Category: Self care

Put the Savor Back in Life

As my father got older I really started to worry about his nutrition. Left to his own devices Daddy would prepare a lunch of canned peaches in heavy syrup, a couple of cookies and a bowl of ice cream. It was like dealing with the tastes of a six year old! Sugar, sugar and more sugar!

I eventually learned taste loss comes with old age. Since sweet is the last flavor we can still taste, many of us go to a high sugar diet. Not all that great.

Lost of taste is just one of the sensory losses we experience. Science Digest in February of 2016 ran an article reporting 94% of older Americans have at least one sensory loss. 38% have losses in two senses and 28% have three, four or five sensory losses. Some of these deficits were mild but many of them were serious. The study found 64% of their sample ages 57 to 85 suffered with a significant deficit in at least one sense. 22% had major deficits in two or more senses.

Yikes! This is scary stuff!

Sensory loss takes the savor out of life – literally. It is one of the main reasons people may report a reduction in the quality of life.

Alright, now that we have had the stuffing scared out of us, what can be done about this? Most sources suggest getting any potential sensory loss evaluated medically. Some sensory problems cannot be treated but there are some that can.

Just because some of us have a vision loss that is currently not treatable does not mean the same holds true for other sensory loss. Don’t be fatalistic! Go for help.

Then, of course, there are rehabilitation services. I would like to say rehabilitation services and assistive technology is universally available, but I know better. If you cannot get services funded, use resources such as this website. We regularly try to find things that are free or relatively inexpensive that can help you cope with your vision loss. I expect there are websites for hearing impaired although I am less optimistic about sites on taste, smell and touch loss.

And speaking of smell and taste loss…

In Betrayed by our Bodies – Sensory Loss and Aging Dan Orzech suggests the use of odor detecting technology so we can avoid burning up in a fire (smoke detectors) or being asphyxiated by leaking gas.

Orzech suggested using a little butter or gravy to make the odor and flavor of food more chemically available. (A man after my own heart!). He also reported dehydration can make it harder to taste so make sure you drink your fluids.

Although not being able to see colors well is a hallmark of AMD, do what you can to make foods bright, colorful and visually appealing. Intensely colored foods are rated as more flavorful that dull colored foods.

Given the number of readers and FaceBook members we have, I would suspect more than one or two of you are experiencing multiple sensory losses. Don’t ignore them. There really are ways to put some of the savor back into life!

Written August 4th, 2016

Continue reading “Put the Savor Back in Life”

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”

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”

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”

Too Much of a Good Thing

by Cora Lyn Sears (see her biography at the end of this page)

2016 was a bad year. In the Spring I lost my hair, in the Fall I was diagnosed with wet AMD. How much worse could it get?

About 11 years ago I was diagnosed with mild AMD in both eyes, and took the Vitalux brand AREDS2 eye vitamins faithfully twice a day. (my mother lost her vision to AMD).

At my regular optometrist appointment last Fall it was determined one eye had advanced to wet. I was devastated! I hadn’t noticed much change in my vision, except I needed slightly more light to read and the reading portion of my progressive lenses seemed to have gotten smaller. The Amsler Grid still showed the same few wavy lines and few very light ‘puffs of smoke’ but nothing terrible. The speed of what followed was a bit scary – an almost immediate appointment with a retinal specialist followed by my first injection the next day.

Before this I had known of the injections for wet AMD but hadn’t thought much about them, thinking incorrectly a few injections would stop it almost permanently.

To date I’ve had the first three injections followed by the OCT testing which showed bleeding still happening. Then two more and another test. Still bleeding. Now on my next group of three.

I had begun researching and discovered your Facebook page and website, spending more time online than I thought possible. The more I read, the more I needed to read. The links to articles about the amount of zinc in my eye vitamins being a possible problem led me to search for the ones with less zinc, which were actually not that easy to find. Someone on your Facebook page suggested Walmart, which is where I finally bought them and switched in the late fall. [Lin/Linda: there are several options from Walmart, only PreserVision have the exact ingredients from the AREDS2 research study.  Click here to see what’s available.]

Now the other part:

Last spring I started losing my hair and within three weeks I was completely hairless. Alopecia universalis!  I tried everything my doctor or I could find with no success. An appointment with a dermatologist confirmed my worst suspicions that this was permanent. Apparently an autoimmune problem. Zinc enhances immunity, right? And I had been overdosing on it for over 10 years. So less zinc should help the autoimmune caused hair loss, shouldn’t it?

But then why is so much zinc in the AREDS2 formula when AMD is connected to the immune system as well?

In January I grew a few eyelashes, then came a few baby fine eyebrow hairs. Now, 14 months after losing my hair and seven or so months after cutting down the amount of zinc, I am starting to see a tiny bit of new growth on my head – only perhaps a few dozen or so, but it’s a start.

It’s amazing how everything in our body is connected and works in harmony, until it doesn’t.

An afterthought… Use the Amsler Grid by a window, not in the bathroom. I saw more wavy lines and puffs of smoke there than I had seen in the bathroom.

written July 23rd, 2017

I’m a healthy 70 year old woman. That’s hard to write as I really still feel 40. I live in Victoria, a beautiful city on the west coast of Canada. I’m divorced with two children and one older teenage grandson. I hike about 5 miles three or four times a week with a wonderful group of like-minded women. I’m a retired journeyman painter with varied creative interests such as sewing and photography. I love to travel, whether a road trip or something farther afield. I’ve followed a low-carb diet for years. I’ve had both hips replaced due to arthritis and sometimes I think if this was 50 years ago, I’d be sitting in a corner in a wheelchair going blind.

 Back to Our Guest Authors: Their Stories

Moderation in All Things

Moderation in all things is an old idea. There are 2,000 year old references to it and it has been recycled and reused and rephrased millions and millions of time since then. Just about everyone knows what the saying means but sometimes we don’t practice the meaning.

Right now we don’t have much ‘to hang our hats on’ in the way of treatments for AMD. The one thing that seemed solid – but in actuality may not be all THAT solid – is antioxidants can help to control the development and progression of AMD. And if a little is good, a lot should be GREAT; right? Wrong.

To dredge up another old saying, there really is such a thing as too much of a good thing. It is possible to overdo the antioxidants.

