Living with Retinitis Pigmentosa: Strategies and Support -

Retinitis Pigmentosa (RP) is often hard to cope with given there is no dedicated treatment option that can cure the condition. Without medical support it leads to a gradual decline of your night and peripheral vision leading to legal or even complete blindness for some patients. Given patients are diagnosed with the condition early in life, most of them have to live through their entire life with RP.

So, to help you cope with the difficulties that arise from living with RP, here are strategies and support resources that can help you learn to cope with the condition better. Before you get into it, please note that help is available at all times. Simply reach out to us at Sanjeevan for perfect eyesight and we can offer additional resources to support you through your journey.

Adapting to Vision Loss

In patients with RP vision loss starts early but it is not noticeable at first. The early symptoms of RP include sensitivity to bright light and difficulty seeing the vibrancy in colours. Having trouble with your night vision is a part of the symptoms too and all this combined slowly increases and impacts your overall vision and ability to see. At first these symptoms are very anxiety inducing and can be downright scary for the person going through them.

However, once the initial shock subsides, it is important to understand that it is not the end. Vision loss in patients with RP takes time and with proper medical intervention you can even slow down the progression of vision loss. It is possible to slow down the progression to the point where you are able to live through your life without ever losing your entire field of vision.

So, if you are going through the symptoms of RP or have been diagnosed with it, feel free to get in touch with us at Sanjeevan for perfect eyesight. Our vision therapy and other non-invasive visual therapy options are currently one of the only treatment courses in India that can help you manage your RP and protect your vision against further degradation.

With that being said let’s learn more about adapting to vision loss. There are several ways you can adapt to vision loss. The options involve mechanical solutions and some medical solutions to help you see better. It is important to note that these solutions are mainly aimed at helping you see better based on the current ability to see with your eyes. They can’t treat your condition per se. With that being said, let’s take a look at the various solutions available that can help you adapt to vision loss.

Prescription Reading Glasses: The easiest way for you to help yourself see better is using prescription reading glasses. These glasses can help you magnify the world around you and help you read and see things more clearly without you having to alter the world around you in any way.
Magnifiers: If you are not interested in getting reading glasses you can always go for physical or electronic magnifiers. These tools are easier to use compared to reading glasses and they can adjust the level of magnification based on your requirement if you are using the electronic models. Just like glasses they can also help you read and see things clearly.

Adaptive Technology: Alongside electronic magnifiers there are other computer technologies that can help you cope with vision loss. Technologies like screen readers or text to speech converters can help you interact with the digital world without you having to strain your eyes. These technologies are now integrated into most popular operating systems and can help you use digital devices normally without much problems. They also work on mobile devices.

Better Lighting: If your rooms are illuminated properly or if you are using special high contrast lights in your room, it can help you see better even with fleeting vision. Combined with the other solutions, this can help you make your home easily visible to your eyes without having to make any significant changes.

Vision Therapy & Training: This is one of the most important solutions for adapting to vision loss. With vision therapy and training you can train your brain to go through life normally without being dependent on others. It involves using the other solutions alongside vision therapy that can reduce the speed at which your vision degrades. Vision therapy and training is available at Sanjeevan for perfect eyesight. It can be a holistic solution that will help you adapt to your current level of eyesight and make attempts to stop further degradation.

Assistive Devices and Technologies

For patients having RP, degradation of the central vision is one of the last parts of your vision to be affected. Generally the degradation starts with your peripheral vision and gradually affects your ability to see colours. Based on the level of your visual degradation there are several assistive devices and technologies that can help you see better.

Since blindness from RP is an advanced scenario most patients if the condition is diagnosed at an early stage can use these assistive devices to see clearly. They can help patients live normally without needing to depend on others. So, let’s take a look at the different assistive devices and technologies that are best suited for people having vision problems from RP.

