Losing Sight, Finding Hope: Living with Macular Degeneration
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- เผยแพร่เมื่อ 19 มี.ค. 2023
- 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.
Presented by The American Macular Degeneration Foundation www.macular.org
Created by filmmaker Nick Czerula czvideoproduction.com/
Living with macular degeneration:
Elizabeth Baker - Paralympian, Physical Therapist
Twitter: / lizbaker920
Team USA site: www.teamusa.org/usa-triathlon...
Samuel D. Seavey IV -Assistive Technology Expert for the Blind & Visually Impaired
The Blind Life LLC
www.theblindlife.net
Instagram: / theblindlifesam
Twitter: / theblindlifesam
Facebook: / theblindlifesam
TH-cam: / theblindlife
Sensei Jack Stewart - Tai Chi, Kyudo and Kendo www.barnettradepost.com/finea...
Lori Fletcher
Naturalist - Herbalist
Joan LeBaron
World Traveler
Experts:
Dr. Dorothy L. Hitchmoth - "America's Eye Doctor", nationally recognized, award-winning professor, lecturer and patient advocate www.drdorothy.org/
Dr. Allen Taylor - Professor of Nutrition, Development, Molecular & Chemical Biology, and Ophthalmology
USDA Human Nutrition Research Center on Aging
Tufts University gsbs.tufts.edu/people/faculty...
Beth Daisy - Occupational Therapist, Future In Sight MS OTR/L, ATP futureinsight.org/
Chip Goehring III - Founder and President of The American Macular Degeneration Foundation
www.macular.org
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
Code: QYY8YHBKDVJ2QUZ1, SSZCDDOP5WNSAZXX, CLHZSXGJJF7ZT0IB, V5WFUQIURRSMOKSN, QPNMSOY78UDWDH9Y, Q4MBFMZBCM8LNBNC, CFPTFR4DTTRO0GCD
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.
This is a REALLY great point, and thank you for taking the time to share your perspective. We have been discussing this very topic recently and are looking to our next video projects to address this. Please let us know if you have found any supports in your situation that help!
@@MacularOrg Thank you very much. My own situation is a new diagnosis at 60, both eyes, but no vision loss yet. I'm very active (and proactive) and all I've done so far is research and look a bit for support online. I also started learning braille because although I use audio books too, reading is a completely different immersive experience for me, and one I would/will grieve intensely. I haven't yet found the kind of support I'd like for now, which is AMD peer support, ideally connected to professional support. I do appreciate that people/orgs like yourselves put thoughtful videos on YT, because that is my first goto.
Solo journey makes this diagnosis terrifying. Yes everyone in video has familial support
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.
We LOVE this. First, this is an excellent resource to share with the community, and second, an inspiring way to view this as a "surprise blessing". Do you consider yourself a good writer? Perhaps you'd like to submit a guest article for our website or print newsletter regarding your personal journey to discovering these resources?
@@MacularOrg Thanks for the comment. I love this re-discovery of spoken word, lectures and documentaries that are so easily available. It's like being able to go back to school for free. Quite amazing and fascinating.
In fact I am a writere (and an artist). I have a story to tell, but just can't do much story-telling about this at the moment. Am in midst of a big move AND also happen to have/have to deal with ME/CFS...AND still doing some creative work , though it is now trickier to do (some of it overdue). Maybe a little further down the line we can pick this up again. I'd like to, if possible.
Thanks again.
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 TH-cam & 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.
Geraldine, sadly we've heard this from many patients over the years. We continue to do what we can to offer information to patients and caregivers, and also educate doctors about the patient experience. Very glad that you found some comfort in the video, and wishing you the best possible outcomes from your treatments.
The macular society YT..
....also support which I WILL BE USING ASAP x n
This is exactly the same thing that happened to me. Feel very frustrated when I think of the doctor
SAME HERE..DILEGENT KEEP8NG EYE TESTS UP TO DATE ..FEEL CHEATED... IS THERE A SINISTER SIDE TO ALL THIS? ECONOMIC POSSIBLY. LET,S CHANGE THE SYSTEM..LET,S EXCHANGE RXPERIENCES ASAP. X
@@nesanesa9547q
Thanks for the hope you give to everyone who has MD. Hope is the last thing we all need to live!
