MS Is No Place For Wimps or the Faint of heart - There isn't such a thing as non progressive MS - Personal - http://maxpages.com/happymspage/MS_is_no_place_for

UPDATE Oct.19.2003 Has the feeling that your legs ,arms and maybe your whole body is like lead?You can hardly move them,especially the legs.I was just told I have lost over 60% of my upper leg strength and muscle mass has started to convert to worthless fat.There was absolutely noting I could have done to prevent this from happening.I swim almost daily about 1/3 mile then I'm tired for the next 3 or 4 hours.The exercise of swimming actually did delay the loss of leg power ,but the fact it still happens is proof how mean this disease can get. RET

Interesting e-mail letter I received Feb.2,2003
Its goundhog day and like the lowly ground hog I feel depressed.While the
groundhog will go back in the ground for maybe 6 more weeks of hiding,I feel like going
into hiding as now is the day I finally have to admit I can't walk any more.
I have toiled with this wheelchair of mine. Using it some days all day,while
others I have used it only a few hours.
Now the message has finally reached my brain as the fact is I'm better off in my wheelchair as fatigue is far less this way. It took me over 8 months to come to grips with this reality.Now I can come out of hiding as its now the spring of my MS life,and I can accept the realities better .

I was told 23 years ago that I had the progressive form after my MRI
was examined.I remained just as stunned as many of you too have found yourself
in in the weeks and months following your terrible day of being dignosed.
We all thought we would never get as bad as some of the people we would see in the
support groups. Frequently we were so scarred with what we saw at monthy support
groups we may have decided to never come back.

Then came along the support pages on the internet.It was easier to accept as we
didn't have to see these people in person any more and the likely hood of them
posting seems also remote.
There is even a tendency of the NMSS and other support group pages where
many travel to will advoid telling how may actually do or have progressed by 10 or 15
years.
I remember reading from one well published expert that he has yet to treat as a
physician any one who doesn't show some progression over a rather long period of time.
He also mentioned that ,while many have fast progression ,at first the speed is
not likely to stay at the same speed. As \different drug remidies are brough on the
market more of us will benifit from them and things will stay at a minimium.
The same I have thought.Each one or two years without much happening,I would start
to think maybe I'm at a perminent stand still.
But then things break loose and change after long quiet periods.The time I started
loosing control of my bladder wasn't one of my easiest to accept.I started very gradually
loosing control and within a year got to the place I had no confidence I could
ever control it with any thing short of a Depends .Even now with protection I still get
a skidish feeling when I uncontrolablely let go.
But don't make the mistake of trying to control it by drinking less This will
have an even worse condition. When i frist acceped the need of something needed to
control the flow from showing I would go cross town to by Depends as I didn't want seen
in a store with them.Now I don't care.

Assistive devices : Like needing canes ,crutches or wheelchairs ,braces and or
walkers wasn't ever an easy thing for any of us.At first I was very sensitive using
a cane.Then finally I accepped it and suddenly mu doctor told me my gait was so bad
I actually needed crutches.Deep down I also knew this was true but found it difficult
to accept for nearly a year.
It was also my wife who told me I needed a scooter for long distances.My excuse
at first was they cost to much then I found out my insurance company would pay for the
whole thing. There went my excuse.

Then suddenly my theripist and doctor both said I needed a set of hand controls.
The demand for something new never stopped. The day i had to retire wasn't easy but
fatigue was so strong and ever present I could eventually think of nothing else.

Eileen Lukeman and Richard Tanner

FL.

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

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