Behind the Wheel: Part 2

continued from Behind the Wheel: Part 1

In talking about why Yvonne drove after three years, she mentioned independence. Speaking personally, I would love the freedom of driving. The shared ride service here is a pain. The other night I was picked up at the Y and had to ride along to a local restaurant. We waited half an hour for the second passenger to get his ‘stuff’ together and get it on the road.

You have heard me scream plenty about rolling out of bed at the crack of dawn to get 10 miles down the road ‘only’ an hour early.

Unfortunately, shared rides come with many indignities and inconveniences.

Right now I have started ‘jonesing’ for a chocolate milkshake. The drive-in restaurant is only a mile away but it is on the other side of a busy road. I’m thinking that trying to get across that road for a milkshake – even a large! – may not be a good idea. Shared rides and going by foot may not leave a lot of room for spontaneity, either. (Yes, I do have a husband. He is dieting!)

I would love the freedom of driving. After all, this is the woman who renewed her license so she could feel like a big girl! But I don’t drive. The eyes in this head are too far gone.

Yvonne did her homework. Good idea. I did my homework for my bike riding. I know my routes pretty well. Today the Children’s Museum next to the Y had a street fair. The road was blocked. Detour ahead! On my bike, I just dismounted and walked through the fair. In a car, I would have been rerouted to a road I rarely travel. Things happen. The best laid plans of mice and men and all that. You cannot always count on doing what you planned to do.

Yvonne mentioned problems with family members using the car, not transporting her and not doing basic maintenance. Without the family members she is on her own. Maintenance? I used the same garage for nearly 40 years. I think if I asked, they would have come for me. I find it is always good to inquire. You don’t know what people will do for you until you ask.

My license has not been pulled. A few weeks back I went and had it renewed. No one questioned me. No one threw me behind bars. I can legally drive but I don’t.

Many states are not good about making sure people who should not drive don’t. And even if they pull licenses, the roads are full of unlicensed drivers anyway. Driving or not driving is the decision each of us must make for himself.

Would I ever drive? Perhaps. With a very sick husband or a very sick dog or if I had fewer resources, perhaps. I have said it before: I am blessed with resources. What would I do if truly stuck? Dunno. Maybe, but right now, my answer would still have to be no.

But what did the Yvonne do?

written August 6th, 2017

Continue reading “Behind the Wheel: Part 2”

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Behind the Wheel: Part 3

continued from Behind the Wheel: Part 2

Did we leave you with a cliffhanger? Silly, of course: Yvonne drove! I am relieved to say she got home without injuring herself or others. The car still has all its pieces…but what did she say about it and will she make a habit of it?

If this were a TV show, we would have gone to commercial break, but since we have no sponsors, there will be no words from our sponsors…just returning to what she said:

Yvonne could not see any gauges – including the speedometer. Her dark glasses caused that problem. The lighting and shadows would change along the route and it was bothersome. She planned a route that took her a bit out of her way but allowed all right turns.

Yvonne felt a bit exhilarated she had accomplished the trip. She admitted she had been scared and said she would not make a habit out of it. Many places she has to go are in congested areas and she does not want to drive there.

So successful experiment for our reader. She tried it and I will not. I see waaay too many problems with it. What is the difference? And more importantly, should you try it yourself??????

I have no idea of how much vision loss Yvonne has. I know my loss pretty much precludes driving. But if no one ever said not to drive, how do we make that decision? [Lin/Linda: Yvonne lives in Alabama where they never check a driver’s vision. Also, her doctor never tells patients NOT to drive.]

I found a resource at AAA. That is the American Automobile Association. They have a special website SeniorDriving.aaa.com.  AAA suggests we try the informal driving self-assessment tool 65 Plus to start. If the informal assessment suggests we have problems, a professional driving skills evaluation can be conducted. This can be done at a driving examination site for your state DMV or by a trained driving instructor. AAA also suggests you might want to spend some time with an occupational therapist driving rehabilitation specialist.

Some of these services can be pricey. The OT evaluation may be between $200 and $400 according to AAA. If you need lessons, it may be $100 an hour. Rather doubt any of this is reimbursable by insurance but you can try.

When I tried to find the website for 65 Plus I came upon a number of things that look kind of cool. The self assessment is 15 questions. Also offered are videos with tips for dealing with physical changes that come with age and a site that will tell you how your medications may affect your driving.

Other resources are offered through AARP, American Association of Retired People. The AARP website page Driver Safety suggested there is a driver’s program only 12 miles away from me. Amazing.