Wikipedia explains having too many bioavailable antioxidant compounds can interfere with the immune system. It’s an underlying cause of allergies, asthma and skin alterations. A reduction of free oxygen species can lead to allergic, hypersensitivity disorders. A common example of this type of disorder is eczema.

Many antioxidants are antinutrients. Antinutrients are compounds that interfere with the absorption of other nutrients needed for health.

There is also a question of how effective our bodies will ‘allow’ antioxidants to be. Poljasak and Milisav in 2012 noted there appear to be homeostatic mechanisms in cells that govern the amount of allowable antioxidant activity. Most people are able to maintain their setpoint of oxidative stress so no matter how much additional antioxidant they consume further decreases in oxidative stress do not occur.

And this is probably a very good thing. Reactive oxygen species are involved in chemicals signaling to regulate a large number of cell functions. The elimination of free radicals would only serve to severely disrupt the functioning of the cell.

Although the biochemistry is beyond my ken right now (and perhaps also beyond my Barbie – ouch! Don’t hit me! It wasn’t that bad!), it appears that in some cases antioxidants are helpful rather than harmful to cancer. Vitamin E and beta carotene supplements increased the rates of lung cancer in smokers.

And while we are talking about things I don’t understand, Poljasak and Milisav shared iron and antioxidants react to one another in weird ways. They also noted the levels of cellular iron increase as we age. Something else too much antioxidants could mess with.

Erica Wickham writing for Livestrong.com shared it is best to get antioxidants from food and not from supplements. Recommendations from the U.S. government are to consume a varied diet with at least five servings of fruits and vegetables and six to 12 portions of grain. In a day an adult should eat about 2.5 cups of vegetables. A half a cup of cooked grain or a slice of whole grain bread is considered a serving.

Once again we are back to my ‘grandma-isms’: moderation in all things and there really is such a thing as too much of a good thing. We have enough going wrong with our eyes. Upsets in cellular chemistry not required. Be smart with antioxidants.

written July 23rd, 2017

Continue reading “Moderation in All Things”

That Preachy Zealot

Here she is again, that preachy zealot for clean living! How are you all doing?

I was looking for new info on AMD and I found this article.

I know I harp on this topic ad nauseam but seeing this in the new releases I could not help myself. I am basically weak (and can be profoundly irritating?).

Anyway, a recent article on nature.com presented research suggesting AMD does not like clean-living folks. People working on the Blue Mountain Eye Study evaluated a group in the late 1990s and then again 15 years later. They looked at physical activity, diet, smoking and alcohol consumption as it relates to AMD. After all was said and done, the researchers decided it would be helpful if people could be encouraged to engage in good health habits.

They quoted data that women who eat well, are physically active and don’t smoke are three times less likely to develop AMD than women who do not have a healthy lifestyle. If you add the complement factor H at risk allele into the mix, the poor souls who eat crap, don’t exercise and smoke really don’t have much of a chance of dodging the disease at all.

What I just quoted was an older study, CAREDS. It used only women. The Blue Mountain people decided to replicate it but to include both genders. They also added alcohol consumption as a variable.

Blue Mountain concluded the combined effects of the four, healthy living variables were better than only one of the habits alone. They hypothesized each of the healthy habits helps to reduce oxidative stress and therefore reduce inflammation, generally thought to be a huge factor in the development of AMD.  [Lin/Linda: Sue talks explains what oxidative stress in her page Electron Rustlers.]

In addition, good health habits can affect the density of macular pigment. Thicker macular pigment can be protective. And BTW, levels of macular pigment can be negatively affected by obesity.

Since I always like to support our friends Down Under, I am making a pitch for healthy living just like the Blue Mountain people. Avoiding bad habits and developing good ones can decrease your chances of developing AMD. It can also reduce the rate of progression of the disease.

Hard to change habits? Absolutely. I am a carbs and salt girl. Horrible for me, but that is what I crave. I have never been a fruit eater.

However, since getting my diagnosis I am drinking a cup of fruit juice every morning. Enough of a change? I doubt it but at least I feel as if I am making the effort.

How long does it take to establish a habit? Google says 66 days. If you can change one thing in your lifestyle and stick with it for 66 days, you have dealt a blow against AMD. Lifestyle changes are one way we can take some of our power back from this disease. Worth a try. Continue reading “That Preachy Zealot”

Rock On!

Over the past year I have developed a certain affection for Cheeseheads. Wisconsin seems to do a lot for people with visual impairment. However, I am starting to think the Beaver Dam researchers may be a bunch of killjoys!

Wisconsin? Beaver Dam? Yep. Beaver Dam is a town with between 16,000 and 17,000 people located along the Beaver Dam River and, yep, Beaver Dam Lake. I guess they ran out of catchy names. (Actually, that really DID happen in upstate New York. I got a giggle out of the fact they gave up and just started numbering lakes!)

But back to Wisconsin. The Beaver Dam study started in 1987. Since then they have regularly polled and tested the folks about all things vision. A big area of interest for them has been macular degeneration.

Lin sent me a 2004 article on how the Beaver Dam people found a correlation between sunburns in youth and macular degeneration. Problem was she sent it Friday evening. The evening before I was going to “Brigg’s”, an outdoor blues/music festival. Really???? Why now? [Lin/Linda: in all fairness, I did not know about Brigg’s until AFTER I sent Sue the article!]

To make a long story sort of short, I put on my ‘dancing shoes’, slathered on the sunscreen and went. The article said sunburn in your youth. Sixties are not youth; right? Had a great time.

I decided old rockers never die; they just go to music fests. I saw more gray ponytails – male and female – than I had ever seen in one place before in my life. Rock on!

Came home and I am looking into this sunburn and AMD stuff. After all, outside is one of my favorite places!

The article Lin sent me says people with 5 or more hours of sun exposure are more likely to have increased retinal pigment. Hats and sunglasses are associated with fewer soft drusen and RPE degeneration. 10 or more ‘severe’ sunburns in youth is more than twice as likely to be correlated with AMD later in life than two or fewer sunburns.

Something that was a relief to me was there was no correlation between time spent outdoors in winter sports and AMD. Apparently my day skiing right before I ‘lost’ my second eye had nothing to do with things. (Phew!)

