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Mascular Degeneration

Zac495

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Can't win...
Mom has this - it's the dry kind.
She just said there's no cure and it will get worse. Does anyone have experience with this? Thoughts? THANKS.
 

Tacoma

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Get her in to see a specialist as quickly as possible. My Mom has had mascular degeneration twice I believe once was the dry kind and once was the wet kind. There is a needle that goes into the eye which can stop or slow down the progress. Although we are Canadians the first time she needed the needles she had to pay around $600 per time and she had 3-4 of them. By the time she got it in the other eye the needles were covered by health care. Catching it before she loses most of her sight is crucial. Nothing can repair the damage already done but medicine has come a long way. Good luck.

Joan
 

Sandi Bo

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My father's significant other had just the beginnings of it a long time ago (est. 10 years or so). Somehow she was able to reverse the minor effects she had, and she does not have it now. I know the prognosis is not good, and you hear it only get's worse, but there was good news for my dad's significant other. I will find out for sure what she did (I'll be seeing her Wednesday night, so it will be a few days before I post).

Hang in there. You're having some tough times!
 

Eli Mairs

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If it's any consolation, the dry macular degeneration is less serious than the wet.

Tell her to take lots of lutein - at least 10 mg/day - found in eye vitamin supplements such as Vitalux.
 

vacationhopeful

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My 86 yo aunt gets the needle in the eye every 5 weeks. She goes into Wills Eye Hospital over by Jefferson Hospital in Phila. I believe they are now part of Jeff. Takes less than 30 minutes once she gets there on the public bus. She still drives (but not at night), walks 1-14 city blocks every day (except in icy/snowy weather), etc. Downtown Philly is a hassle to park; bus drops you off at the cornor. Been getting the shot for 3-4 years now.

Agree with everyone else --- don't wait, the damage happens very quickly!
 

mtngal

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My Mom has the wet kind in one eye, the dry kind in the other. The wet kind comes on quickly and you can lose your sight in the eye. If its caught when it first happens the damage can be limited/corrected (?). My Mom didn't realize what was going on and didn't go see anyone for a couple of days - it was way too late by then.

She tried the shots in her dry eye but it didn't seem to help all that much. She's had it for 10 years, had to give up driving about 5 or 6 years ago and now has little straight ahead sight in the dry eye. So for her, it did get progressively worse.

There's a very limited test going on that is using some sort of stem cells to try to correct the dry type. It's too early for the researchers to have any results, but it sounds promising for the future.
 

Zac495

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My father's significant other had just the beginnings of it a long time ago (est. 10 years or so). Somehow she was able to reverse the minor effects she had, and she does not have it now. I know the prognosis is not good, and you hear it only get's worse, but there was good news for my dad's significant other. I will find out for sure what she did (I'll be seeing her Wednesday night, so it will be a few days before I post).

Hang in there. You're having some tough times!

Thanks all - I will wait to hear what you have to say too.
Jeff is better than Mayo (the two philly clinics?)
 

"Roger"

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I am sorry to hear about your mom. I am surprised that more Tuggers have not responded in that (I believe) macular degeneration is the leading cause of blindness. It is fairly common in the older population. My mother had it and knew many others that did also.

A small bit of good news is that she will not go completely blind. What she will lose is any ability to finely discriminate what she sees in front of her. That means she will not be able to distinguish faces, read, etc. She will know that there is a large object in front of her (a chair) that she needs to navigate around, etc.

Those who have responded that their parents have improved (via shots in the eye, etc.) are talking about the wet kind. There is no known cure for the dry kind. While one should always hold out hope for a miricle breakthrough, it is probably also important to be realistic and accept the fact that the disease will run its course. (My opinion.)

Two things that might help your mother in dealing with the disease. The first one is fairly expensive. They make special magnifier readers for people with macular degeneration. They are basically a table area on which you put an object with something akin to a computer screen above the table that shows a magnified image of what was placed on the table. While it did not allow my mother to read books or anything like that, for quite a while she could use the screen to read bills, make out checks, get a better idea of what was in a family photo, etc. This allowed her to keep more of a sense of independence for a longer period of time. (Eventually, her vision was bad enough that the magnifier became less and less useful.)

Secondly, if your mother at all likes to read, the federal government has a special program with books (and a few magazines) on tape. At no cost, you are sent a special tape playing machine. (The machines look like something from fifty years ago - clumsy looking yellow plastic machines.) Once you have the machine, you can order a wide variety of books on tape. The tapes can only be played on this special machine. They are constantly updating their library with a catalogue of new listings sent out either monthly or bimonthly. (At first, she will probably be able to read the catalogue with the magnifier, but eventually she will need someone's help.)

None of this is wonderful news, but, believe me, neither your mother nor you (as an offspring who needs to help an elderly parent) are alone.

Best wishes.

PS: There is some thought that Lutein and anti-oxidents might slow the pace that the degeneration takes, but the evidence is very thin. Still, there is no harm in taking these. Lutein is now added to most if not all the multi-vitamins for seniors. To be honest, with my family history, the slim possibility that these ingredients might help is the only reason that I take a multi-vitamin. I figure, what the heck, what do I have to lose.
 

Pat H

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There is no cure for either kind. The shots can slow/stop bleeding in wet macular but it often reoccurs in another area. My mom has this. It comes on suddenly. It can be slowed if gotten to a Dr. right away but the damage is already done. Dry macular can be seen in regular eye exams and comes on slowly. People with wet macular can become blind whereas the dry kind does not affect peripheral vision. Dry macular is also hereditary.
 
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Jaybee

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My DH & I both have the beginning of the dry Macular Degeneration. The Opthamologist just recommended that we take Lutein & Mega Red (Fish Oil).
 

mbeach89

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In addition to nutrition supplements such as I-Caps, or Ocuvite, it is also important that if the patient is a smoker, they are at a much higher risk of losing their central vision from macular degeneration. If he/she is a smoker, they must stop immediately!

The patient should also be given what is called an Amsler Grid to look at every day (monocularly) so they can self monitor for any rapid onset macular changes. *With both eyes open, the person may not notice a change in one eye as the good eye will compensate.

Of course, regular eye health evaluations are key. Even if you "think" you have no problems, if it has been over a year since your last eye examination, make an appointment and insist on either pupil dilation or a retinal scan. A non-dilated eye health examination IS NOT adequate!

*Note: Many times a retinal scan such as Optomap, or certain retinal cameras can get a very good view of the retina without dilating drops...the pupil will need to be at least 3mm in diameter to get a good image.
 

Sandi Bo

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Macular Hole

Hi Ellen -

Reporting back, sorry it took so long. I spoke to my Dad's SO. She did not have macular degeneration, she had a macular hole. And strangely they do not know why it healed. She went to a retinal specialist and he said they couldn't do anything (but pray).

So, I don't know that it is relevant at all, but things she did do:
* As soon as she suspected trouble, rested her eyes (no more driving, etc until she saw the specialist)
* She continues to take, twice a week Lutein and Beta Carotene (vitamin A) cautioning that if you take too much they can cause liver damage

This happened years ago and amazingly, it has not recurred. She does notice some blurriest in the eye, but nothing like the original issue.

You gotten some very good, and more relative, advice here. Good luck and keep us posted.

Sandi
 
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