[Blind-rollers] New Member and Question
Erica Cole
ejcole at fmail.co.uk
Sun Aug 8 18:24:13 UTC 2010
Hi Jewel
There is a community on Livejournal called GDHAW (guidedog handlers all
ways) which is affiliated with Guidedogs for the Blind (am I right thinking
that that's what GDF stands for?) I'min the UK and we only have one guidedog
organisation here.
I finally won with my doctor recently and they are referring me to get a
wheelchair. The one I use at the moment is ropy at best, not the right size
and very uncomfortable. Still, its better than needing to sit down every
few minutes and not being able to go anywhere.
I'm sorry you're having such a shitty week. I've learnt not to underestimate
my condition because it's so darn changeable.
Your local O and M person or place sounds like a useless waste of space.
Definitely go further afield and if you can get into a specialist centre for
the blind then this will be well worth it. I'm stumbling along on my own at
the moment because I'm unaware of anyone that can give a wheelchair userO
and M in this country.
My local authority (government agency) only will give you 6 weeks of Rehab
training and then you're on your own.
If you use MSN, AIM or Skype, feel free to write to me offlist if you want
to talk more and I'll give you the details.
Best
Erica.
---Original Message-----
From: blind-rollers-bounces at nfbnet.org
[mailto:blind-rollers-bounces at nfbnet.org] On Behalf Of Jewel S.
Sent: 07 August 2010 11:27
To: Blind wheelchair users list
Subject: Re: [Blind-rollers] New Member and Question
Hi Erica,
Thanks for the welcome and suggestions. I considered having someone carry my
stuff...I don't tink it's practical in the end because I have learned from
hard experience that the only person I can truly count on to help me is
myself. Other people will offer help often, but I have learned time and time
again that they rarely do what they say they will, so I need to rely on
myself and do things I know I can do without help. This is my experience
since I was very little, having grown up in a dysfunctional family with an
abusive mother, having been disappointed by people time and time over the
years, and still finding myself trying to accept that people want to help,
only to be let down once again. If I let someone carry my stuff for me, what
will happen when they don't show up one day?
The only thing I have come up with that doesn't involve a wheelchair or
walker is the guide dog I plan on getting next May/June. I plan on going to
GDF (almost done with the application, just need to get my refrences to
finish up), and they are willing to train my guide dog to also use a balance
harness. They can also train my guide dog to guide with me from a
wheelchair, which I know will be needed for short periods of time, such as
at Disney World next year. Once I have a guide dog he/she will be mobility
aid, support for balance, and traveling companion all in one. Right now I
have my white cane and my support cane, but with a guide dog, I'll have only
one hand needed for my mobility aid, as long as they train my dog to be on
my right side.
If they train him/her on my left side, I will still need a cane on the right
because I lean so far to the right that's the way I will fall when/if I do.
GDF says they are willing to train a dog to the right side if it is
necessary, and I am sure it will be necessary...what's the point of the
balance harness if I'm going to end up falling the other way and may not
have enough balance to force a lean to the left?
I have been dealing with doctors for seven years, not quite ready to give up
on them yet. But in the meantime, I am doing things on my own.
I am trying to exercise daily for about 15 to 30 minutes. I try to keep to a
low-glucose diet (easy to do with a diabetic boyfriend!) and am trying to
encorporate gluten-free meals into my diet (suggestions from a friend with
fibromyalgia who is doing incredibly well for having had fibromyalgia for
several decades). I also make sure to take a nap every afternoon between
3:30 and 4pm, for half an hour to an hour, depending on how I slept the
night before. Like, I'll probably take at least an hour nap today because I
have slept horribly tonight...I'm not usually up this early, really.
Have you ever used a white cane while using a wheelchair? I have heard that
the O&M is completely different. My local O&M instructor said it is too
difficult, that I couldn't do it. So I know if I were to start using a
wheelchair, I'd have to go elsewhere for O&M instruction. It may be just the
excuse I need to go to the Louisiana Center for the Blind, which I want to
go for intensive Braille classes, too (I read 50 wpm one-handed, and want to
learn two-handed). I may go that route if my doctor agrees that a motorized
wheelchair would be appropriate for me to use part-time. I guess I'm getting
used to the idea, especially since this week has all been bad days,
struggling to get out of bed and go places every day of the week. I'm used
to one or two days a week being bad days, not the whole week.