My research also suggested some states do driver’s training for ‘mature’ drivers. Check in your state for information.

So, going back to my original statement. Specifically, I am supposed to be the only bad influence on this website.

Please, please, please do not try to drive just because one reader had a successful jaunt. Think you might be able to drive? Have your hunch tested by a professional.

Been told you should not drive? For your sake, my sake and everyone else’s sake, listen, for crying out loud! You don’t want to ruin lives.

And if you are being pigheaded and driving in Pennsylvania? Tell us where you are. I want to stay far, far away.

written August 6th, 2017

Continue reading “Behind the Wheel: Part 3”

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Behind the Wheel: Part 1

TGIF! Happy Friday! In real time it is the beginning of August, 2017. As usual, Lin and I have been pleading for ‘audience participation’ in the website and we actually got some! One of our readers who is also a Facebook group member has been sharing some of her experiences with Lin. Yvonne submitted a comment on one of the recent website pages.

Now a little background on how things work with comments. As I said when we started, Lin and I retain the right to refuse anything we do not think is appropriate. Advertisements are a no no. Anything too private or salacious may have us twittering over it but it does not get to the website🙈🙉🙊. Also, I reserve the right to remain the only bad influence for the site!

That said, Lin got Yvonne’s comment & did not publish it but asked her if we could share parts of what she wrote. She gave her go-ahead.

The topic? Driving with vision loss.

Why just pieces? First reason is this: it scared the bejesus out of us. Second reason: Yvonne outlined how she was going to try driving and we do not want any of you getting any ideas! We will not be responsible.

Yvonne said she was getting behind the wheel for the first time in three years. Oy vay. I would be afraid to get behind the wheel after a year and a half. I have asked my husband to let me drive in a huge empty parking lot and he has refused. He’s afraid of me behind the wheel, too.

I know riding my bike at 7 or 8 miles an hour there are some things I don’t see until I am right on top of them. At 4 times that speed I would be running right into them. Also, coming back from kayaking the other day my friend stopped for an accident. The cop was directing traffic but I could not see his hand signals. What would I have done if I were driving? Gotten out of the car and asked him what he wanted me to do?!?! Don’t think so.

Yvonne said she is not able to see the dials and gauges. Not sure what kinds of gear display her car has but I know I used to have one with the gears on the dash. Putting a car in drive instead of park or reverse instead of drive could be the last mistake I ever make….or ever want to make.

And even if a driver believes he is happily in control at 20 miles an hour in a 35 mph zone, what about the person driving behind him? Could he guarantee he is not going to pass on a double yellow and have a head-on collision? Or how about when he starts blinking his lights, honking his horn and screaming at you? Could someone even hope to maintain composure?

Another point: Yvonne was driving in a neighborhood. While I know kids don’t play outside as much as we did, some still do. Kids are unpredictable and do not follow the rules. Kill or maim a child? Kill me now because I am not sure I could live with that.

So those are my initial thoughts on that. Why did she want to drive? What happened? Tune in next page!

written August 5th, 2017

Continue reading “Behind the Wheel: Part 1”

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Someone I Am Not

Passing. Those of you who are into sociology or history know what that is. Wikipedia defines it as the ability of a person to be considered part of an identity group other than their own. Racially mixed slaves could sometimes pass as white when they came north. Over the years many gays have passed as straights. The term used there is generally ‘in the closet’.

I can still pass as a fully sighted person quite well. Yesterday I was at the doctor for my shoulder. Dr. Sue was right, rotator cuff tendinitis.

When I told the real doctor there were some things I could not see because of my vision loss, the doctor told me she never would have known. I passed well.

Today I went to have my driver’s license photo taken. I had everything ready. I sat there and listened to every question the people before me were seeing on the screen. I had my answers down cold! Yes, I am an American citizen! Yes, that is my date of birth. I looked at the yellow blob the photographer said was a smiley face and smiled for the camera. I passed as a person with acceptable vision.

Now, don’t get me wrong, I am NOT driving. Probably could. Slowly on familiar roads I could (no matter what my husband says!) I play this game in which I watch for on-coming traffic when I am in the van. 98% of the time I am right as to how many cars are approaching. It is that 2% that keeps me from getting behind the wheel.

When I told a teacher from school (you run into people you know at the darndest places!) what I had just done, he said it made sense to him to renew my license. Better safe than sorry. He thought in an emergency I could still drive. Yep, but that was not my main reason for renewing my license.

