MS will change the way you think - great times and low times - Personal - http://maxpages.com/happymspage/My_20_plus_years_as_a

I early in the" Game of MS" become I dependent on using crutches.At first I was
timid about it and developed a inferiorority complex.I was sicker and sadder
in mind than body.But my spouse accepted it sooner than i did.We still attempted
to carry on a normal schedule.I was still working,teaching school to 7th graders and
working for the next two years with crutches as my walking aids.I was given a key to
the elevator of our two floor school.

The children seem to except the fact of what I was(disabled) and I was still their teacher.
This was some degree of comfort.Several people had suggested I retire early.But
by waiting I came out with a full retirement with more benifits than I would have received on a disability retirement.

After retirement I still hated where we lived as it was a huge house with 4 floors
of steps.Good hand rails but too many levels.But we stuck it out in that grand old
brick home for two more winters. The snowy and icy conditions which are normal
for Ohio winters bothered me as I worried about falling all the time.Finally
our last kid was in college.We were now free to move.But it would have to be a
more favorable climate.Florida was it.We took a fact finding trip there after the Christmas of 1988.We had no sooner got down there with our easy pull behind us trailer
when we received word via my wife's parents who lived in Florida in the winter.That my Dad had been found dead on the floor of his home.

We made our way back and even made some arrangements over the phone to the undertaker
to creamate his body. Then once back I had all the arrangements to make while winter
was in full furry.After the memorial service I had a estate to admistrate.I visited the
lawyer who would help me.we decided to stay at home and do what we would have to do
like prepair his home for sale.There was piles of junk we just pitched before the sale.
The house wasn't in the best part of town by this time and was difficult to sell.
I already owned 1/2 of it from my Mom's will.
My Dad had a warehouse also to sell which was easier.But i had to split that proceeds 4 ways.His financial estate was also sizeable and a mess as he had skipped paying
uncle Sam income taxes the year before. I had to hire a CPA just to straighted it
out.
Finally by June of that year the portfolio was in my name and all property
had been sold. We were ready to go back to Florida which was also very hot by June.
But we did it as we toured the state to find a place we liked. the coastal areas
were too crouded.Especially where Nancy's father and step Mom lived as snow birds.

We went inland and found an idea park with lovely double wide mobile homes.The second
one we went in we instantly wanted it and only dickered on price just a bit. We got this
well kept up small home for $50,000.Having fresh money I paid cash.
We now turned about and went back to Ohio to spend the rest of the summer in a cooler
climate and move there next October 1989.
That summer was pleasant and we intended to be "Snow Birds' and keep our home in
Ohio for living half the year.

Summer now for the 4th year on crutches was on me.I was comfortable with them by this time.I was still a bit bashfull about being so diffferent than nearly all other
people.then i met a woman in a local hardware store who took me under her wing.
She had used crutches and braces herself for the greater part of her life.
Being a single woman,she did all her own work in her home.She was so relaxed as the
cripple she actually was but she helped me to accept and put all my reservations
behind me and made using crutches almost seem normal.

I was now by summer's end more comfortable with my disability and knew I
was going to be dependent on crutches the rest of my life.At least I hoped as
betaseron hadn't yet made the market,and progression could take over and easily
put me into a wheelchair.So I told myself ,[Enjoy the crutches as it could be worse
in a wheelchair} Many of the folks who I met at the local MS support group were
in wheelchairs.They all thought I was lucky to still be walking even with crutches
and were quick to tell me so.

Getting about actually had become easier as I was growing accostom to useing the crutches and although my gait was terrible without then they actually smoothed out
my gait.I was doing long swims and also long walks .

We took a summer trip to Michigan and eventually ended up at Amigo's factory
where my wife insisted I needed a scooter.I didn't feel I wa sthat far along but
they were so nice to use.Much better than the borrowed wheelchairs I had been
using at malls.But walks were getting harder on me and they seem to bring on fatigue.
We bought the scooter with the idea my neuro would easily write a script I could
send into the insurance company tp pick up. Fortunately they did just that.Paid
for the whole scooter.I was all about the neigborhood on that scooter from the time
I got it.there was great comfort just sitting there steering it to any where
I wished. I had become a happy man with my assistive tools.

