Vitamin D May Cut Macular Degeneration Risk

“High vitamin D foods were found linked to lower age-related macular degeneration (AMD) risk.”

Hat tip to Glenn Reynolds.

More Christmas Gift Ideas for the Vision-Impaired

Three Christmases ago I made a list of gifts for people with poor vision. The other day someone posted in comments asking for more ideas, so here are some thoughts on what we’ve found helpful.

2007-02-01-Home-Stuff-0003.jpgLiving Solutions oversized TV remote controls are extremely helpful. Walgreen’s sells them around Christmas and Mother’s Day. The remote itself is so big it’s hard to lose, and the big buttons are easy to see.

My mom’s vision is so far gone due to macular degeneration she can’t even read the oversized numbers, but she likes hers for another reason. Mom locates buttons on the remote by memorizing their location – she starts in one corner of the remote and counts down and over so many buttons. Her TV’s original remote (shown in the picture) has small buttons of differing sizes arranged in an artistic fashion that she found difficult to navigate. The buttons on the Living Solutions remote are large, consistent in size, and are laid out in a checkerboard grid of rows and columns that she finds easy to follow.

Here’s an inexpensive and useful gift – stick-on, raised dots. Mom can’t read the dials on appliances, so we mark them for her with raised dots. We’ve placed dots on the timer dial of her microwave for the five minute mark, and on her oven dials for the medium heat setting. The washing machine has dots for the water level, temperature, and duration settings she uses. Melissa puts one, two, or three dots on the caps of mom’s prescription bottles so she’ll know how many times to take the medicine each day. You can see an orange dot on the smaller remote control in the picture.

You can find stick-on dots in the hardware section of your department store. They’re sold alongside the felt pads you put inside kitchen cabinet doors and the sliders that go under furniture legs.

Melissa has started buying mom books on tape (or actually CD) and mom’s enjoyed those.

The talking watch from a few years ago was a big hit and is almost indispensable. The first one quit working so mom now has another one. If you know someone with poor vision a talking watch is a surefire hit.

Mom’s Seeing Colors Again

Yesterday, just three days after her Lucentis treatment, mom was seeing colors again. She could also see her feet, which barely registered as shadows before the treatment. Lucentis is amazing stuff.

Update on Mom

Mom’s home and feeling good. The first time she went in for Lucentis the injection was very painful. This time she asked them to make sure they numbed her eye completely, and everything went fine. My brother stayed with her last night and will be staying with her for a few days until she recovers more of her sight.

Mom’s Going in for Another Lucentis Treatment

Mom’s going in for another Lucentis injection Monday, because her eye is hemorrhaging again. She’s been dreading it all week. I imagine getting an injection in your eye isn’t pleasant. Too, the last time she had a Lucentis treatment she had another stroke. She’s so nervous her voice has been cracking as she talks all week.

Life hasn’t exactly been fair to my mother. Her mother died when she was nine or so. She was the youngest of a bunch of kids, all born in the hills in a house without electricity. Her father worked for TVA and was gone a lot, and he decided he couldn’t keep her, so he put her up for adoption. She was adopted by a cruel woman who never loved her.

When she met my dad she was only too happy to get married and get away from her mother. World War II ended just as they were getting married. Dad got drafted into the Marines during the Korean War and she made do while he was overseas by waiting tables near Parris Island, South Carolina. After that dad used the GI Bill to go to heating and air conditioning school and they moved back to Maryville, Tennessee, where she worked for a time as a legal secretary in downtown Knoxville and downtown Maryville.

Dad’s relatives lived around Dalton, Georgia. Almost to a one they had gotten into the burgeoning carpet business. His uncle Elbert took the chickens out of his chicken coop and replaced them with rolls of carpet to sell to people passing along I-75. Mom started selling carpet part time to make a little extra money, and dad installed it on the weekends.

(My dad didn’t have the easiest life, either. Born illegitimate back in the days when that meant something, he never knew his father. His mother left Georgia and left him to be raised by a mentally-retarded relative for a time.)

Eventually the part time carpet business took off and dad quit heat and air. They rented a shop on Broadway in Maryville and lived in a little apartment in the back. One day my brother played with matches and set the place on fire. Then they moved the store down the street to its current location. (It’s Dorolee’s Carpet House (short for Dorothy and Leon, in the style of Desilu Studios), at 1900 East Broadway. She sold it when she retired half a dozen years ago.)

Mom worked selling carpet almost forty years six days a week, through four kids, a divorce, and a land swindle in Etowah that cost her much of her savings. Later, she lost more of her savings trying to rescue my sister from her drug addiction. Mom has seen two of her children die before her. One son to a crib death, and one daughter to a drug-related death last year.

