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Don Hitko, Facilitator of the Greater Lansing Area Parkinson's Support Group, is a very positive individual who is an inspiration to many. He has been creatively working to "make sense" out of Parkinson's disease from a person with PD and family point of view. This article is intended to persuade others to look beyond the obvious when you are with someone who has....THE PARKINSON MASK

(Permission to reproduce by author)

In this age of computers, any subject of choice usually can get more than enough coverage. This is a blessing for those of us who have Parkinson's disease. As we prompt and poke at our computers, an avalanche of descriptions, advice, reports, treatment trends, testimony, and inspirational offerings becomes available. Never in short supply are accounts of courage, sacrifice, and determination as we attempt to cope with our disorder.

As we access the multitude of resources for our information, a realization can form from the sense that with all this knowledge, inspiration, and support that we are fondling, something is still not on target. What seems to be beckoning is the need for expression of the turmoil that churns in our bodies, minds, and souls. Knowing is not enough! We can feel from one moment to the next that we are trapped in a body and mind that is becoming increasing hard to manage. This moment to moment awareness is fueled by a blunt sense of isolation and alienation.

Contributing to this dilemma is the unfortunate way that Parkinson's sculptures our minds and bodies. It is how this chronic ailment affects our inner and outer selves as we try to interact with our families, friends, any other good folk. This has its beginning with the conditioning we all have to each other's body language, and to the abilities needed to connect and communicate.

The person with Parkinson's disease doesn't project an approachable persona. The loss of some of the control of the face and head muscles creates a stare-like feature that is referred to as the "Parkinson Mask." The eyes don't blink as much; the smile, if there is one, appears forced or is of a short duration. The stiff neck and shoulders remind us of Frankenstein. There may be uncontrolled movements that vary from excessive to a Zombie-like absence. The hunched back is a reminder ofthe bell ringer from Notre Dame. There can be a funny gait, drooling, an unkempt appearance, and - heaven forbid - a body odor! This all adds up to an approachability that is uncomfortable, if not repelling.

If contact is eventually made, further dissonance is encountered. The voice of a Parkinson Person is often raspy and lacks volume that is not perceived by its owner. Any exchange of conversation is followed by a request to repeat what he has just spoken. Sometimes, no attempt to hear is resorted to. As the Parkinson one speaks, there is a tendency to run the words together, especially in a telephone conversation.

If a request is made to help communication by writing down the message or idea, then another Parkinson hardship is on tap: the lack of coordination causes handwriting that is barely legible.

Difficulty with memory is another burden a PD person can experience. The slow responses, the mixed up details, further make the situation uneasy.

Low libido due to the disease or the medicine taken, puts into hibernation the masculine and feminine interplay that can add radiance to any interaction. Balance problems plus muscle weakness and stiffness result in a reluctance to move about, which leads to judgments that you want to be left alone.

Parkinson People are too often slow and fumbling. This does not go well with our hurry hurry lifestyles. The whining response from the PD person is "I am doingit as fast as I possibly can. Please be patient!

Sleep disturbance is more than occasional for the one with the masked face. Yawning and loss of attention help to pile on the discord.

Fluctuation of moods can add to disruptions. Within the short span of time that medication wears down, a swing in feelings or any sense of well being can change into a "joyless cranky wanting to withdraw" mood. This inconsistency adds a wariness to the relationship.

The focus in this presentation is not meant to detract from the lofty qualities that are companion to warm hearted people and their care givers. It is meant to raise the curtain on the predominant struggle that too often is buried under the "chin-up" rallying cry that can misdirect some well-intended cheerfulness.

Suppression of the powerful torment that can encompass this chronic condition can lead to an unwillingness to engage the despair and inaction that can bring life to a creep!

The Parkinson mask can hide the face from the reality that exists in a warm and tender heart that may be in disguise.



Peter A. LeWitt M.D.

In both small steps and optimistic leaps and bounds, drug development for Parkinson's disease (PD) continues to make progress.


Therapeutics for this disorder involves a growing list of medications, the latest of which are two new drugs of the monoamine oxidase-B (MAO-B) class. Both rasagiline (Azilect) and selegiline (Zeldapar) have recently achieved approval from the FDA for marketing and are
now available.

Each acts for PD by blocking the breakdown of dopamine, the brain chemical deficient in PD and responsible for most of its symptoms. Extending the duration of action for dopamine makes for less wearing-off between doses and otherwise amplifies the anti-Parkinsonian effects of levodopa (the active ingredient of Sinemet).

