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Worried about my sister-in-law (self.Blind)
submitted by effidoll
Please delete if not allowed.
If anyone can offer some advice then I will love you forever!
My sister in law is losing her sight. The doctors can't figure out what it is, however she has described her sight loss in her one eye as if your looking through a shower door and it's steamy, and it will get worse until she can no longer see. The other eye is fine (but no idea if it could do the same) so far but she does have keratoconus in both eyes. (Sorry if I have the wrong words and terminology I haven't got the best memory!) Now she is going through a massive rough patch with all of this, shes early 30s and an artist and she has become a shell of her former self. She's sought help with her doctors for the mental health part which she is soldiering on bless her. We have no one in the family who is blind or partially sighted so this is all new to us.
Now that's a bit of background, my question is with her losing her sight is there anything we should be doing or not doing as a family to support her, help her etc or anything that you may think is helpful. I adore my sister in law, and seeing her struggle so much is heart breaking so any advice anyone can give or suggest I will be forever grateful.
Thank you xxx
If anyone can offer some advice then I will love you forever!
My sister in law is losing her sight. The doctors can't figure out what it is, however she has described her sight loss in her one eye as if your looking through a shower door and it's steamy, and it will get worse until she can no longer see. The other eye is fine (but no idea if it could do the same) so far but she does have keratoconus in both eyes. (Sorry if I have the wrong words and terminology I haven't got the best memory!) Now she is going through a massive rough patch with all of this, shes early 30s and an artist and she has become a shell of her former self. She's sought help with her doctors for the mental health part which she is soldiering on bless her. We have no one in the family who is blind or partially sighted so this is all new to us.
Now that's a bit of background, my question is with her losing her sight is there anything we should be doing or not doing as a family to support her, help her etc or anything that you may think is helpful. I adore my sister in law, and seeing her struggle so much is heart breaking so any advice anyone can give or suggest I will be forever grateful.
Thank you xxx
ravenshadow2013 5 points 1y ago
First, PLEASE don't treat her as if she is the sight loss. You said she still has a good eye so don't dwell on the bad.
If this condition progresses you may want to talk to a vocational specialist who then could recommend an action plan
And always remind her that it's not the end of the world
If this condition progresses you may want to talk to a vocational specialist who then could recommend an action plan
And always remind her that it's not the end of the world
effidoll [OP] 3 points 1y ago
Thank you so much for taking the time to reply xxx
Personally I did think that at first, but then I thought thinking that way (that she has one good-ish eye) would invalidate what she is going through? Or how she is feeling perhaps? She's a glass half empty kind of person in general so my worry was making things worse. Sure positivity like what you said I'd the way forward. Thank you xxx
Personally I did think that at first, but then I thought thinking that way (that she has one good-ish eye) would invalidate what she is going through? Or how she is feeling perhaps? She's a glass half empty kind of person in general so my worry was making things worse. Sure positivity like what you said I'd the way forward. Thank you xxx
ravenshadow2013 3 points 1y ago
When my eyesight took its turn to what it is now I had people on both sides of the fence on one hand it was pretty bad that I couldn't see well enough to drive anymore, but I was reminded that just because I couldn't drive the knowledge I'd accumulated over the years didn't go away I just had to find new and inventive ways of using it. This line of thinking is what got me through and gas placed me almost where I want t I be now
effidoll [OP] 2 points 1y ago
That's a really good way to look at things, I really hope she comes round like you have said you did. Not just with driving but with everything, she is so capable and I know she will I think has just knocked her for six. The not being able to drive anymore really hit her hard, she said it was like someone took her independence away so she was relying on people to get about. As its all very new she hasn't quite got the grasp of how far away things are with one eye not working (i hope im making sense!) She is falling over a lot as a result, so she's scared of getting the bus by herself but I'm sure her confidence will come with time.
Do you mind me asking how you applied your knowledge from driving to other things please. Perhaps I could get her to start thinking of applying things differently xxxxx
Do you mind me asking how you applied your knowledge from driving to other things please. Perhaps I could get her to start thinking of applying things differently xxxxx
TechnicalPragmatist 4 points 1y ago
Definitely being there for her is useful. Get her in to more tactile arts, clay, sculpting maybe? Other type of art. Crafts maybe like crochet or knitting.
