Retinitis Pigmentosa Support Group

Hi Anna : ) I'm in very similar circumstances to you as I was just diagnosed last fall and have about 8 degrees of perephreal vision left. My central has been holding up pretty well but as you know, we don't know what tomorrow holds. I started cane training with our institute for the blind and a computer course is coming up. I had my license pulled as soon as they saw my test results. Do you use a cane? If not, that would be my first step to independence. I'm sure you're aware that isolation is really not healthy. Do you have friends to call on, have lunch with or go with you shopping etc.? I have church and 2 very dear friends as well as a husband so I'm trying to get out on foot or with a ride as frequently as possible for the exercise as well as the companionship. I know how difficult your circumstances are. My heart goes out to you. If I can do anything to help, please don't hesitate to ask. : )

By the way, are you in Canada or the U.S.? : )

doctorh! Thanks so much for replying. By the way I was really interested in your thoughts when I read one of your responses yesterday, like healthy living etc. I have around 10 degrees left and mine happened very suddenly, like one second I could see well perephreally and the next I had 90% loss. To answer, yes I do have friends, family, church etc and they have all been wonderful. On the other side of that coin, none of them have experiential knowledge, so no one can help me with tools for getting around. I would like as much as possible to retain some at least sense of independent living. Yesterday I started the connecting process and yes am trying to look into getting and being trained with a cane. Just started to get off dead center yesterday. And by the way I live in Kingwood Texas. Thanks for caring and replying.

By the way, was yours sudden? So very sorry about your license being pulled, what kind of doctor are ? Are you in US or Canada? Do you attend any kind of support group? And I so agree that Isolation is totally unhealthy. Mine just started recently and it is one of the main reasons I decided to ask for help. I like you, have been and was a healthy and very active 66+ year old. A retired Interior Decorator and most recently had been making some really beautiful jewelry. Even that though has gotten really stressful, as opposed to theraputic which it was, due to my eyes tiring so easily. Do yours? Also seeing at night is right next to impossible, I find I need tons of light to see. Well thanks again for your input and I look forward to hearing from you again. Anna

Sorry it took me so long to reply, Anna, yesterday got busy and I was out all afternoon. Where I live, I'm able to walk to town to shop but it's a 40 minute walk there...downhill so the walk home is all uphill and I usually try to time things to meet my husband after work and ride home with him. In the winter, it's very slippery so I'm much more restricted in walking that far downhill. I get out as much as possible before it snows too much.

I live in British Columbia, Canada BUT interestingly enough, I'm originally from Houston, Texas! I have family in Dallas, Port Arthur and Louisianna. My family moved to Canada in my late teens. Small world huh??

I was diagnosed last fall with RP after 3 changes in my prescription lenses in about 4 months. I kept having trouble seeing after a very brief time and finally they did a visual field test which showed that my visual field had diminished dramatically in one year. After some very specific testing in a few larger hospitals out of town, they realized that my retinas did not respond to darkness or light..thus the realization that I had rod/cone dystrophy. RP is a form of that. It seemed as though mine was sudden but I can also say that I always struggled a certain amount with driving when it came to busy intersections and congestion. Now I assume that was because it was very hard for me to monitor all directions. I now have some days that I really don't see well all day but it comes and goes. I don't use the cane all the time but I'm finding that when I walk out side and it's really bright that I can't pick my head up and the cane is coming in handy in that regard for sure. I'm very blinded by bright light and darkness and transitioning from one to the other is downright painful. My eyes do tire very easily some days but not all. It depends on the lighting I've been in and what I was doing.

One thing I would highly recommend is yellow tint on your lenses. If you don't wear prescription lenses, I would still start wearing yellow tinted lenses. They can be bought in any eye glass dispensary or put in any existing frames you might have. They have made a world of difference for me, especially on the computer, watching tv, reading or going out at night. They cut through alot of glare and really create better contrast. I did some research and asked my optometrist about it. They put a yellow tint on my lenses and a very dark transition coating on top so when I go out my glasses go dark in bright weather too. I have been seeing a homeopath since January of this year since the doctors offered no help for me and she has been a blessing. She is working with me to keep all of me even healthier than I have been and my overall health has steadily improved. Also, her wonderfully positive approach to health has really helped me to understand how much our attitudes and approach to coping effect our vision. She makes no promises about my vision because noone can but that's ok. We work hard on health for my whole body and that has to help my eyes be healthy. Also, I exercise (walk) regularly and try to be cautious about my posture (I have always had rather lazy posture) as the flow of blood and oxygen to your head from your spinal column can be compromised by poor posture and your eyes are very sensitive to loss of oxygen. I take a few supplements and have cut certain things out of my diet. Not because of my eyes specifically but because it helps to keep my whole body much cleaner and healthier. I try to surround myself with positive people and love the Lord.

