Editor's note: This page represents an ongoing journal of Bob's
experiences with the Intrathecal Baclofen pump as treatment for
spasticity for HSP. Bob is 51 and has had symptoms since childhood
with a more rapid progression since age 30. The SPF conducted a Baclofen
Pump Survey and 31 individuals responded to share their experiences. See
Survey Results.
Feb 2001
On Feb 6, 2001, I had my screening trial for ITB therapy. Prior to the
trial, I had tried the oral drugs and had the same experiences that
others, on this site, have reported--minimal change, if any, in
spasticity and severe drowsiness.
I arrived, was taken to a room, temperature, blood pressure, etc. Dr.
Smith stopped by at 9, said "hello", came back at 10, tested me for
spasticity, had me lie on my side in fetal position, injected an
anesthetic, and injected the baclofen. He came back a little after 12,
and tested me for spasticity. The baclofen had worked as anticipated and
I was told that I could leave whenever I was ready. I left at 3:30, with
still a lot of residual weakness. The strength and the spasticity came
back entirely early the next day.
While with me, Dr. Smith made it clear what difficulties I would be
facing when using the baclofen pump and the limits of what I can expect.
He wants me to come back to him and definitively assert that I want the
pump implanted.
May 2001
The next step was to schedule implantation. The date was April 11. I was
admitted to the hospital for pre-op testing on April 10. I went into the
operating room around 11am on the 11th. The operation was done and I was
discharged on April 12.
Walking was tough. I needed my cane for both balance and support. At
home the next morning, I had intense pain in the back of my right leg. I
got nowhere with the offices of the neurosurgeon, nor the neurologist
because it was Good Friday. So, it was rest until Monday. The pain
subsided.
This wasn't what I had expected, because the neurologist told me that I
would be ready to return to work on Tuesday. I thought that the weakness
was a consequence of the surgery and that it was a matter of waiting to
heal.
One pleasant note was that when I laid down and put a pillow under my
leg at the knee, as the pain subsided, I felt an exhilarating feeling on
my shin, like someone was slowly stroking it with a feather.
Another pleasant sensation was sleeping all night without being summoned
to urinate. That has been an annoying issue for the last two years.
Monday, I called the neurologist's office about the pain. The sent me to
my general practice physician. The prescription was sodium naproxin and
rest. OK.
That Friday, I went to the neurosurgeon's office and had the staples
removed. I was told that I should return to work the following Monday.
(I teach in a high school).
Monday, I returned to work. It was really tough. I knew that I couldn't
put weight on my leg for significant periods of time, my balance was bad
and walking was strenuous, but I figured that this would be a temporary
price that I would have to pay.
Thursday, two weeks and a day after the operation, I saw the neurologist
who was surprised to see the difficulty that I had walking. He then
tested me for spasticity and everything became clear. What had happened
was that he had intended for my initial dose to be 50 micrograms per
day. That was not communicated to the neurosurgeon who set the dosage
for 100 micrograms per day. What had happened was that my spasticity had
nearly been eliminated, which made walking strenuous and painful. My
dosage was reset for 75 micrograms per day.
That's what's in me now. Walking is still strenuous, but it is not
painful. Balance is still difficult. I still use the cane for nearly
everything. The bladder issue is at some half-way point. I am not
summoned to urinate as frequently as I was before I had the pump, but it
is not back to "normal".
I shall stay at 75mcg/day. My goal is to be able to walk from my doorway
to my automobile without the cane by the end of July. If I can do that
I'll stay at that dosage. If not I'll ask to be dropped to 60 mcg/day.
Physical therapy starts tomorrow.
Aug 2001
Unfortunately, in mid-June, the catheter which connects the pump to the
spine came out of the spine. I knew that something was wrong because all
of a sudden the walking became more sure-footed and bladder issues
started to recur as well as difficulty falling asleep because of the
buzzing in the legs. Last Wednesday, August 1, the surgeon opened up my
back and reinserted the catheter, hopefully more securely. Before
surgery, he told me that the probability of the catheter coming out was
very small in the first place. Now that it is in more securely, the
probability of it coming out again should be very close to zero. The
dosage was set to 50 mcg/day which it what it should have been back on
April 12.
