Why the toolkit
An informed person is a person empowered to be an active agent in preserving their sight, both
- working with their doctor to choose and implement a treatment planoptimizing their functional vision
The more a patient knows about the many facets of the eye-brain continuum, the possible causes of their glaucomatous damage, the tests and measurements used to diagnose and track the progression of their disease, and the benefits and risks of various treatments:
the better able they and those who support them will be able to deal emotionally with the threat to vision they face.
The better able they will be to discuss their disease with their doctor and make informed choices around treatment decisions.
- the more likely they will be to adhere to their treatment plan.
- the more likely they will be to pursue beneficial lifestyle and nutritional changes.
The more likely they are to seek vision rehabilitation
We need an online resource that:
- provides information at many levels, making it a valuable resource for the broadest audience
- presents information from trusted sources written and presented in language that is accessible to the widest possible audience.
- utilizes graphics, animation and video to present complex scientific information in a way that patients can understand and apply to their own eyes.
- provides understandable but thorough explanations of the human eye and the eye-brain connection, the optic nerve, the importance of blood flow, the immune system…
- clearly explains the testing and imaging used by to evaluate a person’s disease and to track the progression of that disease – essential for someone’s ability to understand their test results and understand their progression.
- emphasizes the importance of tools and services available to help patients deal with vision loss.
- explains the various mechanisms for testing visual fields, including how to read the tests, their limitations, the strengths and limitations of the various methodologies..
- offers guidance in communicating with and asking the important questions of one’s doctor.
- doesn’t present multifaceted diseases over-simplistically.
- provides up-to-date links to books, articles, reports, videos, etc. on research and treatment.
Understanding is the source of active engagement
Someone with a vision-imparing disease needs to know:
- How we see - the eye, the eye-brain continuum, ...
- How we see - how vision works
- How vision becomes impaired by various diseases.
- How these diseases manifest
- How their treatment may affect functional vision.
- The stages of visual processing.
- The stages of vision loss
- The ways in which glaucoma, macular degeneration, diabetic retinopathy and other conditions each can affect vision.
- The ways vision loss manifests in functional vision and in activities of daily living.
- The interpretation of clinical tests in the context of functional vision.
- Ways to become aware of vision loss and adaptation to vision defficiencies.
- How rehabilitation can alleviate the effects of vision loss.
Tests amd measurement
Understanding and recording the tests and measurements used to diagnose and track the progression of one's disease will heighten awareness of their visual capabilities and limitations as well as empower them to actively preserve and enhance their abilities to function in the world through vision rehabilitation.
Patients are lucky to even see their field test results. Perhaps a quick glance and a commment -"Looks good. We'll do them again in six months..."
Understanding why a test is performed, what the test measures (and what is limitations are), how it is evaluated, what it is telling someone about the progression of their disease, and what it tells them about what to look for in their visual functioning... These are all essential to someone's well-being.
- What is the visual field?
- Peripheral vision: normal and with glaucoma
- Peripheral vision and fixation
- How does visual field loss relate to glaucomatous nerve damage?
- Objective and subjective tests
- The different tests: visual field, visual matrix...
- Machine-based testing and technician-led testing
- Goldmann and Humphrey analyzers
- The various tests (24-2.30-2, SWAP...) and their effectiveness for various stages of glaucoma
- Your role in the test (including your state of mind)
- Learning curve and common problems with taking the test
- What is your doctor looking at?
- Obtaining copies of your field tests and understanding the printouts
- How often can the tests be taken to effectively track progression?
- The implication of visual fields on your vision loss (e.g., closeness to fixation)
- Visual fields and lifestyle (e.g., drivers license vision tests, driving, night vision, everyday safety...)
- And more.