Do any of you use a wheelchair and work with a guide dog? I know one person
on the NAGDU list who is a guide dog handler and a wheelchair user. What is
that like? Does it work well for you?
~Jewel
On 8/6/10, Erica Cole <rebellion220 at hotmail.com> wrote:
> Hi Jewel.
> I too have chronic back, shoulder and hip pain, but I've found since I
> told the medical profession to stuff itself (wasn't getting any
> support anyway) and got myself a wheelchair, I can get a lot more
> done, am not in so much pain and feel I can slowly get on with my life.
>
> I'm really sorry about your college woes, I used to carry a rolling
> case before I had most of my physical probs, but Ihaven't tried it
recently.
> When I'm going away, I sit in my wheelchair, sans footrests, put the
> case between my feet - handle pointed up to my chin and steer as usual
> - rather blindly in fact - with my arms on the rims.
>
> The only thing I can think of is if you can get a frien to carry your
> things to enable you to concentrate on walking etc. I know its not
> ideal, and you may not even want to do that kind of thing considering
> your independence, but that's all I can think up.
>
> Welcome to the list by the way.
> Best,
> Erica in the UK
> -----Original Message-----
> From: blind-rollers-bounces at nfbnet.org
> [mailto:blind-rollers-bounces at nfbnet.org] On Behalf Of Jewel S.
> Sent: 05 August 2010 03:38
> To: blind-rollers at nfbnet.org
> Subject: [Blind-rollers] New Member and Question
>
> Dear list,
>
> Hello everyone! My name is Jewel. I am 25 years old and live in
> Raleigh, North Carolina. I posted a question to the NABS (student
> division) list, and they suggested this list to me. If I had realized
> it was here, I would have joined long ago!
>
> So, a bit about me. Before I lost my sight, I was a nanny (both
> live-in and live-out). When I lost my sight due to a chemical burn
> (drain cleaner splashed in my face), I lost my job as a nanny, and
> private employees of families are not covered by the ADA. So, I
> decided I needed to find a new profession and am going back to school
> in the fall to become a TVI (teacher of the visually impaired).
>
> So, like I said, I lost my vision due to a chemical burn. It was
> 20/70, but then secondary glaucoma set in and brought it down to its
> current, which is 3/350 in the right eye and some light perception in
> the left. But I'm going to back up to discuss my physical condition,
> the main reason I joined this last after all.
>
> Ever since I can remember, I have had physical problems. I could never
> run without twisting an ankle, hurting my back, or hurting my knees. I
> thought I just wasn't athletic. I was raised Catholic, and I remember
> as a kid squirming as I kneeled at the pew to make my knee crack
> because it would cramp until it cracked.
>
> In 2003, I joined the Army, but was unable to pass the physical tests
> for two reasons: my knees do not lock in place, so they wouldn't count
> my push-ups because my knees dropped a fraction of an inch every time,
> and I couldn't run...when I did the mile run, toward the end, my knee
> completely gave out and I fell on the ground. The drill sergeant of
> course thought I was being lazy and yelled at me, and I walked on a
> knee that wasn't working right until the end (about a hundred yards).
> While at Fort Jackson for basic training, while still in "intake" or
> whatever, I developed tendonitis so bad I was put on a dead man's profile.
> If you know anything about the military, dead man's profile means no
> exercise, no walking, stay in bed and do nothing, and we'll bring your
> meals to you. My ankles and my knees would not hold my weight, period.
>
> Ever since then, I have slowly been deteriorating. It started with my
> right knee and hip and only one bad day a month approximately. Then it
> spread to my right arm and shoulder, and then to my back, then to my
> left shoulder, and now it is all over my body. It's hard to describe,
> though. It's like constant pulsing of pain in all my joints nad
> muscles. My muscles get so tense they are almost as hard as bone
> itself, and my joints, especially my elbow, shoulder, and jaw,
> sometimes lock. I have severe tremors at times, and the headaches come
> and go. Earaches also come and go. But my back, hips, knees, and wrists
hurt non-stop.
>
> The worst thing for me is walking. When I walk, I use my white cane
> and my support cane, but I have such poor balance that sometimes I
> have to use both the support cane and my boyfriend's arm just to stay
> walking straight. I stumble, I fall, and my right foot drags to the
> point if there's a crack in the sidewalk, my right foot will get stuck
> on it because I can't lift it even that little bit.
