Help you can get in most communities - The ABCs of living alone as a severely disabled person - Personal - http://maxpages.com/happymspage/HELP_you_can

UPDATE; Dec.20,2000 I just learned if you go to a pharmacy in Florida
You must present your medicare card at the time of giving them the
prescription. You will get the wholesale price +9% Rather than the
retail which in some cases is 3 or 4 times more.

pdate:Sept.9,2000----try www.themedicineprogram.com
I didn't follow this link up but it sounds like a good
prospect for many of us.
Personally I wouldn't qualify as my perscription
insurance works good.

Update; August,15,2000------ In some of my investigations
I have discovered that wheelchair seating in play houses,
stadiums and other public places which
charge to get in will give you a huge discount.
Although some are wise to imposters using wheelchairs
to get the advantage. I had to show my driver's license
with it's limitation of needing hand controls to get
the discount ine place in England.
I have heard of nice discounts at Broadway shows also.
Although I head up this article as living alone,
I'm married but I have some experience of staying
at home by my self for as long as one month once, and
frequently for a week as just now.
So I do have some experience although not for
months going into years, But I have intervied
some people who have done so.RET

Looking for help? As you become more disabled
and especially if you live alone you need more help.
Even if you are still walking you can get more
assistance that many MS affected people realize.
Start with your local MS group,or NMSS chapter.
They really are a gold mine.Start digging.
What are the services you might be
looking for?
1.getting about: In most cities you will be able
to ride a special transit.
It is sometimes called paratransportation.
We called it Scat in the Akron area.
They will come to your door to pick you up but
you usually need to call them the
day before to get picked up and brought home
the same day.
There are usually hours limitations to their services. In the area I now live they are running regular service by our area with a bus which
does have a wheelchair lift.
The service is hourly. But you don't have to be in a
wheelchair to get the service.
Some I meet are visionally limited,others just are
slightly disabled and don't have a car of their own.
2. While in large cities I have found that the senior
citizens and the disabled the local transit for
usually less than $.50 in San Francisco It was 35 cents.
This is subdized by the federal government.
Take advantage of it. It's much cheaper
than driving a car.
3. If you atain the status of SSDI or early social
security then you are ellgible for low rent housing.
Moch of this is accessible but that which isn't
still usually has bars in the shower for those of us
who are only slightly disabled.
You may ask what do you mean by slightly disabled?
There is slightly, moderately and severly disabled
these are not my terms but are used by all doctors,
and the government.
Slightly is you have the ability to live by yourself
with out any special outside assistance.
You don't need it and you don't want it.
You might have a low vision problem,or you have a bit
of difficulty getting about, that is you need a cane.
In the second group, moderately disabled, you may
need someone once in a while for cleaning or other
jobs you can't do,but you are still able to take care
of your
self personally, such as baths, dressing and prepairing
meals.
These people may be assisted in their walking with a brace,
crutches or a walker.
Many still own a car and drive.
Some in this area are legally blind and still get about.
The last group of severly disabled are usually
wheelchair users on a full time basis.
In this group there is a sub group those who can
transfer by themselves and those that can't.
The latter group will have to live in assisted
living centers or in nursing homes.
Some in this group will also need help getting bathed,
dressed and some even need to be fed and dipered.
But in the less disabled in the wheelchair user ,
they wiil need help on a weekly or some every other day
basis but other wise their lives are more or less
indepentant.
I was in the wheelchair group which could transfer
and live more or less by themselves for almost 2 years.
Now I'm in the moderately disabled group.
When I was a full time wheelchair user my wife would
go places and leave me for up to a week by my self.
The first thing you must have is a home which is
wheelchair accessible.
We do have such a home. If you don't you can get
assistance to have it so made. But should you be
renting it probably is best for you to consider
moving into quarters that suit you better.
If you own the home and you don't want to move
you can still get assistance to modify the home.
First is the ramp, make sure you get one that has
some beauty.they don't really cost any more and
they look like they are part of the building
not something tacked on in a hurry.

