Advanced Macular Degeneration

Discussion in 'Health & Wellness' started by Babs Hunt, Nov 16, 2016.

  1. Babs Hunt

    Babs Hunt Veteran Member
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    Last year I finally talked my husband into going for an eye exam and getting some prescription glasses. His magnifiers from Walmart were no longer helping him at the highest magnification they sold. During the eye exam the Optometrist told my husband that he believed he was seeing signs of macular degeneration but that he didn't have the testing equipment that could tell him for sure if this was true. He recommended further testing with a Specialist. Of course our Obamacare Health plan did not cover this so we had to wait until my husband was eligible for Medicare this year. September 1st he was officially on Medicare so I called a Retina Specialist and they did not have an appointment open until November 8th. Now he has seen the Specialist and the bad news is that my husband does have macular degeneration in both eyes, the good news (if one can call it that) is that he has the dry form which is supposed to be better than the wet form. Both forms have the same symtoms and vision loss...the dry form is just supposed to progress an a slower pace and there is no treatment for the dry form. My husband's Mom had the wet form and was considered legally blind. I have been doing research on macular degeneration and having my husband take the Areds 2 eye vitamins ever since the Optometrist said he thought my husband might have this.

    Anyway, I was wondering if anyone has this and how they are dealing with it.
     
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  2. Patsy Faye

    Patsy Faye Veteran Member
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    Babs - what are they going to do for him ?
    What's the vitamin Areds - not heard of this ?
    I wish your husband well Babs and hope the progress is good for him
     
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  3. Babs Hunt

    Babs Hunt Veteran Member
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    Basically @Patsy Faye they are going to monitor his eyes. His next appointment is in 6 months. They take a scan of his eyes, etc. on the first visit to use as a baseline, and at subsequent visits they will do more scans and compare with the base to see if there has been progression of the disease or if it has changed to the wet form.

    Bausch & Lomb PreserVision Areds 2 Formula is eye vitamins that when used in a trial study for a number of years actually was found to slow down and in some cases stop the progression of macular degeneration. There are things my husband can do to help slow the progression too such as stop smoking (but I don't see him quitting), there is a special diet that has plenty of the foods that contain eye nutrients which is something I am adding more of to our diet. Another important thing is wearing good sunglasses to block UV rays and blue light which also damages your eyes and adds to the progression of this eye disease. I ordered Cocoons which fit over his prescription glasses and block out most of the damaging rays, they are specially made so these rays can't get in from the top or sides of the sunglasses either. And the lens need to be certain tints like amber, grey, and for low light conditions yellow. This disease causes a person to lose their central vision but they still have side vision which I've read can be trained to help take over some of the central vision that has been lost.

    There is alot more out there to help with this disability now days and simple things we can do at home to help. I will put more info when I have more time.
     
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  4. Patsy Faye

    Patsy Faye Veteran Member
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    Thanks Babs - I think it is Lutein that is very good - wish you both well :)
     
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  5. Babs Hunt

    Babs Hunt Veteran Member
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    #5
  6. Patsy Faye

    Patsy Faye Veteran Member
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    Yes its not pleasant, I will be sure to put the sunglasses on
    Thanks for the info Babs
     
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  7. Martin Alonzo

    Martin Alonzo Very Well-Known Member
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  8. Babs Hunt

    Babs Hunt Veteran Member
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    @Martin Alonzo I read about that when I was doing research on MD. And if it was me I would probably do my best to try those things. But I can't even get my husband to even consider giving up cigarettes or to wear regularly the expensive sunglasses, etc. I ordered him to help slow the progression of this eye disease. The only success I have had helping him to help himself was in buying the eye vitamins which in a research trial were proven to slow down and even stop the progression of macular degeneration in many cases.

    I don't know why a lot of men are like this but I refuse to be his mother or take responsibility for his problem. I am willing to be supportive and be his helpmate but he has to take responsibility for what is happening to him. I can't do that for him no matter how much I wish I could.
     
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  9. Martin Alonzo

    Martin Alonzo Very Well-Known Member
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    Like it or not everyone has the right to destroy their own body even if it hurts loveones
     
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  10. Babs Hunt

    Babs Hunt Veteran Member
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    Now that I know so much more about Macular Degeneration I realize that the reason more people have not posted anything about this eye disease is because if they have it...they may not be able to "see" to type anything about it.

