No Surrender

by Jack
(Ottawa, Canada)

Diagnosed 3 years ago with the dry form of macular degeneration. Vison has changed somewhat since then. First in the left eye, then more recently in the right. Things are a little foggy, and reading is a bit harder as all the words are crooked but that's the worst of it so far.


I know what's coming down the road and while scary, the thing that bothers me most is the idea of having to rely on someone else. Losing my independence is probably my worst fear.

I also have severe hearing loss. Ten years ago they estimated I had the hearing of a 75 year old, I am 56.

Now the thing with hearing loss is that it shrinks your world. People get tired of repeating themselves and eventually you find yourself moved to the sidelines of conversations and the world closes in a bit. I often wonder how much more my world will be reduced as my AMD progresses.

I used to build homes for a living and as I retire in a few years, I hope to build myself a cottage where I intend to spend the rest of my days looking out over the lake.

Friends & family will sometimes gently remind me that once I loose my sight, I won't be able to drive, shop for food, cut firewood, find my way around, etc. and that living alone at the cottage just wont be possible.

I once had a teacher who told me the only limits we have are those we set for ourselves.

Best damned advice I've ever gotten.
See you all up the lake.

j.




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Aug 19, 2013
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Mother has All the Tools to Help
by: Sisterhood

Thank you Leslie for your reply. We have been to many support groups for AMD and have seen many help aids to help my mother with day to day living. She has many of the aids and I am very aware of Maxi Aids catalog. I have done my homework to help her and always kid her that I'm working on my PhD in the field. She does all right for the most part, and is technically challenged for some of the tools, but she is in much denial and is constantly looking for a cure. She wanted me to take her to a neighboring state to see a 'doctor' who says he has a cure for MD. Of course I had to remind her that whatever this doctor is claiming is only to suck more money from her because if there was a cure, it would be all over the news.

We see the retina specialist in September and I am biding my time until then so I can ask him what supplements would benefit her at this stage of MD or GA. I hope if she hears it from the doctor, she will quit ordering everything that sounds like it may cure her. I just worry what she may be putting in her body. She suffers from a-fib and I often think that these questionable supplements make her a-fib act up. We are going to bring the supplements in to the visit to show the doctor. At least the ones she admits she takes. We will do the same for the cardiologist. There has to be a limit for her for health reasons.

I always thought she had all her faculties at 87 yrs. old. I wonder sometimes that she is loosing her "Oops" factor. She keeps me on my toes for sure!

REPLY

Great idea to bring your mother's supplements to the retina specialist and to the cardiologist. My father-in-law who is also 87 believes anything the doctor (not his daughter-in-law) tells him :)

Leslie

Aug 18, 2013
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No surrender
by: Karen

I'm 57, and have had to give up driving because of low vision from AMD. I still work with the help of Zoomtext software, but it's a struggle.

Sometimes it's good to be stubborn, I guess and refuse to give in. Peole don't know how much strength it takes not to just become dependent. I've learned to ask for help when I can't do for myself and found that people are generally kind once they know the problem.

Keep your chin up, Jack. I plan to try my hardest to keep on living my hardest.

Aug 18, 2013
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Supplement Addiction for MD
by: Anonymous

As I stated before, my mother has MD. She is in the last stages with geographic atrophy.

She was diagnosed at age 50 and managed to hold on to her sight for 35 yrs. The past two years her sight has taken a turn for the worse. She has always used supplements - everything under the sun and has spent thousands of dollars on them.

She is so vulnerable and is susceptible to every snake-oil salesman out there who says he can cure MD. I have to try to stay on top of this situation, because she is on some very important meds for her heart too and I am so afraid some of these supplements will inter-act with her medications.

I tell her that her foods are the key to maintaining what vision she has and she agrees with me, but behind my back she orders these crazy supplements. Who knows where they come from half the time? China - Timbucktu? Anyone else with this problem?

She recently put the MD Grid on her refrigerator again after many years - so I am assuming she has put faith in yet another supplement and is testing her vision again every day. It's sad. Her denial is strong.

I pray for some peace for her. I'm not asking her to give up, but what she is doing is dangerous. Any thoughts?

