Parkinson's Birthday 2018

I know, I know I posted this last year for my birthday but another year passed and another birthday is here. My Parkinson’s progressed this year so I added a short update. Maybe I will update and post this each year on my birthday as a way taking stock.

And so it’s my birthday. Happy birthday to me. Another year older and I’ve lived another year with Parkinson’s. At first I thought I could handle it but sometimes it has its way with me and developed a little faster than I would have liked. At those times I don’t have Parkinson’s, it has me. So I shake a little more and I’m having some problems with balance. It could be worse. Happy three quarters of a century plus two to me. 

Parkinson’s is my new normal. To see me is to know I have PD. In 20118 my symptoms (tremor and balance) became noticeably worse. It is harder to accomplish simple daily tasks (bathing, dressing, cooking, cleaning) and some days are pure misery. My comfort zone and world are shrinking. I don’’t want to travel and hesitate to take even short day trips. I am less comfortable being with people who don’t have PD and more at ease with people who do. I stopped caring how I look as long as I am clean and have my clothes on more or less right. I have given up trying to still be who I was and am instead trying to understand what I have become. And yet, somehow I am okay. I am doing the daily necessary and enjoy interacting with people and being alive.  

PD is seen as a physical disease, defined as a movement disorder, but it really is a fight for the control of the mind and emotions. A healthy mind is the greatest asset in fighting the disease. It helps me accept the reality of what is, neither making more of the disease nor less. I will probably lose the physical battle with PD even though I exercise every day but I am not giving up the fight for my mind and emotional well being.

I don’t know if I should credit PD or thank aging or both or neither but I now care less about what others think of me. Anger, bitterness, and resentment about things that happened to me in the past is gone but I don’t think I will ever get over the harm I’ve caused others, the wrongs I did to people. Most of my failures and missed opportunities no longer matter. It no longer gnaws at me and there is no one to blame. I am mellowing as I age and don’t worry about what I don’t have. I’m more thankful for what I do have. I accept the reality of what is, neither sugarcoating what is nor wanting what isn’t.

I am at a delicate balance point, thinking equally about the past and considering my future. Life changes in an instant. So many people here one day and now gone. Appreciate what you have while you still have it. Don’t take anything for granted. I no longer rush through things trying to get to next. I relax more into the now of what I am doing. I have no idea how much time I have left so I have no intention of rushing through it.

Life is what happens when you are with other people. Thank you to my family. You are what I care about most in life. Thank you to friends. We had wonderful times and you made life more interesting and enjoyable. Thank you to those I loved and those who loved me. You made life special. I still see of each of you in the glow of the unique light that love bathes a person in.

The sense of me being old seems odd to my children just as it does to me. I know they are troubled by how they see me: Parkinson’s, doctors, meds, slightly stooped, head hanging down, wobbles when walks. What happened to their father the now diminished giant who had once been so important in their lives? Where did the moment of his greatness go? Healthy and vibrant, then like a switch thrown in the dark of night so you can’t see what’s coming you find yourself on the other side suddenly old. Life changes in an instant and the world continues without us.

Let’s sing the song. Happy birthday to you. All things must pass. Happy birthday to you. All things must pass someday. Happy birthday dear Peter. The future becomes the present and slowly but too quickly fades into the past. Happy birthday to you. Time doesn’t pass, People pass and in time become only a memory. So make a wish and blow all the candles out and maybe, just maybe, your wish will come true.

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.