macular degeneration, macular, diagnosis exercise – My Macular Degeneration Journey/Journal

An Exercise a Day

Hey. It is Sunday. I have changed bedding, mopped the bathroom floor, done dishes, done laundry and written most of a psych report (why don’t people look on the backs of checklists?). I have HAD IT. No mas. Break time. The sun is shining. It is around 75 degrees outside (screwy weather) and I am heading for the deck.

Sunday has become my work around the house day. Monday it is back to the real world and if I want to get anything done at home, it has to be done Sunday.

Heaven help me when I am no longer working and don’t have the press of deadlines. Nothing will ever get done!

Feeling good about getting a pup. We picked the lively and inquisitive one. I know she may be more of a handful than any of her sisters but I need a walking buddy. I have been “going to walk the dog” for more than 60 years and going to walk by myself feels wrong.

Bringing me to the promised topic, as well as the promised nagging ?. Exercising is great for avoiding depression!

We have talked about the crazy percent of older people who are depressed and the even crazier percent of older VIPs who are depressed.

Right now many of us are not going to improve our visual standing anytime in the near future. Gotta live with that. That leaves us with fighting the second dragon, depression.

Our friends whom we have not met yet in Nord-Trondelag county Norway have been participating in a huge, as in HUGE, longitudinal health study that started in 1984. One of the things they were measuring was the relationship between exercise and depression. To begin with they found an exercise a day keeps the psychiatrist away. Those who did not exercise at the start of the study were 44% more likely to develop depression than exercisers. Total amount of exercise and depression were negatively correlated (more exercise went with less depression). However, they also found as little as one hour of exercise a WEEK reduced chances of depression by 12%!

Similar studies in Sweden and the United Kingdom found similar results. The benefits of exercise were seen in everyone, including older folks, and the intensity of the exercise did not matter. Easy was OK. Small doses were OK. The idea was to move.

Of course – pushing my luck with some of you; I know – aerobic exercise and focused attention meditation twice a week has been found to improve depression in two months or less. That research comes out of Rutgers. The Rutgers study sequenced the two, one after the other, but it is possible to get both exercise and focused attention in one activity. I am talking about the Eastern practices such as yoga and tai chi.

OK. End of lecture. Just hoping to find one convert out there somewhere. It really does work. Any brave soul out there who wants to try it? All you have to lose is your depression.

October 22nd, 2017 Continue reading “An Exercise a Day”

Come Dance with Me – Again

End of a busy Saturday. The big news of the day is we met our puppy! She is all picked out and will be ready to come home to her new mommy and daddy on November 18th.

I also got back to my exercise classes. My routine will only be in place for about a week before I go running off on vacation but that is alright. Things will settle down soon after. I hope. No more ride snafus, food poisoning or adventures for a bit.

While I like a little adventure (but not ride snafus or illness!), sameness and predictable are really good. I like the familiar, too.

Such as the Eastern screech owl ‘whinnying’ outside the window. He has been there most nights for several weeks now. According to web sources, that is a territorial defense cry. Wonder what he is defending against? Apparently there is a hidden drama unfolding in the backyard!

One of the other things I got done today was going through some Healio and Medscape posts for articles. They are still publishing that Manchester, U.K. research saying eye shots cause anxiety and depression and my reaction is still “Duh! Ya think so?”

But the next things I came upon were actually related to that article – about depression and mental functioning – and gave me more reason to harp on exercise again.

I absolutely love it when things I enjoy doing are found to be good for not only physical health but cognitive and emotional health, too! It makes me feel so righteous to say I am doing it because it is recommended even though inside I know I would do it anyway. Like being told eating an entire chocolate cake with a half gallon of vanilla ice cream is a nutritious meal! Recommended at least three times a week!

Oh well, that might be a little extreme (a girl can dream; can’t she?). However, the Medscape article ‘Dancing Keeps Older Brains on the Ball’ gave me a rationale for being the ‘grand old lady’ at hip hop class as well as one of the ‘dowagers’ at Zumba.  The article talked about how the integration of info from multiple sensory sources such as hearing the music, watching the instructor and feeling how your own body is moving in space is good exercise for your brain. The researchers discovered the demands of learning new dances every week or so in addition to the balance demands of dancing literally beef up your hippocampus. The hippocampus (seahorse in Latin as I mentioned before) is your memory center and tends to shrink in old age. The researchers ended by saying “our study results suggest that social enrichment and a combination of physical and cognitive activities influences neuroprotection best”. So there!

