The following includes excerpts from Parkinson’s patient Kathleen’s forthcoming book.
“I laughed that my left thumb was twitching uncontrollably. Surely it was from the stress of planning a big wedding in a very short timeframe. Months later I am at a neurologist’s office drawing backward circles, pinching my fingers, trying to stand straight, balance and not fall backward. Diagnosis: Mild Parkinson’s.
“That was in 2015. Although I am hopeful today, at that time I was confused and afraid. Those of us with Parkinson’s have both movement and non-movement symptoms. We often feel out of control in our bodies and out of sorts in our thinking. We depend on others to help with the simplest to the most private of tasks. We learn to accept our condition and not dwell on the embarrassing moments like falling in public. Managing daily symptoms is challenging to say the least, but believe it or not there is cause to be optimistic.
“Although having Parkinson’s can suck the life out of us, once we accept the diagnosis, we can be on our way to enjoying life again. In the midst of that same suffering, my life has flourished in ways you cannot image.
“Connecting with others with Parkinson’s and participating in support groups can prove invaluable to many. Orange County has an amazing support network. Organizations like Parkinson’s Orange County offer help in finding the resources anyone may need. RX Ballroom Dance helps reduce some symptoms of Parkinson’s patients through dancing. Their mission is “to use ballroom dance to preserve and enhance the quality of life in people who are confronting neurological conditions.” And Rogue Physical Therapy is for people with Parkinson’s. Their goal “is to give you the tools to live your healthiest and most active lives possible.”
In 2023 Kathleen had DBS (Deep Brain Surgery) to help manage her Parkinson’s symptoms. Her Movement Disorder Neurologist, Dr. Ronak Vora, says DBS works best for “one who typically has had Parkinson’s symptoms for at least 4 years and meets one of the DBS indications (bothersome tremor, motor fluctuations, stiffness and/or bothersome dyskinesia). And one who has been well-informed of the anticipated benefits and potential risks/side effects of DBS therapy by their Movement Disorders Neurologist.”
“The reason I elected to get deep brain stimulation was HOPE! I believed it would open my possibilities of living a more comfortable life. When faced with the decision about which product to choose from, I went with Abbott. My movement disorder neurologist, Dr. Ronak Vora, introduced me to Kayla from Abbott months prior to the surgery. She always answered my questions and led me to talk with a few people that had been living with DBS. I learned of their symptoms improving and began to feel more comfortable with the process.”
A specially trained Stereotactic Neurosurgeon does the DBS procedure which can be done asleep or awake. Kathleen’s Neurosurgeon, Dr Alex Taghva, says “I do DBS completely asleep and in one surgery, to ease the burden on the patient. DBS has been approved by the FDA since 1997 and more than 200,000 DBS procedures have been performed worldwide with steadily improving technology and results. Modern imaging and navigation makes it highly precise”. Abbott now has the smallest, longest lasting battery which needs to be recharged as few as 10 times a year.
“Since DBS my tremors, slowness and stiffness have significantly improved as well as my sense of hope for the future. My life has been renewed as I live for today.”
To learn more about DBS resources available in Orange County, please call (949)357-0721 or go to www.parkinsonsoc.org or www.lifewithdbs.com
