Coping with Cone Rod Dystrophy, I Feel So Alone!

Hi everyone,
I've known since my mid-20's that I inherited cone-rod dystrophy from my grandfather. It's only recently now (I'm 42) that my daily life has begun to be affected. And the hardest thing is that no one I know can relate.

In short, here's my experience: my central vision is degrading. The optometrist can still correct to 20/30 or 20/40, but my visual fields are screwy. I can't really make out people's faces. I love to read, but reading print is becoming frustrating. I can get pounding headaches from reading. Also, I'm an avid violinist, love to play chamber music, but my ability to sight read music is going, which I find very sad. I gave up driving several years ago for other reasons. I'm fortunate to live an urban area with great public transport.

The future looks bleak. I know that things are going to get worse. I really worry about reading, and I'm starting to feel really awkward interacting with people when I can't make out their facial expressions.

While this runs in my family, really no close relatives have CRD. I have a great uncle on the other side of the country who I barely know with it. My immediate family freaks out when I try to bring it up. Well, my mom does. Dad doesn't really emote at all. My friends are full of pity, sometimes grief. And they really don't get what I'm going through. I have a therapist, too, who is great, but this is outside his experience.

So I'm feeling very alone. I feel like the resources around are for people with much more vision loss than I have currently. There is no one I can talk to about the changes in my day-to-day life (seemingly).

I'm wondering if there is anyone else out there feeling similarly.

Thank you,
Peter

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Re: Coping with Cone Rod Dystrophy, I Feel So Alone!



I can relate to your frustrations. At 34, I was diagnosed with myopic macular degeneration less than a month ago. I am still in shock. I cant see centrally out of my left eye and straight objects out of my right eye are "wiggly". I went through undergrad and professional school and am finally becoming established in my field and now this. I don't know anyone with a condition like this and feel so alone and the future frightens me. I am very independent and drive almost everywhere. We are all here for you.


Re: Coping with Cone Rod Dystrophy, I Feel So Alone!



Hi Lafay,
You are certainly dealing with incredible challenges, a whole rebuild of your life style and the difficulties of accepting vision loss. Plese never quit life - it does get better, honestly, it is a process however, a journey and we are here to help you over the frustrating hurdles on the path.
I am one of the peers with a different eye condition and my heart goes out to you to strengthen your spirit as you take the first steps to rebuild your life.
Many great articles can be found on VisionAware so do browse and be encouraged to know, where there is a will - you will always find the way.
Take care, please stay in touch, Maribel


Re: Coping with Cone Rod Dystrophy, I Feel So Alone!



Peter and Audrey,

Hi I just wanted to say thank you to you both! Your posts may have saved my sanity and life. I've been struggling with a few health issues and one of them is that my Fuch's Dystrophy seems to have improved and worsened. I have had double corneal transplants. I lived in denial as a photographer, thinking I was going to conquer the disease....for 6 years I have been similar to a person who is illiterate but creates devices to "pass" as literate. Partially that was because my numbers as Peter said were improving while all the time my field of vision has been disintegrating. I actually have to wrap my head around this now (and as a completely visually oriented person, no musical talent here) I feel devastated, lost and deeply sad. I have dyslexia and noted it was getting so much worse recently and then the first incapacitating headache came on and it just stopped me in my tracks. I have been through a lot, I was totaled while sitting at a Stop sign in 2003 then 3 years later run over by a woman texting on her phone while driving. Like "Humpty Dumpty" I was put back together again and so I've bounced back from a lot but this is coming at a terrible time and it's left me in such despair that I have felt like quitting life altogether (I was facing a shoulder surgery, now on hold due to a housing crisis)because I am overwhelmed at the tender age of 56. Your two posts gave me hope. Peter I think I can safely say I feel like I know your confusion, frustration, sadness and anger. I loved my Corneal Doctor put all my faith in him, now i feel very frustrated and a bit angry as well. I had a very rudimentary understanding of this illness. My Doctor kept erring on the side of optimism, which I took like a kite and ran with, I wanted so to believe the outcome would be different. Now Audrey I have to get to a place of acceptance and "put my house in order as they say" and read the book you recommended, take the course and do so much more, but at least now I can be proactive. My new caseworker is really nice and I think she'll make a difference when it comes to me getting the services I require but it's as you say Peter, it's hard for people outside the experience to get it. I wouldn't wish what I'm dealing with on anyone but it would be nice to be able to chat with someone on what it's like and hopefully soon that will happen as well. Thank you both for getting the ball rolling.


