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Medical Forum / General / Vision / September 2005Help....My Grandmother is going Blind.
Hello, I have a problem. My 96-year-old grandmother has been diagnosed with "Macular Degeneration." Her right eye has become shadowed and blurry. Her left eye is okay; it appears healty. The doctor who treated her suggests injections of "Macugen" every six weeks for the rest of her life. But, what do I do? I am left with making the decision of whether she goes for shots in the eye or not. If it were I, it would be a difficult decision, and I'm only 43. So, this "Macugen" has only been administered since February of this year...... The doctor is really pushing this, but that is nothing new to me.....I watched my grandfather, while he was dying from cancer, go through test after test, for thousands of dollars, as he waited to pass away. Doctors can be ruthless. The web site for this treatment of "Macugen" is vauge. I don't see any accountable information. The percentages of occuarance is obscured by words like: could, many and some. The clearest information is that this disease cannot be reversed or stopped, only slowed. But, when you are 96, do you sign up for this program of "injectons in the eye?" And, every six weeks with a follow-up a week after each treatment. This seems like it would be very uncomfortable for grandma; who just wants to enjoy her last few years in peace. Oh, by the way, my grandmother is very sharp. She still has her mental capacity. But, what is the life expectancy of a 96-year-old? Is it long enough to enroll her in a routine of ongoing eye injections, in an attept to slow the degenerations of her one bad eye? I am so stressed to play a key role in her decision. Any advice or point-of-view would be very nice. Thank you in advance, MUSIC LOVER.............. >Hello, I am left with making the decision > Oh, by the way, my grandmother is very sharp. She still has her >mental capacity. The obvious question here is, if Granny is still running on a full deck why are YOU making a medical decision on her behalf? +++++++++++++ Reply to the list as I do not publish an email address to USENET. This practice has cut my spam by more than 95%. Of course, I did have to abandon a perfectly good email account... I agree with Wooly. Let Granny makes the decision. I know someone (haven't see her for a long time) who has that diseaese and became officially blind a few years ago (she is 44 now). She inherited that disease. She lives in a s mall town in midwest. Last I talked to her (a year ago) I didn't hear her using any shots. This treatment is experimental, and had only moderate success when it went through the FDA approval process. I believe that it is more sizzle than steak. So, as an optometrist for 25 years, with a father who is 85 and has macular degeneration in one eye, would I sign up my Dad for Macugen therapy? No way. Thank you for responding to my post. This is causing our family lots of confusion about what to do. Unlike the other answers I have received fron my initail post, you seem to understand that a 96-year-old woman, although sharp for her age, needs direction from her family members. She has been to three specialists and they all want to give the shot in the eye. To me, this is not surprising because these doctors have an obvious cash incentive. Thank you again for your point of view. (No pun intended) What do you think about not treating with Macugen right away, but having the eyes retested after three months or so to check if there has been any major deterioration? Sincerely, ML >96-year-old woman, although sharp for her age, needs direction from her >family members. Lordy, if I happen to "need direction" (assuming I live past 70) when I get old please PLEASE just give me a massive stroke some fine morning while I'm enjoying my espresso... My mother-in-law is 81 this year. She's the most opinionated old lady I know and I hope to grow up to be just like her. She certainly doesn't "need direction" and wouldn't appreciate any if we tried to force it on her. Oi! +++++++++++++ Reply to the list as I do not publish an email address to USENET. This practice has cut my spam by more than 95%. Of course, I did have to abandon a perfectly good email account... Hell, when my grandmother was only 81 she was running marathons. Ninty-six is much different than 81... When I say she's sharp, I mean she's sharper than most persons in her age group. She passed her drivers test at 95. But for her to get behind the wheel of a car would be extremely dangerous. Sure, she wants to drive still, but for me not to talk her out of driving, would be irresponsible on my part, in my opinion. The safety of other drivers and pedestrians would be at a serious risk, not to mention herself. The most truthful thing you and I can say is: we don't know what it is like to be 