What follows is a fascinating e mail I received from Brad who has given me permission to post it here.
Robert Rodgers, Ph.D.
I am still “in the closet”, so to speak, that is to say I have not publicly discussed my diagnosis. I am very new to this discovery as I received my diagnosis one year ago (at age 52). Sometimes I get “PD’ed” by strangers who notice my symptoms and ask (or tell) point blank that I “have Parkinson’s”, which I cannot evade. The only purpose for taking the currently available meds is too hide the condition from others during, say, public speaking or other event which might lead to self-consiousness or embarrassment. The meds serve no other purpose, they do not treat any underlying condition whatsoever. I suspect this denial, or hiding from PD symptoms, is very psychologically damaging (Michael J. Fox treats this in depth in his books). It leads to over medicating and adds stress, thereby worsening the condition.
In my case, I was lead to believe that the use of L-Dopa would provide dramatic relief and thereby confirm the diagnosis (remember that PD is a “negative” diagnosis, that is, it is indicated by ruling out all other possible explanations, however, in reality this is impossible to do. So PD is labeled “idiopathic”, or of unknown causation). Instead of relief, absolutely nothing happened, except that I immediately worsened and developed new symptoms in addition to a multitude of side effects. My brain has resisted L-Dopa therapy over these twelve months. L-Dopa is only sporadically effective and is very hard to predict. It takes very high doses to alleviate all symptoms (breifly) and during periods of high stress (particularly social stress) it does not work at all. So I have made a conscious decision to minimize my use of L-Dopa and seek alternatives right from the start. Sometimes I go for days without medicating at all and my symptoms usually stay about the same or sometimes better.
Things I am doing that seem to help:
Continue to ride and race bicycles. I have had to give up certain types of racing that require extremely fine motor skills, but I ride with accomplished groups regularly, at least 5,000 miles per year. Balancing a bicycle utilizes different neural circuits from your center of gravity than balancing on your feet, so I actually cycle better than I stand or walk. Some medication is required to control dystonia and keep my “slow” leg in sync with my “fast” leg, but I have experienced symptom-free rides occasionally.
Continue serious weight training. Since lifting weights does not involve high speed movements, it is largely unaffected by the symptoms. I have always been very strong and have become even stronger with pd symptoms than I was previously.
All other forms of physical activity, such as stretching, hand and finger exercises, table tennis, hiking, walking, basketball, anything that involves motion.
Healthy food, water, and sleep/rest. Avoid all trauma and toxins insofar as possible. Drama-free social life, mental engagement and exercise, healthy spiritual practices. These seem to be so “common sense” that they may be overlooked, but the proof is in disrupting any one of these and the symptoms immediately worsen. Improve them, and they immediately get better. Simple.
“Alternative therapies” that I am trying or considering include mercury detox. This is very dangerous, because disturbing mercury in dental work and/or chelating mercury that has been bound to brain tissues for a long time can worsen matters by “stirring up” heavy metals that may then be reabsorbed or recirculated prior to elimination. A personal decision has to be made balancing the risk/possible benefits of this approach. It is too early to tell what impact this decision will have on me because I have only had mercury-free teeth for less than thirty days after more than thirty years. I do believe eventually mercury will be banned in dental work. There are better alternatives available. My dentist conceded only after agreeing that having already developed pd symptoms, the levels of mercury that may be safe for a normal healthy adult might not be appropriate for me.
Hypnotherapy is showing great promise. If nothing else, achieving relaxed states reduces stress. However, even western medicine recognizes “psychogenic Parkinson’s”, from which full recovery is possible. It distinguishes this from “real” or “organic” Parkinson’s which by definition precludes recovery. So if you recover, it must have been psychogenic and vice-versa, if you don’t recover it’s not psychogenic. This is circular reasoning. Self-observation proves that all PD is at least partially psychogenic. Besides, it is a Western assumption, wholly based on faith, that there is any real difference between the mind/spirit and body at all. There is plenty of evidence, including in Western science, that there is no difference. One cannot exist or be healthy without the other. During hypnotic states (basically that relaxed dreamy state just before falling asleep), observable symptoms abate. What more proof that these symptoms are controlled by mental states (or brain waves, if you will) is needed?
Long held attitudes and “belief systems” are hard to change but they clearly play a role in recovery. There is a website with which you may be familiar, it’s www.pdrecoveryproject.org, I think, that discusses this in depth. It’s chapter 45 of a lengthy treatise. It’s basic theory is that negative self-hypnosis or “accidental” hypnosis is a causitive factor in PD symptoms. At home, we avoid using the term “disease” or even “Parkinson’s”, instead referring to “Mr. P” or “my condition” or “symptoms” because one thing is for sure, if for one minute, you believe that you will not recover, your prophecy will be self-fulfilled. On the other hand, if you believe improvement or recovery is possible (not guaranteed), then that will be true also. Cancer victims refer to “fighting” cancer, PD’ers often talk about “accepting” PD. While “accepting” oneself as one is or accepting the public acknowledgement of your symptoms may be helpful, the will to live (not mere survival, but living well) is the driving force behind recovery from any illness.
On the drawing board: acupuncture. The brain is an electrical system. Western science proves this through DBS. DBS, however, is a crude and intrusive means of maintaining that system. Again, the website mentioned above details how electrical disuptions in other parts of the body (particularly the foot or ankle) may affect the brain. I had such a traumatic injury in which the tibia was fractured and did not “knit” after 99 days in a cast. Subsequently, a “TENS” unit was utilized passing an electrical current, night and day, for several months through the fracture. While this did cause an 80% “healing” of the bone to occur, there may have been electrical side effects unbeknownst to me from this therapy.
I realize that this is rather lengthy, but PD is a vastly complex and mysterious condition. The mere lack of dopamine is neither it’s cause nor solution. I agree with you that the current scientific research will never result in a “cure” because there are a multiplicity of causes and therefore a multiplicity of “cures”.
I appreciate this opportunity to share my thoughts in writing because it has helped me be a little more organized in my own research and thinking. I do not yet know in what way my experience may be used to help others, but I will consider your idea. Thank you for your time and the work that you are doing.