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• anyone game to talk?
• Posted: 2007-09-14 19:22:23 By Debra U
• It's 7:20. I have mascular degeneration and can't seem to cope with it. I do not want to get dressed or leave the house. I'm in sorry shape.
  Lowly Worm

• Re: anyone game to talk?
• Posted: 2007-09-17 17:25:02 By Sharon F
• I was recently diagnosed with macular degeneration and I am only 41 years old. I understand how you feel as it has rocked my world. I went through the depressed stage as well, not wanting to get out of the house or get dressed. It is very important to have a support system. Do you have one? I also have made positive changes that I believe will slow down my progression. (vitamins, healthy eatimg and a strong belief in GOD) I know this is easier said then done. I am just taking one day at a time, trust me I still cry alot. I think it is important to understand what stage you are in and the size of the drusens as this can be a very slow progressing disease.
  Fischer

• Re: anyone game to talk?
• Posted: 2007-09-18 09:22:41 By Mary S
• Hello Deb,
  so sorry to hear that your mood is low and energy is also down. This is a terrible disease for all of us. I have had mac degen for several years, I am currently 58. Over the last few years what I have learned is .
  there will be ups and downs in your mood periodically. It is the nature of this beast.
  As is there is always changes that can occur each time you visit the RS.
  
  I normally try to give myself about 3 days to feel sorry for myself, and upset over what is ever going on. then I kick myself back into the world and life again.
  
  Focusing on the disease is not going to make it go away. And if we just think about it all the time, we become a victim to it and its effects.
  
  If no one had told you , that you had mac degen, what would you be doing right now?
  
  that is the question to ask yourself, and then go and do it.
  
  If you don't you will rob yourself of things that you enjoy and still can enjoy.
  
  Is that fair to you? come on now. You are worth the best that you can be, right now, and doing the things that you love and can do right now.
  
  So get up, get out of bed, get washed and dressed, call up a friend and go treat yourself to brekfast or luch or dinner today, at some nice place.
  
  Then, take a look around at the Fall colors that are out there,and take them all in while you take some nice deep breaths.
  
  This time of year is so beautiful, colorful, and the temperature is normally at a level that is also comfy in most places.
  
  Just take one day at a time right now, read all that you can, educate yourself as much as possible. Know that there are many of us here that are in the same boat with you, and we will all keep one another afloat thru this journey.
  
  Reach out talk to us, ask lots of questions. those of us who have been here for awhile will answer you, or send you in the right direction to find the answers.
  
  We all have our days when things get to us, and we cry, and we wonder why me?
  but many of us have learned that while it is ok to feel these feelings, we have to take some sort of action, and keep going, to preserve what we can and to learn how to adapt and cope in a new world that is coming our way.
  
  Hope that a Cure will be found in your life time, or even a bionic eye will be developed.
  and live for that hope.
  As science is always evolving, learning more and more each day, and trying to help us with what they can.
  
  Reach out to others when you feel ready, as this will also help you. Trust me on this one.
  And offer them information that you may have found.
  
  Sometimes in helping others we realy help ourselves in so many ways. You will realize this one day when you get to that point.
  
  However for now, think, read, breathe, talk, think some more, breathe some more and know that we are here to help you thru this.
  
  I hope to hear from you sometime soon.
  What has your RS doctor said?
  Do you have dry or wet md?
  will you be receiving any treatments?
  
  Keep a healthy diet going of colorful vegies and fruits, and low fat, no trans fats. whole grains, omega 3's and B vitamins, foods high in Lutein, and antioxidents.
  
  Kale, Spinich, Collard greens, Pumpkin, Dark yellow or orange Squash, eggs and especially the yolks, red and green and orange and yellow peppers. carrots. berries, like blueberries, black berries, strawberries, oranges, pomegrants, and so on.
  
  are just a few things that will be good for you and for your eyes.
  
  Best wishes.
  mar

• Re: Re: anyone game to talk?
• Posted: 2007-09-18 11:18:46 By Sharon F
• Mary, WOW that was a very powerful message, as it helped me as well. Thanks. this definately is something that you handle on a day to day basis. I know my fear is if my macular degeneration will turn to the wet form. Also I have read so much on the web that I sometimes feel that i am receiving conflicting information. I have seen 3 Retina specialist one of whom siad I will lose 50% of my sight in one eye in the next 5 years. One said tha my macular degeneration could take 30 years before anything happens. That confuses me. You have said you have had it for some years, how many? and what is the one thing that really keeps you motivated through all of this??? Thanks once again for all of the postive things you wrote for Deb because it helped me as well.
  Fischer
  Sharon

• Re: Re: Re: anyone game to talk?
• Posted: 2007-09-18 14:56:14 By Mary S
• Hello Sharon,
  I was diagnosed in NOvember of 2003 when I went in for a routine eye exam. I have worn glasses for nearsightedness and astigmatism since the age of 10. and Bifocals to boot.
  
  It certainly was a shock, as it is for most people who hear, "you have Mac degen"
  I was already at an intermediate stage in my left eye, so apparently it was there for awhile before my knowledge.
  
  My left eye went over to the wet form of md around Sept, 2004.
  
  I went right away to the rS, and was examined,and talked to about visudyne and PDT.
  my knowledge of PDT and visudyne at that time was limited , and I was concerned that the cool laser could contribute to some scarring. I was told that the scarring from the wet, would be much worse if I did nothing.
  
  But after starting at 20/20 vision and having 4 of these treatments, I had developed quite a significan scotoma.centrally. my vision went to 20/150 and I could no longer see faces or read with that eye.
  in time however, my vision improved to 2-/80 but then quickly went back to 20/100-20/150
  there is an edema issues with wet md, and I do believe that when my macula swells from the debrie, and disease process, that my vision worsens.
  then if the swelling leaves it seems to improve.
  this is my take on it.
  
