Ask the Health Leader: Our Best Advice

By MacularDegeneration.net

2 min read

We asked our Health Leaders what they wish someone had told them when they were first diagnosed. After looking back on their journeys, they offered their best advice.

Andrea

My advice to others who have recently been diagnosed with macular degeneration is simple. Educate yourself on as much as you can. Focus on the main areas of the disease: treatments, diet, exercise, mental health, vitamins . . . and give yourself some grace. This is not easy, but you're strong and you will find your way.

Linda

Knowledge is power, so connecting with a knowledgeable, accredited source like the MacularDegeneration.net community is also very critical. Find a place to nurture and guide you through your journey. This website has been my saving grace.

Debbie

Reach out to everyone around you for help. Do not hesitate to ask for help, sharing this story of macular degeneration may just help someone else in the future.

Wendy

My advice would be, first: Don't panic. This disease often moves very slowly. Then, find out exactly what your diagnosis is (wet or dry), what stage, and whether it's one or both eyes. Ask about the suitability of AREDS2 supplements for you and how to use an Amsler Grid. If you have wet macular degeneration, make sure you know which medication is in your injection and what the ongoing treatment plan is.

Cora

I would advise anyone newly diagnosed to learn all they can about macular degeneration. Knowledge is power. Make any necessary accommodations, then don’t dwell on it. Enjoy the here and now.

Richard

Don’t panic! Even though I know you will . . . it’s all part of the process. Just know that this disease is a “slow mover,” and it may take years or even decades before your central vision is impacted. Learn all you can about AMD [age-related macular degeneration], diet, exercise, BMI (body mass index), and such.

Visit and communicate with your vision specialist on a regular basis. Take reminder cards with you when you visit your eye doc so you don’t forget to ask things you otherwise might.

Be an active member of our group MacularDegeneration.net or a like group. You can participate by reading, asking questions, offering advice, or just venting if that helps. Knowledge is power, and we are stronger as a group than we are alone.

Sharon

Find a retinal specialist you have confidence in to provide your care. Follow the treatment plan and recommendations of your retinal specialist. Above all, hang on to hope.

The power of sharing experiences

Though a new diagnosis can be intimidating, living well with macular degeneration is possible. Our Health Leaders shared their experiences to make the journey a little easier for those facing a macular degeneration diagnosis for the first time.

If you have questions for others with macular degeneration, head over to our forums to connect. If you have some invaluable advice of your own to share with the community, leave it in the comments below!

Share your macular degeneration journey with us!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MacularDegeneration.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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ValerieD12 Member
Thank you for your input. I am processing my "diagnosis" - which is not really a diagnosis so much as a confirmation that drusen are present in both eyes. I have done a lot of reading. My ophthalmologist advised I start AREDS 2. I started them immediately. My ophthalmologist spent time with me and told me this was very early diagnosis and I won't have my vision affected for a long time. She was clear that this was a progressive disease but there was a lot of research being done so there is some hope for a treatment on the horizon. She set another appointment in 4 months. In other words she seems well informed and thorough. Given the early diagnosis and my reading, I am questioning which of the formulas of AREDS 2 I should take (I am looking at a different formula with less zinc in my next purchase). I guess I am wondering about when it is appropriate to be seen by a Retinal Specialist rather than this particular Ophthalmologist. Do I need a referral from this Ophthalmologist to see a Retinal Specialist? It just doesn't seem real until there is some impact on my vision, which may not happen for "a long time" (years not months). Best wishes to everyone out there. It seems there are many paths, but it is good to know there is a community of support. Valerie
1. ValerieD12 Member
 <inline-mention username="Sharon Moore" user-id="3129425"/> Thank you. I appreciate the input. I have appointments with both PCP and Ophthamologist later this year and will ask about a referral.
2. Sharon Moore Moderator
 <inline-mention username="ValerieD12" user-id="8294651"/> while you are waiting for a referral later this year, the Amsler grid is a handy tool to monitor for changes in your vision. Here is a link to one you can print out. I keep mine on the refrigerator so I can’t miss it. https://www.specialtyeyeinstitute.com/services/retina-care/free-amsler-grid/ Regards, Sharon Moore patient leader
Tjw3 Member
Just wanted to see if anyone has a recommendation for a specialist in the Phoenix metro area. I was diagnosed about a year ago and I have dry moderate stage AMD although looking back I now believe I have had it at least 7 years now. The Dr I see now just keeps telling me to come back in 6 months and can’t give me any prognosis. Thanks <a href='http://J.Wright' target='_blank' rel='noopener noreferrer ugc'>J.Wright</a>
1. Sharon Moore Moderator
 <inline-mention username="Tjw3" user-id="8320411"/> I don’t have a personal recommendation but you can find who is available using this link https://www.asrs.org/find-a-specialist You can check reviews at https://www.healthgrades.com/?gppc=1&cid=pa_BRAND&utm_source=google&utm_medium=cpc&utm_campaign=BRAND&utm_term=Healthgrades&gclid=Cj0KCQjw7aqkBhDPARIsAKGa0oImeW9HWJUCtaUyIhGofncQUsLAWZ3LX8-Z3CoLPrzry_mcbBnDmx8aAouSEALw_wcB I think the prognosis varies with individual people. Lifestyle habits and genetics play a role with macular degeneration. Good luck with your search for a new doctor. Regards, Sharon Moore patient leader
CommunityMemberf8078d Member
Doc says to take MacuHealth. Can't afford it, so am taking AllReds 2. Diagnosed 6 months ago, and am under 70. Dad takes AllReds for his AMD, and he is 93. 
1. Sharon Moore Moderator
 <inline-mention username="CommunityMemberf8078d" user-id="8534408"/> I could not fin Allreds 2. Did you mean Areds2? Sometimes autocorrect changes our words. My doctor suggested I take the generic Areds2 found at Walmart or Sams Club. They are more affordable than the name brand ones. I’d Dad’s vision still okay? Regards, Sharon Moore patient leader
CommunityMemberf8078d Member
Oops. I meant Alreds2 by Preservision. Dad can't see well. Combine AMD and diabetes. He hears well. Mom reads to him.
Margo Member
This site is invaluable. Although I’m in The UK, there is so much information here that I didn’t know about. I started my injections for wet macular disease last October, but had I known then what I know now, I would have been treated earlier. Having said that, after 8 injections and a cataract op, there is an improvement. <inline-mention username="Sharon Moore" user-id="3129425"/> . 
1. Sharon Moore Moderator
 <inline-mention username="Margo" user-id="6642928"/> I am glad you have seen improvement in your vision following injections and surgery. Early treatment results in better outcomes. I encourage you to learn all you can about the disease. Regards, Sharon Moore patient leader

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