DARS


As I live in Texas, the state vocational rehabilitation program is called “Department of Assistive and Rehabilitative Services.” (DARS) This is a wonderful program for individuals with disabilities who wish to go to college and/or get a job but might need a little assistance doing so because of their disability.

I first heard about DARS a few years ago when a professor at my previous school told me about Vocational Rehabilitation. At that point, I was majoring in Deaf Education. (Funny how I’m now about to graduate with my Rehabilitation Studies degree!) I went and met with a case manager, “M”, and she was very helpful in educating me about DARS, the qualifying process, and the services they provide. Since I’m not legally blind, although I’m very close, we didn’t know if I’d qualify. However, they require you to have 30 degrees of field vision or less in order to qualify and that is exactly what I have. As soon as I gave them the paperwork, we were on the way.

Just so you know, there are different divisions at DARS. There is a Division for Blind Services, Office for Deaf and Hard of Hearing, and then what I call the “regular” DARS which encompasses basically all the other disabilities such as cognitive impairments and physical impairments. You can go in for a session where you meet a case manager and they learn about you, you learn about their services. After that, they help counsel you and then refer you for other services. Keep in mind that all my services are either to help me right now, or to teach me skills that I will need when my vision progresses downhill. Since I am working with DARS and with my Vocational Rehabilitation Counselor, we had to identify a vocational goal. My original goal was to become a Deaf Education teacher however now it is to become a Vocational Rehabilitation Counselor myself. In order to do that, I have to complete my Master’s Degree.

The services they provide for me:

1. Assistive Technology
2. Orientation and Mobility Training
3. Home teaching, including Braille training
4. College Assistance

Assistive Technology:

Assistive technology is such an important part in the lives of individuals with disabilities. For individuals with a hearing loss, this could be a hearing aid or cochlear implant. For individuals with mobility impairments, this could be a grabber/reacher. For individuals with vision loss, this could be a cane, assistive technology on the computer, etc.

DARS sent me to Austin, TX for the technology evaluation. It was an absolutely incredible experience because I got to live in a facility for a night that was built for individuals with visual impairments. It was pretty fun!

They recommended to my DARS case manager that I get a CCTV (closed caption television) as well as an external monitor. They also recommended a small handheld cctv. They are all very cool advices. I find myself, right now, using the external monitor the most. I imagine I will be using the CCTV more in the future.

Assistive technology, especially for a geek like me, is very fun!

Orientation and Mobility Training:

Orientation and Mobility training is AMAZING. Originally, I started so that when my vision goes downhill even more, I will have a cane for travel. However, as I progressed through several trainings I learned that I can definitely use my cane skills at night time when I’m traveling. Travelling could mean walking from one person’s house to another, or taking an airplane, or anything in between. 🙂 Micha, my Orientation and Mobility Instructor, is great. She works with the Visionaries of Texas. We went to the mall and various streets and intersections. She made me get from Point A to Point B with a blindfold on and a cane. I learned so much. When I moved, somehow my cane disappeared and I now miss it quite a bit. I have ordered a new one. Micha and I didn’t finish our training because of my school schedule. We are going to work more together now that I’m back in Dallas/Denton.

Orientation and Mobility works with cane training, helping individuals with vision loss figure out public transit, as well as working with individuals who have guide dogs to successfully navigate/travel. It’s such a great service.
Home teaching/Braille:

This is a service which I haven’t used that much. The service is providing a home teacher to come out and help you learn to navigate your house and live well. They can teach you so many skills from cooking to Braille to laundry. All lessons are tailored of course to individuals with vision loss. She gave me some neat tools such as large playing cards, a high contrast cooking board, and a Braille book. She started teaching me how to use Braille. I hope I won’t need that for many years but it is cool to know it. We were going to work more on cooking, because I really didn’t feel the need to do it more. I may take it up later.
College Assistance:

Because my vocational goal is to become a VR counselor, I have to get my Master’s first. My current vocational goal is to get my Bachelor’s degree and then after I complete that it will be to get my Master’s. DARS helps me with college because it is required to reach my vocational goal of becoming a Rehab Counselor. They help me pay for various things such as textbooks, room and board, and tuition. It’s quite nice.