The report kicks around several reasons for the sunburn/AMD correlation and finally decides more study is needed. Me, too. Khan, Shahid and Yates found a ‘suggestion’ of an association between sunburn prone skin and geographic atrophy. In 1998 the Blue Mountain Eye Study (hi, there, New South Wales!) found blue eyes can lead to AMD trouble. Sounds like the jury may still be out on sunburnt SKIN and AMD.

However, the jury has come in on sunburned eyes. The Southwest Eye Center reports photokeratitis, sunburn of the eye, can result in pterygium (a condition of the conjunctiva/cornea), cataracts and possibly cancer. AMD is listed on the page as a ‘maybe’.

Bottom line is this: wear sunglasses. Wear sunscreen. And, rock on! ?

written July 9th, 2017

Continue reading “Rock On!”

Eyes Open, Mouth Closed

TGIF! In real time, welcome to the weekend!

In the interest of fair and unbiased reporting, I am once again writing about wet AMD…..well, actually I am writing about intravitreal injections, a topic many more of us are going to be interested in very soon. Although there seem to be PLENTY of you wet folks getting the shots already. Did you know intravitreal injections are the most commonly performed medical procedure in the US? According to a 2015 Review of Ophthalmology article, Updated Guidelines for Intravitreal Injections, the numbers are twice what they are for cataract surgery. That makes sense considering people only ever have two cataract operations as opposed to perhaps 24 or more injections in a year alone. No matter the logic behind the numbers, though, that is still a lot of trips to the doctor.

Anyway, when shots first started in 2004, there was a ‘best practices’ paper written. That paper was revisited in 2014.

One thing I noticed? You chatty people should stop trying to engage the doctors and nurses in conversation! That was suggested back in 2004 and has been supported in more recent literature.

Why, you may ask. Do you remember when your parents told you not to bite (or get bit!) because the human mouth is filthy? They were right. Mouths are ridiculously germy.

Healio reported a strict ‘no talk’ policy during injections causes substantial difference. Chatty doctors had seven cases of infection due to oral pathogens. Doctors who did not talk had two. Granted, these numbers were over a total of over 47,000 injections, but do you want to be the one with a raging eye infection? (That answer should be ‘no’.)

And if you asked to have a companion for ‘moral support’ and got told no? Infection was probably the reason. Doctors can control whether they speak or not, but they have no control over people you bring with you. They are not being cruel. Leave the motor mouth in the car.

Other things in the best practices paper were equally common sense. Use adequate antibiotics and anesthesia. Monitor intraocular pressure. Wash your hands! The whole idea is to reduce discomfort and reduce infection, not necessarily in that order.

Pretty much, the lesson is: avoid infection. Make sure you have a nice, clean face and hands when you get there. Understand why you cannot have people with you. Be quiet and allow the medical staff to be silent as well. Although the paper said masks and sterile drapes are optional, if you want them, you have the right to request them.

Once again, the goal is to keep you comfortable and – more importantly! – keep you from having eye infections. Stay healthy! In the end, the responsibility is on you. Speak up about concerns. If they won’t cooperate, look for other resources. Continue reading “Eyes Open, Mouth Closed”

Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration

It’s Lin/Linda.  I created this page to go with Sue’s page Not Your Parents’ AMD.  Like some of you, I had a loved one with AMD.  It was my father who was diagnosed with AMD in 2005 at the age of 82.  At the time, I was living 700 miles away and I did not know much about the disease or at what stage he was diagnosed.  He progressed to geographic atrophy (GA), that much I knew.  He was the sole caregiver for my mother who had Alzheimer’s Disease.  He continued to drive (not safely), take care of her and the house.  He was never referred to vision rehabilitation or offered any help other than being told to use handheld magnifiers.

I wondered how things have changed since then which led me to do this timeline review.  Not only have there been advances in the medical end of the field but also in the technology that is allowing people to remain independent for as long as possible.  That is if a person learns how to use the various devices and apps available.

I’ve based the categories of time on an article Age-Related Macular Degeneration
1969 –2004: A 35-Year Personal Perspective by Stuart L. Fine, MD published in 2005.  He says “In 1969, patients with AMD constituted a small part of a typical ophthalmic practice. From 1969 to 2004, the prevalence of AMD has increased, and the methods of evaluation and treatment have changed dramatically.”

I know I have missed many events that have been critical to the history of the treatment & care of AMD.  There is SO much information out there and I’ve tried to use the most significant dates I could find.  Have a suggestion of what to include? Did I get a date wrong? Let me know in a comment or send me an email at light2sight5153@gmail.com.