What have I learned that I can share? First, make sure that if you go
with ITB therapy, stay close to home. I live near White Plains, NY. The
doctor who recommended the pump is in Staten Island, NY, an hour and a
half away. I would have hated making all those trips, so I'm glad that I
found a local neurologist that knew something about ITB therapy.
Second, I've gone from no baclofen to 100mcg/day to 75mcg/day to none to
50mcg/day. Each of us is different. For me I have three spasticity
measurements, walking, bladder control, and ease of falling asleep. With
regard to walking, I walk best when I'm spastic because that's how I've
learned to walk. The more baclofen, the more strenuous walking is.
Hopefully with physical therapy, walking will become less strenuous as I
build the proper muscle. With regard to bladder control, which only
became a problem two years ago, there is no problem at all at 75mcg/day
or more, and now, at 50 mcg/day, it's just a small issue. The same is
true with falling asleep.
Thirdly, recovery isn't only nerve and muscle. There is also something
intellectual involved. In the days immediately following the revision of
the catheter, I was summoned to urinate, when there wasn't much in the
bladder. I realized that one part of the brain was telling me to urinate
and another part was telling me that with the baclofen, I really didn't
need to urinate. So, I took my chances. Eventually the part of the brain
that tells you that you have to urinate learns that it was reacting
incorrectly and changes it's behavior. Similarly, a little at a time,
falling asleep is getting easier. Walking may turn out in similar
fashion, but over a much, much longer period of time.
I'll comment on physical therapy in another journal entry.
November 2001
This is my fourth entry to my intrathecal baclofen therapy (ITB)
journal. To recap, I had the screening trial on February 6 of this year.
the pump was implanted on April 12. The catheter came out of my spine in
mid-June. It was put back and secured on August 1. My current dose is
60mcg/day.
One of the things to consider is getting the reservoir in the pump
refilled. I thought that this would be a tremendous hassle, with me
schlepping every three months to my neurologist's office. It turns out
to be much easier. Since most people who use the baclofen pump are less
mobile than I am, there exist infusion services which come to the
patient's home and drain and refill the reservoir. Without the
paperwork, it's less than a half hour.
That's the good news. I am also lucky enough to be in a health plan
where these services are provided, so it's just a matter of scheduling.
I've read postings here on the list where people have to deal with
paying for this service. I don't have a clue how much it cost, but it
must be expensive. So it pays to make sure that you have a way of paying
for infusion as part of the overall cost structure of having the pump.
Another thing to consider is physical therapy. When the spasticity is
greatly reduced, the patient is greatly weakened, because he now has to
use undeveloped muscles. To develop these muscles you need physical
therapy. Once again, I am fortunate to have a medical plan which pays
for forty visits per year. (The previous terms were 25 per year, and
when I reached visit 20, the terms were renegotiated up to 40). But that
may not be enough. I will be covered for the rest of this year, but at
the rate of two visits per week, I will use up my forty visits in the
first twenty weeks of 2002. I will have to think up some alternative way
of doing things and when I do I'll report it here. The cost of physical
therapy and the time for the visits and the time needed for home
exercise must be considered before having the
pump implanted.
Now, about the weakness. I teach mathematics in a public high school.
Teaching, and all the preparatory and administrative running around,
involve a lot of time on one's feet. It was tough before I had the pump.
It is much tougher now. Because I am slower, as I am learning to walk
with different muscles, and relearning how to keep my balance, I do less
than I did before, and use much more energy doing it. At the end of the
day, I find that I have accomplished much less then I used to and that I
am feeling physically exhausted. The students are doing poorly as a
consequence and I am feeling demoralized. I have brought this to the
attention of my supervisor, who has brought it to the attention of the
principal. I have a meeting with him on Friday. I'll leave you in
suspense until my next journal entry.
February 2002
In my last journal entry, I described how the weakness, resulting from
the fact that I need to use muscles that are only poorly developed, was
effecting my work performance. (For those who want to see my prior
journal entries check out sp-foundation.org). I teach math in a high school.
