Planning your Future regardless of MS - We usually can do more than we think if inspired - Personal - http://maxpages.com/happymspage/Planning_your

UPDATE April 2,2008 Fast changes with MS especially PPMS (primary Progressive MS)
Several times I have had quick changes that unfortunally stays as is typical of
PPMS.Early back in the beginning I started with a cane even before I was dignosed.
Then about two weeks after my dignose via a MRI I was visiting my doctor and he insisted my walking struggle with a cane was too much and he immediately prescribed crutches.
In fact I left the office building using them and the cane was put aside and promised to be kept safely untill I could pick it up later as I was then using the bus inAkron.

As I walked out actually crutches and me were no strangers as I had been force to use them several other times.But still hoping that that day of needing them all the time wouldn't come ,it had in fact come that day which I felt was quick.The fact of the matter over the next few weeks I had to admit to my self I did better with the crutches than the cane.RET4/2/08

When we were first dignosed fear probably wrenched at our hearts.
After a time our doctor put us on one of the crab drugs such as
Betaseron, Copaxion or Avonex or Rebuff.the idea was to stabalize our
disease.Fortunately these drugs work for most of us.
But then we discovered that fatigue didn't seem ebated by any of the drugs.
I have been on betaseron now since it came out in 1993,but I frankly believe the insurance company has waisted a lot of money,and my doctor is wrong but i have yet to convince him that with Primary progressive MS this med will not work.
He has no doubts about my catagory of being PPMS and I can'r see why he insists
I still take betaseron.There is no place in the MS literature concerning PPMS where its ays Betaseron will help even slow down progression.My wheelchair dependency has grown from occassional use back in 1994 to full time in 1995 and then off to most of the time after strainous therapy in 1997 and then it slips back to full time need in the beginnging of the year of 2000 and has me seated every since except for very short walks with crutches and braces.

There is probably no perfect drug to delete MS type of fatigue.At least
I have found none.The longer you have MS the more likely you will find this out.
In the past I have had MSer that told me how nicely they are getting along.
At one time I believed them.then usually I discovered they have a very light
case of MS. Then that makes me discount what they say quite a lot.

The typical MSer will experience grinding fatigue .But now I say learn to
plan around it. Fatigue requires plans for sleep and rest.Also ways of
getting things done by saving the energy we have to use.Its less for me as I
get older and the MS has been active in my body. Actually betaseron or any
of the others will not make you into a new person such as their ads might
suggest.

Early in my MS "career" I soon decided I needed a scooter to get me about
and save a lot of energy I needed for nice things other than walking.Yes I could
still walk but it seemed to me walking frittered away my limited energy so
my neuro suggected I should have a scooter after I suggected it.
In those days , back in the 80s usually an insurance compamy would pay for your
scooter.Now days they mostly wouldn't pay unless you absolutely can't walk.
So figure you need this luxery.
They have come down in price so maybe you can hack it.They are worth it in
the saved energy after you have used much of your strength walking and you
don't feel like napping just yet.

One MSer who was fairly along on her disability told me once she set plans
for only one good thing a day. She could walk just a bit so most of the
time you would see her going about the community on her scooter.She had
several hobbies that she particapated in daily.Rarely did she miss any
of them before her afternoon nap. Then like the rest of us she was revived
in the late afternoon and her husband was ready to take her to a movie or
out to dinner.They loaded in her scooter and then went.

I guess what I'm saying is some of the most affected MSer know how to get about
and still get on for more.But actually if MS has gotten into your legs ,which
its most likely to center its damage even if you are on an interferon,then
you should walk no more than you absolutely need .let teh scooter do it for you.
One person i know was recogmended to get a wheelchair but she soon discoved
someone had to push her and she had a traveling husband that was away from
home frequently so her plans had to be put on ice till he got home.

Then he frequently was also tired and later in their marriage it was discovered
the
reason for his fatigue was too much stress that eventually caused his
heart problems and he then wanted to rest much of the time.Actually
he had congestive heart disease enough so that he ended up with early retirement
and within two yrs of his retirement he died suddenly.

This left her really morroned at home until she wised up and got the scooter and
a lift to get it into the car.Then she told me her social life actually begin to
take off as she migrated through the city to events she wanted to do.

Now once you learn how to overcome fatigue coming on early in the day instead of
later in the day now you can plan to your life's wishes.

Eileen Lukeman and Richard Tanner

FL.

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

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Page Updated Wed Aug 13, 2008 11:07am EDT