 

One last thing that I feel important to note is they do a sort of means-testing, but usually don’t require their consumers to pay much at all. I haven’t had to pay anything and it’s been a blessing. If you do pay anything, you would help pay for the assistive technology or something like that. You would never pay the counselors.

 

If you have any other questions about VR (Vocational Rehab) or DARS, please feel free to ask! 🙂

-Jess

Academic Accommodations


It really is great that schools, both K-12 and colleges, are now becoming more accomodating to individuals with disabilities and helping them get the most out of their education.

At TAG Magnet School, there are high standards to get in. Most of the individuals who had disabilities had it fairly well under control, from what I observed. Most of them didn’t have physical disabilities such as hearing or vision loss. There was one other student who did have some vision loss but I didn’t notice her using any accommodations. Currently, however, there is a student there who is completely blind. At that point, the only accommodations i really needed were to sit at the front of the classroom and have a lot of light. All of the teachers were very accommodating towards this and I was really appreciative. It helped that the class size was super small (like 7-15) so I could easily make everything work.

Now that I’m in college and class sizes are dramatically larger, things have become a little more difficult. This, compounded with the fact that my vision is getting worse, has presented me with several obstacles. Many of said obstacles I have overcome but some of them I’m still working on. In terms of strictly academic accommodations, I’m pretty set. I sit in the front of the classroom and sit where the glare won’t cause an issue. In most of my classes, the lighting is just fine. There is one class that the lighting is awful in and I can’t see anything except the screen. This is quite difficult for me. That is when I went to the Office of Disability Accomodations and they are working on getting the classroom changed. Another student, who is in a wheelchair, also has issues as this classroom is not wheelchair accessible.

Speaking of Office of Disability Accommodations, most colleges and universities will have an office that works with individuals with disabilities to make sure that the school and all teachers comply with the Americans with Disabilities Act. At both the University of Tulsa and the University of North Texas, both offices were extremely helpful. They usually meet with you to discuss your disability, your provide proof of your disability from a doctor’s office, and then they work with you to make reasonable accommodations that won’t give you an advantage over other students. The whole idea is just to level the playing field, not give you an advantage. On my accommodations letter, it specifies that I can use my computer in all classrooms to take notes on, I can take all of my tests on a computer, and I need to sit in the front with “optimal lighting.” These accommodations themselves help so much because I give the letter to each professor and the professors are required to help me.
I’ll discuss in a future blog what issues I’m still having on campus, but those aren’t related to academic accommodations. They are more traveling issues.

As always, feel free to leave any comments/concerns/questions. 🙂

-Jess

Driving?


Got my license six years ago. Number of times I have driven independently? None. Number of times my younger sister has driven independently? Hundreds.

After some time passed and I was not driving simply because I was busy, it became I was not driving out of fear of my own and my parents. There was a large period of time that my parents did not think it was safe for me to drive and this really upset me. Dad was worried that if I was in a wreck and the other insurance company found out I had RP, we would pretty much automatically be at fault. His logic makes sense but I knew I could drive. At the fine age of 22, I went to my low vision opthamaologist and he cleared me to drive. He will write a letter stating so. He said of course I will not be able to drive at night, but I knew that part all along. When my parents are driving though, I look at the road ahead, and more often than not, I will have thought it did not look bad for me to drive at least once.

I will be taking a remedial course this summer and hope to do some basic driving after that. That will provide me a little more independence and I really long for that.

I think it is important to also share with you my experience with my first driving school. At the age of 15, I started working on getting my license. This was one year or so after I was diagnosed with RP. We did not know too terribly much at the time and I was likely in some sort of denial. I went out with a male driver one evening to do one of the in car sessions and he was an absolutely jerk. Add on my problems with night vision and when my Dad picked me up I was in tears. I did a few more sessions with a female and they were not the best either. Time ran out and I had no motivation to finish the class. At 18, I took the same class somewhere else and passed with flying colors.

Before a teen with RP starts driving it is very important they know their individual functional limitations for their safety and everybody else’s.

Holiday Frustrations


Holidays are tough. I am around a lot of family all the time and while they know I have RP, and I tell them what makes life harder they still tend to do it. An example of this is moving things around. I put things in specific spots so I know I can find them later. However everybody has a different idea of where everything should go. I then spend so much time looking for them. Very annoying!

