think older folks can do. Then think about what people believe the visually impaired can do. Not much, right? I do not want to be limited like that. Time to bash some stereotypes.

Not only does thinking you have to be the ‘proper’ senior with vision loss interfere with living, it also interferes with LIVING, as in how long you “shuffle around this mortal coil” (The Bard again in Hamlet should you be curious). Younger thinking people live longer.

Really. University College, London ran a study that showed more people who thought they were three or more years younger than their ages were alive after a few years than people who thought they were older than their age were.

Now, granted, the article did not say why people may feel older than their years. It may be there were diseases making them feel older. I am assuming since University College is a respected institution they know how to run a study and control for such confounding variables. I am going to assume it was a well-designed study and take their findings at face value. Why? Because they serve my purposes, of course!

Dr. Sharon Horesh-Bergquist has done a study that found internalizing ‘ageism’ notions is bad for your health. The way you think of aging will influence how you age. If you believe all those stereotypes about old folks, you will age poorly.

In another study, people in Ohio who were proud of their ages and thought they were useful and happy lived 7.5 years longer than their pessimistic peers. I would take that. Better than the alternative.

So there really is such a thing as a self-fulfilling prophecy when it comes to aging, disability and, yes, even death. Believe you are no longer competent and able to engage in life and that is exactly what will happen.

Which brings us to the thought questions: how have you changed since your vision loss? What have you given up since your vision loss? What do you no longer do ? And now the kicker: what have you given up solely because old, low vision people don’t do things like that?

Continue reading “This Mortal Coil”

Funny Glasses

Hi! In real-time welcome to March, 2017. It came in like a lamb. Very mild. I have heard the robins calling although I have yet to see one. Does not mean the end of Winter, of course. I dug a robin out of a snow pile one year. Bird hypothermia.

If anyone is keeping track, the washer is done, kaput, dead. We could resurrect it for $400 or buy a new one for around the same price….yep. Going shopping after work on Friday.

The repair man said I should have run the clean washer cycle regularly. He said I should have known that from reading the manual. Read the manual? What planet is he from? Does anyone actually read the manual?

And to segue off from that, I have been reading about eSight glasses these past few days. A couple of pieces on them have been in the media. People keep giving me the articles and suggesting I look into buying a pair. For $10,000.

My friend who – bless her – cares about my welfare and has so far thought both the Argus 2 and statins would be just the ticket for me, said I should not worry about the money because the eSight glasses could give me my independence back and allow me to drive again. Wrong. No, no, no.  Although later reading I have done confirmed what she said about the image focusing on my intact section of retina, that same reading also confirmed what I said. To wit, the glasses use magnification as well. Magnification screws up your perception of distance and of speed.

You cannot use magnification and drive. Very often you cannot even use magnification and walk fast. Long paragraph short? Do not buy the eSight glasses and think you can drive. Not happening.

Otherwise, though, they sound promising. American Federation for the Blind did an article on eSight glasses, along with Smart Glasses, for the AccessWorld magazine. The eSight glasses magnify up to 14x. You can make color and contrast adjustments. You can also determine if what the camera is picking up should take up the entire display or just a part.

I refer you to the AccessWorld article for more information. The newspaper article on the glasses was for the Associated Press and written by Michael Liedtke.  The online article I was given was entitled High-tech Glasses are Helping Blind People See.

Of course, unless you have discretionary funds coming out of your ears, $10,000 is quite a bit to spend on a pair of funny glasses. While the price has been coming down, the burden of cost remains all on the consumer. Insurances pay nothing.

A possible loophole I found is clinical trials. eSight has already done one clinical study with the results due out this spring. If the company decides to do more studies, they will need test subjects and test subjects will be given glasses. Are you following my devious, little mind? Some of us may be able to get free glasses in return for being in the study. Not sure it is even remotely possible, but if you are interested, check it out.

So, that’s that. Who wants to be in the Geordi LaForge look-alike contest?!? Continue reading “Funny Glasses”

Special Favors

This evening I am staying home. It is normally a Zumba night. Did I want to go? Absolutely! Still I turned down a ride. Why? Because she would have had to make a special trip to get me.

I am really struggling with this. Every fiber of my being wanted to go to class. My ride volunteered, but she was already at the gym and would have had to leave, pick me up and go back there. So I turned her down.