These MAO-B inhibitors don't represent a new treatment concept, however. Selegiline has already been available for more than 15 years in a tablet form (marketed as Eldepryl) and is not all that widely used for PD because of its limited efficacy. With the new products serving as MAO-B inhibitors, there will be the opportunity to re-assess the value of this class of drugs for PD.

In addition to extending the dose-by-dose effects of levodopa, both selegiline and rasagiline have also been evaluated as possible ways to slow down the progression of PD. This elusive goal may have been met with rasagiline, which has a published study indicating that this drug produced a small but scientifically intriguing lessening of disease progression in a group of patients. Selegiline has also shown some evidence for this property to a limited extent, although no drug to date has shown any dramatic effect at achieving neuroprotection for PD. This is why research into new therapeutic options against the underlying disorder is continuing and needs to test other potential protective agents.

Neuroprotective Strategies

Under the support of the National Institutes of Health, a nationwide consortium of PD research centers has been investigating promising neuroprotective strategies. In recent months, completed pilot studies have shown that various compounds, including minocycline, coenzyme Q-10, and creatinine, may slow the progression of PD (at least partially). Since these potential treatments seem safe and well tolerated, more extensive studies are planned to answer these important questions. The next study to begin is planned to start later this year. Other trials recently completed with the intent of finding a possible neuroprotective therapy haven't been successful; a study with a compound named TCH-346 was negative. The search for a possible cause (or causes) of PD has generated several approaches for treatment, and additional neuroprotection studies are in various stages of planning.

Suffice it to say, at the moment nothing is proven to work against the progression of PD except a bit of luck. Fortunately, for many patients, PD is not a disorder of progressive disability. Often there is no major change in PD status after a few years, and usually levodopa and the other PD medications continue to be beneficial even after 10 or more years of continued use.

Searching to Control Symptoms: new methods of delivery

In recent months, symptomatic treatment of PD has had some new developments as well. A new drug for PD, rotigotine, has been introduced in Europe and elsewhere as Neupro. This compound is a dopaminergic agonist, a class of drugs that also includes drugs that have been available for many years in the U.S., including Mirapex, Requip, and Permax (pergolide). Neupro is unique in how it is delivered: it is absorbed through the skin and so has been marketed as a transdermal patch with continuous delivery over 24 hours. So far, experience with Neupro suggests that it is effective and well tolerated. However, whether this drug or its unique mode of delivery will offer a significant advantage over currently marketed medications of the same class still remains to be learned.

All of the dopaminergic agonists can serve as alternatives or supplements to levodopa, boosting its effects and helping against "freezing" or wearing-off problems that are common with levodopa alone. The use of dopaminergic agonists may also help to avoid dyskinesias when used as initial treatment as alternative or added to levodopa from the start. Some studies have suggested that dopaminergic agonists may also have a neuroprotective role in addition to their symptom-treating effects. They are expensive, however, and can have a number of side effects: sedation and light-headedness more than that caused by levodopa.
Dopaminergic agonists have also been recognized to have rare, but sometimes severe, problems, including the triggering of compulsive behaviors such as excessive gambling
and excessive eating.

Several medications are undergoing research trials for improving side effects occurring with chronic PD. These include two drugs that are undergoing testing for suppressing involuntary movements (dyskinesias) and one for controlling hallucinations resulting from PD medications. Further information about these studies is available from my office (248-355-2452), or from two online sites compiling information about PD trials, www.ClinicalTrials.
gov and Other exciting news is that a transdermal (skin patch) form of levodopa is under development. The Michael J. Fox Foundation for Parkinson's Research recently announced that it has awarded a halfmillion dollar grant for further research and development of this transdermal product. For many patients, achieving more constant levels of levodopa than currently provided by oral levodopa formulations would be the means for improving control of motor fluctuations. If successful, the transdermal form of levodopa could be quite revolutionary in treatment of advanced Parkinsonism.

Another novel means of drug delivery under development in Europe is a nasal spray version of apomorphine. Currently, an injectable form of apomorphine (Apokyn) is marketed in the  U.S. for the purpose of rapid rescue from "frozen" states. When needed, PD patients can give themselves an injection of Apokyn in order to promptly return to an "on" state; this can occur within a few minutes, even when the oral medications have failed to take effect. A more convenient rapid-acting form of apomorphine (such as a nasal spray) would make this drug more acceptable to PD patients than the current injected form. There is also the possibility for development of continuous delivery forms of apomorphine (delivered by subcutaneous infusion or by patch form). A patch form of apomorphine has been prototyped, while continuous infusion is available in several European countries and elsewhere.