It’s also the time when I would like to just be able to go drive somewhere by myself or run to the store. Nope… Can’t happen.

This Christmas my family all has been curious about my vision loss. While I am generally pretty open about it, I think I am going through a phase of being annoyed with it so when people ask me, it sometimes gets to me.

Sorry about the negative blog. We have ups and downs in the journey of RP, and this just happens to be a down!

I am trying to write more. Sorry about the lack of posts.

-Jess

CNTF Study


I hope everybody is enjoying this blog so far, even though it just got off the ground. 🙂 I wanted to tell you all about a study that I have briefly referenced in a previous post.

At the Retina Foundation, 3 days after I turned 18 years old, I was implanted with a CNTF capsule in one of my eyes. It was a double-blind study so only the Doctor, Dr. Spencer, and Kirsten, the technician/clinical study coordinator were supposed to know which eye it was in. This didn’t ultimately end up being the case due to a funny story that I’ll tell you in a short bit, but for the most part it was kept quite secret.

Now, this may gross you out a bit. A man who was driving a motorcycle was an organ donor and passed away within the past few years surrounding my 18th birthday and the start of the study. He was found to have extra cells of this particular variety that could potentially help individuals with Retinitis Pigmentosa stabilize their vision so that it doesn’t progress. I decided that I definitely wanted to try it even though I had only been going to the Retina Foundation a few months. I have several other unrelated medical issues, so hospitals and surgeries were not very scary to me, although I still do like to avoid them when possible. 🙂

This is a picture of my eye, taken with special retinal photography, with the capsule in it. It will either look really cool to you or weird/gross you out completely. I’ve heard both quite often when showing this picture.

Taken with special retinal photography instruments at the Retina Foundation

I can’t seem to find a picture of myself right after implantation surgery but I found a picture of myself after explanation which I will further explain in a minute.

The eye had to stay covered for 24 hours after surgery in order to let it heal and start the repair process

Okay, so now let me explain more.

What is it?:
As mentioned above, it’s an implant that has cells from a fellow who passed away several years ago. This capsule inside of my eye releases the cells in intervals. The goal was to slow or halt the progression of Retinitis Pigmentosa. Currently, there is no cure for it however.
Implantation:
I had to be 18, as mentioned above, to get the implant. They wanted to already have everybody implanted by this time, however they fought to get me an extension. Three days after my 18th birthday, I was implanted with it into one of my eyes. I didn’t have a definite confirmation which eye it was in until two years later. The surgery really wasn’t bad, as Kirsten was there to help and talk me through the whole thing. I was also passed out for all the actual surgery. When I woke up, both eyes were completely covered. I would not be able to see for 24 hours. I also had a stitch in both eyes. This was to ensure that I truly didn’t know which eye it was in. The protection was to make sure that my eyes had the chance to start healing. The picture above is just of one eye, after explanation, however I had both eyes covered after implantation. I went home and just really relaxed for 24 hours. My boyfriend came over to hang out with me, help me check my email, read texts, etc and so forth. It wasn’t that bad, but by the end of the 24 hours I was really ready to see again. It was painful seeing again however because I had stitches in both eyes, they were really dry and itchy yet I couldn’t scratch them, and very sensitive to light. It was a little rough, and I remember it like it was yesterday. I went in to the doctor, 1 day, 1 week, 1 month, and then at various timed intervals after that to check up on how I was doing, as well as take research results.  The labs that they had to run drove me nuts and after 2 years of them, I really began to hate them. I think I’ll dedicate a whole post to those darn things. 🙂
Explanation:
2.5 years after I was implanted, the implant was removed. At the beginning of the study, they told us that it was mandatory the implant was removed after the two years, even if they discovered it was beneficial. However, when it came time for me to take the implant out, they were giving the clients an option. I chose to take it out, because I didn’t visibly see much difference and with it in I would be disqualified for all future studies pretty much until I got it out. The study was also completely free to me, including surgeries, so if I were to get it out later I would have to pay for the surgery myself. (Or my family would, rather). I got it out, and this time after the surgery I only had to get one eye patched. I was happy to know that it was indeed in my left eye after questioning it, and sort of knowing although I wasn’t supposed to, for 2 years.  I did the same with this, I visited the doctor 1 day, 1 week, 1 month up until 6 months after. I also chose to enroll in an exit study so that they could monitor how one does after the implant is removed. Really, I’m just about ready to try anything because even though I know it is likely coming and it will always be at the back of my mind, I really don’t want to become blind later. The implant was removed after 2.5 years instead of 2 years because I was away at college and I really couldn’t take the time off. They filed for another extension and it was granted. I got it out during my Spring Break. (Lovely vacations/celebrations huh?)