  My right eye is dry, it is going into intermediate md, now after 4 years time. I am just praying that it stays dry.
  
  my vision fluctuates in that eye from 20/20 to 20/30 and that is the number corrected with glasses.
  
  I am no longer receiving treatment for my left eye. MY choice. Lucentis and avastin had come out, but I do not want to have to go the route of the shots in the Left eye.
  personal preferance.It was already centrally scarred pretty badly, and I just did not think that puting myself thru those shots would do much for my eye.
  
  I work 32 hours a week sometimes a little more than that. Take care of my Grandson, and ageing mother.
  so I am busy. Busy helps, no matter what type of chronic long term health problem one has.
  You just have to learn how to balance, the busy time with time for yourself also.
  that part tends to be a little harder to accomplish.
  
  But in order to keep going on a daily basis I have found that over extension of ones self is not a good thing in general, let alone when you have health issues.
  
  So Balance of a schedule is Important.
  Health eating is Important:
  getting outside in the sunshine, while wearing a large brimmed hat and good sun glasses is also important.
  One must have fresh air and sun, but also take precautions to guard your eyes from the sun, as it does add to the damage that we have.
  
  Find something that you enjoy and do it.
  Find something that your passionate about and Do that too.
  
  make sure you give yourself time for these things.
  Learn not to heavily rely on others , but rather ask for help and accept it if it is offered and you are in need of it.
  
  You do not want to burn out the people around you either.so take care to do Normal Activities with your family and friends, and don't bring up the old eye balls, unless you realy need too or are asked about them.
  
  People who do not have this disease do not understand the Full Impact of it on those who have it.
  
  So find a support group, on the net, or one in your area, and attend or pop in from time to time, and leave messages, eg, like here at FFB
  or at http//:www.maculardegeneration.org.
  
  There is a book by
  Dan Roberts, called md the fist year. I believe that is the title. ( sorry I have not read it personally but other have and said that it was very helpful)
  
  It is funny that you say I am so positive. there was a time I was very negative about this disease. and at times I still can be.
  It is not an easy disease to go thru.
  However, one thing I learned thru life is you can not allow yourself to be a victim to anything. If you do, you are just victimizing yourself all over again.
  You never have a life. Your allowing whatever it is that has crept in to have Control over you.
  
  One must take back Control. And since we can not make this disease go away, how do we do that?
  
  Well we do it by Living our lives the best way that we can,each and every day.
  Doing the things that we enjoy, love, have passion for, and being with the people we care about.
  
  We do not allow this disease to take that away from us.
  That is how we gain control back of our lives.
  
  Sharon, it did not happen overnight.
  It has taken me near 4 years to get to this place.
  Understand, that it is very scary to hear that you have md, and will loose your central vision.
  It affects so much of ones life, if you allow it to. that is the magic word. allow.....so we have to figure out in our own way, how we will not allow this disease to take from us those things we cherish.
  Yes the vision will eventually go, unless our wonderful scientist, find the cure, or a better way to help us with this.
  
  What won't go is all those things that are around you, the people who are your friends, your family, your cherished memories, and other things of importance to you. they will still be there.
  So one has to find a way to incorporate them into his/her daily life.
  
  No it is not easy, and you will probably struggle do well struggle again. Because this disease takes time we go thru mini grieving for the loss of our vision each time a piece of it is lost.
  And we certainly revisit the " Feelings" of anger, disbelief, loss, sadness, and so on.
  So it is a continual on going process.
  One has to put some sort of limit on it.
  eg, my 3 day feel it and get back out there to life routine.
  I watched my father go thru this, disease.
  He never complained to me, he sang in his church choir, and tried to read his books on the church and religion each and every day, It would take him a long time to do things, read and do other tasks, but he kept on trying to do them.
  My mom tells me he would get frustrated when he was at home alone, with her and express his frustration in various ways.
  So, you see, as stoic as he was, he had those " feelings " that crept up in there at times too.
  
  You just have to know you can't escape from them happening at various times, and accept that they will and learn how to move on from them in a reasonable amount of time.
  
  Bottom line, the disease isn't going away. so it is US, me, you and whomever else that has it,that needs to accept the change and move on the best we can.\
  there is a book and DVD out there Called who moved my cheese.
  It is all about change, and how people work thru it. IT can help to give you some insight into the type personality you are, and how you view, change, and what you do when it happens.
  
  I highly recomend it to everyone to read.
  
  Basically are you the type of person who goes with the flo? and accepts it and moves on.
  Or the one who digs his/her heels in and struggles thru it for a long time.
  Or one who at first is resistant, but then accepts and moves along to what you have to do.
  
  I will not tell you anymore than that about the book. or the DVD, the actual DVD can be humorous to watch.
  
  I knew about this book long long ago, we had to read and watch and have sessions when things were changing at work. we worked as a group on all this.
  
  I never thought about applying it to my own personal health life until a year ago.
  
  So there is a learning curve......LOL....
  
  You asked how long it takes.
  The RS docs can not realy give you a straight up answer because it is different for every person.
  the general rule of thumb is 5 to 10 years.
  If one has wet mac degen. there is a rule of thumb that the other eye can go over to wet md within 5 years.
  
  Currently there are the injections of Lucentis and Avastin. Of which the RS docs, and researchers have said that these two drugs, can help to slow the progression of the disease down. If you have gone over to wet md.
  
  There is also the small percentage of people who , when treated early on with wet md, have had improvement or have kept their vision at 20/20-20/40 for a length of time.
  
