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I was diagnosed with Cerebellar
Degeneration in the winter of 1987-88. Shortly before
that I had been diagnosed with Reflex Sympathetic
Dystrophy (RSD). I have also had long standing
(approximately 4 decades) anxiety problems which became
much more pronounced with the advent of these
neurological problems.
Because of pain, balance problems, coordination problems
and anxiety, I was in very bad shape. At my lowest point
I spent most of my home time in bed or on the couch. My
doctor was trying convince me to start using a wheel
chair, telling me to apply for disability and saying
that I was never going to be working again, though I
still had a job. According to my doctors, I could
anticipate getting worse and never improving. I was 40
years old, scared and bewildered.
At my current stage in my recovery
(approximately 20 years later) I sometimes have minor
bouts (the kind where at least the edge can be taken off
with aspirin) of pain that last for a couple of days. I
go through this two or three times a year, otherwise I
have no pain. I believe that my last panic attack was in
1998. My balance is also much improved, as is my
strength, coordination and endurance. I no longer use
crutches. I do use a cane much of the time.
The first five years of my recovery were thoroughly
documented by the doctors that I was going to and it was
also pretty obvious in my case. I now (2008) work part
time as a mental health therapist and enjoy my life.
I now get S.S. disability which provides the remainder of my income. I
have a sweat lodge on my property which I use twice
weekly. I have lost weight, watch my diet, and exercise.
I also use a lot of visualization, prayer and meditation
(collectively these things are all considered as
mind-body-spirit techniques).
Most doctors would say and have said
that I was miss-diagnosed since I was diagnosed with a
progressive, degenerative brain disease which, according
to them, would never get better and would continue to
get worse. However, I was thoroughly diagnosed by an
international expert on cerebellar problems at Johns
Hopkins hospital using an MRI scan and numerous tests
for balance, coordination and reflexes.
Cerebellar Degeneration
When I was originally diagnosed with
Cerebellar Degeneration I was getting worse fairly
rapidly. At that particular point I was using crutches
and I was having difficulty just moving forward or the
simple act of getting in a chair or on a couch. Standing
up was impossible without crutches and my right leg was
extremely painful, mostly my knee. The muscles
themselves felt like they were fighting each other and
they were actually doing something like that
(antagonistic muscles contracting simultaneously). I had
fairly consistent cramps and spasms in the muscles of my
lower back and right leg. I also had a pinched sciatic
nerve in my lower back with nerve pain going down both
legs. I had a great deal of trouble in my lower back. My
balance and coordination were also pretty bad. I could
not stand up to take a shower, so I would take a shower
by leaning up against the wall and just having the water
come down on me, but I could still take a shower. My
physician was urging me to use a wheelchair and his
assumption was that I would not be able to work in the
future. He was also trying to sign me up for social
security disability. I did not want to go into a
wheelchair. I also did not want to take disability
because it would mean that I would have to not work
again and I thought that I would be able to. I was
stubborn, oppositional and not very accepting of my
limitations! My physical
symptoms were probably different from yours. If you have
cerebellar degeneration there is also probably some
similarity. The symptoms are not as important as the
fact that I have been able to improve in spite of the
diagnosis and the fact that I had been degenerating for
some time! I had been
finally diagnosed by a doctor at Johns Hopkins
University Hospital. He was an expert on cerebellar
problems and was able to show me the procession of my
disease. I started out with good coordination and
balance. This lasted all the way through high school.
After high school I could see that I had been losing
balance and coordination and that I was becoming slower.
I could see that there had been about twenty years of a
slow, almost unnoticeable, progression of worsening
balance, coordination and muscle use. The progression of
my disease during the last six months had been rapid.
There were even some words I could no longer pronounce.
Because there was no medical solution
available, I started to learn about attitudinal healing,
the significance of unconditional love, and
visualization. The progression of my disability stopped
when I started my visualization. During the next several
months, it started to reverse. Recovery was slow and
very difficult, but I was getting better. It dawned on
me that I had spent most of my life being self
destructive, I had a poor idea of myself, a lot of self
hatred and that I did not know much about love, let
alone unconditional love. I knew I had to change all
that if I wanted to get better.
I began attending Attitudinal Healing
meetings, and using visual imagery (I visualized
walking, having smooth muscle action and I developed
what I call a health meditation (see the meditation
section of this web site). I lost weight (25 lbs) and
started exercising. Initially my exercises consisted of
some modified T’ai Chi in my bed and 0.3 miles on an
exercise bike. I went to counseling and kept journals
(dreams, meditations and day-to-day) and began a process
of self exploration, self awareness and change. I began
using biofeedback for relaxation and pain reduction. I
was in constant pain and continued to need crutches for
approximately four years. My learning was most intense
during that period, though it continues today. After 4
years I began struggling to use a cane. My pain level
was down fairly low, around a four. To me, that was no
longer serious pain. Today
(2008) I
do a combination of calisthenics (push ups, sit ups and
leg lifts) and weights (those T’ai Chi exercises,
standing, eyes closed, with weights, to promote strength
and balance). I do an exercise bike (10 min.), a
treadmill (10 min.), and stair stepper (7 min.). While I
am exercising I focus on healing, love, acceptance and
keep assuring myself how good the exercise is for me.