96. She lied about her age until about 85. Then she became proud of it. Things change. I think this whole Macular Degeneration treatment is confusing her very much. If I say, "grandma, if you don't get the shots in your eye every six weeks, you will be blind in three months, she would probably start treatment. The problem is the facts in this very new treatment are vague at best. To give her accurate facts is impossible at this time. What a drag it is getting old.... Music Lover What is her level of vision now and what was it a year ago? This would give you some yardstick regarding the progression. If you want some more information, try this link: http://www.mdsupport.org/library/macugen.html There is nothing like blindness to take the fun out of life, especially for a very active and independent 96 year/old. DrG >Hell, when my grandmother was only 81 she was running marathons. >Ninty-six is much different than 81... When I say she's sharp, I mean >she's sharper than most persons in her age group. The problem is the facts >in this very new treatment are vague at best. To give her accurate >facts is impossible at this time. I'll still maintain that if the old bird is in charge of her faculties it isn't your business to "guide" her decision in this matter, or in any medical-related matter. Its your job to provide her with facts - unfiltered and unbiased - and to then support her decision even if you don't agree with it. If she's given you a medical power of attorney then you're dealing with a different kettle of worms... But by all means, persuade her to give up driving if she's no longer safe behind the wheel. Unlike medical decisions that only affect her directly, granny operating a vehicle could pose a real public safety risk if her vision is failing. +++++++++++++ Reply to the list as I do not publish an email address to USENET. This practice has cut my spam by more than 95%. Of course, I did have to abandon a perfectly good email account... > >96-year-old woman, although sharp for her age, needs direction from her > >family members. [quoted text clipped - 7 lines] > doesn't "need direction" and wouldn't appreciate any if we tried to > force it on her. It's probably not a matter of direction, but of knowledge. If we want to find out about things we google, we use usenet, we email people. This is certainly not beyond a 96-year-old, but unless somebody previously forced her to get a computer and use it she probably doesn't do those things. What DO non-computer people do? You can't make a decision without facts to base it on, and facts aren't always easy to come by. Has everyone here done his or her best to drag elderly friends and relatives into the computer age? It's amazing what playing solitaire (a really nice bridge between reality and the computer) can do in reducing the fear and imparting mouse skills. Then comes other card games. Then email. Then web-surfing. So far I haven't been able to interest anybody in usenet, even people younger than me. Still, it's worth a shot.  SignatureCheers, Bev ===================================== "Incontinence hotline, can you hold?" By definition, once it is FDA approved, it is no longer rated as "experimental". Whether it is successful is a separate story. Macugen appears to be better treatment than PDT, and the the only ray of hope for some people when it is their only eye and has wet ARMD. On 9/8/05 12:18 PM, in article 1126207089.326808.226830@g43g2000cwa.googlegroups.com, > This treatment is experimental, and had only moderate success when it > went through the FDA approval process. I believe that it is more [quoted text clipped - 3 lines] > > No way. > So, this "Macugen" has only been administered since February of > this year...... The doctor is really pushing this, but that is nothing > new to me.....I watched my grandfather, while he was dying from cancer, > go through test after test, for thousands of dollars, as he waited to > pass away. Doctors can be ruthless. I hear you. I had power-of-attorney for my elderly parents when my mother was diagnosed with pancreatic cancer. There is no cure, only palliative treatments, and some of the diagnostic tests were painfully invasive. However, they are working on Macugen in eyedrop form as well as a sustained release capsule. DrG > However, they are working on Macugen in eyedrop form as well as a > sustained release capsule. Where have you heard of this research? Don W > I have a problem. My 96-year-old grandmother has been diagnosed > with "Macular Degeneration." Her right eye has become shadowed and > blurry. Her left eye is okay; it appears healty. The doctor who > treated her suggests injections of "Macugen" every six weeks for the > rest of her life. > I am so stressed to play a key role in her decision. Any advice or > point-of-view would be very nice. This is a difficult decision, and has several angles: 1. Many people do fine with vision in one eye. Especially if the vision in the bad eye is poor, she will not be using that vision very much anyway. 