Re: Coping with Cone Rod Dystrophy, I Feel So Alone!



Hi Peter- My name is Audrey and I have been diagnosed with Retinitis Pigmentosa and at one time it was thought to be Cone-Rod Dystrophy which is a sub category of RP. I was diagnosed at age 25. I am now 55 and of course my vision loss has progressed. Yes, there have been some very frustrating, scary and challenging times while I was losing my vision. I am now legally blind, use a guide dog and have retired from my career in nursing.
While you are at a different point with your vision, I can certainly relate to the changes that are happening and how you are feeling about them. I would like to make a few suggestions to you based on what I have learned along the way.

It is important to grieve the losses all along the way. When one has a progressive eye disease, the emotional adjustment can be a long drawn out affair because there are constantly new losses and new adjustments you will need to make. Your therapist can help with grief and loss issues. There is a course and book by Dean and Naomi Tuttle called "Self Esteem and Adjusting with Vision Loss" which is an industry standard to help clients and professional alike, to understand the process. You could take this self-paced online, short course from Hadley School for the Blind to help you work through these issues. It was instrumental in my life and strengthened and prepared me for things to come.

Next, I think it is important to find Low Vision Services or Vision Rehabilitation Services in your area. They can train you to use assistive technologies to help you continue to read in alternative ways, do daily living tasks, and how to get around safely which is called Orientation and Mobility. Even though you do not qualify for some things based on your acuity, you may qualify on the basis of field loss and other functional criteria. It would be very helpful to have a "Low Vision Evaluation" so you can learn about lighting, magnification and other strategies that can help you read and do the things you want to do. You will be amazed and encouraged when you begin to realize all there is out there to assist you...even to still read sheet music! You can use the VisionAware Directory of Services to explore what is available in your state/area: http://www.visionaware.org/directory.aspx?action=b... Narrow your search by putting in your state.

Lastly, I recommend using the directory of services to find a support group for the visually impaired where you can meet others who will understand what you are going through since they are living it. Group members encourage each other and are well informed on tips, tricks, and resources. There are even online support groups on FB and other listservs-search Retinitis Pigmentosa, RP, Cone-Rod Dystrophy in FB. I belong to several and they do offer lots of support and info.

I encourage you to peruse VisionAware for helpful info and strategies on lighting, magnification, techniques for reading etc. Dig around under the Everyday Living Section and Emotional Support Section to find a wealth of helpful info. It is up to you to educate yourself on "life with low vision" and take control of your life. You have to face things in a practical way and learn to think differently about vision loss. It does NOT have to mean the end of your life! We all have to commit to learning to do things in new ways and to maintain our independence. You CAN still have a full and meaningful life...you can continue to read and play your violin...just reach out for the support and training. I was able to work as a visually impaired nurse for 30 yrs...I have many hobbies and I am an avid reader using the Talking Books program for the visually Impaired. I hike, cross country ski, do yoga, crochet and do a variety of crafts. I love my life with my guide dog Sophie... you too can choose the life you want to live!

Check out my personal blog about living with vision loss at www.seeingpossibilities.com Also check out other personal stories of people living with vision loss on VisionAware at: http://www.visionaware.org/info/emotional-support/...

all the best to you, Audrey
P.S. If you would like to correspond further, feel free to write me at: amdemmitt@gmail.com


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