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❤
We're very glad you found this video helpful, and inspiring! And thank you so much for sharing a little of your story. It means a lot to us when we see we're making a difference. Be well!
So very good. Through my tears, I have hope.
So glad it could bring you some hope.
I needed this.
I notified my sister, who also suffers from dry AMD.
Very glad this resonated for you.
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!
We are so glad to hear this video brought you some hope, and lifted your spirits! And thank you very much for the kind compliments.
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).
Hello, if you are being armd eye, is your children being too
Does she have dry or wet AMD? Or geographic atrophy? There are treatments for wet AMD, and there are new treatments for advanced dry AMD (geographic atrophy).
And in terms of hobbies, there are many assistive devices these days. Ask her eyecare specialist about low vision services and support groups.
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
Jerry, thank you so much for your lovely comment. It means so much to know that work we do brings hope to people with AMD. And what a great point about sun protection!
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!
That's wonderful! Thank you for sharing that.
I have AMD, if I had been told this would/could happen as a child, not a good thing at least not for me as I remember almost everything I have been told by Dr’s and dwell on these things. In my opinion this is what you hear from Drs most of the time is could / would happen this is causing Fear, Now at 69 and having worked in healthcare field for 40 years I refuse to have all these preventative tests that just keep you coming back, mostly follow the money. People who do genetic testing end up having some kind of pre-cancer surgery and you may never get cancer. I have been much less in fear about disease when not seeing Dr’s and since this is the case I will only be seen if absolutely necessary. This type of medicine is not right. Of course if this doesn’t bother people then just let dr’s fill you with any kind of bull they want. I will just live until I die, and this works for me. I understand that some of this is off topic but I needed to vent.
We keep on hearing : "Get checked regularly, so you will be diagnosed early...." .What's the point ? They have no cure, and from what I see, no safe treatment to slow it down either ..🤨
Amazing and helpful. So true that the diagnosis is given and no resources. Glad that is changing. Thank you.
Ok just today I was diagnosed with macular degeneration. Went to see about some new glasses and dr found it. She said to get on an AREDS II vitamin, but no other referrals. Do I need to see a specialist that would tell me the same thing. At my age it may be it won’t progress that fast before I could be gone anyway. In my early 70’s now. It must be dry macular degeneration, I didn’t think exactly what to ask about it. Lose weight as with everything, stop sweets, I love greens so no problem there. I’ll talk with family Dr to see if my meds will work with a new vitamin and what she might recommend. Hopefully Medicaid and Medicare and insurance cover what I may need. Glad I found your site and support with this disease. 👍🏻
Very sorry to hear about your diagnosis, but glad that you found this video and our site. Lifestyle changes are what you have the most control over, and can have a strong impact on how quickly your AMD develops.
If it will ease your mind, you could get a second opinion, and/or ask for a follow up with your eye care doctor to go over questions. Like, how did they diagnose it? Is it dry AMD? Wet? Geographic Atrophy?
Either way, recent studies have confirmed that the AREDS II supplement is beneficial to people with any form of AMD.
That was a wonderful video. I developed wet MD in my late 50’s and low/double vision is always a struggle. Thank goodness for the injections that have worked for the wet MD. Rehabilitation services have provided me with aids to help keep me working and I have a great vision team🤓
Very glad you've found treatments and new training and gear to extend your independence and learn new ways of working around vision loss. And thank you for sharing with us!
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..
Very glad this was helpful to you.
Great film!
Thanks for being a part of it Sam! Your input was invaluable.
Thank you for all this naterial to mull over.
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.
We are so glad to hear this has been an encouragement for you.
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
Very sorry to hear of your diagnosis, but there are many things you can do to slow the progression. You should also look into Lumithera/Valeda which you are fortunate to have as an option in the UK (not yet available here).
Great video & great job Elizabeth and Dr. Hitchmoth!
