Macular Degeneration - How Does It Change Your Life?

by Michelle
(Independence, KS, USA)

How does macular degeneration change your life?

REPLY

Hi Michelle,

That is a question with lots of variables. If this is something you'd really like to know more about then I'd suggest a couple of books written by patients with macular degeneration. They are:

1. The First Year: Age-Related Macular Degeneration: An Essential Guide for the Newly Diagnosed

2. Macular Disease: Practical Strategies for Living with Vision Loss

3.Overcoming Macular Degeneration: A Guide to Seeing Beyond the Clouds

Kind Regards,

Leslie

Macular Degeneration Support Groups

Are there any macular degeneration support groups in the Northern Virginia area?

My husband has AMD and we have not found any one location where he could try out the numerous visual aids, etc. available which would improve his quality of life. Many of these "visual aids" are very expensive and prove to be difficult to use and often of inferior quality.

I have seriously considered trying to start a program in our area whereby the various manufacturers would come and demonstrate their products. This could be coordinated with our local retina specialists and perhaps the hospital in this area. Does anyone have experience with or suggestions for starting such a project?

REPLY

Hello,

Thanks for your post. I found only one support group that was listed at www.MDSupport.org for Virginia. This may not be close for you but here is the contact info:

Virginia

Westminster Canterbury on Chesapeake Bay MD Club
3100 Shore Drive, Apt 452
Virginia Beach VA 23451
Facilitator: Amedeo H. Galvani, CAPT USN (Ret)
Email: algal@wcbeach.com

Also consider getting help from a low vision center or low vision specialist. Here are several resources for you to find a low vision specialist:

1. The American Foundation for the Blind (AFB) provides a directory that lists visual rehabilitation programs nationwide. You may call them at 1-800-232-5463.

2. The American Optometric Association provides a list of optometrists. When you perform a search be sure to check the box that says "Low Vision Rehabilitation Section.

3.LowVision.org provides some great resources and information on low vision.

Kind Regards,

Leslie Degner, RN, BSN

Helping a partner with newly diagnosed Macular Degeneration

by Anne
(Sydney, Australia)

My husband was recently diagnosed with wet MD. I am doing as much research as possible to learn about and understand the disease and your website has been very informative and I can't wait for your newsletter to arrive in my inbox!

Since being diagnosed, my husband has become withdrawn, stopped reading (he used to read all the time and I am buying him a Kindle for Christmas!)and throws tantrums (worse than my 2 year old granddaughter!) when he cannot see or do something.

It almost seems he has resigned himself to the fact that he is going blind and there is nothing he can do about it.


I have adapted our daily diet to include the food you suggest in your newsletters and he seems keen to learn about that.


Do you think it would help if he talks to a therapist?

Thanks you so much for the wonderful work you do.

Regards,

Anne

REPLY

Hi Anne,

Thanks for taking the time to share your story and your concerns for your husband. I'm sure there are many other readers who can identify with you and your husband. It is very frustrating to experience vision loss along with the difficulties of trying to do things as one did before.

Therein lies the problem - learning to do things differently. You and your husband could greatly benefit from getting low vision rehab services. These specialists assess one's usable vision and then teach patients and (their spouses) how to maximize their vision.

Vision Australia offers this type of service. Please make an appointment for you and your husband.

Let us know what you learn and how it has helped you and your husband live with AMD.

Kind Regards,

Leslie

Living Alone with Macular Degeneration

by Jean
(Natick, MA)

Are there any studies about people with advanced ARMD living on their own? I am a widow, fiercely independent,still drive and work, but have lost central vision in one eye, and have a compromised second eye (30+ lucentis injections so far, plus glaucoma).

I'm trying to plan sensibly for the future. I will appreciate any advice and/or connections you can offer.

REPLY

Hi Jean,

The best way to find out if you can continue to live independently is to meet with a low vison specialist. Some of them will do home visits to evaluate your home and make suggestions for what to do in your kitchen, bathroom, with lighting, etc.

Here is a link to some of the low vision services in MA

Low Vision Services

Let me know if you are able to find one.

Kind Regards,

Leslie

Advanced Macular Degeneration

by Rebeca
(United States)

Dear Leslie,

My mother after 48 years of nursing has been diagnosed with advanced macular degeneration.

I would like as much information as possible if you could suggest what books or sites to start my reading.

Also her only hobby is knitting and it has become a struggle.

I would like to get her a lamp as well as a magnifier to help her but do not know which brands are better than others.

If you have any suggestions I would appreciate it.

Thanks. Rebeca

REPLY

Hi Rebeca,

There is a lot of help available for your mom. Reading about macular degeneration is a great place to start. Here are my 3 favorite books:

1. Macular Degeneration: The Complete Guide to Saving and Maximizing Your Sight

2. Macular Degeneration: A Complete Guide for Patients and Their Families

3. Macular Disease: Practical Strategies for Living with Vision Loss

There are several other good websites as well. They are:

1. www.MDSupport.com

2. www.macular.org

Another source of help for her to have low vision rehab and to visit a local low vision store. Let me know where she lives and I will try to find that for her.

In order to continue knitting, a good vision aid for macular degeneration is a lighted, hands free magnifier. The one that seems to be the post popular is this one from FirstStreetonLine.

Hands Free Lighted Magnifier

Please let us know if you have any more questions.

Kind Regards,

Leslie Degner,RN, BSN

Eccentric Viewing - Training

by Don P.
(New Smyrna Beach, FL)

Leslie,

First, thanks so much for this fabulous website!!

Our agency provides Low Vision Therapy deployed by an Occupational Therapist, designed specifically for macular degeneration patients.

We utilize Eccentric Viewing and various environmental modifications to improve their safety at home. My question is this: Can you recommend a Power Point Presentation that encompasses this particular therapy and how it can benefit our LV patients? Thanks for your response.

REPLY

Thanks Don for your question. Macular Degeneration Support has a self-training module on eccentric viewing. If you want to check it out click here:

Self Training for Eccentric Viewing

Kind Regards,

Leslie