Pain Level:
The implantation and a complication a few days after were the most painful parts. After 24 hours, my eyes were itchy, painful, red, and light-sensitive. I also had to put these drops in them every 3 hours and I hate hate hate drops. This was an unpleasant experience because I made my Mom do it but I never can manage to hold open my eyes long enough for the medicine to get in there. By the end of the drops, my face is practically soaked. A few days after the surgery, my eyes were really bugging me. They were hurting and I really couldn’t figure out what was going on. We scheduled an emergency appointment at Texas Retina and they discovered that part of the stitch had come loose. They numbed (with drops) and then I see this big giant tool thing coming towards my eye. It was just a little bit intimidating. I had to continue to put drops in my eye, but after that I wanted to…. for like a day. 🙂 That sentiment didn’t last long.

Rules:
We of course had to be 18 years of age, agree to use contraception if sexually active, agree to all the other terms and conditions and make the clinical coordinators immediately aware of any change in medical condition. The reason we were required to use contraception is that they didn’t know if it would have any affect on the fetus and they didn’t want to risk it.

Funny Story:
So at the beginning, I really truly did not know which eye the implant was in. However, as it healed my left eye really hurt more than my right. I started to think that was a clue, oooh lala. Then one day I was having an appointment and a “Fellow” came in to evaluate my eyes and take a look before the doctor came in. He walked in and said,  “So we’re taking a look at the implant in your left eye, correct?” I didn’t want to make him feel bad so I confirmed it. I am not sure if he ever was made aware that he slipped that. I tried however to do all the tests accurately despite me knowing which eye it was in. There was always the chance that it really wasn’t in that eye.

Measuring Progress/Success?:
Along the way, the tested our vision with several devices. My most favorite was the electro test, or the contrast test. During the electro test, we had a contact hooked up to a sensor that went into our eye like a normal contact. Except protruding from this contact were little wood sticks that kept one’s eye open. I also had a wired patch on my forehead. Really bright fast lights were flashed in my eyes and they measured what my eye and brain saw and didn’t see. It was very interesting. During the contrast test, we are giving about 20+ different circles and each of them vary slightly in color. We had to rearrange these circles so that they were in order according to their color. It was a challenge for a few of them but apparently I did better than most. This was exciting, however I never really feared about losing my ability to differentiate various contrasts. My least favorite tool was the Visual Field test. I will show and tell you more in another blog but basically you had to sit up straight with your forehead against this bar and you were surrounded by this half circle. You had to stare right ahead at the center and press a button when you saw a light flash in your periphery. Each test was 20 minutes long and they had to run two on each eye. It was a long frustrating day of testing and now I hate to take those tests. Ultimately, it was determined that my RP and eye condition didn’t deteriorate or improve while the implant was in my eye. We don’t think it’s related, however it very well could be.

So that’s a lot of information to soak in but I just wanted to give you a little background on it. Please let me know if you want to ask anything. I promise it really won’t offend me.
Always,
Jess

Resources


One of the most valuable tools for me to cope with and adjust to the diagnosis of Retinitis Pigmentosa and the years to come were various resources, both online and in person.

The Retina Foundation
Locally, The Retina Foundation of the Southwest is amazing. Even if you aren’t local, but need help or advice I would strongly suggest to contact them. They can likely guide you where to turn for something locally. They also conduct clinical trials, one of which I have participated in, and are a very good knowledge base as well as support system.
http://www.retinafoundation.org/ At the Retina Foundation I personally see Dr. Birch and Kirsten, the assistant.