1st Era: 1969–1979
  • Emergence of fluorescein fundus photography: test used in diagnosis of retinal diseases
  • Development of ‘hot’ (high power) laser photocoagulation, first treatment for wet AMD
  • Relationship of drusen to age-related macular degeneration
  • Other developments:
    • 1976-1977 first personal computers affordable for home use
    • more low vision aids:
      • 1960s large print books became available
      • 1976 large print calculators became available
      • 1969-1970 CCTV (closed caption TV) for reading aid
2nd Era: 1980–1994
  • Clinical trials to evaluate new treatments, especially laser photocoagulation (1979-1994)
  • Development of risk factor data from large and small epidemiologic studies (epidemology is looking for patterns & causes)
  • mid-1980s term ‘senile macular degeneration’ becomes ‘age-related macular degeneration’
  • Other developments:
    • 1982 Vitreous Society was founded; 1983 first meeting attended by 44 retinal specialists
    • 1991 OCT (Optical Coherence Tomography) test used in diagnosis of retinal diseases
    • mid 1980s name changed from ‘senile macular degeneration’ to ‘age-related macular degeneration’
    • 1992 Americans with Disabilities Act (ADA)
    • 1983 first cell phones
    • 1991 World Wide Web for ‘surfing’ the Internet with easy-to-use browsers
    • low vision aids:
      • MaxiAids catalog of aids for orders from people with low vision & other impairments
    • technology/low vision aids:
      • 1982 DragonSystems founded Dragon NaturallySpeaking, speech to text
      • 1988 ZoomText was released which is software to magnify text on a computer screen
3rd Era: 1995–2003
  • Evaluation of radiation therapy for neovascular AMD, not proven to be effective
  • Assessment of pharmacologic interventions for neovascular AMD; Photodynamic Therapy (PDT) “cold” (low power laser) with Visudyne (first drug treatment;  2001)
  • Prevention trials: results AREDS released 2001
  • Other developments:
    • 1995 Amazon sells books online (1998 expands beyond just books; e-books 2000)
    • 1996 Google released
    • 1998 first e-book reader The Rocket
    • 2000 GPS available for civilians; 2001 personal navigation systems available like Garmin and TomTom
    • 2000 Microsoft & Amazon sell e-books
4th Era: 2004 – 2017
  • Completion of ongoing trials for neovascular AMD: FDA approval: Macugen 2004; Avastin 2004; Lucentis 2006; Eylea 2011
  • Earlier identification of eyes at risk: regular use of OCT (Optical Coherence Tomography) and other diagnostic tests
  • Prevention trials: results AREDS2 released 2013
  • Increased number of retinal specialists: eg, American Association of Retinal Specialists (ASRS), formerly Vitreous Society (see 1982 above), has 2700 members representing 60 countries.
  • Other developments:
    • 2011 First baby boomers turn 65
    • 2004 Facebook
    • 2013 first ‘bionic eye’ retinal implant, Argus II approved by FDA
    • technology:
      • 2007 Amazon Kindle e-reader; iPhone & Apple IOS
      • 2008 Android 1.0 & Android phone
      • 2010 Apple iPad
    • technology/low vision aids:
      • 2005 Apple VoiceOver for Mac users
      • 2009 VoiceOver added to iPhone IOS
      • 2010 FDA approved implantable telescope
      • smart glasses/wearable technology
      • 2014 KNFB Reader app for Apple & Android; 2017 for Windows 10
    • ongoing research areas:

Keep Your Heads

Let’s face it folks. They see us coming a mile away! Here we are: older, maybe a little too trusting and slightly desperate. We are very often good pickins for the quacks and scam artists of the world.

Last month, May 2017 in real time, Modern Retina ran a piece on Medicare fraud as it relates to eye care. Unscrupulous doctors are fleecing Medicare literally out of billions of dollars.

These doctors are diagnosing every patient with wet AMD or some other condition without proper assessment. They are using treatments that have never been described or studied in the literature and sometimes don’t even offer that treatment but still bill.

One of the treatments was called ‘subthreshold laser’ treatment. The doctor writing the article indicated he had never seen any evidence suggesting subthreshold laser treatments helped wet AMD. He HAD however seen research suggesting these treatments were detrimental to those of us who have dry AMD.

In addition the doctor being prosecuted had billed for a totally different procedure than he had actually done. Not sure what he told his observant patients.

I have said it before (repeating myself a lot lately!) but if it looks too good to be true, it probably is. If no one has ever heard of the treatment, find out why. If your doctor asks you to go along with fraudulent billing because “no one understands” his great, new process, decline.

It is a federal offense and you do not want to be part of it. And perhaps most importantly, if he asks you to pay thousands for an ‘experimental’ procedure, run the other way.

Patients do not pay for experimental treatments. They pay us.

People get desperate and grasp at straws, but remember: the time and money and heartache you are spending on these so called treatments may leave you ineligible for later, proven treatments. They may injure you more. They may scam you out of big bucks and leave you with nothing to show for it.

Unfortunately as it stands now, there are no proven treatments for dry AMD. Anti-VEGF treatments stop the growth of new vessels but leave the underlying disease. I understand your frustrations. I share your frustration. That does not mean we have to be stupid about it.

Making decisions based solely on emotion is bad business. Keep your heads. There is progress being made. Wait for it.

written June 12th, 2017

Continue reading “Keep Your Heads”

Not Your Parents’ AMD

3 pm Monday and so far it is a good day. The pool guy is working on my new liner. The funny thingee on my tummy is a normal, benign growth and the transportation company got new vans with fancy logos painted on them. No more confusion with two dozen, white vans. Life is looking up!

Lin told me there was a conversation thread in the Facebook group about parents who struggled with AMD. People remember what their mothers and fathers went through and they are determined not to become like them.

I am reasonably sure my father’s vision problems were AMD. The more I think about it his father’s vision problems may have been AMD. I remember both of them using a handheld lens to read the newspaper as well as the really strange interpretations Daddy would have when it came to TV shows. I have no idea what HE was watching but it was not the same thing I was watching!

I have said it a couple of dozen times and I will say it again: this is the best time in the history of the human race to be losing our sight. Absolutely the best. You may not realize it. You may remember what you saw and think we are doomed to go there too but we are not. We really are not.

I tried a handheld magnifier for a couple of weeks. Not doing that again. They are very inefficient. I have my CCTV, my handheld reader and my iPad which can go in the Justand.

[Lin:Linda: To see what Sue uses on a daily basis, check out these pages: A Day in the Life and A Day in the Life:Work Day.]

I can get newspapers on my phone and books from BARD (there are other sources, too, as well as magazines which are available).  I’m able to take a picture of pretty much any text I want and my KNFB Reader will read it to me. The zoom feature on my iPad will allow me to read email and research pretty efficiently. ZoomText allows me to work. (refer to the “Day in the Life” pages above)

If I want to look at something a little distance away I can use my max TV glasses or my monocular. Not too bad.

Depending upon when Lin publishes this page, you either have or will be hearing about audio description services (coming soon!). If my father had had those for the TV we would have been “on the same page” a lot more than we were when we watched programs together. Audio description can also allow you to go to the movies and live theater and actually know what is going on.

Do I want to be losing my sight? Hell, no! This is not a walk in the park but it is not what Daddy endured either. Just the same he made it into his mid 80s and managed to take care of himself until other issues brought him down. If he could do it without all of the toys, I can do it.  [Lin/Linda: My dad had geographic atrophy & took care of my mother who had Alzheimer’s using several different handheld magnifiers & a few other low vision aids.]

Yet another reason to be optimistic is all of the exciting research happening. We are poised for a veritable explosion of treatments. Not cures, mind you, but treatments. Thirty years ago there was nothing.

[Lin/Linda: To see what’s in the research pipeline, click here.]

