BACKGROUND: More than 120 years of symptomatic treatment has produced little more then frustration and despair for patient and physician alike. Most likely there will not be a single drug or therapy which will overcome ALS.
REVIEW SUMMARY: This recent and on-going study, involving Supplementary Therapeutic Measures in ALS, has produced relevant strategies which have impacted ALS patients significantly, by (1) producing improved quality of life, (2) stabilization and reversal of symptoms, (3) as well as extended life survival. The Combination of Supplementary Therapeutic Measures include: Deprogramming the negative emotional mind-set that occurs when one receives a terminal diagnosis, and replacing the debilitating negative effect with a positive self-empowering thought process -Meditation - Visualization - Guided imagery - Improved family environment - Biofeedback - Spirituality - Massage - Healthy nutrition - Antioxidants. Additionally, a large segment of the ALS population, involved in this study, has used an Electrical application, the The Baar* Battery.
CONCLUSION: In the opinion of the author the different manifestations of Clinical ALS are represented by various related neuromuscular degenerate occurrences, as evidenced by persisting, isolated upper without lower motor neuron signs, and lower without upper motor neuron signs.
As well as the extreme variation of progression of the disease regarding individual patients. Therefore a Combination of drug therapies, (utilizing state of the art delivery systems), used in conjunction with a combination of the aforementioned Supplementary Therapeutic Measures will produce a more appropriate, and effective treatment for ALS.
PURPOSE: To raise the awareness of the ALS community, as well as that of the Medical community, as to the beneficial advantage of incorporating these Supplementary Therapeutic Measures into an over-all approach in the pursuit of a more effective treatment of ALS than currently exists.
Note number one:
Before proceeding with this report, I believe it is paramount to speak to the issue that is raised by many physicians regarding a mistaken diagnosis when a ALS patient does not follow what is considered the "Clinical Course" of ALS.
We now know, from Specialists in neurology and pathology, (Reference #1, #2, #3, #4, #6, #7, #8, #18, #20) that the assumption of mistaken diagnosis, based on a non-clinical course of ALS, is medically inappropriate. Neurologists at The Mayo Clinic, Rochester, Minnesota have diagnosed and or confirmed diagnosis of thousands of patients with ALS. The Mayo Clinic also performed the most thorough and extensive investigation, extending more than 14 years in duration, on the island of Guam where ALS is 100 times as common as in the United States.
The Mayo Clinic, #1 reported that their prospective study, as well as those conducted elsewhere, and the reports from Guam, suggests strongly that 20% of patients who lived longer than five years have NOT been mistakenly diagnosed. It is apparent that other factors, such as the patients will to live and the support of family, play significant roles in extending life." #1 Research strongly suggests that the patients with long duration illness have the same disease as those with short duration illness. #1 Also the Mayo Clinic investigators were impressed, that at autopsy the long duration patient's neuropathologic findings were much the same as those found in patients who had died earlier in the course of their illness. #1-#6.
It was the Mayo clinic's experience that the 20% of patients who had a more benign "course" of ALS could be differentiated readily from patients who demonstrated a number of etiologies for muscular atrophy that superficially resembled motor neuron disease.
During a physical examination of 100 consecutive patients at the Mayo Clinic it was found five years from onset of illness that fully 20% of the patients were still living. 10 years from onset almost 10% were living, and two patients lived for 18 years. #1 Mackay, #8 reported in his series of 70 patients with ALS, a duration of life from 3 months to 21 years.
Norris, #20 particularly has commented on the unusual longevity of many of his patients. McKhann and Johnson, #7 have suggested that about 20 to 25% of all patients with ALS may have relatively benign "outcome".
The conclusion of the Department of Neurology at the Mayo Clinic was, it is inappropriate to change a diagnosis of ALS to that of a mistaken diagnosis based upon duration of life or even improvement in symptoms. #1 Several patients who the Mayo Clinic diagnosed as having ALS subsequently recovered. #l Others have also reported similar patients who have recovered. #1, #2, #5, #6, #18 A number of ALS patients who were reported to have recovered have been documented in detailed clinical studies. #1,#2,#3,#4,#6,#18 "The possibility of spontaneous remission in ALS should always be considered," #2.
Note number two:
An excerpt from an editorial appearing in the British medical journal, The Lancet, reported, "Although there is still some uncertainty about the magnitude of the increase, there can be little doubt that motor neuron disease (ALS) has become more common in the countries of the Western World."
