Tomorrow and Echos from the past in the life of an MS person. - Into each life some rain will fall, but not a HURRICANE! - Personal - http://maxpages.com/happymspage/How_the_MS_Road_Could

Update;Dec.2,2000----- progression isn't easy to take but
as the book I'm currently reading ,"Don't sweat the big stuff"
says life is really made up of small things that roll in to
big new waves.
My latest small thing is my house although we made it
wheelchair accessible in 1995, it is still hard to turn the
corner from the hall into a room.I'm starting to have marred
walls and a couple of scratches on furnature.I have to go
very slow.

.
But there are a few things a wheelchair user must remember:
1. Drink lots of water,it is good for you even if you have
a bladder problem.It also is going to help you keep from
developing skin sores. It will keep your bowels in better shape
and it should keep you from getting a bladder infection.
2.Eat lots of fruit and veggies and lay off of the meat.
Your bowels will be better. These two items bowels and bladder
are the most frequent things for wheelchair living people.

Too many people who use wheelchairs end up dead from
their own neglect of their health.
3. Don't gain any weight. it will be hard on your organs and
for you to propel the chair.While I don't think you
should refuse help from someone who wants to push your chair
I usually like doing it myself as it keeps me in condition.
there have been exceptions . whenever you sense that someone
would be hurt if they were refused , let them push.

On a trip we took in Europe in 1996 I walked a bit with
crutches but survived the trip nicely because whenever
the coach stopped ,the driver got out my wheelchair from
under. Many on the coach wanted to push me. One couple in
particular insisted. so I let them. We have been friends
ever since and exchange e-mail all the time.
4. I find that whenever my legs are inactive as in my
wheelchair they start to swell. I counter this with
elestic surgical hose. You can't just let the blood pool
in the lower limbs.If you can move your legs just a
little bit it will help. Blood which pools can make
trouble eventually.
5. On inclines it is easy for a wheelchair to get out
of hand and slip away.This is why you have hand brakes
but you should always wear wheelchair gloves so your
hands don't get rubbed too much and you get a better
grip.
If you let yourself just sink into the chair without
worrying about the outcome, what people will think,and
how will you manage,then most of what you might worry
about will vanish.
When I first started using a wheelchair full time in
1995-7 ,we had a huge family outting on Kelley's
Island in Lake Erie. I had no choice It was the wheelchair
all the time as my legs had stopped functing.It was the
first time 90% of them saw me as such.The event lasted
over the whole week-end. By Sunday night when it was
breaking up everyone had acceped the fact and I was
happier.My next trial came when I had to pass the
driver's test . It seems like once Florida finds out you
have a progressive disease like MS are are on you to retake
the test every two years. I came to the testing site
in my Chevy full sized van with it's Crow River lift.
The testor came out with me and waited as I mounted the
life that would raise me and the wheelchair into the van.
Then I transferred to the driver's seat and started.
She was amazed at my control. She knew I had good control
arms have always remained strong through out my as my
20 years with MS.

6. Allow yourself to really enjoy life. There is much
you still find to do, even if you must use a wheelchair.
In my chair I have been to the movies, ballgames,fairs,
shooting matches, I swim regular.We travel all the time .
I find the travel world of cruises and air craft personel
take excellent care of you. I could tell many stories how
they have favored me.But the best is when they lifted me
and the wheelchair with a fork lift in Austraila into a
plane which had no jetway but only steps from the ground
12 of them. Museums are always fun too.

Two relatives who have spent almost a lifetime in their
wheelchairs have told me most of the precautions I have
listed here. Both have outliveed many in their generation,
including their husbands who never spent a day in a
wheelchair. There secret also included, trusting in the Lord
attending worship services almost weekly, bible reading
and getting ou to social events. Don't ever stay at home
and feel sorry for yourself, it will only destroy you.
Both of these relatives lived way into their late 80s.
The one told me ,"I wear out wheelchairs not the other
way about,like they don't wear me out" She got a new one
about every 5 or 6 years,

A book you should read if you are a long term wheelchair
user is "How To Live Longer With A Disability" This book
is sold by Accent on Living Magazine for $11.50 in the paper
back edition

Update:10-15-2000----Some research at University of
Baylor Medical college,The study points out that even
with treatment, from 2 to 6 new plaques form each year
in R/R types and the other progressive forms.
This is with taking one of the ABCdrugs.
Without any you are really asking for progression.
www.bcm.tmc.edu/neurol/research/ms/ms/html

A study shows that about 60% of MS affected people
were still working in the first 2 years after
diagnosis. But after 10years only 30% still worked.
And of the 30% about half were part time.
Among the respondents to the survey none of
the PPMS or SPMS people were working.Myself
I had to stop working after 6 years .It was
a struggle to get that far.The last two years
I used crutches and had a legbrace to the knee.
RET.

