{"id":36885,"date":"2021-01-03T09:51:15","date_gmt":"2021-01-03T16:51:15","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=36885"},"modified":"2022-12-12T10:19:30","modified_gmt":"2022-12-12T17:19:30","slug":"dbs-for-parkinsons-helps-young-rocket-scientist-fight-worst-parkinsons-symptoms","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/dbs-for-parkinsons-helps-young-rocket-scientist-fight-worst-parkinsons-symptoms\/","title":{"rendered":"DBS for Parkinson’s: nothing short of a ‘miracle’ for young rocket scientist"},"content":{"rendered":"
<\/div>
\"DBS
Before getting DBS for Parkinson’s, Mike Whitt had very little energy to keep working and spend tiem with his family. Now, he has relief from some of his toughest symptoms and can enjoy time with his wife, Kathryn, sons Daniel, 12, left, Nathaniel, 10, center, and daughter, Annabelle, 7. Photos by Cyrus McCrimmon for UCHealth.<\/figcaption><\/figure>\n

Mike and Kathryn Whitt\u2019s story is one of determination, resilience, and patient self-advocacy<\/a>. But foremost, the Whitts hope to convey that deep brain stimulation (DBS) for patients with Parkinson\u2019s disease is far from a last-ditch option it used to be.<\/p>\n

Their story begins in fall 2013, shortly after catastrophic flooding tore through Longmont. Their home stayed dry; that of their best friends was destroyed. Baby Annabelle had just joined older brothers Daniel, 5, and Nathaniel, 3. Mike was a 35-year-old Ball Aerospace electrical and computer engineer who developed test equipment for space instruments.<\/p>\n

One day, he held his baby daughter and instinctively patted her gently on the back. He realized he couldn\u2019t do so with any sense of rhythm. He mentioned it to Kathryn, a schoolteacher on a frazzled hiatus with three young children.<\/p>\n

Kathryn remembers thinking: \u201cOur friends lost their house. We have a baby, and we can\u2019t sleep. Move on!\u201d<\/p>\n

But not long after that, Mike told her he was having a hard time typing with that same right hand. Kathryn agreed that something was wrong. So started a medical journey.<\/p>\n

‘Something is wrong:’ Could it be rare ‘young-onset’ Parkinson’s?<\/strong><\/h3>\n

Mike’s primary-care physician prescribed physical therapy. His fingers stayed uncooperative. Meanwhile, he found himself so exhausted at work that he was taking naps in his car over lunch. Mike had, in his dozen years at Ball Aerospace in Boulder, worked his share of 100-hour weeks in a business known for hard deadlines dictated by celestial mechanics and fixed launch windows. Now he was struggling to plow through half that span despite Kathryn doing the heavy lifting with the newborn and the boys. It got to the point that Mike was wary of driving with the kids in the car for fear he would nod off.<\/p>\n

\"Mike
Mike Whitt learned he had “young-onset” Parkinson’s after struggling for years to figure out what was wrong. Now, he’s feeling much better after getting DBS for Parkinson’s.<\/figcaption><\/figure>\n

\u201cThat\u2019s when I said, \u2018That\u2019s it,\u2019\u201d Kathryn recalled. \u201cSomething is wrong and we\u2019re not going to stop until we have an answer.\u201d<\/p>\n

The hand therapist gave way to a rheumatologist<\/a>, and, ultimately, a neurologist. By then nearly three years had gone by. Mike existed in what he described as \u201ca fog,\u201d and while still able to do his work, was completely depleted by the time he got back to Longmont.<\/p>\n

\u201cHe wasn\u2019t connecting with anyone at home. He was too tired to really laugh or joke or play, and I was going crazy. I had to know what\u2019s going on,\u201d Kathryn said.<\/p>\n

The Whitts read up and reached out. Could Mike have some weird form of Parkinson\u2019s disease? A neurologist said no. Mike was too young, first of all: young-onset Parkinson\u2019s disease affects<\/a> just 2% to 10% of the roughly 1 million people with Parkinson\u2019s disease in the United States \u2013 and \u201cyoung,\u201d in this case, applies to those under age 50. A second neurologist agreed with the first, but, when Kathryn insisted, referred Mike to UCHealth University of Colorado Hospital<\/a> (UCH) on the Anschutz Medical Campus<\/a>.<\/p>\n

Deep brain stimulation or DBS providing new hope and help for Parkinson’s patients<\/strong><\/h3>\n

At University of Colorado Hospital, the Whitts met with UCHealth movement disorder neurologists, who quickly diagnosed Mike with Parkinson\u2019s disease. Annabelle, the baby he couldn\u2019t quite pat three years prior, had started preschool that morning.<\/p>\n

