Scared Silly

[hobbit]

Lucky me, we moved from a rural area where I could hobble to everything in town, (but there wasn't much in town lol) to an urban area.

I wanted someplace with public transportation because I'm sick to death of asking for rides. However now I'm scared silly! It's a large city and I'm legally blind. My question is, I often have to rely on my super cool cane but should I get one that is for the blind when using the bus? I am fortunate that the bus system will help train me to use public transportation, but I'm scared of getting lost (can't read the bus numbers!). My family is wondering what I'm waiting for I'm too embarrassed to tell them I'm afraid, silly me

Thanks,
Anna

[MSer102]

Your local Braille Institute can help you with learning how to get around when you are visually impaired. They also have classes on getting around and getting things done inside your home and yard.

They might also be able to help you with getting a monocular or telescope for reading bus numbers and street signs. You can use binoculars if you want to but they're bigger, heavier and more conspicuous than a monocular or telescope.

The Braille Institute can also help you with magnifiers for reading.

I brought up the Braille Institute first because their services are mostly free. They have been around a long time and are funded well and generally have nice facilities. They have people on staff who do things that occupational therapists who specialize in helping visually impaired people do. It can be hard to find OTs who have that kind of training. And again it's free.

There are also some cities that have centers with free services that they call "low vision" but they can be pretty bare bones with minimum services staffed by volunteers with no training. So if there's one of those centers near you you have to know what you are and aren't getting if you go there.

You can also get visual aids from an optometrist or a low vision clinic. Cities with large populations sometimes have independent low vision clinics, optometry schools have them, and many large medical clinics and "eye institutes" have them. Those are all "fee for service" places. Medicare and regular medical insurance don't pay for low vision services or low vision devices.

If your state still has money in its Medicaid program, Medicaid might pay for some services and non-electronic visual aids.

There's no reason you should have to try to travel without a telescope or binoculars to help you see bus numbers and street signs.

As far as getting a white cane for the blind when using the bus, it's important to remember that those are for navigation they aren't for support. So if you need a cane for support it will be awkward trying to manage a navigation cane too.

Plus a lot of people including some low vision professionals recommend NOT traveling with a white cane for the blind if you can get by without one because it can be an invitation for people to rob or assault you because they know you won't be able to identify them by sight.

You don't have to try to do it all by yourself! So I hope you will be able to go to the Braille Institute or a low vision clinic and get some training and visual devices to make traveling and getting around your own house easier.

[Jules A]

Don't be afraid to tell your support system about your concerns. Maybe they can offer you some suggestions.

Best wishes and I hope you are able to find your way around on the public transportation system very soon!

[hobbit]

Thanks

I too was concerned about a blind cane inviting unwanted attention (they do have support blind canes for "low vision"), I have not considered finding a Braille Institute, but now I will.

My Neuro is a pill pusher, that's about it. So I will have to rely on finding some training on my own.

I will conquer this because it will give me back some long lost independence. Thank you all for your advice and support.

Anna

[KatieAgain]

You are a perfect candidate for a Service Dog. Just a thought.

[Debby]

I have a friend who is legally blind since early childhood, yet he has been able to attend college, become a lawyer, serve in our community, raise a family, and develop a photograph memory out of necessity.

I don't tell you that to overwhelm you, only to ask if you would like me to take your question to him for some advice from someone who has lived with this for many years?

[kebsa]

you said the transport system will help train you to use the sytem , i think that a part of that must involve tailoring the training to your particular level of vision, so i would make accessing that training a priority- they will have suggestions on ways you can manage to iD the appropriatte bus. i know that where i live i am near both a major bus interchange and also one of the training centres for the institute for the blind, so i do quite frequently see vision impaired on the buses- some of them who cannot see the bus numbers at all have cards with the route numbers printend on them big enough for the driver to see, and they just find the right stop then hold up the correct card, then when they board the bus they tell the driver what stop they want to get off so they do not have to try to work it out. i am not vision impaired but am in a wheelchair- we have to park our chairs facing the back of the bus for safety reasons so we cannot see up coming stops, so i do the same thing and the driver knows in advance when to deploy the access ramp- most of the drivers are really great and healp without any moans of graons, the very occasional one will seem irritated but it is their job after all, so i still give a smile and a big thanks

As for, concern about drawing ateention to oneself as a target for potential muggers etc- we are in a similar boat with the wheelchair and as long as one takes care not to have valuables on easy display egi would be cautious of carrying items such as my ipad or a laptop in clear view, but the rest is just normal saftey stuff such as avoiding isolated spots at night etc. i have beein in a chair for about 15 yrs and had severe mobility issues before that and only once have been robbed- that was yrs ago when i was leaving the university campus late in the evening, my pre booked accessible taxi had not turned up and i was left in a rather isolated spot on campus, not far from a known problem area- i was near the security guard office but when he very apoligetically had to leave to do a round, a lowlife came up from the river near by and demanded my phone and my cash- i did not argue just handed it over and the guy scrammed! he had obviously been hoping the guard would go- i was shaken at first but not physically harmed and since then if my transport had let me down like that again i would have tried to find a less isolated pick up sppot to wait for the cab. By day when there are laods of people around i think that potential thiefs worry that others would intervene if they did anything- that white can tels potential helpers that you may be vulnerable just as much as it may tell the low lifes but i do understand the anxiety, i take my hat off to you, losing sight or losing the use of a hand, those have always been disabilities that i think would be very tough to over come- i can't imagine having to manage in my own home without wrecking the place if my eyesight failed. Someone else mentioned the service dog, that seems like a great idea to me, have you looked into that?