My supervisor, the principal and I met in early November. My wife
suggested that I take a medical leave of absence for the purpose of
rehabilitation. I have 126 cumulative sick days. It was agreed that with
my neurologist's blessing I would take the leave. The neurologist wrote
the appropriate note. On the Tuesday following Thanksgiving I started my
medical leave.
The first thing that I found out was how incredibly fatigued I was. I
made certain that I did two hours of quality exercise each day, at 8am
and 2pm, but apart from that, I spent 20 hours/day lying down around 16
of them sleeping. That lasted for about the first two weeks in December.
Then I started to lie down a little bit less and to sleep a little bit
less. Now I sleep about 12 hours/day.
Another issue was pain. Because I had been leaning on a cane, which I
held in my left hand, my left hand, arm and shoulder and my neck were in
pain. Also, because the left leg was bearing the rest of the weight, I
had pain in the lower back on the left side. The pains in the arm have
slowly subsided as a consequence of taking naproxen sodium, of not being
on my feet, and of massage therapy. Here in the beginning of February
the pain in the arm is gone. The lower back still hurts.
But there's another element to the pain issue. In order for the pain to
not return, I need to walk without the cane. I walked without the cane
until December 1999. At that time I did not have the pump and was
spastic. (I started using the cane because I slipped on the ice and tore
a muscle in my right thigh, and I wanted to take the weight off that
leg). Now I need to be able to walk without the cane, with the pump and
much less spasticity.
Part of being able to walk is strengthening whatever it is that I need
to strengthen. For this I put my complete trust in physical therapists.
My exercise routine is comprised of different things that physical
therapists told me to do. As stated above, I have exercised religiously
twice a day. At the beginning of December my physical therapist told me
that we had gone as far as I could go until I got my ankle-foot
orthotics(AFO). Coincidentally, we had arrived at the last PT session
that the health plan would pay for.
I had worn orthotics beginning somewhere around 1991, until spring of
1999, when my physiatrist felt that my spasticity was "fighting" the
brace. Screws kept coming out. The instep strap would work its way
loose, etc., etc. He put me in orthopedic shoes. Last summer, when the
physical therapist recommended AFO's, I wasn't going to do it until I
got the blessing of the physiatrist. The physiatrist wasn't aware that I
had the baclofen pump implanted. When he saw the consequences of my
having the pump, he wrote a detailed prescription for the physical
therapist and for the orthotist. It took until early January for me to
get the orthotics, properly adjusted. Now I was ready to resume PT, but
had to wait another week for my first appointment.
So, during the period from about Dec 10, 2001 to Jan 20, 2002, I'm home
from work on medical leave, I'm not going to physical therapy, I am
exercising two hours a day and resting the remainder. The mind has had
enough rest and it starts getting restless, and I'm thinking about
becoming more knowledgeable and more "activist" in my rehabilitation.
I know that (1) I am much less spastic than I was, (2) the muscles that
I need to use are weak, (3) muscles that I used when I was spastic are
abnormally strong, and (4) my method of walking is a bad habit. How do I
change? There is really no roadmap, that I am aware of, that tells us
how to do this. The HSP resources on the web don't have much about
rehab. Where do I go?
There was a show on PBS' Scientific American Frontiers having to do with
spinal cord injury, which had I thought might be useful and I had
purchased the videotape. I watched it a segment at a time and went back
and forth to the PBS website to find out more. I followed their
hypertext links to other sites and I threw names and phrases into search
engines to find out more.
What did I find? I found that my (or should I say "our") rehabilitation
is on the cutting edge of science. At the November HSP conference in
Philadelphia, I asked Dr. Fink the question stated earlier, or something
roughly approximating it. His answer was, to the best of my
understanding, to develop the muscles that promote hip flexion, and that
everything else takes care of itself because the stepping mechanism is
programmed into the spine. If you properly stimulate an unconscious
cat's spine, its legs will move as if walking indicating that the
walking mechanism is not stored in the brain. A serendipitous discovery
at the Miami Project to Cure Paralysis led researchers to believe that
the same is true with humans. Since then, they have been experimenting
with trying to wake up or restimulate this "central pattern generator".
