How many deafblind AD'ers are out there?

[Hear Again]

ouch....I dont even understand how thats possible. you and I may be close to our ages, and we share the common left hand trait.

I do sign with my left hand, write and eat, use power tools and eat my dinner with it. You sure did wear it out faster than I expected myself to wear it out.

my doctor isn't at all surprised by the fact that this happened to me given how active i am. i also forgot to mention that i've been using tactile sign on a consistent basis since 1995. tactile sign is very physically demanding, so it wouldn't be unusual that cts could also be triggered by that as well. my doctor thinks the acceleration of my cts symptoms is due to the fact that i use my hands (especially my left hand) more than sighted people do. when you think about it, that makes perfect sense.

 

[sablescort]

my doctor isn't at all surprised by the fact that this happened to me given how active i am. i also forgot to mention that i've been using tactile sign on a consistent basis since 1995. tactile sign is very physically demanding, so it wouldn't be unusual that cts could also be triggered by that as well. my doctor thinks the acceleration of my cts symptoms is due to the fact that i use my hands (especially my left hand) more than sighted people do. when you think about it, that makes perfect sense.

it does especially because your left hand is linked to the right-side of your brain. Plus your hands are really doing the work for both the sight and hearing you lost in the 1st place. it means a blind-hearing person would not have cts because he or she has their ears working harder than sight. Now bam deaf-blind person, it's the hands that really takes so much a heavy load being the eyes and ears to a deaf-blind person at the same time.

 

[Hear Again]

it does especially because your left hand is linked to the right-side of your brain. Plus your hands are really doing the work for both the sight and hearing you lost in the 1st place. it means a blind-hearing person would not have cts because he or she has their ears working harder than sight. Now bam deaf-blind person, it's the hands that really takes so much a heavy load being the eyes and ears to a deaf-blind person at the same time.

that's true and makes perfect sense.

 

[Hear Again]

oops. sorry for going off-topic everyone.

 

[sablescort]

Have your written signature style changed since you got CTS?

 

[Hear Again]

Have your written signature style changed since you got CTS?

yes it has. i used to be able to write my name in cursive so that it was legible, but now i can't. whenever i sign my name, all of the letters overlap each other. i'm thinking about getting a signature hand stamp so i no longer have to worry about using a pen.

 

[Aleser]

aleser,

do you have any physical condition in your wrists such as arthritis or cts?

my diagnosis of cts was recent and based upon the overuse of my left hand (i'm left handed) due to typing on a keyboard for 25 years, reading braille, using a cane, holding onto my guide dog's harness, writing with my left hand to sign my name, using a slate and a variety of other things. my doctor also said that it's not surprising that i have severe cts given the fact that (like you) i use my hands more than the average sighted person does.

Unfortunately, I don't have a diagnosis for either the common hits like CTS all the way down to the rare disorders. I do have a physical diagnosis for being weaker-in-general, but it does not explain specifically having more difficulty moving a finger or tightening my hand than, tightening my foot or moving say a knee or ankle, hip or head. As far as a reason/diagnosis goes, 'it's idiopathic' (we don't know why that's happened or what's happened, really) doesn't count for much.

Relatively, it's a limitation I struggle with much less than deafblindness- or anything else wrong with my defiant little body ! It was a lot harder to deal with before I really discovered that there were things I could do beyond looking for an answer- actually coping with the reality(a less than novel concept that neither I, nor my family, seemed to connect very well to this particular limitation).

After that, very simple things like modified grips on door handles and (finally!) silverware I could hold became (and have remained) things I don't think too hard about often. our light switches are now the large ones that can be clicked on the top or bottom to indicate on or off, so i can push on or elbow them instead of fiddling with a switch.

Door handles in public are still a pain in the butt, and the machine at the grocery store that spits out your correct change into a deep circular metal 'dish' (so you scoop it out) makes me very unhappy... aside from that, no earth shattering problems.

While I'd love for someone to offer a 'hey, you have this, and we can do this for you'.. I'm ok with any time that will come in between that, even if it's a lifetime.

 

[Aleser]

if canes, braille, alternative (tactile or auditory) techniques are available, why not use them? at the same time, if someone WANTS to use their residual vision, that's entirely up to them, but i don't think it should be at the exclusion of relying on other senses like hearing and touch.

