Treating Parkinson's

There are three main problems in treating Parkinson’s Disease. Everyone’s symptoms are 

different so everyone’s treatment plan is unique to them, the disease is progressive and only gets worse, and there is no cure.

There is no standard diagnostic test for PD only a collection of symptoms. There are four main motor symptoms - tremor, bradykinesia, rigidity, postural instability - and 10 or 11 secondary motor symptoms - freezing in place, unwanted acceleration, speech problems, micrographia (cramped handwriting that gets progressively smaller)- as well as 10 - 15 non motor symptoms - depression, anxiety, mood changes, fatigue, sleep problems, cognition problems, excessive saliva, etc. According to my neurologist, if you have three or more of the major symptoms you have PD.

Since everyone has a different collection of symptoms and each symptom shows to a different degree, the treatment for each person is different because the symptoms are what are addressed. Then the meds affect each of us differently. A med can help one person, make another hallucinate, and seem to have no affect on a third.

The real problem of course is that PD is progressive and there is no cure. It just gets worse. But in face of that many people with PD live their life as if they have the cure in their hands, they are the cure. They have taken the responsibility of improving their life upon themselves. They are not ignoring established PD medical practice. Seeing the doctor and taking pills is only one part of dealing with PD. I learned more about dealing with PD and managing my symptoms from fellow people with PD than I have from doctors. We are our own best resource. In fact, doctors seem genuinely interested in learning from me.

Most people with PD that I know are their own doctor making decisions as to how to best treat the disease. They consult with their friends in the PD community as well as their doctor. The latest research, how best to deal with and how to treat PD, is an ongoing active discussion topic among PWP.

There is always exciting news about possible cures and new treatments for Parkinson’s but everyday treatment is essentially the same since the 1960’s introduction of levodopa which is converted into dopamine in the brain. Modern research into gene therapy and stem cell treatments is promising but in 1817 in his “Essay On The Shaking Palsy” Dr. Parkinson’s predicted “Although, at present, uninformed as to the precise nature of the disease, still it ought not to be considered as one against which there exists no countervailing remedy. On the contrary, there appears to be sufficient reason for hoping that some remedial process may ere long be discovered, by which, at least, the progress of the disease may be stopped.” The good doctor described the disease well but had a little too much faith in the medical communities ability to stop the progression of or cure PD. It’s been 200 years and we are still uninformed as to the precise nature, there still is no cure, and nothing stops the progression of the disease. The best thing you can do is be healthy, take you meds as prescribed, exercise, and to enjoy and live your life.

Parkinson's And Chocolate

Parkinson’s has been known and studied for hundreds of years but in many ways not much is known about it especially how to prevent it, stop the progression of it, or cure the disease. Research is often contradictory. The latest uncertainty is about chocolate. Is it good for PD, is it bad for PD, or does not affect PD at all? Interesting fact, people with Parkinson’s seem to like and consume significantly more chocolate than people that don’t have PD even in people where consumption in the amount of other sweets is the same.

What is chocolate and why does it taste so good? The word “chocolate” comes from the Aztec language word xocolātl which is a combination of the words xococ (meaning ‘sour or bitter’), and ātl (‘water or drink’) because for most of it’s existence chocolate was consumed as a drink. Chocolate contains stimulants like phenylethylamine (B-PEA) and caffeine which give you a positive boost and the feel good chemical anandamine. Europeans added sugar and honey as sweeteners. The result is that nearly everyone likes it and the rest is history.

A study by Dresden University of Technology in Germany has suggested that eating dark chocolate on a daily basis could help ease symptoms of Parkinson's disease. It is believed that phenylethlamine, a cocoa compound, can increase the release of dopamine in the brain and help prevent PD symptoms like tremors. 

A word of warning though, the same phenylethlamine may be toxic to dopamine neurons. Some studies cautioned not to eat too much dark chocolate as it is one of the foods richest in B-phenethylamine which may actually cause Parkinson’s. B-PEA could lead to the production of hydroxyl radicals that stress dopamine producing areas of the brain and cause PD.

Other studies report that chocolate neither harms nor is beneficial for PD and that more research is needed. I would volunteer for that clinical trial. It would be a honey of a study and produce one sweet report. So what is a poor PWP to do? If you like chocolate eat it with pleasure.

