Showing posts with label Dyskinesia. Show all posts
Showing posts with label Dyskinesia. Show all posts

Tuesday, April 11, 2017

Shakey-speare: Parkinson's Awareness Month Meets Poetry Month

Long-time friends of this blog (both of them) are all too aware that April is both Parkinson's Disease Awareness Month and Poetry Month. I like to celebrate this cosmic coincidence by mashing up two things that go together like Brussels sprouts and ice cream, namely, PD and Poetry. How? Easy! By  penning, or, more accurately, keyboarding, a Pd poem. Still with me? Good. Here goes...

"I've never seen a Parkie Cow..." No that won't do... "A parkinsonian lad, name of Tucker, was one crazy, tough little ... " no, better not go there...  "Roses are red, Parkinson's shakey, when I'm dyskinetic, my movement is snakey..." no, no!..

OK, I think I got it...











Monday, September 12, 2016

Hillary's "Parkinson's Diagnosis" a Second Opinion

I wasn't going to get into the dogfight over the supposed "diagnosis" of Hillary Clinton as a sufferer of Parkinson's Disease. Why not? Because neither I nor anyone who is not a trained neurologist and hasn't performed a rigorous examination of the patient, is qualified to render a credible opinion. This didn't stop Florida anesthesiologist Ted Noel.

Dr. Noel posted a video to YouTube outlining his shoddy case for a PD diagnosis of Mrs. Clinton. This is where I got dragged into the matter. Noel quotes a post I wrote for the Northwest Parkinson's Disease Foundation as evidence for his opinion. (the quote appears at 3:22.) As noted above, I do not have the expertise to diagnose Parkinson's. But I didn't spend a quarter century newspapering without learning what bullshit looks like, and have no problem diagnosing that here.

Dr. Noel starts the video well enough, pointing out his lack of familiarity with Clinton's medical history and present condition by admitting that he is not her personal physician. Given that, he could not "claim that what I have to tell you is a conclusive diagnosis." He was right enough about that, and should have quit there. Instead he goes on to cherry-pick symptoms to make his case, contradict biology on Parkinson's side effects and speculates about what he is clearly ignorant of.

Below is a list of symptoms of Parkinson's disease. As you can see, it's quite long. There are plenty of symptoms if you want to cherry-pick among them to support your thesis. What's more, Parkinson's patients usually present some but not all of these symptoms. An example of how slippery PD is to pin down: some PD patients do not even have the hallmark symptom of tremor. Can you begin to see how complicated and difficult it is to diagnose this disease? I've read of studies that showed a third of diagnoses made by neurologists without specialized movement disorder training are mistaken.

There are no studies of how well anesthesiologists like Dr. Noel do at diagnosing PD, because it's so obviously a bad idea.

Here is the edited list of symptoms  from the Parkinson's Disease Foundation's Web site.
  • Resting Tremor: In the early stages of the disease, about 70 percent of people experience a slight tremor in the hand or foot on one side of the body, or less commonly in the jaw or face.
  • Bradykinesia:  means “slow movement.” A defining feature of Parkinson’s, bradykinesia also describes a general reduction of spontaneous movement, which can give the appearance of abnormal stillness and a decrease in facial expression. The reduction in movement and the limited range of movement caused by bradykinesia can affect a person’s speech, which may become quieter and less distinct as Parkinson’s progresses.
  • Rigidity: causes stiffness and inflexibility of the limbs, neck and trunk.
  • Postural Instability: One of the most important signs of Parkinson’s, a tendency to be unstable when standing upright.
  • Freezing: Freezing of gait is an important sign of PD that is not explained by rigidity or bradykinesia . People who experience freezing will normally hesitate before stepping forward. They feel as if their feet are glued to the floor. For reasons unknown, freezing rarely happens on stairs.
  • Micrographia: This term is the name for a shrinkage in handwriting that progresses the more a person with Parkinson’s writes. This occurs as a result of bradykinesia, which causes difficulty with repetitive actions.
  • Mask-like Expression: This term means a person’s face may appear less expressive than usual.
  • Unwanted Accelerations: Some people with Parkinson’s experience movements that are too quick. These unwanted accelerations are especially troublesome in speech and movement. People with excessively fast speech, tachyphemia, produce a rapid stammering that is hard to understand. Those who experience festination, an uncontrollable acceleration in gait, may be at increased risk for falls.

