Spirituality



 
 
 

I was diagnosed with Cerebellar Degeneration (an Ataxia which, in my case, was severe) 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.  More recently, 2010, I was diagnosed with a dystonia (spasticity and out of control contractions) of my jaw muscles.

Because of pain, balance problems, coordination problems and anxiety, I was in very bad shape in 1988. 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.

"Three Simple Questons" - a Book by Charlie HortonAt the current stage in my recovery (approximately 29 years later) I seldom have spastic muscles or pain other than what is caused by the dystonia.  Due to the dystonia, I am having  trouble with my speech and controlling my jaw muscles. I have pain and sores in my mouth from biting my cheeks and tongue, mostly around eating and talking.  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 or even a cane, most of the time. I am still unsteady and move very slowly.  I also use trekking poles when I am hiking over rough terrain, something I just started to do in the last few years. 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 (2017) am retired, have moved to Maryland and enjoy my life.  I get S.S. and retirement income. I have lost weight, watch my diet, still enjoy the occasional cheeseburger and fries, exercise several times a week and enjoy my life. 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, but did not. However, I was thoroughly diagnosed by an international expert on cerebellar problems at John's Hopkins hospital using an extensive history, MRI scan and numerous tests for balance, coordination and reflexes.

As far as the dystonia, I have also made a lot of progress toward physical healing, though that is not  complete.  About five years ago, I was in extreme pain and I had very little control of the muscles in my jaw.  I could not relax my jaw - it was in constant motion.  Today, I have very little pain, only bite myself occasionally and have a relaxed jaw most of the day.

I can't be sure, but considerable evidence suggests that I owe my recoveries to right brain activities such as love, visualization, loving kindness meditation, connections to all things, compassion and forgiveness.  I also minimize the fear based parts of my conscious mind.  These activities contain immense potential for physical healing, particularly when combined with what I call the "transcendental" level of consciousness that can be accessed during meditation.

Cerebellar Degeneration/Ataxia

When I was originally diagnosed with Cerebellar Degeneration I was getting worse fairly rapidly. As I found out through my medical history, I had been slowly getting worse for 20 years.  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, resulting in nerve pain and/or numbness going down both legs. I had a great deal of trouble in my lower back with spasms and nerve pinching. 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 John's Hopkins University Hospital. He was an expert on cerebellar problems and was able to show me the progression 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.

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 occupational counseling, physical therapy and kept journals (dreams, meditations and day-to-day).  I began a process of self exploration, self awareness and change. I also 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 (2017) 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 also do a treadmill (5-20 min.), and stair stepper (5-20 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.

I ask for help and guidance and meditate several times a day. 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.

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 and is 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 or 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.

My current approach to life is described in fair detail in the book I just wrote and published Three Simple Questions: Being in the World, But Not of It.

                                     Dystonia

Initially, I had to rely on some pain medication and muscle relaxants to help me get a handle on the pain and spasticity.  At that time, I also found that during sleep and deep relaxation meditation that my jaw was relaxed.  I took the relaxation during those times to mean that I could relax and control my jaw muscles.  I did not understand it at all and I did not try to, but I came to know how to relax and control my jaw during deep meditation in the transcendental place (see general comments).  I worked on this for several hours each day.  I also pursued physical healing  through visualization and psychic healing.  I did not attempt to analyze or understand any of this.  It was a lot of work, it was working and I knew I was doing it.  At this point, my jaw is relaxed most of the day and I continue to work on it.

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 chronic 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 29 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.

 

Back to Top

 

 

 

~ Return to Home ~ Daily Journal ~ Religion/Belief Systems ~ Holistic Healing ~ Meditation ~ General Comments ~ Contact Information ~

 

Copyright©2004-2016. All Rights Reserved. The content of this holistic health and healing website site is owned by Charlie Horton
who discusses the value of love, spirituality and the potential of mind-body connection and the connection with all things.

 

Holistic Healing Site Designed by "Reliable Web Designs" ~ Spirituality Site Maintained by Charlie Horton