Canadian Resources, Usher's Syndrome, Vision Loss

Does your child need a mobility cane due to vision loss?

Continue reading “Does your child need a mobility cane due to vision loss?”

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When your partner experiences sensory loss.

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PHOTO CREDIT: https://www.rd.com/advice/relationships/happy-marriage-feel-loved/

To experience loss of hearing and loss of vision is a scary process. Your thoughts wander to:  What does this mean? How does this loss define me? How can I remain independent? But, one question that is just as important to recognize: How is my partner coping with this new loss?

Researchers from the University of Copenhagen and the University of Montreal have released an abstract to the public addressing concerns that couples have when a partner in the relationship is experiencing sensory loss. Intra- and interpersonal effects of coping on the psychological well-being of adults with sensory loss and their spouses is a great article that shares their findings for couples and professionals who need to be aware of what one partner is going through and how that loss is tied into their spouse’s well-being. The researchers of the article conducted their research over a six-month period, and we can expect more articles to come.

There is a supportive group on Facebook called Usher Syndrome (of America) Support Group, which is a closed group but offers support to those experiencing hearing and vision loss due to Usher Syndrome. If you are looking for support in vision loss that is unrelated to Usher Syndrome you can check out CNIB, and Canadian Hearing Society. Resources in the United States can be found at National Federation of the Blind, and Hearing Loss Association of America.

Retinitis Pigmentosa, Usher's Syndrome, Vision Loss

Holiday gatherings are stressful to those living with Retinitis Pigmentosa

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Image from https://www.walldevil.com/blurry-christmas-tree-lights-wallpaper-724788/

Imagine sitting around in your grandmother’s living room and all you see is your nephew opening up a Christmas gift. Once you hear a conversation happening in the living room you realize that there are five other family members in the room with you.

You or someone you love may be experiencing their progression of Retinitis Pigmentosa (RP). National Eye Institute shares that RP is a rare disorder, that affects the rods and cones of the eye. Peripheral vision, and night vision are one of some symptoms that resultsfrom affected rods and cones, and more research on RP are available for more information.

Retinitis Pigmentosa Versus Normal Vision
Vision (left) shows normal vision versus someone who has RP (right). Image from https://nei.nih.gov/health/pigmentosa/pigmentosa_facts

Here’s what someone with RP may be anxious about:

  • Is anyone going to trip over my cane?
  • What if I don’t see the person sitting next to me and I appear rude?
  • Will I run into anybody while I’m walking?
  • Are there going to be toys out for me to trip over?
  • Can I get up the front entrance steps without help?

Your loved one’s RP may be something new to you or your family, but there are resources to help make the holidays easier for them. The CNIB has a list of helpful tips on how to ensure your loved ones are involved in everything you have to offer.