Has anyone here ever prepared for a disability?

[politicat]

I'm going blind. We thought it was going to be slow (25+ years) but recent diagnoses have changed that outlook to between 10 and 15. For now, my vision is fine with correction and medication, and I don't mind wearing glasses, but I really don't have a lot of time left. I am hoping that some treatments will become available, but I'd rather be prepared to weather a storm than be caught flat-footed in one.

I know that I need to learn braille and start collecting braille materials because they're really expensive and the better prepared I am, the better off I'll be long-term. But that's about it.

Has anyone here had the experience of preparing for pending disability? What are the things you wish you'd known to think about?

[SheilaT]

1. Contact various organizations

that work with the blind.

If you are an adult, you may not be able to learn braille. I understand it's something that is difficult if not impossible to learn later in life. However, you will be eligible (once you are legally blind, which is a specific medical diagnosis as you probably already know) for free talking books, recorded editions of such things as Time and Newsweek.

My younger brother became legally blind at age 49 from diabetes, and he had very little warning. He went from normal vision (nearsighted and wore glasses/contact lenses) to legally blind in three months. The one good thing about blindness is it's the one disability that you don't have to spend years trying to convince the government that you're entitled to disability because of the condition.

Other than that, losing your vision totally sucks, and any kind of disability is not to be wished for. Good luck to you in figuring out how to weather this.

[Kutjara]

2. I have muscular dystrophy.

Its one of the non-lethal forms and I was only diagnosed five years ago, but it has certainly taken some adjustment to get used to the idea that I'll become progressively more disabled as the years go by.

For me, the adjustment was less about the physical and practical side of things and more about the emotional. No matter how resilient you think you are, you have to be prepared for periods of depression and hopelessness when the fact sinks in that this is a relentless process that nobody can do anything about. The strength and capability I have today is the most I will ever have.

I spent about three years tripping and falling every time I encountered uneven ground before I finally swallowed my pride and bought a walking stick. Now, I'm more mobile than I've been in years. I wish I'd just gone ahead and got the thing when I first needed it, instead of feeling the need to pretend to the world that I was still 'able.' My vanity still played a part, of course, so I got a beautiful antique silver and ebony cane instead of some aluminum and plastic hospital job. I occasionally get remarks from halfwits who think the cane is a mere affectation, but I feel so much better about the fact that the purchase was my choice and that the cane makes a statement about me, rather than just my disability.

I suppose my best piece of advice, therefore, is to take positive steps in the management of your condition. Stay informed about medical advances. Join online discussion groups of fellow sufferers, find the best products and technologies to use and use them early, so you're comfortable with them when you finally have to rely on them. Use the resources available to get the emotional and practical support you need. I suppose, most of all, don't let the disability define you. Your self image will necessarily have to adjust over time, but don't give the disability a disproportionate vote. You are more than your diagnosis.

I hope this helps. It's the first thing that came off the top of my head so it's a bit disjointed, but still expresses the way I feel about what happened to me.

Best wishes,

Kutjara.

[pansypoo53219]

10. i feel ya there

as my disability has progressed(nice and slow), i started doing estate sales for exercise, ebayables and even tho i don't need them yet(except in the wild) 2 walkers, 1st one w/out wheels and then one with both for $4. and got a few cane to use witch i have started, but my favorite, which seems to get comments in a just a plain wooden one that a long time ago was painted baby blue and the paint worn on on the branch handle. only a couple bucks. heck, cost more than the very old detroit map that i sold on ebay for a handsome profit.
now if only walker's could be a pretty as canes.

[mtnester]

29. I will be going in August for a final determination of an MS diagnosis

I am trying not to have any emotion or thought on it until I learn for sure the lesions found in an MRI (neuro) are in fact an MS diagnosis.

My first thought was to find a support group, even before final diagnosis. I learned from my mother's passing that support in most any positive form is a help.

[dysfunctional press]

3. i would have stayed in the construction union...

and i could have gotten a decent pension.
my spinal condition was mis-diagnosed as something else for 15 years- had i known that what i had was a disabling condition, and not just a painful nuisance, i wouldn't have changed careers to something more sedentary- which actually made things worse physically anyway.
i had no disability insurance, and we didn't have a rider on the mortgage...and then when i was finally granted disability, i found out that a now bankrupt and defunct company that i had worked for for 2 years 20 years earlier had never paid the money they deducted from my check into social security- i had no recourse, sol, and my lifetime ss earnings were reduced by over 12%(lotsa big money overtime during those 2 years)- so my benefit check is that much lower every month.

yeah, i'm bitter...

but at least i have my eyesight- that really sucks, dude.

it's one of my bigggest fears in life...i knew a girl in college who asked me once- if i had to choose, would i rather be deaf or blind- i said deaf, by far...she, being a musician(violin) said that she would prefer to go blind...i thought she was NUTS.
but- from what i understand(and i could be mistaken) people who go deaf are more likely to go insane, as opposed to losing other senses....anyone know for sure?

