Losing Sight, Finding Hope: Living with Macular Degeneration

From macular degeneration diagnosis, to losing sight, to new ways of living and hope for the future - five patients share their stories, their vulnerabilities, and the wisdom they've gained through their journey living with vision loss from macular degeneration. Expert guests shed light on what we know about macular degeneration, and provide hope for what can be done now, and what's coming in the future.

Living with macular degeneration:

Elizabeth Baker - Paralympian, Physical Therapist

Samuel D. Seavey IV -Assistive Technology Expert for the Blind & Visually Impaired
The Blind Life LLC

Lori Fletcher
Naturalist – Herbalist

Joan LeBaron
World Traveler

Experts:

Dr. Allen Taylor - Professor of Nutrition, Development, Molecular & Chemical Biology, and Ophthalmology
USDA Human Nutrition Research Center on Aging

Chip Goehring III - Founder and President of The American Macular Degeneration Foundation

Matthew Levine - Director of Grants, Partnerships, Advocacy for The American Macular Degeneration Foundation

Music:
Cody Martin, Transcendent
Lincoln Davis, Skeptical
Dresden The Flamingo, Paul Hollywood
In This World, Luck Dragon

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[RSEFX]

The discovery of just how many audio books and stories are available on YT alone due to AMD has been a great boon. (Also how many great BBC radio dramas, old time radio and other audio "treats" are also available on YT! Tons of stuff for free---and the BBC radio dramas are almost all AD-FREE!) This has allowed me to read so many more books WHILE i was doing other things, all kinds of books and stories that I would otherwise not have read!..a kind of surprise "blessing" due to vision loss.

[Seniorachica]

I am 70 years old now I’ve been getting injections every 4 to 6 weeks in both my eyes for wmd, (since 2016). I am so thankful for the sight that I do have, even though there isn’t a cure right now, MAYBE TOMORROW there will be. I thank God for the vision that I do have right now
Thank you for this great channel. I’m glad I found it. Thank you so much for all the great info/ efforts that went into it, it BLESSES people like me.
Lots of love goes out to all of you!

[jerrymoyer]

I AM SO GLAD to have found your production. It gives me hope. I am A retired US Army Bandsman and Mailman. AMD started about 10 years ago and is now rapidly progressing. Down to left eye only, right eye is like looking into a shower curtain. I spent years in parades not being allowed to wear sunglasses because they didn't "look military " in group formation. if you got a profile it limited promotions so I just sucked up the discomfort. now it's all caching up. thanks again for your great information ...Jerry

[subnoizesolider]

I'm really happy I found this I got diagnosed with Macular degeneration all of a sudden. I've always had eye problems ever since I was a kid then I found out that it ran on my dad's side of the family. For me was that everything white looked yellow and wavy and because of that I had to go in for emergency retinal detachment surgery 5 years ago. Nowadays.. it is a challenge not every day is a challenge, But it is something that I have came to terms with after watching this that this is just something I have to deal with and it doesn't have to make me sad or depressed to go through it. Hearing many different perspectives of people who also have it, in a sense, is therapeutic. This has helped me.. and I will be looking further into this Foundation❤

[lyndagabriel]

Thank you for this, it helps in part. Here's what actually makes things harder, . "You're not alone" it says in your doc. Then, like everything else I've seen/heard so far, goes on to profile people who have a spouse and/or kids and/or parents. Never do I see stories of those of us in the largest demographic of some cities now: we live alone, and we don't have a spouse, kids or parents. Maybe it is a lack of understanding of the level of fear for the future for those of us in this situation, especially newly diagnosed. Please. Profile people like us. Show us how they cope, including finding and building support of all kinds. I'm sure it's completely doable, but seeing examples, not just all these people with built-in support... that would go a long way in terms of hope.

[geraldinesmith]

I live in the UK & have just received the 1st of several eye injections for wet macular degeneration in both eyes. However, I remember my Opthalmist telling me I had this disease, but he never suggested any change of lifestyle etc to help keep it at bay. All he said was it was age related. - he didn’t even tell me there was a possibility it would turn into WMD eventually, ( which it did.) So I feel a bit peeved off because of lack of information & where to go for help. I finally found things out for myself through YouTube & Google videos. Now I’m hoping that I haven’t waited too long for the treatment to be successful. Your video has comforted me a little. Thank you.

[alibrowne]

This is an amazing site. Thank you! Hearing all of these experiences and positive people. I was diagnosed just 2 weeks ago with Dry Macular Degeneration in a very nonchalant way while collecting my new glasses from the optician. I had never heard of it. My GP sent me immediately to Moorfields Eye Hospital in London where I live. That was Thursday. Now waiting to find out what stage I’m at and what should I do! I work full-time and live alone. Very worried right now but will wait to hear from the doctors next week. I’m a mega active person so this worries me. Thank you everyone. X

[katrinafmv]

My mom has MD. She was diagnosed with it when she was 34. And now she is 49.
I’m searching every month if our scientists finally found a medicine. I just want my mom to see clearly and do her hobbies: reading, painting and sewing (she can’t do it anymore).

[lynbryd]

Thank you so much for sharing this video of hope. I am dealing with the emotion of losing something I had.
This video has been an encouragement to me today.

[tomnanD]

I needed this.

I notified my sister, who also suffers from dry AMD.

[tomithot]

Applause ... thanks for all of the good information. I was diagnosed 30 years ago, been doing what you suggest, and oh yes ... I am still getting around, quite well. Not a great reader, but thank heavens for modern technology ... I am still in the loop!

[terrysager]

Amazing and helpful. So true that the diagnosis is given and no resources. Glad that is changing. Thank you.

[alvingonzagadomingcil]

Thanks for the hope you give to everyone who has MD. Hope is the last thing we all need to live!

[elk]

Recently found out I have age relatedd macular degeneration. This was very helpful. I felt sorry for myself and didn't want to end up like my dab, U am learing to adapt adjust and over come. Kowing you are not alone with your feelings is very helpfu. Thank you..

[maureenmellott]

So very good. Through my tears, I have hope.

[Acode]

Thank you for all this naterial to mull over.

[sweetcello]

Welll I just had early diagnosis and only given sample of pharmaceuticals vitamins. I’m an interior designer, play cello, pianolove to travel- drive mountain roads!, cook, read… I’m single without support system so a bit freaked out. How much time left to plan

[JayC-ur]

Great video & great job Elizabeth and Dr. Hitchmoth!

[sarahwold]

This has helped me as the caregiver. Thank you.

[pattimagee]

Awesome video - thanks for doing this!