However, the difference between us and spinal cord injury patients is
that they were walking just fine and then all of a sudden they weren't.
We, as our spasticity worsened, learned to walk to accommodate that
spasticity. We learned how to walk "incorrectly". Isn't that incorrect
walking pattern the one that is programmed into our central pattern
generators?
PBS also had a show on Nova about the work of Dr. Ramachandran. This
brought me to the library where I borrowed his Phantoms In The Brain.
While there, I borrowed John E. Dowling's Creating Mind. Ramachandran
mentions a stroke patient who smiles when a friend enters the room. When
the same friend asks him to smile for a photo all he can generate is a
contorted mouth. Why? Because the first smile is generated by the inner
ganglia of the brain which was not damaged. The "volitional" smile, for
the camera, is generated by the motor cortex, which was damaged. Now,
when at PT, the physical therapist asks me to walk on a treadmill with
my foot landing heel first, I can do it 100% of the time as long as I am
thinking about it. The minute I think about something else, I land toe
first. Aren't I the converse of the stroke patient? So maybe there are
two parts of the nervous system involved in gait control. The central
pattern generator maybe isn't the only thing involved. Isn't my gait
training like a teenager learning how to ice-skate? Does that learning
take place in the central pattern generator or somewhere else? Dowling
says that motor learning is programmed in the cerebellum (for things
like riding a bicycle or rowing a boat). No matter where the learning is
though, I am not learning from scratch. I need to break bad walking
habits developed over the last fifty years. How is that done? Nobody
seems to know.
May 2002
In my last journal entry, I had reported that at the end of November, I
had started a medical leave of absence from my teaching job for the
purpose of rehabilitation, that I had resumed wearing AFO's and that I
had resumed physical therapy. It is May and I am still on my leave of
absence. My goals were to eliminate pain, build strength, improve my
balance, improve flexibility and develop stamina.
The pain dropped by 60% in the first month, and at the end of January I
was dealing with only one-tenth of the pain that I had at the end of
November. The pain was gone from my left hand, arm and shoulder. (This
pain was due to leaning on my cane). The pain that lingered was in my
lower back on my left side and was much less than it had been. I was
confident that in due course it would be gone. That didn't happen.
During March, there was increasing pain in my left quadriceps, the pain
in the lower back increased, and I started to develop pain in the left
hip flexor. This kept going on. I discovered part of the reason for the
pain in the quadriceps. At physical therapy I was working on a jogger, a
cardio-vascular exercise machine. I discovered that using it the way I
was using it was counter-productive to my goals and general health. I
found that if I concentrated on putting the weight on my heels as I
stepped, rather than on the front of my feet, that my gluteal muscles
and my hamstrings were getting the intended workout. In my spastic gait
pattern, because the gluteal muscles and hamstrings are weak, the wait
falls on the front of the foot, the quadriceps does the work that the
gluts and the hamstrings should be doing, and gets developed, and also
gets tired and sore. Once I discovered this, I changed what I was doing
and concentrated on putting the weight on the back of my foot. The pain
in the quad didn't get worse, but it didn't get any less. Then,
fortuitously, I found out what else was contributing to the pain. I had
read that lying on one's chest while sleeping is bad for the back. I
cannot lie comfortably on my side. So, I have been laying on my back.
But if one spends the entire night on one's back, night after night, he
is constantly stretching the quad and it never relaxes. I started
sleeping with a pillow under my legs and within days, the pain in the
quads went away. I am still suffering with pain in the left lower back
and left hip flexor.
In the beginning of December, I was discharged from physical therapy,
being told that I had done all the strengthening I could do until I got
my AFO's. I continued my home exercise routine, got my AFO's in early
January and returned to physical therapy in mid-January. I had been
mislead. When I came back, I found out how weak I was. I also began to
address the issue of range of motion. I got on the right track with more
stretching and strengthening, but I began to realize the magnitude of
the task that lie before me. By the beginning of March, I had made
significant measurable progress in terms of strength and range of
motion, but there was so much more to do. There were muscles that I
didn't have a clue how to use or how to develop, for example, muscles
that are used to move the pelvis. Also, when it comes to walking, I may
have increased my hip flexion and my dorsiflexion, and I may have
strengthened my gluteal muscles and hip abductors, but turning that into
walking involves learning how to put weight on one foot at a time, how
to land heel first, how to get you leg to move without circumduction
(when it seems like the thigh is welded to the pelvis at the hip) and
many other things. Because there wasn't improvement in functional areas,
I was discharged from physical therapy in early April.