  These drugs are not a cure. and they are not for dry md, nor will they take centrl scarring away once it is there.
  
  So the rule of thumb is to make sure you see your RS frequently and you watch for any symptoms of the wet md, and get in there ASAP if you think you have gone to wet,
  
  Then of course one must be willing to have injections into their numbed eye ball about every 4 weeks.
  
  There are folks who have had these injections for 1-2 years and have kept their central vision. So this is why, the RS docs are all excited about these two drugs.
  
  Currently there is nothing for dry md, but there are some studies that are on going for it.
  
  and there are studies useing eye drops, that are being tested.
  the hope is that these drops will stop the progression of the disease, wet and dry, and that fewer eye injections will be needed if at all.
  
  So hang in there and keep the faith, there are some things on the horizon that are being tested.
  along with Gene therapy and Stem cells,to try to curb the disease,stop it,----- and then there is the implantable telescopes for those who have lost all vision.
  none of these are out there yet, they are being tested in research studies.\
  but they look somewhat promising for the future.
  
  Best wishes to you, and like DEB, just keep reading and learning . I still am, it never ends, the learning........
  Mar
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  

• Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-18 18:09:03 By Patricia C
• Mary,
  Thank you for a great response to the newly diagonosed patient. I too have been battlimg sadness and self pity. I think I need time to do this as well. I do not want to dwell on this and I have many goals I want to achieve, such as continuing to work and to travel. I am 43 years old married and have 3 kids. I was diagnosed in Feb of 06 with Wet MD, it was devasting to me. I had not had any real eye problems and it was discovered during a routine check up for new contacts. I was sent to a RS and he confirmed it. I did choose to start the macugen treatments and I receive a round of 9 treatments. I felt like to saved what vision I had, and I did have the scarring. Last injection was Feb of 07. Doc said things look good and come back in May 07. Everything was fine at that appointment. vision was 20/50. But was told I have a cataract due to the trauma of the shots.I still was checking against amsler grid and after a few weeks of not checking I checked again in beginning of Aug. I found some changes, blamed it on the tired state I was in. waited a week and checked again, definitly a change. Got to the doctor right away. He found more leakage. Vision was at 20/80. He recommened a couple of shots of Lucentis until the bleeding stops. I had the first injection last month. I went yesterday, Vision was 20/200. Boo Hoo Hoo!!! The RS stated that he was concerned and with the lose of more vision, and The fact that I have been having more eye pain. makes him concerned. I also have been having pain in the left unaffected eye. He wanted to do another injection (which he did inject)and see what happens, He mentions that if he does not like the results, (If I lose another line) he wants to start steroids. I am not happy about that. That is the state I am still in. Hubby can't fix me and I think he just does not know what to say or do.I have talked to a few friends that are sypathetic, but do not fathom the extent of it. Thanks for listening. Sob Sob

• Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-18 20:45:43 By Mary S
• Pat.
  what an ordeal for you to go thru. I am so sorry to hear that your vision has deteriorated despite the injections.
  I hope the Lucentis works for you.
  
  3 kids eh? How old are your children?
  That is quite a bit to have to deal with along with having wet md.
  I have 3children too, but they are grown, and have their own kids now. I worry about my kids and grand children getting this dern disease some place down the road.
  seems that out of 10 kids in my dads family, he and 4 or more sibblings ended up with MD.
  
  Genetics!!!
  
  Perhaps your hubby, would read that book, md the first year. It may give him some insight into what your going thru. And another thought.... have him go with you to a support group meeting in your area. then take a pair of tinted glasses, put a black thumb smudge in the center and coat the rest of the outside of the glass with some vaseline. tell him to wear them for an hour while he tries to do some activities at your home.
  It may give him a little more insight into what your going thru.
  
  unfortunately clouding of the lens is one of the side effects of those shots, it is also a side effect of PDT with visudyne.
  and a side effect of ageing eyes.
  
  having cataracts and md is not fun. It just makes everything you look at that much more blurred.
  
  Some docs will operate and remove the lens and give you another one. even with md. some say NO dont have them removed. It all depends on the doctor and your particular case I do believe.
  
  Steroids are my friend in one respect. I have been on medrol dose packs twice now in the last couple of months for ortho problems.
  but I noticed when I was taking them, that my vision seemed to improve. I do believe that macular edema forms with mac degen and treatments, and the steroids, help to calm it down. when the edema resides your vision improves somewhat.
  
  At least this has been my experience. I do not know if oral medrol or predinsolone would have an adverse effect on our eyes. my ortho problem was such, that I had to address it at the time, and had to forgo the worry of the old eye balls. It is bad enough not to see, but to be stiff and not able to move around too easily from DJD and arthritis in most of ones joints is no picknick either. so it becomes a pick your treatment, and battle-- when you have more than one ailment going on.
  
  As I said for myself it seemed to benefit me for a time period, were my vision got a little better in that bad eye, the left one.
  I am not so certain about the inject into the eye steroids.
  never had those, and I don't want those.
  keeping my fingers crossed that I will never have to cross that bridge and make that decision.
  I have had steroid injection into my knee, but my old eye ball is another story......
  