Coloured Filters/Lenses: RP affects your ability to see colours so using coloured lenses can help you improve the contrast in your vision and see clearly. These lenses also help you see colours better, helping you live as normally as possible even with RP.
Audiobooks: For people with visual impairment of any kind, audiobooks and corresponding audio based entertainment options provide much needed relief. Audiobooks, text to speech, and screen reader technologies help patients interact normally with entertainment and digital devices around them. These technologies allow them to stay up-to-date and not miss out on the world around them.

Canes: White canes can help people with visual impairment interact with their surroundings and avoid stumbling. For patients with RP, these canes are only required when the condition has started affecting their central vision. They are valuable certainly but patients with RP in general cases shouldn’t need them unless they are legally or totally blind.

Orientation and Mobility Training

Mobility training is also an important part of adapting to vision loss. It helps patients that have considerable vision loss be independent and be able to move around freely. Mobility training and orientation devices are easily available nowadays. There are also a range of technologies that are aimed at helping people with visual impairment with various organisations building devices dedicated to helping them be independent. Overall, these orientation devices allow the patients to interact with their environment and check for obstacles on their path.

They also help people make up for the lost vision by using audio descriptions and GPS directions for their surroundings. Patients with RP are not born blind, so they know what it is like to see the world around them. This makes it that much harder to adapt and cope with fleeting vision as you are ageing.

So, it is crucial for patients to get vision therapy as early as possible and opt for these orientation and mobility training devices if they help them cope with their symptoms better. But what are these orientation and mobility devices? Let’s find out.

Service/Guide Dogs: Guide dogs are a common companion for people with visual impairment. These dogs are specially trained to be able to assist people with vision problems. They are also allowed in most places even where dogs are not allowed like on planes and in restaurants. They are calm and not aggressive at all, so there’s nothing you need to worry about even if you are afraid of dogs. Guide dogs are arguably one of the best mobility and orientation solutions since they also become your partner and friend along the way.
Mobility Aids: Mobility scooters are a great way for people with visual impairment to get around. As the name suggests these scooters are rideable and can be used on sidewalks. Patients with visual impairment can use them to go around by themselves. These scooters also have technology in them that alerts the driver about obstacles up to almost 10 feet ahead of them. However, it is recommended that patients with complete visual impairment not use scooters. It is better for them to use other mobility aids like canes or service animals.

GPS Devices: GPS devices can help patients too as they make the user aware of upcoming obstructions or traffic. These devices are often also used in combination to service animals and canes. They can be very useful in helping patients navigate the outside world. Do note that these canes and GPS devices are best suited for areas where GPS signals and the area mapping is up to the mark. For areas where there may be connectivity issues or places where the areas are not best mapped on GPS, it may be difficult to find your way there using these devices. That’s why it is always recommended that patients use these devices in conjunction with other mobility aids and service animals to keep themselves safe at all times.

Now that you know about assistive technologies and mobility training to help you cope with vision loss, it is important to look at environmental modifications too. These changes can help you adapt to your known environment once again without having to depend on technology or others. Additionally, we will also be looking at emotional aspects of coping with this change.

Environmental Modifications for Accessibility

It is possible to live life independently even with vision loss. There are assistance aids available readily nowadays that can help you interact with your environment and even see clearly in some cases. For patients who have lost their central vision completely or at least to the definition of being legally blind, there are still accessibility options that can help you be independent.

While accessibility tools and technologies are a great opportunity for you to be independent when you are interacting with the world outside. At home, you can make life easier with environmental modifications to fit your needs. What are these modifications and how can they help you live an easier life? Let’s find out.