The balance issue is still unresolved. There is little point in working
on flexibility until I have balance.
I joined a health club. The exercises that I learned while going to
physical therapy I do on alternate days at home. They take two and forty
minutes, net of breaks. On days when I don't do the home exercises, I go
to the health club, working on an EFX machine, and various Nautilus and
Nautilus-like machines.
When I realized that strengthening, all by itself, was not going to
bring me to stepping, I needed to learn how to change physiological
behavior. I have started working with an Alexander Technique teacher,
whom I now see once a week. Where I was doing my physical therapy, they
started to include propriceptive neuromuscular facilitation, which I
thought was great. But then they slammed the door on the treatment
because my stepping hadn't improved quickly enough.
Right now, I am unhappy. I haven't lost any pay, because of all the
accumulated sick leave that I had. But if I had to return to work
tomorrow, I would be feeling that I have accomplished very little. The
pain would probably come back. I would not have the time or strength to
do all the quality exercise I do now. I would make best efforts, hoping
that if I couldn't further improve strength and range of motion, that at
least I wouldn't go backwards. I will have to return in September. I do
not know where my rehabilitation will be then. I am not optimistic.
What does this mean to people who are considering having the pump
implanted? It means that the rehabilitation strategy should be planned
in detail with a neurologist, a physiatrist and a physical therapist. It
should begin with an assessment before the pump is implanted, to see
what kind of work can be done at that stage. It should include an
education in the relevant aspects of physiology. It should include
training to develop a kinesthetic sense, so that a person can learn to
understand what his body is "saying" to him. (This has been a major
shortcoming in my rehab.) An effort should be made to develop muscle,
where needed, where the muscle can be isolated. I have found that if we
ask a muscle to do a task, and the muscle is too weak, the central
nervous system will find another muscle to do the task. In so doing we
develop the wrong muscle and worsen our condition.
Once the pump is implanted and spasticity is reduced, another, more
thorough assessment should be done. Something that hasn't been done with
me, but may be considered, is experimenting to find what baclofen
titration would be optimal for rehabilitation. The rehabilitation
strategy should be modified. In addition to customary strengthening and
range-of-motion work, the following should be considered: Proprioceptive
Neuromuscular Facilitation, Neuro-Developmental Treatment (Bobath
concept), Alexander Technique, working with body-weight support and/or
with functional electrical stimulation. Add to this list anything that
you have found that I don't know about, maybe Dr. Taub's strategies with
stroke patients at UC, Irvine, for example.
Also, when we find out what works and what doesn't, let's share the
information. Your eyes are probably tired from reading this message, so
'bye for now.
Aug 2002
I have now had the pump working without interruption for a year. I am a
teacher, who had a lot of accumulated sick time and was able to take the
period from Thanksgiving, 2001 to the present off for rehabilitation. I
needed it. Anyone whose job is somewhat physically demanding, or who is
raising children, will find the rehabilitation work nearly impossible.
One positive development is that I found a professional who has taken a
"personal" interest in my rehab. She is an Alexander Technique teacher.
I recommend Alexander Technique, but I don't recommend anything
exclusively.
Alexander Technique attempts
to make the client aware of misuse, and aware of alternative ways to do
"ordinary" tasks. The teacher also brings in things outside of AT to
help in my rehabilitation. This work is all being done outside of
managed care and I am being charged a reasonable amount of money.
Managed care physical therapy
has its limitations. Even though a physical therapist may take a
personal interest in a patient, one hour per week just isn't enough, and
the PT is constrained by the way the managed health care machine
operates. Because it is very results-oriented, it favors short-term
solutions, which in my case, would be counterproductive in the long run.