    On May 10th we will be going for the second appointment with my husband's Retina Specialist to see how far this disease has advanced in the past six months. From what has been happening during these months there has definitely been deterioration and when my husband's driver's license comes up for renewal in September he has already let me know he will not be renewing it. Already I have had to bring him to work on some mornings so I know I am being prepared for the time when he will not be able to drive any longer.

    Although my husband will not go blind all the way as he should retain his side vision....he will end up losing his central vision and he is having some of this already. I did not expect things to change this fast but they are and so I am having to do more studying on the best ways to help change things around our home, etc. so that he can still live as normal a life as possible. There is much that can be done to help with this but each individual is different so we will have to learn by trial and error....what will help my husband the most.

    I will be sharing our life with this eye disease as we go through it together....in the hopes that if someone else goes through it they will find something helpful in what we will share.
     
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  11. Babs Hunt

    Babs Hunt Veteran Member
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    Today my Honey and I had "his" six month" checkup with his "Retina Specialist"...and it was another "Nightmare on Elm Street! We spent over 3 hours in this Doctor's Office and probably a total of 10 minutes with 2 of his assistances and 5 minutes with him telling my husband that the new "pictures" they took from my husband's visit today showed great advancement of his dry macular degeneration from the first pictures taken six months ago!

    His appointment was at 10am, we arrived there and signed in a 9:45am and sat there in a waiting room full of elderly patients for almost an hour and a half before my husband's name was even called. Then the assistance led us into an exam room and had my husband cover one eye and then the other and read (if he could..which he couldn't for the most part) the letters shown on a screen on the wall. My husband then told the assistant that the glare from the light was preventing him from seeing anything for the most part....and when she turned down the light...he could read the letters much better. Now this is a person who works with macular degenerate patients full time...and one of the things that really causes seeing problems for people with macular degeneration patients is glare! And yet she never asked him if the lighting was causing a problem for him! She also proceeded to ask him if he was using his eyedrops...what eyedrops is what I wanted to know because my husband was never prescribed any kind of eyedrops! Then she dilated his eyes and led us back to another waiting room.

    About an hour and a half later another assistant calls us into another room where she proceeded to take "pictures" of the what was going on behind his eyeballs. I watched those pictures being taken and put up on the computer screen and right away I knew there was a big difference between the first set of pictures taken six months ago...and the ones taken today. When the assistance finished taking those pictures she told us the "Doctor" would be with us shortly and she left the room. Well at least she was honest because it wasn't long before he did come in and within just a few minutes this retina specialist told my husband his dry macular degeneration had advanced fast in just six months time. And then he seemed to forget that he was a specialist in this disease and started acting like "he did not know" where to go from here! Once again just like on our first visit with him I had to ask him right out the questions on my mind. I told him that he needed to understand that we were walking with this disease with blind folds on and it didn't help that he had no literature at all in his Office about what my husband was facing. His answer was basically that his Office was working on that!

    I am the kind of person who can deal with anything when I know the facts of what it is I am facing...in this case what we are facing. I may need a little time to process everything but you can't process anything when you aren't given the facts, or for that matter told anything about what you are facing! If I wasn't a researcher I promise you my husband would be up "crap creek without a paddle" because this "Specialist" isn't even in the boat with us! I gave him the benefit of the doubt six months ago...but this time he proved he is not there to help us...but only to collect the money he gets from having a degree that says he is a specialist. He's nothing but an idiot...and we would be idiots to go back to a man who doesn't even know enough to share the knowledge with the patients he has that needs that knowledge.

    I came home thinking to myself if I wasn't so curious about everything how would we know anything about my husband's condition...and then I thought about all the people in that waiting room who don't have enquiring minds like me and who that doctor is not helping at all and it made me angry. Angry for them and that that just because we are Seniors people think we are idiots! This so called doctor is about to find out what my first heart doctor found out...there may be alot of us who will put up with this kind of crap because we don't think we have a choice...but I'm not one of these people...and as long as I have breath in me those I love won't be treated like this either!
     
