Happy life for MS people that want it. - Life is what we make it, not what MS makes of us. - Personal

Hello! And welcome to the Happy MS Page.
I suppose, you are saying "what is happy
about MS?" Having the disease is not fun.
What it prevents you from doing is not
fun. The prospects of further disability
is not a happy thought.

But we are happy with life not the adjust-
ments we have to make due to having MS,
There are islands of pleasure that can be
ours if we open up to them. So row your
boat over to one of these islands of
pleasure.

Such as now that you have difficulty walking,
try to figure out what you can do to put your
life on 'fire" rather than on hold. I took
up painting, it's a nice sitting prusuit.
Besides I always wanted to before mS but
never had the time.Also being on your com-
puter is fun. there is still reading,although
some of us have difficulty seeing the print,
or it looks double,or it goes out of focus
very easily. I like large print books. Most
libraries these days have a big selection
of large print books.
There is fishing,nice sitting sport most
of the time.Careful don't get too much sun,
or is it just us Floridians that worry about
that? No, we had skin cancer in Ohio, where
I came from 18 years ago. Hey ! any of you
Akron area folks send me email if you are
looking at my page. That doesn't mean that
others can't send me email.

I'm not going to go through all my recent
started hobbies. you will just have to get
and develop your own.But get something other
than just watching TV.
I did my Master's thesis at the University
of Akron on worthy use of leisure time.
What do I mean by that? Well that is not
like existing on massive doses of TV.

Worthy use of leisure time has 3 requirements
as I see it.And now you have a lot more time
on your hands than before being dignosed mS?

1. The activity must be physically stimulat-
ing, this leave out tv unless you are watching
an exercise program and you are working out
with them.
(a) What physical movement that you can
sustain is different now days.But you must
make the effort and learn where your limits
are now days.
(b) Does the activity get your pulse rate up
above just sitting?It should to do any good.
(c) Swimming as I have said before is the
best exercise for the person with MS.It cools
the body, as it supports it.To me going in
the water fofills all three of the criteria
for worthy use of leisure time.
(d)As your body works harder,the blood flows
better to your brain and other vital organs.

2. A worthy use of leisure time is mentally
stimulating, trying to outsmart that fish is
definately a mental stimulation. You are in
the fish's world. Painting to me is a mentally
stimulation to get the painting to come out
to what you had in mind.
(a) the use of your mind will remind you
that you are still a great person, and God
still loves you and in your effort to grow
into this new person that MS has forced you
into,He will be pulling for you. with God
on your side, who else do you need?
(b) People that are mentally stimulated do
live longer generally.The have so many things
to accomplish in such a limited time. We were
ment to push our brains.
(c) The mind can do strange favors for the
body. tHe happy people in life are using their
brains to do something wonderful. They
frequently are the ones that have the slowest,
rates of physical deteration. THis is true
in the non diseased body as well.
(d) THe brain can suppress pain. I'll not
go into that subject,but those of us that are
mentally active do seem to not notice the pain
as much.it is easier for us to put pain in the
background and keep working.

3. I have save the soul satisfaction for last
because I wanted you to think about the first
two before I got to the best part. This isn't
as difficult a concept as you might think.
does this activity grt you so excited that you
hate to stop? and do you look forward to the
next time?
(a) You would like to tell the world what you
are doing? You want to display it. Like a
painting for all to see, or a fish you caught,
that is big enought to mount on a board.
One person I interviewed said that she felt
a genuine leisure time activity like baking
cookies fit my discription of worthy use.
She loved to bake cookies of all discriptions
She wanted to share them with every one from
her son's team, the faculty, friends at
Christmas or any other holiday. Her cookies
were not just for home consumption, they were
for all that came her way.she truely fit all
the three definations of worthy use of leisure
time.
(b) Do you get the feeling that what you are
doing is really creative and thatyou are"plow-
ing new ground"?
(c)Do you want to sing or play music while
you are doing it?
(d)Is it something that you think you are
improving at as you do more of it?
(e) Do you get that 'wonderful"feeling that
is hard to describe to someone, but they can
see that glow in you as you do your thing?
Well if you have positive answers to each of
these three tests, then push on with that
activity. You have it made!

The goal of this page still remains the
same to help you with your adjustment to
life with this terrible disease. Feel free
to email me about any problems or
questions you may have about MS. I may not
have all the answers but I know where to
look. RET 5-26-98 I don't worry any more
about the future I havenot with my MS
progression as I put my future in
God's hands
God is a great comfort to me and I'm told
in my prayers not to worry.RET1-13-1999

PLANNING AND DECISION MAKING, THURS.,AUG.28,2003

We all have to come to some way of planning and making decisions. Couples especially, have to come to a working agreement regarding those issues that they have always decided together,also ones that they have always made on their own. We all have to make decisions at one time or another, but now that things have changed so drastically, decisions now have to be made together in order for a relationship to work. This is because of the physical symptoms of MS, but also of the cognitive symptoms.

It is very important for the well spouse or person in a relationship to become involved in treatment planning as they become responsible for putting many parts of the plan together. Someone, or sometimes both, have to handle a medication schedule, give injections etc. Treatments often fail if the well person does not know the medical staff or have their support. Very important is to know why a procedure is done.

Don't forget to do something nice for yourself each day. Try decorating your crutches that might be something nice to do for yourself see www.lemonaidcrutches.com

Eileen (Lobosgirl)

What I have always thought since being diagnosed PPMS

For a long time I was considered chronic MS then the international
powers of MS doctors seem fit to be more definate about some of
the discriptions of types of Multiple sclerosis more descriptive.

Then actually my doctor never told me for several years. He would
just say you know you have to expect progression to happen even though
you are taking betaseron,then maybe the next visit to his office he would
start suggesting I need more rest in my scooter or wheelchair.I kept
wondering what he was getting at .True I did get extreamly fatigued and
the level was slowly getting worse.Legs even with short braces would make
missteps when ever I was getting very heavy fatigue levels.
Then one day he was called out of the exam room to his personal office
for a long telephone call.he left the very thick record right on the deck
next to where I was seated.I decided to look at it while he was gone.
Actually I did have about 15 minutes before he returned.
It was then I saw spelled out in type "Primary Progressive multiple
sclerosis or PPMS.Then a couple of weeks later I got a copy of a letter
through the USPS ,that I probaly wasn't really suposted to get but through
some office error at the insurance company they repeated the fact I was rated
as a patient with PPMS.I was also told in that letter I was costing the
insurance company too much as I was taking betaseron which would never do
me any good.
After going to information available on the internet and asking several
fellow MSers who had PPMS I discoved really how bad this form is considered.

Then I started realizing why they like to keep such information as types
of MS away from you as this form in particular sounds so terrible ,as most of teh PPMS usually all end in being wheelchair users.
But I had been a wheelchair user off and on now for years and had mentally
made the adjustment that I really needed one.
Richard April 20,2008

If you ever have any questions about MS or
the treatment of the disease, please don't
hesitate to e-mail me. If I don't have the
answers, I have sources to get them. Some of
my links will get you there also.
The major providers , such as AOL,
Compuserve,Prodigy, Yahoo all have
information on MS. As I find more links
that have good information , I will also
add the link .
If you find one that I don't have,
please let me know.Thanks 4-21-98
Richard Tanner

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