I renewed my license so I would not feel like a second class citizen. One of the same reasons blacks tried to be accepted as white and gays have tried to pass for straight. I did not want to be relegated to the back of the bus! Metaphorically speaking, of course.

Learned and thought about a couple of things. First thing: trying to pass is stressful! I was half expecting to be ‘discovered’.

The second thing was a something I realized. Light bulb moment. There is black pride and gay pride but no low vision pride! Why did I even feel the need to pass? I obviously don’t think the visually impaired me is ‘good enough’. I need to add symbols of what I consider to be a complete adult. Hmmmm.

THAT is something for a visually impaired support group to mull over. Thought I would throw it out in a moment of stark honesty and see what you think. I would suspect other people have felt ‘less than’ as well.

The other reasons I renewed my license are me being both practical and ever hopeful. Driverless cars are coming. It would be awesome if they were available to the general public in the next four years before this license expires. What if you have to be a licensed driver to drive one? I should have a valid license! And what if a miracle happens and they find a way to either biologically or technologically restore my sight? I need to be prepared!

So, just shoot me. I spent part of my morning pretending I was someone I am not. I passed. Pretty stressful actually. Between the shoulder pain and that, I need an early nap time. Tomorrow, I am back to being visually impaired.

written July 11th, 2017

Continue reading “Someone I Am Not”

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Better Safe Than Sorry

A couple of years ago my good friend, the accountant, got run down on her bike. The person who ran her down was 90 years old. He never saw her.

Fortunately, my friend has recovered. She is still trying to get compensation for medical bills and lost wages, but it could have been much worse.

Last week there was a similar incident. Another bicycle racer and a friend of my friend was run down by an 89 year old. She was driving on the berm and never saw him. The only reason she even stopped was because her tire went flat.

So here I am at 62 not driving and hating it. It is sort of vexing these old people are still driving and I am not.  But do I truly want to be on the road? Yes and no.

I would love to have the independence of driving. However, my Macular Degeneration Partnership newsletter just came today and the article on driving hit pretty close to home. The article quotes a book titled Driving With Confidence, A Practical Guide to Driving With Low Vision. There are six questions to ask yourself and you were only ‘allowed’ one failure. I had two.   [Click here to go to that article & answer those questions].

I have to ‘decipher’ road signs. My vision is not good enough for me to catch them on the fly and be able to respond. Also, other cars just pop into my field of vision. I told my friend who brings me home from school it is like cars coming towards us in the opposing lane are emerging from a fog bank. They startle me. Sad but true, I flunked the quiz.

As much as I hate not driving, I think I would probably hate a charge of vehicular homicide a bit more. That means I stay off the roads.

Stay off the roads for now but have hope for the future that is. My vision is sitting right on the line. Technically I have not lost my license. My doctors, my husband and I all agree the prudent thing to do is not to drive. I am most definitely respecting that for now. Should the clinical trial improve my sight there is the outside chance I  may be able to do a little driving around town in the future. This would be especially true if they continue to make advances towards safer, ‘self driving’ cars.

Many people don’t like the thought of a machine being in control but if it meant I could drive and be assured I could not run into anything, I would be all for it!

Of course, I would have to take an older drivers’ course before I got back in the game. AARP and AAA both gave programs. Some private rehabilitation companies have them as well.

Maybe with these developments I can have a more independent future without screwing up the future for someone else.

Some people in the US can drive if they meet certain criteria, have specialized equipment & instruction.  Click here to read more.

Continue reading “Better Safe Than Sorry”

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News: Bicyclist’s family files wrongful death suit

March 28, 2016

Of course it is hard to stop driving when you are no longer able to do it safely.  However, this is one reason to do so.

Bicyclist’s family files wrongful death suit

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Resources

Please read the disclaimer.  I will also admit that I have not read every word of every reference.  I’m just trying to provide resources to help you do your own research in addition to what we have found. – Linda…

updated August 27th, 2017

Navigating: There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.


Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here to take several quizzes to test your knowledge of the disease
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.
  • Click here for a summary of AMD research and developments in the past 12 months (posted June 2016)

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.


Glossary

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Websites devoted to AMD

listed in no particular order

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Websites containing information about AMD

listed in no particular order

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Support

Message Boards including ones from
By postal mail
  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

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Books and reading materials

Specific Titles

Sources of Books

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Possible causes/contributing factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Genetics

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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