[hobbit]

I have thought...

about a service dog, but with three cats, a wondermutt, a snake and a tarantula my hands are full.

Debby, I have lost my vision gradually, relearning to read and function at each level, perhaps unintentional your post made me seem unaccomplished. Kudos to your friend for dealing with his life and doing so well. I, however am blind, dragging a leg and live in a world of pain, and can only swallow liquids all due to MS. I still managed to run a house and raise two children. I am not incapable. I have MS.

Anna

[kebsa]

hobbit, i can't imagine trying to learn to cope with losing my vision- kids are very adaptable, even the childs nervous system is more flexible, but at very least they are fearless so cpe with accquired disability amazingly well- we adults are more hardwired, we have to unlearn and then relearn new skills all the time while the what ifs are going on in our heads about what ever caould go wrong- so especially when you move to a new home, a new area etc i am not surprised things seem a bit overwhelming and that is before the MS issues come in!

Is there anywhere you can get some short term local assistance, a community volunteer perhaps to walk with you when ou explore town , to help teach you all the routes you might need, does the blind society have any help to offer- i know in the city, her in australia you would be able to get mobility assistance training to help you leanr your new envirnment but not so sure about rural areas- surely there would be soeone willing to help. i still fee for you, i can't imagine going out my front door if my vision went- it must be very daunting- i know you said no to a service dog, but is the wondermutt able to h elp you at all just on local walks- iknow some people do manage to train their own pooches to act as services dogs but obviously that is hard work and not all wondernmutts are right for the challenge!

take care hobbit, you have been brave enough to make this change now give yourslef some time to adapt to the new envoronment, its going to take longer than when your vision was better

[Cat Mom]

Hi Anna, I don't live in the US but do live in an urban area so this may or may not be any help to you... our transit system gives a free pass to blind/legally blind patrons. Not your main concern but hey, a buck is a buck!

In the last year or so, they evolved to calling out the stops and intersections and a lot of curbs now have identifiable lines carved in for blind canes.

I hope, if there isn't anything like this in place, it won't be long until there is. It has made the difference between being cooped up waiting for a drive and having independence. Once you're up to speed, try a few practice runs to familiarize yourself with your new surroundings before your "bus debut". I wish you well, please keep us posted.

Jen

[hobbit]

Dear Kepsa and Cat Mom

Thank you so much for your encouragement and ideas. Renovations and moving to a new home have been mentally and physically challenging in and of itself. I was knocked back to a complete liquid diet and have been dealing with multiple flares.

It is daunting walking out my front door, I have no clue where anything is, I can't read street signs and the thought of crossing a major intersection makes me break out in a cold sweat. I feel silly, I have braved so many harder challenges in my life and here I am scared to walk out my front door.

I have low vision, as if everything was in a fog, concentrated or trying to focus vision is very painful and triggers either complete vision loss or severe migraines. What I do have ingrained in memory are my children's and my husbands face. They will be forever young. I call them memory snapshots.

I will see if my community offers any services. As for my Mojo, well in his old terrain I knew we were close to home because he would start to lag behind. This terrain is new for him as well, He's not bright enough to train, just bright enough to love!

Much appreciated,
Anna

[Debby]

Hobbitt, I'm so sorry I made you feel bad with my post....certainly not my intention. My friend does not have MS to deal with, so he can focus all his energy on skills and tools to help him with his vision loss.

I lost 85 percent of the vision in my right eye a couple of years ago, so I live in fear that I will also lose vision in my left eye.

I truly am sorry for your pain and struggles, and for adding to your suffering. Please accept my apologies, and know that I care and will keep you in my prayers and have hope that things will improve for you.

[hobbit]

Dear Debby,

On this board I really do not think anyone has ill (pun) intentions. I do appreciate the input of everyone. Tomorrow I pick up my AFO, my neuro is not acknowledging I have ON again until he gets the results of the MRI, 2 weeks after onset of symptom so I'm guessing it's too late for steroids. I know my body, I've had ON more times than I can shake a stick at, my right eye went blind first the left more slowly. Too much stress, new house, renovations, packing, moving, my Marine son returned from his deployment (Yay!), doctors that don't listen, tests, tests, tests, and a foreign environment. I'm worn down and wore out. Doc took me off Rebif now I'm trying to figure out what to do next. I need a break from life for a little while lol.

Peace,
Anna

[Debby]

Oh Anna, I so.....understand that desire to have a break from life. I pray every day that somehow we'll be able to go on vacation, just get away, far, far away so my husband's boss can't call, text, email or Skype him! A cruise to the middle of nowhere is my dream....I don't even care if it goes anywhere. I just want my biggest decisions to be whether to take a country line dance class or go to a movie, or maybe the spa for a massage, or to lay out on deck and have a piña colada and my husband's full attention!!! It could happen!!!