Advanced Macular Degeneration

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

  1. Debby McLoud

    Debby McLoud New Member
    Registered

    Joined:
    May 28, 2017
    Messages:
    9
    Likes Received:
    8
    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?
     
    #16
    Yvonne Smith and Babs Hunt like this.
  2. Babs Hunt

    Babs Hunt Veteran Member
    Registered

    Joined:
    Feb 12, 2016
    Messages:
    7,490
    Likes Received:
    9,648

    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.:(
     
    #17
  3. Chrissy Cross

    Chrissy Cross Veteran Member
    Registered

    Joined:
    Aug 11, 2015
    Messages:
    18,400
    Likes Received:
    17,388
    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.
     
    #18
    Last edited: May 29, 2017
  4. Babs Hunt

    Babs Hunt Veteran Member
    Registered

    Joined:
    Feb 12, 2016
    Messages:
    7,490
    Likes Received:
    9,648
    @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.
     
    #19
    Chrissy Cross likes this.
  5. Chrissy Cross

    Chrissy Cross Veteran Member
    Registered

    Joined:
    Aug 11, 2015
    Messages:
    18,400
    Likes Received:
    17,388
    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.
     
    #20
  6. Chrissy Cross

    Chrissy Cross Veteran Member
    Registered

    Joined:
    Aug 11, 2015
    Messages:
    18,400
    Likes Received:
    17,388
    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...
     
    #21
    Yvonne Smith likes this.
  7. Babs Hunt

    Babs Hunt Veteran Member
    Registered

    Joined:
    Feb 12, 2016
    Messages:
    7,490
    Likes Received:
    9,648
    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.
     
    #22
    Yvonne Smith and Chrissy Cross like this.
  8. Chrissy Cross

    Chrissy Cross Veteran Member
    Registered

    Joined:
    Aug 11, 2015
    Messages:
    18,400
    Likes Received:
    17,388
  9. Yvonne Smith

    Yvonne Smith Greeter
    Moderator Registered

    Joined:
    Jan 21, 2015
    Messages:
    6,229
    Likes Received:
    9,442
    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.
     
    #24
    Last edited: May 29, 2017
    Chrissy Cross and Babs Hunt like this.
  10. Babs Hunt

    Babs Hunt Veteran Member
    Registered

    Joined:
    Feb 12, 2016
    Messages:
    7,490
    Likes Received:
    9,648
    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. :)
     
    #25
    Last edited: May 29, 2017
    Yvonne Smith likes this.
  11. Debby McLoud

    Debby McLoud New Member
    Registered

    Joined:
    May 28, 2017
    Messages:
    9
    Likes Received:
    8
    Well good for you for making the necessary changes! Excellent and wonderful that you stuck with your dietary adjustments. Babs made me think of a guy we knew who had a massive heart attack, and while at first he did do what his doctor ordered, and lost a ton of weight and was feeling good and getting healthier, about a year in, he just gave up. Knowing how bad it would be for him, he still quit exercising, started eating bad again and his health went back down hill. So Babs, your husband isn't alone with not doing what is good for him. Lots of folks know but can't muster the will power to start or keep on with a change.

    Yvonne, one thing I did think of regarding your diet, just be careful of the coconut oil. While it's reported to have some benefits, it's also a saturated fat just like the animal fats. Since I found that out, I've cut way back on my use of coconut oil which I used to use for everything. Now I'll use it for popcorn because I love the flavour with a touch of salt but I don't sautee foods with it anymore and have switched to organic Canola oil because it is a mono-unsaturated oil like olive oil or nuts and so is better for the heart. Here's a link to a great video by Dr. Greger who does an excellent job of explaining why the oils in our diet are so important to heart health. If you go to 19 minutes in, that's where he gets right into the oil explanation and he does a really good job of making it understandable.

    Anyway, again, congrats on your improved health. Isn't it wonderful when you figure out stuff and feel the benefits! I'm just curious if your doctor spent any time on your diet?
     
    #26
    Last edited: Jun 5, 2017
  12. Babs Hunt

    Babs Hunt Veteran Member
    Registered

    Joined:
    Feb 12, 2016
    Messages:
    7,490
    Likes Received:
    9,648
    I will be taking my Honey to his first appointment with his new Retina Specialist on Thursday thanks to our Optometrist. I had taken my husband in to be checked for new prescription glasses and our Optometrist was so startled by the drastic change in his vision in less than a year that she asked what his Retina Specialist was doing to help him. And we told her that he really wasn't doing anything and that we were in the process of switching to another Retina Specialist, Dr. Gauthreaux but we had not heard anything yet since our Primary Physician had referred my husband to him. Our Optometrist called Dr. Gauthreaux's Office, explained her concerns and got my husband an appointment right away. It helps that our Optometrist's mother and some other family members have macular degeneration too and she knows what we are going through and is willing to help in any way she can.
     