  • Other symptoms
Stooped posture, a tendency to lean forward
Dystonia
Impaired fine motor dexterity and motor coordination
Impaired gross motor coordination
Poverty of movement (decreased arm swing)
Akathesia: agitation
Speech problems, such as softness of voice or slurred speech caused by lack of muscle control
Difficulty swallowing
Sexual dysfunction
Cramping
Drooling and excess saliva resulting from reduced swallowing movements
Sleep disturbances
Constipation
Bladder problems
Sexual problems
Excessive saliva
Weight loss or gain
Vision and dental problems
Fatigue and loss of energy
Depression
Fear and anxiety
Skin problems
Cognitive issues, such as memory difficulties, slowed thinking, confusion and in some cases, dementia
Medication side effects, such as impulsive behaviors
Let's look at Dr. Noel's analysis of Clinton's symptoms. His claim that she suffers a parkinsonian head tremor is underwhelming. The tape he cites as evidence of head tremor (at 5:47 of the video) is more rationally explained as body language that says "Go on, I'm listening." It bears little resemblance to a PD tremor, it's way too slow. A pd tremor occurs at five times per second, according to Johns Hopkins Medical school.

Likewise his treatment of "freezing" episodes rings false. He focuses on an incident where Clinton trips on a staircase, (5:15 in his video) saying this is an example of a Parkinson's "brain freeze."* In fact, most of us who have PD notice stairs are mysteriously easy to climb. Before my brain surgery I often would make painfully slow progress across an open expanse of flooring, punctuated by periods during which I would come to a complete halt only to bound up the stairs when I finally reached them. As the Parkinson's Disease Foundation notes "For reasons unknown, freezing rarely happens on stairs."

You can judge for yourself  Dr. Noel's wacky analysis of Mrs. Clinton's "hand posture". (6:51) Clinton is behaving quite normally in the tape he cites as evidence of brain dysfunction. The only posturing here is Dr. Noel pretending to know what he's talking about. 

One thing that is known by everyone with PD but not Dr. Noel is that freezing and dyskinesia don't happen at the same time. You freeze when you are low on dopamine. You have dyskinesia, excessive uncontrollable motion, when you have too much dopamine on board for your brain to handle. Dr Noel explains head movements by Clinton that he finds odd (around 8:56) as dyskinesia set off by a freeze. But how can a person suffer from too much dopamine and too little at the same time?  It's never happened to me.

The nonsense flows through the rest of the tape. Dr. Noel flies by the seat of his pants through unfamiliar territory, dispensing misinformation. For instance, he says Clinton's use of the term short-circuit is odd. "The term short-circuit is not in slang usage." he claims.

Short-circuit there.

His gibberish and speculation leave no room for credibility.

One thing is clear to me after reviewing this sorry mess. I wouldn't let this guy treat my dog, let alone my Parkinson's Disease. **     

*Incidentally in 14 years with diagnosed PD, I can't remember anyone refer to freezing episodes as a "brain freeze" Everyone knows that term describes an ice cream headache.

**Further debunking of this matter can be found at this link to Snopes.

Friday, November 20, 2015

Fine-Tune Your Meds and Dosages With This Handy Chart

First, this CYA notice: please confer with your doctor before adjusting your meds. You'll be glad you did.

Most of us (but by no means all) adapt well to levedopa or other medications  in the earlier stages after diagnosis. Then as time passes we find that we must fine-tune our timing to avoid motor fluctuations (off and on periods, dyskinesia, etc.) Graphing our dosages and timing is a good way to keep track. So I have drawn up a chart to make things easier. You're welcome. There is a pdf of the blank chart here for your downloading pleasure. When you download and print the chart, it should look like this
Here is how to use it. Starting with the bottom line fill in and number all your medications, not just your PD meds. Your chart will look something close to the one below...
