What can you do? Be willing. Use what has been provided. If you put that iPad your son gave you in the drawer you have absolutely no grounds for complains. Bluntly put? Your extra suffering will be your own damn fault.

What else? Volunteer. Sign up for clinical trials. Join support groups. Share your knowledge and skills.

Life – and this vision loss bit included – is the craziest thing you will ever experience and none of us get out alive. Make the most of it while you can.

Continue reading “Not Your Parents’ AMD”

Get Out of That Chair

OK. So I am a noodge. I harp. But you know it is for your own good!

And you also know there is no bigger zealot than a convert. I have sort of lived my life ‘in reverse’. Bookish intellectual before 25, fitness fanatic after. I preach (and preach and preach) exercise because it works.

Right now I am having no problems getting enough exercise in. That was ‘enough’. Not too little like many people I know and not too much like a few others. However, what happens when my vision gets worse?

People NEED activity! AARP did an article on how deadly sitting too much can be. That was the word I used: deadly. We already knew sitting too much can lead to cancer, diabetes, heart problems, yada, yada, yada. Now we know it can hurt your chromosomes, for crying out loud!
Telomeres are the ‘caps’ or aglets at the ends of your chromosomes. Nice, ‘big’ telomeres are sort of protective and are found in younger people. As we age we wear them down. Smaller telomeres mean we are closer to death. Think of what your shoestrings start to look like when you lose the aglets. Those laces are not long for this world.

AARP reported people who sit more than ten hours daily and get little exercise have cells that look to be 8 biological years older than those of their active contemporaries.

I don’t know about you, but I would like to have those 8 years!

And to add insult to injury, a sedentary lifestyle style makes you dumb. OK. They did not say ‘dumb’. They are what I am not: politically correct. That is what they meant though when they said you lose brain agility.

What are the alternatives? You have lost a lot of your sight and you are scared to death to move from your chair. People put everything within reach and leave you there. Fantastic, NOT!

Orientation and mobility (O&M) services are a great thing. Problem is they appear to be as scarce as hen’s teeth. If you cannot get O&M services request a free, white cane and start to practice. Back and forth to the bathroom a dozen times. Rest. Repeat. Have them set your lunch up on the kitchen table and walk there to eat. [Lin/Linda: In the US, you can get a free white cane from the National Federation of the Blind: click here.  In the UK, I’m told you can get a free white stick/cane from the NHS but I can’t find anything about it online.]

Even if you are afraid to leave your chair you can still do all sorts of things to exercise. Side bends, seated jumping jacks, leg raises, etc. Get a doctor’s clearance and go to it. Remember this is both quality and quantity of life we are talking about.

That is pretty much it for his post. Staying mobile and agile (not to mention strong and flexible as well having good endurance AND good balance) is the key to health and contentment, good vision or not. Continue reading “Get Out of That Chair”

Everyone Into the Pool

Once more a misadventure got me to thinking about ‘things’. I got out kayaking a little bit today. Coming in, a gentleman was trying to help me and I hurried a little too much. I hurried myself right into the drink!

Not a serious problem. I was only a few feet off shore and there were people there. I am still a decent swimmer. Made me wonder, though. Do blind people swim in open water?

VisionAware, a part of the American Foundation for the Blind, strongly recommends the buddy system. In fact their article calls swimming with a partner a ‘must’. If you get separated in the surf, swim in the direction of the waves. Listening for sounds can help a visually impaired swimmer get to shore. If there is any vision left, buildings, flapping flags, and lights can help with orientation.

The people at AFB much prefer we swim in a pool or body of water that is confined and not awfully large. In the end that, again, generally means a swimming pool.

If my pool ever gets its new liner (tomorrow? It was 92 degrees Fahrenheit without a cloud in the sky today!) I could string a lane divider to keep me from going all caddywhompus. I could also put a bright-colored beach towel or other marker at the end so I don’t swim right into the wall.

If you are a competitive swimmer as I am not, you can use a person called a ‘tapper’ to touch you right before you hit and to signal the flip turn. Counting the average number of strokes you make in a lap is good for non-competitive swimmers but will slow down those who are competing.

If you haven’t considered water exercise as a visually impaired person, maybe you should. Swimming is great, aerobic exercise for young and old. Classes in water aerobics and even just swimming can provide great opportunities for socialization. Also, remember mastery as a wonderful emotional regulation skill a la DBT?

Learning to swim or even just getting up the guts to get into the water after a vision loss, is a serious accomplishment.

Once again our friends across the pond are putting some cool stuff out there. Britain has an organization called British Blind Sports, at britishblindsports.org.uk, of course. Their visually impaired friendly swim program sounds exciting. They offer a whole training program for coaches. This program also includes information for qualifying for the Paralympics.

Once more I looked for program serving us ‘mature’ folks and found mostly stuff for kids. If you are near a YMCA or a JCC (Jewish Community Center) with a pool, call and ask. That brochure with training ideas from British Blind Sport could be a resource for a swimming instructor with no experience with the visually impaired.

Remember the more fit you are, the healthier you will be. The healthier you are, the longer you keep your independence. Water exercise can help you to achieve these goals.

Now, everyone into the pool! Continue reading “Everyone Into the Pool”

Improving Communication: Part 3

Hello! Rode my bike to the Y. Took a couple of classes and rode home. Then it was dog walk time. Right now I could stand a nap! Hopefully I can stay awake enough to write a sensible page. A little wonky? You know why!

I have continued to look for more information on loneliness and poor, social relationships for the visually impaired. You remember, miscommunication because of lack of nonverbal cues.

[If you have not read Sue’s previous 2 pages, I suggest you do that before continuing.  First, there’s Improving Communication: Part 1, then Improving Communication: Part 2]

The Pocklington review ended up saying there are no current answers. They called for more research. Hopefully the increasing numbers of us visually impaired will encourage someone to get on the proverbial stick.

Once again, there should be some sort of manual for this but I cannot find one. (Back to if you want something done right, do it yourself! Anyone want to make topic suggestions?)

An abstract from work done by Wang and Boerner indicated responses in their study fell into two categories. Sometimes the visually impaired adjusted their behavior while other times they just let the relationship go bad.