Glad you liked it!
Wonderful done and so important!!
This has helped me as the caregiver. Thank you.
That's wonderful to hear! We are working on a similar video for caregivers too!
Awesome video - thanks for doing this!
Glad you found some inspiration in it. :)
Thank you for this inspiring documentary. Now I have something to share with my sons, family, and friends that's concise and educational rather than me sounding like I'm complaining. I owe my "wake-up call" to my wife who challenged me to do and learn new things. So I ran marathons and played golf with her. Now retired and living in Thailand, I'm hoping to be an advocate and teach others here how to cope and adapt to this new life. How can I bring the resources to Thailand?
That's wonderful, thank you for sharing that with us. In terms of bringing the resources to Thailand, it depends on what you mean by resources.The education (like this video) is available anywhere. 🙂
Great human being
Thank you, very helpful.
You're welcome!
Please feel free to reach out to any of us if you need a referral!
Beth, thank you! Can you let people know the best way to find a low vision occupational therapist in their area?
I have seen 4 Opthamologists and they all say I have very healthy maculas but I have wavy vision and one eye is blurry in the middle. Now my other has a small blur. I don't know where to go anymore.
Many thanks 🙏
I’m 57 and just got diagnosed with very early wet amd. This was not fun to hear as ALL my hobbies are up close like wood carving and hunting and so many other things. This gives me a good bit of hope
Very sorry for your diagnosis. But very glad you found hope in this video. It's so important to know there are options to continue to live a life you love, even with some vision loss.
Well I have found out since we caught mine VERY early a strong change in diet may help. Everyone needs to remove seed oils from their diets. Cook with butter, lard, beef tallow for the water and fat soluble vitamins are body needs to fight this
Interesting information
Im 75, shots are working but got infections with avastin. Now on Eyelea..$500.00 a shot at gov hosp..$1500. At U hosp..$3000.00 sy our "brst..thailand id amazinh but
I cannot get medicare...
❤
wow
Oh my good❤ fromnondonesia for you
Got it in both eyes. I'm 85 years old.
Tu so much.. my mom had this and I'm bilateral dry.. hope like in stem cell and new injection for dry and❤️
Bilateral wet AMD and glaucoma which does get pretty frustrating at times. I had hoped to spend my retirement doing handyman type of activities and to travel by car for most of my time but this thought has not become a reality. So I am fortunate to be able to exist with the help of my wife. People must wonder when they see me use an iPhone and take pictures or video as I’m using a white cane but I usually manage by pointing and shooting but often I miss out because I think I’m recording but the phone isn’t doing anything! It’s a lot of hoping and taking time to find a spot in my field of vision I can see through then I turn my head or move my eye direction and have to find the clear spots again!
The good news is that we are seeing an uptick in accessibility features on smart devices. Including better tools for photo and video for people with low vision. Your phone may not have those features yet, but newer phones will have more available.
@@MacularOrg yes the smart phone, iPhone is a great tool for the blind and near blind.
I’ve been going to the hospital since 2014 in the uk, 10 injections for csr and just been told it’s late macular degeneration in one eye..not one bit of advise in all these years! I’m worried for my other eye…
That can be so frustrating! Have you tried going in with a list of questions? We also recommend bringing someone with you into appointments who takes notes and helps you remember things you want to ask about.
I have amd in both eyes. The left is dry and right is wet. I also have catracts in both eyes. I was told removing catracts wouldn't help my vision
3rd year optometry student here: It likely will not. If you think of the eye like a camera, the cataract in your lens is like the lenses of the camera while the retina is like the film. If the film is damaged, changing the lens in the front wont do a whole lot for you. There is also a concern with how the retina will respond to the surgery and what affects that may have on the AMD. Don't be afraid to talk to your doctor and ask questions, it's part of their job to educate! Best of luck to you!
