"Through Our Eyes" PD Speakers Panel: Learning About PD from Patients


"Through Our Eyes" Speakers Bureau

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. We will attempt to help our listeners and their students to better understand the frustrating and extraordinarily mercurial motor and non-motor issues we face, 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 and students-in-training 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; 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") 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: 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.
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  • 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/Diminishment of Executive Functions caused by PD, can precede the onset of motor symptoms by as much as ten years. These 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. These addictive behaviors often disappear when the medication is stopped.

           Note: For PD-caused Depression and Anxiety, treatment with SSRI's (Lexapro, Celexa, etc) has            proven helpful to many, if provided by a physician knowledgable about PD. Effective                      treatment can also allow patients to retrieve the energy needed to exercise, and engage in the                  brain-stimulating, social relationships all necessary to slow PD down.

  • “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.
  • 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 Issues: These loss-of- balance problems can result in frequent falls and potential hospitalizations for us. 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 the sudden drops in blood pressure common to PWP’s. Using a U-Step walker can be safer than traditional 'Rollators' as they only roll when hand-levers are pressed, important when the symptom of lurching forward with presents a problem.
  • Bradykinesia: a stubborn slowness of our limbs, which attacks without warning, and often occurs 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 our speech down, and increase our volume. 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. Using the LSVT technique, LSVTGLOBAL.COM, can also increase volume, but is also somewhat expensive. Group lessons can lower cost.
  • 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 by 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. Amantadine has likewise been effective in reducing 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.
Complementary, Non-Medical Symptom Relief 

Use of Expressive Arts to Treat PD

While depression and anxiety can be treated by antidepressants, they can also often be lessened through use of the expressive arts, including such mediums as Dance, Music (singing, 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.

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