Life has definitely not ended and she can still do a whole lot of things.
She can still be an artist maybe different type or adapted. I know blind people who like to make jewelry. Tell her life doesn’t end she just has to learn and adjust.
Get her some cane training, training on inependent skills, and assistive technology.
Life has definitely not ended and she can still do a whole lot of things.
She can still be an artist maybe different type or adapted. I know blind people who like to make jewelry. Tell her life doesn’t end she just has to learn and adjust.
Get her some cane training, training on inependent skills, and assistive technology.
effidoll [OP] 3 points 1y ago
That is such helpful advice, thank you so much xxx
My husband (her brother) did try explaining the art side of it, but went over her head. I think the news was too fresh for her to take everyone's suggestions in, and the fact that he is the least tactful person I've met in my life. The tactile approach is a good shout now it's sunk in with her, and a chance to explore lots of crafts.
100% I will look into the training for her, I never even thought of things like this before so I really appreciate you replying. Thank you xxxxx
My husband (her brother) did try explaining the art side of it, but went over her head. I think the news was too fresh for her to take everyone's suggestions in, and the fact that he is the least tactful person I've met in my life. The tactile approach is a good shout now it's sunk in with her, and a chance to explore lots of crafts.
100% I will look into the training for her, I never even thought of things like this before so I really appreciate you replying. Thank you xxxxx
TechnicalPragmatist 2 points 1y ago
Not a problem.
Maybe sitting down with her and showing her or doing it with her or proposing that you show her a new activity or something, something you can do once. And get her a few supplies to get her started some clay as a starter. A crochet needle and a ball of yarn. Depends how elaborate you want to get a metal needle or just a cheap plastic one.
I mean you can be really really nice and get her the entire set.
Yes exactly tactile crafts can be fun too and nice and as an artist she can continue and same with crafts. Explore different ones.
Maybe sitting down with her and showing her or doing it with her or proposing that you show her a new activity or something, something you can do once. And get her a few supplies to get her started some clay as a starter. A crochet needle and a ball of yarn. Depends how elaborate you want to get a metal needle or just a cheap plastic one.
I mean you can be really really nice and get her the entire set.
Yes exactly tactile crafts can be fun too and nice and as an artist she can continue and same with crafts. Explore different ones.
effidoll [OP] 1 points 1y ago
Thats such a good idea, make it even more fun if I do it with her to start as im so usless that its hillarious!! She's more than worth it so I can see me dragging my husband round Hobby Craft tomorrow! What a lucky man!!
Thank you again for your suggestions and advice, you have been amazingly helpful xxxxx
Thank you again for your suggestions and advice, you have been amazingly helpful xxxxx
TechnicalPragmatist 3 points 1y ago
Not a problem.
:D that sounds fun for everyone.
Yeah, I think doing it together will be nice and may be less intimidating for her.
At some point she may have to learn to adapt it and we can talk about it blind people without vision feel the yarn a lot and count holes to crochet. It’s hard to explain but some of these are easier to adapt though.
Is there a local blind place. Maybe they have some activities and she could go or you both can go and see if she can get involved with some and to learn how to do it.
If you need anymore help ask.
:D that sounds fun for everyone.
Yeah, I think doing it together will be nice and may be less intimidating for her.
At some point she may have to learn to adapt it and we can talk about it blind people without vision feel the yarn a lot and count holes to crochet. It’s hard to explain but some of these are easier to adapt though.
Is there a local blind place. Maybe they have some activities and she could go or you both can go and see if she can get involved with some and to learn how to do it.
If you need anymore help ask.
effidoll [OP] 1 points 1y ago
Thats such a good idea, make it even more fun if I do it with her to start as im so usless that its hillarious!! She's more than worth it so I can see me dragging my husband round Hobby Craft tomorrow! What a lucky man!!
Thank you again for your suggestions and advice, you have been amazingly helpful xxxxx
Thank you again for your suggestions and advice, you have been amazingly helpful xxxxx
mapleswee 2 points 1y ago
I hear your pain, it must be so hard for everyone involved.