  Cluck --cluck ---cluck...
  Nope not for this chick.
  
  keep writeing , and I do hope that you get some positive results from your Lucentis shot.
  I don't think too many people want to go thru those eye shots, and if they decide to do so, they realy deserve to have them work, and give them the best sight possible, with a stop to the leaking.
  
  have to scoot, take care, my best to you.
  Mar
  
  
  
  

• Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-20 10:29:28 By Patricia C
• Hey Mary,
  In response to your questions, I have three kids, youngest is my 11 year old son, he is in 5th grade. He likes to draw. and is fascinated with yo yo's right now. I have a 12 year old daugher she is in 7th grade and who is active in sports and likes to draw too. and I have a 14 year old daughter who is in the 9th grade and participates in color guard. I would have to say that when you first hear about shots in the eye, it sounds terrible. But the RS who administers them is so quick and careful that he has it over in a matter of a few seconds. I compared it to a recent root canal, and the root canal was far worse and lasted a lot longer. I plan my schedule around those days and make arrangements to be driven or at least driven home. It is convient that my RS is about 1 block away from my job. I don't plan any thing after an injection, I go home and rest in a dark room, due to the dilation of my eyes. I try not to have it impact my work schedule as best I can, I am self employed and that is very helpful. But it is not so bad if you have been recommended to have the shots. I was wondering Mary, are you still driving? I have to say that is something that I feel is looming in the background for me. I have trouble driving in the rain and on dark roads at night and the combo is not fun. neither is heavy traffic. too many lights and reflections. I try to limit my night driving. well I have rattled on too long. talk to you soon.
  Patricia

• Re: Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-20 17:58:04 By Mary S
• WOW, Pat,
  all tean agers!!!!
  I remember those days. hang in there,,,, yikes....
  
  In answer to your question.
  Yes I still drive, but I stay off the interstate as much as possible.
  
  I travel many short distances since things I realy need are relatively close. And I take the side streets.
  
  Yes the dark, Glare , rain and so on definatley is more difficult to drive in, with or without vision problems. So I take extra care in that sort of climet.
  
  I work outside my house and have to travel about 10 minutes to get to work.
  I work at a hospital, and my RS is at the same facility in the eye clinic.
  
  Mar

• Re: Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-20 18:02:35 By Mary S
• that was suppose to read, 10 miles to get to work, I wish it were only 10 minutes....LOL
  mar

• Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-19 04:30:55 By Mary S
• pss for all of you.
  
  There is a woman who comes to my church every so often. she has a beautiful voice and she comes to sing with our choir and do solos also.
  
  I bring this up, because when she starts to sing, no one notices that she is blind. she has a folding cane and needs help to be led back to the pew.
  
  morale is.
  Our mouths are not blind. no matter what we can not see as time goes on we are able to speak.
  
  so if your in a job that you love, teach about it, or continue to give lectures if your a teacher, or run groups and so on and on.
  
  We still will have a voice, and we still will be able to utilize materials to help us read, or to hear with our ears.
  eg, jordy, or zoom text, tapes that we can hear, or other devices that are available thru low vision or low vision aides.
  
  It may be a pain at the time we learn to use these new devices, remember, who moved my cheese and the changes we have to go thru to continue being productive.
  
  None of us have to loose the things that we enjoy. and as long as you can keep working. Their are laws thru the American Disability act were your employer has to accomidate you with reasonable items to help you to continue to function.
  keep these things in mind as you go down this path.
  mar

• Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-19 09:02:51 By Mary S
• You know.
  I was here trying to type to someone I know and e-mail in size 18 print. with the dark enlarged print and the brightness of this LCD monitor, I noted that when I shut my right eye -the good eye- I could see some of the words I had typed thru what looks like a swiss cheese scar. there are holes that are not as thick with scar tissue, and with the right sized magnification, and light and turning my head to and fro, I could read with that left eye.
  So despite the central scotoma, there are places in it, that I can still see thru.. now I was pretty close to the monitor also, maybe 18 -24 inches away.
  mar

• Re: anyone game to talk?
• Posted: 2007-09-20 12:01:32 By Patricia C
• Debra U, are you dressed yet?
  Patricia

• Re: anyone game to talk?
• Posted: 2007-09-20 18:00:26 By Mary S
• I have to add to Pats note DEB.
  Hope you have had time to do some reading, and sort things out a bit.
  I do hope that you will respond to all of us soon.
  Mar

• Re: Re: anyone game to talk?
• Posted: 2007-09-21 18:19:00 By Sharon F
• hello all. I have read the book by Daniel Roberts. ( Age related Macular Degeneration) I learned alot, but at the same time some things confused me. It states not to drink alcohol but yet he mentions that wine is good for the eyes. Any thoughts on that one, as I know during times of stress a good glass of red wine sounds great. For the last month I have totally changed my diet, to incorporate many more fruits and vegetables then i was eating, I went on the advice of the book from the highest value in leutin being kale and for Zeaxanthin being eggs, which I am allergic to so I eat lots of orange peepers and yellow sweet corn. I go back in March to have my eyes checked again and I am hoping the progression has halted or at best not gotten worse. Also I cut all red meats out of my diet and I know eat salmon. This diet change and turning to my new church is helping me. I have no kids , so it is just my husband and I. I get scared at times that this might be hard on my husband as I believe this will change his life a bit to and he is very active. I just dont want to be a burden to anyone tha tis a fear of mine....
  Everyone have a great weekend.....
  Fischer

• Re: Re: Re: anyone game to talk?
• Posted: 2007-09-21 18:32:03 By Mary S
• Hello Sharon,
  there is so much out there on Nutrition and the eyes.
  bottom line is the Scientist are still learning.
  There was the AREDS formula, then they said that too much E and Zink were not good for our eyes.
  
  then the Lutein and so on, have to be taken alone and/or with something or another to help get it into our bodies cellular structure the correct way.
  