Some people don’t have a problem with asking for and taking special favors. My ride home from school is a club advisor. Tonight we took a student home. Five miles in the wrong direction. Wasn’t the first time. My friend felt used. I don’t want people to feel used.

So where is the line between a doable favor and a burden? Where is the line over which people feel used? I looked online and found page after page of sites telling you how not to be used. How about a site that tells you what is an acceptable request and what is going over the line? How about a site that tells you how not to be a user?

With rides I try very hard to make sure they are going my way to begin with. My usual rides home from school both live within a mile of our house. To me that is not excessive. Is it?

I try not to lean on any, one person too much. My maximum burden for anyone is three trips a week. Most of those three times include a there and back combination. Is that too much?

Where is the etiquette book on this????? Etiquette says to do as much as you can to ease the burden. I try. I am always ready on time. I wait at the bottom of the driveway. It says to consider your task and the person you are asking. How is that match? Usually good because they are going to the same place.

I am thinking I need something a whole lot firmer than what I have. People are fantastic and I want them to keep being fantastic. Yes, there is self-interest here, but I also want them to not be inconvenienced either. Neither of those things will happen if I over use people or take advantage of their generosity.

‘Tis a dilemma, so I am throwing it out for discussion. What is too big of a favor? When should you not ask? When should you refuse an offer? What are the rules on this???????? Continue reading “Special Favors”

Our Mission

Just got a comment via email. It was enough to make me blush and puff with pride…then wonder how the hell I am going to live up to all that!!! My heavens! Thank you!

Then I started wondering about ‘mission’. Ever been part of a committee writing a mission statement? Don’t be! They are killers. Still, every endeavor should have some goals; right?

Today I was waiting for sixth grade to come in from recess. One of ‘my’ kids, a lovely young lady, stopped to tell me she had seen me in my glasses. She meant the telescopic ones I use to do classroom observations.

I started to think what my being in school was doing for – or maybe to! – our kids. What I came up with is I am helping them to be comfortable with the visually impaired. I am helping them to normalize vision loss.

In sociology normalization process theory relates to the social processes by which new ways of thinking, working and organizing become routinely incorporated in everyday life. In my case it does not mean to make the different into ‘normal’ people (in my case, I believe that may not be possible!?) but instead to allow others to see us as just part of normal life.

I get a kick out of the acceptance and ‘ownership’ the students have of my vision loss. The other week a new student asked if I had virtual reality glasses! Not hardly. I stopped to give him the Cliff Notes version of the talk on my assistive technology. A couple of his classmates joined in and helped me explain the situation! For them, it is pretty routine.

If I had to define our ‘mission’ here, I would have to say part of it needs to be normalization of vision loss. Acceptance. Not complacency with avoidable blindness or an attitude of throwing up your hands in the face of unavoidable blindness. We cannot stop fighting vision loss and say it is inevitable. Instead I would like to see us work towards a more generalized acceptance and understanding that there are millions of us and we can and should be part of the community. The more we get out there, the more we will be part of the social landscape. As we adjust to our vision loss within our society, society can adjust to us.

So that is my thought on one destination for this journey we are on. Normalization of low vision in a community. How can we get low vision out of the closet?

The person who wrote that lovely email talked about being more open with people about her vision loss. She also talked about starting a local support group! I am thrilled! One person can make a difference.

And if one person can make a difference, what can an online community – physically spread out across the globe (I still find that a wild concept to wrap my head around!) – do together/separately?

What is your mission? Continue reading “Our Mission”

Full of Lint

Earlier in the week I offered a housekeeping tip. I actually have another one! Make sure the vent for your dryer has been cleaned.

The clothes washer has not been working properly, won’t spin, but even taking that into account, the dryer seemed to be taking forever. The one thing I know we can do for ourselves is clean the vent hose so I asked my husband to do it.

It was sort of full of lint. We all know that that is another invitation for a fire, not to mention a lot of wasted electricity and money from long drying times. Time flies when you are older and it just may be your dryer vent hose has not been cleaned within the recommended year (even though you could swear you did it last week!).

Do me – and yourself – a favor and clean the vent hose. Fires are bad for anyone but a fire and low vision could be nasty.

That, however, does not solve the problem of the washer that will not spin. That will require a repairman. Hopefully it won’t require a new washer.