REPLY

I'm sorry to hear about your frustrations with your mom's search for a macular degeneration cure. Do you think you could re-direct her energy and desire for improved vision by helping her identify tasks that frustrate her and then provide a solution with a vision aid for that task? Here are some ideas for visual aids:

Visual Aids for Macualr Degeneration

Or see if she is a candidate for the new FDA approved macular degeneration implant:

Macular Degeneration Implant

Any one else have any ideas?

Kind Regards,

Leslie Degner, RN, BSN

Aug 17, 2013
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Macular Degeneration Supplements
by: Anonymous

After reading your replies, I would recommend taking the supplements as well. As I also have AMD I have been taking Nutrof Total which I saw advertised in the Eye Hospital when my husband was having his cataracts operation.

I hope this will slow down the progression of the AMD.

There is always something to help, and with sites like these it isn't far away.

Aug 14, 2013
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by: margaret

That's the way to think. We should all Accentuate the positive, eliminate the negative.
(good song).

With this attitude, how can you not get to see the lake. Technology has advanced so much in recent years re: AMD.

Aug 14, 2013
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It's All in the Attitude
by: Sisterhood

Hi Jack,

I don't have macular degeneration, but I care for my 87 yr. old mother who is now in the last stages of the disease. She is hard of hearing too. I know you are thinking 87 yrs. old and you are only 56, but this disease is different for everyone.

She was able to keep most of her vision for 35 yrs. and she lived a full life and she and my dad were very independent. She was diagnosed at 50 yrs. old. The past two years is when she really lost her independence due to a sharp decline in her vision.

She had to give up driving, and she moved close to us so we can now help her. We live in a rural area, and a car is of great importance. We drive her where ever she needs to go. She is dependent on us for most things, but she still cooks for herself and lives in her own home and she exercises daily on a treadmill.

Your macular degeneration may progress slowly. I hope this is the case for you as you are young. I will say that my mother always ate the freshest fruits and vegetables, along with a balanced diet. She doesn't drink alcohol anymore, and she never smoked. She thinks her good diet played an important role in slowing the progression of the disease. She feels that her healthy life style kept her from going into the wet form of the disease too.

Take it a day at a time and perhaps you'll get a good run like my mother did. She has a great attitude and still strives to keep what eyesight she has left. Not being isolated plays an important role also. We keep my mother involved in everything we do. I wish you all the best and admire your stand.

Never give up.

Aug 14, 2013
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Do Not Loose Hope
by: Aliza

Dear Jack,

I understand how you feel. AMD is a very serious disease and it is very difficult to accept it at 56.

I have also wet AMD in my right and I have to receive Lucentis shots every five weeks. I am 65 years old. I have been receiving those shots for two years already. I have to cope mentally with the disease and also with the teribble suffering from the shots.

I am still optimistic and believe that in a few years there might be a cure for this disease.In the meantime there are a lot of visuals aids that can help you cope.

I have a relative of 89 years old who has wet AMD in both her eyes and she is still very indepedent and does everything by herself. So do not lose hope. Things might turn for the better for you too.

Aug 14, 2013
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Hang in There!
by: Anonymous

My Mother and her brother both have AMD at ages 84 and 81 respectively. Even though my Uncle is younger than my Mom, his condition is worse, with wet AMD in both eyes requiring eye injections every 6 weeks or so.

They were both diagnosed approximately 20 years ago. And even though they both have AMD, my Uncle's is advanced. They both still live alone and do well. My Uncle still drives, although only locally. He's also an avid reader and has discovered the Kindle which is a godsend.

My Mother's AMD has progressed more in one eye than the other, and she's doing well. I believe the fact that she takes Zeaxanthin & Lutein has helped her greatly by slowing down the progression, unlike my Uncle who doesn't choose to take supplements.

As has been mentioned at this site many times, AMD does not rob you of your sight completely, you still retain peripheral vision. Based on my Mother's experience, I would recommend that you follow a healthy diet and start taking Zeaxanthin & Lutein if you haven't already. My sister and I are also take these supplements in the hope of preventing AMD.

As far as hearing loss, both my Uncle and my Mother both wear hearing aids which has made all the difference in the world in their enjoyment of life. My Mother was very resistant at first, but she's now very glad she has them. I wish you all the best.

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