  You would not believe how much research, myself and some of my mac degen e-mail buddies, and myopic degen buddies, did along time ago on all of these nutrients, as we were trying to save our eyes.
  I even was taking taurine, as in the literature, it had been used to prevent cataracts and other retinal problems in certain animal populations. Cats, I think...its so long ago, I would have to go back and re-read.
  
  we ate pomegrants drank pom wonderful juice, wolf berries or wolf berry juice, blue berries, strawberries, and blackberries. did all the omega stuff and looked into it, and some other things like DHA and so on.
  
  Bottom line, I occasionally take vitamin B 12 now, I try to eat a helthy diet for the most part.
  and dark colorful vegies and fruits, fish and on and on.
  
  Wine one glass a day was suppose to be beneficial to your heart and arteries. anythign that is beneficial to your heart and vascular system should be beneficial to our eyes.
  
  my motto these days, everything good but in moderation.
  stay away from trans fats,and hydrogenated anything, or any artificial sweetner, and certain food additives and dyes.
  
  good luck with your searching for these answers.
  let us know what you find.
  You have a great weekend too.
  mar

• Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-23 15:52:47 By Shirley B
• Hi All,
  I am 70 years old and was diagnosed in Febvruary of this year with early cataracts and early dry MD. What a shock! So far my vision is still 20/20 but I really would like to know when it will start to deteriorate more, and no one seems to be able to tell me that. I am taking all the pills my Dr.suggested-and am just awaiting the worst! I guess I can consider myself lucky that at least it waited till I was 70 to hit me. I am so glad I was not younger or raising my family-at least all my kids are married and gone now. I helped me to read of your cases that are so much more severe than mine-but I sort of feel like I am just waiting for the other shoe to drop.
  Terri

• Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-23 18:48:47 By Mary S
• Hello, Terri,
  Is that what you go by, as that is what you signed at the end of your message.?
  
  I am sorry that you have joined the army of md.
  Even 70 is young.
  
  20/20 is good, and you may be able to keep it there or near there for a long period of time.
  
  You did not say if yoru MD was the dry variety or wet variety, or maybe I missed that part as I read thru your message.
  
  Currently there is not treatment for the dry variety. They are testing some drops for it, to try to slow it down. but that is in the early phases of testing right now.
  
  keep the grid around and check your vision every day. if you note any changes like wavy lines or distortion, o r missing lines, make sure that you call your RS and go in and be checked.
  WET md can sneak up on you so it is important to be watchful and have changes checked out.
  
  There are current treatments for wet md, to try to slow it down, and some folks have been successful with those treatmebts in keeping their vision stable, and at levels where they can still read and see thru the central part of their eye.
  the ones that seem to be the most helpful have been AVASTIn and Lucentis, injected into the eye ball, the medicine goes to the back of the eye and slows or stops the leaqking for a period of time.
  it is the leaking in the wet form, that causes the damage to the central area of vision, the quickest.
  normaly dry mac degen is a bit slower in its progression.
  there is no real time limit, I am afraid, it is different for each individual person. some folks can loose their sight rather quickly, others are able to maintain it for years.
  
  Some of the other things you may note, as your vision progresses, is that you need more light, larger print, or a magnifier to see small objects, and detail.
  
  It is very dangerous for us once our vision starts to change, and there is more distortion or the need for more light to focus in on objects.
  
  by that I mean, we are more suseptable to falls.
  so take care not to move to quickly on stairs, or thru halls , and if you have scatter or throw rugs on your floor you may want to re-think what your needs will be in or on those areas in the future.
  
  Also pouring liquids, can be or get tricky, so take care not to burn yourself, or pour liquid on a floor, not see it then slip.
  
  It does not sound like you have these concerns to think of just yet, so put them in your back pocket for now, but be mindful that they are there, and you may need to make some changes in the future.
  
  I am 58 and have had several falls already due to my vision. one landed me in the Emergency room with a dilocated shoulder. one I could not tell the floor was wet at work, and the cleaning person said it was dry when I asked, I went for quite a slide, and pounding on my right hip and leg. fortunately I was bruised, and just sore, with no major injury as far as they could tell when I went to have it looked at.
  
  So please be careful. make sure too, that hallways and door wairs, and staircases have some sort of lighting in them for yourself.
  
  you will learn as u go, what you will need to look out for, just want to give you the heads up, as we sure don't need joint, muscle or bone injuries from falling on top of having this md.
  
  
  I think I have cataracts too TErri, I got a couple of my reports on my eyes, and it looks like I might have early ones in both eyes, I will ask my RS about it the next time I see him.
  
  I may start taking some nutrients that I had stopped, if that is the case, as one of them was suppose to be helpful in animal studies with cataracts.
  Just keep informed, read as much as you can, be mindful of changes and have them checked out. But please, do not stop living. keep on with the things that you enjoy. You may be one of the lucky people who keeps that 20/20 for a long time, as your diagnosis has come at a time when ther are more treatments available .
  write when ever you want ,those of us who pop in here love to hear from the folks who are lurking and reading.
  I think that support of one another, even on the boards can be helpful,to all of us, and to you.
  So write as often as you feel you want to.
  best wishes to you.
  mar
  
  

• Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-24 14:39:40 By Shirley B
• Hi Mary,
  Sorry for the confusion about my name. Legally I am Shirley, but I go by Terri about 98% of the time. I have the dry kind of MD so far-and hope it stays that way. I do check the Amsler grid occasionally, but didn't realize how important it was to check it most every day--I will do that from now on! Thanks for the tip.
  One of the messages I read said not to take zinc, but I thought that was something we md patients should take. I take beta carotene, lutien and copper along with the zinc and flax seed oil capsules. I take loads of other vitamins and minrerals too, but those were mentioned in regard to the md. I also use sugar substitutes in my tea and on cereals--to watch my weight--now I am wondering.......
  Thanks for the tips on slipping on wet spots on floor etc. I have osteoporisis and have 2 fractures already! I fell about 3 years ago and fractured my pubic bone for which there is no cure, but it is almost painless now. The pain I have now is from an old wrist fracture-done around 3 years or more ago. I didn't even know I did it, just knew that it hurt. My Dr. exrayed it and said it definately was fractured but it was too late to set or cast it--so I suffer a lot with that. I do take 500 mgs of Naproxen twice a day--and now will be even more careful about falling.
  Again, thanks for the tips!
  Terri