When will be treatment for Retinitis Pigmentosa from Bionic Eye ? Please give me information
Existe il une possibilité de commander des lunettes à distance .un test optique de différentes force de vision.merci de Québec Canada
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
3rd year Optometry student here: there is help out there! Look for a low vision/ vision rehabilitation specialist (a type of optometrist), they will know of resources that can help you plan ahead and help you manage your vision. I know it seems like a bleak outlook right now but the AMD patients I have seen are very happy and do tons of things! I know one guy who still builds houses and hunts for trees to make maple syrup all on his own! Stay positive! Best of luck to you!
I see well at nitr and good color
What are those glasses called and where do I get them?
Seniors in my family in India are suffering from AMD. I don't know if we have any such support system here.
Can you tell us more by when you mean regarding lack of support system? Do you mean medically? Or emotionally?
I think it was Ms Baker who talked about special glasses? Can someone provide a link regarding those glasses?
She was using Eyedaptic glasses.
I never saw it coming I never knew about it but now it's here and I have it I've always already lost the one of my right eye but the strangest thing is I can still see imaginably well Like if you look at a light post I can see the post but I can't see the light or a telephone pole I can see the pole but I can't see the transformer or like an American flag I can see the pool but not the flag Damn shame but that's my right eye My left eye is getting ready to go but here I found out about it too late damn shame but you live on and deal with what you have to deal with That's what I have done for 69 years of my life
My dad has AMD for about 25 years, he just turned 90 this year, he has wet AMD in both eyes, he cannot see anything with his left eye as the bleending in the retina caused huge scars, he can see a little bit from the right corner of his right eye, we are afraid one day his right eye gets as bad as his left one as he has scars on the right one as well. What opthomologist says that with AMD you won't get completely blind does not seem to be true, my dad completely lost the vision on his left eye due to the scars that happened after the bleeding of the wet AMD.
So sorry to hear about your father's experience. Vision loss can be severe, leading to legal blindness, which is different from total blindness (meaning no light, peripheral, or any residual vision in either eye). But it does sound like the vision loss in your father's left eye is quite severe, and we hope that he's able to retain his remaining vision in his right eye. We understand the devastation of vision loss!
I don't have Macular Degeneration but I was born with severe Myopia and now have Glaucoma starting in my left eye..... I'm 47 and although I don't think I'll ever be blind, I have to accept things like I have to stop driving in the next few years. I use a 33" monitor that sits about 30cm away from my face and my resolution is 1366 x 768 haha.
So glad to see you're seeking resources to learn how to, not just cope, but thrive as best you can with vision loss. This is key! Best of luck on your journey. Have you looked into low vision resources in your local area? There are usually some services through the Association for the Blind, or low vision occupational therapy.
Any sucess treatement macular degenration
Can diet reverse the vision?
If you're asking if diet can restore your vision, the short answer is probably not. There are always anecdotal cases of people improving their vision, but the general findings show that eating a macular degeneration diet (more information on our website, or on our cooking show here on TH-cam) can help slow the progression of AMD and help preserve the vision you have. And, as a bonus, you'll just be eating healthier which affects all areas of your health!
do you have any information on NAION? I lost the vision in my right eye last August and have a 25% chance of losing sight in the remaining eye--my doctor said if this happened in front of him there was nothing he could do about it.
Hello, if you are being armd eye, is your children being too
I m only 36 from india..
And treated with wet amd,injected 5 injections
Plz ...Give me any suggessation what should i
do..
Regards
Thank you for your comment. Injections are currently the best known treatment to slow the progression of wet AMD and preserve the vision you have. Also, making important lifestyle changes if you haven't already, such as not smoking, eating a healthy diet, managing weight, exercising, and so on. There are many resources on our site!
A new product called Vabysmo was approved last year . I’ve been getting Vabysmo injections for about a year. I believe my vision has slightly improved.
Hello, after injection, your eye any improved?
You can get inspired and loose eyesight or change your diet. The choice is yours. My friend removed all vegetable oils and sugar from her diet. At a checkup her doctor told her that she was misdiagnosed. He couldn't accept the fact that he is a quack not a doctor.
Hello, if you are being armd eye, is your children being too
There is a genetic component to macular degeneration, so yes, if you have ARMD your children are more at risk of developing it as they age.