macular degeneration, macular, diagnosis low vision rehabilitation – My Macular Degeneration Journey/Journal

Sue on Assignment: Money for Assistive Technology – page 1

It has been a little over two years since I started using technology for low vision. I wrote page after page about my “toys” and how they were making my life better. [Lin/Linda here: her last update about what she uses on a daily basis is Sue’s Toolkit – 2 Years Later.]

I remember one reader made a comment along the lines of this: I was wealthy and could afford to buy myself thousands of dollars of equipment. He wanted to know what I thought someone with few resources was supposed to do.

To begin with, I am not wealthy. I am a professional, and we are probably slightly above average for the middle class. Second point, except for replacements (a lot of technology does not bounce when it is dropped. More’s the pity!) and repairs, I have paid nothing for my equipment! That is nada, goose egg, a big, fat zero.

I have said it repeatedly: everything was purchased for me by the Bureau of Blindness and Visual Services. They are a branch of the Office of Vocational Rehabilitation in Pennsylvania. And that can be a problem. I was young enough, loved my job and desperately wanted to go back to work. The agency was willing to pay several – probably more than several, actually – thousand dollars to keep me paying taxes and off of the disability rolls. [Check out Sue’s page Salvation: Vision Rehabilitation Revisited.]

Great for me. Not so great for those of us who are older, retired and have no capability or inclination to go back to work. Our state BBVS will pay, last I heard, about $600 for equipment and services for those people. That will buy maybe 1/6th of a CCTV. Now what?

First of all, I would suggest pursuing help from a state agency anyway. $600 is $600. Second point: I borrowed two CCTVs from our county library while mine was in the shop. The ones I borrowed were shoved in a corner and never used. A library card and a gratitude donation got me out of a fix. You may be able to make a similar deal.

Quite a while ago I ran a page on an assistive technology reseller. Some states have agency-run “swap meets.” Donate what you can no longer use and take what you need. Free. I think the best one I found was Massachusetts.

Sam of the Blind Life reported some of his clients found used technology at yard sales. He also suggested keeping an eye on eBay and in pawn shops. [Check out Sam’s video Why is Assistive Technology So Expensive?]

Other options? Enhanced Vision has a site that lists grant sources for assistive technology all across the country. Not only do they list many of the state-sponsored grants, but they also list several private organizations that will pay for part of the cost of the equipment. I will go to some of these sites and see what I find out.

…hmmmm, just had a thought. Enhanced Vision sells adaptive equipment. Yes? Yes. If you find something they sell that you really want and cannot afford, would they suggest a funding source? Just a thought. Somebody want to try?

Ok. Sue, Girl Detective, on the case. See what I can find…and whatever happened to Nancy Drew, anyway?

Written September 21, 2018

Next: Sue on Assignment: Money for Assistive Technology – page 2

Go back to the list of “On Assignment” pages

Salvation: Vision Rehabilitation Revisited – 2018

Salvation comes in many forms. Mine came in the guise of a state agency called the Bureau of Blindness and Visual Services (BBVS).

I had worked in special education for over 35 years when I developed AMD. I had a good working knowledge of what they offered. I never ever thought I would be a client but fate often has plans we cannot predict.

There is a pile of research out there concluding the best adjustments are made by those who learn skills. Depression and hopelessness are lessened in those who can do their own, basic living tasks. Agencies like Blindness and Visual Services are where you get your skills

I had a case manager who helped me coordinate my services. He lined up the tech guy as well as the habilitation lady and the orientation and mobility guy.

Technology for the blind and visually impaired is fantastic. With the tech guy’s assistance, I learned how to use a CCTV and ZoomText. With the help of the habilitation person, I learned about apps for my iPad. There are things available that were impossible to imagine 20 years ago.

The habilitation person also taught me about contrast, UV sunglasses, and several other things. She helped to initiate me into my new “fraternity”, the brotherhood of the visually impaired.

O&M (Orientation & Mobility) training was a bit amusing I wanted to cross the street with my bicycle. The O & M guy brought me a white cane! We ended up compromising and worked on both.

Two and a half years later, I use much of what I was taught. A lot of it is used daily. It was this training that taught me how to get through a day. It was this training that allowed me to return to work. It was this training that saved my sanity…such as it is! This training was my salvation.