• Re: Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-25 00:51:41 By Mary S
• Hello Terri,
  late night for me at work, just got in. so I will be brief.Glad to hear your still dry.
  sorry to hear about the osteo. fossamax? or boniva?
  zink in abundance has shown up in the retinas of the cadavars that they autoposied.
  so there is some concern that too much of it is bad for our REtinas.
  I am more in favor these days of doing every thing in moderation.
  but that is me.
  If you smoke, you must watch the beta carotine, too much is not good at all in smokers.
  I think it was linked to cancer. or other pulmoary problems.
  I knew a doctor who once said. "every medicine that you put into your body is poisoin, you just have to pick the right poisoin and the right amount to benefit.
  and always remember, it is easier to start with a low dose and increase, much easier than taking too much of something right off the bat, and trying to back tract to a lower dose.
  
  so that is why I always say. eveything in moderation.
  Good night.
  mar

• Re: Re: Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-26 19:07:12 By Shirley B
• Hi Mary, What do you do that keeps you at work till almost 1AM? Are you married? Have kids? Is your vision good enough that you can see your monitor ok and that you can hold down a job? Sorry to be so nosy-but this is all so new to me! Thanks for the tips about the zinc, but I only take a small amount in with my Calcium. I take Fosamax once a week. Will take another bone scan next June to see if it is helping. I tried taking another bone scan this past June but was told that Medicare would not pay for it until there had been a 2 year lapse. One of the posts in the forum mentioned insurance not covering eye injections---do you know if medicare pays for them? Also-what do you know about cataracts and md? I thought I read somewhere in the forum that cataracts were not removed if you had md--or did I read that wrong? I feel so stupid-but I want to learn all I can about this disease.
  Thanks,
  Terri

• Re: Re: Re: Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-26 21:13:48 By Mary S
• 
  Hello Terri,
  just got in from work,so
  Just a quick responce to some of your questions. I can go into more detail another day.
  
  I am a Nurse: R.N. I still work and I have to work shift work . I have been on my unit for close to 21 years.
  currently I am not suppose to work more than 32 hours a week,doctors orders.The lst couple of weeks, I ended up working more, secondary to a staffing crunch and high patient acuity.
  
  However I am going to have to say NO, and stick to the hours my doc says, because I am not feeling it in my joints again, and totaly wiped out.
  
  I have little vision in my left eye. 20/150, very distorted,with a central scotoma,( blind spot) so I can not see faces or read with that eye.
  
  my right eye is 20/25 to 20/30 . blurred.
  and this is corrected vision with prescription glasses. I believe from what I read that I also have early cataracs in both eyes.
  
  I can drive, and am on a restricted licence I have extra mirrors and bells and whistles on my car so to speak.
  
  Night time is more difficult, with the glare from headlights along with the dark road,. So I stick to slower side streets, and take my time.
  
  I stay off the beltways and interstates at night, and only use them minimally during day light hours.
  
  My choice....
  
  I do have peripheral vision in the left eye.
  I use extra lighting, enlarge print, and use magnifiers when necessary.
  
  Cataracs happen to many people when they age.
  In md. they can happen due to a varitey of reasons.
  Including being caused by treatments, such as visudyne and PDT, and any of the injectable medications, eg, lucentis, avastin, macugen, kenalog.
  
  having them removed with mac degeneration is controversial.
  some RS docs say NO. others say it is ok.
  it depends on the person, how ripe the catarac, how bad the mac degen, how much the catarac affects the vision, and a boat load of other things I am sure.
  
  I also believe that the eye needs to be stable, in other words , no leaking or wet md going on at the time.
  
  Hope this helps,
  mar

• Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-23 18:48:49 By Mary S
• Hello, Terri,
  Is that what you go by, as that is what you signed at the end of your message.?
  
  I am sorry that you have joined the army of md.
  Even 70 is young.
  
  20/20 is good, and you may be able to keep it there or near there for a long period of time.
  
  You did not say if yoru MD was the dry variety or wet variety, or maybe I missed that part as I read thru your message.
  
  Currently there is not treatment for the dry variety. They are testing some drops for it, to try to slow it down. but that is in the early phases of testing right now.
  
  keep the grid around and check your vision every day. if you note any changes like wavy lines or distortion, o r missing lines, make sure that you call your RS and go in and be checked.
  WET md can sneak up on you so it is important to be watchful and have changes checked out.
  
  There are current treatments for wet md, to try to slow it down, and some folks have been successful with those treatmebts in keeping their vision stable, and at levels where they can still read and see thru the central part of their eye.
  the ones that seem to be the most helpful have been AVASTIn and Lucentis, injected into the eye ball, the medicine goes to the back of the eye and slows or stops the leaqking for a period of time.
  it is the leaking in the wet form, that causes the damage to the central area of vision, the quickest.
  normaly dry mac degen is a bit slower in its progression.
  there is no real time limit, I am afraid, it is different for each individual person. some folks can loose their sight rather quickly, others are able to maintain it for years.
  
  Some of the other things you may note, as your vision progresses, is that you need more light, larger print, or a magnifier to see small objects, and detail.
  
