A Parkinson's Good Day

I had a good day today. After a series of not so good days I had a good day. Not good enough to make me want to sing Good Day Sunshine but a day good enough to happily hum a soft song. I was a little shaky in the morning but not too bad. Made breakfast and did my usual. Nothing different from any other day and then sometime mid afternoon I realized that I wasn’t sharking. No tremors and I felt pretty good. Dare I say I felt normal. No shakes, no fatigue, no misery, good gait, decent balance. No Parkinson’s. I don’t know how it happened or came about. It kind of snuck on me without me realizing it. What’s wrong with me? I mean what’s right with me. 

I tried but couldn’t understand why I was having a good day just as I sometimes don’t know why I have bad days. I know that if I don’t sleep, or am stressed, or overexert myself I may have a bad day but sometimes it seems to just happen on its own. I know what to avoid but how do you make a good day happen? Does PD have a mind of its own? Comes and goes as it pleases with no discernible rhyme or reason.

I remembered what it meant to be a body at rest. A wonderful feeling and memory from the past. I was excited. Could it be that I no longer shook, my tremors gone, my body from now on at rest. After all I had Isaac Newton’s mighty first law of motion in my favor. A body at rest will remain at rest unless an outside force acts on it. Later that day my tremors returned without me knowing why. Is Parkinson’s more powerful than Newton? I thought my body would stay at rest but I forgot that Newton also stated that for every action there is always an equal and opposite reaction. The relief was welcome while it lasted.

Some definitions here. A good day is a day with only minor manageable symptoms. An okay day means medium manageable physical symptoms. A bad day is the full PD onslaught, strong physical symptoms and mental misery.

Most days are somewhere between good and really bad and sometimes I can influence how I think of them. I don’t think I can turn a really bad day into a good day but sometimes I can make it not so bad. So much of how a person feels is up to them. I don’t mean you can turn a miserable day into a great day but you may be able to make it a little less bad. Influence a not so good day into becoming a not too bad day. Take a bit of the edge off it. Positive thinking is a mental attitude in which you expect good and favorable results by creating beneficial thoughts that are transformed into reality. It’s a two step process: think positive thoughts and then make them affect your mood. A positive mind looks for the good in any situation. I admit, easy to say, harder to do.

I am not going to give you a tutorial on how to think positive thoughts and how to turn thought into reality. There are many don’t worry be happy self help positive thinking guides and gurus to choose from. Take your pick. The point is you are in charge of and can control your thoughts to some degree. Try to think positive thoughts. I say try because it is not as easy as just breath deeply and do it but your thoughts do come from you. Don’t just wait for a good day to happen on its own. Do what you can to improve your day and make it better. One way is to think of things that make you happy and expect to feel good. What would make me happy is a cure for Parkinson’s and if I can’t have that I will settle for having a good day.

Parkinson's And Fatigue

It’s taken me six years to realize that a major symptom of my Parkinson’s is fatigue. Not tiredness but fatigue. What is the difference between them? To me being tired is the result of activity or not enough sleep and can be alleviated by sleep and rest. Fatigue as opposed to tiredness is a recognized medical problem. It is the result of a physical or mental medical condition marked by feelings of lethargy and a lack of motivation and may even be present in people getting enough sleep. Fatigue has been described as an overwhelming sense of tiredness, a lack of energy, a feeling of exhaustion. It can be physical, mental, emotional, or all three and may lead to depression.

Several recent studies have highlighted the clinical significance of fatigue in Parkinson’s disease as a unique symptom not caused by or related to other symptoms. PD medications (Sinemet) don’t seem to combat fatigue and according to some studies may make it worse. One-third of all people with PD cite fatigue as their single most bothersome symptom, worse than the motor symptoms of tremor and rigidity, or problems with walking, freezing, balance and speech.

Fatigue can have a significant negative impact on quality of life and those experiencing it often describe it as being the worst, or amongst the worst, of their PD symptoms. People use the expression that they are bone tired but fatigue is deeper than bone. It is like being tired on a cellular level. Doing things may tire me but I get fatigued just thinking about doing them.

Researchers are now beginning to study the significance of fatigue in Parkinson’s disease due to its prevalence and impact on the lives of people with PD but little progress has been made in understanding its nature or cause nor in finding ways to manage the problem clinically. One possible reason for the slow pace of progress is the lack of an appropriate instrument to measure fatigue in Parkinson’s disease and related disorders.

Fatigue is physical but it can lead to apathy, not caring what happens, and depression which is mental. The slippery slope is that fatigue leads to lethargy, lethargy to apathy, and apathy to depression. Apathy is a lack of interest, enthusiasm, motivation, or concern. I am now completely without vanity. I no longer care how I look just as long as I am clean and have my clothes on semi correctly. 

You can fight Parkinson's disease apathy by exercising, trying to get regular sleep, taking short naps, and making sure you do not isolate yourself. Some people fight apathy by planning and doing small manageable tasks. Make sure you and your doctor agree on your drug regimen. The dishes still might not get done, but at least you will feel better.

There is a Fatigue Intensity Scale test on the web that I suggest you take. I would take it and tell you my score except I am too tired I mean fatigued to even think about taking the test and I’m tired, really tired, of having Parkinson’s.

