Brief History Of Parkinson's

Contrary to popular belief Parkinson’s was not first discovered and described by Dr. James Parkinson in 1817. It is not a new disease and must have existed throughout time and therefore there are historical references to it. The first known mention of PD is found 5000 years ago in the ancient Indian Ayuverdic medical system. The next believed reference appears 2500 years ago in Chinese medical texts. References are pointed to in Greek and Roman times and in 175 AD the Greek physician Galen referred to PD as “shaking palsy”. Additional references appear for the next 1500 years until 1690 when the Hungarian doctor Ferenc Papai Pariz first described tremor, bradykinesia, rigidity, and postural instability as the four classic symptoms of PD. Don’t write in Hungarian in the 17th century if you want to be widely read and have a disease named after you. 

In 1817, Dr. James Parkinson published ”An Essay on the Shaking Palsy” and is mistakenly credited with discovering the disease. 60 years later the French neurologist Jean-Martin Charcot recognized the importance of Dr. Parkinson’s work and named the disease after him. The next 100 years are a blur of mostly misguided treatments: electric shock therapy, surgery on different areas of the brain, bleeding, arsenic, morphine, and mercury where the side effects of the treatment were usually worse than whatever relief they gave. For relief Dr. Parkinson recommended bloodletting from the neck and blistering of the skin with inserting pieces of cork to cause infection.

And then along came the Beatles and medical dopamine in the 1960s. What the Beatles were to popular music, dopamine was to PD. Since its FDA approval in 1970, Levodopa (L-DOPA) has been a staple for the management of Parkinson's disease symptoms and is often  referred to as the gold standard for treating PD. Dopamine cannot pass through the protective blood-brain barrier but L-DOPA can. L-DOPA is typically administered with carbidopa which helps preserve orally administered L-DOPA for conversion to dopamine in the brain. When taken orally, a small amount of L-DOPA passes into the brain and is converted into dopamine which may offer relief for some PD symptoms (tremors) for a short period. It doesn’t cure, prevent, or stop the progression of PD but relieves some symptoms for some people as do other drugs and Deep Brain Stimulation.

My doctor saiid he expects significant new treatments for PD to be discovered in the next 10 years. The problem is that he told me that six years ago and so far nothing concrete. I am not expecting a PD medical breakthrough that will hep me in my lifetime but there is a lot of interesting research into new medicines, new medicine delivery systems, new medical procedures, early diagnosis, and a new understanding of the disease which views PD not as one disease but a disease with many subtypes each requiring specialized treatment. After 5000 years and millions of dollars in research and many clinical trials we have medicines and DBS to help relieve some of the suffering but nothing yet to help prevent, delay the progression, or cure the disease.

Doctor I Have What?

"Doctor, I Have What!? Living With Parkinson's" is a short 
video developed by the PD Players of Berkeley, a small group of people living with PD who met at a Parkinson's dance class and realized that creativity could help them deal with the disease. 
Click on the video to play it. If its doesn't play then click on the URL below it. 

https://www.youtube.com/watch?v=pp7whlhyG9Y

Parkinson's Shapes My Day

A Nap A Day Helps Keep PD Away

I used to be a free floating soul taking each day as it came and going with whatever was happening. Parkinson’s changed that. In order to deal with PD I plan my days so they are structured and follow a regular pattern: wake up, eat breakfast, nap, take pill, exercise, eat lunch, maybe nap, walk, snack, exercise, take pill, eat dinner, walk, take pill, sleep. That is, unless I have the PD miseries in which case all bets are off and I go into survival mode and do anything I can to get through the day.

On okay days I structure the day by how I take my meds. One yellow twice a day and one blue once. The yellow is taken two hours after eating protein and one hour before. It’s best to take the blue at night, 45 minutes before bed. Lets see if

Experiencing Parkinson's

Parkinson’s is a life sentence of increasingly progressive punishment without chance of parole. You can see the best doctors, they cannot cure you, take the newest meds, they will only temporarily manage some of your symptoms, exercise day and night, it will not stop the progression of the disease. There is no miracle cure. People with Parkinson’s suffer more as the disease progresses. It is not something you can get used to because the symptoms change and develop over time. The disease will continue to progress and you will continue to get worse. At some point you will run out of medical options for dealing with the disease. At that point you are on your own and how you experience the disease will determine what you do and how well you survive. That Parkinson’s is miserable is a fact. I have to accept that I may never feel physically well again. What I do with that, how I experience it, could determine the quality of the rest of my life. Medical facts can be tempered by individual experience. The reality is that I have PD. How I experience it is up to me.