PD still presents many challenges for the medications of the future. Among the unmet needs are ways to reverse the problem of imbalance, especially falling backward. The flexed posture of PD, swallowing and speech difficulties, and situation-specific "freezing" (such as can occur while starting to walk, or at doorways) are all challenges for improved drug therapy. Scientists have not yet determined where in the brain and what types of biochemical disturbance underlie these problems.

Amplifying the effects of levodopa and dopaminergic agonists for increased PD control is another need, especially for the patient with long-standing PD. There are some new ideas that have led to novel classes of medications. For example, a drug currently under development, istradefylline (KW-6002), has been demonstrated to improve motor fluctuations. This compound is the first representative of a new class of PD medications called adenosine A2a antagonists. Like deep brain stimulation of the subthalamic nucleus, (a surgical procedure in which electrodes are placed in selected targets in the brain for relief of PD symptoms), istradefylline appears to turn off a particular brain pathway responsible for fluctuations in control of Parkinsonism. This drug and others related to it may lead to expanded opportunities for restoring the kind of benefit most patients have from levodopa in the first few years of PD therapy.

Editor's Note: The Michigan Parkinson Foundation wishes to acknowledge Dr. Peter LeWitt for his continuing participation in all activities of this organization in order to better the lives of people with Parkinson's and their families. He selflessly contributes articles regularly to The Messenger with breaking news in research and treatment of PD.



By Susan R. Vergilio, OTR

It has been said that the "horse symbolizes the drive for freedom shared by people of all nations" (author unknown) and that "in riding a horse, we borrow freedom" (Pam Brown). All who come in contact with these beautiful animals, especially those patients receiving hippotherapy, can confirm these quotes. Hippotherapy is a treatment tool used by a specially trained occupational, physical, or speech therapist to treat patients with neurological problems. By using the specific movement of the horse, the therapist can influence the patient's nervous system and ability to plan their movement. Why the horse? The horse's movement is rhythmic and repetitive, and with the right horse, it is symmetrical. The horse's stride also simulates human walking in terms of the influence of movement on the hips of its rider. It also encourages motor learning, a treatment principle that therapists use in treatment, so the movement of the horse creates responses that are essential for walking and other activities, which can be carried over off of the horse. The horse acts as a three-dimensional mobile mat from which therapy can occur. As therapists, we are continuously trying to teach "normal" movement to our clients with neurological problems, and the horse can naturally assist us with this. The movement of the horse can improve balance, strength, tone, timing, coordination, and postural control, which can all lead to improved functional ability of the person with Parkinson's disease. In addition to the natural influence of the horse's movement, there is added benefit from the natural animal-human bond that occurs throughout the sessions. Animals are extremely motivating and can inspire us and touch us in ways that the traditional setting for therapy cannot. This is especially important because therapy is a participatory program. Your therapist can't just do therapy to you; you have to participate and be engaged in the activities in order for them to be effective. Let's face it, when you have been involved in the same traditional treatment activities for a long time, they become a bit repetitious. This leads to decreased patient motivation and participation and therefore decreased improvements in treatment. This is why hippotherapy opens up a whole new opportunity for patients.

Tim is a 47 year old man with Parkinson's. He receives hippotherapy treatments once a week. Tim was in his 30's when diagnosed with Parkinson's disease. In the past, he has been involved in traditional therapy and recently started hippotherapy. He, as well as his family, feel that the hippotherapy has improved his function at home as well as improved his mobility overall. He had developed the very classic signs associated with Parkinson's disease, including a flexed posture, decreased coordination, increased rigidity, as well as "scissoring" in both of his legs. He was wheelchair-dependent prior to starting his hippotherapy sessions. He is now able to walk short distances, with improved control and coordination. He is noted to have a visible change in control over his legs, with less "scissoring" immediately following his session. Tim says he feels he hasgreater self- esteem, and feels the sessions are "good for the soul," not to mention feeling less rigidity through out his body following his hippotherapy sessions.

