Rookie in Training: Part 2

My family doc referred me to an Ophthalmologist in 2008, after a Walmart Optometrist told me I had cataracts. I’ve been going to this eye doc annually and he told me to take AREDS2 and use over the counter lubricating eye drops. He started mentioning that I had drusen and this August, I asked him point blank – “Do I have AMD?” I don’t know if he would have given me an official diagnosis if I hadn’t forced the issue. He saw blood in my left eye, so did Fluorescein Angiography and referred me to a Retina Specialist. I had doubled up on my Aleve (naproxen) because of pain from a dental procedure and told him that was probably the cause. He thought I had developed high blood pressure or diabetes, or possibly Wet AMD.

Two weeks later, I had my first appointment with the Retina Specialist. By then, I had cut back on the Aleve and the blood had almost disappeared. He did an OCT of my macula for both eyes and said I had dry AMD but was fine otherwise. No wet AMD. I also went back to my family doc who agreed with me that it was probably the Aleve.

Neither of my eye docs ‘believes’ that my DNA could affect the how eye vitamins work or don’t work. The retina specialist thinks future research will debunk the research that showed zinc being harmful to some of us. If AREDS2 is the only recommended eye vitamin, they refuse to consider alternatives. And they refuse to prescribe the ArticDX genetic testing. Although I am a rookie with AMD, I feel like I am more educated on AMD than either of my specialists, thanks to Lin and Sue and all of you.

Until I can figure out my DNA, I am taking the Walmart Vision Formula 50+ which has only 9 mg of zinc. I was already taking extra zinc every time I caught a cold – or thought I might catch a cold – and I have cut back on that and take an extra 25mg with the meal when I am not taking the eye vitamins. (That magic potion to strengthen my immune system also includes 500MG of Ester C and Echinacea.)

I’ve been using an Amsler Grid for a few years now and try to eat healthy. I never smoked. So for now, I think I am doing all that I can. I feel like I am ‘in training’ for a future with AMD. I will follow the research, donate to the foundations supporting research, and let Lin and Sue be my coaches. Knowledge is power.

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Rookie in Training: Part 1

by Joann Davis

Because my mother and grandmother both had AMD and my son found out he had AMD genes when he did 23andMe DNA testing several years ago, I have been waiting for my diagnosis for years. I was involved in a Jules Stein Eye Institute GARM II study for people under the age of 65 with parents with AMD but no diagnosis yet. I was so pleased to find Sue’s blog and the Facebook Group and was an early ‘joiner’. I hated the play “Waiting for Godot” and hated “Waiting for AMD”. [Lin/Linda: just checked & Joann has been a follower of our website/blog for 1 year and 5 months…wow, she was one of the first!]

I wish I had taken a more active role in my mother’s eye health. She had cataracts removed at an early age (56) and always ate healthy because she knew that was the best way to stave off AMD. I remember the ‘Swiss Chard’ year when she was eating a lot of Swiss Chard. My dad had a big garden, so she had access to lots of fruits and vegetables. She always said “My mother got AMD when she was in her 80’s and I didn’t get it until I was in my 90’s”. (Makes me feel like a failure to be diagnosed at 70.) I bet she really had dry AMD earlier than her diagnosis. She also had Glaucoma. She had one or two shots in her ‘good’ wet eye, and thought it made it worse, so didn’t get any more shots.

Because of her age, she was having other health problems which made adaptive technology a challenge. Again, I wish I had been more proactive. She was using hearing aids and having small strokes, had serious gall bladder and colon issues, high blood pressure, and arthritis. Because she used a walker, she didn’t get the exercise she was used to. She was on a restrictive diet so she couldn’t eat the healthy fruits and vegetables anymore. She never completely lost her sight, but I know she was depressed as her world kept shrinking. She lived to 95 1/2, and passed away in 2012.

Next: Rookie in Training: Part 2

 


About Joann

Joann Davis is 70 and has recently been diagnosed with mild dry AMD in both eyes. Her mother and grandmother both had AMD and her son has the genes. Joann also has cataracts, floaters and dry eyes. With glasses, her vision is 20/40. Joann spends most of the year in northern Illinois and the winters in Ft. Myers, Florida. Joann is retired but very busy with numerous board memberships. Joann exercises every day, beginning with yoga, crunches, planks, ‘boy’s pushups’, weights, and then a long walk. Joann wants to do as much travelling as she can while she can still see and is heading to Italy soon and plans to go to South Africa next year. Joann’s career was in technology and cyber security sales, and she still belongs to cyber security organizations where she gets to hang out with the FBI and Secret Service.

 

 

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My Journey with Early AMD

by Nancy Alberts

I have early dry AMD in both eyes. I always knew I would get it because all of my mother’s brothers and sisters as well as her mother had it and all eventually had to give up reading and driving. I am 75. I regularly asked the eye doctor about it. I was always myopic and in my forties developed presbyopia. I have worn progressive lenses for many years.

About a year ago my left eye became suddenly much worse and my eye doctor didn’t know why. He sent me to a retinologist who gave me the bad but expected news. I have been seeing the retinologist every three to four months and things have remained stable. I also have floaters which are very gradually fading.

I got new glasses, but the optician could only correct my left eye to 20/40. I have been seeing double since then. I see better if I close my left eye. I’m glad I learned to wink my left eye, but I never could close my right eye. This is difficult to write because I keep seeing the line above. Everything is blurry probably because I am seeing two different images. I am going to ask the retinologist about seeing an optician more experienced in this problem to find out if there is a better solution.

I have early cataracts, but the doctor says surgery will not improve my sight at this point.

I am still driving even though street signs are a little more difficult to read. I’m thinking that I should be planning for transportation problems for the rest of my life. I can’t bear the thought of being housebound.

I am trying to do whatever I can to maintain my eyesight, but I am discouraged and confused by ‘scientific’ studies which conflict with one another. Some are obviously supported by companies that want to sell their product.

I am taking an AREDS2 supplement, eating avocados and eggs and even some fish (which I hate). I eat dark green leafy salads with olive oil which I should be eating anyway.

I have other health problems, including cancer and had a hysterectomy over two years ago. So far, I am in remission, but the cancer competes with the AMD for my worries. I check in with this group every day waiting for the magic bullet to cure AMD.


Nancy Albert is a member of the Facebook Group My Macular Degeneration Journey/al.  She is 75, a retired attorney who has 3 children and 7 grandchildren.  She rides her horse Rider regularly.   She says “I have had cancer and several other health problems which I am learning to live with.  I pray every day for a cure for AMD. ”

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My Journey with Early AMD
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Preparation: Start Now!

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

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

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

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

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

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

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

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

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

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

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

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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 member of our Facebook group 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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