Misdiagnosed Parkinson's Patient Regains Life After Nph Treatment

At property 66, Richard "Dick" Nash first suspected thing mightiness beryllium incorrect erstwhile he participated successful a Dallas locomotion for juvenile glucosuria successful grant of his granddaughter. "It was only 2 miles – nary large woody – but I wasn't capable to complete it without falling down," he recalled. "My woman had to thief maine backmost to nan car."

After that time successful 2011, Dick's wellness continued to deteriorate. His legs would stiffen involuntarily, his consciousness of equilibrium worsened, and stepping became progressively difficult, if not impossible. The velocity of his beingness movements became noticeably slower overall. Even trying to ore felt sluggish, making mundane connection a challenge.

Eventually he sought retired a neurologist and was diagnosed successful 2016 with Parkinson's disease, a progressive, degenerative upset pinch nary clear origin and nary cure. He began beingness therapy and medication, hoping to regain immoderate of his mobility and cognition.

But thing didn't consciousness correct for Dick.

Even though he had nan hallmark signs of Parkinson's – stiffness, slow movement, mediocre balance, cognitive issues, incontinence – galore of nan treatments didn't look to make a difference. "The symptoms were ne'er consistent," he said.

Determined to find answers, Dick group retired connected a quest to regain his health. Fortunately, he had spent much than 10 years arsenic an security supplier and was acquainted pinch navigating Medicare and nan analyzable aesculapian system. For nan adjacent respective years, he cycled done galore physicians and specialists.

Then his travel led him to UT Southwestern. There, doctors astatine the Peter O'Donnell Jr. Brain Institute identified nan existent culprit: normal unit hydrocephalus (NPH), a uncommon information caused by excess fluid accumulating successful nan brain.

With a dedicated squad of NPH experts down him, Dick underwent nan room he needed to move his wellness around. Within months of receiving nan correct diagnosis, he's regained his beingness independence, his expertise to pass much easily, and precious value clip pinch his family. What started arsenic a grim outlook for nan early has turned into a caller beginning.

What is normal unit hydrocephalus?

Typically seen successful patients complete property 60, NPH is characterized by an excess buildup of cerebrospinal fluid (CSF) successful nan brain. A patient assemblage perpetually creates CSF, cycles it done nan brain, and reabsorbs it. When these processes are interrupted, other fluid accumulates, compressing nan encephalon and impairing its expertise to cleanable itself. This tin lead to progressive difficulties with:

• Mobility, peculiarly stiffness erstwhile walking
• Cognition, marked by sluggish thinking, confusion, and/or forgetfulness
• Urinary incontinence

Unlike emblematic hydrocephalus, wherever patients person a important summation successful unit connected nan brain, patients pinch NPH show small aliases nary unit increases, making nan information harder to detect. Recent world studies propose that NPH affects astir 1.5% to 3% of patients aged 70–77, and much than 6% of those 80 and older, which is considerably higher than nan estimated prevalence of Parkinson's disease. That intends arsenic galore arsenic 1 to 2 cardinal group successful nan U.S. whitethorn beryllium surviving pinch NPH. Unfortunately, only astir 20%-40% are ever diagnosed and person treatment.

Types of normal unit hydrocephalus

NPH is typically divided into 2 categories:

• Idiopathic NPH, wherever nan nonstop origin is chartless but is usually attributed to aging issues that disrupt really CSF is circulated successful nan body
• Secondary NPH, wherever nan CSF disruption tin beryllium traced to different aesculapian information specified as:
  • Head injury
  • Surgery complications
  • Subarachnoid hemorrhage (bleeding successful nan area astir nan brain)
  • Brain tumors
  • Brain infections (such arsenic meningitis)
  • Brain inflammation

NPH received a uncommon boost successful nan nationalist spotlight successful May 2025, erstwhile famed musician Billy Joel revealed his ain test and began treatment.

The hunt for effective treatment

In nan years aft Dick's test of Parkinson's, his unwellness became harder to manage. His limb stiffness worsened until he was mostly homebound. He needed a wheelchair anytime he near nan house. His cognitive deficits besides made it difficult for him to clasp conversations aliases usage nan telephone aliases a computer.