>
> My feet turn outward, and my chiropractor told me that my head is
> literally on crooked. I have two slipped discs in my neck (at the
> top), and my skull, because of these slipped discs, is actually on
> sideways, leaning to the left. My neck is also misshapen in that it
> has only an eleven degree curvature instead of the normal forty-five.
> My back is misaligned, my hips are off to the point that my right leg
> is made to be half an inch shorter (not really, but the hip lifts it
> up half an inch more than the left side), and my wrists have bones out
> of place (my left wrist was broken when I was a kid and didn't set
properly).
>
> I think worse than all of this, though, is that my condition, after
> seven years of doctors and tests and physical therapy and drugs, is
> still undiagnosed. The diagnosises have included a tonsular
> herniation, a chiari 1 malformation, multiple scelorosis, lupus,
> rheumatoid arthritis, osteoarthritis, chronic pain, and chronic
> fatigue syndrome. All of these have been turned down (except the
> general diagnosis of chronic pain and chronic fatigue syndrome) and
> the latest possibility is firbromyalgia, which my father had in
> connection to Desert Storm Syndrome, so they thnk it's a good possibility.
But seven years and no diagnosis is really getting to me.
> I've been told I'm faking, I have a low pain threshold, I'm asking for
> attention, and that it's not really so bad. I've been told that
> nothing can be done and that I should just live with it. I've been
> given Oxycodone, Percocet, ultracet, Rizalle (can't spell that one),
> prescription ibuprofen, muscle relaxants, and pretty much anything
> short of morphine and tranquilizers. I've even gotten steroid shots and IV
pain medicines.
>
> My doctor has suggested that I start using a walker or wheelchair, and
> I am really pushing against it. I know it's not so bad to be a
> wheelchair user, but I want to walk...I worry that using a wheelchair
> will mean less and less walking, more and more deterioration. I worry
> that people will be even harder to deal with, and that I will have to
> learn O&M all over again when it was so hard in the first place
> because of my memory problems and bad days when I get completely
> confused, kinda like I'm in a fog. If O&M was so hard for me when Ic
> ould walk, how much harder will it be when I'm in a wheelchair?
>
> I'm not worried about how it'll affect having a guide dog...I'm going
> to get a guide dog next summer sometime hopefully, and Guide Dog
> Foundation has said that they will train my dog to work with a
> motorized wheelchair if they need to, so that won't be a problem. The
> dog will also be trained with a balance harness for when I walk, because I
have so much trouble with that.
>
> So, that's all about my problems...now on to the inquiry.
>
> I have two hands, of course...I have one hand for the white cane, one
> hand for the support cane, and...one hand for the rolling backpack?
> Nope. Dang it! I need a third hand. I'm not allowed to carry more than
> about five pounds on my back or shoulder, so I can't carry the
> backpack. It wil lhave my laptop (5 to 7 pounds), a refreshable
> Braille display, an extra keyboard (laoptop keyboards cramp my hands
> badly), and a few other items...not books, not binders. Those stay at
> home. But that's going to be about 10 pounds minimum. Now, I've tried
> to pull my backpack with the hand that holds the cane, but I stumble
> and trip because I can't put enough weight on the support cane. I've
> also tried carrying it in the hand using the white cane, but I can't
> sweep the cane well and miss obstacles (I ran into a pole that way
> *blush*). I spoke to the college's disability office, and they did not
> know what to suggest. I asked the student division people, and their
> suggests were to go without the backpack (need the laptop and can't
> carry it, sot hat's out) or use a wheelchair (really don't want to, and I
don't know if I could get one anyway).
>
> So my question is, is there anyway for me to walk with two canes and a
> rolling backpack? Does anyone have any creative solutinos? I was
> thinking a rope attached to the t-grip and wrapped around my wrist or
> forearm, but that would put too much weight on wrist or forearm and
> would hurt too badly. For the same reason, a waist harness would not
> work because of my back and hips, and anything on my harness would be
> too much for shoulders and back. I'm just totally stumped here. Does
anyone have suggestions?
>
> And that's the end of my ever so long e-mail...
> --
> ~Jewel
> Check out my blog about accessibility for the blind!
> Treasure Chest for the Blind: http://blindtreasurechest.blogspot.com
>
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--
~Jewel
Check out my blog about accessibility for the blind!
Treasure Chest for the Blind: http://blindtreasurechest.blogspot.com
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