Newly blind in both eyes

Posted by tridy35msw on 5/18/2012 at 11:45 PM

I have a 46 y.o. brother who is schizophrenic and pulled his own eyes out 3 days ago during a psychotic episode and my family is totally devestated. I am in the Los Angeles CA area and am looking for any type of resources. He is very high functioning and this is going to be a total life changing experience for him and the family. He was living independently but we are now seeking a specialized assisted living facility for the blind. If anyone has any suggestions regarding a seeing eye dog or anything you recommend for a newly blind individual i would greatly appreciate it. Thank you in advance!!!

There are currently 2 replies

Re: Newly blind in both eyes

Dear tridy35msw:

This is Maureen Duffy, the VisionAware social media specialist and a long-time blindness rehabilitation professional: http://www.visionaware.org/section.aspx?SectionID=...

I appreciate your writing and I also apologize for the delay. Since no one has yet responded, let me try to answer the many questions you have.

I do have professional experience with a situation similar to your brother's and your family's. There is hope, and there is much that can be done, although it will require coordination and oversight to keep all of these different service delivery systems working together. I'm guessing you're an MSW from your screen name/signature, and if so, that will be very helpful.

As I see it, there are several systems that have to work together for your brother: the mental health system, the blind rehabilitation system, the medical system (i.e., ophthalmology to eventually replace your brother's eyes with prosthetic ones, and perhaps the long-term care/assisted living system.

As a blindness rehabilitation professional, I cannot speak to your brother's mental health treatment – but I can discuss options available through the other systems.

Assisted Living: I can't speak to the status of your brother's mental health, but blindness alone usually does not require that an individual relocate to assisted living or other levels of long-term care. Throughout the years, I have worked with thousands of totally blind persons who were able to live independently after receiving specialized and intensive instruction in the skills of blindness, including adaptations for all kinds of daily living skills.

If your brother does need to live in an assisted living environment, it is my experience that staffs in such facilities are usually not trained to teach the skills of blindness. It will likely be necessary to request that an outside blindness agency send in staff to do blindness-specific independent living training. I have done this myself for many years, in many different kinds of long-term care facilities, so I know it is possible and is considered best practice.

Blind rehabilitation: These services include learning how to walk inside and outside independently and learning how to perform all types of daily living activities independently. On the VisionAware web site, we have a good explanation of what the blind rehabilitation system is, as well as what types of professionals provide these services. Here is the page: http://www.visionaware.org/section.aspx?FolderID=8...

Your brother is in the Los Angeles area, where there are some top-notch blind rehabilitation agencies to help him (rehabilitation) you, and your family (support groups and counseling).

Here is a link to our directory of blind rehabilitation services. You can scroll down to find the listing of blind rehabilitation agencies in California: http://www.visionaware.org/directory.aspx?action=r...

In addition, I would suggest that you also contact the California state rehabilitation agency. We have a listing for it here: http://www.visionaware.org/directory.aspx?action=p...

It will be important to coordinate services from these providers as your brother, you, and your family move forward.

Medical/Ophthalmology: You say that your brother has removed his eyes, so I assume that one future consideration would be replacement with prosthetic eyes for appearance and cosmetic purposes (vision cannot be restored). In my own career, I have worked with several clients whose eyes were replaced in this way.

These are my beginning thoughts, which I hope can be helpful. If you need more – or more detailed – information, please do write again. I will be happy to help you.

Re: Newly blind in both eyes

Hi Tridy35.
I hope this is ok for me to
write and offer my own
history with battling
Schizophrenia and perhaps
your brother will find comfort
in knowing that he is not
alone. I'm new here to AFB
and when I saw your topic
appear I wanted to cry
because I to suffer from
Schizophrenia (I am also
High functioning). I'm a 47yo
male and about 12 years
ago I fell into psychosis and
began to destroy my
hearing.eventually after 7
years of this up and down
struggle with this nightmare I
finally pulled out the bones
and eardrums of both ears. Then in 2007
I began to destroy my sight
with various methods.I
struggle daily with controlling
this and not doing what your
Brother has finally done.At
the moment my sight is, right
5/180 and left 20/400. I can
fully understand your
Brother and it is so
wonderful that he has you
and your family helping him
through this.It can be a very
lonely place to be.Most
people cannot bring
themselves to understand
why or how someone could
do this to themselves so
they tend to shy away from
such individuals.In fact it
was impossible for me to
find any one for 12 years
who was going through the
same issues I was/am in till I
came across your letter today.I
thought I was alone. I even lie when asked by
other Deaf,Blind or
DeafBlind people what
caused my DeafBlindness
because the times I have
shared my history even they
tend to wonder how I could
possible have done such a
thing and suddenly I'm left
there standing alone and
treated like a leper.Right
now though things are
looking up and several
months ago I reached out
(which is rare for me to do
as I'm a recluse) and asked
for help. I contacted my local
Department of rehabilitation
and from there I was refered
to the local Blind center. So
far I have received so much
training and help (without judgement) that my head is
spinning.There is hope,help and caring people out there for your
brother Tridy.If he uses the
computer and would like to
talk/email/chat with me I
would be thrilled to talk as
well with him. My email is robsspoon@gmail.com
I see that you wrote this post in May so i hope all is well for both you and your Brother. My best regards.
Rob.