"Through Our Eyes": NY Parkinson's Speaker's Bureau; Presenting "PD's Lesser-Known Symptoms"

Through Our Eyes: Understanding Life With PD's Lesser-Known Symptoms

The New York Parkinson's Speakers’ Bureau has been designed with the goal of offering sensitivity and awareness training to health care professionals working with the Parkinson’s population, through making available a speakers’ panel comprised of diverse members of people actually living with PD who are either members of the health care professions themselves, and/or experienced patient advocates or public speakers. Nothing is more valuable than hearing about living with a disease from "the horses' mouth." Guest speakers will attempt to help our audience to better understand the frustrating and extraordinarily mercurial issues they face (both motor and non-motor symptoms); the uniqueness of each patient’s presentation of this disease; and the lesser-known cognitive challenges we struggle with.

During our presentation, we will each, on the panel, present brief glimpses of the manifestations of PD through the unique windows of our daily lives, including a question and answer period. We will offer verbal and written suggestions about how to address issues specific to this disease through more efficient patient interviews, Parkinson’s-specific questionnaires to use during patient visits, and interventions that incorporate a deeper understanding of our frailties, while reinforcing our strengths. We will also distribute a packet of poems written by those with PD, about their disease. These poems are already being used to train health care practitioners in this field. In so doing, we hope to be able to offer a distilled, insider’s glimpse of issues pertinent to our illness that would not be accessible through written materials or textbooks.

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

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 us. These symptoms need to be recognized in order to more effectively treat those of us with PD. Additionally, a short-hand lexicon is often used within the PD population; it is one which needs 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" right now) can be easily misconstrued by a health-care provider to mean, (as one PT student reported), 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 the lesser-known symptoms, issues, and lexicon of PWP‘s, and can be more extensively and personally fleshed out by panel members during a speaking engagement.
Note: Treatment can be tailored to be sensitive to these specific problems; for instance, if an
HCP is assisting PWP'S using weight machines or exercises involving repetition, keeping count of the repetitions for the PWP can compensate for the short-term memory losses, and the difficulties in staying focused, both Executive Functions often lost as PD arrives.

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. 

• Turning “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. One PWP poet describes it 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; 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. 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.

• Cognitive Disruptions, or a Diminishment of Executive Functions, can precede the onset of motor symptoms by as much as ten years. These symptoms often include depression, anxiety, and difficulty with the brain’s “executive functions.” 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 executive function problems can mimic ADD 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, it manifests as computer addiction. For depression and anxiety issues, many have been helped by beginning the use of SSRI's (Lexapro, Celexa, etc.) or other anti-depressants, after a consultation with a physician knowledgable about PD. 

• “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 PWP’s have the same emotions as anyone else. Exercises of the facial muscles can help this condition
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• 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 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, all of which can often be misperceived 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 the sudden drops in blood pressure common to PWP’s.

          Use of a U-Step walker can prove useful to those with severe balance problems (U-Step.com),             it only rolls forward when the hand-levers are pressed, thus averting falls potentially                             caused by leaning on a traditional walker with no brakes. This walker was designed for PWP's              in mind.

• Bradykinesia: a stubborn slowness of our limbs, which attacks without warning, often minutes after we appear to be symptom-free.

• Medication or Dosage Failures  Infections of any kind can disable medication 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 PWP’s 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 and singing programs are available to strengthen our vocal cord muscles, slow speech down, and increase our volume. Consciously singing out loud while at home is a good tool.Dry mouth from medication side-effects can also make speech difficult, and a daily use of a toothpaste, "Biotene," can be quite effective in reducing this problem. Taking voice lessons with an LSVT coach (LSVTGLOBAL.COM) has been helpful in increasing voice volume. A group class is a less expensive way to utilise LSVT.

• Dyskinesias: Involuntary jerking, twisting, or writhing movements in many of us who have been taking levadopa (synthetic dopamine) for more than five years. The causes are debated by researchers, some saying that dyskinesias are caused by an excess of levadopa, others implicate a drop in levadopa, and still others speculate a connection to the adrenal symptoms. Whatever the cause, they can be extremely disabling and uncomfortable. Clinical trials are underway to seek treatments for these dyskinesias. Namenda, a newer pharmaceutical quite effectively used for Alzheimers, seems to have a value for some of us in mitigating our exasperating dyskinesias. 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 someone in Brooklyn who has done just that, greatly helping me with my own dyskinesias.

Use of Expressive Arts to Treat PD

While depression and anxiety can be treated by antidepressants, symptoms can also often be lessened through use of the expressive arts, including such mediums as dance, playing a musical instrument, poetry-writing, 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.