In the opinion of this author, the number of estimated cases of ALS in the USA is grossly underestimated.
This paper is supported by general research, observations and reports made by patients, family members and therapists, as well as field observation involving the use of Supplementary Therapeutic Measures In ALS.
The three study groups consisted of individuals who received a diagnosis of ALS, who sought and received a second medical opinion from a neurologist, or hospital-clinic, specializing in the treatment of degenerative neuromuscular diseases, and were confirmed with a diagnosis of ALS.
GROUP NUMBER ONE consisted of 14 ALS patients who received individual education and training either in Salisbury, NC, or at their homes in other States. These education and training sessions consisted of three and one-half to four days and evenings. Family members, care givers, and therapists were included in the sessions, and were developed into a support team for the patient.
A rough draft of a typical training session:
Training sessions started with a deprogramming process for the patient and the support team. Deprogramming was necessary due to the SEVERE NEGATIVE effect on the individual who has received a terminal diagnosis, the manner in which the diagnosis and prognosis were presented, and the published material regarding ALS that is generally available for the patient and family members to read. To quote Dr. Maureen Holasek, Radiation Oncologist; "When a physician gives a patient a time diagnosis, often times the patient will program their mind and body to expire at that time. Imagery and improved mental well being may help from the standpoint of improved immunity which is needed to help fight the disease."
Replace the "Negative effect" with a positive approach to the disease. Thus reducing anxiety and stress to a more manageable level, and creating a positive impact in terms of relaxation and improved sleep. This learning also changes ones relationship with death, whenever it may come, lessening fear and pain, making available more energy for healing and living life more fully today and each day to come. Every patient is looking for a "Cure" and they would like it to come in the form of a "Magic pill" or miraculous healing. Discourage the use of the word cure. Replace it with the possibility of "Buying time". Give hope to the patient and the support team. Hope can never be false if it replaces no hope. No hope creates despair and the spirit, mind, and body, of the patient, can shut-down at just the time they are needed the most. Hope can produce "Good body chemistry". - Speaking of hope, Forbs Norris, MD Director, ALS Research California Pacific Medical Center, said, "Surely nourishment of this vital function contributes to patient care in such an illness as ALS." (Doctor Forbs Norris recently passed away, and the center was renamed Forbs Norris MDA/ALS Research Center)
A quote from Andrew Eisen, MD, FRCP(C), The Neuromuscular Disease Unit, The Vancouver General Hospital, Vancouver, BC, Canada. "There is good evidence that simply having a positive attitude about the disease extends life significantly more than any presently available medications."
It is imperative to teach the patient, and support team, to FOCUS on living NOW, rather than focusing there energy on the fear of dying.
Develop a plan of action, giving the patient a position as team leader.
The patient will develop a feeling of authority and control over the decision making process regarding his or her life. Include a realistic set of goals, both short term and long term.
Educate the patient and support team as to the Supplementary "Wellness tools" that are available . Then teach the patient and support team how to effectively integrate and utilize the methods that are available and incorporate them into their plan of action.
Test the patient and team members to determine how well they understand and are implementing the plan of action. Be aware of any team member who may be too aggressive, and make that person understand that the patient must be the team leader. The importance of the patient maintaining self esteem and a reasonable degree of control over their life is paramount to success.
Help the patient and team members evaluate, and when necessary adjust, goals and expectations regarding their particular plan of action.
Put in place a set of balance and checks, including a follow-up procedure to reinforce the "one on one" education and training received in the field.
GROUP NUMBER TWO consisted of 67 ALS patients who requested information. 40 of whom chose to receive their education and training by means of correspondence, telephone (and when applicable computer. 27 of the 67 patients did not initiate any further contact.
GROUP NUMBER THREE consisted of several hundred ALS patients who had been studied in previous research and reported on by medical professionals and organizations. I was able to identify, among many of the patients in group three, the use of Mind/Body Modalities, as well as Spirituality.
MEDITATION, VISUALIZATION, GUIDED IMAGERY, SPIRITUALITY, AND IMPROVED FAMILY ENVIRONMENT have all been used over the years by progressive physicians regarding every illness known to mankind In recent years they have become an integral part of effective wellness programs, as evidenced by the number of hospitals throughout The United States that have instituted Mind/Body units within the hospital environment.