Make Life at Home Easier for You: Whenever you get the chance, you should opt to use technology to your benefit, especially when you have the chance. Using an electric razor, having reading or prescription glasses at your disposal at all times, using a chain, getting food that doesn’t require serious cooking, using the microwave instead of the stove. These are just some of the options on how you can go for the easier option to make your life a bit simpler for yourself. This will also help you cope with your condition easier. Just remember to use your assistance devices and mobility training whenever necessary.
Declutter Your House: If you have rugs that can move, tape them to the floor. If your floor is waxed, don’t do it. Instead, try making it coarse so your feet don’t slip on it. If you have a lot of furniture in your house, get rid of some to make more walking space indoors. Or you can put some type of stickers or colours on them so that you can easily notice them when you are walking around. Also, do the same for any hanging wires around the house. Try to tape them to the wall or at least keep them away from where you are walking. These practices help make your home a lot safer for you to live.
Focus on Organising Your House: Get tools that help you keep things very neatly in separate compartments. Get organisers for your closet, for your workspace, for your dining and kitchen area. This way, you will always know where something is, and you don’t have to hunt for them. Plus, it will help you create a habit of keeping and storing things in the same place every time, which will be especially helpful to make you independent inside your house. For things you can compartmentalise, mark them or write what they are on them so that they are easily findable when you are looking for them. This especially applies to food items and toiletries.
Change The Lighting Indoors: Lighting is an important aspect of helping you adapt to your home better with vision problems, and there are a few ways to achieve it. First would be to have adequate lighting in all areas of your house where you will walk around. Add sufficient lights at the floor level so that you can always check for obstacles along the way. You can find motion activated lights so it will be easier for you to save energy with those too.

Additionally, you should also arrange your lighting in a way that it focuses on what you are doing rather than on your eyes. So, instead of having large bulbs or tube lights around the house that light everywhere, use directional lights too that can be focused on a particular area. You can also use dimmable lights to ensure you always have the brightness you want. And as for natural light, you can arrange for curtains to control it to your liking.

Reduce Required Reading: At home, try to limit the number of things you have to read. Reading puts quite a lot of strain on your eyes and when you are having vision problems, it makes no sense to put additional stress on your eyes for things which can be done otherwise. The key is to supplement reading with your own system at home to identify things easily. You can write the first letter of the product’s name on top of it in big bold letters to make it easier for you to find them. You can also use symbols and create your own language to find your products easily.

These are some of the ways you can optimise your living conditions and make your home an actual safe space for you both physically and emotionally. It is important to note that getting your diagnosis can have effects on your mental health too. And while patients often go into a shell after learning about their diagnosis there are ways on how you can keep yourself mentally healthy and cope with your condition.

Emotional and Psychological Well-being

Vision loss takes a toll on your emotional and psychological well-being in a way that only the people going through it understand. Our perception of reality and existence are very deeply rooted in our ability to see the world around us. Finding out a difficult diagnosis can shatter your spirit because it means one of the most fundamental abilities of your life is not going to be there with you as long as you live. It can lead people down to very dark places. While there is no easy way out of it. It is important to understand that all is not lost. With the right intervention, you can at least protect your vision from degrading further. You can also use any number of the assistance strategies mentioned above to help yourself live as normally as you usually did.

For patients with RP, vision problems increase over time and finding out you have RP as an adult can be difficult to process emotionally. It is important to understand that you are stronger than the conditions you have and there are actual practical ways you can live independently and help your vision from degrading further. But first there are things you need to do to come to terms with your diagnosis.

Acceptance: The first step to coping with any emotionally jarring event is accepting it. And accepting it in all its gravity. Losing your vision or even a part of it is a serious condition. You need to come to terms with that. This means you can’t downplay it. You can live in denial. When you come to terms with your condition, it will help you take proactive steps to helping you deal with the condition in the present. The future can certainly be scary when you are dealing with something like this. But that makes it so much more important to live the present properly.
Get The Help You Need: While it feels amazing for people to ask others to ask for help, it doesn’t work like that. Asking for help is not something to be ashamed of absolutely, but as an adult going through something like this, it can get hard opening up about it. This is why coming to terms and accepting the situation is the first thing you need to do. After that, it is important you get the help you need from professionals. If you don’t feel like that, talk to your loved ones and people who you can trust. Getting the help you need is important because that will sustain you and help you go through your days one by one.

