[Blind-rollers] New Member

[AgapeDEW at aol.com]

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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