  It is very dangerous for us once our vision starts to change, and there is more distortion or the need for more light to focus in on objects.
  
  by that I mean, we are more suseptable to falls.
  so take care not to move to quickly on stairs, or thru halls , and if you have scatter or throw rugs on your floor you may want to re-think what your needs will be in or on those areas in the future.
  
  Also pouring liquids, can be or get tricky, so take care not to burn yourself, or pour liquid on a floor, not see it then slip.
  
  It does not sound like you have these concerns to think of just yet, so put them in your back pocket for now, but be mindful that they are there, and you may need to make some changes in the future.
  
  I am 58 and have had several falls already due to my vision. one landed me in the Emergency room with a dilocated shoulder. one I could not tell the floor was wet at work, and the cleaning person said it was dry when I asked, I went for quite a slide, and pounding on my right hip and leg. fortunately I was bruised, and just sore, with no major injury as far as they could tell when I went to have it looked at.
  
  So please be careful. make sure too, that hallways and door wairs, and staircases have some sort of lighting in them for yourself.
  
  you will learn as u go, what you will need to look out for, just want to give you the heads up, as we sure don't need joint, muscle or bone injuries from falling on top of having this md.
  
  
  I think I have cataracts too TErri, I got a couple of my reports on my eyes, and it looks like I might have early ones in both eyes, I will ask my RS about it the next time I see him.
  
  I may start taking some nutrients that I had stopped, if that is the case, as one of them was suppose to be helpful in animal studies with cataracts.
  Just keep informed, read as much as you can, be mindful of changes and have them checked out. But please, do not stop living. keep on with the things that you enjoy. You may be one of the lucky people who keeps that 20/20 for a long time, as your diagnosis has come at a time when ther are more treatments available .
  write when ever you want ,those of us who pop in here love to hear from the folks who are lurking and reading.
  I think that support of one another, even on the boards can be helpful,to all of us, and to you.
  So write as often as you feel you want to.
  best wishes to you.
  mar
  
  

• Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-10-05 14:46:45 By Shirley B
• Hi Mary,
  Have not seen any new messages from you so thought I'd drop in and say "hi." I checked on the calcium I take and it includes 25 mgs of zinc! And I take 3 a day for the osteo! Yikes! I guess I could find another calcium supplement-but on the list of things I should take for dry MD (from the Dr.) it listed zinc. I go back in Jan. or Feb. so will check with Dr again.
  Hope you are doing well.
  Terri

• Re: Re: Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-10-05 15:30:07 By Mary S
• my pc internet connection is having difficult, dropped by the local library to use theirs for a minute. saw your message. comcast is suppose to come out on tuesday to try to problem shoot the reason why I am having intermittent connections.
  hope all is ok with you..I am fine.
  thanks for asking. will get back to you later on when things get straightened out with my home computer.
  mar

• Re: anyone game to talk?
• Posted: 2007-09-23 21:58:07 By Ann C
• Mar, you mentioned staying away from artifical sweetners in your response. What is the reason for that? I asked my RS about suppliments but he is not a fan of them. Although he did say to stay away from zinc. He said one of the worst cases of wet md he saw was a patient overloaded with zinc in their body. A question I have is that I had my 4 shot of Avastin on Thur. my vision went from 20/25 to 20/30 even with the shots. I realize that 20/30 corrected vision is still great but it did go in the opposite direction in spite of the awlful shots. Will it continue to slide downward even with the Avastin? I am also doing hyperbaric oxygen therapy once a week. My GP feels that the oversaturation of oxygen would be good for the condition. It wouldn't hurt anyway. I am just discouraged that the vision is still slipping and wonder if the shots are worth it since they are not covered by insurance as the oxygen is not as well. The depressing part is that I feel I need to do these treatments but wonder if the financial strain is worth it.
  Ann

• Re: Re: anyone game to talk?
• Posted: 2007-09-25 01:00:58 By Mary S
• Hello Ann,
  just seeing your message/
  Mac degeg is a progressive disease. the shots help to slow the process down,but they will not stop the disease process from re-occuring.
  your vision is still pretty good.
  I would discuss this question you have with your family and doctor, and go from there.
  they shots might buy you some extra time to keep your central vision.
  
  There are some people who say that they have gotten shots once every 4 weeks for 2 years, but can still see centrally. their vision is not always as clear as they would like but they still read , drive and see faces.
  then there are some, who dispite the shots their vision deteriorated and it is a bit more difficult for them. I think some of it has to do with the type of md that you have, and how soon you caught the wet and had it treated.
  
  u are correct about the zink, too much of it is not good for our retinas.
  
  sorry I am a bit tired tonight. more later.
  keep the faith, there might be a better treatment down the road.
  or a cure.
  
  best wishes to you.
  mar

• Re: Re: anyone game to talk?
• Posted: 2007-09-25 01:02:50 By Mary S
• Ann, pss
  I read were they are trying to think of a better delivery systom for the anti VEGF drugs. one that does not include shots.
  keep your fingers crossed.
  Mar

• Re: Re: anyone game to talk?
• Posted: 2007-09-25 08:28:26 By Mary S
• On hte artificial sweetners.
  I do not like anything artificial and with chemical componets to make them that way.
  
  There has been alot of controversial
  literature out there over the years, as to if these sweetners cause a variety of health problems or issues.
  
  they flop back and forth from yes to No.
  
  So I would rather use some Natural product.
  And I do.
  I buy raw sugar, or as raw as I can get it.
  the crystals are larger, and the mollasses that is in the sugar, is still in tact. It is more expensive than its white counterpart.
  but......... I believe it is healthier.
  not as much chemical bleeching to take away all that nature has put in.
  
  mar
  

• Re: Re: anyone game to talk?
• Posted: 2007-09-25 09:44:27 By Mary S
• On hte artificial sweetners.
  I do not like anything artificial and with chemical componets to make them that way.
  
