Eventually with SPMS ? You will need more help! - Once you get by the shock of it ,its will require more help - Personal - http://maxpages.com/happymspage/PPMS_and_SPMS_survey

UPdate: June 17,2007 I have been looking through my journal of my MS "Career"
I started back in 1996 to be classified with secondary progressive MS.It was a
shock to me the day my neuro told me I would be fighting harder to just walk,as my walking ataxia would get worse. Why was I not told this at the begining of my disgnosis?
From then on I slowly noticed my gait getting worse.My distance I could comfortably
cover shrunk to less distance almost every 6 months. Then I realized the defination
to SPMS or Secondary Progressive MS.You slowly loose ground and have more things
happen you have to deal with.

My holding of my bladder got worse and I started to leak out very easily.I went to
a urologistand he told me incontinents is common with people with MS and he could
get me a bag to attach to catch it.I rejected that idea and he said then you will
just have to get used to adult diapers. I did starte then wearing diapers when I
went out of the home as I had accidents that had to be cleaned up all the time.
Now days its to the point I have to wear diapers at home as it starts to leak out
before I make it to the bathroom.
My other new problem developed about 2000 when I started to choke easier and had
eat slower and smaller bites to advoid choking.

The next thing was was in 2003 when I noticed I easily would have a jerking of legs
that seem to make walking even more difficult.Eventually by 2006 I was worried about falling even with thebraces and crutches to help me walk as smoothe was gone and
uncertain walking was there every day.Now this year I feel safeer in my wheelchair
than walking.My fatigue is more and rest is required more often.
Now in 2007 my eyes have taken a turn for the worst and I can see only large print.
My eyes can also only take limited use at close range.Making forcasts I see
eventually the end to my driving a car due to dropping of eyesight .

Now i started this article that in SPMS you will need more help I guess you now
see what I mean by more help.My GP doctor also thinks I need to see him every
3 months as he said your body needs more attention before bad things happen.
RET

clinical deteration; a term that neuros throw about with patients
Over the last20+ years I have seen changes take place in my self But untill recently I was never put in to the language of Clinical deteration;with regard to Ms it meants a faster deteration than you have been used to before .My neuro predicted a full time wheelchair as a necesity for me soon within this year (2007)
He did a whole series of tests and came to this conclusion with the fact I have shown more damage every time I come to his office in the past three years.
I have more up dates on my wheelchair sections .But keep in mind that needing the constant use of a wheelchair isn't the end of your world

I sat in one from early 1995 to late in 1997 thinking it would never end .At that time we had our present home completely made wheelchair accessible.I did have one of my best painting and drawing times and also sold the most then because I was focused that way.
We also covered a lot of travel in two continents .One in Europe with a 18 country trip on a coach (bus) I did well and enjoyed every minute.Once you change your priorities you will do fine I keep telling myself.
RET

1. After 20 years of MS both groups PPMS and SPMS reported
that nearly all of us need either wheelchairs or scooters.
Many were part time but still the full timers were
nearly all the PPMS individuals.
The number of SPMS needing wheelchairs full time was about half.

The rest of us need them part time which can mean anything from just at malls
or other great distances.Many of us in this second group are constantly think
we are approching the day when we will need them full time.

But some of us find we have days when it is convient to just stay
in the scooter or wheelchair for the day. In fact many of us have
althought not at present have spent months in a wheelchair or scooter.
The upper limit of the part-timers was two years..Also surprizing was
the numberof people with special vehicles for wheelchairs.About 1/2 of
the full time user. The rest of the full time users had some-
one to put it in the trunk.
2. But as a percentage it was over 60% in the survey needed
a wheelchair full time at the present.Of those in this group,
many had power chairs.These were usually the ones with special
vehicles About half of the group did have the power chair
or scooter.

3. In the group like myself who are part time in wheelchair
or scooters Nearly all of us need assistive devices such as
crutches, walkers and or AFOs.Most of us confess our walking
range is under 200 feet before much fatigue starts to get to
us.But it was surprizing that one individual could walk
with crutches (forearm) several miles a day. no it wasn't
Zoe Koplowitz. She is good for 26 miles.But unfortunately
not part of the survey. I wish she was.

4. Some where along the way some doctor reported that there
usually is from 2 to 6 new plaques on the spine or brain in
all of us in either group, PPMS or SPMS. There was no illusions
among any of us that this disease could be stopped dead
in it's tracks. Only about half a dozen of the respondant
are still using just a cane.But several of these admitted
a walker was in their plans soon.

5.The majority in fact almost all of us are taking some
medication to limit the progresion. It was either one
of the ABC drugs or Novatrone. Only 4 were not taking
any thing to limit progression.

6.Of all that responded none have any illusion of any
turn back. That idea of remissions is for the R/R types.
Many in the PPMS had been affected soon after their diagnosis.
Few of us are still working full time in fact only two
were over 30 hours a week.Most of us are totally retired.
In fact nearly all of us who are retired had to before
the usual age say 62 to 65.
A minority of us have what would be called a good income,
that is in excess of $2500 a month.The better off also
owned their own home The vast majority of which were accesible
they said.

7.It was surprizing how many are living alone and making
it daily.Most only needed minor help daily. minor help means
having some one come in daily for not over 2 hours. Most of
these were needed for chores about the home or to do
personal things like help with dressing or bathing. Most
of us had some one to clean the home.Only four were in
assisted living situations.
8.Actually about 60% of us still have a spouse about the home
who for the most part is very supportive to us.But unfortunately
many had lost their spouse through walk out or divorce.
Only 5 had lost due to death.

9.Nearly all of us have some form of physical therapy.
The most common is in the water. Many of us love to
swim.The percentage in the water was 72%.Some went
to wellness centers where most of the ones using wheelchairs
had to be lowered into the water by a special seat.But
something was being done to keep atrophy from being too
fast.All that talked about their physical therapy seem to
believe that it would also help to delay progression.

10.Of us who need the most help with our mobility or
among the full time wheelchair users we have power
chairs or scooters.Our doctors have been kind to us ,
seeing we got prescriptionsto order such.All of us
with such love them.I heard nobody resentful of having
powered mobility.Some wer frustrated with the
accessibility or lack of it still in our world.
11. The vast majority of us have bladder problems.
The most common is we just can't hold it any more.

Nearly all the males who have bladder problems have
a bag to catch it. We largly dislike the Depend.
The females didn't say much to me only that they
had a problem.

12. I was shocked by the number of us who don't
drive any more ,mainly due to poor eyes or lack
of good arm control. The rest of us who are still driving
nearly all have hand controls as is required in all
states.for those of us in either group.
Lack of money seems to also ring in as a reason for
not driving.This fact of lack of money was mentioned
almost more than any other factor as another reason
for their misery with MS.Does being well heeled make
it easier?

13.Most who didn't have a spouse were struggling with
fianances.Not that a spouse was an automatic road to
wealth but at least not poverty.Those on Social Security
disability are at the greatest disadvantage.These
on SSDI are sometimes having more problems with money
that the disease.Just paying bills was all they could do.
If we are still married and have able bodied spouses
we have the best life styles and do the extras.
I enjoyed doing this survey and hope it gave you some
enlightment.It certainly did for me. I loved answering
and hope for you the best in the future. I'm still open to
e-mail any time at RET1000@aol.com
One more thing. I was pleasantly surprized that nearly
all of the 67 respondents has made good adjustments to all
the changes the diseas brings. There was nobody with
overpowering bitterness.Acceptance is one way to getting
on with your life. RET

Eileen Lukeman and Richard Tanner

FL.

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

Visitors: 03136

Page Updated Mon May 12, 2008 8:06pm EDT