Lesser Known Symptoms, and Lexicon, of Persons with Parkinson's Disease

    Leonore Gordon, LCSW

130 8th Avenue #3A

Brooklyn, NY 11215

leonore1234@aol.com

(718) 783 1986 
(347) 489 9123

Lesser-Known Symptoms, and Lexicon, of Persons with Parkinson's

 Most members of the general public, along with most health-care providers who do not specialize in movement disorders, are aware of the hand tremors and the slow, shuffling gait typical of the more advanced stages of PD, usually the most familiar characterizations of PWP’s (Persons with Parkinson’s.) Many, however, seem to be far less familiar with the wide array of other symptoms and issues common to patients with “Early-Onset Parkinson’s.” These symptoms need to be recognized in order to more effectively treat those of us with PD. Additionally, there is a short-handed lexicon often used within the PD population; one which can require translation in order to avoid confusion. The phrase, "I'm going 'off'" (ie. "My medication is wearing off and I'm about to be barely able to move") can be easily misconstrued by a health care provider to mean, (as one PT student told me), that the speaker may be "about to act crazy."  Likewise, "I'm frozen"  (ie. "I can't move at all) can be equally misinterpreted to mean, "Close the windows" or "Turn off the A/C." The following list roughly outlines some, (but not all) of these above-mentioned symptoms, issues, and commonly used terms. All of the symptoms listed below can appear intermittently throughout each day, vary widely with each person, and can be both preceded and followed by hours of the PWP appearing to be symptom-free.

* ”On’s” and “Off’s” ie. “Going Off” or “Freezing:” These are phrases used by most later-stage PWP’s to describe the phenomenon whereby we are suddenly switched “off” and lose the ability to walk, to step forward, to grasp a pencil, to speak clearly, to reach for a book, etc. I describe it in my poems as being “tagged” by a “Freeze-Tag Wizard.” This presents differently for each person, but is most likely related to a drop in the amount of levadopa in our blood levels. It is the most anguishing of experiences for most PWP’s, because when it occurs, we are rendered completely helpless, often after feeling fully functional. Although we know we will eventually return to fully functioning again, we simply never know when the next “tagging” will occur. “Rescue” interventions like Parcopa, (dissolvable Sinemet), or injections of Apomorphine can turn some of us “on” again. Always discuss these solutions with your neurologist.

Sometimes, but not always, taking a large step forward can “unfreeze” us for the moment, as can singing, or stepping over an imaginary line, or an ankle-high laser line of light provided by certain canes designed for PWP’s.

* “Parkinson’s Mask”: A commonly used metaphorical reference to the facial appearance of a later-stage PWP whose facial muscles have stiffened into what can be mistaken for a depressed or indifferent, impassive expression. This condition is always indeed “a mask,” because we PWP’s have the same emotions as anyone else. Exercises of the facial muscles can help this condition.

* Drowsiness or Insomnia, and Physical and Mental Fatigue: All of these can be caused by PD and by side effects from its medications, and can cause serious falls, or driving accidents. Tackling these problems can occur through use of prescription medications. Provigil is commonly used to keep us awake by day. For help with sleeping, Remeron works for others. Note: A movement disorder physician is best equipped to address and prescribe sleep medications. Sleep habits can also be improved through exercise, yoga, meditation, cognitive therapy, awareness of reduced caffeine in the afternoons and evenings, and avoiding nighttime computer addiction.

* Unpredictable balance inconsistencies: These can result in frequent falls and potential hospitalizations. PWP’s can be moving easily across a room, and moments later, be tipping or lurching forward, grabbing at walls, and misperceived (which often happens) as being inebriated. This can occur when medications are wearing off, or, conversely, just as they are kicking in. The practice of Asian martial arts such as “Tai Chi”, “Qi Gong”, as well as dance therapy, can be quite effective in addressing these PD issues. Falling can also be caused by sudden drops in blood pressure; a symptom common to PWP’s.

·*Bradykinesia: a stubborn slowness of our limbs, which attacks without warning, often minutes after we appear to be symptom-free, but usually means we’re low on our levodopa med’s. It can manifest on one side of the body initially, with one set of fingers slowed down and thus beginning to make mistakes in typing, or the affected side not being able to sustain a drumbeat, or, as is most common, one arm stops swinging as one walks across a room.