Hippotherapy is not for everyone. All patients must be carefully screened. Typical hippotherapy sessions are 1-2x/week, 30-60 minutes in duration, and are used in addition to traditional therapy techniques. Treatment can only be effective if the therapist has been specially trained to utilize the proper movements of the horse from an accredited program. For more information regarding hippotherapy or if you interested in receiving hippotherapy services please contact Sue Vergilio, OTR at Stable Possibilities LLC, at 586-292-8472.



by Michelle Elmo, Physical Therapist

Good posture is important for everyone. In the general population, many back and neck problems stem from poor posture. In addition to this, poor posture decreases a person's ability to weight shift appropriately to maintain balance. Patients with Parkinson's disease are often already set forward due to poor posture and have minimal ability get to neutral let alone shift weight backward without falling. Therefore it is even more important that these patients be diligent about fighting bad posture. So how do you do that?

First, by stretching tight muscles: Pectoral muscles (the front of the chest) Ilipsoas muscle (front of the hip) Hamstrings (back of the upper leg) Gastrocnemius and Soleus (back of the lower leg)

Second, by strengthening the muscles that tend to get weak: Gluteus maximus- buttocks Erector spinae- on either side of the vertebrae of the back Posterior scapular retractors-between the shoulder blades Cervical extensors- in the neck and keep the head from falling forward.

Thirdly, correct positioning at all times: Get rid of extra pillows, only use one pillow to support the small of the neck when you sleep. Sit back against the chair and pull head back- "chin tucks". Walk tall- always think shoulders back, head up, chest out and lead with your heels.

We know exercise works! Many research articles document improvement in balance, confidence, quality of life and reduced fall rates with persons with Parkinson's disease when they are participating in an exercise program. Studies have looked at community verses home based programs and have found improvement with either. Improvement is usually noted in first 3-4 weeks of exercise, with exercise occurring 3-5 times per week. Exercise needs to be a lifelong habit and the benefit fades if exercise stops.

There are many publications with exercises especially for persons with Parkinson's. Many persons not familiar with exercise or anatomy of muscles may have a hard time simply following written instructions for exercises. Don't be overwhelmed! Please ask your physician for a physical therapy referral so that you can be confident and performing exercises that will benefit you maximally. If you are able to safely leave home you can go to an outpatient clinic. If you are rarely and not routinely leaving home you may receive services in your home.

Michelle Elmo is a Physical Therapist, graduate of Grand Valley State with a Masters in the Science of Physical Therapy. She currently works at Gentiva Home Health in Jackson. This article is a portion of her presentation to the Jackson Parkinson Support Group.




The Messenger - Fall 2010 Issue. Comments by Brian Cooper, OTR, Residential Home Health, Member, MPF Professional Advisory Board.

Preliminary studies show that patients with Parkinson's disease who regularly do certain exaggerated movement exercises are seeing reductions in their symptoms. In an article published in MedPage Today,, the senior editor reported on a study of 20 patients who underwent a supervised program called LSVT BIG for eight weeks and then worked with the Nintendo Wii video gaming system in the final four weeks.

The patients participated in a supervised open-floor series of exercises, which stresses large extensions and movements of the arms and legs. The Wii activities encouraged patients to swing their arms and move vigorously. At the end of the study, all patients showed measurable improvements.

Locally, Brian Cooper, an occupational therapist with Residential Home Health, explained that BIG is based on a successful speech therapy program for PD patients, called LSVT (Lee Silverman Voice Treatment). That therapy helps participants enhance sound and articulation by speaking at an exaggerated volume.

"LSVT BIG teaches patients how to move better, focusing on high amplitude movements to overcome perceptual deficits," said Cooper. "It shows patients, through modeling, how to make bigger movements, then reinforces through practice how to perform high intensity, high amplitude exercises."

Cooper said that patients are taught to take "great big" steps with arms extended and swinging forcefully. They are encouraged to overcome the typical shuffling steps of PD. The concept behind the program is to increase awareness of how movements are made and, by exaggerating the way they are performed, learn more effective techniques. In addition to improving walking, BIG therapy sessions can help patients work on other daily functions such as dressing.

In Michigan, certain physical and occupational therapists have been trained in BIG therapy. Typically, the therapy is conducted in one-hour sessions four times a week on an outpa¬tient basis and is customized when appropriate. After about three or four weeks, patients can practice on their own. Contact your physician for a referral. For more information, call your physician, or (866)902-4000.



by Ray Buch (from Lansing Area Parkinson Support Group Newsletter, June 2011). Ray has been a clinical social worker, flat-water paddler and kite flyer through his entire adult life. He delights in his wife and lifelong companion, Lindy, his two adult offspring, his 93 year old dad and an insatiable curiosity.

