[Blind-rollers] New Member
Holly Alonzo
mommaholly at gmail.com
Sun Jun 14 22:54:52 UTC 2009
Hi there. What dangers are you speaking of not being worth it? That is
what I am wanting to find out, what are the dangers?
Holly
-----Original Message-----
From: blind-rollers-bounces at nfbnet.org
[mailto:blind-rollers-bounces at nfbnet.org] On Behalf Of tribble
Sent: Sunday, June 14, 2009 6:50 PM
To: Blind wheelchair users list
Subject: Re: [Blind-rollers] New Member
Wow, Holly and Agape, your mail makes me count my blessings. I still
have
balance, but a severe to profound hearing loss in both ears. My vision
is
now down to seeing only light and bright colors, and that out of the
right
corner of the right eye, and I am confined to a manual chair due to
orthopedic problems -- but I still feel blessed. Negativity is poison
--
not just unpleasant for people to deal with, but eroding the negative
person
him/herself.
Good luck with the power chair. I confess I'm afraid of them. I had a
sighted friend in college who was in a power chair and accidently went
off
the side of a curb. She had to be scooped up from the street and xrayed
for
injuries. She didn't have the brittle bone problem I have -- if I did
that
with a chair it would be a major catastrophy.
I did try a power chair for a week, and liked it, but the dangers
weren't
worth it to me -- not to mention to damage to my walls and
furniture...*smile*
Anyway, good luck and happy rolling!
--le
----- Original Message -----
From: <AgapeDEW at aol.com>
To: <blind-rollers at nfbnet.org>
Sent: Sunday, June 14, 2009 4:58 PM
Subject: Re: [Blind-rollers] New Member
Holly,
I am especially interested in blind mobility because I was a nurse and
am studying to become a rehab specialist. I myself had to struggle with
mobility issues that actually depressed me enough I was staying in bed
way
too
much.
I am not real familiar with your condition although you have explained
that you are totally blind and have hearing lose also. It sounds like
your gait (walking) has been compromised by your disease also. I guess
I would like to know if this disease is progressive and will your
walking and stability get worse??? How much hearing loss have you
experienced? I have MS/a back injury from previous car accident/and am
legally blind (I see shadows from the left eye so that is a
help-sometimes.... When one eye can see even just a bit...it causes a
perception problem (that is another whole story) and I think something
is further then it is and end up hitting a doorway or my finger.) My
conditions might progress so I prepared myself for no vision at all. I
used a blindfold and that was actually easier to mobilate.
I decided in 2005, that I needed to stop using all my energy staying
upright. My kids and grand kids always saw me walking in an "ape-like
walk"
using a cane with a grim face trying to survive the pain of walking.
By
the
time, I got to my destination, I had to take a pain pill and was
miserable for any event in my life. It was my best decision to get
electric
mobility.
Let me give you some tips I learned.
1. Hand controls: You use your left or right hand to control the
knobs. It is wise to first use the "turtle setting" of the chair when
first learning to use your chair. Always keep your hand above the
controls and
not
hanging off the side or you will break a finger or hurt your hand if you
do hit the molding, etc. going through a doorway. Size up your
doorways. You will need at LEAST 35 inches for doorways and floor
space with a Jazzy electric chair to clear the arm rests which is its
widest part.
Always turn the control to off when you stop or when getting in and
out of the chair. This is VERY important fact to learn. If you leave
the
chair
on, and am pivoting, you can hit controller and your chair will either
run into you or knock something flying while you are trying to pivot
out of
the chair. TRAIN that if you don't turn it off...someone scolds you
lol.
2. Clear your surroundings in your home and learn your "spaces". I am
sure your family members already know that nothing is to be moved or
rearranged without telling you already but I need to reiterate that. I
was sentimental and wanted my China closet where it was because that is
full of
my
good china and crystal but it was right next to the doorway where the
transition strip into the room makes it a rough fit through door. Of
course, I
needed to get that china closet moved, because what good would a
destroyed china closet be if I ran into it and all the crystal came
tumbling out of
the
doors?
Any floor that has more then half inch change going from one room to
another, will have to have a transitional strip put down. If only under
an
inch,
you can sometimes use a thick welcome carpet rectangle (some call them
mud rugs-very course material about inch thick) to help with that
transition. Transition strips can be purchased online also. Check with
local agencies for funding for house adaptation because I am on a
special state program that sends aides to my home daily and they paid
for the transition strips and its installation.
