Kay's MS 1992 - 2009
Kay's
MS
In early
January, of 1992, Kay awoke and was numb from her
armpits down. Over the next week she had
a variety of tests and finally the neurologist told us she had Multiple
Sclerosis (MS). He told us that we were
lucky and that the MS symptoms would
start to go away in the next few weeks and she would recover about 95%
of her
abilities. Then, in 6 - 10 years she
would probably have another attack and would recover about 95% of her
pre
attack abilities. At 45 that would give
her a long and fairly good life. Not the
greatest news but we could live with it.
Sure
enough, in a few weeks she started to get feeling back and we were
greatly
relieved. But, by the end of January she
lost her far vision. As that started to
return she had another motor function attack.
As she started to recover from that, she lost her short vision.
Each
time she recovered but not as much as we would have liked.
By August, she was out of work, totally
disabled and legally blind. (We were lucky it was only MS?)
Her
eye sight improved a bit but in November she had to have a gall bladder
operation. The big problem would be
the anesthetic. They had to use special
kinds for people with MS. In 1/3 of the cases peoples MS symptoms improved after use of the anesthetic. Another
third stayed the same but with about 1/3 of the people, they got worse. She decided to go ahead because 2/3 were in
her favor WRONG! After the operation she got worse and her sight
declined and
didn't improve.
In
a matter of just a few months she went from being super wife, super
mom, super
sister and daughter, super neighbor, super friend, super volunteer to
being
totally dependent on others. Her motor
functions were very poor and she couldn't see to read a book, drive or
watch
TV. She did, though, have just a little
peripheral vision. So, she could see a little to get around the house.
I,
too was a basket case. I would have done
anything, gone anywhere, spent any amount of money to help her. We looked into procedure after procedure and
scam after scam. Searching for a thread
that might turn into a string that might turn into a cord that might
turn into
a rope we could cling to. Nothing. A big
negative was the fact that the MS associations, local and national,
kept
repeating there was nothing we could do.
In
December we got a card from a friend who told us about someone they
knew who
used to have MS. "used to" have MS? No way!!!
We knew recovery was not possible.
Then in February, I decided a phone call couldn't hurt to I
called the
guy. He had been bed-ridden until he
went to Germany for treatment. Now he
was OK and even drove his car. He told
us of others who had received a great deal of help from Germany and he
gave me
the name and phone number for the Brewer Library.
I
called them and they gave me the names and numbers of 10 or 12 people
around
the country to call about the treatment.
I knew that they wouldn't give me names of people who would say
the
treatment was a scam but I called them anyway.
The list
included Drs and professional
people. Based on what they told me I
couldn't ignore the treatments. The
people at the library helped put us in contact with Dr. Hans Nieper (he
recently died) and we made arrangements
for Kay to go to Germany with her mother.
I didn't really think it would work but I couldn't refuse her
the
opportunity to try.
During
the call I got on her 3rd day there, she told me she had
walked 5 or
6 blocks and she felt great. (The
hotel bill was more than the Dr.s bill)
She
was so improved I couldn't believe it.
Although her eyesight hadn't improved as it had for others who
had the
treatment, her motor functions were greatly improved.
So, for the next 5 years we imported the
liquid from Germany and she received three shots a week.
Sometimes the drug enforcement people
confiscated the material but it usually got through OK.
When it was
held up, I wrote to them and they eventually sent it on to us.
Some
people are NOT helped by the treatment.
Most we know of, though, have been.
A lady was bed ridden for 18 years and now you couldn't tell she
had MS.
Another lady took the shots for 1 year and a half with no results.
Then, one
morning, she woke up and she was better.
Annette went and didn't receive help but she didn't continue to
take the
shots.
Personally,
I think it is like bee sting therapy. It
works on some and doesn't on others. If
I had MS, though, I would go to Germany in
a second. I wouldn't take the chance
of not trying it. I would also try the bee stings.
It has worked for hundreds of years for lots
of people and we knew an MD who kept a hive for his own MS.
Then
to top things off, she had to have a bladder operation. Because she had
MS they
used special drugs to knock her out. Even then she had a negative
reaction to
the stress and went down hill a bit.
Here is info
about the Brewer Library.
The library
is: A. Keith Brewer International Science
Library
325
North Central Ave
Richland
Center, WI 53581
(608)
647-6513
They will
give you names of people to talk to. If
you decide to go they can put you in touch
with a travel agency that is very helpful. Also, call Kay.
Really. Feel free to call Kay at (925)
672-3470. People at the library can also
provide the name of a good travel agent that helped us get there and
back.
8/99
update
Kay is on ZOLOFT. It
keeps her attitude OK but the side effects are a bummer. It . .well if
you take
it or have a very close friend who takes you know the main negative
side
effect. A real negative but it keeps her
alive.
Kay's father had a
heart attack and died. The stress was too much for her and she has
declined a
bit more.
However, I am looking into
procarin and we will try that for a few months.
10/1/99 We have started procarin
and look forward to great improvement.