But lets look at the mental process I went through.
I had to accept the fact I was crippled,yes I use that word because that actually
is what I had become. Once that was the fact as a woman who had become my mentor
told me I had to get to that point of thinking.
I took my clue from her as she had been there now 30+ years and always seemed
so happy.Her model had become a model for me to follow.We were actually about
the same age. She always seem so busy doing her own thing.she shopped ,walked ,
dusted her house ,did her own laundry,bought her groceries,and other supplies.
She just was a worthy model and I almost fell in love with her.
Maybe I did.
She had seemed to be just what God wanted me to see and emulate.I even went
several times to her Catholic church ,with my wife naturally.She had many friends
who readily accepted her as she was not in some weird form but the lovely loveable
lady she actually was to all.

Fall came and we packed the stuff we would take to Florida.We had enough
furniture in our big home to divide.We rented a U-haul truck which my wife had
to drive all the way as I couldn't by this time handle the foot work to drive.
My legs were no longer reliable.I had gotten hand controls that summer on our
minivan and drove it to Florida .
It was our first minivan as I needed it to transport the scooter.
We now had to hire all the lifting of furniture as I using crutches couldn't do it.
Not being able to do something becomes a stumbling block in one's mind.Its
something you have to get over.You handle yourself like a drunk trying to
dry out in AA.You have to admit you are a drunk and very dependent on drink.
The same was true with having slow progressive MS.You accept its not going to
change and the crutches will always be necessary.You recognize as I said before you are disabled.The state of Ohio had issued me a handicapped parking card.
I got special rates and priviliges on Akron's bus system.In Florida I would
also get special priviliges,such as a lifetime fishing license.The doctors who
signed my paper work for such priviliges all knew multiple sclerosis is forever.
I just hoped I wouldn't get worse as I had been told I had a progressive disease.

Fortunately I was by this time now 54 and older that many young persons who
found themselves affected by MS.Many my age age had gotten Ms at an earlier age
and were now in wheelchairs.As I said before they made no bones about the fact
they wished they were me. this fact actually helped me to gain more confidence
in my place in teh MS world,less crippled than many others.

Moving into our new home was a joy.The weather in Ohio had started getting cool in October.Florida was still hot for the next two months. Then at Christmas time
that year the temperature dropped suddenly to a real freeze where it one night
dropped to 18 degrees one night.Many orange groves were frozen.Our outdoor
watering system about our home also burst from the sudden freeze.Its never been that cold
since we came in the next 16years.

But as warmer weather came soon after the pleasantness of Florida came back
again.I then had to pick activies that I could do.Gulf had been out now for several years.But swimming was in and I'm good at it.Our pool where we live is heated to 80
in the winter.So I do it almost daily.
I soon found a good neuro here and had records transfered. He still wanted to
do an MRI again.This doctor wanted to tell me the same thing as the northern one.
he told me the crutches were perminent.Eventually then in two more years He had me
into my first AFOs.I had lost control of both feetand had severe foot drop in each.
I was happy for betaseron to come on the market in 1992 and got on the medication
immediately and have been on it ever since.
It has greatly slowed down my progression,but I still believe a wheelchair on
a full time basis is some day going to be necessary.But with the new more modern
braces I have now and therapy I can actually do 1 and a half miles in cooler weather.

In the time sincecoming here we have since my wife had her heart attack in 1990,
bypass in 1991 and stints since then traveled about the world.Neither of us
have held back from travel.It has its problems but all worth it.
I started the www.happymspage.com in 1997 I never expected to have so many
visitors as it now has every month.Actually life has been good to me as
progression is very,very slow.I'm now an old hand at getting about on crutches
and braces. They both seem like parts of my real body.I feel they do more
for me than the meds.

For us who are now secondary progressive multiple sclerosis(SPMS) We eventually
fine the use of a wheelchair is more to our advantage.Some will say the percent
of SPMS people using a wheelchair is even greater than the 60% I quoted. from
a doctor.
But as the disease progresses past the 10th year many of us develop weaker
legs that almost refuse to hold us up for very long or for much distance.
By the 15th year the number of Wheelchair users are double what was the fact
at year 10.then by 20 years near all need one most of their serious distance trips
over their other options.
The other options would be being fitted with full braces.Many don't adjust
easily to these braces from shoes to their groins.Even with the knee lock off
they are not the easiest things to get used to.
RET

Eileen Lukeman and Richard Tanner

FL.

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

Visitors: 00977

Page Updated Wed Jan 8, 2003 1:29am EST