Do not crowd your paths you go regularly. For example, don't put the
family computer and chair right near your path to the kitchen because
invariably family members leave the chair out. It could end up hurting
you
if you
run into it or catch a wheel on that chair. Set your home up for
success. Clear a path that is at least 36-48 inches for you to go
freely to all places in your home. When you get your new chair, try to
get a 'mobility specialist' to work with you in an open area to learn
control of the chair.
It
does NOT come instantly. Plan on getting a few fingers hurt or ankle
bones lol. Make sure your children/family understand that sneakers
(especially men's bulky ones) are not to be left in middle of floor.
Remove all extra furniture but keep durable cornered ones for markers to
be used with your
guide
cane. (I will talk about guide canes next.) Expect that you still
will
have the occasional accidents of running over the cat's tail because
they didn't move fast enough etc. LOL you will hear that if you get em
lol.
3. I use a roller tip guide cane which was purchased by the blind
association for me. I tried the ball cane and it was awkward but the
roller
tip
was perfect for me. Its about 3 inches across and turns like a steering
wheel around in front of me as I check my surroundings. Therefore, one
hand
(my right) is using the control to move forward and backward and the
other hand (a lot of wrist action-expect your arm and shoulders to hurt
during
first
month of practicing.) is used to hold the cane
in a reverse grip with the thumb up. You use your wrist to move the
cane back and forth. Learn to keep the roller tip on the ground at all
times. This roller tip is "clearing" you for access to the new area in
front of you. You will soon learn that it will show you when you get
to a new intersection in a building and even on a busy street will tell
you when sidewalk changes or curb is ahead. It has saved me many falls
down a stairwell etc. I kind of think of my guide cane as a
magic
wand to open up my world to me again. I went everywhere with my
mobility specialist to learn different challenges. In the hospital, I
learned that revolving doors should be avoided by blind wheelchair users
from my
mobility
specialist. I would not take that as a "NO NO" so I learned to use the
slow down button on the revolving door and go through them anyway
because
our
major hospital has it as the entrance where my hubby was always there
as a patient. The guide cane will make a half circle in front of you at
all times staying on the ground. Think of windshield wipers but
completely flat on ground in front of you. Practice this in an open
area such as a church, school
or
hospital.
4. Using your other senses. This is one thing that concerns me when
you said you are losing your hearing also. I use my hearing a great
deal when transporting myself. I listen for an upcoming person in a
hall at the hospital. I listen for the shoes of someone I am following
in a public
place.
(I do have two family members trained as my guide person by the way.
This is where a guide dog might come in handy for you. He could be
your
"ears'.) I listen constantly in new area because my guide cane tells
me
when I
am going from cement to a driveway. I use my cane and sound to help me
cross at a red light at a busy intersection. I can hear my cane touch
the walls and curbs. You will have to rely solely on your hand and
guide cane to seek out your "frontal" space. It is always ok to stop
the chair and get your bearings with where you are by
taking
the guide cane completely around your area. You can even take it behind
you to see how far a wall or barrier is behind you. I use my guide cane
when
backing into a
space to sit next to a regular chair in a waiting room etc. Your
familiarity with the chair will take time and practice. I can tell you
on second day I was in tears because I am a type "A" personality that
likes to do things perfectly. But now, I have conquered airports,
school auditoriums, hospitals, and very busy intersections on public
streets.
If your healthcare provider is concerned you will lose your muscle tone
etc., that is an old school idea. I do my exercises in bed still (I
can do more now that I am free from pain all the time.) and I have
great upper
core
strength because I went to physical therapy to get exercises to do in
the wheelchair. I am constantly busy now in the wheelchair. My
kitchen sink and stove have no cupboard doors or wood frame so I can
pull my wheelchair right under to get access to do dishes and cook. I
use my table for my
prep
area because it is perfect size for chopping, etc. If I ever get rich,
I will have a counter built right near sink that will be lower for me
to use as my prep area or a center island low enough for me with a sink
in it. My church has been so great to me. They have built ramp, redid
the kitchen, widened doors and even put a new Pergo laminated floor in
my living room because my wheels were spinning on the thick carpeting.
What floors do you have in your home, by the way?
I have given you much to think about but truly...I love my electric
Jazzy chair. Now I am working on more storage issues on the chair lol.
I want feedbags or a special cover that is pretty and comfortable.
In closing, I will tell you that getting a power chair is the best thing
I could do to be the best mother that I can be. I now sit up proudly
when entering my son's school. I am smiling instead of being in extreme
pain.
I
am using that energy to engage in my child's world and community. I
personally feel more empowered in the electric wheelchair then having to
almost crawl into a public building.