I have a very dear friend who makes jewelry and she loves it. So do I..she is always giving me pieces she's created! I'm sorry to hear that it's become so difficult for you. You must have magnifiers that you can work under. Are they of any help? They come with lights in them. It is very intricate work for sure.

I hope you get connected with the right agencies and get a cane. I think you'll be glad you did. How is your central vision? What are your biggest struggles in getting around? I hope you are finding some support. I don't know anyone else with RP where I live and my doctor had not ever treated anyone before me (family doctor..not eye doctor)so I don't belong to any support groups but I am a member of the Canadian National Institute for the Blind and they have been amazing! Thier office is 3 hours from me but they travel so I get alot of support by phone from them too. Keep posting and if you want, we could email too. Have a great day!

Hello Arwilson, I certainly understand your frustrations in public places. I still have 20 degrees as far as my lest exam about a year ago.

I live alone and like DrH I can walk to the store, beach and restaurants. I also have a bus stop less than a block away. Thankfully it's flat and warm here in FLA, I also like that it stays light a little longer here this time of year. I rarely go anywhere after dark unless someone is with me.

I try to go shopping early before it gets crowded. I haven't used a shopping cart in a few years. I just carry the small handcart. I feel quite a bit of anxiety when in any store.

I have used the yellow tint glasses at night, they really brighten things up, but I would feel funny in public.....I have two pair of NOIR sunglasses, one grey and one amber. Mine are the non-fit over style and look kinda like oakley's. I have to wear my contacts to wear them. I find the amber works well on cloudy days and the darker grey for bright days. They seem to really help with contrast, here's a link: http://www.independentliving.com/

Mike

Morming Everyone!! Thank you ALL for your support and caring since I got on this site. Being in contact with others who are experiencing the same stuff and conditions has been amazingly helpful. I am meeting with a Division for the Legally Blind to start training etc. with a Cane. Never thought I'd get here, but I'm here and am finally knowing in my heart that its OK to admit that I'm legally blind and now what!!! They will also be finding ways to help me get my jewelry business going, that way there are more services available for me. So I'm really excited about getting on with independent and productive life. I'm grateful for those that this condition has brought into my life and I look forward to forming new friendships. Again Thank You ALL and look forward to hearing from any or all of you.. Buela (Anna)

Dear Anna -
While I don't understand the "degrees" measurements, as DoctorH is explaining, I do know about turning those corners. I was trained on a seeing eye cane - despite what I consider my very good sight - for the future. I realize my limitations driving at night - let alone sometimes not seeing things I drop in daylight.

But this week, I reached a turning point. I've noticed that in walking outdoors by night, I have difficulty finding ends of sidewalk, etc. and finally decided to use seeing eye cane at night. I don't want anyone to know (while everyone tells me I shouldn't care) but I'm so concerned not only about the stigma - but of someone thinking I'm more sight-impaired than I currently am when they see that cane. However, it was a good thing to have that cane. Just want you to know I understand those turning point moments.

Hi MamasChild1! First off, thank you for your message. I am just going to be starting my seeing eye cane training in the next week or two. And I so totally agree that training while we have vision is really important, as much because as changes come, if they come we are already prepared and the transition isn't as tough or huge. WOW, I'm impressed that you drive at all to say nothing of night driving. :-) You go girlfriend!!! I have 90% peripheral loss in both eyes, and have not been able to drive for over 1 1/2 years. It was/has been a tough, tough, tough thing to give up. Really huge loss in independence. But noone including me would want me on the streets! What percentage loss do you have and when were you diagnosed if you don't mind sharing? This condition is really tough, cuz we don't look like we can't see around us, we just can't and others don't know that.

I totally understand the night and walking outdoors and even in dimly lit restaurants or homes or movie theaters or etc, etc, etc. Kuddos to you for deciding to use your cane. But you know what Mamas Child, having RP and being legally blind is not a stigma. It is a condition that we are dealing with, it isn't us. I believe the cane is an especially great thing for not running into children, dogs, walls and people too :-), And it helps others to visually understand that our vision is impaired and then to be able to give us needed space. I believe that the enemy of our souls would have us believe that it is a stigma, but the Lord of our hearts and lives wants us to be able to function and live full lives. I would love to share more with you if you are interested. We could become friends and share on that level too if you would like. Let me know. I'm praying for you and your peace to come in great measure. Take care, Anna