PASB
PO Box 6254
Santa Barbara, CA 93160-6254
Phone:  805-683-1326
email:   kttbell@mypasb.org

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Local Parkinson’s Group Hosts Annual Symposium

April Mesa Paper

by Jeanne West

 

Did you know that in Santa Barbara County, there are approximately 4,000 people diagnosed with Parkinson’s Disease?  In fact, let me set the record straight on that.  Parkinson’s Disease (PD) is not a disease at all, but rather a progressive disorder of the brain, caused by a decrease in production of dopamine, a neurochemical which controls motor functions.  It strikes people of all ages and ethnic groups and is believed to affect about one million Americans.  Michael J. Fox, a well-known television and movie star, was afflicted with Parkinson’s in his 30’s (early onset) and continues to lead a very active, productive life more than 20 years after being diagnosed.  We recently learned that Neil Diamond, famous composer and singer now in his mid-70’s, was just diagnosed with Parkinson’s Disease and will retire from singing but will continue to compose songs.  And there are many more with Parkinson’s known to you and to me who have continued to work and lead normal lives by managing the symptoms of the disease.

Most of us recognize signs of the disease by the characteristic upper extremity tremors and shuffling gait.  This often leads to slow movement, difficulty with balance and impaired mobility.  Other common symptoms include loss of facial expression (“masking”), depression or mood swings, speech (voice becomes very soft as the disease progresses) and/or swallowing problems, and constipation.

There is a wonderful resource group in town known as the Parkinson’s Association, whose mission is to “offer programs that empower those with Parkinson’s and their Care Partners to be pro-active in managing their day-to-day lives, working to delay progression, and committing to living well with Parkinson’s.”  The Association does this by offering regular educational programs, support groups, fun social events and exercise classes throughout each month, right here in Santa Barbara.  Most of these are offered free of charge or a very slight donation is requested (for the exercise classes).

In the spring of each year, the Santa Barbara Parkinson’s Association hosts a large educational forum designed to bring the latest information related to research findings and the newest treatment modalities used to manage Parkinson’s symptoms to our community.   This year marks the 12th Anniversary of the Symposium and features top researchers and educators in the field of Parkinson’s Disease.  “Living Well With Parkinson’s” will take place on Saturday, April 28, 2018 from 9:00 a.m. – 3:00 p.m. at the Elks Lodge – 150 N. Kellogg Avenue in Santa Barbara. The daylong program features Keynote speaker, Dr. Carrolee Barlow, Director of the Parkinson’s Institute and Clinical Center in Sunnyvale, CA.  The title of her presentation, “We’re in this together:  causes, treatment, current research” will provide new knowledge and insights into the latest research findings and success stories in treating Parkinson’s.

Another physician, Dr. Indu Subramanian Indira, Assistant Clinical Professor of Movement Disorders at UCLA and Clinical Director of the Greater Los Angeles VA Medical Center will share the podium with Dr. Barlow in discussing the latest research findings and trial success stories related to Parkinson’s.

Here in Santa Barbara, we are quite fortunate to have two local physicians (Dr. Sarah Kempe-Mehl and Dr. Erin Presant) who are board certified neurologists and movement disorder specialists. They will discuss their present experiences in treating people with Parkinson’s – a snapshot of the local experience.   The panel of four physicians will entertain a Question/Answer session, engaging the audience in discussion of a variety of concerns related to diagnosing, treating and living with Parkinson’s Disease.  Both local physicians have been strong supporters of the local Parkinson’s Association since their arrival in Santa Barbara within the past ten years.

The Symposium is usually a packed house event, so I encourage you to register now if you wish to attend.  There is a very modest $25 fee and that includes morning snacks, lunch, an opportunity to visit exhibit booths and, of course, a GREAT conference.  Go to mypasb.org to register.  If you have any specific questions related to the Parkinson’s Association or the Symposium, feel free to contact office manager, Kitty Bell at kttbell@mypasb.org or phone her at (805) 683-1326.

For those of you who may have been diagnosed with Parkinson’s Disease, have a family member or know someone with Parkinson’s, please remember this: “you (or that loved one) may have Parkinson’s, but Parkinson’s does not have you (them).”

Last, I want to share with you that I have been most lucky (well, I consider it blessed) to have been selected as the new Community Engagement Manager for Hospice of Santa Barbara.  Stay tuned …you will be hearing more about my new job in a future article.

 

Jeanne M. West, RN, MHA

Board Member, Parkinson’s Association

AND NEW Community Engagement Manager – Hospice of SB

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