The group who tried to maintain relationships depended upon a few different strategies. These strategies included explaining themselves more and being more assertive. They also included relying on other senses for information, faking it and being more selective about whom they interacted with.

Remember several articles I read for both vision and hearing impairment stressed the need to share you have a disability. That can be hard for some people although not admitting to a disability can end up being harder in the long run. Sometimes we just gotta accept.

The people who let relationships go of course did things differently. They would withdraw and make fewer efforts to socialize. They would also become angry and tell people off.

As I research this, I keep coming back to the need for work with a good speech and language therapist to improve communication skills. Or at least that is my conclusion. Once again I could be dead wrong.

Quite a while back an Italian study, Extracting Emotions and Communication Styles from Prosody, included some neat charts that are basically a guide to identifying speaker emotion from prosody. Prosody is the pattern of stresses and intonations in speech. For example, joy is characterized by factors like quick meter, quick attacks and slight or missing vibrato.

If these characteristics have been identified and listed, it means people can be taught to recognize them. And if we can be taught to recognize them, we can harness them in efforts to improve communication which just might lead to fewer feelings of isolation and loneliness. Maybe?

….for what it is worth. That’s what I got. If there is a definitive answer out there, I don’t got it. I can’t find it. Anyone have any other ideas, let us know and we will pass them on.

These three pages were in response to an inquiry from a reader. If she knows one person with these concerns, we suspect there are dozens more lurking in the shadows. By addressing her concerns – or yours- we may help others.

Keep those cards and letters coming!? Continue reading “Improving Communication: Part 3”

Improving Communication: Part 1

TGIF! Greetings from the land of organized chaos, aka my life!

I have not been writing as regularly as I would like. For one thing, as I keep pointing out, there are lulls in the action with AMD. You adapt to a certain level of loss and things are calm until the next loss of vision occurs.

Crank up the magnification and soldier on until the yet next disaster. Lulls are not all that page worthy…and I don’t need a disaster right now.

The other reason is my days have been flying! I am taking more counseling clients and my days are jam packed. Nothing like being busy to make the time fly!

All of this by way of saying, I am sliding into a holiday weekend (Happy Memorial Day!) and I am going to try to pound out a few pages over the next few days.

We stopped for deep dish pizza on the way home. (The new comfort food!) I walked the Beastie Baby in the neighborhood and the field. She drank from every rain puddle (mud flavor! Yum!) and we investigated what looked to me like bear scat (poop, no bear. Life is good). Well fortified and with the ‘adventure’ out of the way, I guess I am ready to go.

The topic was suggested by one of our readers. She is located in Massachusetts and has just helped to launch a new, vision loss support group. (Kudos!) The topic had come up in her support group: vision loss and social isolation.

The short answer is “yep”. Problem is, I rather doubt I can make a page out of that. In trying to flesh things out a bit, I came upon a publication by the Thomas Pocklington Trust. Published in 2013, this literature review contained 44 pages on the topic. Good resource. [Lin/Linda: it’s 44 pages if you download the Word version; 8 pages for the PDF version which is what I’ve linked to.]

The review starts by pointing out loneliness is not part of natural aging. Loneliness and social isolation are also not inevitable for the elderly, visually impaired population. (So maybe “yep” is not the short answer?)

That said, however, it is easy to see how vision loss, loss of function and depression can lead to social isolation and how social isolation can loop back around and cause more depression, etc. People with vision loss can really end up in a nasty downward spiral.

The review acknowledges the problems that can come from not recognizing faces and facial expressions. Without nonverbal cues to go by, communications can easily breakdown.

Lack of good social communication can break down social relations and lead to a drop in feelings of self-efficacy. Feeling you are not able to adapt and cope with your loss once again leads to all sorts of issues and perpetuates the downhill slide.

I think I mentioned before that feelings of self-efficacy are exceptionally important to mental health. The “I can do it myself” attitude can be reinforced by success in using assistive devices. In another page I believe I quoted something that said one of the best predictors of life satisfaction is access and use of assistive technology, both high and low tech.

OK. To be continued. Since some of us have trouble reading long text, I will stop here for now.

Continue reading “Improving Communication: Part 1”

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”

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”

Quack, Quack

Caveat emptor! That is Latin for “hold on to your wallet!” (Actually it means “let the buyer beware!” but close enough.)

As of late we have been hearing about ‘medical professionals’ offering services that sound pretty much like quackery.

You know the old saying: if it walks like a duck and quacks like a duck, and looks like a duck, it is probably a duck. The problem is some of us don’t know what one of those old ‘quackers’ looks like.

Ergo, I am offering a short tutorial on identifying the ‘ducks’ among us (Great. Another ‘ornithology’ lesson ?).

You can find dozens – literally dozens; makes me kind of sad about the ethics level in America – of posts talking about how to spot a quack. Skeptical OB gives a shortlist of six red flags that can be applied across the disciplines. They report quacks make claims of secret knowledge and giant conspiracies. They baffle with bullshit and claim they are so revolutionary they threaten the medical establishment. Claiming toxins in everything is a biggie. Also flattery. You have heard it. How you are doing such a great thing and blazing the path for others? Yeah, that one.

There are also posts talking about how to spot quacks in more specific areas. Quackwatch.com has a list of 26 ways to spot vitamin pushers.

Some financial ways of identifying quacks are listed by USA Today. Reputable doctors do not ask for deposits or cash up front. Potential quacks offer the most amazing – and expensive! – treatment first and don’t even bother attempting other treatments. Not covered by insurance? Be suspicious and ask lots of questions.

To support some of the points in the Skeptical OB post, USA Today points out science is pretty much a team sport and very few people make discoveries all by themselves in their garages anymore. Things are just too complicated and too expensive these days.

The idea of the dashing, undaunted, brilliant rogue doing his research alone at night (I just flashed on Dr. Frankenstein here; sorry.) is romantic but obsolete.

Testimonials are great at funerals and ‘roasts’ but anyone who has had to write a recommendation knows such things are easily slanted and misinterpreted. I am stopping short of accusing anyone of outright lies or psychotic delusions, but if all the treatment has to back it is testimonials? Put away the credit card and leave.