[politicat]

9. Chick, not a dude, and I hope you can get a legal recourse.

That sucks that your company failed you in so many ways and that the feds behave like such asshats about it. You have my best wishes if you decide to sue.

The more I think about it, the more serene I become with the process. And yes, being deaf at this point would be far worse for me than blindness. And since I'm already an utter nutter, the trip to insanity will be a very short one. :P I think I grew up knowing that it would happen eventually - this runs in the family. That I'm getting hit as young as I am is a bit odd, but not entirely out of the ordinary.

[dysfunctional press]

26. no legal recourse...nobody to sue.

sorry about the gender mix-up...i should probably check profiles when i'm unsure.

as for the company i had worked for- they're long gone- i think that the ss said that if i still had my check stubs, that i might be able to get credited...but unlike my father, i'm not the kind of person who hangs onto, and files check stubs for multible decades...live and learn, i guess -although i don't know when that lesson is really ever going to come in handy again.

one good thing about being labelled permanently disabled- it's helped me to achieve my main goal in life- i don't have to have a boss, OR be a boss.

my time is comepletely mine.

[rwenos]

4. Multiple Sclerosis

My wife has had it for 25 years. We've always known it might put her in a wheel chair, or worse. So far all she needs is a walker. I'd say the advice about joining organization is good, because they are repositories of knowledge. However, based on our experience, I'd spend less time on those organizations' chat rooms than their reading libraries -- my wife has an active distate for listening to others complain about this miserable disease. She says it brings her down.

I'd say learn what you can about Social Security disability, because if you manage to get it, it will improve the economic part of your life immenseley.

Also, it would appear finding things that can be accomplished despite one's disability also help. Playing a musical instrument, reading via books on tape. Learn to touch type, or investigate keyboards that can make audible tones, so they can be used without recourse to sight.

Good luck and Godspeed. You are NOT alone.

[politicat]

15. That's what's driven me away from the local support group...

It's worse than Queen for a Day! I don't care about sob stories -- I want to know how to level a cup of flour and find a talking scale and get a haircut that won't leave me looking like I went and played with the weed whacker.

I am so lucky in that my career will translate far better than most - I write, I edit and with any luck, I'll have my doctorate in agricultural economics before I'm totally sightless. As long as I have a driver, basically, I will be able to continue to do what I'm doing, so economically, I'll be in a far better place than most. (And yes, I know how lucky I am on that one.)

I touch-type now, and Mac has a lot of accessibility built in, so we will be staying on the Apple platform. Reading is really where I'm going to hurt - I read extensively and have a massive library that I have no idea what I'm going to do with -- I'm thinking of scanning each volume onto hard drives. At least then, I can get it read back to me.

Thank you for the pointers on SS. That is going to be hell if I have to deal with it.

[eShirl]

20. you could talk with an occupational therapist

They have some great ideas and resources.

[MercutioATC]

5. What's the nature of the problem?

My father is a past CEO of a couple of vision charities. I may be able to get some info from him.

[politicat]

12. Genetic legacies having a big old party on my optic nerves.

I have a fairly aggressive case of low pressure glaucoma, as well as aggressive myopia. So far, I'm doing okay but like I said, I'd rather be prepared. Besides, having notes in code is ALWAYS a good thing, and being able to read in bed without keeping my husband awake.... woot! (incurable optimist at times. If I gotta go blind, at least there are a few up sides?)

It's genetic. Grandmother, great-grandfather, several aunts and uncles. We've been massively involved in vision activism for a century (my great-great-great grandparents helped bring the Perkins method to Indiana). Since it's also neural, and LP, I don't have the option of slowing everything down by bringing down my blood pressure, eating right and exercising.

[Emit]

6. Does your state have a Blind Services or Vocational Rehab Services Office?

When I worked as a Voc Rehab Coord with my State VR office, we shared a facility with the Blind and Visually Impaired offices. Their services included working with clients whose vision was deteriorating. Their counselors worked with clients in their home on independent living skills, preparing for the future, and even providing accommodations with aides like screens to enhance TV viewing, Secondary Audio Programming or SAP, computer viewing and such.

[politicat]

14. Thank you. I'm sure we do....

Though it may not have a budget at the moment. (Don't get me started on Colorado's budget woes...)

We do have a couple of really large facilities for the deaf and blind, and I have some contacts - other therapists - who work with students there. I never even considered the schools since they are geared towards children rather than adults. (Duh.) Thanks again!

[Lib Grrrrl]

7. I'd Start By Contacting

your local Lions Club. They do work for people with vision problems.