Maybe help her get third and fourth opinions? My sister only got diagnosed after Stargardts Disease after going back to our home country and get tested there for a full day in an eye clinic complex. It then took her taking all the results and cds of images for the optometrists that were 'observing her' for 2 years to keep testing her and finally diagnose her properly. Maybe more intensive testing is needed in her case.
With my sister, besides helping her advocate for herself at her doctor's appointments and all that, I've helped her by finding connections with associations for the blind and support groups. Something that she's said it helped her tremendously is to understand that blindness is a spectrum and that is rare to see someone 100% without sight.
Something she also has said that have helped is for me to 'go along' in the journey with her. Basically, we go for walks where she'll close her eyes and use her cane, I guide her and then we switch roles lol. It helps ME get a sense of what she's going through and it shows HER that I'm there for her, makes the process a bit funny (apparently with me, the cane becomes a weapon lol) and can sympathize with her.
Maybe help her get third and fourth opinions? My sister only got diagnosed after Stargardts Disease after going back to our home country and get tested there for a full day in an eye clinic complex. It then took her taking all the results and cds of images for the optometrists that were 'observing her' for 2 years to keep testing her and finally diagnose her properly. Maybe more intensive testing is needed in her case.
With my sister, besides helping her advocate for herself at her doctor's appointments and all that, I've helped her by finding connections with associations for the blind and support groups. Something that she's said it helped her tremendously is to understand that blindness is a spectrum and that is rare to see someone 100% without sight.
Something she also has said that have helped is for me to 'go along' in the journey with her. Basically, we go for walks where she'll close her eyes and use her cane, I guide her and then we switch roles lol. It helps ME get a sense of what she's going through and it shows HER that I'm there for her, makes the process a bit funny (apparently with me, the cane becomes a weapon lol) and can sympathize with her.
mapleswee 2 points 1y ago
Another thing I do to help her and ease how much of her condition permeates her everyday (she's living it after all!) Is to join this reddit sub to get ideas/hacks or learn coping strategies that may help her. Her disease is super rare so getting guidance from her doctors is difficult. So, I also follow a bunch of Tik Tok and YouTube accounts from people with the same condition for the same reason. We have helped lots of good things for her there, from common aggravating factors to cool devices, including ideas for adjusting how she does her hobbies and more.
Hope some of these ideas help!
Hope some of these ideas help!
effidoll [OP] 1 points 1y ago
Thank you for all of this wonderful information and for sharing your ideas xxxxx
Your sister is very lucky to have you, you really sound like an amazing sister and so supportive. I will be following your example and making sure the rest of the family does to.
My mother in law has mentioned getting a second opinion. Between her getting tested, then covid outbreak, then testing with such vast gaps between them, amongst many cancellations and messing about. Don't get me wrong, obviously I'm no doctor but I a bit of consistency should be a better approach I would think.
Myself and my sister in law follow a lady on insta who has stagardts, and another lady who lives 2 valleys away from us (can't remeber what she has) but they have been encouraging. They have videos on how to do make up and how they manage day to day, its so interesting. At the moment she is following them but she tends to not want to deal with it all right now. She's still very much in denial and awful depressed, the poor thing.
Do you mind if I ask, when your sister was being examined over a long period of time did that take a toll on her too? My husband thinks this is a contributing to how she's feeling.
Also if you can recommend any TikTok or YouTube creators that would be amazing xxxxxx
I wil l definitely be following more sub reddits too, honestly the community here has been so warm, welcoming and really patient with their explaining. I'm so grateful xxxxxx
Your sister is very lucky to have you, you really sound like an amazing sister and so supportive. I will be following your example and making sure the rest of the family does to.
My mother in law has mentioned getting a second opinion. Between her getting tested, then covid outbreak, then testing with such vast gaps between them, amongst many cancellations and messing about. Don't get me wrong, obviously I'm no doctor but I a bit of consistency should be a better approach I would think.
Myself and my sister in law follow a lady on insta who has stagardts, and another lady who lives 2 valleys away from us (can't remeber what she has) but they have been encouraging. They have videos on how to do make up and how they manage day to day, its so interesting. At the moment she is following them but she tends to not want to deal with it all right now. She's still very much in denial and awful depressed, the poor thing.
Do you mind if I ask, when your sister was being examined over a long period of time did that take a toll on her too? My husband thinks this is a contributing to how she's feeling.