Take Proactive Measures: As devastating as the diagnosis may be, it is important for you to move on from the shock and take necessary steps to help yourself. This begins with understanding the severity of your condition and your diagnosis on what happens in the future. Then doctors will guide you through treatment options that will help you manage the condition. Take their advice and go for the therapy options they recommend. Alongside, you should also take life easily and relearn the things you love again. Having your loved ones by your side during this time can be very empowering and encouraging so make sure you reach out to the people in your life when you need it.

Having a grasp over any situation emotionally will help you deal with it quickly and in the best objective way possible. Once you are able to deal with the initial shock, then comes the long term effects of having to go through endless lifestyle changes to adapt to your new vision conditions. They too can have a profound effect on your mental health if left unaddressed. So, let’s take a look at some ways how you can deal with the long term effects of your diagnosis and lifestyle changes.

Coping with Diagnosis and Lifestyle Changes

Take it Slow: When you are getting bad news and need to adjust to it immediately, it may feel like everything is happening around you at a million miles per second. That’s why you need to take everything slow at your pace. If there’s some lifestyle changes that are hurting you or taking time to get used to, don’t beat yourself up. Everything does fall into place eventually and all you need to do is to take each day as itself and work on getting through it. It does get better with time if you start slow.
Don’t Push Yourself: Even though you will feel the urge to do everything in your power everyday to somehow reverse your condition, but it’s not sustainable. Asking you to not push yourself may seem like bad advice, but it comes from a place of compassion. Think about it with an example, if you want to build muscles and you keep pushing yourself everyday to your absolute limit in the gym, there’s a higher chance you will hurt yourself or crash and burn.

You can’t achieve years of progress in days just because you are pushing yourself harder. Things that take time will take time and you will need to be patient with them. Health conditions are no joke and pushing yourself may not be in your best interest. So, what you should do instead is work collaboratively with your healthcare provider to understand your condition and take necessary measures to help yourself.

Know Your True Feelings: A lot of the times when you are pushing yourself, it can be because you are doing that to cover up your own feelings. It may be that you are scared, it may be you are anxious, it may be that you are sad. All of these feelings are perfectly valid and reasonable. So, rather than taking it out on yourself with self-destructive behaviour, it is important to look inward and figure these things out.

Why is that necessary? Because self-destructive behaviour can lead to addictions that may harm your health further. These habits can also negate any positive steps you are taking to help yourself. So, being in control of your mind and knowing your true feelings, certainly help navigate your situation and cope with your diagnosis and lifestyle changes better.

One of the key things that you will face during these stages is that while people are there to genuinely support and help you, most don’t have any idea what you are going through. While it’s not their fault, you may feel alone and vulnerable during these periods. That’s why you don’t just need help processing your emotions, you can also thrive by learning from the experience of others. Be it through social media or support groups, it can help manage your anxiety dramatically when you talk to other people who are going through what you are going through at the same time. So, let’s look at some of the best benefits of seeking support from support groups and counseling after getting your diagnosis.

Seeking Support from Support Groups and Counseling

Support groups and counseling have a great impact on people who are just receiving news about their diagnosis. You don’t have to start going there from day 1, but when you feel up for it, it will help you immensely. Learning from experience is how we grow as human beings and in this case, you will be able to learn from other people who go through the same things you are going through, maybe for longer than you.

This will help you see things more clearly and help with your anxiety about your condition. However, the best and most important benefit of participating in these activities is to find company. Going through something tragic can make you feel alone a lot, and these activities allow you to meet people who are going through the same struggles. So, you don’t feel as alone anymore when you are with these people. However, there are a few steps you need to go through to choose the support groups that can actually help you best.