New Non Invasive DBS

There are now two brain procedures that are FDA approved for use in Parkinson’s: deep brain stimulation (DBS) and non invasive high intensity focused ultrasound (FUS). Deep Brain Stimulation has been successfully used more than 160,000 times to treat people with movement disorders (Parkinson’s, essential tremors. dystonia), neurodegenerative disease (Alzheimer’s), neurological disorders (epilepsy), and increasingly for psychiatric disorders (depression, Tourette’s disease). DBS works by delivering constant electrical stimulation to problem areas of the brain similar in concept to a pacemaker for the heart. It involves implanting electrodes deep within the brain. The amount of stimulation delivered by the electrode is controlled by a pacemaker-like device placed under the skin in the chest. DBS is a physical operation that drills holes in you head and inserts electrodes into target areas deep within the brain as a first step. This part of the procedure is done with the patient conscious so they can answer questions and respond to instructions by the surgeon. The second part of the procedure involves inserting a neurotransmitter, usually just below the collarbone, that sends electrical pulses to the electrodes through wires running from the brain under the skin of the head, neck, and shoulders to the transmitter.

I’ve had Parkinson’s  for eight years and would like the benefits of DBS but am afraid of the operation. Drill holes in my head, stick electrodes in my brain, insert a battery pack transmitter in my chest, and run wires inside my body - you have to be kidding, definitely not for me, too scary. I know it’s helped a lot of people but no thank you. I pass on DBS. That is until now because in 2018 the FDA approved a new non invasive DBS for use with PD tremors and PD related dyskinesia that does not benefit from medicine.

Focused ultrasound is a non-invasive surgical procedure that uses ultrasound waves to destroy brain cells in the basal ganglia that cause movement problems. FUS is FDA approved to treat Parkinson’s tremors and is in clinical trials for dyskinesia (uncontrolled, involuntary movements that can develop with long-term use of levodopa). MRI brain imaging is used to precisely guide and direct high intensity focused ultrasound waves to destroy target cells deep in the brain that cause movement problems without harming non target tissue.

Focused ultrasound is a one step procedure that is non invasive and does not require putting electrodes in the brain, batteries that need replacing or recharging in the chest, or wires that connect them and does not need doctor office visits for programming. It uses MRI imaging to guide ultrasound beams to destroy brain cells that cause tremor without requiring anesthesia. Ultrasound is not reversible because it destroys brain cells. The problem with focused ultrasound is that it can now be performed on only one side off the brain meaning it eases symptoms on only one side of the body. When done on both sides it caused problems with speech, swallowing, and cognition. Unlike DBS, FUS does not require any maintenance. There are no wires, electrodes, or batteries, and it does not need repeated doctor visits for programming. FUS is new. We do not know the long term effects. DBS has been around for twenty years and is well tested and known. It usually benefits PWP for about ten years.

Both DBS and FUS help alleviate symptoms. What we really need is a cure.

Famous People With PD

 

Neurological disorders are now the leading cause of disability. Parkinson’s disease is the fastest growing disability. More than 10 million people worldwide have been diagnosed with Parkinson’s. Some as early as 20 years old others not until 80. Researchers believe the number of people with PD will double by the year 2040.

Michael J. Fox, Actor, Parkinson’s Activist, diagnosed in 1991 when 29 years old

Muhammad Ali, World Champion boxer,  PD Activist, diagnosed in 1984 at age 42 

Bhumibol Adulyade, King of Thailand, when diagnosed not known

Alan Alda, Actor, diagnosed in 2015 at age 79 

Roger Bannister, Champion Olympic Athlete, diagnosed 2011 at age 81

Margaret Bourke-White, Photographer, first celebrity to reveal PD diagnosis in 1952 at age 48 

George H. W. Bush, 41st US President, diagnosed in 2012 at age 88

Michael Richard Clifford, Astronaut, PD Activist, diagnosed in 1994 at age 42 

Salvador Dali, Artist, diagnosed in 1980 at age 76

Neil Diamond, Musician, diagnosed in 2018 at age 77

Francisco Franco, Spanish Dictator, diagnosed in 1965 at age 73

Kurt Gibson, Baseball Player, PD Activist, diagnosed in 2015 at age 61

Billy Graham, Evangelist, diagnosed in 1993 at age 75

Brian Grant, Professional Basketball Player, PD Activist, diagnosed in 2008 at age 36