Here at Mymacularjournal.com we have tried to pass on much of what these fine people taught me. We hope you have been able to profit from some of it.

The future? No crystal ball here but if I had to predict from the natural history of this disease, I have not reached the bottom yet. There will be losses to adapt to, work around, what have you. I will return to Blindness and Visual Services for more assistance. Maybe even a little extra salvation. Salvation comes in many forms. This agency was mine.

Written September 14th, 2018

Finding Low Vision Rehabilitation
  • One way is to ask your retinal specialist for a referral.
  • In the US and Canada, click here for a searchable database. Not only can you find low vision rehabilitation, but there are other categories for your search as well.
  • Worldwide, click here for International Agencies, Centers, Organizations, and Societies.
  • There are other sources as well.  Do a search for ‘low vision rehabilitation’ with your city and country name.

Next: Salvation: DBT Revisited – 2018

ChaChaChanges

Good morning. I don’t have to be anywhere until 10 this morning so I thought I could write a bit first.

First of all, I put something light-colored at the bottom of the steps. I need to get a nice rug but at the moment what I put there will do. I decided it was better to ‘turn my mind’ towards acceptance rather than turn an ankle as I nearly did the other day when I missed that last step. The contrast – just like my Vision Rehabilitation Therapist (VRT) said – helps me to see there is a change there. In this case the change is from the step to the floor, but it could be anything.

My VRT also suggested I put a white sheet of paper on my dark table at work. I am supposed to put anything dark – like my pens or my stopwatch – on the white sheet of paper. That way I will be able to find things I have put on the table a lot easier.

Tip 1: To provide contrast where there is a dark background, I put down a light-colored rug so I don’t miss the last step.  To provide contrast on my dark-colored table at work, I’ll put down a white sheet of paper where I will put anything dark so I can find things easier.

Another thing the VRT suggested was ‘dots’. I saw these when I was looking through the visually impaired section at Amazon but I had no clue what they were. Apparently these dots are to place on things to get you oriented. The VRT said I could put them on the number pad for the microwave. Really anyway I would want to do it. Maybe a different color one each on the 1, 2 and 3 so that I would know where they were and then go down the columns from there. I don’t know about you, but when I first got ‘bad’ (‘bad’ being a relative term, of course), I incinerated a fair amount of stuff. These would have been helpful then and I suspect I will find a use for them in the future.

Click here to see an example of ‘bump dots’.  You can get them in various colors and there are ones that are clear, too.

Tip 2: Get some ‘dots’ on anything that requires you to orient yourself. For example, I might get different colored dots to put on the numbers 1, 2, 3 on the microwave pad so I would know where I was & can go down the column of numbers from there.

Another thing she suggested was something we teach intellectually disabled students at school. It probably has a real name but I just call it the “1 plus” method. You put something in the microwave for one minute and then check it. If it is not hot enough, you put it in for another minute. It may get a little tedious but it can save on the grocery bill by keeping things from being burnt.

Tip 3: To avoid burning things in the microwave, I can use the ‘1 plus’ method which is to put something in the microwave for one minute and then check it.  If it is not hot enough, you put it in for another minute.

My VRT wanted to give me a bunch of other stuff for getting around the house and doing the – gasp – domestic goddess routine, but since a) domestic goddess I am not and b) I am still able to do just about everything I need to do anyway, I asked her to hold off on that discussion until later. She said that her services would be available again as needed. Good to know.

Oh, one more thing, my VRT told me about a ‘pin code’. Telling me if the colors match has become a job for my husband but if you don’t have a handy person to make the call, my VRT suggested you get a consensus on whether something is black or navy and then ‘pin it’. She suggested one vertical and one horizontal but I suspect you could pin one right leg, one left or however you wanted to.

Tip 4:  Since it’s harder now for me to tell if colors match, I can ask my husband to tell me if a piece of clothing is black or navy and I can ‘pin it’ by putting a pin in horizontally if it is black and vertically if it is navy. Or you could pin the right leg if something is black and the left leg if something is navy.

That’s about it for now. Have a good day!

Ps She gave me pens that won’t bleed through the paper (on a previous page, I had mentioned I’d been looking for some) but all they say on them is BVS. We don’t know the manufacturer but we are still trying to find out.

Click here for more tips on how to adapt your home.

Written March 2016.  Reviewed September 2018.

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