The problem – or one of the problems, I should say – with quacks is they go after the vulnerable. Sleazy sons of sea crooks. Are some of us desperate? Absolutely. We don’t want to believe medicine is not yet in a position to help us.

USA Today suggested one of the things I have been harping about now for months: sign up for a clinical trial. Even though ‘mine’ have been stalled for months and driving me insane, mainstream research is where the action – and the hope – is.

Minimally go for a second opinion before you commit to any treatment, but especially if it looks a little murky based on some of the red flags we have talked about. If your treatment provider tries to discourage you, he might be hiding something (like he’s a quack, for example!)

Thus endeth the lesson on ‘foul’ identification?

Be safe out there.

written April 14th, 2017

Continue reading “Quack, Quack”

Preventative Maintenance

Last night I got up to go to the bathroom and I was dizzy, really dizzy. My husband suggested it was my blood pressure so when I got to school I had the nurse check it.

I may not be the gold standard of 120/80 but I was not bad. I hate taking medication but I take it for my blood pressure. As I get older there is not only the possibility of blowing a gasket but there is some (inconclusive) evidence of an association between hypertension and AMD. In any case, I don’t want to make things worse in the eye department.

After being harangued and harassed for years about my blood pressure (part of the reason I have white coat syndrome!) and now taking medication, I was a little dismayed by a medicalxpress.com article reporting there are preliminary findings suggesting some blood pressure meds are associated with much greater risk of developing AMD! What is up with that?

As part of the Beaver Dam studies, they have been collecting data on eyes since 1987. Their data indicated there is a correlation between the use of vasodilators such as some people take for blood pressure and the development of AMD.

Please remember correlation does not mean causality. In other words they could be running together but one is not causing the other. For example, Florida has the largest number of elderly of any state but living in Florida does not make you old.

There are other factors at work. Just the same, something is related between them and we should figure out what it is.

The researchers also found that beta blocker use was associated with increased risk of developing AMD. In particular it was associated with the development of wet AMD. Beta blockers are used for treating heart disease.

Now the article did not say whether the control group also had some form of circulatory system disorder for which they were receiving different treatments. Therefore it is hard to say if it is the medication doing the damage, the underlying, circulatory disease doing the damage or a third factor underlying both the circulatory disease AND the AMD doing the damage. Inquiring minds want to know but we don’t seem to have an answer to that yet.

Because we don’t know, if you are concerned, talk to your doctor and see what he or she has to say before doing anything. Don’t make any drastic changes based on one study. Your doctor is your expert and you should make informed decisions in concert with him.

Me? My high blood pressure meds are diuretics so I don’t need to worry about the meds. However, if I had to guess – and this is a guess from a layperson – my money would be on an underlying genetic snafu wreaking havoc with both our circulatory systems and our eyes.

And until they can lift the genetic hood and make the necessary repairs on that level? Preventive maintenance, my dears, preventive maintenance. Watch what you eat, get your exercise and, yes, take your medication as prescribed.

April 12th, 2017

Continue reading “Preventative Maintenance”

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

Fair and Impartial

In the interest of being fair and impartial – even though I really am not, impartial, that is – I guess I need to put in a plug for those who are helping us. You know, those caregiver types.

‘Caregiver’ for me right now means chauffeur and someone to occasionally see or read something I cannot do myself. However, there are some of us who have caregivers with a much broader range of responsibilities.

Khan et al at Queen’s University in Kingston, Ontario completed a study on burden and depression in caregivers of the low vision and blind. One of the things they found in their research review was 50% of legally blind or no light perception patients were separated or divorced within 1.6 years of the onset of visual impairment. This was not related to the length of the relationship.

In other words, if you are low vision and you want to strangle your spouse or your spouse wants to strangle you, there is precedent in the literature!

Also in their research review they found spouses of people with low vision had an increased risk of poorer physical and emotional well-being over 5 years. Perceived burden on caregivers per Khan et al was related to limitations imposed on the caregiver’s personal time. Time spent in direct care and supervision of the visually impaired was correlated with depression. The more of a time commitment, the greater the depression.

What can help? Caregivers of those who had gotten low vision services did better. It appears having all of those gadgets and knowing how to use them does have some extended benefits.

The Mayo Clinic agreed that longer hours of caregiving lead to greater stress. They made a list of things caregivers can do to make things easier on themselves. It does include getting help to spread the burden . It also suggested setting realistic goals (“It’s a bird! It’s a plane! No, it’s Super Caregiver!”) and getting connected to others in similar situations. The ideas are not highly original but they have often worked.

So it would appear if we want to stay out of divorce court – or criminal court on charges of murder! – we should finish a visual rehabilitation course so we can stay less dependent on a caregiver. If this is not possible, allow a second person to come in to help. According to Khan et al, 2.5 hours daily of direct care is the magic number. Above that the burden and depression increase in earnest.

And in related news, I rode my bike today! 6.21 miles. Not great, but it proved it can be done. An increase in my independence that will take some of the burden off people supporting me. Good deal!

Even better, I got back to some of my ‘normal’. I used to ride and stop at the convenience market for a caramel ice cream cup. Today it was as good as I remembered it. Yum.

written April 2, 2017

Continue reading “Fair and Impartial”

Be a Goose

I have always lived under the Atlantic flyway. Every Fall and Spring of my childhood, my father would call me outside to listen. The geese were migrating, flying high. In the Fall their call was the most mournful and forlorn thing I had ever heard. Funny how that same call in the Spring was so joyous and hopeful. The geese are going North! Winter is nearly done.

In real-time it is March. Walking the dog tonight I stopped to listen to two flocks. They were flying high. Headed north. Spring is on its way. Life and hope are coming to the North.

You can learn a lot from birds. Do you know why geese migrate in V formation? It turns out the V is aerodynamically efficient and conserves the energy of the individual birds. Another fact is geese take turns flying point. Cutting the path is tiring. When the lead bird is weary, he drops back and another goose takes the job. Teamwork at its finest.

End of ornithology lesson.

Started reading an article on suicide for continuing education credits. (Geese and suicide all in one page? Hold on. I will tie them in.) I am only about a third of the way through the article but have already picked up a few interesting points. For example, the highest risk group for suicide is between 45 and 65. The next most vulnerable age group is the over 85 group. That sounds like the ages of many of us.