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  12. Gloria Mitchell

    Gloria Mitchell Very Well-Known Member
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    Um sounds like he needs 2nd opinion. As for your husband not helping the situation.. I have one just like that. And they wonder why we become nags. Duh....frustrating:(
    My bf has MD and does use drops and sun glasses...some vitamin and suppose to eat lots of broccoli?
     
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  13. Babs Hunt

    Babs Hunt Veteran Member
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    My husband doesn't need a second opinion...but he does need a new Doctor for this eye disease...and we will be getting one.

    Two of my daughters work in the Medical field and they are seeing more and more Doctors, etc. who are just in it for the money and are not really helping their patients. They overbook appointments so patients have to wait forever to see them and then they do nothing to educate or help their patients with their problems. And they are seeing this happen more with older patients especially. It isn't right and we certainly don't have to put up with a Doctor that is not doing his job.
     
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    Last edited: May 26, 2017
  14. Gloria Mitchell

    Gloria Mitchell Very Well-Known Member
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    New doctor brings...second opinion:).
    Our doctor told us 5 yrs ago that the medical field had become such money grubber thst he does not even encourage the younger ones to seek out medical field anymore. Not sure but it appears so many doctors and dentistist have sold out to corporations and this makes problemd for them and us :mad:
     
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  15. Babs Hunt

    Babs Hunt Veteran Member
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    There are still some good Doctors out there who do care and want to help people...but we will have to do our part in finding them now days. To me part of us doing our part is not staying with a Doctor that is not really helping us with our health, only helping themselves to our hard earned money.
     
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  16. Debby McLoud

    Debby McLoud New Member
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    Ten years ago I was diagnosed at the beginning stages of macular degeneration and just yesterday, after reading here, I found an online video that showed how the disease progresses from the point of view of the person who has it. Lucky for me, I don't see things like that illustration showed at all. No hazy area in the centre of my field of vision progressing to darkening to.....

    But after watching the opening ten minutes of the Dr. Wallach video, I'm thinking that I'm doing so well because my diet is my main focus. I only eat vegetables, fruit, grains and nuts. I eat very little wheat products, choose my fats carefully and a few years ago, after a bit of research, started taking lutein and zinc as well as my thryoid med and the other basics (Vit. D, B12 and a couple of calcium tabs every day)

    It sounds like Dr. Wallach's main thing is eliminating the inflammation in our bodies to protect from or heal disease and a year ago, for another reason, my doctor did a complete blood panel and one thing they checked for was inflammation and his words, 'your inflammation levels are so low, it's perfect'. So somehow, I stumbled into doing the right things.

    It's been interesting reading the experiences of others here and enlightening too, to read your frustrations. I hope Babs that you can get your husband on board with a dietary change that will save his eyesight. I can't imagine why anyone wouldn't do everything they could to protect their vision! At the very end, when the body is done, if you can't even watch television or look at a sunset or admire the color of the flowers, what do you have left? Good luck working on him. Maybe the next doctor you get him lined up with will have just the right words to get him to change. Sometimes family is too close but a stranger can influence. Fingers crossed eh?
     
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  17. Babs Hunt

    Babs Hunt Veteran Member
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    Welcome @Debby :) I'm so happy that things are staying stable for you! My husband is having a hard time coming to grips with the reality of his macular degeneration, little by little he is making changes with my help. He does wear the special sunglasses I got for him, he does take the Preservavision 2 eye vitamins I got him, and we are working on eating more of the things that are supposed to help too. When I came back from this appointment with my husband I got online and ordered some bottles of 40 mg of lutein and some fish oil (salmon) vitamins too.
    I am frustrated with his lack of desire to even try to quit smoking (even though he said he would) but he has been smoking since he was 14 or 15 and he just can't even imagine not having those cigarettes. So I'm not going to say anymore about him trying to quit. Instead I will just ask him to do everything else that he can do to try to try to make his macular degeneration stay stable and not progress so fast too.

    His mom had the wet form, while he has the dry form. So he saw what his mom went through and I thought what would make him want to do whatever he had to do to try to stop the progression. He loves being outdoors and working in the yard and with his plants and flowers, etc. so I thought that would help him try everything too. But I think in his mind he just thinks no matter what he does it is inevitable that he will lose most of his sight so it isn't worth trying to give up the things that help relieve his stress about this.