You will also need doorways that allow the chair
to move . The recogmendated with is 36 inches.
We couldn't get this so we settled for 32 inches
which will allow a wheelchair to pass.
The manual chair is better in the house as it does
corners better than the scooter.
The power chair takes some getting used to and
you could end up with a lot of banged walls.
Personally i took off the foot rests and found
it much easier to get about a home which is
24 by 50.,and doors all 32 with one graceful
ramp in the front.
You will live a much more satisfied life if
you get out very frequently, not just to necessary
places like going to the doctors.
Make ways to travel to shows, church, meetings crafts,
community centers, and even some friends homes.
All but the last will probably wheelchair accessible.
While it may not be possible to meet with a friend
in their home, you should plan to meet them in a
public place and still maintain those contacts
with people.
You will be glad you did.
I know a woman who uses a wheelchair and she
is so much fun to have around that her friends go
out of their way to accomindate her.
They who live in homes which are almost on the
level have now small ramps to let her in the home.
She goes on cruises, the theater and it is hard
to find a place she hasn't gone.

SHOULD YOU RETIRE EARLY? Depends on your
condition and what you do.
I know a woman who is an illistrator,she has MS
and has had it for over ten years.
She still works from a wheelchair in a beautiful
office with an impressive view of the city.
She is lucky in a way her work is made for
sitting down.
If you don't have such and can't get into something
less physical, you will probably have to retire.
The main difficulty with SSDI is getting it the first
place. We have another article on how difficult it
is on this web site.
When you get it ,you will not have as much
disposiable income as you are acostom to spending.
I personally didn't get it because I had a retirement
pension much larger than SSDI and I wasn't elgible
for any social security as I had beena employee of
the the state long enough. I am permitted to also
earn as much as I please without penilty.

Housing---- Low rent housing is available at 30%
of your income.If your income is $2000 a month that
comes to $600.
You are not likely to get $2000 a month on
SSDI more like $500 to 600 for a single person.
That brings you to $180 for rent.
If you have any hidden capital keep it hidden.
In one low rent appartment facility I had friends
living in it wasn't uncommon to find those with a
separate and distant mail box under another name
where they received their dividend checks from
several companies on a regular basis.
There are some real nice low public housing,
make sure you check carefully.
In most cases the disabled get preferance to
getting in, but sometimes you have to use
political pull.
Usually there is an inspection of your quarters
twice a year.
In most cases the public transit is very near
by as most of the residentsneed it,since they lack
the money to have cars or their cars need repairs and
they can't afford them and they just sit there.
In any metropolitian area there are many public
low rent housing projects.
Make sure you check them out carefully.
I one case where we lived the high tower
with low rent housing but the apartments were all
pie shaped and small would go a begging for residents.
The view was great but the apartments small.

The visiting nurse and other assistive people
you might get to come.
First you must prove the need and they will check you.
but I know a couple where the man is very capable to
assist and they still get a nurse twice a week as she
is very difficult to take care of and is easily getting sick enough to
be hospitalized.
She can't transfer and has to be lifted with a lifter.
These lifters can be aquired when and if you need
them and you will get assistance in their purchase.
The powers that be would also rather see you
getting a power wheelchair than a scooter even if they
are twice the price.
Some people even get the fancy vans with the
Crow River lifts if they have service connected
disbility.
Some even have claimed service disability from MS
they got while in the service. I know of one such
person who gets an other van with a Crow River
lift every 4 years. His old trade ins are beautiful and
great bargins.
Many supplies can be delivered these days.
Folks are ordering on line to get
just about any thing. So If you are a wheelchair
user you might as well get it
delivered.But usually the chain stores willnot deliver
so deal with indepentants.

Ramp building in your private home;
Get a good home carpenter to help you draw up
some plans.
I did and I'm not sorry. What he designed fit the
house and looks beautiful.
The front steps were eliminated completely.
Every one comes in by the 6 foot wide ramp
to our house. It rises gently within the one inch
rise per foot of ramp. It has decortive black rails.
It looks like it has always been there.
In a community where many ramps have been built
it still looks the most natural.7 years ago,
1993,it cost $600.It is complete with outdoor carpet.
So many of the ramps in my community look so temporary
as if they would need them only a short time.
Theyshout out "IM a CRIP"