Absolutely. We all know that legally blind adults who know braille are far more likely to be employed. From practical experience, I'm sure you know that blind people involved in organizations like the NFB with a positive view of blindness tend to be, in general, happier people with a much better set of coping skills for blindness challenges. It makes no sense that we limit people- especially school aged children- with the excuse that their are other options, like protective techniques instead of full cane use, books on tape and computers with screenreaders instead of braille or large print instead of braille, so on and so forth, being used to deny blind people the right not only to do something the easiest and fastest way possible, but in a way that also encourages a level of self acceptance- that having partial sight does not make you sighted- and trying is a sure way to end up miserable.

 

[Hear Again]

Unfortunately, I don't have a diagnosis for either the common hits like CTS all the way down to the rare disorders. I do have a physical diagnosis for being weaker-in-general, but it does not explain specifically having more difficulty moving a finger or tightening my hand than, tightening my foot or moving say a knee or ankle, hip or head. As far as a reason/diagnosis goes, 'it's idiopathic' (we don't know why that's happened or what's happened, really) doesn't count for much.

Relatively, it's a limitation I struggle with much less than deafblindness- or anything else wrong with my defiant little body ! It was a lot harder to deal with before I really discovered that there were things I could do beyond looking for an answer- actually coping with the reality(a less than novel concept that neither I, nor my family, seemed to connect very well to this particular limitation).

After that, very simple things like modified grips on door handles and (finally!) silverware I could hold became (and have remained) things I don't think too hard about often. our light switches are now the large ones that can be clicked on the top or bottom to indicate on or off, so i can push on or elbow them instead of fiddling with a switch.

Door handles in public are still a pain in the butt, and the machine at the grocery store that spits out your correct change into a deep circular metal 'dish' (so you scoop it out) makes me very unhappy... aside from that, no earth shattering problems.

While I'd love for someone to offer a 'hey, you have this, and we can do this for you'.. I'm ok with any time that will come in between that, even if it's a lifetime.

my doctor recommended surgery for my cts as soon as possible, but i asked her if i could try physical therapy first. she agreed and prescribed 6-12 weeks, so i'll see if that has any effect and if it doesn't, then i'll have to proceed with surgery. i'm hoping my physical therapist can give me some good recommendations as to the various adaptive techniques i can use around my home to help ease my cts. as for a diagnosis, i'm glad i have one and that it's cts instead of arthritis because i know the former can be successfully dealt with even if it will take some time. i originally thought i might have arthritis, but at any rate, i'm glad i know what's causing the pain, etc. in the first place.

 

[Hear Again]

Absolutely. We all know that legally blind adults who know braille are far more likely to be employed. From practical experience, I'm sure you know that blind people involved in organizations like the NFB with a positive view of blindness tend to be, in general, happier people with a much better set of coping skills for blindness challenges. It makes no sense that we limit people- especially school aged children- with the excuse that their are other options, like protective techniques instead of full cane use, books on tape and computers with screenreaders instead of braille or large print instead of braille, so on and so forth, being used to deny blind people the right not only to do something the easiest and fastest way possible, but in a way that also encourages a level of self acceptance- that having partial sight does not make you sighted- and trying is a sure way to end up miserable.

all of the things you've mentioned above are exactly why i wouldn't want to have partial sight (no offense to you or others who do). i just don't think i could cope with knowing when or how to use it -- especially if i were a very low partial in which case it would make more sense to function as if one were totally blind.

 

[Aleser]

my doctor recommended surgery for my cts as soon as possible, but i asked her if i could try physical therapy first. she agreed and prescribed 6-12 weeks, so i'll see if that has any effect and if it doesn't, then i'll have to proceed with surgery. i'm hoping my physical therapist can give me some good recommendations as to the various adaptive techniques i can use around my home to help ease my cts. as for a diagnosis, i'm glad i have one and that it's cts instead of arthritis because i know the former can be successfully dealt with even if it will take some time. i originally thought i might have arthritis, but at any rate, i'm glad i know what's causing the pain, etc. in the first place.