Alexander Technique calls this end-gaining.
But the point to be made is
that it is necessary to find someone who takes a personal interest in
you, be it a neurologist, a physiatrist, a physical therapist, or
whoever, and one may probably have to go outside of managed care to find
such a person.
Another positive development is that, at long last, I have developed and
improved my kinesthetic sense. For years my message therapist has been
saying "Listen to your body". I would grunt to the affirmative, while
thinking to myself that I can hear my body talking, but I don't
understand what it is saying. When I felt something I didn't know
whether I had hurt myself, or whether I was in the process of hurting
myself, or was sore from working too hard, or just getting a good
workout.
I have started to gain an
understanding. It has taken months of rehab work, but things are
starting to click in this regard. Had I had this sense at the outset, I
would have made fewer mistakes in my rehab program. A kinesthetic sense
is to physical rehabilitation as learning to read is to academic
education.
A symptom of HSP that for me is profound is the way that the thighs seem
to be welded to the pelvis at the hip, and that the torso is used to
lift the legs. I am breaking out of this.
I walk with two canes. Walking with one or with none looks more
impressive but it was doing more harm than good. My hip flexor was in
perpetual pain. With two canes my entire foot lands on the ground, 95%
of the time, with heel strike, followed by weight distributed over the
arch and the fifth metatarsal, passing on to the front of the foot and
the toe whence it is lifted. The right arm goes forward with the left
foot, and the left arm with the right foot. The spine is lengthened and
there is a feeling of broadness across the back from shoulder to
shoulder. This is all part and parcel of getting the legs to move
independent of the torso. I have been doing a lot of work on the proper
way of sitting down and getting up from a chair.
This is all working well because most of the time that I move I make
conscious efforts to move correctly. This will be hard to do working in
front of a classroom in September. When not thinking about what I'm
doing, I will lapse into bad habits. How will this be avoided? I was
introduced electronically to a professor of physical therapy, who I met
this past May at the Connecticut Connection. She suggested to me that I
teach from a scooter. I am on the path to obtaining a scooter or a
motorized wheelchair, not for the purpose of mobility, but for the
purpose of not developing bad habits. I will report on this in a future
journal entry.
My baclofen titration has remained level since January at 70mcg/day.
Things are working well with the AFO's. Because plantarflexion is
limited with the AFO's, but is necessary for the swing foot to land
properly and take weight, I no longer wear shoes with an ordinary heel.
Rather, I am wearing New Balance sneakers. They work wonderfully.
November 2002
I am a teacher and I went back into the classroom at the beginning of
September. After dealing with some technical problems, I started
teaching from a power wheelchair, using a laptop computer and a
projector to "write" at the board. It worked fairly well until the
laptop was stolen. Now I am writing at the board with chalk, while
seated in the wheelchair. It's not as effective, but until the
administration replaces my laptop, or gives me a secure place to put my
own replacement laptop, that's the best they are going to get. I also
have two classes of less-blessed students. For them, the wheelchair is a
distraction which takes them off task. but if the wheelchair weren't
there, they would find something else to take them off task.
When not in the classroom, I am still walking using two canes. I am
still receiving instruction in Alexander Technique (AT). My exercise
routine includes a walk each day except Wednesday and Thursday, twice a
day on Saturday, in which I concentrate on AT principals and things I
have learned about stepping. Twice a week I go to the gym, spending
thirty minutes on the Stair-master and about thirty minutes on Nautilus
and similar machinery. Three times a week I do an hour's worth of
exercise I learned in physical therapy, and three times a week I do an
hour's worth of AT work.
Progress is slow, but every once in a while there is a surprise, when
something is all-of-a-sudden easy. Usually I cannot replicate the task
with the same amount of ease, but I am confident that some day I will.
My main learning task now is to get the limbs to move independently from
my torso, and independently from one another. Little by little, I am
succeeding.