The Group Demographic: People of different ages have different experiences and reactions to even similar events. This is why it is important that you choose the right support group for you that caters to people of the same age and specific condition as you. This will help you get the most out of your experience without being too bogged down by experiences that you can’t relate to or ones where they are not very relevant to you. So, even though learning about the experiences of different people going through different things can be fun, at times of personal tragedy it’s best to stick with people your age and problem at first, to get the most benefits.
Check The Location: It needs to be at a location where you can comfortably reach. The closer it is the better for you. Travelling long distances would only make you find reasons to not go in the end, and it will stop the progress you were making. Sometimes it may be possible that the ones near you aren’t the ones that’s best catered to your needs, in such cases, you need to actively make a choice on what you want. There’s nothing wrong in not sharing your experiences or learning from the people who are going through exactly what you are going through or are of your age.
Check If They Are Confidential: Confidentiality is a good thing for support groups. You would not want the details you share there to come out in the public. So, how do you find out if they are confidential? You have to see how strictly do they have enforced rules for their meetings and confidentiality. This will help you determine the safest location for your support group. Do note that if the groups closest to your location don’t have much guidelines about confidentiality it may be a good idea to look for other options.

Building Resilience and Acceptance

And when you do all the things mentioned previously, it helps you build resilience and find acceptance in your heart. Your condition doesn’t define you, and no matter how scary it is to be diagnosed with RP, you are stronger than it. These baby steps go a long way into helping you take positive steps into taking control back in your life. In the meanwhile please know that there is no timeline for when you should be able to reach this step. It may take a week, a month, or even a year. There is nothing wrong in any of those cases.

Step by step when you are able to take back control and regain normalcy in your life you will be able to find new hobbies and lifestyle habits that will be just as fun as the ones you had before. It is all about self-love, treating yourself with kindness, and having acceptance. A lot of people turn to their spiritual side during these periods too and if it helps you, it is a great way to manage your mental health too. So, if you are interested, you can feel free to explore that side of your life too.

Enhancing Quality of Life

As mentioned in the previous point, enhancing your quality of life comes to play once you have successfully adjusted to your new lifestyle. This way you will be making positive progress towards protecting your eyesight and not putting unnecessary strain on your eyes to cause pain or just general inconvenience. Plus, enhancing your quality of life is not very difficult. All you have to do is find new hobbies and interests where you can enjoy safely. It may seem hard on day one, but as you go through the days slowly adapting to the changes, you will find new and exciting activities that you couldn’t do before.

Maybe you will finally have time to catch up on all the books you never had the time to read using audiobooks, or you will find a podcast that speaks your truth to power. In this digital age there are a million options for everyone to help them enjoy their life and time. And when you slowly come to terms with your condition, you will find these options and find your lost joy. And when you combine that with your positive habits that help protect your vision, soon you will be able to go through normally again as you did before without even remembering all the changes you made to get to that point.

It does get easier and to enhance your quality of life, do remember to focus on using technology to your favour. You can also take experiences from your support group and put them to practice in your regular life to find new hobbies. You can also get into music or learning an instrument if that’s in your interest. Also, enhancing quality of life is more than just a hobby. Make sure you also find work where you can be comfortable and not be discriminated against. You should also be taking care of your overall health and exercising plus eating healthy. All these things combined will help you feel better physically and happier generally in your life improving your life quality.

Developing Hobbies and Interests

Hobbies and interests are what help you get through life and give you that semblance of normalcy. After all, it is what you spend your time doing. While you already know how important it is to develop new hobbies and interests or find ways to adapt your old interests into your new lifestyle. Let’s take a look at some of the best new hobbies and interests you can develop or ways you can adapt your old hobbies into your new lifestyle.

Indoor Games: Chess, cards, other board games, pool, carrom, these are all games you can enjoy playing even with RP. There are specific variants of these games made specifically for people with vision problems or you could use magnifying or reading glasses to play the regular versions of these games only.
Crafting: Pottery, basket weaving, Painting, these are just some of the crafts you can learn and spend time doing. These habits can also be relaxing and help you calm your nerves when you are feeling anxious and when you get better at it with time, these skills are monetisable which can help give you a mode to get paid from your work while being able to express yourself freely.
Gardening: Gardening is a fun hobby too where you get to make friends with the plants in your garden. Based on your interest you can either go for flower plants or crops. Having your own raised crops is very healthy and can be very empowering. In the long run, it will also help you save a ton of costs. And with modern tools farming at home is not labour intensive nor difficult with some knowledge and a will you can easily do it too.
Exercising: This is another thing you can do at home even without any weights or equipment. Training against your bodyweight and increasing the number of sets and reps when you get comfortable is a great way to stay healthy. Plus, exercising is a great way to improve blood circulation throughout your body which can especially help with oxygenating your retina. For patients with RP, it can help you maintain your retinal health and protect it against further degradation due to RP. You can also check out eye yoga, which are simple exercises that specifically help you improve blood circulation in your eyes.

