Parkinson's On Off Syndrome

I used to have wonderful control over my body. I would tell it what to do and it would do it. Get up, make the bed, have breakfast, take a shower, clean the house, go shopping, enjoy time with friends, play ball, dance, all enjoyable and no problem. I thought I would always be healthy and just mellow down easy into a gentle old age. Parkinson’s changed that. Now PD controls my body. It says shake and I shake. It says fall back into the chair or bed and although I don’t want to I am down. I was also foolish enough to think there were only four major PD symptoms to worry about. I am six years into it now and new symptoms just keep coming. It took Pharaoh ten days and ten plagues to get the message. It would have taken less than ten seconds if God had afflicted Pharaoh with the host of Parkinson’s symptoms. He would have been shouting ENOUGH get the Israelites out of here now, pack them up, move them out, and don’t try to stop them at the Red Sea. 

Whatever symptom I have at the moment is major. They are all punishing. Two new ones are afflicting me now. On-off and freezing are the newest indignities and another way PD is taking over and taking the me out of me. I am not who I was before PD and am worried about the future me I am becoming.

On-off is a consequence of taking levodopa for a number of years. Most PWP who take a

levodopa based medication will experience on-off in time. On-off refers to alternating periods of good control (on) and poor control (off) of symptoms. Changes in symptoms are usually due to the medication (l-dopa) wearing off but fluctuations may be unpredictable and have no relationship to medication timing. On-off comes in four flavors: on, off, wearing off, and delayed on.

On-time is the feeling good time when the levodopa medication is working and controlling the PD symptoms. Off-time is when the levodopa medication is no longer working well and PD symptoms such as tremor, slowness of movement, and stiffness have returned. Some people say when you are off is how you would feel if you didn’t take meds. Others believe what you feel is a result of coming down from the meds. Others say it is a little of both and just good old PD.

Wearing off is when PWP start to feel that the improvement gained by taking their meds is gradually fading before the next scheduled dose is due. You feel like a battery that is running out of juice. Delayed on is when it is taking longer for your meds to kick in. This is more likely to happen with time release meds because there is an increased delay until enough reaches the brain so the positive effects are felt. 

Possible ways to regulate on-off are to take smaller more frequent doses of levodopa or to take larger less frequent doses. Another way is to take time release levodopa as well as your prescribed dose but these remedies don’t work for everyone. There are also new drugs that combat off cycles. One (a pill Xadago) blocks the enzyme that breaks down L-Dopa, another (an injection Apokyn) increases the level and function of dopamine. Both must be taken with a levodopa based drug. 

Levodopa, has helped many PWP live a decent life but can cause side effects. Be aware of them and don’t hesitate to talk to your doctor about problems you experience.

Parkinson's Shrinks The World

My world started to shrink when I got PD. Is Parkinson’s the cause of my world getting smaller, is aging responsible, or am I just slowly but steadily and increasingly losing interest in the world around me? I realize that I am not aging in the best possible way. I should be more active and maintaining social, emotional, and intellectual contact with the people and world around me despite PD. It’s not that I particularly want to or am trying to withdraw. It seems more like a gradual natural disengagement where I just don’t particularly care about or want to interact with the world and events. Is it natural and acceptable to withdraw from society as I age or is PD preventing me from living a full life?

I sold my lovely car and gave up driving even though my driving is still good. I promised my kids I would stop driving if they told me I was not driving safely. They say I am still a good driver. I know my reflexes have slowed a little and I really liked that car. So why did I give it up? Was it because I thought I was getting too old or because I live in a transportation friendly city and don’t really need the car or because I just am tired of the hassles of ownership or is it because I have Parkinson’s and am slowly doing less and less. Days, world events, life seems to pass before me like a movie that I am neither part of nor taking an interest in. 

My comfort zone has shrunk and I don’t want to leave it. I no longer travel and don't want to. No trips to new places. I want to sleep in my own bed and can best handle PD in my house. Anything else is tricky. Visitors make me nervous for days before they come although I often feel the best and sometimes forget that I have PD when I am with people. Is my world view shrinking due to PD? Am I turning inward and concentrating more on every move I make as it gets harder and harder to move. Where did my youth go now that I am old and need it?

These are some of the things I’ve stopped doing or now do less of. You already know that I sold my car and don’t understand why. I was driving less but still found it useful to have. It’s as if I just stopped caring about whether I had a car or not. I moved into a smaller house, a condo half the size of my long time single family home that also had a front and back yard. Less maintenance, less storage, less space. I almost completely gave up cooking even though I still enjoy food and like to eat. Minimal preparation, no recipes. The simplest meals. Pan the meat, nuke the potato. The microwave is my friend. I stopped working and although I love retirement my days are less busy and I’m not as active as I was. I disconnect from my surroundings and appreciate solitude more and more. I stopped learning how to use new technologies. I used to stand tall and straight but am shrinking, growing physically smaller as I slowly contract into Parkinson’s traditional question mark posture. What is the meaning of this, what to make of it? 

Has anything increased in importance, gotten bigger, become more meaningful? I am happiest when I am with family and friends. They help me get out of myself and enlarge my world. The PD community is great for sharing experience, understanding, compassion and information. Humor and laughter lighten the load, reading and old black and white movies are relaxing, and listening to the rain is peaceful.

What is in store for me as my world becomes circumscribed and continues to shrink? What will my life be like as I become less connected and possibly lose my independence? Do people fade away as they age or is it life that fades away? Will my world continue to shrink until I disappear or can I age well and maintain the ability to function physically, intellectually, emotionally, socially, and spiritually despite my medical condition? No answers in this post. Just thoughts and questions. Getting rid of the car hurt. i sold it to may ex. She quickly dented the left fender, then the right, and then within six months got in an accident that completely totaled the car. It deserved better. I miss it and want it back.

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