My brother and sister both married and divorced without having kids. I finally had my first child at age at nearly age 36. By then macular degeneration had set in for my mother, and she could barely see her first grandchild. Her vision was worse by the time we had our second child. Last night she told me if she could have one wish before she died it would be be to see her grandchildren for just five minutes. That’s got me choked up right now.

So now her one good eye is hemorrhaging again and she’s lost almost all of her sight. Now that there’s leakage behind her eye she qualifies for another Lucentis injection. I didn’t realize it before, but the macular degeneration had taken away all of her color vision. After the last injections her eyesight improved to the point that she could see the orange in a box of cereal, red in a person’s shirt, and a patch of yellow on TV. Once the leakage stops a patient can’t get any more injections, and her color vision soon disappeared. I suspect that in the future the FDA will approve additional injections past that point, but for now that’s the best we can do.

Judge Orders Treasury Dept to Make Blind-friendly Money

From Breitbart:

The government discriminates against blind people by printing money that all looks and feels the same, a federal judge said Tuesday in a ruling that could change the face of American currency.

U.S. District Judge James Robertson ordered the Treasury Department to come up with ways for the blind to tell bills apart. He said he wouldn’t tell officials how to fix the problem, but he ordered them to begin working on it.

The American Council of the Blind has proposed several options, including printing bills of differing sizes, adding embossed dots or foil to the paper or using raised ink.

I’m all for it. My mom isn’t completely blind, and it’s hard for her to tell the current bills apart.

It seems like the sort of problem that wouldn’t be that hard to fix. We’re already including special threads and strips and inks into money to foil counterfeiting. If we can do that it seems like we can do something for people who can’t see well or at all during the next counterfeit-countering redesign.

Mom Had the Lucentis Treatment Yesterday

Yesterday afternoon mom went to the doctor for the Lucentis treatment for her macular degeneration. They cleaned around her eye, which was apparently not pleasant, and gave her the injection. She’s feeling a little rough tonight, but she’s willing to put up with anything to save her sight. My brother stayed with her, and Melissa made everyone dinner.

It takes some time for the treatment to take effect. We should have some idea within the next two weeks if it’s working.

UPDATE: Mom felt much better the next morning and wasn’t experiencing any pain. I couldn’t see her eye the first day because she was wearing a cover over it to protect it. I saw it the next day and the white part of her eye is dark red with blood. That’s apparently normal, so don’t be surprised to see that in a friend or relative’s eye.

Update on Mom’s Vision

Mom’s eyes took a turn for the worse this past week. She called her doctor, hoping she could get the new treatment, Lucentis. The nurse she spoke to wasn’t encouraging. Lucentis is only prescribed for wet macular degeneration, which mom has, but if the last surgery stopped the leaking she wouldn’t be eligible for the new treatment.

Mom was upset all weekend, worrying she wouldn’t get Lucentis. She saw her doctor today and he found bleeding behind the eye, which means she is probably a candidate for the new drug. He has to consult with the other physicians in his practice. Mom is seeing him today to find out their decision. We’ve got our fingers crossed.

UPDATE: Mom was approved! She’s going to the doctor Wednesday the 26th for the treatment.

New Hope for Age-related Wet Macular Degeneration

I’ve mentioned before that my mother is losing her eyesight to macular degeneration. She’s blind in one eye and has roughly 20% of her vision in the other. Now the FDA has approved a new drug, Lucentis, to treat precisely the kind of macular degeneration she suffers.

AMD is a significant cause of blindness for people over 55. People with untreated wet AMD eventually become severely disabled. 10% of all AMD is wet-AMD. However, 80% of AMD associated vision loss is due to wet-AMD. With wet AMD the area of the eye responsible for central vision becomes damaged as a result of the growth of abnormal leaky blood vessels. Lucentis blocks the growth of these leaky blood vessels.

Lucentis is given by ocular administration – injection into the eye. Clinical trials showed that almost 95% of patients with wet AMD suffered no vision loss for 12 months with Lucentis treamtment. This compared to 60% of patients who were on a placebo. 30% of the Lucentis-treated patients actually experienced improved vision after 12 months.

A smaller trial showed Lucentis protected wet AMD patients’ vision for 24 months.

One catch is the price:

The cost per dose is expected to be high – perhaps in the $1,500 to $2,000 range. Genentech has discussed reimbursements with Medicare, which is expected to pay a discounted rate for treatments once Lucentis is approved.

That’s steep, but considering that one dose is effective for a year or two, that’s not an unreasonable price tag. My mother has said she’d give anything to be able to see her grandchildren’s faces clearly. Put it that way, and two thousand dollars seems like a bargain. Retaining the vision she has also means she can hang onto her existing independence rather than going into a nursing home, which is a cost in money but a much greater cost in quality of life. We had hoped for a miracle. Now there is a miracle. It seems ungrateful to carp about the bill.