Parkinson's And Freezing

Help, i’m stuck. My feet feel like they are glued to the floor and I can’t move. The ability to move smoothly and without thinking is the result of a complex interaction between the brain, the body, and ones environment. When healthy we take for granted the ability to get up, stand, walk, and sit without thinking. Parkinson’s alters brain circuit function that enables semi automatic movement. Hesitation to start walking is an initial symptom of freezing. Neuroscientists refer to this as “start hesitation” and ”gait initiation failure” which develops into “freezing gait”. Scientific jargon defines it as a “set switching” or a “visuo-motor response” motor control disorder that involves “amplitude generation” (inability to maintain effective speed of movement) and “rhythm generation” (a disordered timing of movement cycles). You can move again when this “motor block” is overcome. Enough terminology.

Short and to the point. Freezing is the temporary inability to move. It usually occurs in the feet but may happen in any part of the body including speech. No-one knows the cause. No-one knows the cure. All the rest is what to do when it happens. 

What triggers freezing and when does it happen? Freezing may happen when a PWP is having an “off” period and is due for their next medication dose. It most often happens when initiating movement and is triggered by activities that involve switching between motor actions like going through doorways, turning a corner, turning around in tight spaces, stepping over things, or going from one type of surface to another. Darkness (install night lights) and stress (the PD nemesis) can also trigger freezing. The thing to do is to be aware of the situations in which it is most likely to occur and try to relax through them. It will pass. Be aware that many of the same things that trigger freezing can also cause loss of balance.

What to do when you freeze. The most important thing is to not fight it. Try to relax. It will usually only last for a few seconds to a minute. Forcing frozen feet to move could lead to falling. Be careful, know what your triggers are. If your foot is frozen, try swinging your arms and then try your foot again. Try rolling your foot up starting with the toes then arch and heel until the foot comes off the ground. Try moving your foot in a different direction, to the side or back instead of forward. Lifting my leg straight up works for me. Rock, shift your body from side to side. Some people count to three. Some imagine stepping over a line. Humming a song and moving to the beat can help. DBS doesn’t help but researchers are looking for new DBS brain targets to prevent freezing. Again, don’t force it. Falling is worse than freezing for a few seconds.

As with all PD problems, tell your doctor. He may adjust your meds or refer you to a physical therapist for help. Feet get moving, don’t fail me now.

Parkinson's Zone Stages

It was a dark and stormy night, the blackest and longest of the year. An ill wind was blowing against me in the dark and I was feeling a little shaky, unsteady, off balance, and nervous as I began to travel along life’s Parkinson’s Highway in a 72 year old body that had suffered some wear and tear and seen some tough times but still had a lot of life in it although I had recently noticed uneasy hints and subtle signs that not everything was quite right. A ghostly cold full moon cast a dim light on the uncertain future that lay ahead of me.

Sheets of rain blackened the late night so I couldn’t see the dark and dreary road ahead. Intermittent lighting flashes briefly illuminated a lonely old crooked Gothic house set high on a hill which seemed to be held together only by the wisps of smoke and the thick fog that surrounded it. A weathered battered sign swung slowly from the gate. I could barely make out the name, Dr. Parkinson’s House of Medical Maladies, and under it a notice stating All Welcome, Be Careful, Watch Your Step and Balance. You Are On Shaky Ground, Tremors Ahead. 

The momentary lightning flashes afforded me only brief glimpses of the possible troubled future that awaited me as the door slowly swung open and a deep resonant voice bid me to enter, all were welcome. My body began to shake as I slowly understood that I had not found shelter from the storm but with fear and misgiving realized that I had entered the domain of the human brain and was about to discover what happens when its neurons no longer produce dopamine. I had entered the Parkinson’s Zone.

The doctor, a neurologist who specializes in disorders of the nervous system and brain, explained that there were five rooms which he referred to as stages and based on my observable physical symptoms he would assign me to one for as long as I needed it though I might progress through the others in time.

Room1, or stage 1, welcomes those new to PD and is marked by mild symptoms on only one side of the body which do not interfere with the activities of daily living. Tremors, changes in posture, and difficulty walking may be present.

Stage 2 is still considered as early PD. Tremors and rigidity get worse and affect both sides of the body. Problems with posture and walking may increase. Daily tasks become more difficult and take longer to accomplish but the PWP can still live alone and care for them self.

Stage 3 is considered mid-stage and all PD symptoms may be present. Tremors may have advanced to the full body. Loss of balance and slowness of movements are present and falls are common. The PWP is still fully independent but symptoms significantly impair activities such as walking, dressing and eating.

Stage 4 the PWP cannot live alone. Physical symptoms are severe and limiting. The PWP may be able to stand without assistance but will usually need a walker or cane to move around. Help is necessary to accomplish the activities of daily living.

Stage 5 is the full Parkinson’s misery. The most advanced and debilitating stage. The PWP cannot get out of bed or up from a chair without help. Stiffness of the legs may make it impossible to stand or walk. The person requires a wheelchair or is bedridden. Around the clock assistance is needed for all activities.

Upon finishing the tour the doctor said he would take me to my room. I said no thank you the rooms are "lovely, dark and deep, But I have promises to keep, And miles to go before I sleep." Life is short and time passes too quickly so I repeated "And miles to go before I sleep" and quickly left and continued on with my life. Don’t worry too much about what your stage is. Assigning a number doesn’t make it better or worse. You know how you feel.

Additional information. The above stages are based only on Parkinson’s observable physical motor symptoms. It does not take into account the non motor symptoms such as depression, anxiety, fatigue, dystonia, cognitive difficulties, etc. Symptoms are progressive and tend to develop faster the older you are. Each PWP is unique. Not everyone gets all symptoms and symptoms change at different rates, in different order, and in different variations with each person. It may take years to progress from one stage to the next, some people skip stages, and some never progress to stage 5. A good doctor will customize treatment for each stage.

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

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.