All this took a toll connected his main caregiver, his woman of much than 55 years. "He had fundamentally fixed up," Sharon Nash said. "He didn't want to live. He didn't want to do anything, truthful his muscles had atrophied. He conscionable was not motivated to attraction for himself."

Fortunately for Dick, a regular sojourn to a beingness therapist astatine UT Southwestern to thief pinch his incontinence spurred nan breakthrough he needed.

Like his erstwhile wellness attraction practitioners, pelvic level specialist Michelle Bradley, PT, DPT, WCS initially didn't spot immoderate logic to uncertainty Dick's Parkinson's diagnosis. She began moving pinch him to easiness his symptoms. It wasn't until Dick arrived for a later assignment successful a wheelchair that she suspected thing other mightiness beryllium going on. "He told maine he had a process a mates of days earlier that required valium. Since then, he'd had awesome trouble walking," she said. "Knowing valium does not origin specified a speedy and long-lasting decline, I was concerned."

The adjacent clip she saw Dick, his information had worsened. Even for Parkinson's, specified a accelerated alteration successful a short play of clip was different and raised a awesome reddish flag. "I was truthful concerned that I walked pinch him to nan beforehand and asked that Mr. Nash beryllium scheduled pinch a neurology master arsenic soon arsenic possible," she said.

For nan first clip successful years, Dick felt personification genuinely saw what he was going through.

The first steps to an NPH diagnosis

Dick initially met with Vibhash Sharma, M.D., Medical Director of nan Interventional (Neuromodulation) Movement Disorders Clinic astatine UT Southwestern. After a thorough evaluation, Dr. Sharma ruled retired Parkinson's.

Even though Dick's legs would frost up and origin him to fall, he had not developed different conditions accordant pinch nan disease. His medicine for levodopa, a modular Parkinson's medicine that boosts dopamine levels successful nan brain, appeared to person nary effect connected his symptoms. A past DaT scan (Dopamine Transporter Scan) likewise grounded to show beardown grounds of Parkinson's.

Based connected a caller MRI scan and his ain objective exam, Dr. Sharma referred Dick to nan NPH group astatine UT Southwestern.

The correct squad for nan correct diagnosis

In February 2024, Dick had his first assignment pinch UT Southwestern's dedicated NPH team. The interdisciplinary group includes Padraig O'Suilleabhain, M.D., a neurologist specializing in movement disorders, and Jeffrey Schaffert, Ph.D., a objective neuropsychologist specializing successful dementia syndromes.

While immoderate neurologists brushwood NPH done their objective practice, UT Southwestern has taken a much focused attack by forming a dedicated interdisciplinary squad to tackle imaginable NPH cases. By combining their expertise, nan squad members tin place subtle signs of NPH much easy successful patients, streamline care, and hopefully bring clarity to a notoriously ambiguous condition.

Given Dick's symptoms and past testing, nan squad was not peculiarly amazed that Dick had received a Parkinson's diagnosis. As they group to activity unraveling his extended aesculapian history and performing their ain evaluations, however, they noted moreover much grounds of NPH.

Clinical symptoms

They studied his movements. "His stepping trouble had what we telephone 'magnetic gait,' wherever nan inclination is for his feet to benignant of instrumentality to nan crushed arsenic though location were magnets successful his shoes," Dr. O'Suilleabhain explained. "It's a classical gait complaint, and it had deteriorated complete nan people of 10 years aliases so."

His antagonistic DaT scan and nan truth that he hadn't responded to levodopa concerned Dr. Schaffert. "If a diligent gets a batch amended [on levodopa], that would beryllium much suggestive of Parkinson's successful galore cases," he said. "The truth that he didn't get amended raises a yellowish emblem of 'what other could we beryllium dealing with?'"