Navigating Education and Employment

After getting your diagnosis, getting back to your education field and employment may seem challenging but in general it is crucial for you to continue your life normally. Generally, adaptive technologies can help you navigate your education and college space. This includes using high contrast settings on your digital devices. Using screen readers and headphones. For navigating the outside world, using navigational tools and canes can be very helpful if you need them. Otherwise, you may also opt for high power prescription glasses to help correct your vision for when you are outside.

Colleges and workplaces are bound not to discriminate against you because of your condition. Unless your condition makes you unable to continue in your current position, companies can’t fire you from your job. You may even request a transfer to other departments in your workplace where you won’t be challenged working to make it easier for you. In colleges, make sure the educational material is provided both physically and digitally. You should also be able to use your adaptive tools in college to ensure you are able to complete your classes on time.

These are just some of the ways you can navigate work and education after your diagnosis. You can learn more about your struggles by discussing them with your healthcare provider. Based on your specific difficulties, they will be able to offer you better solutions that cater to your needs and allow you to perform and participate in work and education without any barriers. Education and being able to earn a living are basic human rights and you should know that if you are being discriminated against or if you are being harassed, there are government authorities where you can complain and get your problems heard.

Getting back to your workplace and education after your diagnosis is perhaps going to be the hardest part. This is mainly because getting back involves going out into the world and interacting with people outside your safe circle. With the current trends in the world, people are rude and unkind and even though there are laws to protect your rights, people will still try to get on your nerves and harass you at every step of the way. That is just how it is and as heartbreaking as it is, you have to have a strong network of family and friends to help you get through that transition.

Building a Supportive Network of Friends and Family

Building a network of supportive friends and family starts with you asking for help from trusted loved ones. With people who you know won’t judge you. Being open about your problems to your friends and family is the easiest way for you to ensure you can get the support you need to get through your problems. If you don’t feel comfortable sharing your problems with your loved ones, you can go for professional therapy who would help you navigate your problems.

Similarly, you can make friends online on message boards and community sites where you can be anonymous and talk about your issues with virtual friends. It may sound weird but it is actually a great way to find like minded people that won’t judge you. It also becomes a digital safe space where you can share your feelings and experiences with people who you wouldn’t have to face in your everyday life.

Finding support from friends and family differs for everyone. Based on your life and the people that surround you, your process will differ from the one next to you. The important thing to remember and understand while living with RP is to be open. You may find support and love from the most unexpected sources. You may be able to give support to someone who is going through what you were going through just a few days ago. So, be open to love and be receptive to your needs and to the ones around you who are also suffering. With kindness and love you can go through any problem and come out of it stronger and better.

And while you are taking your mental health seriously and taking steps to ensure you are doing your best in that department, remember to also be in regular contact with your doctors to keep monitoring your condition. It will help you manage the different treatments you may use to keep your condition in check. This way you may just be able to go through the remainder of your life without losing your eye sight further and enjoying your life in the process.

Conclusion

These are some of the best ways for you to adapt to vision loss and using these various tools and solutions, you should be able to go through life normally. However, the most important among these solutions is to opt for vision therapy and rehabilitation. At Sanjeevan for perfect eyesight, we take special care to ensure your condition is properly diagnosed and managed using vision therapy and other new-age treatment options.

As you know it won’t be able to treat or cure your condition, but it will be able to stop further degradation of your retina and protect your eyes from further vision loss. Our specialists also offer counseling and support to patients to help them understand their condition better and cope with it. To learn more about our treatment options for retinitis pigmentosa visit our website today.