Sometimes in the morning and frequently during the day,
I will work out with a handheld biofeedback relaxation
device which teaches my body how to relax and heal.
While doing the relaxation, I am in a suggestive state
and I use healing meditations or imagery to focus on
balance and coordination. When possible (like during
vacations), I do these things or a variation every day.
At other times, I do them a minimum of three times a
week. As far as the
exercises and the buildup of endurance, I do not believe
in the phrase "no pain no gain". If I have any pain
other than discomfort from increased movement, or
any spasticity, or anything like that, I simply stop
doing the exercise. When I began exercising, I just was
doing 0.3 miles on the exercise bike with no pressure. I
now do quite a bit more, but I worked up to it slowly
and gently. If I have pain or setbacks I start again at
a low enough level to not have pain and do it several
times a day. I just work on doing the exercises and I
use the imagery, of smooth muscle functioning, smooth
activity and healing; so I do a lot of imagery work.
I participate in a sweat lodge twice
a week. I ask for help and guidance and meditate several times a
day and take hot baths every week or so. All of these
help me to get in touch with my higher self or the
Higher Power in the universe (God) and it helps me to
continue to clean out any negative feelings, fears,
angers, judgments, or attachments. It is important to me
that I get in touch with and overcome those things
because they block my healing process and my ability to
connect with God, the universe, and with other people.
When I started this process I was
very isolated, self destructive, had trouble with the
concept of God and certainly did not see the universe as
a benevolent, loving place. I had already started
recovering from alcoholism and begun to work on these
problems when I became disabled. My disability
definitely accelerated the process!
I still have to watch out for
isolating myself. If I have anything that is bothering
me, I need to expose it to the open air rather than hold
it inside. That usually involves talking about it with a
trusted individual and trying to overcome it. At times I
had to use a formal schedule of talking to people and
force myself to follow through, though now it comes
naturally. The transition took years and I ended up
putting my trust in the wrong people several times. Like
recovery from my physical problems, I had many setbacks.
But I knew it was really important for my spiritual
connection, so I continued.
I also had to overcome my self-destructive tendencies.
As I indicated I was an alcoholic and drug addict. I
stopped drinking about two and ˝ years before I became
disabled. I needed to move from a self destructive
lifestyle to a healthy lifestyle and that was very
difficult for me. I took one (usually small!) step at a
time. For example, I gave up processed sugar, butter and
soda. As a result I have lost a great deal of weight. I
eat carefully. Food was a hard one for me. I learned to take
care of myself in other ways as well. For instance, I
avoid people who are critical or judgmental of me. I
avoid making my money in ways that I do not like, and I
avoid doing anything that goes against my
emotional/spiritual program.. I have spent a great deal
of time facing up to my own fears and judgments and in
deciding what is best for me. That is not always what is
easiest, in fact it is particularly not what is easiest.
It is frequently difficult, but it is also something
that I know is right and healing. Good examples are
losing the weight, quitting coffee, and quitting
smoking, all which I have done.
Chronic Pain
I was taught to rank my pain on a
scale from zero to ten. Zero being no pain and ten being
pain so intense that I would kill myself if I had to
endure it for more than two hours. By definition I never
had ten level pain, but nine level pain was pain high
enough that it caused my breathing to get rapid, my
heart rate to go very high, sweating and I basically
could think about nothing else but the pain. Anything
below seven, six or below, was something that I
considered to be walking around pain, meaning I was able
to go to work, not function normally at all, but at
least I could do it. When I went to work, for example, I
remember that I would make plans in order to go twenty
feet to the drinking fountain or go to the bathroom and
I was using crutches and the idea of going to a recovery
meeting or something like that was out of the question
even with six level pain. When it got below that, lets
say to a four level pain, I did go to meetings and move
around some. Through my own
pain and working with others who suffer from chronic
pain, I have come to know what I call the chronic pain
cycle. This begins with pain and taking medication for
the pain, particularly narcotic or similar medication.
With chronic pain, over time, the medication becomes
less effective and the pain gets worse. This leads to
use of more and stronger medication, more pain results
and the cycle continues. As far as I can tell this
pattern can be a physical reality, with psychological
overtones. The presence of trauma and/or pain seems to
reinforce the “pain” nervous pathways which leads to
more sensitivity and an increased awareness of pain.
This is why the pain feels worse with no additional
trauma. Medication tends to work on the perception
(brain) end of pain rather than the periphery (the pain
pathways), so it does not address this issue.
