Parkinson's is such a Weird Disease

Something that people unfamiliar with Parkinson's might not know is that the symptoms are constantly changing. I don't mean from one day to the next, I am talking about from one hour to the next. Most patients, especially those who have young onset (younger than 60) version. Often, the changes from one symptom to the next happen so quickly that an observer might think that it is faked. If only! My days usually revolve around several different symptoms, with a bit of "on" time most days, when I get a bit of a break from pain and disability.

The crazy thing about "on" time is that my obsessive/compulsive nature kicks in then. I try to do a little bit of housework, but soon find myself scrubbing baseboards with a toothbrush. Or I will start to organize stuff. My family hates that, because I will either rearrange the kitchen cupboards, and then forget where I put stuff; or I will sort though stuff (a task requiring the dumping of said stuff) and then when I have it all spread out somewhere, my "on" state suddenly vanishes, and I can't finish the task. I usually end up either leaving it spread out, or I scoop it all up so that next time will be even more challenging.

Once my "on" time is gone, I go into some sort of "homing" state, and I get obsessed with needing to get to my bed. This drives Derek nuts! If we are somewhere other than home, I need to get home. If I am home but in another room, I have to get to the bedroom.

One of the most painful of my symptoms is dystonia.

This is a video I recorded myself of attempting to walk with one foot cramped from dystonia. I never know how long dystonia will last, or how many body parts will be affected. When my whole body is affected, I twist up like a pretzel. It could last ten minutes, or several hours. As I say in the video, I have cracked bones in my foot by trying to walk with dystonia.

Another symptom that I have frequently is bradykinesia. This is a stiffness that makes any movement very difficult. It feels like I am encased in wet cement, including my brain.

Most people associate Parkinson's with dyskinesia: the involuntary swaying movements that Michael J. Fox made famous. I also get dyskinesia almost everyday. What many people don't know is that dyskinesia is actually a side effect of levodopa, which is the main medication prescribed for Parkinson's. Figuring out the dosage is a balancing act that most of us never master, because it is always changing.

Parkinson's is a fascinating disease to study, even when studying it from the inside.

But you look so healthy!

The vast majority of my friends, acquaintances, and family members (besides the ones who live with me), have never seen me during a dystonic event or severe dyskinesia. It is hard for them to comprehend how many hours a day I am severely disabled. Even most of my doctors have never seen me at my worst.

The medical jargon for the stage of Parkinson's disease I have been in for the past ten years or so is "off and on". When my friends see me at church or out of the house for some reason (usually a doctor's appointment), they often say something like,"You are looking good," They kindly don't mention the 100 plus pounds that I have gained as a result of immobility and injury.

My hubby and kids think it total vanity that it takes at least an hour and a half for me to get ready to leave the house. I confess that I use way more make-up than I used to. I have always loved eye-make up but rarely used foundation, blush, or powder, I was fortunate to inherit my grandma's porcelain smooth skin. don't know whether my  splotchy skin is the result of the weight gain or a symptom of the disease, or if it is just normal aging. My grandma's skin still looked beautiful when she was in her 80's. It takes me a lot longer to do my make-up than it used to. This is partly because I am trying to cover up the splotchy skin, and partly because putting on eye liner and mascara is a hit and miss endeavor, and I often have to clean up the results of my tremors or dyskinesias. 

I am often asked if I am having a good day. While some days have more good hours, I don't live one day at a time. I live one hour at a time. The transformations from one symptom to the next usually happen very quickly, They can be very unpredictable, but I often have a window of "on" time sometime between 11:00 am and 2:00 pm, I consider this a godsend, since it means that I can attend church, if I have arranged a ride and I have enough on time before church to get myself ready.

I don't share this information to invite you to my pity party or to get attention. Parkinson's disease is actually quite fascinating and most people don't know very much about the disease, especially the young adult onset version of the disease. Most people have seen grandparents or parents living with the constant tremors and freezing incidents so common in elderly PD patients. When they see someone like me walking without a limp one minute and then suddenly fall down and not be able to get up, they might think I am faking it.

Remember the news feeding frenzy when Rush Limbaugh called Michael J.Fox a charlatan and made a mockery of Parkinson symptoms? This was in 2006 and I had just been diagnosed. I remember being furious at the ignorance, not only of Limbaugh, but of about 80% of the social media comments that followed.

Unfortunately, Michael J. Fox is still having to face idiots in social media. This You Tube video by someone calling himself David J. plays footage of Michael skating. I understand this perfectly - it has to do with the nature of brain injury common with young adult onset. There are some activities that, if you were good at them before PD and you enjoyed them, your brain might be able to compensate and allow you to do these activities during your "on" time. For me, I love to dance, and I was thrilled to discover a few years ago that I can have moments when I can dance well enough to be an embarrassment to my kids.What more could I want from life?!!!

DBS - End of the Saga

DBS (Deep Brain Stimulation) has had an almost miraculous effect on many people with Parkinson's disease. I am not one of them.