    #27
    Yvonne Smith and Chrissy Cross like this.
  13. Gloria Mitchell

    Gloria Mitchell Very Well-Known Member
    Registered

    Joined:
    Mar 18, 2017
    Messages:
    2,287
    Likes Received:
    3,450
    Always seems to be something does it not? At least now maybe get more information and help. Keep us posted !
     
    #28
    Babs Hunt likes this.
  14. Babs Hunt

    Babs Hunt Veteran Member
    Registered

    Joined:
    Feb 12, 2016
    Messages:
    7,490
    Likes Received:
    9,648
    I took my husband to see his new Retina Specialist today and we both are very pleased with him and we now feel like we have another member on our team instead of someone just trying to line his pockets with our copay and whatever our Medicare Advantage plan pays him.

    The new Retina Specialist couldn't really tell us there was anything he could do to change my husband's macular degeneration but he did explain things to us and tell us that there is alot of visual aides, etc. out there now to help retain as much of his vision as possible. We really liked his Assistant too, who talked to my husband about everything she was doing and why...just like the Retina Specialist did. We also spent about an hour and a half in his Office instead of the 3 hours we have spent in the other Specialist's office.

    All in all we made a very good decision in changing to a new Retina Specialist.
     
    #29
    Martin Alonzo likes this.
  15. Babs Hunt

    Babs Hunt Veteran Member
    Registered

    Joined:
    Feb 12, 2016
    Messages:
    7,490
    Likes Received:
    9,648
    One of the reasons I have not been posting alot lately is because I have busy taking my husband to Doctor appointments, to and from work, etc.

    He had an appointment with our Optometrist before we went to see the new Retina Specialist and his eyesight had deteriorated in less that a year from 20/30 in one eye and 20/40 in the other to 20/80 and 20/200. :(

    Sitting in the room with him and watching while he did the eye tests made me so sad...he could basically read only the biggest letter on the eye chart. I think even the Optometrist was surprised at how much his vision had gone down. We are blessed those that our Optometrist's mother has Macular Degeneration and I think some others in her family too...knowing so much about this disease because her Mom is going through it, makes our Optometrist really want to help my husband in every way she can. She wanted us to see the new Retina Specialist before filling his new prescription so we did. We then stopped by our Optometrist's Office to see what she thought was the best thing to do but the Receptionist told us the Retina Specialist had not faxed over his thoughts on my husband's case yet... and then we did not hear anything for over 3 weeks. One day my husband said that he thought the reason why the Optometrist didn't get back in touch with us was because she didn't really feel getting a new prescription would help my husband. When he told me that I was totally surprised and told him our Doctor would never just leave us hanging there...she would call and be honest with us even if it meant saying she didn't think a new prescription would help.

    I decided to send a email to our Optometrist and ask her why she hadn't gotten back in touch with us. Not even an hour later her Office Receptionist called and told us that our Doctor had never gotten our message from the one we talked to at her Office and that as soon as our Doctor finished up with the patient she was seeing she would call us. When she called a few minutes later the first thing she did was apologize and tell me that the lady we gave the message too was no longer working for her because evidently she wasn't passing on any messages to our eye Doctor. And she asked us if we could come in anytime soon....so we set up an appointment for a few days later. While she was on the phone though I asked her if she thought buying the new prescription would help my husband and she was honest and said she didn't know....but that this is why she wanted us to come in...so she could run more tests (at no cost to us) and see how much improvement she could bring to my husband's sight with a new prescription. Once she fitted him with the test lens that gave him the most improvement he could tell her whether he thought there was enough improvement to order the new prescription.

    The good news was she was able with her equipment to get his vision to 20/50 in his good eye and 20/100 in the other. The additional testing cost us nothing and my husband did feel it made a difference in his sight so we went ahead and ordered the new prescription and with our vision allowance for new glasses we only had to pay $33 out of our pocket for his new glasses. He got them on his Birthday (Sept. 19th) and they do make a difference to him. Our Optometrist will see him again in six months and will run additional tests that she said she will not charge us extra for since our vision allowance on our Health plan only covers basic vision tests. We feel God has blessed us with an eye Doctor that has compassion and wants to help my husband keep as much of his vision as possible because she is going through this with her own Mom and some family members and knows what my husband is going through.

    Now we just have one more big change to make and it is my husband who had made the decision to do this. Next Wednesday I will take him to the Driver's License place and he will surrender his Driver's License and I will become our one and only driver after that.
     
    #30
    Last edited: Sep 24, 2017

Share This Page