HEALING IS BELIEVING: For more than 25 years laboratories at Harvard Medical School have systematically studied the benefits of Mind/Body interaction. The following are excerpts from an interview conducted May 22, 1996 with Herbert Benson, MD, associate professor of medicine at Harvard Medical School, medical practice at Deaconess Hospital in Boston:
"You can have a powerful influence over your health if you learn how to purposefully relax your mind and body, and to use your own personal beliefs - whatever they may be - to help reduce unpleasant symptoms and enjoy good health. We all have patterns in our brain of the memory of what it is like to be well. We're wired for these memories. We can use our beliefs to call on the memory of wellness and bring the state forth. Our thoughts and feelings and beliefs are actually patterns of brain cells, a physical phenomenon. It's possible to use brain cell patterns to promote health. This is a scientifically proven tool, shown in more than 200 studies to be effective. The scientific evidence is here."
BIOFEEDBACK has been used to train the mind to control specific physical functions, producing some amazing positive results.
MASSAGE was, for many years, considered a valid medical treatment, but because of the technological revolution in medicine it was discarded for a number of years. Fortunately, massage has once again become an important factor in good medical treatment. A recent study at the University of Miami School of Medicine supports therapeutic use of massage. The children receiving massage were found to have lower levels of stress hormone cortisol in their saliva.
HEALTHY NUTRITION is recognized as one of the key factors regarding good health today. The medical community now has identified the correlation between poor nutrition and illness.
ANTIOXIDANTS can be used in the capacity as a neuroprotective procedure. Evidence has implicated free radicals in the pathogenesis of neurodegenerative diseases. #9, #10, #ll, #12, #15, #16, #17, #19.
Note number three:
A unique audio tape process known as Hemi-Sync(R) has proven to be extremely valuable, regarding the teaching of meditation, visualization and developing a "Healing guided imagery" which is individualized for each patient. Hemi-Sync(R) has also proven very effective in teaching patients and team members to relax and to be more focused. The following is a brief statement regarding Hemi-Sync. (R) These specially engineered audio tapes have been used successful during extensive surgical procedures performed in hospitals from the East coast to he West coast, as well as in stroke recovery of both motor and speech functions. Hemi-Sync tapes are used by hundreds of physicians and health care professionals throughout North America, South America and Europe. The tapes represent "State of the art" audio technology that encourages the two hemispheres of ones brain to act in unison. Hemispheric Synchronization (Hemi-Sync) is verified by the use of a NRS-24 Neuro-mapper, which takes the output of a 20 channel EEG and converts it into a color contour map of the electrical brain activity using noninvasive electrodes attached to the scalp. Through computerization of such signals the researcher can "See" variations in frequency, amplitude, phasing, coherence, wave shapes, and relationship between areas of the brains neocortex. The results can be stored and analyzed, or printed in the form of a color contour map.
Possible Mechanisms Underlying Brain-wave Training:
Different neurotransmitters are triggered by different frequencies and wave forms. The implication is that the brain's neurochemistry, and thereby its functioning, can be altered with modifications of brain-wave frequency. There is also speculation that the neurochemical response to trauma may become entrained as a permanent state and that brain-wave training may allow a return to the pre-trauma neurochemical state. #l3.
Note number four:
The electrical application that was used by a segment of the ALS population was The Baar Wet Cell Battery, which supplies a low electrical current that supplements the body's own electrical energy. This type of electrical current is considered to be related to bioelectric regenerative energies. #14 This current is in the low millivolt range and is generated as a liquid battery. This battery system has two electrodes that attach to specific areas of the body and are attached for 30 minutes per day. Reports, supplied by the ALS patients who used this system indicated some very positive effects, and in several cases the results where extremely dramatic.
The Battery unit is manufactured by Baar Products, Inc. Additional information about the unit, including case studies involving ALS, MS, and other patients, is available upon request. Contact Mr. Baar, 1-800-269-2502 or 610-873-4591 outside USA, or e-mail at email@example.com.
Because of the newspaper and magazine articles that have been written about my experience with ALS, I am often asked if I know of other ALS patients who have been cured or who live a long time after on-set or diagnosis of the illness?
First let me state, "I have not been cured of ALS. However, I have been able, using the Supplementary Measures discussed in this paper, to reverse major symptoms that were interfering with my living a reasonably normal life."