What does it take to stay upbeat in the face of a siege on one's health (or on one's self). When every day is a battle and no matter how many battles are won, the chances of winning the war are nil. Under these circumstances, we should find that nearly everyone is depressed or despondent. The fact that everyone is not depressed or despondent is worth understanding.  

We often begin to understand something difficult by studying an extreme example of the issue. One of the most difficult chronic situations to "get through" is being a prisoner. In 1946, Viktor Frankl wrote Man's Search for Meaning. A survey by the Library of Congress and the Book of the Month Club in 1991 deemed it "one of the ten most influential books in the United States." Frankl searches for the reasons some survived the German concentration camps and some did not. He learned that aside from the harshness of the situation, if a person retained the belief that he had freedom to choose (whether to be sad, despondent, angry or not), his chances of survival went up remarkably. Sometimes it was the belief that others were worse off, or a moment of camaraderie; at other times it was an imagined image of a beloved person (wife, lover, parent even God).

I've talked with some of the individuals who have had PD or other chronic conditions over a longer period of time. They indicate that the essential element for managing one's self is to choose to "stay in the present," "be occupied with what can be rather than what might be," and "prepare for tomorrow, but live in today."  The guidance is to maintain one's mind in the present. Some psychologists believe that increased levels of anxiety come from trying to solve the future problems of one's life without having enough information. The idea is that the mind continues to cycle back over the same unresolved questions because no new information has been acquired to help resolve the problem. The obvious answer is to provide new information, which is why many people with PD spend a great deal of time reading about
every aspect of the disease. However, there is little possibility of getting much information about how things end up for them.

A.J. Heschel, one of the most prominent religious thinkers of the 20th century, used the term radical amazement to denote being constantly aware of the large and small things, processes and events as a means to being aware of and in contact with God. This is very close to many of the meditative aspects of yoga:  constantly being in the present. The many forms of yoga and the preoccupation with practice attest to both the difficulty and reward that comes from "staying in the present."

Perhaps a less ethereal and more common example of "staying in the present" might be useful to many of us. Consider for a moment the idea of celebration. The dictionary has two common definitions.

• To celebrate a holiday or commemorate a special day like Christmas, Independence Day  or Thanksgiving where we spend some time thinking about the special issue being commemorated and enjoy a certain amount of revelry.

• To proclaim, publish, praise or make a ceremony to acknowledge.

It is this second type of celebrating with which we are familiar that is similar to radical amazement. Imagine if we were able to maintain the awareness of not just one idea or situation or beautiful thing every day, but maintain that same level of delight, joy and awareness of many, many things every day. We certainly wouldn't have much "brain time" to be over-concerned about what might happen five or ten years in the future.



by John Argue

A proactive Parkinson's Support Group in the Detroit Metro area contacted us for our professional input on the book titled Parkinson's Disease and the Art of Moving, written by John Argue. We also reviewed the companion videos that incorporate the theories found in this text, which assists in the performance of the exercise program.

John Argue is a gifted teacher with a movement/theatre/ drama therapy background who really understands the various challenges of the Parkinson's patient. Most recently, he has focused his talents toward teaching movement and voice classes for people with Parkinson's disease. I was impressed by the book and videos for many reasons. I appreciated the team approach between the family/ caregiver/client with his instructions and insights. Safety is encouraged with step-by-step exercises to be mastered before continuing to the more progressive advanced standing and floor work. The exercises begin with seated warmup activities and progress to motor planning, coordination, functional weight shift, body awareness and mobility training.

The book is helpful not only for caregivers and clients, but also for any therapist working with clients with Parkinson's disease and/or movement challenges. I particularly appreciate the yoga and Tai Chi influence within the program, which stress quality of movement, grace, and promotion of improved quality of life, an increased sense of well being, alignment, and relaxation. His emphasis on timing and rhythm also assists quite well with ambulation. I am now utilizing many of his techniques with my current patients with increased success.

People at all levels can perform many of these exercises. He also encourages caregivers to care for themselves and stay physically fit. This is a great place to begin an exercise program and I highly recommend using the book and/or video in a safe and supervised (if needed) environment. Remember to do something everyday for your health and fitness...and never give up!

The website for these resources and to learn more about John Argue is:, or phone 510-985-2645. The book is also available locally at Borders Booksellers.

Note: St. John Health System, in Detroit, recently started a weekly exercise program, in which we are also utilizing his philosophy. It meets every Tuesday at 3:00pm. Feel free to contact us if you have questions or are interested in participating in this exercise group at 313-343-3744. At home, the equipment is minimal to start. All you need is a chair with arms and a tennis ball.




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