And of course I got so excited about having a SCIENTIFIC rationale for putting on my boogie shoes a couple of times a week, I did not leave myself space to write about the other two articles I found. But good news: one of the articles on exercise and depression talks about the levels of exercise effective for battling depression and guess what? It was practically nuthin’. See? You can read the next page even if I am being a noodge!

October 22nd, 2017

Continue reading “Come Dance with Me – Again”

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”

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”

Come Ski With Me

Here I am again. Bored. Bored. Bored. My common sense is battling with my desires. I am still a snot bubble. Hacking, snotting, I am a beauty to behold. Anyone with common sense would have gone back to bed and pulled the covers over her head.

Wake me up when I am over whatever this nonsense is. Closed until further notice.

How well do you know me by now? I have no common sense! When I was small (and OK, when I was big too), my father would tell me that, for a smart girl, I was awfully dumb. My husband just suggested I not be a horse hiney. I had remarked that maybe, maybe I could use some of this beautiful new snow to go cross-country skiing this afternoon. Punctuated by hacking and coughing, of course.

Fortunately, there is one other person who has less common sense than I do. She is picking me up at 8 am tomorrow so we can get an hour of skiing in before we both have to go to work. I love irrational people!

I also love cross-country skiing. It is excellent, aerobic exercise. After you buy your equipment, it cost virtually nothing to ski. As long as you have snow, many people can just step out their back door and go.

Cheap, accessible and can be done by the visually impaired. Good combination.

Canada has a visually impaired, cross-country skier who has competed not only in the Paralympics but also in the plain, old Olympics. Brian McKeever was diagnosed with Stargardt’s Disease when he was 19. He lost up to 90% of his vision and, of course, what is left is peripheral.

McKeever skis. Oh, Lord, does he ski. Not only does he ski, he shoots. Aided by his brother as his sighted guide and some fancy technology, the man does OK. He has medaled numerous times in the Paralympics and won a spot on Canada’s able-bodied team. That was without the guide or the technology, by the way.

Simple fact of the matter is I have no more intention to compete than – what? Name something absurd – but if McKeever is doing what he does, why can’t I go out for a spin around the park? Other than the fact I have some disease right now? I think I can!

VisionAware has a list of tips for cross-country skiing with visual impairment. You need to choose an appropriate trail. If you are going cross-country when you cross-country, a GPS is a good idea. Managing glare is always a must and those of you with a significant vision loss need a guide who knows what he is doing and can give quick, informative instructions.

Except for the glare glasses, I really don’t need any of that stuff. I will be in the local park on flat terrain and we cannot really go far. I will do my hour’s loop and consider it time well spent. Good exercise, good environment. Good company. And it can all be had even with low vision. Sweet. Continue reading “Come Ski With Me”

Come Dance With Me

There are times I don’t know where I am going until I get there. This is one of those times. In response to a request for possible coping strategies I seem to have put together a series on coping through lifestyle choices. So far I have done animals, nature and socializing. I use all of them to try to keep me on an even keel.

I am going to do one more life style choice: exercise. It is a coping strategy I use regularly. This post will focus on the benefits of one of my passions. That is dance.

I took dance lessons at 3. I suspect I had been dancing around the house for months before that.  Thus the lessons. Anyway, my recital piece was “Katie the Kangaroo”.  Maybe some of you know it.

When I was 7 my cousin was 12 and getting ready to go to dances. Since she needed a ‘practice dummy’ to work out her moves, I was drafted. It was the early 60s and I learned to jitterbug, twist, stroll, etc.

I impressed some of the ‘big boys’ with my moves but I was not going to dance with them!

When I got to junior high I found a dance partner. He was one of two black young men in my class. Being a child of the 20s and 30s my mother would ask me if I had danced with any white boys. Nope. Didn’t really want to. The white boys were awful dancers!

So we danced to rhythm and blues and ‘da funk’ in my teens. In my 20s I had what I call my ‘delightfully wasted youth’ in the discos. Three and four evenings a week I put on my 4-inch stiletto heels and my handkerchief-hemmed skirt and went off to the clubs. We danced. [Lin/Linda back again.  By the time I met Sue, she’d been dancing for some time.  I can attest to the fact that she is an amazing dancer since she ‘dragged’ me to some of those discos.  I can also attest to the fact that I am NOT a good dancer but she made the experience a hell of a lot of fun!]