Dick's fluctuating symptoms besides added to nan imaginable grounds for a caller diagnosis. "It's surely communal for group to consciousness their encephalon operating otherwise astatine times, some physically successful position of really they locomotion and cognitively successful really intelligibly they're thinking," Dr. O'Suilleabhain said. "Sleep, caffeine, humor pressure, and moreover nan upwind tin person an effect. Parkinson's symptoms tin alteration successful severity arsenic neurons are lost, but nan variety successful CSF outflow that NPH causes produces a akin effect."

Imaging

Based connected his scans, nan ventricles successful nan mediate of Dick's encephalon had enlarged a important amount, apt caused by excess CSF and reduced outflow, which tin disrupt connection betwixt nan encephalon and legs.

There besides was grounds of disproportionately enlarged grooves successful nan brain, which happens erstwhile CSF is trapped successful those spaces. On scans, this tin look for illustration encephalon shrinkage, which whitethorn person contributed to Dick's earlier misdiagnosis.

CSF drains

One cardinal item nan squad noted was that Dick had already completed 2 lumbar spinal taps complete nan people of his illness. During these procedures, a mini needle aliases catheter is inserted into nan little backmost to region fluid astir nan spinal cord. Draining a ample magnitude of CSF tin sometimes relieve symptoms and assistance successful nan diagnosis, though a deficiency of consequence does not norm retired NPH. But for Dick, nan results were inconclusive.

The NPH test gap

Unfortunately for patients pinch NPH, first misdiagnosis is common.

Unlike cognitive conditions that tin beryllium identified by definite markers, NPH lacks a definitive trial (for example, encephalon scans of Alzheimer's patients typically show a buildup of a macromolecule called amyloid, which forms structures that disrupt normal encephalon functions). Multiple wellness issues tin further muddy nan waters. Patients typically acquisition CSF testing, lumbar drains, medication, and perchance room earlier their physicians scope a definitive test of NPH.

The aesculapian organization seems to beryllium catching connected that NPH could beryllium much prevalent than antecedently thought. Researchers successful Sweden studying encephalon MRI scans from astir 800 70-year-old patients found 1.5% pinch grounds of NPH (an earlier study besides revealed a significantly higher prevalence among those complete property 80).

This is 1 of nan main reasons specialists astatine UT Southwestern person mixed their expertise. "We're trying to beryllium much systematic astir really we make an NPH determination," Dr. O'Suilleabhain said. While lumbar drains proceed to beryllium a facet successful diagnosis, nan squad hopes to move distant from specified invasive testing to a much streamlined array of cognitive and mobility tests.

The squad besides hopes to amended methods for distinguishing NPH from different conditions and foretell curen consequence by analyzing proteins successful CSF and blood. As main investigator, Dr. Schaffert helped move nan investigation programme guardant importantly by securing $1.2 cardinal successful funding: "We were capable to leverage our objective pathway into important investigation efforts. We look guardant to launching much precocious imaging, biomarker collection, and longitudinal follow-up for our patients this year."

One past trial to corroborate NPH

To thief find adjacent steps, nan NPH squad projected Dick acquisition 1 much CSF drain on pinch a lumbar infusion test, a overmuch much extended diagnostic process not offered by galore clinics.

Dick was admitted to William P. Clements Jr. University Hospital, wherever a lumbar drain was placed connected him for 4 days straight. Every 4 hours, doctors would drain 20 milliliters of CSF, fundamentally removing half of what his assemblage produced and forcing nan brain's fluid systems to reset. Dick reported immoderate improvement, but for illustration his erstwhile drain tests, nan results weren't definitive.

During nan aforesaid infirmary visit, however, doctors besides performed a lumbar infusion test, which uses real-time sensors to show intracranial unit (ICP) and actively measurement really good CSF flows and is absorbed by nan brain. Dick's ICP became elevated during infusion and took a important magnitude of clip to lower.

That result, on pinch imaging and objective symptoms, provided capable grounds to diagnose Dick pinch NPH and support nan proposal of installing a shunt. There were nary guarantees nan shunt would thief – and it would require room and perchance attraction aliases replacement room down nan roadworthy – but it was still nan champion chance for Dick to get backmost connected his feet.

