Parkinson’s won’t shake John

Advances

sponsored by Abbott

Author: SponsoredPublished: 24 April 2018

Parkinson's LifePrep: Parkinson's LifeCook: Parkinson's LifeServes:

John Alexander

John Alexander was diagnosed with Parkinson’s in 2010, but was determined to forge a new path. Thanks to successful deep brain stimulation therapy, he hasn’t looked back


An avid long-distance cyclist, triathlon competitor, and author, you’d never guess John Alexander is living with Parkinson’s disease. Diagnosed in 2010, the news came as a surprise to the athlete, father and grandfather: there was no family history of the disease. According to John: “No one knew how it was going to play out and progress.”

Working closely with his neurologist, John followed a medication-based treatment plan for more than six years to manage his symptoms. But by the autumn of 2016, he began to worry about the volume of medication he was taking – and his symptoms were only getting worse. John found it increasingly difficult to remove his keys from his pocket, open doors, or carry a glass of water. Getting dressed each morning became an arduous task. He could no longer read his own handwriting and had to avoid ordering certain foods that required too much concentration or fine motor skill to eat.

This was the moment that John decided enough was enough. He wanted to map out a different care path, and with the help of his neurologist, Dr. Kelly Foote – a movement disorder specialist at the University of Florida Health Center for Movement Disorders and Neurorestoration in Gainesville, Florida, US – he decided to explore non-pharmaceutical options. John enquired about deep brain stimulation (DBS), a therapy he’d learned about from a Parkinson’s advocate who found relief through its use.

DBS is a treatment option that provides personalised, clinically-proven control of Parkinson’s disease symptoms. Since its introduction in 1990, DBS therapy has helped over 120,000 people worldwide.1 The technology uses an implanted device, similar to a pacemaker, to send stimulation signals to areas in the brain that cause involuntary movements. In a study of people with Parkinson’s disease, those who received DBS therapy versus other medical therapy experienced increased good quality “on-time,” decreased “off-times,” the ability to reduce medication, and a sustained improvement in their quality of life.2

Based on his history and overall health, Dr. Foote agreed that John could be a viable DBS candidate and pursued an intense assessment, concluding that John should undergo the Abbott Infinity DBS procedure. He recommended implanting the Infinity DBS system because it uses directional lead technology – a major technological advance that allows for more precise targeting with stimulation currents. As an added benefit, the Abbott DBS therapy is the only one that uses a wireless iOS device (an Apple iPod) to control stimulation, allowing the patient to receive discreet, personalised treatment in the palm of their hand.

John with his family

With renewed hope for the possibility of controlling the impact of his symptoms, John underwent the surgery in October 2016.

Relief of his symptoms—tremor and rigidity—came swiftly. John says the difference is so profound that observers can tell within seconds when he uses his iPod controller to briefly turn the therapy off. “There is a dramatic difference in the level of control of my tremor when the device is turned on and working,” he says.

Since the surgery, John has been able to cut his medications by half, his pain has lessened and he feels more comfortable in social settings. “The results from my DBS surgery were dramatic,” he says. “I was elated. I was so glad not to have some of the challenges.”

That hasn’t stopped John from challenging himself, however. In less than two years since his surgery, John has ridden more than 3,000 miles on his bike, completed the University of Florida Super Sprint Triathlon – not once, but twice – and even climbed a mountain in Scotland, UK. He is also an active Parkinson’s advocate, serving as an Ambassador for the Davis Phinney Foundation and a board member of the Parkinson’s Association of Central Florida, US, and has attended the 4th Annual World Parkinson’s Congress in Portland, Oregon, US.

“I have time to do things that are really important to me – and help other people with the condition realise that they can still live a very full life while having Parkinson’s disease,” says John.

John hasn’t allowed Parkinson’s to keep him from the activities he enjoys, including spending time with his two children and three grandchildren. But now, thanks to successful DBS therapy, he has the renewed strength and energy to pursue his passions. DBS therapy “gives me a sense of calm,” John says. “It gives me more time to do things that are really important to me.”

There is no cure for Parkinson’s disease (PD), but there are options available to treat symptoms. The first-line therapy is medication.  Surgical treatments are also available. It’s important to discuss with your doctor what’s right for you along with the risks and side effects of each option, such as motor fluctuations or permanent neurological impairment.

As with any surgery or therapy, deep brain stimulation has risks and complications. Most side effects of DBS surgery are temporary and correct themselves over time. Some people may experience lasting, stroke-like symptoms, such as weakness, numbness, problems with vision or slurred speech. In the event that the side effects are intolerable or you are not satisfied with the therapy, the DBS system can be turned off or surgically removed.

Risks of brain surgery include serious complications such as coma, bleeding inside the brain, paralysis, seizures and infection. Some of these may be fatal.

For further information on deep brain stimulation please visit the European Parkinson’s Disease Association website.

Learn more about Abbott’s Infinity™ deep brain stimulation therapy for people living with Parkinson’s disease

This story reflects one person’s experience; not everyone will experience the same results. Talk to your doctor about the benefits and risks of your treatment options. Abbott does not provide medical services or advice as part of this website.

This article is sponsored by Abbott. The information in this article is given for information purposes only and does not represent an endorsement by the EPDA of any particular treatments, products or companies. This article is not a substitute for advice from your doctor, pharmacist or other healthcare professional. Parkinson’s Life makes no representations or warranties of any kind, express or implied, about the completeness or accuracy of information provided.

References:

1Fukaya, C., & Yamamoto, T. (2015). Deep brain stimulation for Parkinson’s disease: recent trends and future direction. Neurologia Medico-chirurgica 55(5), 422-431.

  2St. Jude Medical. Report #C-04-01. 2012.

Go Back

Share this story

Comments


Related articles


PL Christmas Season's Greetings

Perspectives

Parkinson’s Life highlights: our favourite stories of 2015

A round-up looking back at some of the best stories from this year

READ MORE
100 For Parkinson's lead

Special reports

High blood pressure, arthritis and depression are most common conditions in Parkinson’s patients

“We cannot gather too much data”

READ MORE
PD Warrior Insight Summit lead

Resources & Tools

PD Warrior INSIGHT Summit Into Parkinson’s 2018: virtual conference

Raising funds for the Shake It Up Foundation who strive for a cure

READ MORE