Disease is not objective. It is experienced. Parkinson’s more so than others. PD symptoms are different for each person and each symptom affects each of us uniquely. Tremors are the most common and noticeable symptom. A friend with PD is very happy that she doesn’t shake but has Parkinson’s with Lewy Body Dementia and is loosing her mind without knowing it. Factually she has Parkinson’s but she doesn’t consciously experience it. 

Another friend has had PD for more than 15 years. He has noticeable tremors and balance problems that lead to falls. Parts of his body are twisted (dystonia). He believes that he has the disease under control and is basically ok and not doing too badly. You might think his belief is not based on fact but experience is not objective. 

I was diagnosed in 2012 and the physical symptoms of tremors and lack of balance are suddenly really kicking in. I had the PD miseries the other day, heavy on the symptoms and an acute dose of anxiety. It was really getting to me. Then some friends came over, took my mind off it and my experience changed. Some people are not bothered by the fact that they shake. Others are. Each person experiences the disease differently. Facts fade. How we experience our experience becomes our reality.

When I first experienced symptoms I went to a neurologist. I shook a little but had been shaking all my life and so entered his office feeling good as a healthy human being and came out labeled as a neurological disease called Parkinson’s. He prescribed meds that may or may not be helping me. It is hard for me to be objective due to the misery of the disease. My mental attitude was good. I remember thinking that I could handle this if it doesn’t get worse. Little did I know. Of course it got worse. Then the PD misery began and I spent more and more time thinking about PD. The more I thought about it, the more I became defined by the disease. It was as if an unwelcome guest had taken residence in my body. 

Eventually I met other people with PD and became part of the Parkinson’s community. Meeting other people with the disease and becoming active in the PD community has been as beneficial to me as Sinemet. We have an in common shared experience. By taking part in the life of the community I stopped being a diagnosis and became a person again. We experience PD and suffer individually. The PD community helps alleviate some of the misery. Some days are okay and some are bad. That’s just the way it is but how we experience it its up to us. Can we just say that’s life. It is neither fair nor not fair. Life just is or isn’t. So enjoy it, experience it, live it as best you can while you can. Mental attitude is everything.

Parkinson's Is A Mental Disease.

The longer I live with it, the more I am convinced that Parkinson’s is a mental disease even though it is defined by a set of physical symptoms. PD can be caused by genetics, the environment, or a combination of genetics and the environment. It destroys dopamine producing cells in the brain which can cause four main physical symptoms and a host of “minor” ones but as time goes by the mental aspects of the disease become more important. All emotions, positive or negative, love and pleasure or disappointment and especially stress strongly affect my physical symptoms as well as how I feel. PD meds may also have a strong psychological affect on a person and can cause compulsive gambling, strong sexual urges, and binge shopping. Parkinson’s is a long term progressively debilitating disease that over time takes a great toll on the emotions and so PD becomes a fight for control of a persons mind and emotional well being.

Stress leads to a worsening of symptoms. The Michael J. Fox website states that, “Chronic stress will increase the extent of brain cell loss in PD-associated brain structures. There is ample evidence that PD symptoms worsen during times of stress.” Parkinson’s is a neurological disease and stress and strong emotions make neurological symptoms worse. Some PD people I know trace the onset of symptoms to a specific stressful event. I remember the incident where my symptoms first kicked in although I didn’t know at the time that it was PD.

I was waiting in line in a grocery store and someone cut in front of me. When I said something they became aggressive and I stupidly responded. After the incident my body began to shake and I’ve been shaking ever since. All strong emotions have a noticeable affect on my symptoms. Love and hate, both the same to Parkinson’s, they light up my brain and make me shake.

Then there are the possible negative psychological side effects of the PD meds and the lawsuits settled for millions of dollars. Add impulse-control disorders such as hyper sexuality, compulsive gambling, and impulse shopping that can be caused by the meds to the list of possible non-motor symptoms. No one wins the battle with the physical symptoms and so it is not surprising that many people with PD suffer with depression to some degree. In fact, depression is so prevalent in PD that doctors now believe that depression may actually be a symptom of PD possibly rooted in the way the disease affects the brain. 

I seem to be the best when I am active and engaged with people. At times I forget that I have PD and sometimes PD forgets it has me. Don’t hide and suffer alone. Get involved with the Parkinson’s community. Be with people. Being with people takes my mind off the disease. Gives me mental rest. Respite. We experience PD and suffer individually. Community helps alleviate some of the misery but PD really is a fight for the control of the mind and emotions. A healthy mind is the greatest asset in fighting the disease. I accept that I am probably going to lose the physical battle with PD even though I exercise every day but I am not giving up the fight for my mind and how I feel. Mental attitude is everything so don’t hesitate to get professional help if you need it.