Our ‘COVID-19 Updated’ page provides some more information and advice which you may find useful. Please click here to see our previous page which contained tips on how to stay safe during the COVID-19 pandemic.
With or without the Coronavirus pandemic, maintaining good eye health is very important for those with Usher syndrome. While the deterioration of eyesight due to retinitis pigmentosa (RP) associated with Usher syndrome cannot be slowed down or stopped, there are many other conditions that may interfere with the remaining vision such as cataracts, glaucoma, and cystoid macular edema (CME), for which there are treatments available.
While services may be restricted during this time, urgent and emergency cases will be seen, and therefore you should contact your optician/eye clinic immediately if you are experiencing any changes in your vision.
Looking after your hearing health is important too. If you are experiencing any changes to your hearing please get in touch with your audiologist who will advise you what to do next. If you are running low on batteries contact your hearing aid provider who will be able to post them out to you. If you are a cochlear implant user, and are experiencing issues with your cochlear implants/processors, get in touch with your cochlear implant centre who will provide help and information. Some appointments may be available and they will do everything they can to assist you.
With masks becoming more commonplace to help stop the spread of the Coronavirus so does the difficulty for some people to understand speech. One great way to overcome this difficulty is to have a text-to-speech app on your phone. Google Live Transcribe (for Android phones), was designed specifically for the Deaf and hard of hearing, and provides real-time transcription of speech and sound to text on your screen. For iPhones, a popular app is Texter – Live Transcribe.
If you, or someone you know, are working in settings where there are interactions with members of the public, ask if it could be possible to use clear masks,. Wearing clear masks improves the ability to lip-read making it easier to for those who rely on it to understand what is being said.
it is important to still get exercise during this time, while following the government’s guidelines, as it is beneficial for your mental health as well as physical health. Maintaining social distancing while outdoors for exercise purpose may prove difficult for people with vision loss. Using a mobility/symbol cane should signal to others that you cannot see as well, and it is their responsibility to ensure they adhere to the social distancing rules. If you can, have a sighted guide accompany you to help make your exercise less stressful. If you are finding this difficult or stressful, then perhaps consider doing an exercise routine at home. There are many online YouTube videos to suit everyone’s ability and preferences with easy to follow instructions.
We Are Undefeatable provides some great tips on how to stay active in the home that might suit you.
Grocery shopping can a stressful experience for many, and even more so for people with Usher syndrome. While it is impossible to eliminate all stress there are some steps that you can take that may help to reduce it. If you are shopping by yourself, using a symbol/mobility cane will help to signal to others that you have a vision loss and it is to them to ensure that they maintain the correct distance from you. Some supermarkets may provide assistance if you can let them know beforehand of your requirement.
You can also be accompanied by a sighted guide from your household on your grocery shopping. While some supermarkets restrict shoppers to only one from each household, exceptions are made for a sighted guide to support those with vision loss.
Priority online shopping is also being provided by many supermarkets. Sight Advice website provides a list of supermarkets that are prioritising and helping those with disabilities through their online delivery services. You can access this information by clicking here.
It has never been more important to stay connected as we stay apart. Thankfully the technology available these days allows many to stay in contact. There are now many video chat apps that allows you to chat and see your friends and family members for free. What makes this more accessible to many is the live captioning that is provided on many of these video chat apps, but if you find that they are not great for you then consider using a live transcribe app (as mentioned above) on your phone and place it next to the speakers of the PC/tablet. Many users find this works very well.
If you wish to chat with others with Usher syndrome, then you might be interested to know that Sense Usher is running a Zoom Usher Chat Room through the months of May and June. Contact them at firstname.lastname@example.org to register your interest and receive joining instructions.
Getting help in an emergency
Find out on our Getting help in an emergency page the different ways you can access the emergency services.
A list of British Sign Language (BSL) resources that may provide useful information in relation to COVID-19 can be found by clicking here.
GOV.UK Find the latest information on the official Government website with the most up-to-date information on COVID-19
RNIB– Coronavirus updates
National Deaf Children’s Society – Coronavirus and support for deaf children – information for families.
Clcik here to return to our COVID-19 Latest News and Updates page.