I am aware of other ALS patients who have been able to reverse many of their major symptoms, also I am aware of a number of ALS patients who have been able to live far beyond a "Three to Five Year Period". The following information was gathered using extremely limited resources over a period of three months. I believe the ALS patients who are listed here represent but a small fraction of the "exceptions to the rule". With proper resources and time I am sure a much larger number of "exceptions" can be identified.
The purpose for identifying these ALS patients, who are "exception" is to help counter-balance the information that most newly diagnosed patients and their families receive. Also this information is to serve those patients who have been diagnosed previously and been drained of all hope. Just making this information available can serve as a catalyst that could enable a segment of the existing ALS population to improve their quality of life as well as extending life survival!
There are more than 3000 ALS patients living today, in The United States, who are "exceptions".
The following list was developed over a three month period. The list names ALS patients, and the number of years they survived beyond diagnosis. (Not included in the groups previously mentioned )
+ represents people living today
Meridith, Stock, CA. 25+ years
Vikki Ray, McCloud, CA. 16+ years
Bob Swann, Albermarl, NC. 13+ years
Joel Reedy, Tampa, FL. 16+ years
Joe Tangaro, St. Louis, Mo. 13+ years
Jim Bell, e-mail firstname.lastname@example.org. 12+ years
Vincent Gagliardo, St. Petersburg FL. 16+ years
Jim Driever, Pocatello, ID. 12+ years
Merle Grisso, Memphis, TN. 25+ years
Stephen Hawkins, London, England 36+ years
Sheila. Leftley, Northhampton, UK. 10 years
Jean Forseth, Denver CO. 23 years
Clarence Wraight broke the previous ALS survival record of 22
years at Baptist Hospital, Winston-Salem N.C.
Clarence Wraight, Spencer, NC. 28 years
Anthony Mastrantonio, San Francico CA. 17 years
Kathryn Leonard, Centre, AL. 21 years
Thomas Bushey, Sea Grit, NJ. 11 years
Elizabeth Tompkins, Indiana, PA. 27 years
Tom Shorrock, Lake Placid, FA. 10 years
Hellen Curtis, Bakersfield, CA. 10 years
Angela Riggs, Wilsonville, OR. 10 years
Myra Rosenfeld, Toronto, Canada 11 years
Henry Timms, Tavares, FL. 10 years
Jan Hoowij, Encino, CA. 12 years
Margaret Kelly, Pawtucket, RI. 13 years
Ada Munn Beall, Norfolk, VA. 22 years
Bill Pirnie, Fairway, KS. 11 years
Owen Johnson, Kansas City, MO. 11 years
John Bowdish, Wichita, KS. 23 years
Kay Sanders, Saugus, MA. 11 years
Keith Worthington, Kansas City, KA 12 years
Bob Vessell Hannibal MO. 12 years
Norm Johnson, Grand Rapids, MI. 10 years
William Villicana, Joliet, IL. 14 years
Lou Hamilton, Pleasant Hill, MO. 11 years
Carol Pasinski, Glassport, PA. 11 years
Richard Cogan, Hagerstown, Md. 14 years
Lance Meagher,MD Connon Beach, OR. 12 years
Ten ALS patients, in the Mayo Clinic Study, lived 10 years, and two ALS patients in the study lived 18 years. #1
The following are ALS patients who have gone into remission, and/or reversed major symptoms. I have verified their diagnosis.
Evy McDonald - Tucson, AZ.
William O'Donald - Eureka, CA.
David Atkinson - Salisbury, NC.
Dennis - NC. (Does not want information made public.)
C.W. (Bill) Sorrell - St. Louis, MO.
ALS patient described in reference #2
ALS patients described by Mayo Clinic reference #1
Arthur Kayl - PA.
Jerry Willingham - Boise, ID.
Mitch Hayes - Albuquerque, NM.
There are other ALS patients I have information about who could be added to the above list, but I do not have their medical information.
Combining the aforementioned Supplementary Therapeutic Measures along with what ever traditional treatment that may be available can make a significant difference to many people who are diagnosed with ALS.