12/99 We stopped procarin. No
benefit
1/2000 Started again because of
a new treatment of procarin but it didn't work either
By March
of 2000 We had spent something like $1,000 on procarin with no
results of any kind. (I joke, That could have bought me a lot of
Tequila)
Needless to say we stopped
it .. The biggest problem is the "let down" after being so full of hope. However, the other side of the coin is that
MS is very different for each person and so are things that may help
AND, if
we hadn't tried procarin there would always be that "what if" question
in the
back of my mind. So,
that
it didn't help Kay is no reason to not try it.
OCTOBER, 2000 Kay has
lost the use of her right hand and
arm and most of the use of her right leg/foot. But she can still get
around the
house with a walker. If we go out it is
with a chair..
March 2001
Kay
has been exercising
daily with a stationary recumbent bike.
The strength in her legs has improved and so has her feeling of
self
worth.
July, 2001
Well, we are still at
it. Lucky I could "retire" at such a
young age so I can stay home and care for Kay.
We were told we should get an electric wheelchair for Kay but
the added
expense of getting something put on the car to carry it is too
expensive.
Insurance will not pay for a carrier. Only the chair.
Oh, well.
February
2002
We got a flyer from
the local MS Support Group and in it was a small item about a test of a
new
drug called Rebif. The Dr. in charge
of
the local testing is Kay's MS Dr. so I called and on 2/5 we went over
to find
more about it. We were told that
Rebif is better than Avonex and that the
test would go on for 6 months. At the
end of the test if Rebif wasn't approved in the US they would continue
to
supply us with it until it is approved which they hope will be early
2003.
From what they showed
us and what I've found on the WEB Rebif slows the progression of MS
better than
Avonex.
We
started it on 2/12. Three shots a week but the needle is only about
½ inch. We'll see how it goes.
As of
June, 2002 I am giving her three shots of Rebif a week.
Her attitude seems pretty good but that is
because of the ZOLOFT. Without Zoloft I
am sure she would have ended her ordeal years ago. She doesn't talk to
me about
it but has to friends who have shared that with me
May 2004
Kay fell and broke her right
fibula. She was walking to her bedroom
using her walker when her right leg just gave out and down she went. Thought it was alright but a nurse told us we
should go to the hospital anyway just to make sure.
We were wrong and it's a good think we had it
checked out. Lucky we just got the
electric wheelchair. She will not try to
walk again (even with a walker) just to make sure she doesn't fall and
do worse
next time.
June 2005
Kay is in the electric
wheelchair permanently and has adjusted to it pretty well. She "could"
walk
with a walker but prefers to be safe. I
marvel at her continuing positive attitude.
October 2006
Kay's Mom
died in
September. It is a very difficult time
for her.
2008 Dr wanted Kay to go to
Physical therapy. Kay DIDN'T want to but said she would go once and
then cancel
the rest of the appointments.
She liked the lady therapist
and decided to go a second time. The
therapist was so encouraging that we started going twice a week. Within 6 weeks Kay took her first steps in
four years. Sure. It was between the
parallel bars but she took steps.
January
2009 Kay can walk ten
feet up the parallel bars and back four times. That's 80 feet. Amazing!
WE are
so happy. She will never be able to walk unassisted, but this sure builds her spirits.....
April 2008
Kay has more and more difficulty getting from her Lazboy recliner we are going to have to get a new one that is electric and will help lift her up. She can't stand but it may lift her up to where it will be easier to get back to her wheelchair.
We have a new Lazboy recliner for Kay. We have a long couch will recliners at each end and we both had individual recliners but now Kay has an electric one. Of course the leg lift helps with circulation in her legs but now she has a lift to help her and a massager that will also help with circulation. It's one of the best things I could have bought for her.
March 2009
Kay is
now taking Betaseron. Our
co-payment for Rebif was up to $593.00 a month and that was just too
much. Better than paying the $2,370 full
price but
still. The Betaseron a lot lot lot less
expensive.
July 2009
Kay fell twice in one
week. Because she has so little feeling in her right side she didn't
realize
she was hurt until I saw her ankle swell up.
Cracked two bones in her right foot and ankle. Big set back for her trying to walk.
September 2009
Starting all over, again to
try and walk along the parallel bars.
Probably another four weeks, or so to build her back up to
walking but
she is working at it.
OOPS! Kay's recliner stopped working for the third time in 17 months. It is so difficult for her without it. I'll probably go to Penney's or somewhere to get an inexpensive recliner to have in reserve for when the electric one goes out. The weekend was very difficult without a recliner that worked. A service tech. came today (the 22nd). He plugged the chair back in (I had disconnected it Friday when we couldn't get it to work) and everything worked just fine. LaZboy went to a lot of trouble to get someone here ASAP for Kay and then all he did was to plug it back in. I'm just shaking my head. Why didn't it work Friday evening????
9/21 My birthday and Kay walked two steps at therapy, this morning. Great birthday present.
Where does the time go? The last entry was 2009 and here it is 2013.
Since Kay started walking between the parallel bars she increased her ability to walk, holding on, that amazed us Then in 2011 she fell and couldn't use the bars for a few months. When she started up, again, we were thrilled and she was so grateful. Last year, she fell, again, and has not walked since. She wants to, so bad but is concerned that her leg will buckle again and she doesn't want to fall again.
Although she is still sitting in front of the big TV listening to books on tape and watching QVC, like she has for the last 21 years, her attitude is remarkable and up beat.
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