~ August 2013 SCW Parkinson’s Support Group Newsletter ~

Hello Everyone,

I hope this newsletter finds you well and cool. Please remember to stay hydrated in the heat. As a reminder, the monthly meeting will be held on Tuesday, August 20th at 3pm. We will have a brief presentation about home care, living options and rehabilitation, followed by our smaller groups.

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AUGUST FEATURE:

What is “REPOSITIONING” and what is its impact in Parkinson’s Research?

“Repositioning" is the process of testing a drug that is already FDA-approved or that has been proven safe in a clinical trial for a certain indication. This is to determine whether the drug might be efficacious in the treatment of another therapeutic area, such as Parkinson's disease (PD). Repositioning can drastically reduce the timeline for getting a drug into clinical testing.

The Michael J. Fox Foundation (MJFF) has paid particular attention to repositioning over the past few years, launching its first-ever repositioning-specific Request for Applications (RFA) in 2010, funding nine research teams for awards totaling $3.4 million. Projects of interest from this RFA focused on a tuberculosis vaccine, the high blood pressure drug isradipine, and the antidepressant duloxetine, to determine if any of these drugs might have disease-modifying potential for PD. MJFF also supported a team investigating if a compound used to treat Attention Deficit Hyperactivity Disorder (ADHD) might also provide symptomatic relief for Parkinson's patients.

Currently, the Foundation is also supporting a Phase 4 clinical trial of naltrexone, a drug marketed for alcohol abuse, to treat compulsive disorders associated with PD. And just this past month, a team of London-based researchers supported by the United Kingdom's Cure Parkinson's Trust reported positive clinical study results for the development of a diabetes drug called exenatide as a disease-modifying treatment for PD.

Enthusiasm for repositioning continues to grow, from disease foundations like MJFF, to pharmaceutical companies, to the government: Just last month, the National Institutes of Health (NIH) announced that it would fund nine research projects totaling nearly $13 million into previously abandoned drugs, for new indications including Alzheimer's disease.

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ONLINE RESOURCE OF THE MONTH:

Live Online Chats with Alzheimer's Experts - Help for Alzheimer's Families

Live online chats talk about difficult behaviors, activities to engage loved ones with the disease, sleep behaviors and much more. View upcoming and past discussions with experts in the field. Check it out at: https://www.helpforalzheimersfamilies.com/alzheimers-dementia-coping/family-caregiver-alzheimers-training/live-chats/

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DID YOU KNOW??Deep Brain Stimulation (DBS) May Offer Hope

by Dr. Virgilio Gerald H. Evidente, Movement Disorders Specialist

Deep brain stimulation (DBS) may offer hope to patients with a variety of movement disorders that are not adequately treated by conventional drug therapy. DBS is currently being used most often to treat advanced Parkinson's disease (PD), Essential Tremor (ET), and dystonia.

In Parkinson's patients, DBS can help alleviate motor fluctuations (effect of medications become shorter and shorter), dyskinesias (squirmy or jiggling movements of different parts of their body upon taking PD medications), severe tremor, slowness, shuffling, and other symptoms, which their medications may no longer adequately treat. Most patients with PD who undergo DBS are able to reduce to 50% their previous doses of medications. Some are even able to get off their medications for a few months or years after DBS. For those with severe tremor that is not sufficiently alleviated by PD medications, DBS offers a very effective therapy for controlling, and in some cases, eliminating their tremor.

In Essential Tremor, DBS is most often recommended when various anti-tremor drugs have been tried with insufficient relief. DBS offers dramatic improvement of tremor. Tremor in any part of the body may respond, including tremor of the hands, legs, head, face, eyebrows, lips, jaw, voice, or trunk. Unlike medications which usually lose effect with time, DBS usually offers a sustained relief of tremor through the years. Patients will need periodic adjustments of their DBS stimulator similar to medication dose adjustments.

Dystonia is a condition where a certain body part spasms, twists, turns, or has an abnormal posture. Various parts of the body can be involved including the eyes, jaw, tongue, neck, extremities, or trunk. When oral medications are not effective enough, many patients receive

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botulinum toxin injections every three months. Some patients, however, develop a diminishing response to botulinum toxin injections, or become resistant to them with time. Such patients are good candidates for DBS. Some examples of dystonia that are amenable to DBS are blepharospasm, jaw dystonia, cervical dystonia (also known as spasmodic torticollis), limb dystonia, trunk dystonia, or even generalized dystonia.

Deep brain stimulation is also being used to treat other conditions like tics or Tourette's syndrome, chorea, obsessive compulsive disorder (OCD), cluster headaches, and epilepsy.

Deep brain stimulation can now be done both awake and asleep. It can also be done on patients as old as their early 90's as long as they are medically healthy otherwise. Consult your local neurologist or movement disorders specialist to discuss if you may be a candidate for DBS. It may have a life-changing effect on you and offer you hope for your neurological condition.

Dr. Virgilio Gerald H. Evidente is with Movement Disorders Center of Arizona, please visit www.movementdisorders.us for more information. If you are interested in becoming a patient of Dr. Evidente, the contact information is:

Movement Disorders Center, 9590 E. Ironwood Square Drive, Suite 225, Scottsdale, AZ 85258Tel (480)526-5441; (480)307-9828

Fax (480)526-5443Email: info@movementdisorders.us

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A word from our sponsors TEVA Pharmaceuticals:

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I hope to see you at our support group next week! Warmest regards…..Regina

Regina Thibideau, M.Ed.Intake/Outreach SpecialistBenevillaPHONE: (623) 584-4999FAX: (623) 215-0178

Co-Sponsors for this group include:

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Support Group:At: Shepherd of the Hills United Methodist Church

13658 W. Meeker Boulevard Sun City West, Arizona 85375

AUGUST 20 th , 3:00 PM: Brief presentation about home care, living options and rehabilitation, followed by our regular small

support group gatherings.