Texas Retina Associates
Texas Retina Associates is another great resources for the medical side of RP. They have amazing Dr’s. Dr. Spencer is with Texas Retina Associates and he is actually the doctor that performed the surgery on my eye for the clinical study which I will explain later.
http://www.texasretina.com/default.aspx

The Retinitis Pigmentosa Community on Facebook
I’m an avid Facebook user, so having an online support group and interactive forum very easy to access has been wonderful. On the Retinitis Pigmentosa Community FB page, there are people from all walks of life who just want to vent, share their experiences, ask questions about experiences or others, or just know that there are others out there that are experiencing similar issues. For me, it’s reassuring to see some people who are middle-aged who do still have their vision, as I hope to still have it by that time as well. I love technology so there are lots of posts about Ipads, and other products and how visually impaired users use them. Its a very fascinating site and I would encourage you to check it out if you have a Facebook.
http://www.facebook.com/TheRetinitisPigmentosaCommunity

Foundation Fighting Blindness
This is a wonderful organization which will provide you tons of information on RP itself as well as living with blindness. They can help you find resources and are just another great resource out there, free of charge.

Vocational Rehabilitation Program or Department of Assistive and Rehabilitation Services
The name of the program depends on what state you are in. In Texas, it’s called DARS (Department of Assistive and Rehabilitation Services). This is a program which helps individuals either get through elementary-high school or get gainfully employed. Since many careers require a degree nowadays, this often involves helping get the consumer through college. I will go into this in more detail in another post as well.

Again, I would avoid a lot of the sites that just give purely medical knowledge. Most of what they say is correct however each person who lives with Retinitis Pigmentosa should not be lumped into a statistic about how many RP individuals lose their sight by such and such age. Everybody progresses at their own rate and a lot of times these statistics do more harm than good, I’ve found.

There’s so much information I want to tell you all about, and I think it will be nice for others to have one place to get a lot of this information. I just have to break it into posts and unfortunately my schedule hasn’t allowed me to get online very often and sit down to write a post.

If you have any other resources that you have found helpful and would like to share, I highly encourage you to do so. At the same time, if you have any additional questions or comments, please feel free to comment and I’ll get back to you as soon as possible.

Have a great weekend!
-Jess

What is Retinitis Pigmentosa?


Dear Reader,

I’m very excited to start this blog. If you haven’t done so already, please click “About the Author” in the upper right hand corner of the screen to learn more about me, and my purpose for this blog.

If you’re unfamiliar with what Retinitis Pigmentosa is, especially if you have a loved one that was diagnosed with it, don’t immediately go to Wikipedia. The first thing it will tell you is it “leads to incurable blindness,” which isn’t always the case. Let me tell you what it really is, from someone who experiences it.

It is an eye disorder or disease which is also progressive. An individual who has RP can lose their vision at a slow rate or a fast rate, or somewhere in between. It is really different for every person. Some never become legally blind, whereas some become blind in their childhood. I have been fortunate to still have my sight, and I am about to finish my undergraduate degree.

In medical terminology, it is a “progressive retinal dystrophy,” and is an inherited disorder. There are abnormalities in your photoreceptors (aka the rods and cones in your retina) which cause the progressive visual loss. I love photography and love representing what is happening not only through text, but also through pictures. The picture below is a picture of what my retina looks like. This is only one part of my eye. The black dots you see around the border are the abnormalities mentioned above. They are “pigments” hence the latter part of the name “pigmentosa.” Basically, where the dots are, I can’t see. As the disease progresses the dots increase in number and density, which leads to the visual loss.

This is one part of my eye, where you can see the abnormalities.

There are two main ways RP affects ones vision. Usually first to occur, is night blindess. The term is pretty self-explanatory. You pretty much can’t see anything in the dark, except for very well lit areas. This makes travel, by any means, difficult in any dimly lit area, regardless of day or night.

Next to go is your peripheral vision. For me personally, this is what has made adjustment and coping with RP a difficult journey. I will explain more in future blogs. As I mentioned above, as the pigments become more dense and greater in number, your vision decreases. These dots close in around the border of your eye, making a tunnel.. (“tunnel vision.”) This can also lead to total blindness if the disease progresses to that point.

My central vision, with glasses, is 20/25. It is actually quite remarkable, and I am very glad for that. I use my great central vision to help make up for the lack of peripheral or night vision.

Now that you know a little more about Retinitis Pigmentosa, I hope you enjoy my future blog posts. If you have any questions, comments, concerns.. or would like me to address a specific topic, please let me know! You can leave an anonymous comment below.

Yours,
Jess