Which got me to thinking: is there a way to get free appliance repair for those who are low vision or blind? Did not find that but – glory be! – I found a possible way to get free replacement appliances!

The Low Income Energy Assistance Program (LIHEAP) is allowed to replace your appliances. This is not guaranteed because all of the money comes out of the same pot and is often spent on things like home heating, but if you need an energy efficient refrigerator or washer, it would not hurt to inquire.

Qualifications are pretty much what you would expect. You can not earn more than 150% of the poverty level or more than 60% of your state’s median income level. In other words, a pretty low income is required.

Other than replace energy-hog appliances, LIHEAP helps people with energy bills and weatherization. The whole idea is to reduce the amount of income that is spent on energy in the home.

Now, obviously I would not qualify. I will have to get my washer repaired on my own dime. However, those of you who are living on limited incomes may wish to call 1-866-674-6327 and inquire about the program. This number belongs to the National Energy Assistance Referral project and it is manned from 7 a.m. until 5 p.m. mountain time. That would be 9 to 7 eastern time, 8 to 6 central and 6 to 4 Pacific time. Any other time zone? You are on your own.

Hopefully that nugget of information will give you one other possible resource for getting through this AMD mess and all the not so little messes that may have come along with it. Disabled and “of a certain age” too frequently go along with low income in America. Anything that can make the financial struggle a little easier can be a good thing.

Me? I call your friendly, neighborhood appliance repairman first thing Monday. I have laundry to do. Continue reading “Full of Lint”

Tax Time

In real time March is only five days away. Wow. Winter is going fast. It has also been freakishly mild. I suspect March will come in like a lamb meaning it should go out like a lion. Maybe that will mean at least one more opportunity to cross country ski at the park. Maybe not. Probably just wind and cold rain. Phooey.

March 7th is going to be another first year milestone. March 7, 2016 was my first day back at school. Soon I will have been an employed, low vision person for a whole year! This time last year I was not sure it was possible.

Sometimes we just have to practice what we preach. I told a little guy today I never get angry at my students for getting a wrong answer, but I could promise him I would be angry if he did not try. No matter what the outcome, we all have to try. That includes the big people.

The beginning of March also tells me I need to get it in gear and get my stuff together for the accountant. It’s tax time!

The United States and many other countries – I just found information on Ireland; perfect for the month of St. Patrick’s Day – have special tax breaks for the blind. In the USA you qualify if you have a field of vision of 20 degrees or less or if you have 20/200 vision or less with best correction. In Ireland people qualify if they have 6/60  central visual acuity in the better eye with best correction or a visual field of 20 degrees of arc or less. They sound similar but you should check and see what the rules are where you are.

Remember the American law allows you to deduct what you spend to prevent, diagnose or treat an illness or medical condition. That includes costs related to your blindness or visual impairment. Disability associated items include all sorts of things. For example, they include feeding and grooming your guide dog! Same in Ireland as long as you have a certificate from the Irish Guide Dog Association.

Hold on to your certificate once you claim because the Irish tax people can ask for it any time over the following six years. Also in Ireland you can get the VAT (value added tax) refunded on purchases of aids and appliances. Hold on to those receipts, too.

In Tax Tips for the Blind, the TurboTax people say that even if you do not make enough that you are required to file, you can get a ‘hefty refund’ in the form of earned income tax credits.  Do I know enough to explain that? Absolutely not.

Which is the reason that again this year we want to remind you there are qualified professions – or soon to be professionals – available to help you with your taxes. The InFernal Revenue System (auto correct is no fun! I tried three times to write ‘infernal’ and it would not let me! I kept getting ‘internal’ ::grin::) offers links to Volunteer Income Tax Assistance and Tax Counseling for the Elderly.

Ireland? Wish I could have found something for you but my search engine was not cooperative. I would suspect that calling the local tax office would get you some info. Let us know. Maybe we can use the information. You do know, I assume, that here in America, on St. Patrick’s Day, EVERYONE is Irish! Just don’t ask us to file there, too!

Lin/Linda here: The RNIB in the UK offers free tax advice, click here for more information.  I don’t know if this applies to Ireland or not.  There is a branch of the RNIB for Northern Ireland, click here for more information. I don’t know if they have similar services but you could check.

Continue reading “Tax Time”

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