Mike, now 38, started on what would become a changing regimen of medications that eventually added up to as many as 40 pills a day.<\/p>\n

\u201cYou name it, I was probably on it for Parkinson\u2019s,\u201d he said.<\/p>\n

The medications never quite took.<\/p>\n

\"DBS
Mike Whitt had to take as many as 40 pills a day before getting DBS for Parkinson’s. Now he smiles as he holds a container of pills he no longer needs.<\/figcaption><\/figure>\n

\u201cParkinson\u2019s is a \u2018snowflake disease\u2019 \u2013 everybody\u2019s different,\u201d Kathryn said. \u201cA lot of the meds that worked for other people just did not for Mike.\u201d<\/p>\n

As Mike continued to have challenges with medications, he ultimately was referred to UCHealth and University of Colorado School of Medicine neurologist Dr. Drew Kern<\/a>. He recognized that Mike metabolized the drugs quickly, shifting from what Parkinson\u2019s patients describe as \u201con\u201d (functioning closer to \u201cnormal\u201d) and \u201coff\u201d (dealing with tremors, fatigue, sleeplessness, and other Parkinson\u2019s symptoms) quickly and abruptly. After much discussion, together they determined that Mike should consider deep brain stimulation or DBS.<\/p>\n

\"DBS
Dr. Drew Kern.<\/figcaption><\/figure>\n

DBS involves implanting electrodes, typically one on either side of the brain, at targeted locations deep in the brain (favored Parkinson\u2019s targets include the subthalamic nucleus and the globus pallidus interna). A connection wire is then run under the scalp behind the ear to a battery implanted below the collarbone.<\/p>\n

The resulting changes in brain signaling have long been known to diminish Parkinson\u2019s-related tremor,\u00a0rigidity (stiffness), and slowed movement. More recently, neurologists and patients have reported that DBS improved a slew of nonmotor Parkinson\u2019s symptoms, including fatigue, mood, hallucinations, perception, and urinary and sexual complications.<\/p>\n

What was mainly the domain of long-term patients with late-stage disease is now routinely considered for younger patients. The U.S. Food and Drug Administration approvals have borne that out: first approved for Parkinson\u2019s tremor in 1997, that approval expanded to encompass advanced Parkinson\u2019s symptoms in 2002 and, in 2016, to those who have had the disease for at least four years and have motor symptoms that medication can\u2019t adequately control.<\/p>\n

While DBS can do a lot, it\u2019s not a Parkinson\u2019s cure, Kern says, nor does it seem to help with Parkinson\u2019s-related attention and memory problems or gastrointestinal symptoms such as constipation.<\/p>\n

But taken together, Kern says, \u201cquality of life can be improved by 30 to 40%, and that\u2019s what really matters.\u201d<\/p>\n

DBS valuable for Parkinson’s before patients ‘go over a cliff’<\/strong><\/h3>\n

By 2018, the medications weren\u2019t helping. Mike experienced sweeping \u201con\u2019\u2019 and \u201coff\u201d swings \u2013 both of which bode well for DBS success, Kern says. Just as importantly, although Mike had experienced symptoms for five years now, he was still early in the course of disease.<\/p>\n

\u201cWe no longer think about DBS for someone who\u2019s already over the cliff and holding on to a blade of grass,\u201d Kern said. \u201cWe want to implement this before we\u2019ve approached the cliff.\u201d<\/p>\n

\"DBS
Mike Whitt barely had energy to work, much less play with his kids before getting DBS for Parkinson’s. Now, he can join in first games in the yard of “gaga ball,” a combination of four square and dodge ball.<\/figcaption><\/figure>\n

In less metaphorical terms, Kern generally suggests DBS for Parkinson\u2019s patients before they\u2019ve stressed marriages, lost jobs, or missed time with children and grandchildren that they can\u2019t get back.<\/p>\n

Mike was missing time with his children. Even with the medications, what were once routine demands at work left him exhausted at home. The seesawing from those meds left him more or less constantly vomiting or falling asleep. Playing with his kids may as well have been marching up a Fourteener.<\/p>\n

When Kern suggested DBS, the Whitts were enthusiastic \u2013 but surprised.<\/p>\n

\u201cFor the longest time, we knew it was an option,\u201d Mike said. \u201cBut I thought it was a last resort, which isn\u2019t true.\u201d<\/p>\n

Awake during DBS surgery: ‘I could feel my body just relax’<\/strong><\/h3>\n

In mid-2018, he embarked on a process of vetting and preparation for the DBS procedure. Patients must not only be good candidates from a medical perspective, but they also must understand what DBS can and can\u2019t do as well as the procedure\u2019s risks and benefits. Other considerations include having good caregiver support, no overt dementia (which DBS can make worse) and stable mental health.<\/p>\n