If you need more space to add medications, I suggest putting them in above the existing blanks I have provided. Note that I have added the strength of each medication as well as the medication's name to make it easier for your doctor to interpret results when you confer with them (See CYA notice above.) Once you have the medication blanks filled in, you are ready to get graphing! But you'll be best off if you start with your morning cycle, so if it's not time for the first dose of the day, you should start tomorrow. I have found that to keep my meds straight it works best for to start my medication cycle at the same time each day. This eliminates one variable, and the fewer the variables, the easier it is to see what is happening. A pill timer is a big help, or set up a schedule of dosage alarms on your smart phone's clock app. Let's say your cycle starts every day at 7:00 am.  Your first entry will look  something like the chart below...

List your meds by number as you take them throughout the day. As the day goes by, also track your motor state ranging up and down from "off", (difficulty in moving and lots of tremor) through acceptable, (Approximating normal life) up to excessive motion with uncontrolled dyskinesia. Whenever you notice your state changing, note it down with a fever line on the graph. (The wavy line shown here in gray) By the end of the day, it will look something like this...

In the In the above example the person takes medications 1,2,3, and 4 first thing in the morning,and then every two hours, takes medication one.

Below is another example of how the chart may look

 So what is going on? That's for you and your doctor to figure out (see CYA notice at the top of this post.) But just for grins, let's look at these last two charts above again. In the next-to-last chart we find the patient spends much of the day with too much unwanted motion suggesting the levedopa (Stalevo, in this case) dosage could be spaced out in time more, In the last chart, we see rather frequent periods whered the patient seems undermedicated, suggesting a boost in dosage frequency or strength

A final thought or two. First, Don't rely on just one day of data. Lots of things can interfere with getting good results, tiredness, what you ate and when, exercise, and my favorite, getting so caught up in graphing that you forget to take your stupid pill. Try for a couple of weeks. Some clear  patterns should emerge. 

Second, the medications and their effects are not perfect, Even with the wonderful ability of the brain to gauge and compensate for error and imperfections in our tools and protocols for handling the problems that arise the state of the art is not equal to the job of restoring perfection. We can only approximate normal for a percentage of the day. This depends on variables like disease progression and severity, If you are faithful about keeping track of your doses and responses, this should be a helpful tool for you and your doctor in fine-tuning your medication regime to get the best results possible, in this best of all possible worlds. (See CYA notice at the top of the post)

 







Monday, April 20, 2009

Dysko Boy, or, Body English is My Second Language


Oh man! I just had an unexpected encounter with reality. I got a note about a week ago from my friend Pat that video of my talk to his journalism students is available on the Web. My present motto is "No Fear," so I pulled it up.

The video loaded, and suddenly there was this guy on the screen writhing around and jabbering at light speed. A herky-jerky whirligig who was disco dancing while a colony of fire ants made its way up his pants. That whirligig was me! Those were my pants full of fire ants! I was amazed.

It was like seeing me play either end of the table against myself in some white-hot, solo ping pong match. Or maybe conducting the Amphetamine Philharmonic Orchestra in a 30 minute rendition of Wagner's entire Ring cycle. Or a bowler putting the entire Oxford Dictionary of Body English on a ball in the time it takes it to roll to the far end of the lane.

It was tiring just to watch. Fortunately the image is about the size of a match book. Anything larger would be an aerobic workout for the eyeballs that would leave the viewer panting and soaked with sweat in their chair.

One of the reasons I was so struck by the sight was that I had no clue I was this consumed with excess motion (called "dyskinesia" by the cognoscenti.) It's not caused directly by the disease, but instead by the brain's inability to process the amount of medication that I must take to avoid extended times when I can barely move.

It's a trade-off: Better to have extra movement than not enough. But it does require great concentration when trying to make a line go where you want it to go in a drawing. Often I spend as much time Dysko Dancing while attempting to draw as I do actually drawing.

But really! I had no idea I was as hyper as I appear on the video.

All I can say is it looks much more dramatic from outside. At least that's all I can say in written English. In Body English, you can't shut me up until the meds wear off.

(And, oh, all right. If you must, you can view it here.)