UPdate; July 13,2002 Rehabilation and what it really means.
If you would ask most people you meet what is medical rehab,they would
say its treatments and therapy to get you back to where you were before
the disability started.That may be true for injuries as in accidents.
But many times even with accidents you never get back to where you were.
Kids that go to a Shriner Hospital frequent find that what they have can't
be remidyed ,just treatments to keep it for slipping away and getting much worse.
But the physician's idea of rehab for a chronic disease doesn't match this idea.
They will attempt to do three things:
1.Get your mobility to the point where its better than it was.Sometimes gait can be
corrected a tad,but mostly their approch to perminent damage to the gait is a cane,
crutches or a walker.If you have drop foot very common with progression in MS
a AFO brace will be prescribed.None of these approches sound like getting you back to
where you were.But that doesn't happen in many progressive dieases,just ask the post
polio patients what rehab is to them.If you enter into rehab with other ideas
then you are likely to be disapointed.
2.They will try to get you to accept what you have and this comes under the heading
of psychologial adjustment.No you probably would see a shrink,but a social worker or
a counselor traned to help you see the road ahead of you as it peobably will be.
This could be a different treatment for a woman thn for a man.Your age will be
taken into consideration,as will your ability to work or not to work.
These experts are aware of the fact that 50 to 60% of the MSer after 10 yrs can't
really carry too heavy of a schedule due to the extream fatigue it brings .
Make no mistake the mental adjustments in MS will try your soul to the core.
This is no disease for wimps.You will have some hard choices in the near and distant
future times to come.
Inspite of the medications we have in the MS war ,they really will only delay.There
isn't any cure.Many before you have looked for the "exits" but found only a solid
wall instead of an exit.Maybe some way the wall will be breached someday.But don't
bet too hard on it.Its nice to maintain a positive attitude but deep down all of us
positive attitudes showing still have our doubts.
3. Social treatment or how do I live with it and what do I tell friends and family?
nearly most adults have an attitude or a consecption of what MS is or at least
what they think it should be from what they have seen on TV,magazines,papers
They have seen everything from assisted sucicdes in the worse cases to a few with
MS in remission,and those who occassionally have a relapse and spend some time in the
hospital,then come home and usually many will find there are little changes that happen
when they had the relapse which wll not completely recede in remission.
They will be oriented to the fact that slow gathering of accumulated micro disabilitys
will eventually lead to still more.Many will think as will there doctors they muct change
from one ABC drug to another.Sometimes this helps a bit.
The bottom line of MS is nearly all will never be the same after a few years .
While you progression may not be as fast as others it still will take place.
Then too you may have a body which quickly has rapid progession to early
disability.This is a numers game just like all other progressive and not cureable
at the moment.The moments to cure probably will yet be years.
There is also a joker in the rehabiltation.The cost of rehabilating you is taken into account
by your insurance,if you have such.There are limits they will place.If results that
might be reasonable aren't reached in a max of 12 months ,most will pull the rug out
from under you.Some would wait that long.The assistive equipement you would like will
usually not be what they will pay for.Things like power wheelchairs are pad for
occasionally,but uisualily eneven the most needy will have to have some one who
knows the ropes pushing like crazy.
Luxeries like hand controls will seldom be touched by insurance,so too will ramps,
or special cars to carry your scooter or wheelchair.
My mention of a wheelchair may scare the hell out of you,if you are just dx in recent
times like less than two years ago.But if you doubt that many of us need them just
look at the advertizing in the MS magazines.You will also face the fact your bladder
will never function as it has in the past ,most of us end up not being able to hold
it very long if at all any length of time.Get ready for such an event.
Many of you will try to extend your use of the cane and find you really can't .
You end up
paying with mysery the next day if not sooner.Even over extending yourself with
better equipment is still tricky.Someof us can get fatigued just in a power wheelchair.
Many of us also started with canes now in storage somewhere in our houses .I stored mine
thinkingmaybe I'll have a good and long remission someday.But once you have passed
through the doors of Secondary progression,which only swings in one direction
forget remissions they don't happen any more.
Now maybe you vcan see what the physicians think rehab should be ,not get you back to
square one before Ms but makeing you live easy with what you have and will have to
deal with in the future.RET
The Bottom line
Swollen legs and feet are they something we all get?
Probably all of us with very little walking it will happen.
I find on days I swim I have less,even though my legs give me very little power in my swim.
Too much sitting in my chair will do it but walking is nearly out of the question.
Elestic socks or support hose is a way but they get hot especially where I live in Florida. Men will probably at first kick being ordered into elestacic hose up above your knees. I can't sit all day with legs up on the stool.
My doctor is aware of the problem and has proscribed Lasic to increas my bladder flow or as many call them water pills.They too work but they will also empty your body of many
valuable chemicals and have a short as well as long term effect on your general health.
My doctor has a personal theory that if you are a frequent wheeler then the blood will
flow to and from the legs even though they are not doing the work.He succeeded in talking
me into using my wheelchair,not scooter more .It seems to work.
The individual is capable of solving many of their problems without drugs.
It is now a pet theory of mine.I believe the person who suddenly becomes disabled must
make radical changes in order to keep up with the changes.
When the individual doesn't keep up with the changes ,then a bad mental attitude sets
in and soon we find many other things go wrong in the body.The human mind just can't stand still and let the body go down.
Many old people have trouble with disability,and just give up.We had a man down the
street who had a stroke.i told all his visitors he wasn't interested in recovery or rehab.
It wasn't long his body got worse and soon he was dead.
The doctor told his widow he should have had a more possitive attitude and then he might
have survived.We have many people who accept the challenge of disability and go on to
circumvent the problem and do great things.The mind controls the body not the other way about.RET
Update May14,2001 Live for you ownself and not for others. That is right selfish
as it may sound don't accomidate for others.
In E-mail I receive all the time I hear them say "but my family is so effected by myMS"
Sure they are but don't you do all the adjustments in thinking of the life style you
must follow.Don't try to act as if you don't have MS.There is two negatives in the last
sentence just for emphasis of the point.When you partly deny the fact you have MS by
Although your Ms can change quickly your life can be very
much similar to what you have had in the past.Really!!You put your mind to it and
with the assistive devices and the right attitude you will be able to keep the life
you have grown accoustom to still the same.
Sure your walking isn't the same,but your handeling of a scooter will take over.
Believe me its a skill we all can excell at with some practice.The other day I took my scooter over for our neigbor to look at a little closer.The woman next door will never be the
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