Parkinson's disease: Its symptoms, causes and management

Photo illustration by Pornpak Khunatorn, iStock/Getty Images Plus

By Dr. Zain Guduru

University of Kentucky

Parkinson's disease is a progressive neurological disorder that affects movement. Named after Dr. James Parkinson, who first described it in 1817, this condition currently affects millions of people worldwide. While there is no cure for Parkinson's disease, understanding its symptoms, causes and management strategies can significantly improve the quality of life for those living with the condition.

What is Parkinson's disease? PD primarily affects the brain's nerve cells responsible for producing dopamine, a neurotransmitter involved in movement regulation. As these cells degenerate or become impaired, dopamine levels drop, leading to the characteristic symptoms of PD.

Symptoms of Parkinson's disease:

• Tremors: Involuntary shaking, usually starting in the hands or fingers.
• Bradykinesia: Slowed movement and difficulty initiating movement.
• Muscle rigidity: Stiffness in the limbs or trunk, causing difficulty with movement.
• Postural instability: Impaired balance and coordination, leading to falls.
• Non-motor symptoms: These can include depression, anxiety, cognitive changes and sleep disturbances.

Causes of Parkinson's disease: The exact cause of PD remains unknown, but it's believed to involve a combination of genetic and environmental factors. Some potential factors that may contribute to the development of PD include:

• Genetic mutations: Certain genetic mutations have been linked to an increased risk of Parkinson's disease.
• Environmental factors: Exposure to toxins like pesticides, herbicides and heavy metals may increase the risk.
• Age: The risk of Parkinson's disease increases with age, typically affecting individuals over the age of 60.
• Brain changes: Abnormal protein deposits in the brain, such as alpha-synuclein, are associated with Parkinson's disease.

Managing Parkinson's disease: While there is no cure for PD, several treatment options can help manage its symptoms and improve quality of life:

• Medications: Dopamine replacement medications, such as levodopa, can help alleviate motor symptoms.
• Physical therapy: Exercise programs designed to improve flexibility, balance, and mobility can be beneficial.
• Speech therapy: Speech therapists can help with communication difficulties often associated with Parkinson's disease.
• Deep brain stimulation: In advanced cases, DBS surgery may be an option to help control motor symptoms.
• Lifestyle modifications: Eating a balanced diet, staying physically active, and managing stress can all contribute to better symptom management.

Parkinson's disease is a complex condition that requires a multidisciplinary approach to management. While there is no cure, early diagnosis and appropriate treatment can significantly improve the quality of life for individuals living with PD. By raising awareness, supporting research, and implementing effective management strategies, we can work towards a better understanding and treatment of Parkinson's disease.

Zain Guduru, M.D., is a neurologist with the Kentucky Neuroscience Institute and assistant professor in the University of Kentucky College of Medicine.

Louisville's Norton Healthcare receives $20 million gift to support Parkinson's disease programming and research

Norton Healthcare has received a $20 million gift for the "Just Imagine" campaign to support programing and research in Parkinson's disease and movement disorders at the Norton Neuroscience Institute.

 
The Just Imagine campaign aims to ensure greater access to medical expertise; expand innovative clinical translational research; and recruit, train and attract even more best-in-class specialists.

The gift comes from the estate of Dr. Elizabeth Pahk Cressman, a Louisville anesthesiologist who died in 2021.

“Dr. Cressman’s vision has helped elevate the care for Parkinson’s patients, helping to create a nationally known program through Norton Neuroscience Institute,” Lynnie Meyer, senior vice president and chief development officer of Norton Healthcare, said in a news release. “She also was the catalyst behind funding Parkinson’s disease research that already has helped transform the lives of many patients and families through access to more groundbreaking treatments.”

Cressman worked at what is now Norton Women’s & Children’s Hospital, while her husband, the late Dr. Frederick K. Cressman, was a pathologist for Norton Healthcare. This latest gift brings Dr. Elizabeth Cressman’s total support of initiatives at Norton to $28 million.

Nearly 1 million Americans have Parkinson’s disease, and that number continues to grow. The movement disorder generally develops in people 55 to 75 with the main symptom being bradykinesia, or slowness of moment. It also can cause tremors and muscle stiffness.

“Parkinson’s disease can be extremely debilitating and, unfortunately, there currently is no cure,”  Dr. Justin T. Phillips, movement-disorders neurologist with Cressman Parkinson’s & Movement Disorders Center, said in the release. “With Dr. Cressman’s generosity, we are able to build upon the work we already do and offer even more options for patients. She has already had a great impact on people with Parkinson’s in our community, and that will continue for years to come.”

Breaking the stigma: ADHD can make rejection feel even worse

Joshua Claytor lives with ADHD. (Photo via Kentucky Lantern)

By Sarah Ladd
Kentucky Lantern

Sitting in high school classes was “always a struggle” for a young Joshua Claytor. He filled his papers with “doodles.” Certain math concepts eluded his understanding.

Despite these early signs, it took the Vine Grove man decades to learn he had attention deficit hyperactivity disorder, or ADHD.

When he was diagnosed last year at the age of 42, some things about his life started to make sense.

