Parkinson's
 
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Saying what we mean is so much better than putting shame into what we are saying.

By Doreen T. Sutherland, MBA

What we say is a literal shame.  We use shaming, blaming words and we don’t even know it. I do it. You do it. We all do it. We must stop. Here are some words to think about.

Don’t say COMMITTED suicide. It sounds like you’re saying the person committed a crime like stealing, attacking someone or murder. Suicide is not a crime; it’s the product of a medical illness. Let’s be part of the modern era and stop hiding behind our mothers’ aprons. It’s died OF pnemonia, heart attack, stroke, cancer, suicide. 

Don’t say she IS bipolar or she IS schizophenic. People are actually people first and foremost. SOME people get diseases and chronic physical or mental health conditions. The disease is not their identity and it does not define their character or who they are. She is not pneumonia or cancer. She HAS bipolar disorder or she has OCD or she is a person WITH bipolar disorder. That simple change makes “bipolar” the noun it should be and absolves it of the ugly responsibility of being a reluctant adjective or adverb.

Don’t say he IS an addict. Again, people are people, not a disease and this blames him for being part of a group harboring a disease in the same way that we once labeled lepers. He is a person who may have an addiction or a substance abuse disorder. Say he HAS an addiction.

For medical professionals: Don’t say the patient IS NON-COMPLIANT. This is a tough one because it’s so convenient as short hand. What’s really happening is that we are blaming a patient for not following a plan that they may not have understood or have agreed to follow. They may not have had the money to buy the medication, had transportation to get to the referral or had a lack of education that is preventing them from following the plan. Rather than placing “non-compliant” in the permanent record it might be useful to ask, “ WHY ISN”T THE TREATMENT WORKING?”

PROVIDER is an awful word. (And I am guilty of using it. You can probably find it in this blog somewhere.) Providers provide something. Anything. In medicine, a provider is an economic term that places all revenue generators together. It’s offensive to those who have spent dozens of years to master their profession. Say PHYSICIAN, SURGEON, HEALTH PROFESSIONAL.

MIDLEVEL is also a rotten word. Midlevel provider (two lousy words) is a word designed by MBAs to describe the revenue generators in medicine that are somewhere between the doctors and the nurses. I am wondering why the MBAs (like myself) don’t prefer to be called MIDLEVEL ACADEMICS since we are somewhere between those with bachelors degrees and PhDs when it comes to knowledge about these things. It’s better to say PHYSICIAN ASSISTANT.

Saying what we mean is so much better than putting shame into what we are saying.


Inspired by Pamela Wible, MD


 
 
In mid-June, Gov. Rick Scott signed into law a bill that allows a limited number of patients, including Parkinson’s patients, access to the medical marijuana product known as “Charlotte’s Web.” Charlotte’s Web received national attention when it was highlighted on the CNN special, “Weed” by Dr. Sanjay Gupta earlier this year. The special examined the plant’s ability to slow down or stop epileptic seizures in young children.  The drug is named after Charlotte Figi, a five-year old who experienced a reduction of seizures after taking it.

Florida places a number of restrictions on the strain for which patients could begin receiving prescriptions as early as January 2015. The marijuana can’t be smoked and would need to be converted to an oil. The law severely limits the percentage of THC, the chemical that makes users feel high, to 0.8 percent, while on average, marijuana has about 15 percent THC, according to the National Institute on Drug Abuse. The strain has normal levels of cannabidiol, or CBD, which is used to treat seizures. You can’t simply go to a doctor and get it on the first day that you see him or her. The law states that you must be receiving ongoing treatment and that it will be prescribed only as a last resort if other treatments aren’t effective. With all that said, there is also a constitutional amendment on Florida’s November ballot that would allow patients access to full-fledged medical marijuana.

Scientists have been studying how the brain processes cannabinoids to develop drugs that follow the same pathways but work differently than marijuana for some time. Several drugs which either contain or have similar chemicals to those found in the marijuana plant are: Sativex, as a treatment for MS and Cancer, is approved in the UK; Marinol, as an appetite stimulator and nausea treatment, is approved in the US; and Cesamet, as a treatment for nausea and vomiting in Cancer patients, is approved in the US. So the idea has not escaped the pharmaceutical industry, but federal laws prohibiting the possession and use of the plant have stymied research efforts historically. 

