As you know, the current opinion regarding PSP, Progressive Supranuclear Palsy, is that there is no known cause or cure. I am a holistic clinician who fortunately had the opportunity to give a second opinion for one person with PSP. I was also given a very short treatment window to affect the course of this rare progressive neurological disease. The patient’s family bias against any alternative treatments was overt. Five follow-up evaluations was supposed to be the initial care phase; not the end of care. So in such a limited clinical window of only 5 visits, we could only expect a minimal positive outcome. Our initial goal was to possibly slow the disease’s known progressive course of neurodegeneration, or see some return of function.
Progress toward our goal was measured by our observation of any positive changes compared to her initial physical tests. Additionally, to enable another way to track progress, we obtained a broad array of new blood test values. They were intended to be correlated with subsequent values after our initial phase of care. Unfortunately, due to bias from the patient’s family, that subsequent blood test panel never happened.
Regardless of my clinically observed progress, the patient’s husband believed only in outcome failure. His blame was on my care, but not on any of the patient’s long-term medications prescribed by doctors before me. Why? Because as the patient’s husband said, “THEY aren’t promising anything.”
Progressive supranuclear palsy treatment
With conventional medical interventions, the PSP disease is predictably progressive. It was the same when the famous actor Dudley Moore first presented with symptoms of this disease in February 1998. As far as I know, there has been no advancement in therapies for PSP. Certainly, there are no new drugs showing any promise for patients with this progressive neurological disease. Any drug therapy used today is strictly to hide as many symptoms as possible. Still, the PSP disease continually progresses on its known course. Eventually this symptom management strategy will fail. My patient stated that her doctor told her to try to keep using her walker and keep out of a wheelchair for as long as she could, because once she would start using a wheelchair she would never get out.
According to Dr. Lawrence Golbe, UMDNJ-Robert Wood Johnson Medical School, New Brunswick, NJ: “[PSP] typically produces a chair-bound state 5 or 6 years into the illness.” (1) A lady from Greece wrote to tell me her mother didn’t even last 4 years after the PSP diagnosis.
The drugs my patient had been prescribed, by well-meaning doctors, for the off-label implication of slowing the progression of the disease (they’re not promising anything? really?), have descriptions that clearly state they do NOT slow the progression of the disease (the neurodegeneration) AT ALL, and are NOT a cure. “No drug treatment significantly and consistently benefits patients, and novel therapies are urgently required.”
Furthermore, the description of one of the acute-care drugs that was prescribed for her, “Namenda” (Memantine) says that it might decrease brain plasticity. Decrease brain plasticity? This is a clear contraindication for a person with PSP, or any chronic neurodegenerative condition affecting the brain. That is, of course, unless the prescribing doctor fully believes that the patient has no chance anyway. If the doctors believe the patient has no chance, it explains why they wouldn’t care about about brain plasticity. In the face of such a chronic disease, brain plasticity is all she’s got! It’s her only hope!
I discussed this stated side effect of Namenda with my patient and spouse, and asked them to mention it to her prescribing doctor, but at our next visit they said their doctor said “keep taking it.” And they’re “not promising anything?” Really? Let me tell you what her other doctors are promising: they are promising certain clinical failure.
Brain plasticity is the healing and repairing mechanism of the brain.
Brain plasticity is the inherent potential ability of the brain to remodel and rebuild. Current scientific literature supports the idea that the potential for brain plasticity can be influenced with clinical nutrition.
Regarding NMDA receptor antagonists, which is what Namenda is: “blockade of synaptic transmission mediated by NMDA receptors hinders neuronal survival.” But you WANT neuronal survival. Neurons are nerve cells. We want to ENHANCE neuronal survival any way we can. Otherwise, you get progressive brain degeneration (nerve cell death) with no way to prevent brain decline, or neurodegeneration. A Namenda prescription guarantees failure of alternative therapeutic interventions. Any alternative therapy will fail. Alternative nutritional support will fail. Any alternative to other failing treatment will fail because this prescription treatment blocks brain plasticity and hinders nerve survival. Don’t believe the commercials about this drug that you may have seen on TV, or the manufacturer’s website!
I saw the patient, a woman of 69 years, approximately once every 2 weeks for 5 visits. At each visit, I examined her and observed the numerous neuromuscular responses elicited during my examination. This is a key component of my approach. The purpose of these repeated tests are to observe if the neuromuscular responses are normal or not. Furthermore, we observe which natural medicines appears to have a normalizing influence on those responses, in real time.
Through consistent responses in the physical exam, I pinpoint my recommendation for the best course of supportive functional nutrition. Upon follow-up visits, re-evaluation shows the success, or not, of the normalizing factors we introduced at the previous visit. To subsequently observe normalized responses suggests better functioning of the core systems playing some role in each specific response. “Increasingly more normalized” is what I was observing with this patient’s responses.