My insurance wouldn't cover therapy in this instance because it's all too easy for them to insist that nothing is wrong. I was not able to pay for very much out of pocket, but I did get enough (that I've kept working on at home) to get better with holding things and not dropping them, which has saved me from the wrath of always using lidded cups.. also, i found out where/how i could get various in home modifications.

In any case, I hope the physical therapy works out for you- or, if need be, the surgery. Do keep me updated in that respect.

 

[Hear Again]

My insurance wouldn't cover therapy in this instance because it's all too easy for them to insist that nothing is wrong. I was not able to pay for very much out of pocket, but I did get enough (that I've kept working on at home) to get better with holding things and not dropping them, which has saved me from the wrath of always using lidded cups.. also, i found out where/how i could get various in home modifications.

In any case, I hope the physical therapy works out for you- or, if need be, the surgery. Do keep me updated in that respect.

i've been using lidded cups lately as well because i have a tendency to drop things when using my left hand.

in fact, i accidentally broke one of my glass plates two weeks ago after drying it and trying to put it into the cupboard.

it's too bad your doctor couldn't have come up with *some* kind of diagnosis to get your insurance to pay for pt -- such as a pinched nerve.

at any rate, i'm glad you were able to get enough pt to help you make some adjustments.

as for various in-home modifications, what would they be? i'm unaware of anything i can do to modify my home so i can ease my symptoms, but i'm sure that's something my physical therapist will discuss with me.

i will be sure to let you know how the pt goes as well as surgery, if i decide to go that route.

 

[Aleser]

as for various in-home modifications, what would they be? i'm unaware of anything i can do to modify my home so i can ease my symptoms, but i'm sure that's something my physical therapist will discuss with me.

Well, since your symptoms and causes seem to be fairly different from mine, i don't know how much i can offer you in particular.

If you can afford it, a one handed keyboard is the first thing i can think of off the bat. enablemart has a one-or-two handed (it can be used as both) keyboard for a fairly reasonable 150$. They also sell extended zipper tabs as well as button-closing aids.

An electric can opener can be had at almost any store that sells small kitchen appliances, as can grips for jars. Door knob grips like Maddak, Inc.   Aids for Daily Living can be purchased (as I did) or scrapped together with stray rubber. Adding a grip to your key might be unattractive, but it will both make finding your keys easier (if you keep half as messy a purse as I do) as well as executing the task of getting the key in the door and twisting it. Likewise, lamp grips (from enablemart and many home health stores) are the difference betwen a pencil sized gripping surface and a can-of-peas sized gripping surface.

one thing i cannot stress enough is adding a pan holder to your stovetop, which can save you from major accidental burns. This will stop the pan from turning around if you stir one-handedly and provides some protection from the pan falling off the stove, unless you pull it straight back so that it's out of the holder- any side-to-side motion wont dislodge it.

using a suction-based scoop bowl is helpful in both preventing you from moving around the bowl with your spoon or fork and will also provide a surface to easily lift food into whatever you're eating with. Since they're plastic, they'll survive falls.

wide gripped spoons and forks are great, but very expensive. Using a snap-on modifier meant for any spoon or fork may help, but in the end it's up to you if that's worth it.

Regarding lidded cups, the best invention on earth is a sports bottle with the mostly one-way valve, so when you suck on it it'll open up and pull back in air, but once you're done, you don't have to snap the bottle back shut- you can tip it over or send it flying and it wont spill. It beats fiddling around with capped sports bottles!

those are just the handful of suggestions i can offer looking at- i'm sure you can find yourself plenty more in regards to whatever you have difficulty with, especially working with your therapist.

 

[Pinky]

Raise my hand up. But I am not totally blind yet. I has usher syndrome since I was born.

 

[Hear Again]

Well, since your symptoms and causes seem to be fairly different from mine, i don't know how much i can offer you in particular.

If you can afford it, a one handed keyboard is the first thing i can think of off the bat. enablemart has a one-or-two handed (it can be used as both) keyboard for a fairly reasonable 150$. They also sell extended zipper tabs as well as button-closing aids.