I had a DBS unit surgically implanted April, 2008. It was an ordeal not for the faint of heart. The surgery was done in two stages. First, the wires were buried in the subthalamic nucleus (STN) deep down into my brain stem through two dime sized holes in the top of my skull.with the wires tunneled across my head, behind my left ear.This was an eleven hour surgery for which I had to be awake so that I could tell the doctors which part of the body was tingling with electrical current. They also had to examine my eyes every now and again, which would be rather difficult if I were asleep.

One week after the first surgery, I was back for part two: the battery implant. There is no room in the brain for this gizmo,so the battery needs to be implanted in the chest. I got one of the old style batteries that would need to be replaced surgically when it runs low.. I was told that it might last for two years. Nine years later it was hardly used.

The goal of DBS surgery for me was to even out my daily on/off cycle. I had high hopes for a good outcome. Turned out to have the opposite effect on me. My dystonia (the excruciating muscle cramps and human pretzel syndrome) got worse, the dyskinesia (involuntary dancing), and the bradykinesia (where every movement feels like trying to walk through a cloud of gelatin. Renee -my first programmer - called it 'wonky'.) all got worse and lasted longer. Fortunately my 'on' hours also improved. When I was on, I felt almost normal. A lot of people only ever saw me in this state, because I tried to plan my day around my on times. Even my family doctor rarely saw me in the other stages. I brought my laptop to an appointment once and showed him video of the other stages. He was quite surprised, especially that I was cycling through all of these states every day.

Nine years ago, I threatened Renee that if the DBS made me worse instead of better I was going to move in with her. Her husband was the surgeon who put the damn thing in my head. Unfortunately, they have both retired now. I met them at a Parkinsons convention a couple of years ago. I told Renee that I had turned my DBS off, and she was rather horrified. She asked if Steve (her replacement) knew about this. I have been too afraid to ask if she confronted him to ask why he would let me turn it off.

While writing this update, I noticed that my 5th chapter of the saga for some reason had never been posted on this  blog, so I just added it and it may be out of order. Here is the missing link.

The DBS has never made a significant improvement in my Parkinson's symptoms . About three years ago I was filling my pill trays for the week, and my hands were shaking so much that it was difficult to pick up the pills. Turning my DBS up and down made no difference, so I tried turning it off (something Renee had told me to never do!) and the tremors stopped immediately. When I turned it back on  -- and the tremors came back. I tried turning it on and off a few more times,with the same results each time.

Since then, I have kept the unit turned off except to experiment now and then to see if it would do any good for extreme symptoms and for on times to see if they would last longer. It didn't seem to make any difference.

So now I decided it was time to call it quits. Last week I had the battery removed. Nine years ago, the battery implant surgery was a difficult ordeal, especially for the first week after the surgery. I was hoping that the surgery to have it removed would\be easier to recover from. No such luck. I have not been sleeping well, so all day I have been falling asleep and having extreme symptoms that are lasting for hours.

The surgeon left the leads in my brain and the wires tunneled down to my chest. He secured the ends in the chest cavity in case I ever want it hooked back up again. Now I am feeling the wire tubes moving around. I wonder if I made the right decision.

Today was not a good day

Living with Parkinson's disease is never boring! That is the only predictable part of my life. It is never the same disease from one day to the next, or even one hour to the next.

Today was not a good day. I had a severe bout of dystonia - muscle cramps, twisted torso, hands and feet curled inward. It lasted about three hours in the morning. Fortunately my wonderfully handsome and handy hubby made me breakfast in bed before he left for work. He also had to make supper because I also had a nasty bout of bradykinesia - inability to move - that started around 4:00 and lasted until around 8:30. I don't think I had any "on" time today. Most days I get at least an hour of almost pain free existence. Not today.

The Ups and Downs of On and Off

The Honeymoon stage is over and I am now in the stage of Parkinson's that is called "On and Off" - I know, the technical terms are tough to keep up with. On and Off means that my medications don't work smoothly any more, so everyday I ride a roller coaster of symptoms, usually with a few hours of "on" time where I am almost pain and symptom free.


In the morning, I go through a dystonic stage. This means that my muscles and tendons cramp up - my fingers and toes curl up, my feet turn inward so that it is impossible for me to walk (I used to try to walk, until I broke a bone in my foot), and my whole torso and my neck get twisted. This human pretzel routine can last anywhere from a few minutes to several hours. It is more painful than giving birth without medication, and I know because I did that twice. This is worse.


The thing that keeps me going is knowing that it will end. If I had to experience that kind of pain all day I would be begging my doctor to put me out of my misery. After the dystonia wears off, I get my good hours. Even then, I have to be careful to not overdo it, or the next stage will start too soon. Yesterday and today I had the extremely embarrassing problem of not being able to get to the bathroom on time. Fortunately, I just have to wait a couple of hours,, and then I can clean up after myself. I'm not looking forward to the days when I will have to rely on my daughters or a nurse or home care worker or someone to take care of me.


In the evening, I usually go through a phase that is difficult to explain. I can't stop moving, which is called dyskinesia, but I am too exhausted to do anything. It's emotionally draining, although the pain is not quite as intense as dystonia. Usually the pain gets worse as the evening goes on. With medication, I am able to fall asleep, and then it starts all over again.


I am not saying this to complain about my life, and I don't think that I deserve any praise just because I have a nasty disease and I am still alive. This is just my life right now. It is what it is.