The Moderately Disabled Person;
Now for the people like myself, who fit into the
middle group or moderately
disabled. We usually have crutches or a walker to get about.
We prefer the scooter when out of the house.It saves
us for longer timmes with out fatigue.
We can do many things for ourselves. Nobody is needed
for bathing us, we can get our meals.
Most of us shop for what we want,and we can go places
by ourselves.
But we need rest and can't work full time some of us
don't even want part time work.
We need some one no less than every two weeks to
clean the house,and take care
of the lawn and shrubs in the outside.
Condos are great for us as the outside is
The condo is usually easy to keep going and when you
travel you don't have to worry about it and someone
noticing you aren't there.
Now if you were fortunate to retire with a
great pension as I did before Ms set in too much you
have money to do a few things with which will add
sparkle to your life style.We get out to do several
trips a year,one is usually a cruise and the
other might be a elderhostle at some attractive
place like Napa Valley Ca.
While you may do a lot of sitting as I do ,don't
allow yourself to become too much of a couch potato.
It will just allow other dieases to rob you soon or later.
Get some exercise.
I personally like swimming and I say why in my article
"Swimming is the best exercise." which is on this same
web site.
The one thing all of us in this catigory must keep
in mind is we will even with taking one of the three
ABC drugs eventually slowly progress to a little more
disability.

The Ones who are just slightly disabled:
You are the cane users,but still with too much
exercise or work you become very exaused and fatigued,
which is the common thread too all MS affected persons
With the use of one of the ABC drugs you will stave
off any rapid progression.
You may go for years in aproximately the same condition.
But you too may have to give up working at least
full time .
If you should retire then you will also be
elgible for most of the "crip perks I mention here.
All odf the rest of us mentioned
previously all went through the same phase you are
now in.
Taken care of and all the maintaince is done.
Giving up working is all a matter of if your body
will take the work rutine day after day. Most of us can't.
Many employers don't really want you when your
protivity has dropped ,even in this thigh labor market.

Personally I was glad to retire at 51 since everyday
was a real struggle.
I was in the right place at the right time it seems
as the school district was offering a 5 year buy out
which cost them thousands per person.
And it raised what we would get every month from the
difference of 30 years to 35.big difference.I was
suffering every day.It was a great summer the last year.
Although i'm occassionally offered a job I have
turned most of them down
unless it is only a couple of days.It is good to know
your bodies capacity .

" Getting back to getting help"
Always start with your local NMSS chapter they
have great connections.
To start with they have a loan closet of equipment
you can try out. Most assistive device merchants aren't
willing to let you try out equipment away from their store.
I was able to try out a power chair from the NMSS to see if I
liked it better than a scooter.
I didn't but you have to find out. A buddy of mine whom
I had met in the support group was always telling me
how to get free stuff. The people you meet in these
support groups are really great. While what you learn
on the internet is good, what you can find about the local
community usually has to be learned from some one in
a support group who has been there a while. There are all
sorts of skeemers in these organizations.

Don't sell your doctor short either on information.
They too have connections.One doctor informed me once
I could get a life time fishing license.He had the
forms to fill out. It ended up being also a hunting
license also. Another doctor gave me information on
people in the community who might be interested in getting
an accessible home. the present doctor I have told me
how to get things done at city hall. I needed a double
parking space at a certain place I parked frequently.

Your insurance company has people who are nurses
to advise you. They will tell you how to word your
requests so that they get accepted. They give patient
information you may not find either in books or on
the internet. What you can expect when you are diagnosed
secondary progressive from R/R type MS.
he day my doctor told me I had SPMS was a heavy blow
I was glad I had a nurse on the phone who talked as
if he was right in the room with me.

One of the areas many over look is normal classified
ads in their paper .
If you have a item which the insurance company will
not purchase such as a wheelchair van which they
consider a luxery . The ads sometimes bring
about people glad to part with a slightly used van
with a Crow River lift.
They don't realize how much demand there is for
such vehicles. If you see a cheap one in good shape,
buy it if you can as with patients you can always
resell it for a tidy profit if you get it cheap enough.
Things in an estate sale sometimes sell rediculue
less low sometimes they just want rid of it in
a hurry. Recently ther was a single wide mobile home
which being equiped with a nice gentle ramp, wide doors,
wheelchair fitted kitchen and bath. All which was
very expensive in the beginning,costing about $27,000 ,
and being lived in only 3 years ,sold for the low price
of $3500.
What a steal. I have seen hand controls just given
away because they didn't sell at a estate garage sale
in three weekends. They also gave a Bruno
scooter lift away for the low price of $100 .

Eileen Lukeman and Richard Tanner

FL.

Eileen(Lobosgirl) and Richard (RET1000) both at aol.com

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Page Updated Wed May 7, 2008 9:45am EDT