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File: ALStherapy.doc 1 July 06 DEJ
About this File
This file is a work in progress, maintained as a .doc file in booklet format, which I post periodically to the www.alstherapy.info website. Some portions have not been written yet, and others will probably be subjected to major rewrite.
If you would like to be e-mailed a copy of the current edition of the .doc file, please contact me at scandalousdave@gmail.com and put “request for ALS therapy .doc file” in the subject line so I won’t delete it as spam. Or, you can snailmail me for a free paper copy at: Dave Johnson,
NOTE: You’re probably used to medical literature being disconnected from the reality of being a patient, and you’re probably used to alternative health literature promising you the fountain of youth if you will just take the right pill. This document is different. It is for people who have been abandoned for dead like the robbery victim in the story of the “Good Samaritan”, who aren’t ready to give up quite yet even with that heretic Samaritan approaching, and who don’t demand of the Universe that it provide instant or easy gratification.
Keywords: ALS; A.L.S.; Lou Gehrig’s Disease; amyotrophic lateral sclerosis; motor neuron disease; chemotherapy; physical therapy; massage therapy; natural healing; prayer; glutamate; El Paso; Los Banos; Stephen Hawking; John McKissick; Tuesdays with Morrie; “the lame shall leap like a stag”;
Overview
This website is about healing ALS (“Lou Gehrig’s Disease”, also known as “motor neuron disease”), based on my own personal experience. Issues such as diagnosis, coping with disability, preparing for death, and clinical trials aren’t discussed much. The resources section in Part IV points to better sources of such information.
Every patient’s personal situation is different. It is up to you and your doctor and/or other personal advisors to decide how much (if any) of the information you find here is applicable to your case.
Although this site is about ALS, there’s information here that may be useful to patients with other diseases that medical doctors seem unable to treat, especially neurological diseases.
Table of Contents / sitemap
HOME PAGE
http://scandalousdave.googlepages.com/home
About this file
Overview
Table of Contents / sitemap
ALS (“Lou Gehrig’s Disease”) Introduction
F.D.A. Notice
PART I CASE HISTORY
http://scandalousdave.googlepages.com/alspart1
[Note: I intend eventually to put internal hyperlinks in this page.]
Introduction
Pre-Nov 04 ff (“ff” means “and what follows”)
Nov 04 ff
6 May 05 ff
1 Aug 05 ff
7 Oct 05 ff
Early Jan 06 ff
29 March 06 ff
14 April 06 ff
[late June 06] What’s Next?
PART II ALS & ALS THERAPY
http://scandalousdave.googlepages.com/alspart2
[Note: I intend eventually to put internal hyperlinks in this page.]
My understanding of ALS
My perspective on ALS chemotherapy
My perspective on physical therapy
PART III MY CHEMOTHERAPEUTIC REGIME
http://scandalousdave.googlepages.com/alspart3
[Note: I intend eventually to break this up with hyperlinks.]
My chemotherapeutic regime and its rationales (long page!)
PART IV BROADER HEALING ISSUES
http://scandalousdave.googlepages.com/alspart4
[Note: I intend eventually to put internal hyperlinks in this page.]
My perspective on broader healing issues as they relate to ALS
Prayer (long essay!)
Herbal and nutritional therapy: patients vs. doctors
Understanding nonprofit foundations
Bringing it over the bridge (importing medicines esp. in
Don’t own the disease
How to buy nutritional supplements & herbs etc.
Resources
Diagnosis
Printing instructions for MS Word .doc electronic format (Ignore this if viewing on the Web.)
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Amyotrophic Lateral Sclerosis (“Lou Gehrig’s Disease”), also called “motor neuron disease”, is a progressive paralysis which eventually leaves a person completely immobilized, unable to breathe, swallow, or talk, unable to survive without intensive life support measures. The paralyzed muscles atrophy. Sensory nerves are usually unaffected. Generally there is no mental deterioration other than what naturally results from the physical stress of paralysis. Life expectancy from the initial manifestation of symptoms is about 3 years, but some people go a lot faster, whereas perhaps 10% are still alive after 5 years. Death is most often the result of respiratory failure. About 10% of ALS cases are caused by a known genetic defect that runs in families. In most other cases the cause is unknown: such cases are called “sporadic ALS”.