An electric can opener can be had at almost any store that sells small kitchen appliances, as can grips for jars. Door knob grips like Maddak, Inc. * Aids for Daily Living can be purchased (as I did) or scrapped together with stray rubber. Adding a grip to your key might be unattractive, but it will both make finding your keys easier (if you keep half as messy a purse as I do) as well as executing the task of getting the key in the door and twisting it. Likewise, lamp grips (from enablemart and many home health stores) are the difference betwen a pencil sized gripping surface and a can-of-peas sized gripping surface.

one thing i cannot stress enough is adding a pan holder to your stovetop, which can save you from major accidental burns. This will stop the pan from turning around if you stir one-handedly and provides some protection from the pan falling off the stove, unless you pull it straight back so that it's out of the holder- any side-to-side motion wont dislodge it.

using a suction-based scoop bowl is helpful in both preventing you from moving around the bowl with your spoon or fork and will also provide a surface to easily lift food into whatever you're eating with. Since they're plastic, they'll survive falls.

wide gripped spoons and forks are great, but very expensive. Using a snap-on modifier meant for any spoon or fork may help, but in the end it's up to you if that's worth it.

Regarding lidded cups, the best invention on earth is a sports bottle with the mostly one-way valve, so when you suck on it it'll open up and pull back in air, but once you're done, you don't have to snap the bottle back shut- you can tip it over or send it flying and it wont spill. It beats fiddling around with capped sports bottles!

those are just the handful of suggestions i can offer looking at- i'm sure you can find yourself plenty more in regards to whatever you have difficulty with, especially working with your therapist.

these are excellent suggestions. thanks, aleser! i'm definitely going to look into all of them.

 

[shel90]

i couldn't agree with your post more, sabs!

as for a blind person trying to read something they can't see (or have significant difficulty seeing), you'd be surprised how many vision teachers emphasize the use of residual vision to the extent that a legally blind person experiences headaches and must hold the material they are reading inches from their face. i think that's ridiculous. i wish some of these vision teachers could look through the eyes of their legally blind students so they would have a better appreciation of how difficult and inconsistent it is to rely on poor vision.

I can relate even though I am not blind. Growing up with a bilateral severe-profound deafness and having never been taught ASL, I had to rely on lip-reading 99% of the time to communicate and it put a heavy strain on my eyes causing me extreme fatigue and sometimes, headaches. Also, lipreading doesnt give 100% access to communication like ASL does. I think it is ridiculous in both situations. Why force the kids to use their weakest sense to communicate or read?

 

[Hear Again]

I can relate even though I am not blind. Growing up with a bilateral severe-profound deafness and having never been taught ASL, I had to rely on lip-reading 99% of the time to communicate and it put a heavy strain on my eyes causing me extreme fatigue and sometimes, headaches. Also, lipreading doesnt give 100% access to communication like ASL does. I think it is ridiculous in both situations. Why force the kids to use their weakest sense to communicate or read?

i agree. in fact, when i wrote that post, i was thinking about you and how forcing legally blind children to use their residual vision is similar to what you experienced growing up in an oral-only environment. it's a shame blind and deaf children are forced to use a sense that provides severely limited access to visual and auditory information.

 

[LuciaDisturbed]

cool! then by all means, ask them to purchase the original perkins.
it will last you for *years*. i don't even have mine cleaned on a regular basis (since i always keep it covered) and yet it still works perfectly after 33 years.

33 years is a really long time. Is the original Perkins made out of metal? Is it heavy? I can't really tell if it is metal from the picture cause the quality of the picture is grainy.

Both my TTYs did not even last 6 years. Wish they lasted longer like your Perkins.

 

[sequoias]

33 years is a really long time. Is the original Perkins made out of metal? Is it heavy? I can't really tell if it is metal from the picture cause the quality of the picture is grainy.

Both my TTYs did not even last 6 years. Wish they lasted longer like your Perkins.

Since there isn't much demand to make products for blind people, so they make them really slow and they charge a lot for it hence the quality control is better. If they make so many things, quality control generally goes down.

 

[LuciaDisturbed]

all blind and deafblind related technology is expensive. we're a small market and therefore companies can get away with charging exhorbitant prices which they *know* the blind and deafblind will pay because they don't have any other choice.

Also probably because the deafblind equipment seems more complicated to make, therefore it costs more to manufacture these products, right? At least it looks that way to me. Deaf-related technology seem very simple compared to deafblind technology.