2. A principal advantage of having vision in two eyes is depth perception. If she mostly reads and looks at the scenery, and has given up active things like sports, depth perception may (or may not) be less important to her. 3. Even if the vision in the bad eye is poor, if she had a terrible accident and completely lost the vision in the good eye, the remaining poor vision is infinitely better than no vision at all. The bad eye can be viewed as a "spare". Is she willing to give up her "spare"? At 96, facing a whole lot of discomfort, the answer might well be "yes". 4. A whole lot of this has to do with lifestyle and personal preference. See if you can help her to decide what seems best for her. If you spend a lot of time with her, you yourself will have a pretty good idea about her lifestyle and preferences. 5. This sounds horrible, but perhaps she could trying wearing a patch a few times for a few hours on the bad eye. This might help her decide how much the vision in the bad eye is worth to her. A black patch can be purchased at any drugstore for a couple of bucks. I've been going through a similar decision for myself lately. The vision in my right eye just isn't that good. It almost doesn't seem worth the hassle to correct it, so I haven't been. I went to see my OD last week for some help in deciding what to do. He said it was my decision, and that if it didn't seem to help my vision to wear correction, then I shouldn't do it. I'm still thinking about it, although I haven't been wearing correction lately. My circumstances are different, in that I am 55 and fairly active (no sports but lots of walking). Dan, I think your analysis might have a weakness, which is that macular degeration is the leading cause of bilateral blindness, not unilateral blindness. DrG > Dan, I think your analysis might have a weakness, which is that macular > degeration is the leading cause of bilateral blindness, not unilateral > blindness. That's very important information, which I wasn't aware of. I don't have macular degeneration, and although I have friends whose parents are suffering from this, I don't know the parents. The original post mentions several times that this just affects one eye, and that the treatment is only for one eye. Obviously, the OP should carefully verify with the grandmother and the doctor as to whether this is actually a problem for both eyes, and whether the treatment is expected to involve both eyes. If so, please disregard my advice, as it does not apply in this case. As I mentioned, I am currently mostly using just one eye, and my wife has severe amblyopia and has no option of even seeing out of both eyes. ObGoodNewsAboutMyGoodEye: I could read most of the letters on the 20/15 line uncorrected with my left eye at my last vision screening. I don't have to go back to see the OMG until December, and I am off the Pred Forte drops. I'm back to life as usual, as far as my vision goes. ObVisionWeirdness: My daughter, age 19, just got reading glasses. She has never worn glasses before, but is now spending a lot of time at the computer, and her eyes are feeling the strain. Dan - you might have mentioned this in an earlier post - but what caused the deterioration of vision in your 'bad' eye? I'm asking because I remember you had bilateral cataract surgeries, and am wondering if it is somehow the result of that surgery. My concern comes from the fact that I will be having my second cataract surgery early next year. Thanks - Karen > Dan - you might have mentioned this in an earlier post - but what > caused the deterioration of vision in your 'bad' eye? I'm asking > because I remember you had bilateral cataract surgeries, and am > wondering if it is somehow the result of that surgery. My concern > comes from the fact that I will be having my second cataract surgery > early next year. Thanks - Karen The cataract surgeries were not the problem. They both went great. However, I had a retinal detachment in the right eye, and because I didn't get treatment for it promptly, I have suffered a slight permanent vision loss in that eye. I was out camping in the middle of nowhere, and not in my home state, but I still should have gone in promptly. I had a retinal detachment in the other eye about a month ago, and you can bet that I went in right away. My vision in that eye is almost completely back to what it was before. As a layperson, I would not recommend delaying or cancelling your second cataract surgery due to fears of complications. If it is causing problems with your vision, and you have no special risk factors, then I feel that it is worth the slight risk for the enormous improvement in vision that you will get. |
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