After discussing nan process pinch neurosurgeon Jon White, M.D., a day was set.

Relieving nan encephalon pressure

On Aug. 1, 2024, Dick arrived astatine the Clements University Hospital for surgery.

In Dick's eyes, this was his past changeable to regain nan life he'd had earlier his illness. "I decided if this room didn't work, I was going to state hospice," he said. After years of setbacks and uncertainty, he was fresh to move guardant aliases fto go.

That day, Dick had 2 surgical teams – 1 to instal a ventriculoperitoneal shunt into his skull and different to link it to a drain successful his abdomen. The shunt was inserted into nan brain's ventricles, wherever nan fluid appeared to accumulate nan most. For nan 2nd portion of nan procedure, a long, bladed conduit was connected to nan shunt and threaded done his cervix and thorax to nan peritoneal cavity, a abstraction successful nan abdomen that houses digestive organs.

Once nan procedures were completed, nan shunt would enactment arsenic a alleviation valve, opening to merchandise CSF erstwhile nan unit successful his ventricles sewage excessively high. The CSF would past travel down nan conduit into his abdomen to beryllium absorbed by nan body. Once nan unit returned to a normal range, nan shunt would adjacent again, stopping nan travel of CSF. This way, nan fluid unit would stabilize, and nan brain's discarded removal strategy would beryllium restored.

Though shunts person been shown to amended functionality successful NPH patients, their wide effects connected cognition and mobility are still unclear. UT Southwestern precocious participated successful a randomized controlled objective trial involving aggregate sites successful nan U.S., Canada, and Sweden to trial nan effectiveness of shunting – nan first proceedings of its benignant successful nan world. By knowing its afloat effects, doctors dream to find which patients are apt to benefit.

From NPH to rebirth

Most patients pinch NPH don't spot a important quality for weeks aliases moreover months aft a shunt is installed. For Dick, nan alteration was almost immediate.

Just 1 time aft surgery, he did thing he hadn't done successful years: He sewage retired of furniture and counted arsenic he took 250 steps pinch a walker. "It was nan furthest I'd walked successful six months," Dick said. "I'd shown up for nan room successful a carrier wheelchair, truthful stepping that overmuch was a large deal." This was, rather literally, his biggest measurement guardant successful years.

Describing nan room arsenic his "day of rebirth," Dick has been wished to enactment healthy. More than 1 twelvemonth later, he walks astir 3 miles regular and has regained overmuch of nan functionality he thought he'd mislaid forever. At 80, he's capable to do much than he could almost 10 years ago. "I tin run successful nan room now," he said. "I tin spell retired erstwhile group induce maine to time off nan house. Sharon and I spell retired erstwhile we want to spot a movie." The brace are moreover readying to recreation internationally later this year.

As portion of his recovery, Dick began reside therapy, which helped him regain nan socializing he'd mislaid during his illness. According to Sharon, "One of nan things that happens erstwhile you person an unwellness for illustration he had is you go isolated. And nan much isolated you become, nan much cognitive deficits you develop. He's conscionable truthful overmuch better. Now he's capable to converse pinch group and do a batch of things that he conscionable wasn't capable to do earlier his room and earlier nan therapy."

Other symptoms person faded, too, including nan incontinence that inadvertently put him connected nan way to healing. "I don't deterioration what we telephone 'traveling pants' anymore," Dick said. "I besides reduced my medicine by astir 60% – sewage free of a batch of pills I don't request anymore."

Of everything he's gained complete nan past year, though, nan astir meaningful has been moments pinch his family. He's astir proud of spending much value clip pinch his young great-grandsons and is grateful for those who helped him get there. "Dr. Schaffert, Dr. White, and Dr. O'Suilleabhain are heroes because they did what was necessary," Dick said. "They listened to me."

After his ain experience, Dick said his main dream is that NPH will summation much nickname successful nan aesculapian community, truthful others tin get nan curen they request to regain their lives.

"Miracles do happen," he said. "And I was nan beneficiary of a miracle."