Certainly we must be realistic and recognize that many ALS patients will not benefit from this "Combination". But who are we to say which ones will, and which ones will not! There is no procedure nor mechanism in place, at this time, to know who may benefit, therefore offer the choice to all ALS patients who would be willing to try. What is being suggested here is certainly non-invasive, and poses no harmful dangers as compared to many procedures that ALS patients are already trying on their own.
I find it very interesting, and extremely disconcerting, that the medical community mental health experts have identified, and justly so, the need for counseling and grief or trauma therapy for students when one of their classmates dies, as well as similar therapy for colleagues of a business worker or a post office tragedy involving a fellow worker, "But" what sort of grief or trauma therapy is available for the ALS patient and their family when they first receive the diagnosis?
Certainly receiving a terminal diagnosis and a prognosis that is tantamount to a hideous death sentence qualifies as a trauma situation!
A better way of presenting a ALS diagnosis would be to temper the general statistical information about the disease with information contained in this report. Doctors and patients alike should be aware of the possibility that any ALS patient is a possible "Exception"!
Dr. Fred Plum, Director of Neurology at Cornell Medical Center has been quoted as saying, "Sometimes I wonder whether enthusiasm and joy in the world, and interest and just plain determination doesn't form connections between nerve cells faster than nature takes them away. The quality of hope, of drive, walking ten steps as if you are running a hundred yard dash have something to do with not only the quality of life, but I am really confident with the length of life, and the recovery from sever illness. One can will oneself to die, one can certainly will oneself to be better."
We must continue to step-up the research efforts involving ALS, and maybe medical science is getting close to a "Truly" major breakthrough, but please don't write off and/or ignore the needs of those patients who already carry the "Diagnosis".
There is much that can be done to help those patients, and that is what this paper and the incorporation of these Complimentary Therapeutic Methods is all about, helping ALS patients and their families.
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#3 - Tucker et al. Neurology 1991;41:1541-1544
#4 - Tucker t, Lazer RB (abstract)Neurology 1985;35(suppl)108
#5 - The Neurologist 1996;2:85-95
#6 - Lambert, EH. Electromyography in ALS. in motor neuron diseases. Vol2. Edited by FH Noris Jr., LT Kurland. New York. Grune and Stratain,1969:135-153.
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#8 - McKay RP; Course and prognosis in ALS Neurol 1963; 8:117-127.
#9 - Duvai C, Poelman MC. Scavenger effect of vitamin E and derivatives of free radicals generated by photoirradiated pheomelamin. J Pharm Sci. 1995;84:107-10.
#10- Sohal RS, Kua HH, Agarwai S, Foster MJ, Lal H. Oxidative damage, mitochondrial oxidant generation and antioxidant defenses during aging and response to food restriction in the mouse. Mech Aging Dec 1994;74:121-33
#11- Bowling AC, Schuize JB, Brown RH Jr, Beal MF. Superoide dismutase activity, oxidative damage, and mitochondrial energy metabolism in familial and sporadic ALS. J Neurochem 1993; 61:2322-5
#12- Robberecht W, Sapp P, Kristina M, Rosen D, McKennayasec D, Haines J, et al. Cu/zn superoxide dismutase activity in familia and sporadic ALS J Neurochem 1994;62:384-7
#13- HEMI-SYNC(R) J vol.xiv,1996 No, 3ii An Empirical Investigation into the Effect of Beta Frequency Binaural Beat Audio Signals On Four Measures of Human Memory. Richard Cauley Kennerly, MA
#14- Becker, RO, The Body Electric 1985:72-73
#15- Olanow CW, Arendash GW, Curr Opin Neurol 1994;7:548-58
#16- Cohen G, Werner P, Calne DB, editor, Neurodegenerative disease. Philadelphia; 1994 Saunders WB: 139-61
#17- Sardesai VM, Nutr Clin Prac 1995;10:19-25
#18- Arch Neurol 1989;46:330
#19- Sardesai VM, Role of antioxidants in health maintenance. Nutr Clin Prat 1995;10:19-25
#20- Norris FH Jr, Prognosis in ALS Trans Am Neurol Assoc. 1971; 96:290-291
Author, David R. Atkinson, Sr.
Writer, Educator, Lecturer, ALS patient.
ALS/MOTOR NEURON DISEASE A VERY IMPORTANT DISCOVERY! by David Atkinson
David's Book: HOPE SPRINGS ETERNAL, SURVIVING A CHRONIC ILLNESS by David Atkinson
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