Blind and Visually Impaired Community
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Going blind - Advice? (self.Blind)
submitted by CHM_3_9
Hey r/blind!
I am not blind now, but I will slowly loose my vision thanks to choroideremia. I'd love to hear general thoughts and advice you'd have for someone in my situation.
I'm sure you all have different levels of visual impairment for different amounts of time, but I'd love to hear from everyone.
Some potential questions/discussion topics:
How do you deal with a lack of vision psychologically?
What would you recommend I do practically while I still have vision?
How have you found people to support you?
What jobs do you have/have you found to be particularly conducive to the vision impaired?
Thanks for any thoughts/input you have!
I am not blind now, but I will slowly loose my vision thanks to choroideremia. I'd love to hear general thoughts and advice you'd have for someone in my situation.
I'm sure you all have different levels of visual impairment for different amounts of time, but I'd love to hear from everyone.
Some potential questions/discussion topics:
How do you deal with a lack of vision psychologically?
What would you recommend I do practically while I still have vision?
How have you found people to support you?
What jobs do you have/have you found to be particularly conducive to the vision impaired?
Thanks for any thoughts/input you have!
KillerLag 5 points 6y ago
Sorry to hear about your eye condition.
In terms of dealing with the loss gradually, it depends on many factors. The condition may progress very slowly so you don't notice the loss until one day, you can't do certain tasks (this happens often with visual field issues). How well does your family support you? Are they discouraging you from seeking assistance now, or do they help you? Another thing is, do they help you *TOO* much? I've had teens who can't tie their shoelaces because someone else always did them.
You should talk to your doctor regarding a rough time frame (difficult for this kind of disease, but better than nothing) and to your family about any goals you want to accomplish before total loss of vision. One of my clients was a museum curator, and she made a list of the great museums and works of art she wanted to see before losing most of her vision. Depending on your own individual goal and financial resources, you would have to decide what you want to do. Keep in mind, though, that vision loss itself doesn't always preclude you from accomplishing a goal later. I had a client who wanted to run an ultramarathon on every continent, and he ended up doing that after he lost his vision (And yes, that includes Antartica. He was a dedicated guy).
You may also want to consider learning skills such as O&M and other daily living things while you have some vision. Having vision makes it easier to pick up some concepts, and then you can practice with blindfolds/occluders. That would also include using adaptive technologies as well, although depending on where you live, you may not be eligible for government coverage yet.
In terms of available jobs, there is a wide range, although getting the education, experience and certification can be difficult. I've met blind lawyers, computer technicians, martial arts instructors, CPR instructors, teachers, musicians, chefs, receptionists, and teachers. I've met two active police officers (one that works in a warehouse and another that does translation work) and one guy who served in the military while blind (he was a special case, though. He spoke 8 languages and worked as a translator in a carrier of some sort). Computer programers, woodworkers and massage therapists. With adaptive technology, a lot more options have become available,
In terms of dealing with the loss gradually, it depends on many factors. The condition may progress very slowly so you don't notice the loss until one day, you can't do certain tasks (this happens often with visual field issues). How well does your family support you? Are they discouraging you from seeking assistance now, or do they help you? Another thing is, do they help you *TOO* much? I've had teens who can't tie their shoelaces because someone else always did them.
You should talk to your doctor regarding a rough time frame (difficult for this kind of disease, but better than nothing) and to your family about any goals you want to accomplish before total loss of vision. One of my clients was a museum curator, and she made a list of the great museums and works of art she wanted to see before losing most of her vision. Depending on your own individual goal and financial resources, you would have to decide what you want to do. Keep in mind, though, that vision loss itself doesn't always preclude you from accomplishing a goal later. I had a client who wanted to run an ultramarathon on every continent, and he ended up doing that after he lost his vision (And yes, that includes Antartica. He was a dedicated guy).
You may also want to consider learning skills such as O&M and other daily living things while you have some vision. Having vision makes it easier to pick up some concepts, and then you can practice with blindfolds/occluders. That would also include using adaptive technologies as well, although depending on where you live, you may not be eligible for government coverage yet.
In terms of available jobs, there is a wide range, although getting the education, experience and certification can be difficult. I've met blind lawyers, computer technicians, martial arts instructors, CPR instructors, teachers, musicians, chefs, receptionists, and teachers. I've met two active police officers (one that works in a warehouse and another that does translation work) and one guy who served in the military while blind (he was a special case, though. He spoke 8 languages and worked as a translator in a carrier of some sort). Computer programers, woodworkers and massage therapists. With adaptive technology, a lot more options have become available,
Groundbreaking-Bus1 1 points 11m ago
Hi - I'm not sure if you're already connected with us, but the Choroideremia Research Foundation has many resources available for patients, family members and medical professionals regarding CHM, including patient and scientific conferences, webinars, virtual support meet-ups and more! Please visit our website for more information on #choroideremia #curechm at: https://www.curechm.org/
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