    I definitely feel his Doctor is no help at all and we will be seeing another Retina Specialist...but I have told him that no matter how good the Doctor is, the Doctor can only help him...if he is willing to help himself too. I will do my part in helping him too by seeing that we eat more of the things that are helpful for this eye disease, ordering the vitamins he needs and I have even ordered books about this eye disease and he has read one because it was in large letters with the black and white contrast that made it easier for him to read. He does care about what is happening...I think he just believes that no matter what he would do...he will still end up like his mom.:(
     
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  18. Chrissy Cross

    Chrissy Cross Veteran Member
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    I just looked up steps to slow down macular degeneration and number one was stop smoking....but along with diet it's very important.

    You need to tell him that he can slow it down if he'd quit smoking along with the other things.

    Better to be blind at 90 than in your 60's.
     
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    Last edited: May 29, 2017
  19. Babs Hunt

    Babs Hunt Veteran Member
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    @Chrissy Cross I have told him all these things. And he has read them in the macular degeneration book for himself too. I can share all these things but I can not make him do them Chrissy.
     
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  20. Chrissy Cross

    Chrissy Cross Veteran Member
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    I know that Babs! But if he doesn't at least try to make an effort, I think drs won't take him seriously.

    Has the dr stressed how important and beneficial it would be?

    I know it's very hard to quit...I did it 9 years ago and I still think if I'm diagnosed with a terminal illiness the first thing I'm going to do is have a cigarette.
     
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  21. Chrissy Cross

    Chrissy Cross Veteran Member
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    Also, the best time to try and quit is while he's working....at home, that's all you think about.

    What about the e cigarettes or the vapes? I know they're probably still not good for you but still better than a cigarette.

    I was talking to my ex last week and he said he's doing the vaping...I think that's what they're called and he said it's cheaper than cigarettes too.

    I'm not going to look them up because I might be tempted and I don't want to go there...
     
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  22. Babs Hunt

    Babs Hunt Veteran Member
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    Maybe the new Doctor will try explaining to my husband how important it is that he at least try...but the Doctor we just saw did not even encourage my husband to try by sharing the facts about smoking and macular degeneration. I have encouraged my husband to try to quit...but I am not going to keep "nagging" him about it @Chrissy Cross. He's a grown man who makes his own decisions and will face the consequences of this. I don't want to be his mother and I also don't want to have to spend my time "nagging". You can give people choices...but you can't make them choose them.
     
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  23. Chrissy Cross

    Chrissy Cross Veteran Member
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  24. Yvonne Smith

    Yvonne Smith Very Well-Known Member
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    I totally believe that you have hit upon something that is so very important in preventing a lot of diseases, illness, and pain, @Debby . Inflammation plays a such a large part in creating and sustaining many of the illnesses that we have, and an anti-inflammatory diet is a big help in healing any health issues.
    Inflammation causes swelling and pain, and also affects how our system is supposed to work. It is maybe not going to get rid of all disease; but (like you mention) it will certainly help to slow down the progress of most of them.
    I was close to dying a few years ago, and my heart was in a-fib and heart failure. I had an ablation procedure to stop the fibrillation, and after I got home from the hospital, I started researching which food s are inflammatory, and which are anti-inflammatory, and gradually began modifying my diet, just like you did.
    I still eat some meat (mainly poultry or fish); but I also try to have the majority of my food from fresh fruits and veggies, greens, seeds and nuts. I eat as much of that raw as possible, and only occasionally have bread or other wheat products with gluten. Basically, if God made it, I eat it, and if mankind processed it, then I avoid it.
    I use coconut oil or olive oil, and am careful with fats and dairy.
    While I do still have heart issues, they are actually getting better, and I no longer have heart failure at all. I am scheduled for a touch-up ablation procedure this summer, and then the a-fib should not be a problem, either.
    I sincerely believe that changing my eating habits has been a lot of the reason I have been improving, and even that I am still alive.
     
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  25. Babs Hunt

    Babs Hunt Veteran Member
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    You have shared some really good health and nutrition information with us @Yvonne Smith and I can't speak for everyone but I know for sure alot of this has been really helpful to me and I really appreciate your sharing. :)
     
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