Mainstream medicine offers no effective therapy for ALS. Therefore patient care revolves around issues such as how to deal with a progressively worsening handicap and how to cope with the patient’s impending demise. Effective therapy isn’t discussed, other than in the context of “we hope someday the big pharmaceutical companies will develop a drug cocktail which will slow down the progress of the disease”-- the nearly worthless Riluzole already being available. I don’t recall anyone suggesting that the big pharmaceutical companies might actually come up with a therapeutic regime which actually helps patients get better.
Mainstream medical doctors, stuck between the medical dogma that nothing can be done, and a patient whom the doctor believes will die of ALS, usually put off telling the patient what’s going on until the patient has pretty much already figured out he or she is doomed. Or, the doctor may refer the patient to another doctor so someone else can get stuck with the unpleasant task.
Famous people who died of ALS include baseball player Lou Gehrig, Senator Jacob Javits, popular physicist Stephen Hawking, and Chairman Mao. About 1993 my non-famous friend John McKissick of
ALS is a treatable disease.
What’s made it treatable is the Internet. The Internet has given ALS patients access to a wide variety of scientific information about ALS, including information provided by ALS patients themselves which could not have come from the medical profit centers.
Doctors in general can’t devote much time to an uncommon disease they were told in med school was untreatable anyhow. On the other hand, quite a few ALS patients are highly motivated to invest in research and experimentation because after all, their very lives are at stake. And, patients have a human guinea pig available them 24 hours a day. My boss invested by allowing me to research ALS on company time because he didn’t want to lose a key employee, and because he had confidence that I could find a way to cure a supposedly incurable disease.
Beginning November 04 I was on crutches due to minor knee injury. In April 05 my right quadriceps was paralyzed and partially atrophied, and the orthopedist diagnosed it as a neurological problem. In June 05 thanks to the Internet I figured out what was going on, spent July researching therapies, and began therapy in August. That summer I had been headed downhill fast, but during the fall I began to stabilize. In December 05 I experienced a dramatic improvement, and since then have not needed crutches or a cane. During the spring of 06 I have been mountain hiking regularly, and taught myself how to run and to kick again. In early June I chased a jackrabbit through the desert shrubbery with sufficient enthusiasm that the creature actually thought he was gonna get caught. My “inner dog” had such a good gloat that I raised the previously paralyzed right leg on a fire hydrant. In mid-June I walked to
[As of late June ‘06] I still have clinical signs of both upper and lower motor neuron disease, but my neurological symptoms are usually so mild that I would probably ignore them had I not gotten to my present condition the hard way. My objective now is to eliminate all the signs and symptoms of ongoing motor neuron disease: only time will tell whether that will be successful. The partial atrophy of my right leg (from which I will probably not recover) is a minor nuisance which does not prevent me from doing all the things that most 60-year-old folks can do.
F.D.A. NOTICE: The information I provide in this document is not “official medical advice”. If you have ALS, you should be seeing a licensed medical doctor, preferably a neurologist; and/or a licensed naturopathic practitioner. You should also be doing research (esp. on the Web) as fast as you can, because you don’t likely have much time left. That having been said, I declare emphatically that the information I provide here is for the purpose of healing. It is a labor of love without expectation of financial reward, and it is leading-edge scientific research done competently. That’s what it is. Like anything done on the leading edge, it has flaws and shortcomings not all of which can be known at this time. If you want the security of certainty, call a cemetery and ask for directions how to get there: if you’ve got ALS your medical doctor may (unfortunately) be able to give you the same set of directions. ….This document is my practice of the religion of “the lame shall leap like a stag”, which not even the mighty F.D.A. is powerful enough to gainsay. Amen.