[Blind-rollers] New Member
Holly Alonzo
mommaholly at gmail.com
Sun Jun 14 23:00:07 UTC 2009
Wow lots of information. Where to starts. My hearing.
I always relied on my hearing to do mobility with even just a cane. I
haven't had o&m as a deaf-blind person to gigure out how to do this
without hearing. I am completely deaf in the right ear and the left ear
has a moderately severe hearing loss with approx 30% speech recognition.
Since this is because of nerve damage, and the doctors can't fixthis
it's only going to get worse unless God steps in with a miracle. My
right ear hearing and balance nerve has already been taken out with a
tumor, so my balnce is way off and will only be off even more ifthe left
side has to come out or gets destroyed by a tumor all at once.
My legs will probably continue to get weaker, or aybe it's just the
vistibular system that makes tyem seem weaker bt I just tip right over.
Like you I am using all my energey not to call that when I get somewhere
I hurt so much, I'm so freaked out, or I just wantto cry.
I don't want to be afraid of leaving my house because of my balance and
stuff. I want to do things with my son. So a powerchair would be so
much better for me. And I could easily get a doctors order, no problem
there. Thanks.
Holly
-----Original Message-----
From: blind-rollers-bounces at nfbnet.org
[mailto:blind-rollers-bounces at nfbnet.org] On Behalf Of AgapeDEW at aol.com
Sent: Sunday, June 14, 2009 5:59 PM
To: blind-rollers at nfbnet.org
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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