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 Veteran 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 Veteran 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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