I have avoided the chronic pain
cycle, primarily because I have not used any medication
to speak of. Initially when I did use some pain
medication I realized that I would become addicted very
rapidly. So I used a combination of biofeedback
relaxation combined with various forms of visual
imagery. I use a handheld biofeedback device that
registers galvanic skin response. I use it to relax,
knowing that if I relaxed I would have less of a
stressful reaction to the pain, it would promote
healing, and I would experience less pain. I have done
the relaxation most days for the last 17 years. Some
days, for example when experiencing significant pain, I
use the device several times a day.
This method is certainly slower and
more arduous than taking a pill, but it also has a more
long lasting, beneficial and empowering effect.
Anxiety
I had an “acute anxiety attack” when
in my early twenties. I don’t remember all the details,
but believe it was my first panic attack. A panic attack
is defined by accelerated and shallow breathing,
markedly increased heart rate, profuse sweating, nausea
and racing thoughts, usually about dying. I started
having frequent panic attacks shortly after becoming
disabled. I would sometimes have more than one a day, or
I might go several weeks without one. Even when not
having attacks I had a high level of anxiety much of the
time. The way I have dealt
with anxiety is a mixture of conventional and
unconventional methods. I have not used any medication
since any tranquilizing medications I encountered were
also addictive. My main tools have been using a hand
held biofeedback device and meditation. The biofeedback
device helps me relax by registering the galvanic skin
response with an audible signal. I use it to train my
body to relax especially in potentially stressful
situations. The most
powerful meditations I have used are found in the
meditation section of this web site. I often use them in
combination with biofeedback. One meditation is my form
of progressive relaxation. The other is based on the
feeling of unconditional love. The latter is the more
effective of the two, but also requires some sort of
connection with that feeling, of unconditional love. Any
amount of connection with that feeling is very powerful.
That feeling is the opposite of anxiety and if it is
possible for me or anyone to have that feeling, the
possibility of a panic attack is over, for that time.
Let me illustrate this point with a
personal experience. It was
during a vision quest, which meant four days and three
nights with limited water and no food in a remote
location, alone, without a tent or many supplies. A
vision quest is a period of prayer and meditation and
can be an opportunity to make a very strong spiritual
connection with limited distractions. This quest was
dedicated to finding out about my own fear. During the
first three days I was out there I had already witnessed
how my mind could switch back and forth between being in
awe and being terrified by the very things that had
previously inspired the awe. I had the opportunity to
observe that switch several times in the last few days!
It being the evening of the third day, I was weak and
feeling vulnerable. I got up
to move around, which caused me to notice just how weak
I was. I became scared and began having that “electrical
storm” in my brain (confused, confusing and racing
thoughts). That “storm” quickly became a panic attack. I
became totally convinced that when my mentor came to get
me the next day, I would be dead. After several
agonizing minutes, I began to sing “Amazing Grace”,
recited the poem “Desiderata” by Max Ehrmann and recited
the twelve principles of attitudinal healing. In doing
those things, I made a connection with the power/feeling
of love, and relaxed. I stopped sweating, my heart rate
returned to normal and I was fine the next day when
picked up.
Reflex Sympathetic Dystrophy
Reflex Sympathetic Dystrophy (RSD) is
caused by a dysfunction in the sympathetic nervous
system. My understanding is that it begins with some
sort of an acute problem or trauma that has occurred
usually in a limb. This is sensed by the central nervous
system and results in reduced circulation to that area.
Normally this is a very functional response, allowing
for healing without excessive blood loss. In the case of RSD, however, that healing is prevented or slowed by
decreased circulation and the pain increases. When the
pain increases the circulation reduces still more.
What I did to counter that was
actually suggested by the doctor who diagnosed me with
RSD. We decided to try subjecting my leg to alternating
extremes of hot and cold. I did this by wrapping most of
my leg in cold packs, then covering it all with a towel.
I would keep the whole assembly there for about ten
minutes and then switch it with hot pads (as hot as I
could stand) for another ten minutes. I repeated this
one more time so that the whole process would take about
40 minutes. I did this at least twice a day.
Additionally, I added to it some visualization. In that
visualization I envisioned and felt the circulation
increase in my lower leg. I also visualized and felt the
tissues getting everything they needed and healing
taking place. So I combined a physical technique with a
mind body technique and it worked very well. Each of the
techniques was oriented at increasing and restoring the
blood flow, and healing the traumatized tissue. These
techniques were more effective when I was successful at
focusing and concentrating, so I also had to release my
focus on the outcome (less pain) and simply know that
the process was good for me (which I could feel!).
It was extremely painful and
unpleasant and I had to do it for a long time, several
months, before I noticed any sort of a change, but I
started to notice that the pain was reduced. Gradually,
the pain went away and my knee healed, and I have not
had any symptoms of reflex sympathetic dystrophy for
several years. I emphasize that it took me a long time.
I did not use any medication and it was unpleasant to do
but there was no other way to do it. |