[Mojorabbit]

8. Have you thought about a canine companion?

I have seen some amazing working dogs. I have MS and it has been a slow deterioration over the past twenty years. In some ways it was the worst thing to ever happen to me an in other ways the best. I have a whole different outlook on life and what is really important. I wish you the best.

[politicat]

13. I am so not a dog person, and allergic to boot.

I really don't like dogs so we've been thinking about this. I think I'd like to try to get a capuchin, but they're illegal in Colorado. Seeing eye cat is pretty much not going to happen (because the cat's opinion is, if you can figure out the can opener, why should I help you?). I think I could train a goat or a pig to do what a dog does, but everyone I've talked to about my companion farm animals has backed away slowly and called for a psych consult. Maybe if I could have a beagle or a poodle... but I really don't like big dogs, though they love me... :eyesroll:

And the waiting list for companions is really long. There are people who will need such services far more than I will - I have a strong social network, a disability-friendly community, and skills that will translate to a non-sighted career easily - so I'm not so worried on that issue.

[AlienGirl]

16. Have you heard about guide horses?

There are people training miniature horses (the size of a German shepherd) to be guide animals. One major advantage is they live longer than dogs. Here's a link to the Guide Horse Foundation website: http://www.guidehorse.org/

Tucker

[Nicole]

18. Are you sure capuchins are illegal?

Colorado prohibits the possession of non-human primates under statute 35-80-
108 (1) (j) (II) (A). As per 35-80-108 (1) (j) (II) (B) this prohibition
does not apply to licensed zoological parks; research institutes licensed or
registered under the provisions of the "Animal Welfare Act of 1970"; nor does
this apply to the keeping of a nonhuman primate as a household pet by any
person who owned such primate on or before July 1, 1973; or to the keeping by
a disabled person of a nonhuman primate specially trained to assist such
person.

Found that about 1/2 way down the page here:

http://www.animallaw.info/statutes/stuscost35_80_101_117.htm#s108

I hope you can find the help you need.

[politicat]

28. Thanks!

The basic law of no monkeys was what we were working with. i'll be looking into this! Thanks!

[carolinalady]

11. i have scleraderma and had no time to prepare-it is a scary

experience to be suddenly disabled.

[Rainscents]

17. One thing I want to add is...

Make sure you have very good SSI lawyer handy just in case they reject your claim. My understnading is 95% of the claim gets rejected at first try.

[SheilaT]

25. Yes, most SSI disability claims

are rejected first time out, but not blindness. It's the ONE disability they honor readily.

The following information comes from several months as a paralegal intern for an attorney who handles Social Security Disability Appeals cases:
Most claims are rejected because, quite frankly, many of the applicants really could find other work. If you're under 50 and if you have transferable skills, you're highly unlikely to get disability. While blind people can and do work for a living, most of those who do so are blind from birth or a fairly early age. It's quite different from someone who goes blind as an adult, especially if it happens suddenly, as with my brother.

My mother-in-law was legally blind by about age 70, and she had the whole talking books thing. There are also organizations who will send someone into your home to teach you basic low-vision survival skills, such as how to cook.

Keep in mind that a lot of legally blind people may actually have a lot of useful vision, but cannot see well enough to drive or read a book. There's also a world of difference between those blind from a very early age, and someone losing her sight relatively gradually as an adult. My comment earlier about not being able to learn Braille comes from some research my sister did some years back in connection with a movie she was working on as a research assistant. Apparently, the kind of fingertip sensitivity needed to learn Braille fades away in adulthood, although someone who learned it as a child will retain that sensitivity because it's being constantly used.

I expect a search of the internet will give a lot of information. In the long run, a lot depends on just how much useful vision you retain. If you go completely stone blind that's one thing. If you continue to see colors and shapes, it's another. If it's like being incredibly nearsighted, that's yet another.

[politicat]

30. It's one of the reasons I want to learn braille now.

I'm 30, I have good sensitivity and a high level of linguistic ability. Now is the time, rather than waiting. For now, I'm going to learn Braille by sight, since the transition between sight and touch is supposed to be fairly easy.

My problem will be a narrowing field of vision coupled with blur (from the myopia). Driving is the first thing that will go, unfortunately.

[SoKalKyle]

19. I don't know about where you live but....

Here in Long Beach, CA we have a lot of services for the disabled. I am disabled and volunteer at the disability center in our public library. We have all sorts of assistive equipment for physical and visual disabilites. Almost anything can be read to you through a computer. We also have a good set of books on tape that were given to us by the Braille Institue. The BI might be a good place to get cozy with. They may be a lot of help now and when you need them.

The Department of Rehabilitation is also an excellent resource. One of our volunteers is legally blind and has taken advantage of all the DoR has to offer -- they have put her through college for 2 Masters degrees and now she is working on her Doctorate. They also gave her all of the specialized computer equipment she needs for free plus all of her materials for class and will even buy you work clothes she you needs them.