February 2003
As I suspected, it is difficult to keep up the rehab regimen that I had
given myself while on medical leave. Fortunately, I am not sliding
backwards, but am making slow gradual progress. I go every Wednesday for
my Alexander Technique(AT) training. I recommend it highly to those who,
like me, are trying to learn to move without spasticity, after being
spastic most of their lives. Every Monday and Friday I go to the health
club, working on the StepMaster and on the Nautilus machinery. Every
Tuesday and Saturday, for a little more than an hour, I do exercises
that I learned at Burke Rehab, modified by AT. Every Thursday and
Sunday, I do AT work for about an hour. I would like to walk every
Tuesday, Thursday, Saturday and Sunday for about forty minutes, but snow
and below freezing weather discourage that.
Hip flexion and ankle flexion have improved noticeably. Glutes and
hamstrings are stronger. The top of the spine is being held in the
proper position. I sit with my feet flat on the floor. The pelvis isn't
held as far back as it was. These and other things keep me encouraged to
continue.
I have read selected portions of Principals of Neural Science by Eric
Kandel, et al, in an effort to find out how the brain learns new
muscular behavior. To sum it up in three words, with minor
oversimplification, they are "practice, practice, practice".
I can't close this journal entry without comment about the annoyance of
getting the right baclofen dosage. It seems that neurologists want you
to be just on the brink of comfort without actually getting you there.
I've been there, but after a period of time the dosage needs to be
adjusted upward, and asking the neurologist to prescribe that, is like a
Jew of ancient times asking Jesus of Nazareth to touch him and heal his
malady.
May 2003
I have continued the rehab regimen that I had given myself. During the
winter months, the cold and dampness gets into the bones, joints and
muscles, which makes the workouts harder and compromises the quality. As
things get warmer and dryer, I believe that I will make more progress.
With regard to the strategy of keeping the baclofen dosage steady and
treating spasms with Valium and urinary urgency with Ditropan XL, it
kind of works. I take Valium very seldom, maybe once a week. I'm taking
5mg of Ditropan per day. It works, but it's not "comfortable".
Last year, my neurologist, Dr. Smith, had casually recommended that I
see a physiatrist who specializes in neuromuscular rehab. During the
winter, I asked for his name and phone and called and made an
appointment. I saw Dr. Ragnarsson in March. I had expected him to make
recommendations with regard to physical activity. His recommendations
were to do a lot of walking, which I do, to lose weight, which I could
have told myself, and to supplement the baclofen with botox injections,
which surprised me. He was about to refer me to a colleague. Because of
transportation issues, I told him to forward his recommendation to Dr.
Smith and we would look for someone closer to home.
Dr. Smith was as surprised as I was. He thought that it made more sense
into increase the baclofen than to get the botox injections. I said that
I wanted to follow Dr. Ragnarsson's recommendation so that I could hear
his next recommendation. There is no one locally that could give me
botox, so Dr. Smith referred me to the same doctor that Dr. Ragnarsson
was going to refer me to, Dr. Simpson.
I made an appointment with Dr. Simpson. I had to make a generalized
appointment with him before he would administer botox. When I went to
the appointment, Dr. Simpson agreed with Dr. Smith, that I should
increase the baclofen rather than get botox. So, I shall contact Dr.
Smith, get my baclofen dosage increased, and then make an appointment
with Dr. Ragnarsson and get his next recommendation.
Note from Bob a couple of weeks later: I made a journal entry earlier
this month. I reported that using Ditropan XL to control urinary urgency
was not comfortable. I also stated that I would be increasing my
baclofen dosage. Two Thursdays ago I did that.
Last Tuesday, I woke up feeling sluggish. As I walked to my car, I
wasn't able to raise my legs to step as much as I had been doing. At
7:55, I told my supervisor that I was not feeling well and might not
make it through the day. At 8:20, I told her that I wasn't well enough
to teach at all and was taken to the health office where I rested until
I felt well enough to drive myself home. I did that but on my way from
my car to my condo unit I urinated in my pants. To move the story along
and leave out unpleasant details, at 5:00 I was in the hospital.
My family practice doctor came to the conclusion that the cumulative
effect of my usage of Ditropan since February and the increase in my
Baclofen dosage had the effect of relaxing bladder muscles to the point
that I couldn't use them to eliminate urine, nor could I use them to
retain urine. I was put on a catheter until the effects of the Ditropan
wore off to the point where I could control my urination to some degree.