A few years back I was delighted to find out dance was making a comeback! Fitness cardio-dance had taken a Latin beat. I have been in Zumba classes for about 8 years.

More recently I found a totally kickass hip hop class. It is a Japanese guy teaching black-inspired dance to a bunch of white women! I love it!

Yes, I love dance. But should a 62 year old woman be in a hip hop class? My answer is yes!

Dance is good for you physically. You improve cardiovascular fitness and muscle tone. Balance – a biggie when you are not seeing very well – is likewise improved. Lots of physical benefits.

Dance is fun! It is also otherwise good for you emotionally and cognitively. A four-month study (ideals.Illinois.edu) compared seniors being taught ballroom dance to a group of walkers. The dancers did better in reasoning, visual processing, working memory, as well as all of the psycho-social variables and sleep patterns. What were the psycho-social variables? They included anxiety, subjective feelings of well-being, and stress.

Does it matter what type of dance you do? Not a bit. Many YMCAs and community centers have Zumba Gold but it does not have to be Zumba. Ask around and you may find country line dancing, round and square dancing, clogging, whatever.

Bop until you drop! I intend to.

Continue reading “Come Dance With Me”

Teacher, Teach Thyself

Do I need to even say that I was distraught? I had been struggling at work for days.   I had been lately having panic attacks. Now I knew why but knowing why had not really helped.

One thing I knew was that I had to take a leave of absence from my employment. Tearfully, I sat in the hallway at the ophthalmologist’s office and called my employers. It was not fair to my clients to do a poor job. It was not me to do a poor job. The only option was to hang it up for a while.

It was not me to do a poor job. I had to hang it up for a while.

That weekend I continued with the panic attacks in earnest. I was waking up hyperventilating with my pulse racing. I felt as if I had a rock in the pit of my stomach. This is what dread feels like.

For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.

I will go into some of the tenets and strategies more in-depth later on in my postings. Suffice it to say now, I needed to use the first of the PLEASE strategies (PLEASE is an acronym that I’ll explain below) for dealing with Emotional Regulation—the strategy is taking care of physical illness (that’s the P).

The P in PLEASE stands for taking care of physical illness.

I was in my general practitioner’s office that Monday morning. I was totally worked up. I have been up with panic attacks at least three times the night before and I was using over-the-counter sleep medication to get any rest at all. Even worse, my blood pressure was up to 182/ 81. I think this was my personal best!

After listening to my tale of woe – about going blind, taking a leave from work, not being able to drive, and, on top of everything, having my mother-in-law in intensive care – my general practitioner prescribed psychotropic medication to help me deal with my anxiety.

DBT stresses that you have to take care of physical illness in order to deal with emotional distress. I am not a big believer in medication but having a stroke was not going to help the situation.

I accepted that I needed the prescribed medication to help control my panic.

The S in PLEASE is sleep. I wasn’t doing a lot of that but I needed to. I had never given it a lot of thought but, take it from me, losing your vision is exhausting. The emotional stress of losing your vision is exhausting.  That is one thing but just trying to SEE is another. It has been taking me three and four times as long to do basic tasks like reading my mail. I have a reputation for being a high-energy-and-always-on the-go woman. It amazes me that in the last few weeks I have started taking naps.

The S in PLEASE stands for sleep.

The first E in PLEASE is proper eating. One does not eat well when she is in crisis. In fight or flight mode, the digestive process is shut down so the blood can go to the limbs. Before I started on my medication, I had no appetite and when I did eat, it sat undigested.

The problems with being in fight or flight mode were two: first this was not some short-term problem. This crisis was going to last for a while. And two, what was I going to fight? Where was I going to flee? Better to interrupt the process so I could get proper nutrition. After all, every army marches on its stomach and this was going to be a protracted campaign.

The E in PLEASE stands for proper eating.

For you curious sorts who wonder what the A and the second E are (the L is part of the word Physical; I did not forget it), I will inform you. The A is to avoid mood- and mind-altering drugs. That has never been one of my problems, but it might be a problem for some of you. Remember that drugs and alcohol work in the short run but in the long run, your problems are still there and often worse. Escaping with drugs and alcohol is not going to allow you to learn skills to deal with your problems and they certainly will do nothing for your Macular Degeneration. End of lecture.