I do have struggles because its not a perfect world and many things are
not handicap accessible yet. (Many bleachers at son's football games
are not yet handicap accessible for example.) I work with community
leaders, building owners, school districts to see that they do not have
accessible buildings. I just feel that I am an educator and advocate for
those with physical and mental challenges that prevent them to be all
they can be.
YOU
can...and YOU will...if you put your mind to it.
By way, if you are looking at the financial part of the purchase of
chair, you only need a doctor's order to get the electric wheelchair.
You then take the doctor's order to the medical supply store and they
will help
adapt
the chair best for you. DO NOT buy a chair without being able to try
it. Medicare pays for most of the chair costs and if you have medicaid,
I believe they pick up the difference. If not, and you don't have the
20%
funds,
look at different agencies to help you. You need to convince your
doctor
that you NEED an electric wheelchair. I had to convince my neurologist
that it would be better for me to sit to travel around my community and
home.
I had fell so much, he had ordered a Life Line (button that contacts
emergency personnel I have emergency) for me to wear because I laid one
day
til
my son came home in a long walk-in closet that was very hot. Since,
getting the chair three years ago, I have not fell once. (I have hurt
my
ankle
because I put down my foot between petal and floor which is another big
NO NO, I didn't mention.) But an ankle sprain is much better then a
broken hip
or concussion lol. NOW, my neurologist recommends electric mobility
for
his patients because he has seen how totally "freeing" it was for me to
go from pain to GAIN by using electric mobility. An electric wheelchair
improves the quality of life in people that have limited mobility due
to
injury
or disease.
Good luck, and do try to find a mobility specialist to assist you in
getting your chair and teaching you to use it. The blind association in
your
are
should have access to a mobility specialist.
MY LAST advice is to ENJOY LIFE AS IT IS...because its YOUR life and
your memories you are making new memories with your little guy. Laugh
at yourself when you run into a wall. If you goof and spill something,
figure
out
what could of been done to avoid that incident. Keep things organized.
You
will be surprised what all you can do from that chair. I even garden
but my wheels get stuck..I am gonna ask the wheelchair company to come
out with a John Deere wheels for on my Jazzy! HA HA.
Take every day as a Blessing! Best wishes! Keep me posted. deb
In a message dated 6/13/2009 11:40:42 P.M. Central Daylight Time,
mommaholly at gmail.com writes:
Hello everyone. I was on this list once before, but got off of it for
whatever reason. Now I am back with more questions and needing
support.
I am totally blind and while I was pregnant with my son 2 years ago I
started losing my hearing. Now I have lost one hear completely and the
other ear mostly. Since the tuor that I have is an acoustic neuroma on
the 8th nerve which controls not only hearing, but also balance, well
I'm vertually drunk all day every day.
With each day that passes my balance get worse and worse. I have
fallen countless times. I am afraid that oone of these day I'm going
to fall and break my nec or something very very dangerous. Right now I
live in Asheville, NC which is in the mountains. That is like even
worse with the balance. Right now I use a walker, but it still can't
make me catch myself whenever I'm already falling. My vistibular
system is wack.
So I'm leaning more to a power chair. I have tumors in my spine and
don't think I would be strong enough to push myself, especially up all
these sloping sidewalks, driveways, etc of the mountains of Asheville.
I am going to be moving back to Arkansas, flat land, soon though just
because these mountains are killing me. I'm afraid to go out of my
house alone afraid of falling. I always feel like crying when I go
out. It's so hard and I have to concentrate so intently not to lose my
balance and thinking about it only make the balance worse and I have to
go sooooo slow.
So I think really a chair would be best for me. I just am suck because
balance is terrible now, but being in a chair, will that make it worse?
My right leg is already weak. The quads are basically non existant and
PT never could get it back. There's nerve damage and really not way to
get it back. I have nothing to lock my knees so it can buckle very
easily. And since that leg is not strong I have trouble keepingthe
balance, then throw in all the other vistibular problems.
How does mobility in a chair work? Is it hard? One thing I was
thinkingabout, I know I'm paranoid. I know there are seat belts, but
what if the chair tips overand you're strapped in then that heavy
chairs falls on you. What would you do? How likely is it to tip?
Have any of you tipped it?
Also what would be the best type of chair to get considering I'm blind
and don't have my own car to adapt and also won't have public
transportation in Arkansas to call a Van and make surethey have a lift
and those little wheel locks like paratranset. Would a folding
powerchair be good? Do any of you have one of those?
Help, I'm full of question. Smiles.
Holly
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