Chester Himes, Author, when diagnosed not known

Ian Holm,  Actor, diagnosed in 2001 at age 70

Jesse Jackson, Civil Rights Leader, diagnosed in 2015 at age 74

Dave Jennings, Professional Football Player, diagnosed in 1996 at age 44

Ba Jin, Chinese Author and Political Activist, diagnosed in 1983 at age 79

Pauline Kael, Film Critic, diagnosed in 1982 at age 63

Deborah Kerr, Actress, diagnosed in 1992 at age 71

Gene McCarthy, American politician, when diagnosed not known

Mao Zedong, Chinese Revolutionary Leader, diagnosed in 19710 at age 78

Ozzy Osborne, Musician, diagnosed in 2019 at age 70

Pope John Paul II, Pope, diagnosed in 1991 at age 70

Ben Petrick, Baseball Player, diagnosed in 1999 at age 22

Davis Phinney, Cycling Champion, PD Activist, diagnosed in 2000 at age 41

Vincent Price, Actor, diagnosed in 1990 age 79

Sir Michael Redgrave, Actor, diagnosed in 1972 age 64

Janet Reno, US Attorney General, PD Activist, diagnosed in 1995 at age 57

Linda Ronstadt, Musician, diagnosed in 2012 at age 66

Charles Schulz, Created Peanuts, diagnosed in 1975 at age 53

Terry Thomas, Comedian, diagnosed in 1971 at age 60

Glen Tipton, Musician, diagnosed in 2008 at age 61

Pierre Elliot Trudeau, Canadian Prime Minister, diagnosed in 1996??? at age 76

George Wallace, American Politician, diagnosed in 1992 at age 73

Robin Williams, Actor, diagnosed in 2014 at age 63

Parkinson's Self Care

You are a doctor, your own doctor. Parkinson’s demands it.  Realizing that you have the disease

is the easy part. It’s not subtle. After a while you can’t ignore it. Knowing what to do about it is a little harder. Parkinson’s is a full time disease demanding 24 hour a day full time care. Symptoms and how you feel can be different every day often changing hour to hour and sometimes by the minute. It requires the full time care of a full time doctor. You are that doctor. You are your own personal doctor by necessity.

Every PWP has a different set of symptoms and each symptom shows to a different degree. Therefore the treatment each person needs is unique because the symptoms are what are addressed. Then the meds affect each of us differently. A med can help one person, make another hallucinate, and seem to have no affect on a third. You are the person who best knows and understands what helps and what doesn’t. Therefore many PWP have taken the responsibility of dealing with the disease and improving their life upon themselves. They are not ignoring established PD medical practice. Seeing the doctor once or twice a year for an hour and taking pills is only one part of dealing with PD. The real work is trying to minimize the daily impact and misery of the disease by taking responsibility for the day to day active management of PD.

Self care does not mean taking care of your physical, emotional, psychological, and spiritual health by yourself. It is one aspect of a collaborative management approach to PD in which patients, caregivers, and healthcare practitioners all work together toward shared specific goals. It is a full time job, not to be taken lightly. It requires taking the active management of the disease and symptoms upon yourself and making continuous adjustments in order to minimize the affect of PD. You manage the disease instead of it managing you. 

Become expert at self care. Track your symptoms, when they occur, what makes them better and what makes them worse. Notice when you feel good. Write it down. Look for patterns. Check in with yourself throughout the day and make adjustments as needed and see if they help. Discuss what you learn with your neurologist and other PWP. Make your home into a safe place where you can feel good when things are bad. Learn to communicate your needs to those around you. Don’t keep them bottled up inside. Surround yourself with good people that you can go to and count on when things are bad. The PD community understands what you are going through and can help. I have learned more about dealing with PD and managing my symptoms from fellow people with PD than I have from doctors. We are our own best resource.

The real problem of course is that PD is progressive and there is no cure. It just gets worse. In face of that it is up to you to live your life as though you have the cure in your hands, you are the cure. Take responsibility for improving your life upon yourself. You are your own best resource. My doctor seems genuinely interested in learning what I do to survive. 

Finally, plan for the future in order to enjoy and make the most of life at any age and stage of PD. This may sound a little touchy feely but what you have to do is understand and accept and love yourself as you are now, not hang on to what you were before PD. Your world changed. Parkinson’s will take you places you haven’t been before and challenge you in ways you weren’t challenged before. Better get ready. The train is coming.