  There has been alot of controversial
  literature out there over the years, as to if these sweetners cause a variety of health problems or issues.
  
  they flop back and forth from yes to No.
  
  So I would rather use some Natural product.
  And I do.
  I buy raw sugar, or as raw as I can get it.
  the crystals are larger, and the mollasses that is in the sugar, is still in tact. It is more expensive than its white counterpart.
  but......... I believe it is healthier.
  not as much chemical bleeching to take away all that nature has put in.
  
  mar
  

• Re: anyone game to talk?
• Posted: 2007-09-23 21:58:19 By Ann C
• Mar, you mentioned staying away from artifical sweetners in your response. What is the reason for that? I asked my RS about suppliments but he is not a fan of them. Although he did say to stay away from zinc. He said one of the worst cases of wet md he saw was a patient overloaded with zinc in their body. A question I have is that I had my 4 shot of Avastin on Thur. my vision went from 20/25 to 20/30 even with the shots. I realize that 20/30 corrected vision is still great but it did go in the opposite direction in spite of the awlful shots. Will it continue to slide downward even with the Avastin? I am also doing hyperbaric oxygen therapy once a week. My GP feels that the oversaturation of oxygen would be good for the condition. It wouldn't hurt anyway. I am just discouraged that the vision is still slipping and wonder if the shots are worth it since they are not covered by insurance as the oxygen is not as well. The depressing part is that I feel I need to do these treatments but wonder if the financial strain is worth it.
  Ann

• Re: Re: anyone game to talk?
• Posted: 2007-09-24 17:02:57 By Sharon F
• Hello, all I am very interested in the ZINC. I have been taking the AREDS and they are very high in ZINC. Why is it not good for the eyes? This is very shocking and new to me...
  Once again being diagnosed at 41 years old I am trying to learn everything and trying to slow down the progression of the disease. I feel very depressed today. HELP as I need some uplifting things...
  
  sharon

• Re: Re: Re: anyone game to talk?
• Posted: 2007-09-25 09:41:15 By Mary S
• Sharon,
  unfortunately no one ever knows how we will truly be, physically until about 20 years or so goes by, and many people have used a product.
  
  During studies that were conducted on cadavers who had macular degeneration it was uncovered that there was very high zink levels in the retinas of those who had the worse forms of the disease.
  I will try to find the article and put a link to it here so you can read it for yourself.
  I think it came out of some research in England.
  and it was about taking 80 mg of zink over a period of time.
  mar

• Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-25 16:03:19 By Sharon F
• Thank you. Have you heard of Dr Kondrots3 day program: here is the link, I find this very interesting: http://www.healingtheeye.com/staff.html
  I spoke to the admin and she says the office believes when things happen to our eyes there is always a under lining issue else where in the body, and that issue needs to be dealt with to help inmprove the eyes. I have a kideny diseaes so I wonder if that makes the macular worse. Also have you heard about microcurrent therapy.
  Have a great day.
  Sharon

• Re: Re: Re: Re: Re: anyone game to talk?
• Posted: 2007-09-26 12:52:44 By Mary S
• Sharon,
  Micro stimulation has been around for a long time. It was and is used in Certain pain conditions. Both internal and external stimulators are available For those folks who find it helps their Chronic Pain condition.
  
  It has been tried in Retina problems for some time now, the thought was to increase blood supply and circulation to the retina, there by bringing oxygen and nutrients to the Dying REtinas.
  
  In addition. There has been much research and correlation with C- REactive Protein and our eyes. folks with high levels of C-reactive protein are more suseptible to cardiac problems.
  
  Our Heart Health is Very Important to the rest of the Health in our bodies, along with our Lungs, and of course the Liver, filters out toxins and impurities, so it has a vital role also.
  
  Any major organ that malfunctions, can create a set up from problems to occur in other body parts.
  
  I worry about the homeopathic medication and treatments, only because there is many without scietific studies and evidence based research to back up what they claim. In addition.
  we must take care to know how these homeopathic medications, interact with say, cholesterol medicine such as Lipitor,, or a med for blood pressuere such as Lisinopril.
  
  
  There are not enough studies out there to know the interactions. Nor has enough research been done to support the claims in many cases.
  
  One must not only guard their health, but also their wallets as their are many who claim to have the knowledge of tretments and medications that will benefit our vision.
  I still see many folks out there with deteriorating retinas, so I guess they don't know about these miraculous claims, or maybe they do and they tried them, and they were not successful..
  Be careful, if their was a magic bullet, we would know it ,as the drug companies would be zeroing in on it, trust me on that one.
  mar
  

• Re: anyone game to talk?
• Posted: 2007-10-09 13:55:33 By Mary O
• Hi....Just posted a message under Echo Rx. I am also just diagnosed and don't feel too diffferently. Mary has given some great info on this chat...Keep in touch
  

• Re: anyone game to talk?
• Posted: 2007-12-08 12:12:38 By Patrick S
• Hi Debra. I have MD as well and only 38. I have three young kids. I too have been up and down. You know I was diagnosed April 07 and just had my follow up yesterday. My vision is still 20/20 in both eyes corrected and no progression was found by my RS. Since I was diagnosed my relationship with Jesus has grown. I learned (although tough at times) to trust him and I TRULY (You guys might think I am crazy) believe that if you trust in him 100% without a doubt and ask healing it will happen.
  
  This gets me going plus support from my family and friends. I'll pray for you as well.
  
  God Bless,