He realized that “quirky” things about his character were actually part of his ADHD: Fixating on a hobby for a few months, then never touching it again. Taking rejections hyper-personally. Getting ready for work one moment, and realizing the next that too much time had passed and he was already late.

All these symptoms, from time blindness to rejection sensitive dysphoria (RSD) are common but often-ignored parts of ADHD, therapists who treat it said.

 
What is ADHD? Where does it come from?

The Centers for Disease Control and Prevention says ADHD is among the most common neurodevelopmental disorders, and almost always appears by the age of 7, with elementary school helping to reveal inattentiveness, according to Johns Hopkins University.

Often characterized by forgetfulness, daydreaming and carelessness, among other symptoms, the disorder affects millions around the country. Time blindness, too, is common in the ADHD brain, experts said, often making people who have it late to events.

“It’s really hard to manage time, to have an accurate sense of time, to have a good kind of internal guess of how long something is going to take or how long it’s been that you’ve been working at something,” Brenda Arellano, who specializes in treating ADHD, said. “That’s a really difficult thing for a person with ADHD to keep track of.”

Therapy can help people with ADHD become more aware of time and resolve other symptoms of the disorder. But ADHD’s causes are unknown, and the CDC says scientists want to find out if things like brain injury, low birthweight and exposure to alcohol or tobacco in utero can lead to it.

Like many other mental health conditions, people often misunderstand and stigmatize ADHD. For example, there’s this idea that ADHD is “caused by bad parenting,” said Arellano, who works at Well Kentucky.

But it’s just not that simple.

“Certainly, environment plays a factor,” Arellano said. “But it’s not something that’s going to be caused by bad parenting or eating too much sugar or watching too much TV or anything like that. Certainly those things might not help with your ADHD, but it’s not like that’s the reason why you have it.”

 
Different types of ADHD

A person with ADHD may be predominantly inattentive, predominantly hyperactive/impulsive – or have both presentations, Arellano said.

ADHD on television usually looks hyperactive or impulsive, Arellano said. “We often see it as … a little boy that’s just bouncing off the walls. Super, super energetic. Can’t sit still for a second. … And it certainly can be that way, but it also can be much more than that.”

People with hyperactive ADHD can struggle with impulse control, regulating frustration and balancing long and short-term goals, Arellano said. They may end up with more broken bones and traffic tickets than other people, or appear to talk more than average.

Inattentive folks may get distracted easily and struggle with time management. These challenges have “big impacts” on school and meeting deadlines at work.

Males are more likely to be hyperactive/impulsive or both, while females are more likely to be inattentive, Arellano said, though anyone can have any sort of presentation.

Males also are more likely to get diagnosed, she said. That may be because it’s easier for teachers and parents to spot disruption than daydreaming as an issue.

But there is a misconception that people with ADHD lack the ability to pay attention. That’s just not true, according to licensed clinical social worker Sarita E. Trawick.

“The people that have ADHD often can actually hyper-focus on something that they’re interested in,” said Trawick, who sees clients in Kentucky and Oregon.

Pairing an activity or area of interest with the boring or difficult task can help, she said.

Calling ADHD “dopamine deficit” may be more accurate, she said. That’s because “Boredom is like death to someone who has ADHD.”

Dopamine serves as a “reward center,” according to the Cleveland Clinic, and is also called the “feel-good hormone.” People with ADHD may not have enough dopamine — or too much.

 
Is ADHD ‘curable’?

Talk therapy and medications like Adderall can help manage ADHD symptoms.

And while it’s not clear if it’s curable, people can learn to manage symptoms with these treatments.

Some people do appear to “grow out” of ADHD as they get older, according to Arellano, who primarily works with youth.

But the “jury’s out” still on why that happens — and it’s not true for everyone. ADHD may also appear to fade with age for those who look for careers that play to their strengths and not their weaknesses.

“If you’re somebody who has a really hard time staying in their seat, it doesn’t make sense that you’re going to grow up and get an office job where you have to sit in a chair still for eight hours,” Arellano said. “You might do something that has a little bit more interaction or where you can move.”

In that case, she explained, it’s not that ADHD went away. The person is simply playing to their strengths.

The condition “is manageable,” Arellano said. “We can learn to work with the way that a person’s brain is wired and we can seek out situations and environments and supports that … (don’t) hold the person back from showing their intelligence and their other talents.”

 
Stigma of seeing yourself as flawed

ADHD, to Claytor, often felt like a “punchline,” a “joke,” especially in high school.

“We didn’t really talk about ADHD being a real mental illness,” he said. That made it difficult to recognize and address symptoms.

Even now, he struggles when he reflects on past events and realizes how much his ADHD-related rejection sensitivity disorder (RSD) has affected his life. It even forced him to give up dating, he said.

For years he took rejection as a personal attack on his value, making him lash out at perceived attackers.

“To look and see that you didn’t have to defend yourself, that you overreacted, that you hurt people that you cared about. It’s hard to confront,” Claytor said. “It’s hard to face … because it’s embarrassing.”

You must “relive that hurt and having to learn to not only hope for forgiveness from the person that you’ve hurt, but also to forgive yourself,” he said.