Too, the alternative treatment mom’s been undergoing for wet AMD has been repeated rounds of laser eye surgery to anneal the leaking blood vessels. That process is expensive, has to be repeated periodically, and leaves her with substantially worse vision during the one-to-two week healing process. She had to undergo laser eye surgery just before our wedding, and was essentially blind at the ceremony.

For people who can’t afford to pay for Lucentis, I’d expect family members, friends, churches, and community groups to rise to the challenge.

Three Generations Under One Roof – Mom Moves in With Us

Mom-House-05-09-18-00021.jpg

After 47 years in the same house in Maryville, my mom finally moved. She had always said that if she got to the point she didn’t enjoy living by herself or couldn’t take care of a house she’d move. Mom has macular degeneration, and has had a few light strokes. She’s blind in one eye, and has reduced vision in the other. She needs help reviewing her bills and doing some small things, but she can still cook and clean for herself.

Melissa and I had told her years ago she was welcome to move in with us, and that’s what she did. Our house has an attached apartment. I had been renting it out since I bought the place, and now mom rents it. She remodeled it to suit her, and she’s incredibly happy. It’s just the right size for her to take care of, she’s next door to us, but she has her privacy, and Melissa and I do, too.

We’ve got three generations of Joneses in the same house now. Katie loves it. She gets to spend time every day with grandma now. On the days Melissa has school I’ve been going over to mom’s for breakfast and coffee, which is nice. Mom can keep Katie for a few hours at a time, which gives Melissa and I time to get things done around the house without a baby under our feet. Even the cats like it. Our cat Milo goes over there every day for a treat and to visit for a few hours. Gracie the cat is getting curious now, and is warming up to the idea of going next door.

Mom’s overjoyed. She gets to see us and especially Katie every day now, and she got to leave behind some problems that were getting to be overwhelming at her age. She told me this morning that she could remember dreaming last night, which is something she hadn’t done in the last few years.

Gifts for the Vision-impaired

I’ve mentioned before that my mother has macular degeneration. For Christmas we bought her a few items from the Independent Living Web site to make routine things a little easier for her. Here’s a list of some things we bought, along with a few things she has and likes.

The writing guides are simple, but handy. When mom fills out checks she has trouble seeing where to fill in the date, amount, etc. The check guides slip over a standard-sized checkbook. They have cutouts for the check fields and signature area.

Disclaimer: I don’t have any financial interest in Independent Living. Just passing on information for anyone else who has vision-impaired friends or relatives.

Macular Degeneration

I took my mom to a new doctor today to see if he could do anything for her vision. She’s 77 and is legally blind due to age-related macular degeneration and cataracts. The cataracts would be easy to treat, except that you’re apparently not supposed to have cataract surgery while you have macular degeneration. (There’s at least one study saying that cataract surgery is OK, but that study reviewed cases of mild MD.)

One eye is almost completely blind, even after surgery. She’s had several surgeries in the other eye, but the doctor now thinks he can’t do anything else for her. She’s also taken Lutein, which is supposed to help. There’s a “wet” and “dry” version of MD. She has the wet type. The surgeries were mostly laser surgeries to seal off blood vessels.

The new doctor’s specialty is helping patients deal with low vision. After some extensive testing and interviews, mom tried a few things to help her see. The simplest is a couple of lighted magnifying lenses, one big for the house, and another small for her purse so she can read restaurant menus. They use excellent German optics and are much better than the dimestore style. As my brother put it, you can see a serial number on a pubic hair.

Another option is the “Jordi.” It’s a video camera and close-proximity viewing screen, with a belt-mounted battery pack with zoom controls up to 10x. It’s head-mounted, much like a headlamp used for caving. Using the Jordi, she can see clearly at a distance. It’s too awkward for everyday use, but would be useful for watching movies in the theater or taking in the scenery outdoors.

The video unit can be mounted on a scanner device with a movable stage (like a microfiche reader) for viewing documents and writing checks. The video signal is output to a television or computer monitor.

Another nice thing about the Jordi is that it accepts feeds from other video devices, like DVDs and VCRs, so she can watch TV, which is difficult now. We’re moving her TVs around this week, so she can watch the biggest TV in the den instead of the living room. Total cost for the Jordi is $3,000 for the setup, including a video monitor. She’s thinking about it.

Mom is actually doing really well through all of this. It’s been scary for her, but she has a good sense of humor about it.

She’s also pretty smart. During the interview, she was asked how she handles money when she has trouble seeomg the numbers. It turns out she puts different denominations in different slots in her billfold. If she’s at a store where she doesn’t know the cashier, she’ll say out loud – with enough volume that other customers can hear – “Was that a 20 dollar bill I gave you?” She’s also learned the number of steps between rooms for those times after surgery when her vision is especially bad.

I’m posting this as a “what’s going on” post, but also to inform, and to get more info from anyone who has experience with macular degenaration in their family.