* Medication or Dosage Failures":  Stress, fatigue, or extreme heat or cold, or Infections of any kind can disable a PWP’s levadopa absorption. Something as benign as a sinus infection, a GI infection (especially H-Pylori), or a urinary tract infection, can turn a fairly high-functioning PWP into a severely disabled one, who can feel barely able to walk for hours each day. Diagnosis and treatment of infections is essential for both PWP’s and their practitioners to stay on top of. For some PWP's, their digestive systems don't consistently absorb levadopa, and Tasmar, which works through helping levadopa to be absorbed through the brain, can help enormously with this, but requires blood tests every two weeks for six months, due to very small risk of liver failure.

* Speech irregularities: PD causes many of us to have speech that is too soft, too rapid, or slurring, which we are not always aware of, and which can be irritating to our loved ones. Speech training, or joining a chorus or singing programs can be effective in strengthening our vocal cord muscles, and in slowing our speech down, and increasing our volume. Dry mouth from medication side-effects can also make speech difficult, and a daily use of a toothpaste, "Biotene," can be quite effectve in reducing this problem.

* Dyskinesias: Involuntary jerking, twisting, or writhing movements in many of us, which can be extremely disabling and uncomfortable, causing secondary problems, like pulled muscles. Clinical trials are underway to seek treatments for levodopa-caused dyskinesias. Namenda, a newer pharmaceutical quite effectively used for Alzheimers, seems to have a value for some of us in mitigating our exasperating dyskinesias, as is Amantadine. Extensive acupuncture treatments to the ears was discovered recently to be helpful, by a doctor in Germany. It can be adapted and modified by other acupuncturists in the US, and this writer sees an acupuncturist in Brooklyn who has done just that, greatly helping me with my own dyskinesias.

*Cognitive Disruptions and Executive Dysfunctions) which are caused by PD can precede the onset of motor symptoms by as much as ten years. Sometimes unfortunately mistaken for Alzheimers, these symptoms can often include depression, anxiety, and difficulty with the brain’s “Executive Functions.”  These executive function problems can mimic ADD (Attention Deficit Disorder) symptoms, causing great difficulty with short term memory retrieval, multi-tasking, transitioning from one activity to another, problems with concentration and attention, organizational skills, prioritizing, and decision-making. PWP’s can also develop symptoms that look like OCD (Obsessive-Compulsive Disorder), and some dopamine agonists have been implicated in causing addictive and compulsive behavior like gambling and sexual addiction. For many, the obsessive behaviors can manifest as computer addiction. Compensatory strategies used by adult with ADD can be used to address these problems.

All of these can be a source of great frustration for many PWP’s who previously did not have problems in these areas before symptom onset. Many have had to retire from careers requiring these skills, or have had to significantly adjust and modify their careers

These symptoms do not limit the intelligence or creative abilities of those with PD.

*Anxiety and Depression can be effectively treated by antidepressants, and anti-anxiety medications. Your movement-disorder neurologist should discuss use of these medications with you and any other physician prescribing these kinds of med’s.

These symptoms can also often be lessened through use of the expressive arts, including such mediums as dance, playing a musical instrument, writing poetry or prose, painting, singing, sculpture or photography. Recent brain research using fMRI brain scans suggest that improvisational creative activity stimulates parts of the brain involved with creativity, and some of us speculate that this might generate temporary rushes of a neurotransmitter that might, in effect, serve the purpose of self-medicating artists with PD.

There is an unexplained phenomenon of extraordinary bursts of creativity from those with Parkinson’s, resulting, at the 2006 World Parkinson’s Congress, in a discussion by Oliver Sacks on the topic, and a huge gallery of work by PWP’s, which can be accessed at the PDF.org website under the sidebar, “Living with Parkinson’s.”

For further information, please contact Leonore Gordon, LCSW, at leonore1234@aol.com, or by phone at (718) 783 1986, or (347) 489 9123.

My blog is at http://www.alphapdny.blogspot.com