Community Views: Advice for the Newly Diagnosed
Recently our editorial staff posted a question:
What is a good piece of advice for someone newly diagnosed with MD?
These prompts, or questions are posted to allow the community to share their experience with macular degeneration. It was not surprising that many responded with their advice.
Seek treatment with a good RS
"Research for a good retinal specialist."
"Find a retinal specialist...one you trust and one who explains everything you ask about MD."
"Do not hesitate in seeking treatment. Fear not."
"Find the best doctor and follow his/her advice!"
“It's vital to seek out the best doctor we can for our macular degeneration.”
“Get a good Retinal Specialist!”
Not surprisingly, the community placed great emphasis on getting treatment from the best retinal specialist available. I had a choice of four doctors at the only retinal clinic available in my area. The first doctor was competent but not open to a lot of questions. I have changed doctors and now have one that is both competent and caring.
Follow your doctor's instructions
“If you’re getting shots, don’t let it go too long in between them like someone I know!!”
“Take AREDs faithfully.”
“Take eye vitamins.”
“SUNGLASSES 😎 always, when outside!”
“Write down your questions and ask your doctor all of them. I find my retinal specialist to be very informative and caring.”
“Talk with your doctor, don't be afraid.”
“Use your Amsler grid everyday.”
“Be compliant with doctor's orders and recommendations.”
We had many community members share tips about following their doctors instructions. I know that it’s important to work with my doctor and to follow his instructions precisely. I have a list of questions prepared ahead of each visit to my doctor. I ask him to clarify anything I do not fully understand.
Research your condition
“Research, and ask a lot of questions at your appointments.”
“Don’t be scared and try to educate yourself as much as possible.”
“Don't panic and do your research.”
“Learn as much as you can”
I agree with other community members that it is important to understand macular degeneration. My background as a registered nurse was helpful to me in learning all I could about macular degeneration. I know which websites are trustworthy and those to avoid. Getting the wrong information can be worse than having no information.
“If you have difficulty reading conventional print, find your nearest state or national organization for people with vision impairment. They will be able to provide you with advice and training To make the most of what Vision you still have.”
“Find a really good support group (this is one) and there may be a group within your RS office!”
My family is my greatest support. I have also gained support from others on the maculardegeneration.net website and Facebook group.
“Focus your mind and attitude on what you have; not on what you don't have.“
“Stay calm. Trust your Doctors.”
“Don't worry 😉”
“Take 1 day at a time and enjoy every moment of it.”
“There is tremendous hope for treatments and a potential for a cure..Also stem cell potential to restore vision is very likely..In the mean time enjoy every day to the fullest.”
Remaining hopeful is important to my mental health. I choose to believe I have a bright future and that a potential treatment or cure may be right around the corner.
True or false: You always know if you have macular degeneration.