Also if you can recommend any TikTok or YouTube creators that would be amazing xxxxxx
I wil l definitely be following more sub reddits too, honestly the community here has been so warm, welcoming and really patient with their explaining. I'm so grateful xxxxxx
mapleswee 1 points 1y ago
Honestly, my sister is a bit in denial still. She only got properly diagnosed only until the beginning of last year (after 2 years of tests!!), and is still a hard thing for her to come to grips with. She had started suffering from depression and anxiety 5 years back and she was able to be a peace with it a lot faster than with her Stargardts diagnosis.
My sister's situation is a bit differently than your sister in law's though. Although the diagnosis itself did make her depression worse for a little bit temporarly, she was looking for an answer for a while.
So, getting a diagnosis helped her realize it wasn't "all in her mind, nor was she "making it up for attention." Which unfortunately is something that the medical system seems to default to when you're dealing with any mental health illness sufferers. Just the fact that she was taken seriously and then her issues been validated by the doctors back home, (which then got confirmed here - finally), made her mood improve tremendously.
One of the things that my sister has told me that really help her is also seeing stuff from people with other type of disabilities, such as deafness. It just help to see other people living their lives fully. Anywhere from the grumpy blind young girl who's funny as heck, to the foul-mouthed deaf guy who teaches sign language swears and songs, to the one-legged guy with the many costumes, to the punny blind hippy guy plus the cool skateboarding blind kid, and all in between. All of them help her see that disabilities don't mean the end of one's world nor a loss of personality, but rather a different frame to experience the world with.
My wifi is spotty where I am this weekend, but I'll add some of the accounts I follow tomorrow night. Your sister is law is lucky to have you and all of your family xxx
My sister's situation is a bit differently than your sister in law's though. Although the diagnosis itself did make her depression worse for a little bit temporarly, she was looking for an answer for a while.
So, getting a diagnosis helped her realize it wasn't "all in her mind, nor was she "making it up for attention." Which unfortunately is something that the medical system seems to default to when you're dealing with any mental health illness sufferers. Just the fact that she was taken seriously and then her issues been validated by the doctors back home, (which then got confirmed here - finally), made her mood improve tremendously.
One of the things that my sister has told me that really help her is also seeing stuff from people with other type of disabilities, such as deafness. It just help to see other people living their lives fully. Anywhere from the grumpy blind young girl who's funny as heck, to the foul-mouthed deaf guy who teaches sign language swears and songs, to the one-legged guy with the many costumes, to the punny blind hippy guy plus the cool skateboarding blind kid, and all in between. All of them help her see that disabilities don't mean the end of one's world nor a loss of personality, but rather a different frame to experience the world with.
My wifi is spotty where I am this weekend, but I'll add some of the accounts I follow tomorrow night. Your sister is law is lucky to have you and all of your family xxx
effidoll [OP] 1 points 1y ago
Thank you so much again, your replies have been really helpful. I've found that there is a blind institute local to her that have a support group so we are going to start there. As much as she doesn't want to go, she is going yay! xxxxx
zombinsanity 2 points 1y ago
I myself am 30 and recently became visually impaired. I was in denial a long time. There is very little that can be done for me. I find while I love the support of my family, my biggest struggle is losing the things I love to do. I had a stroke in June 2022 at 29 and then noticed significant vision loss by September. I had eye surgery in October and it was determined that my right retina was completely detached. My right eye is mostly blind with limited light vision. There are no details in it. I can read but my overall remaining vision is 20/150 I believe. I am adjusting but I’m very depressed about it. It’s not the end of the world. It was however the end of my photography. For now. I may be trying again soon. For the first time
effidoll [OP] 1 points 1y ago
Thank you for sharing that with me, and I'm so sorry to hear you've had such a difficult time. Depression is an absolute bitch, I wouldn't wish it on anyone. Xxxxx
I think she is on the cusp of coming out of the denial stage, or at least in the end stages.
Please do try photography again, especially if it's a passion. I know I and I'm sure many other people here would love to see what you have captured. Xxxxx
I think she is on the cusp of coming out of the denial stage, or at least in the end stages.