Chronic illness is a factor in suicidality. While pain is closely aligned with thoughts of suicide, suicidal ideation also increases if people believe they are a burden or if there is a traumatic event. Like vision loss, for example.

The rate of accomplished suicides is higher in the elderly. One more thing age and experience has taught us to be better at. Yikes.

Other factors listed by Van Orden et al are things like living alone, mental illness and grief. Also listed were frailty and a generation bias against seeking treatment for mental health.

Another thing I learned was not surprising but definitely worth mentioning. Social support and connectiveness decreases the risks of suicide. Having a social network of supportive people is protective.

Which circles me right back around to geese! Geese migrate successfully because they do it as a flock. They help one another out by trading off who is on point when they fly. Another thing I did not mention, about a flock on the ground. Have you watched them? Did you notice there is always at least one head up, looking around and on guard? (Alright, so I  lied. The ornithology lesson was not quite over.)

Page points are: 1) in Spring, geese are a sign of renewal and hope. Also they are an excellent example of animals working together for the good of all.

2) Older people with chronic conditions are at greater risk for suicide. Social connections are an excellent protective factor.

3) Be a goose. Have hope. Get social support.

Told ya I could tie them together!?
Continue reading “Be a Goose”

Out of Gas

I ran out of gas about an hour ago. Right now I am coasting into an early bedtime pretty much on fumes.

It has been a busy week! Sunday I attended two, blues concerts in a local town. The region is trying to be a destination for those who enjoy the arts. Doing well on that goal. Monday I skied for four hours and did hip hop class for an hour. Work, doggie walks, a little housework and a few more exercises classes later and I am fried. Extra crispy.

There is a doubleheader, yoga class tomorrow afternoon. I would love to go, but I am not going. My knees are whimpering. There are things to do at home. I am ready for a semi-restful day right where I am. Home.

I love being busy but there is such a thing as balance. Just like I cannot sit and stare at the walls 24/7, I cannot go screaming, full tilt 24/7 either. Every once in a while I need to say ‘enough’. (OK, it generally is I say ‘too much’ but you get my drift.)

Many of you may feel you get too much downtime but rest is not a bad thing. Not a bad thing at all. Going back to dialectic philosophy (who said this site is not educational?!?!??), opposites define one another. You cannot understand the light unless you have experienced the dark. We need an appreciation of both to truly understand either.

So, if you are getting too much down time? Rev it up! Too much going on? Calm it down a bit. You know your own balance point.

As I said, rest is not a bad thing. While you may see Sanja Gupta and Deepak Chopra as more media folk than experts, they do make a few good points. Quoted in 4 Surprising Benefits of Rest, these gentleman point out there is a lot of you that doesn’t get any attention when you are too busy with outside events. Give yourself time to experience yourself and see what is inside.  Rest can also help you be a better problem solver.

Going on to more – what? Mundane? Practical? – reason for rest, you need sleep to consolidate new learning. A dozen different sites will tell you sleeping after study will give you a better chance of retaining the knowledge. Exercise tears down muscles but a rest day allows your body to build them back up. Bigger! Stronger! Better! Rest reduces stress which reduces the stress hormone, cortisol, which helps you lose weight.  Also, without sleep, your organs all shut down pretty much at one time and you die. Ugh. Pretty practical reason for sleep. (Why? They are working on that but so far it is looking like sleep is when the housekeeping unit goes to work in your brain. Without sleep and cleaning, everything goes on the fritz in the control center that is your brain. Massive organ shut down. The end.)

So yes, I am now going to exercise in a different manner. I am exercising discretion, getting a nice, long night of sleep and taking tomorrow to stay home, get some things done and not do any strenuous exercise.

activity<–>BALANCE<–>rest

Continue reading “Out of Gas”

Do As I Say

Happy Saturday! Welcome to Presidents’ Day weekend! (In real-time, of course.)

I had a nice, long conversation with a representative of the International Macular and Retinal Foundation (IMRF) last evening. (Based in Maine. With a name like that you would think London, Paris, Zurich.) They came upon this website and liked it! (Flattery may not get you everywhere with me, but….OK, so I’m an attention junkie; OK??) Thank you IMRF.

The IMRF publishes self-monitoring tools under the name KeepSight. They sent me a cute, little booklet with basic AMD information, puzzles and different monitoring grids. They are free. IMRF is hoping to spread them around to not only us AMD types but also to doctors’ offices and other places people at risk may congregate. What they are trying to do is stop the progress of dry to wet before severe damage is done.

OK. Let’s stop here for a second. Don’t freak out. According to Bright Focus, only 15% or so of us with dry progress to wet. Lin just wrote a piece on the two types of advanced AMD. They are wet and GA, geographic atrophy. The second one is me; remember? I just got moved to appointments every six months because with my level of macula loss through GA, my chances of changing to wet are slim. Thank God. The more severe damage is done in wet.

Anyway, in the interest of full disclosure – in other words, I can’t lie to save my life so I stopped trying! – I admit I am not big on self-monitoring. My chances of progressing to wet are slim and I am, by nature, a bit of a rebel. However, that is not going to keep me from pulling the old “do as I say, not as I do!” trick on you.

Most of you have a fair amount of macula left and are in the earlier stages of the disease. Do you know you are not going to be part of the 15% that goes wet? I sure don’t. Which means you should self-monitor your vision.

Mayo Clinic gives the following symptoms for wet AMD and an eye bleed:

  • Unusual distortions – that means the wiggles and things with the tops cut off and moved over
  • Reduced central vision
  • Decreased intensity and brightness of colors
  • A well-defined blurry or blind spot in your visual field
  • A general haziness of vision
  • And the important one: Abrupt onset and rapid worsening of symptoms.

In geographic atrophy my macula has been slowly deteriorating. The two times I had a rapid decline in vision scared the daylights out of me and sent me off to the retinologist the same day. If you have a rapid decrease in vision, you should do the same.

The KeepSight booklet has some nice grids and examples of what a problem may look like. If you can’t get a hold of one of their booklets, at least print off a copy of the Amsler Grid and tack it on the fridge. Then use it! Remember, do as I say, not as I do! Continue reading “Do As I Say”

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