Sue gets a lot of referrals for assistive devices from the therapists at OVR’s BBVS (Bureau of Blindness and Visual Services). This one is for a handheld media player called Victor Reader Stream. Check it out, might be something that will help you or someone you know.
Author: Linda Moore
Sue’s New Page 12/15/2016
Would you expect Sue to approach all things in a ‘conventional’ way? Of course not! So for reasons she reveals, she’s practiced walking with an invisible cane. And she has a perfect way to avoid falling off a cliff!
Highlight: Is there a connection between drugs taken for osteoporosis and wet AMD?
Click here for the article “A Troubling Link Between osteoporosis Drugs and Macular Degeneration.” There MAY be a link but this article says “Despite the finding, Dr. Etminan, a pharmacological epidemiologist in the Department of Ophthalmology and Visual Science, cautions that it’s too soon for people to stop using the drugs or to avoid taking them, because this is the first study to show a link. Other large-scale studies using other patient databases need to be done before drawing firm conclusions.”
Other Articles
Click here for article “Oral Bisphosphonate Use Poses Risk of Wet AMD”
Click here for article “Examining the Link Between Osteoporosis Drugs and AMD”
Click here for article “Bone Meds Fosamax Boniva Linked to Blinding Macular Degeneration”
VIDEO: Summary of Research & Developments – 2016
Here’s a very extensive & HOPE-full video (50 minutes) “Summary of Research & Developments – 2016” from June 2016 presented by Dr. Dan Roberts, Director of MD Support (mdsupport.org)
Click here for the printed transcript
Update: Where can I get financial help for the shots I need for my wet AMD?
One of the members of our Facebook group shared with us information about a Patience Assistance Network (PAN) Foundation (US) which has helped her to pay for shots when her insurance would not pay. PAN’s purpose is to “help under-insured people with life-threatening, chronic and rare diseases get the medications and treatment they need by paying for their out-of-pocket costs and advocating for improved access and affordability.” To qualify, you must be within their income guidelines and the medication must be on their list. This program applies to more than just medications related to vision.
Click here to find out more about the PAN Foundation. Their available funding fluctuations so you may have to check with them regularly.
Click here for a list of other Patient Support organizations including from the companies who make Lucentis and Avastin.
Click here for the company who makes Eylea.
Click here for a company in the US called GoodDays.
Click here for a list for assistance with the medications as well as with other expenses.
In the US, you may also qualify for Social Security Disability which would give you a monthly income and Medicare benefits. Click here for that information.
Please contact me directly (light2sight5153@gmail.com) or leave a comment on this page if:
- you live in the US and have experience with any of these organizations
- you live outside the US and know of any similar organizations in your country
updated 12/13/2016
Sue’s New Page 12/13/2016
“What do you want to be when you grow up?” Sue asks those of you who are among the younger people affected by retinal disease. But also of those of you who can benefit from vocational rehabilitation which can include retraining. She’s written about a few other things and tells us why she doesn’t have enough hands!
Sue’s New Page 12/11/2016
One of Sue’s goals is to be able to get across the street on her bike. She’d told the O&M guy that and so she was surprised when he brought her a white cane because she doesn’t need it. Rather than reject the cane and not participate in the instruction, she’s learned quite a bit about its history and how it can help her should she need it in the future.
Sue’s New Page 12/9/2016
Sue’s been waiting a long time (it seems to her) for the O&M Therapist (Orientation & Mobility) and they’ve finally worked together. She now has career advice for us.
Sue’s New Page 12/7/2016
One of the many endearing things about Sue is that she is honest. She did something she should not have and she turns it into a lesson for us all.
Sue’s New Page 11/5/2016
The topics in this page range from her photograghy & the show her photos are in, Dylan Thomas, not wanting to be road kill and libraries. She calls it a hodgepodge, I call it…
My Macular Degeneration Journal 