Parkinson’s disease is named among the illnesses to be treated by marijuana if the amendment is passed. In the majority of cases, when it comes to Parkinson’s and marijuana treatment, much evidence comes in the form of anecdotal patient stories and very small, uncontrolled studies. There are claims that it can be cost effective; has fewer side effects; and has strong healing possibilities. While this may be true, without thorough study, neurologists in states where medical marijuana is legal say they have granted very few certifications for its use. Possibly this is because clinical trials have yielded conflicting results. For example, twenty-two patients attending a motor disorders clinic were evaluated before and 30 minutes after using marijuana and significant improvement in tremor, slowness and rigidity was observed. Sleep and pain scores also improved. Another randomized clinical study showed no improvements in dyskinesias or Parkinsonisms. Proponents of cannabis say that the drug can help with tremor, stiffness, pain and anxiety. The majority of doctors believe that larger scientific studies (that all use the same chemical cannabis formula) are needed to determine whether or not positive changes occur in these areas. For those Parkinson patients whose treatment regime is failing to produce the desired results and for whom the available options are not promising, medical marijuana may be a reasonable option, but not an option that comes before changes in diet and exercise.

Neurologists are concerned not only about the lack of strong scientific evidence, but also about long-term side effects, quality control, where it comes from, what’s really in it and simple patient safety. Also a cause for concern is how the drug affects a patient’s thinking. A controlled study recently published in Neurology Today gives pause: On a battery of neuropsychological tests, multiple sclerosis patients who were regular users of marijuana performed worse than nonusers and had more diffuse cerebral activation on MRI while performing working memory tasks. Clearly, patients should be aware of the cognitive effects of marijuana on their activities of daily living. One will have to weigh the risk of falling and cognitive difficulty against the benefit of reduced tremor and pain before making the decision of whether or not to pursue marijuana as a treatment.

Sources:

Neurology Today: June 5, 2014, Volume 14, Issue 11, pg. 8-9. Functional Brain Abnormalities Linked to Cognitive Impairments in MS Patients Who Use Marijuana

CBS/Miami, May 2, 2014 2:08 PM. Florida Senate Approves “Charlotte’s Web” Medical Marijuana Bill

procon.org, 10 Pharmaceutical Drugs Based on Cannabis

Neurology Today, April 17, 2014, Vol. 14, Issue 8, pg. 1, 28-33. What Neurologists Are Doing About Medical Marijuana

Lotan, I., Treves, T.A., et al. Clinical Neuropharmacology, 2014 Mar-Apr; 37(2):41-4 Cannabis (medical marijuana) treatment for motor and non-motor symptoms of Parkinson disease: an open-label observational study

Carroll, C.B., Bain, P.G., et al., Neurology, 2004 Oct 12; 63(7):1245-50, Cannabis for dyskinesia in Parkinson disease: a randomized double-blind crossover study


Written by Doreen T. Sutherland, MBA
 
 
Thinking about adding cinnamon to your diet to fight Parkinson's? Cinnamon has been touted as a good supplement for cholesterol and diabetes, and now, Parkinson’s. Research conducted by Professor Kalipada Pahan and his associates at Rush University and published in the Journal of Neuroimmune Pharmacology, found that after oral feeding in mice, ground cinnamon is metabolized into sodium benzoate, which then enters into the brain and stops the loss of beneficial proteins (Parkin and DJ-1) and protects dopaminergic neurons. These are cells believed to be intimately involved in Parkinson disease.

Specifically, researchers say that, oral feeding of cinnamon powder produces sodium benzoate (NaB) in the blood and brain of mice. Sodium benzoate is an approved drug used in the treatment of neural disorders. It is also commonly found in soft drinks and is frequently used as a food preservative. Possibly the largest use of sodium benzoate, accounting for 30-35% of the total demand is as an anticorrosive, particularly as an additive to automotive engine antifreeze coolants, according to the World Health Organization.

Sodium benzoate is known to attach the mitochondria of DNA and some studies link sodium benzoate and DNA damage to negative outcomes in Parkinson disease and liver problems.

It is unknown how much cinnamon you would have to consume to experience these negative effects because the effects of chronic exposure to sodium benzoate have not been studied in humans.

Aside from sodium benzoate, Cinnamon contains another chemical that can cause liver damage.  Ceylon cinnamon, found in health food stores, is a purer variety, which contains less of this chemical, in case you are thinking of adding a significant amount of this spice to your diet.

Of Cinnamon Dr. Pahan says, “This could potentially be one of the safest approaches to halt disease progression in Parkinson’s patients.” This may very well be true. However, he also remarked, “Now we need to translate this finding to the clinic and test ground cinnamon in patients with PD. If these results are replicated in PD patients, it would be a remarkable advance in the treatment of this devastating neurodegenerative disease.”  Before you go out and invest in a cinnamon regimen, keep in mind that we don’t yet know if it will work in humans and the effects of long term repeated use of unusual amounts of cinnamon is unknown.


Written by Doreen Sutherland