I stayed in the hospital until it was demonstrated that I could control
my urination well enough to function in an ordinary manner. I was
discharged on Friday.
It was decided that I would stay off Ditropan and instead take
Hyoscyamine on an "as needed" basis.
One moral of the story is to not hand-wave seemingly minor side effects
of a drug. A second moral is to be careful with different drugs being
used simultaneously. Maybe that is why Dr. Simpson did not want to
augment the Baclofen with Botox injections.
August 2003
My last entry told of my bladder control problem as a consequence of
taking Ditropan and getting an increase in my Baclofen dosage. Since
discharge from the hospital everything had gone smoothly until last
week. More about that later.
I have had no feedback from Dr. Simpson about my blood test (for the
spastin and atlastin mutations) nor about the MRI's. About the former, I
really don't care. About the latter, I'm assuming that no news is good
news.
I had a second appointment with Dr. Ragnarsson. The work I am doing with
Alexander Technique has his blessing. I should continue wearing
ankle-foot orthotics. He had no other recommendations.
Progress is very slow. When this all started, I wasn't aware of how
messed up I really was. Each movement seems to be factored down to
smaller movements and I need to learn each of these.
The school year ended. My wife and I took a vacation trip. When I came
back I resolved to put in extra rehab work. I started doing roughly four
hours per day. I gave myself Saturdays off.
Last Wednesday, there was a crisis. I had nearly finished my work and
took a break, so that my wife and I wouldn't be in each others way. At a
certain level, I started to black-out. I was playing solitaire, so I was
there cognitively. My wife left for work. I tried to resume my
exercises, but I couldn't. I was very weak, and I was spastic. I lied
down on the sofa. I thought that I had had a minor stroke. My brother's
father-in-law and my cousin's husband each had one in the recent past.
After a while I had the urge
to urinate. I got up on my canes to walk to the bathroom. It was
extremely difficult. I couldn't urinate. I went back to the sofa. Now I
thought that maybe the catheter had come out of my spine again. After a
few hours, the urge came again. this time, I crawled to the bathroom. I
was able to get something out. A few hours later, the urge came again. I
crawled to the bathroom. This time I was able to eliminate.
I waited until my wife came
back from work. After spending a total of ten hours on the sofa, I was
able to get up on my canes and walk, with difficulty, to the table.
After tea, a sandwich, and conversation. I got up, ambulated to the
bathroom and brushed my teeth, put on my pajamas and went to bed. I woke
up Thursday morning and I was 90% recovered. Friday morning I was 95%
OK. Now I am feeling fine. Nevertheless, I have an appointment with my
neurologist to talk about what happened.
Now I am limiting myself to three hours of work per day.
November 2003
The blood test that was taken in May indicates that I have a gene
mutation that causes HSP.
The sudden spasticity event that took place in late July, was related to
the urinary crises I had in May. I had a smaller such event in August
and yet a smaller one in October. My neurologist thinks that it's
primarily a urinary problem, so he refered me to a neuro-urologist. He
examined me and said that the urinary problem was just a manifestation
of my upper motor neuron problem and sent a report back to my
neurologist.
I also decided that I wasn't going to return to that eminent physiatrist
in Manhattan. I made an appointment with a less eminent one here in
White Plains, mainly for documentation purposes. (The physical
therapist, who gave a presentation at the SPF conference, made
recommendations, which needed prescriptions.) She agreed with the
physical therapists's recommendations. She examined me. We had a
pleasant conversation and I am very pleased. I'm going to try teaching
on my feet using a Lofstrand crutch, rather than teaching from the
wheelchair. I am also getting a new ankle-foot orthotic, to take
advantage of my increased ankle flexion.
My Alexander Technique lessons continue. Slow, but steady progress. I
now have sufficient flexibility that I can sit on the floor with my legs
crossed, like a boy scout by the campfire. I haven't been able to do
that for at least ten years.
Bye for now. I'll be reporting back again in due course.
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