Parkinson's Disease Tulip


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Old 12-09-2008, 07:07 PM #1
leonore leonore is offline
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leonore leonore is offline
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Default Creating Speaker Panels of Parkies to Inform Our Practitioners

hey-just wanted to share something I launched that could become a national effort. It's a speakers bureau consisting of health care practitioners with PD, or who are caregivers, dedicated to educating the health care practitioners who treat us about the lesser-known issues affecting us. My idea is a one-shot speaking presentations aimed at medical schools, and training programs in nursing, OT, PT, and physiatry. It was my doctor's idea about a year ago, to use PD patients to train doctors in a traveling speaking group, but he never got around to it, and loves that I got my own group going. He uses my PD poems to train his movement disorder residents, claiming that "they're more eloquent than textbooks."
On my roster of speakers so far, I have four social workers with PD signed up to be available, and a psychologist, and two social-worker caregivers. I'll be putting the word out that I'm looking for as many other PD folks in health care professions as are interested. I have quite a bit more outreach to do, but I'm taking this slowly, as I have the energy.

It really can be stretched to use as a model for other disease groups. I've entitled it, "Through Our Eyes: Patients Informing Our Practitioners" with the subtitle: "Health Care Practitioners with Parkinson's Informing Our Practioners About Lesser-Known Symptoms" and have already gotten a few speaking gigs. The first is speaking to the physical therapy students who are taught by the researchers running our PD-Exercise Class clinical trial. The second is a support group of Parkies and caregivers, run by Sherry Loftus, an awesome nurse whose career is dedicated to us, and there are some other possible speaking gigs that have been discussed with me.

Here's my announcement, which doubles as an info. hand-out (format looks claasier in original formatting!) :

Through Our Eyes: Health Care Professionals With Parkinson’s Informing Our Practitioners About Lesser-Known Symptoms

The HCPWP 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 a speakers’ panel comprised of diverse members of the health care professions who themselves live with the disease. 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.

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. The following list roughly outlines some, (but not all) of these above-mentioned symptoms and issues, and can be further and more personally fleshed out by panel members during a speaking engagement. All of the symptoms listed 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. 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. 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.
• The “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 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. 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.
• Bradykinesia: a stubborn slowness of our limbs, which attacks without warning, often minutes after we appear to be symptom-free.
• 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.
• 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 and singing programs are available to strengthen our vocal cord muscles, slow our speech down, and increase our volume.
• 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. 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 I see someone in Brooklyn who has done just that, greatly helping me with my own dyskinesias.
• Cognitive disruptions 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, concentration and attention, organizational skills, including prioritizing, and with decision-making. PWP’s can also develop symptoms that look like OCD, and some dopamine agonists have been implicated in causing addictive and compulsive behavior like gambling and sexual addiction.
While depression and anxiety can be treated by antidepressants, they can also often be lessened through use of the expressive arts. 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, work that 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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Old 12-09-2008, 07:35 PM #2
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Thumbs up Terrific!

Leonore

I think this is a great idea! I have no background in health care - and good luck to all involved!

Jean B
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Old 12-09-2008, 10:37 PM #3
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