Please do try photography again, especially if it's a passion. I know I and I'm sure many other people here would love to see what you have captured. Xxxxx
maxyield5 2 points 1y ago
Thank you, I will be listening for a reply
ravenshadow2013 2 points 1y ago
If you ever need advice I am a job coach for FDOE and always happy to answer questions and give support
effidoll [OP] 2 points 1y ago
You are an absolute diamond, thank you so much again xxxxx
maxyield5 2 points 1y ago
Very similar to my vision problem in one eye.
My doctor's ( all retinal specialists ) have been unable to trace my pathology. But they can see there is an issue with both eyes (right eye, detached retina, left eye unknown, both eyes pupils are fixed and dilated).
Me not being a doctor am about tired of hearing that they being the specialists are unable to determine the pathology, but I keep suggesting that maybe they need to look deeper inside my head, like maybe send me to a Neuro,- opthalmologist and have the cerebral nerve path traced. But yet again, not the doctor and therefore I don't know what I'm talking about, hmm.
I wish her the best of luck in finding a doctor that will actually take a moment and humble him or herself and find the issue before it's too late to save her sight.
Please keep me posted as to her outcome.
My doctor's ( all retinal specialists ) have been unable to trace my pathology. But they can see there is an issue with both eyes (right eye, detached retina, left eye unknown, both eyes pupils are fixed and dilated).
Me not being a doctor am about tired of hearing that they being the specialists are unable to determine the pathology, but I keep suggesting that maybe they need to look deeper inside my head, like maybe send me to a Neuro,- opthalmologist and have the cerebral nerve path traced. But yet again, not the doctor and therefore I don't know what I'm talking about, hmm.
I wish her the best of luck in finding a doctor that will actually take a moment and humble him or herself and find the issue before it's too late to save her sight.
Please keep me posted as to her outcome.
effidoll [OP] 1 points 1y ago
Thank you for sharing your experience, it sounds like you've been through the mill there, and very similar to what she is experiencing too! I know she has seen a neurologist, but I'm not too sure if they were a specialist like you have explained. After she had her lumbar puncture she basically didn't ever want to see a doctor again, even more so when nothing was determined. She has a few more appointments coming up so I will be sure to get her to ask about what you have said if she already hasn't. Of course, I will make an edit as soon as she has more news. Xxxxx
maxyield5 1 points 1y ago
Cerebral*
maxyield5 1 points 1y ago
The condition I was referring to is called cere6nerve neuropathy.
I sincerely hope this is of help to her.
Have a blessed day
Max
I sincerely hope this is of help to her.
Have a blessed day
Max
effidoll [OP] 1 points 1y ago
Thank you so much xxxxx
RunsOnBoltCoffee 1 points 1y ago
Did it start/is it concentrated in her central vision? Blind spot is where she focuses her vision? Sounds like LHON; Leber’s Hereditary Optic Neuropathy. Have her Doctor examine her optic nerve at her next appointment. Find a local nuero-ophthalmologist if her nerve is pale. A genetic test would be required to confirm diagnosis.
effidoll [OP] 1 points 1y ago
I believe it did, I will be speaking to her an my mother in law later today so I can find out. I think the first condition they thought it was was Stargardt disease but it turned out that it wasn't. Thank you so much, i will be sure to let them know!! Xxxxx
RunsOnBoltCoffee 2 points 1y ago
I’ve had LHON since 2009. Happy to answer any questions if that ends up being the diagnosis.
effidoll [OP] 1 points 1y ago
Thank you so so much, I've mentioned it to my mother in law as she goes to all appointments with her and she hasn't heard of it before so she will be mentioning it. Thank you xxxxx
ravenshadow2013 1 points 1y ago
When you are actively driving uou know where you're going and it's second nature to navigate via land marks instead of signs,
More so the other life experiences don't go away either if you know how to cook you just change the way you go about it I'm not completely blind (20/200) but I still know how to do my old job( I was a plumber) and even if I can't do most of that I can still bank my knowledge
More so the other life experiences don't go away either if you know how to cook you just change the way you go about it I'm not completely blind (20/200) but I still know how to do my old job( I was a plumber) and even if I can't do most of that I can still bank my knowledge
effidoll [OP] 2 points 1y ago
Ah I got you now, I understand what you mean. Thank you so much for explaining and giving advice on this, I really appreciate it and it means the world xxxxx
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