I know you may not be as concerned with the financial aspects but these agencies can be a lifesaver. I have just started trying to go back to college and work and I'm using the Dor and the disabilty center at the local city college.

So, I guess this long-winded answer to your question would be to get in touch with organizations that can help. Volunteer at one! Volunteering is great! It gives you a great sense of pride and accomplishment plus you'll learn a lot -- like who specifically is the best person to talk to at what department or agency.

[madokie]

21. Went from being a well paid concrete finisher to disability in a matter of

weeks. I had noticed my legs and arms weren't the same for a while but never thought it would be PAD as my cholesterol levels were always good and still is. Today I question those cholesterol numbers, do they really mean anything. Good numbers and I barely get around now.

[Philosoraptor]

22. You seem prepared to me, you've got a great brain.

I think it's a personal thing, in other words, only you can prepare, and only you understand what you are going through. Others may think they understand, but only you really do.

It's rough, no matter what. Disabilities happen suddenly, and they happen in slow motion, and people react in similar ways, and different ways.

Some are shocked and some are broken, but to me, you sound prepared, but scared, as anyone would be. And it could be anyone, but that doesn't make it any easier.

I'm philosophically drifting here, but, I think you've got what it takes, plus you have your loved ones who will be there every step of the way.

Best of luck.

[Ioo]

23. Start to LEARN and USE Text Readers for PC...

The PC is your friend if there ever was one. I run a site for disabled gamers (http://www.ablegamers.com) and there are many things out there that will help you still be able to enjoy DU and other great websites....

Look at the PC as you prepair, that is far more a window to your world than print these days.

[politicat]

31. Mac user, but yeah.

Macs have fabulous assistive tech built in, and I'm kind of looking at what I'll need when I buy the next machines.

Web will not be a problem, but I am going to have to work hard on getting Neverwinter nights to work for me....

[Hekate]

24. Our local Recording for the Blind & Dyslexic org does textbooks...

...and very heavy duty material. An article in our newspaper a couple of years back said they even get volunteers from the university to record things like scientific and mathematical texts. You should be able to get what you need that way.

Our community college's disabled students services center includes computers that enormously enlarge the print in books so those with very low vision can read them. There's also some very sophisticated software out there.

Occupational therapists and rehab specialists are knowledgable in teaching you how to navigate in your own kitchen and your own home. You will be able to prepare meals and do other accustomed tasks, you'll just have to learn new ways of doing them. This is one area that you can actually plan to work on henceforth, because your home will need some modification.

I understand your feelings about losing access to your personal library, as mine is very extensive too. But that can happen in a variety of ways. I once met a woman who seemed perfectly able-bodied, but who told me she'd had a stroke that left her unable to read. The rest of her had recovered, but her ability to pick a favorite book off the shelf and scan it was gone.

I admire that you are being proactive and fairly calm about this very distressing turn of events. I wish you all the best. :hug:

Hekate

[politicat]

32. Calm... well...

Here, I can be. And it doesn't do me any good to be a basket case on it - it just makes the situation worse. I may not like it, but the inevitable is the inevitable and nothing changes that. But there have been some tears and rage. Fortunately, I do have a solid support network.

Thanks for the information about the readers. Since I can still do that, and there is an agency locally that does so, I think I'll be doing that here in the very near future.

Thanks again!

[Hekate]

33. Some tears and rage are completely appropriate...

... and you've allowed yourself enough space for that it seems. I can relate to what you're saying because you sound like my family -- there's a time to yell "oh shit" and a time to override that with reason and logic. Those modes can take turns over and over. It's really hard to yield independence and learn to ask for help; from what you've been saying here it looks like you've already figured out that asking for help isn't the same as being helpless, and that inter-dependence is what family and community are all about. :hug:

Hekate

[napi21]

27. I haven't but a close relative went through the same as you.

He had childhood diabetes, and was told while in his 20's that he would probably loose his sight one day, but they wouldn't give any estimated time frame.

His was newly married, and he and his wife decided the best thing he could do was choose a prefession that he would be able to do, even if he was blind.

he obtained a Doctorate in Psychology, and established a small privat practice near where they lived.

He is now 54, and has been legally blind for about 6 years.

The Association for the Blind has been a tremendous help. They provided him with a computer system with screen reading technology, and a HUGH monitor (36" I think). He still has very low vision in at least on eye and with that large screen, he still manages tooperate his practice part time.

Two years ago, they provided his with a Service Dog, who he has ust fallen in love with! She give him the ability to take the bus back and forth to work, and navigate almost anywhere!

I suggest you contact your local Association for the Blind. I think they will be able to guide you much better than anyone else.

Good luck to you. We'll all say a prayer for you.