The A in PLEASE is for avoiding mood- and mind-altering drugs. Not one of my problems but I’m informing you of it.

The E is one of my favorite things in the whole, wide world…exercise! A little autobiographical note here. I have, in at least one aspect, lived my life backward. I was an intellectual in high school and college. Never did any physical exercise that I was not absolutely obliged to do. That changed when I was in my mid-20s and discovered STRESS. The one thing that helped to relax me and let me sleep was exercise and I was born again. It is true there is no greater zealot than a convert. I will witness to you any time you like. I may also witness to you when you don’t like.

The E in PLEASE is for exercise which is one of my favorite things in the whole, wide world.

So, be that as it may, this time of the year, I generally take Zumba, hip hop, yoga and walk. Exercise is an amazing stress reliever and great for calming crazy emotions when you are in crisis. Even though my vision had gone to serious crap, I continued my classes. I have had to. Friends and my exercise have been my lifelines.

When some people hear that I am legally blind in one eye and nearly legally blind in the other, they assume I cannot dance anymore. Not the case at all. Macular Degeneration affects your central vision. If I concentrate on looking at something off-center of the instructor, I can see the moves with my peripheral vision just fine.

Even though my vision had gone to crap, I continued my exercise classes.

People also think I am not able to navigate on a walk. That’s not true either. Keeping my head up and focusing on a spot a bit beyond where I am walking, I can see what is at my feet. The peripheral vision is still there.

When I walk, I can use peripheral vision.

Then there is yoga. Sorry all of you exercise haters, but totally blind people do yoga. ‘My’ yogini is hands-on and will physically correct your alignment, etc. I have worked with another yogini who is about 100 pounds and will literally climb on you! Yoga is great for flexibility, balance, strength and even endurance and can be done by people of all ages. Yeah for yoga!

Totally blind people do yoga. Yeah for yoga!

So, trying to keep myself from being a screaming, crying basket case, I practiced what I was preaching and used the PLEASE skills from Marsha Linehan’s Dialectic Behavioral Therapy.

I also used ABC and Master from DBT. A is accumulate positives; I got out there and had fun. I walked to the park with my yoga instructor and her two daughters. I contacted a friend and went to a blues concert. These may have been just pleasant interludes that don’t do anything to help my eyes but they helped my soul.

The A in ABC means accumulate positives. I got out there and had fun.

B is for building mastery. My job is very visually demanding. I never realized how often I needed to use my eyes. My vision was there and taken for granted. Yesterday I tried to do something I have done thousands of times over the last 38 years. It was a debacle. I cried whatever is left of my eyes out. Tried again today and it was better.

Also today, I started to use Siri on my iPad for my searches. She found something I was wondering about. Minor triumphs matter and I am trying to celebrate them.

The B in ABC means build mastery.  I started to use Siri for my searches.

The C is for cope ahead. Basically, this is a positive imagery technique. What do I imagine? I see me lecturing on Macular Degeneration to Lion’s Clubs and other civic organizations. This is, of course, after I have become the most successful lab rat in the history of Wills Eye Hospital and have written a website that is turned into a best seller for people who are suffering from AMD. There IS life after your macula does a mass extinction worthy of the Jurassic period or whenever the dinosaurs ceased to be.

The C in ABC is for cope ahead which is a positive imagery technique. I imagine myself the most successful lab rat in the history of Wills Eye Hospital.

Do these strategies always work? Hell no. I want to be back at work. I want to drive. I want to read a paperback mystery cover-to-cover in a weekend like I used to. Screaming and crying, frustration and disgust have been part of my life recently and I suspect they will continue to visit. The skills may not be 100% effective but I will take all of the help I can get at this point.

Do these always work? Hell no, but I will take all the help I can get at this point.

Written February 2016. Reviewed September 2018.

Continue reading “Teacher, Teach Thyself”

Resources

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.


AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.


Navigating

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

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

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


Topics-click below to move to a topic

Links We Like

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

See what vision is like at the various stages of AMD

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


Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

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

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Where to find services

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

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

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

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What is Stargardt’s Disease?

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

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

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

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Risk factors

Age

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

Diet/nutrition (working on this section)

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

Race

Gender

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

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

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

Connection between AMD and Alzheimer’s Disease

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Treatments

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

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Research/Clinical trials

 

How can I become a part of a clinical trial?

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

Gene Therapy

Bionic Eye/Retinal Implants

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

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

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

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 


More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 


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