“Increasingly more normal is what I was observing with this patient’s responses”
This is a functional medicine approach. Part of our goal is to influence epigenetics, when these tests indicate that doing so would be beneficial. What this means is “detoxication,” (supporting purification mechanisms) may be one of the major factors we need for greater function. According to the latest scientific research, epigenetic mechanisms can underly the CNS’s [Central Nervous System’s] capacity to regenerate.*
* R. Puttagunta et al. ‘PCAF-dependent epigenetic changes promote axonal regeneration in the central nervous system’, Nature Communications (2014)
If I would have known about infrared video oculography and if it were available locally, I would have ordered that test at the outset of my care to objectively monitor any positive progress under my care. As Dr. Stephen Reich of the Johns Hopkins School of Medicine, Baltimore, MD once wrote: “at the New Jersey Neuroscience Institute. Using a technique known as infrared video oculography, they were able to measure the speed of Mr. Moore’s eye movements. This demonstrated that his vertical eye movements were very slow and this is one of the earliest features of PSP, but often difficult to appreciate clinically.“
I didn’t order that test, but I did run a full panel of blood tests at the outset of care. I evaluated the lab results from a functional medicine perspective. All this is background for my own clinical observations regarding one woman with a diagnosis of PSP.
The Potential Set-Up of a Person To Develop PSP
Through my clinical testing, I found that she had a very high level of oxidative stress. She needed one particular supplement (Glutathione Recycler) at 4 per day for several weeks (re-evaluation every other week). Comparatively, I never had seen such a high pill requirement, for that long, for this particular clinical nutrition supplement. This finding coincides with the current science showing that oxidative stress depletes the levels of glutathione needed for efficient NMDA function at the NMDA receptors of the brain. You don’t need to stimulate those receptors, you need to protect them! Glutathione is the body’s own protector from oxidative stress. It’s in every cell. We can support that protection mechanism with the proper clinical nutrition.
Together with massive oxidative stress, the following factors, in my opinion, MUST be considered in any person diagnosed with PSP. Their combination may be the true underlying keys to the mechanisms that could cause PSP. In other words, I think these things, combined, caused her PSP. Addressing these core factors, naturally, not with drugs that cover-over symptoms, is the key.
Hemoglobin A1C above 5.6% or any Type II diabetes (insulin resistance), especially type II diabetes being treated with insulin. Type III diabetes is insulin resistance in the brain, and needs a metabolic correction with diet and supplementation. Drug therapy fails.
Total cholesterol lower than 150 units, and still using cholesterol-lowering drugs. You will have to ask the prescribing doctor to discontinue this slow brain destroyer.
Common long-term prescriptions in patients with progressive supranuclear palsy
Any Thyroid Condition requiring Thyroid hormones. Sub Optimal Thyroid markers such as: Total T3 less than 100 ng/dL, Free T3 less than 3.0 pg/ml, reverse T3 out of range. You must address the functional medicine aspects of thyroid. It’s NOT enough to just take Thyroxine (T4).
Please Note: Several people have contacted me regarding PSP and a Thyriod diagnosis was part of the picture. Thyrioid hormones drive brain function. Thyroid medicines only correct one marker related to thyroid hormone balance. The rest of the lab markers for thyroid make a big difference, yet they are not routinely checked. Some doctors flatly refuse to check the full thyroid panel (thyroid antibodies, free T3, total T3, T3 uptake, reverse T3, free T4, total T4, and TSH).
Please also note that Amiodarone Induced Hypothyroidism (AIH) should definitely be evaluated any time a person is taking that drug for longer than just temporarily. Do not overlook this cause of hypothyroidism via prolonged use of Amiodarone. The cause of AIH is a doctor who won’t take a patient off a medicine when it is no longer needed.
Additional risk factors for developing progressive supranuclear palsy
CRP (c-reactive protein) above 3.0 mg/L. This lab result shows underlying inflammation and a need for a functional medicine approach.
Any indication of immune system activation: WBCs >8.0, or infection: WBCs >11.0. Please note: vaccines activate the immune system. That’s what they are designed to do. Please understand, for your loved one with progressive supranuclear palsy.
Any indication of chronic immune depletion, where WBC count is less than 5.0.
Regular use of antacids of any kind; prescription, or OTC; Tums or Rolaids included. This needs proper functional medicine management.
Neuroinflammation (brain on fire) as documented in advanced imaging studies.
Any indication of oxidative stress overload (can be as simple as an oxidata urine test, available at my office). Oxidative stress makes everything worse.
I propose that these factors ARE the key players in the long-term development of PSP. Furthermore, the prevention and correction of these factors (not the covering-over of symptoms by more pharmaceuticals) could be the only way available to stop the progression of this rare neuro-degenerative disease known as progressive supranuclear palsy. Don’t let any doctor tell you that the mentioned lab results and drug usage have nothing to do with brain function. They ALL do.
Even top expert medical doctors, or neurologists are not looking at these factors as causative of PSP. Nobody is looking ahead for patterns and clues because the textbooks still say that PSP has no known cause. Misguided research looks for drugs that can only cover-up some symptoms of the disease, without affecting the disease itself. In PSP, one such symptom is difficulty in swallowing liquids. Therefore, the doctors write prescriptions of a drug that slows down saliva production to counteract this symptom. So, is that all we’ve got? With that kind of treatment, anyone diagnosed with PSP really doesn’t have a chance. That is a terribly hopeless fate.
Why is there no investigation into the causation of this disease? Perhaps it would be too embarrassing to discover that the long-term prescriptions contribute to initiating the underlying condition!
I would be willing to be a team member in new clinical research investigating PSP. If you have interest in funding such a research project, please let me know.
If you care for someone with progressive supranuclear palsy (PSP), would you like my help putting this together for you? Our goal is to possibly slow the progression of the disease, or to possibly regain some function. I would be willing to be part of your medical team, so you may contact me.
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