The Whitts became well acquainted with the UCHealth DBS team that includes four movement-disorder neurologists, two neurosurgeons, four neuropsychologists, two neuroradiologists, a physical medicine and rehabilitation physician, physical therapists, speech therapists, occupational therapists, and, unique to UCH, a neuropalliative care team led by Dr. Christina Vaughan<\/a>. Vaughan talks patients and families through the changes they can expect through the DBS experience, listens to their concerns, and helps them prepare for what is, for many, a new phase of existence, Kern says. The entire DBS team discusses all patients undergoing evaluation for DBS on a weekly basis, assessing if a patient is a good candidate and determining optimal electrode targets in the brain.<\/p>\n

Mike\u2019s DBS surgery was in fact three procedures spaced about a month apart in November and December 2018 and in January 2019. The first two implanted electrodes on the right and left sides of his brain; the third placed the battery under the skin just below the collarbone. For all three, a movement-disorder neurologist, a neurophysiologist, and a functional stereotactic fellowship-trained neurosurgeon collaborated in planning and performing the first two procedures.<\/p>\n

In Mike\u2019s case, the subthalamic nucleus was the ideal target for the DBS electrodes. Placing those electrodes takes a combination of extraordinary technology, skill, and experience. Patients are generally awake during the procedure: their movements and responses improve targeting and help avoid adverse effects. UCH also does DBS under anesthesia using an MRI-assisted system called ClearPoint<\/a> that combines real-time MRI guidance in the implantation of DBS electrodes.<\/p>\n

Being awake was fascinating, Mike says. Kern and colleagues had him move his limbs as the surgical team listened and watched portions of Mike\u2019s brain respond to those movements. Once the electrode was placed, Mike noticed a difference right there on the table.<\/p>\n

\u201cThey turned it on and I could feel my body just relax. It was the weirdest thing,\u201d he said.<\/p>\n

The last phase of a DBS case involves optimizing the current flowing to the electrodes. That\u2019s a multi-step process in which Kern established a baseline range in which Mike can then adjust.<\/p>\n

Living again<\/strong><\/h3>\n

It\u2019s been nearly two years since that first electrode went in. Many DBS patients drop half or two-thirds of their Parkinson\u2019s medications; Mike is off them all.<\/p>\n

Annabelle, now 7, sees the difference in her dad.<\/p>\n

\"Thanks
Mike Whitt feels like he’s “living again” after getting DBS for Parkinson’s.<\/figcaption><\/figure>\n

\u201cShe talks a lot about the surgery,\u201d Kathryn said. \u201cShe says, \u2018Now daddy doesn\u2019t throw up and sleep all the time. Daddy can play now.\u2019\u201d<\/p>\n

Her brothers Daniel, 12, and Nathaniel, 10, see the difference, too. Mike now goes on bike rides and kicks a soccer ball around with the kids, activities that would have been \u201cinconceivable\u201d a few years ago, as Kathryn described it.<\/p>\n

\u201cIt\u2019s been life-changing,\u201d she said. \u201cWe\u2019re in the really formative years with our kids. It really matters that they get to have their dad back right now.\u201d<\/p>\n

DBS isn\u2019t a Parkinson\u2019s cure, Mike knows, \u201cbut it allows me to do the things that I want to do with my life.\u201d<\/p>\n

Cure or not, DBS couldn\u2019t have come sooner.<\/p>\n

\u201cHonestly it was a straight-up miracle for us,\u201d Kathryn said. \u201cIt has enabled him to experience joy in life.\u201d<\/p>\n

The space engineer put it in familiar terms.<\/p>\n

\u201cIt\u2019s not rocket science,\u201d Mike said, \u201cbut it is brain surgery.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

Mike and Kathryn Whitt\u2019s story is one of determination, resilience, and patient self-advocacy. But foremost, the Whitts hope to convey that deep brain stimulation (DBS) for patients with Parkinson\u2019s disease is far from a last-ditch option it used to be. Their story begins in fall 2013, shortly after catastrophic flooding tore through Longmont. Their home […]<\/p>\n","protected":false},"author":23,"featured_media":36891,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[5],"tags":[563,184,750],"class_list":["post-36885","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-deep-brain-stimulation","tag-neurology","tag-parkinsons-disease"],"acf":[],"yoast_head":"\nYoung rocket scientist gets 'miracle' DBS for Parkinson's<\/title>\n<meta name=\"description\" content=\"After 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