Living with Retinitis Pigmentosa or any other low vision condition is not easy. Your life is a constant struggle of adjusting to new changes. But isn’t that what life is? You wake up knowing nothing of what’s going to happen that day. Still, does one refuse to go about their day? Never.
What ever low vision condition you may have, there are things you can do to live independently, enjoy the little and great things life throws at you and have a good chance at a normal life.
Don’t hesitate in asking for help
The first step in dealing with retinitis pigmentosa is accepting you have a disability. A lot of people go through a phase of denial, which can also plunge them in a depressive state. But let me stop you right there. This first step in accepting your condition will be very hard. It will take everything within you to convince yourself but once you do, you will not only make things a lot easier for yourself, but for the people around you. Once you have taken this step of accepting this disability, do not hesitate in asking for help. You have to realize that you need to rely on something or someone in order to be independent again.
If you don’t, you will escalate your more problems and end up worsening your condition.
You see, when we are first struck by something unfortunate, we imagine scenarios that are extreme and negative. But when we have passed that time, we realize a lot of the bad things didn’t really happen and for the ones that did, there were workarounds.
So consider asking for help at the right time and you will be able to fight this disease with more energy, experience positive results and a better life.
Get therapy to deal with the disease emotionally
Once you decide on getting help, there can be a lot of options. Other than some exceptions, you will find the people around you very helpful as well. There are countless low vision aids and other devices to help with the physical problems. But being diagnosed with retinitis pigmentosa, there is a huge toll on the emotional health.
Even when you decide on accepting your condition, learning to adjust and adapt to the low vision conditions can be a challenge. It will be a great idea to get therapy. Just like any other difficult experience in life, there are dedicated therapists and support groups that help aid in smoothly transitioning through the stages of retinitis pigmentosa.
You will see a big change and find new and positive energy in yourself in fighting with this disease. As you might have heard, a healthy mind hosts a healthy body and it’s true for every condition.
Try different low vision aids
Having retinitis pigmentosa is an individual experience. It may differ for everyone. For some people, the onset of symptoms may start at an earlier age while in some cases the disease may progress at a very slow rate. Really, there is no rule of thumb for dealing with retinitis pigmentosa.
Just like that, there is no one ‘best low vision aid’ for retinitis pigmentosa. If you don’t feel comfortable with one, try a different aid. There is a lot of new research and breakthroughs on retinitis pigmentosa glasses, eye wear, canes and what not. Do not hesitate in trying different set of solutions. Of course, these things are pricy. Go for free trials first and then decide on your product.
Get proper and regular check ups
Anyone with this disease knows the importance of getting regular checkups. I still find this important to stress that do not miss your appointments. A lot of people develop some form of hesitance and resistance towards visiting their eye doctors until absolutely necessary. But let me tell you, such behavior could put you at a risk of increasing your severity.
As I mentioned earlier as well, getting help at the right time prevents a lot of uncalled for and unpleasant experiences.
With this disease, your eye health changes without raising any flags.
If you visit the doctor with regular follow ups, you will have a better track of your progression and be able to take more informed decisions.
Another great thing you can do is learn Braille. With retinitis pigmentosa, the disease might progress at different rates, but it does cause blindness at some point. It is better you learn Braille at an earlier stage, regardless of the fact whether you need to or not, at that point. It will immensely help you in the future.
Keep in touch with your low vision community
Staying connected with your low vision community. Lear how other people with the same disease are coping with it and it will not only help you stay motivated and positive but it will also give you the chance to help other people. And trust me, there is no greater feeling then helping other people. Not only that, it will also restores a sense of belonging and purpose.
So don’t shy away, share story with other people, you never know. You might tell them something they were looking for all along.
Exercise – Staying healthy is never out of the picture
Just like every part of your body, there are exercises for eyes and people with low vision conditions. Having a generally healthy routine helps with everything, be it retinitis pigmentosa or lowering your blood sugar levels. You can follow different exercise plans, diet plans and many more things to stay healthy and active. Having retinitis pigmentosa does not stop you from enjoying life. It just means you will need more adjustments than other people.
Here is a link to some exercises for retinitis pigmentosa.
Educate the community – be a teacher
You will be surprised by the lack of awareness people have regarding the problems, prognosis and conditions of retinitis pigmentosa. Educating your community will come with challenges but with fruitful results. You can also do that by becoming a teacher in some blind program. Share the skills you learned in coping with your condition. Help someone else learn dealing with a similar situation. Do not hide your condition with the people around you. It helps no one, not you, not the people around you. If you do this, you will be shooting three birds with one stone.
You will be raising awareness about retinitis pigmentosa, educating people in how to treat people with this disease and, in turn, eradicating the myths and misconceptions.
You will be directly helping the low vision community in better arming themselves with tools and skills to fight this condition.
You will be helping yourself grow and evolve with a positive out take on life.
Everything will add to a list of new experiences you will create. Some will be good, some might not be. But the initial idea you had, of living a life with retinitis pigmentosa will seem so meaningless and silly.
Increase your intake of Vitamin A
Studies show that increasing intake of Vitamin A can slow down the progress of this disease. Before you start this treatment for retinitis pigmentosa, consult with your doctor first. If the doctor gives you the go ahead, you could possibly slow down the severity of retinitis pigmentosa by increasing your intake of Vitamin A. You can try vitamin supplements or a healthier and safer option would be eating food rich in Vitamin A.
Readjust your living environment
Lastly, but definitely the most important thing. Readjust your environment where you live. How can you do that?
Here is a list of things you can do to make your place more comfortable.
- Curtains and Dark areas – Adjusting with different light
During bright days, keep the curtains closed or assign a dark area in your house for dealing with bright light. Install heavier curtains to block the sunlight. You will feel a huge difference.
- For dark times, use different lighting settings and options
You can install Led lights on stairs or other sharp turns or openings. That can guide you in the dark and they will be more helpful if they are movement sensitive.
- Use sliding doors
Instead of using normal doors, that open and close use sliding doors. And that too with door pockets instead of door handles. You will find those a lot easier to use than door knobs, which most people with this disease have to scribble at the door to find.
- Clear walkways from room to room
Keep walkways clear, especially the ones connecting different rooms. Get rid of extra clutter around the house, so there are less chances of bumping into things.
- Use colored pages to red better
Since retinitis pigmentosa is more common in children of different ages. Reading is one of the many challenges, both the parents and the affected child have to face. It might differ for everyone, but since RP is a light sensitive condition, you might find it more helpful to use colored pages instead of normal white pages to read and write. You can circle through different colors and see what suits you better, but yellow and pink pages normally help with reading.
As rare as pigmentosa retinitis is as a disease, there are a lot of assistive technologies out there that might help you lead an enjoyable and independent life. Don’t believe me? Watch some of the stories of these people with various low vision eye problems.