Each of us have thoughts about our future in a disease that
is notorious for always changing on us.
The changes are prriodical for the beginner in the
Remission/Relapse MS. But once you cross over the line into
secondary progressive MS you really cease to have the ups
and downs you used to have.
Staticics tell us that 50+% of the R/Rtype mS will someday
be SPMS. It can move fast or craw at at
a snails pace. But in the end it will progress.
None of the current ABC drugs will
really change the outcome, only make a delay.In
fact a study in the UK turned up statics that indicate
the value of betaseron and other ABC drugs will only
delay depenence upon a wheelchair by 30 months.That is the
extention or delay is an average of 2 and a half years
longer of walking before you need a full time wheelchair.

Now the demyeliazation of nerve cells in both the brain
and the spinal chord are affected.
There are several theories of what is attacking what.
Be it enought to know for now the process take place.
Someday the mystery will be unraveled.
But until that day we face a bleek future regardless
the type we have. Some MS affected persons about ten
to 15% of the total will have primary Progressive MS
from the start.
They will see a pace which varies with each individual
but the pace of demyelazation willnot have any let ups.

It scares all of us when we are first diagnosed.
But most of us are glad the diagnosis is finished .
Then your doctor and your other medical professionals
can begin to chart a plan for you.
You should take an active part in the plans.
In fact you should be the chief arcitech.
The paid professionals are just there to guide you.
Sure they write the prescriptions but only if you
really want what they are giveing you as choices.
You should constantly be reading,searching and
asking questions to the professional as well as
the fellow MS affected persons.
I'm not going to even speculate about my own
path of the disease,but I will say I do plan ahead
and think of what might happen.
Usually we are not 100% right.
But we know that at least 50% of what we believe
from our readings and conversations stand a good chance
of happening.
Not all the things that go through your mind should
be negative.
You now stand or maybe I should say usually sit
in a position of making some worthy choises for your
time left in your life.
Many MS affected persons have found the disease unwittingly
opens some opportunies that would be closed
doors if your life stayed on the same track it was on.
In the past my future plans for the days I now find
myself in were not the same.
My retirement was always one of action as I was very
physical and did a lot of walking, somedays over 10 miles.
Even when the Ms was just starting I was still
pushing myself to walk. Then it was less and less and
finally a scooter was doing
what my legs used to accomplish.
My vision of the future before diagnosis was when
I look back a bit naive to say the least.
I started to always picture myself as being an
exception to the rule of aging.
I praciticed all the good health practices known
at that time.
I felt I really had a handle on my future.
But when things begin to happen and I was
falling down, broke my tibia bone as a result of
one of the falls.
Other weird things would happen all the time
like double vision when ever I becomed fatigued
and it came more frequently.
Then the future was here and my diagnosis
which I has had a premunmission of happening had struck.
The Neurologist told me it would be the progressive type
eventually. I shall not go through all that happen after
the diagnosis. None of it seemed kind to me.
Giving up a good job,having to settle for what I thought
was less and start to rethink all the future.
How much was the disease going to cost
me in terms of actual cash,and disability.
My first visits to my local MS\ support group
which met every week was again another eye opener.
Most of these people had the disease before my diagnosis.
I wanted to learn from them. But what thay had become
in their progression scared me.
Some would have ran out and never come back.
But I decided the advancing MS cases did have a lot
to teach me. First they were still real people,
who had to relearn how to cope with this debilating
disease. Most were as successsful as you would expect.
I visited some of their homes. I saw the ramps.
The special equipment to grace the bathroom,and
the bars about the house.

But they tought me that the human spirit still
flies the flag of the personality.
The spirit of the individual doesn't get MS.
The spirit keeps proding the mind and body
to do more,in different ways.
New accomplishments can come to the open mind.
Even with a body which doesn't obey you much any
more you can be a winner.
Some of these dear people beat me at games of pool,
checkers , chess, and several types of cards.
They seem to delight in beating a beginner.
That was their spirit leading them to victory.

I met two women near my age once who had both been
in wheelchairs for at least 12 years.Both had been teachers
Both I got to know personally.And they both always would
relate how devistaing the disease is to nearly all who
get it."But don't let it run your life"There are still
a lot of things worth doing" These two women would be at
many social functions and seem to enjoy themselves.
They both had learned something from the disease,"There
isn't much you can do to fend it off. They both took
all the medications their doctors would offer them to
prevent the disease from making them any worse.
In the ten years that I knew them,little change really
took place as as the betaseron seem to freeze the
progression to a slow crawl."This is the best we can expect"
the one would say."If we can have this much in such a
mean and unpredictable disease ,that is a good trade off."

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