RSD can happen to people with ADHD because, Arellano said, the brain may hyper-focus on one thing — something a person said or did — and may overanalyze it. The person with ADHD may even blame themselves for the real or perceived rejection.

“It can be really hard to move on from that,” she explained. “Folks with ADHD have a hard time with regulating emotions, so their feelings can be more intense and it can be hard to work through and cope with those feelings.”

Because ADHD can hinder a person’s ability to focus or cause them to hyper-focus, it can be difficult to separate symptoms from the individual who has them — both for that person and those around them, Arellano explained.

“You’re seeing yourself as, like, ‘I’m stupid’ or ‘I’m a bad student’ or ‘I don’t like school’ or ‘I’m a bad friend,’” she said. “All of those thoughts that really have more to do with your ADHD than with you are going to make it really difficult for you to show up as your full, true, authentic self.”

That negative messaging and feedback can start at a young age, Trawick said.

“Think about how, on a daily basis even, hour to hour, how much feedback you might get about yourself not being like everyone else,” she said. “If you carry that over time, you’re constantly waiting for you to get in trouble or waiting for you to do the wrong thing and then be rejected.”

Think of the child who’s kicked out of class, out of school. Who’s told they can’t come over to a friend’s house anymore because they’re too hyper.

That’s a “lot of rejection” for kids with ADHD to endure, Trawick said.

It impacts how they interact with the world.

“How do you … demonstrate that you’re a good friend if you forget appointments … you forget things, you forget to show up. You can’t pay attention. You forget what they told you because memory is an issue,” Trawick explained. But: “what, often, people forget is that: That’s the friend that if you call them, they’ll be right over. They’ll drop everything to do something for you.”

 
Changing the narrative

Arellano teaches her clients to change how they speak about their ADHD and separate it from their sense of self, which she said is a key part of therapy.

For example, her clients learn to say: “I’m a smart kid. I know what I’m doing. I’m very knowledgeable. I’m actually a pretty good student. And I have ADHD and I procrastinate sometimes and that really bites me in the butt.”

Or: “I’m a very considerate person, and my ADHD sometimes wants me to interrupt people, and that’s something I’m working on.”

The way movies and television sometime depict the disorder makes it easy to generalize and stigmatize the disorder too. There is this image, Arellano said, that people with ADHD are “dumb” or “airheaded.”

In fact, “The research that’s out there that looks at folks with ADHD and their intelligence shows that they’re either average or even above average intelligence,” she said. “So this potential idea that might be floating out there that folks with ADHD are dumb or lazy or unmotivated is just simply not true and not supported by the research.”

‘There’s definitely hope’

Claytor uses a technique called “body doubling” to help cope with his ADHD symptoms. He has an “ADHD buddy” who stays on the phone with him so they can complete things together like cleaning or dishes.

Sometimes just having someone around, even virtually, helps him focus. He knows he can’t go back in time to high school and get a do-over knowing that he has ADHD. He’s in therapy and strives to make his life better now and in the future.

He wishes he could tell his younger self: “Hey, it’s going to get better and there are tools that you can use” to make sure of it.

That, and: “There’s definitely hope.”

 
Could I have ADHD? Signs to look for:

Experts say people with ADHD may have trouble focusing on just one thing and may take rejection hyper personally, among other symptoms.

Other symptoms of ADHD include: 

• Distractedness
• Forgetfulness
• Excessive talking
• Deep connection with music
• Entrepreneurial leanings
• Storytelling skills

You can find Kentucky therapists who specialize in ADHD here.

University of Kentucky acupuncturists explain how their procedure can help relieve pain if medication and therapy don't

By Dennis Kim and Norah Charles
University of Kentucky

Acupuncture involves the insertion of needles on specific points of the body. In Eastern terminology, it helps stimulate the flow of chi, which is the life force, along the meridians of your body.

In Western terminology, it helps send nerve fibers to the spinal cord, brainstem, the hypothalamus and pituitary gland. These fibers help release neurotransmitters such as endorphins, the body's natural painkiller, along with enkephalins plus norepinephrine, which helps inhibit the nerve pain fibers to suppress pain.

An acupuncture procedure (PeakStock/iStock/Getty Images Plus photo)

Acupuncture is non-medication. If a patient is having a condition that is not responding to medication, and they're not recovering fully with physical therapy or other kinds of therapy, we're sometimes able to make progress with acupuncture. We find that we get a lot of referrals from medical doctors who are trying to help patients, mostly with acute and chronic pain, find alternatives to medication.

The most common conditions that we treat with acupuncture in our clinic are musculoskeletal issues such as fibromyalgia, myofascial pain, carpal tunnel and arthritis. These, and other conditions that are treated here, involve neck pain, low back pain or any type of musculoskeletal issues.

The first session of acupuncture involves asking a lot of questions of the patient. Patients usually come in with a primary complaint and the acupuncturist needs details about what brought them into the clinic. The provider will usually go through questions involving other aspects of their health, such as health history, sleep, digestion and mood. This helps the provider develop a better diagnosis from the acupuncture perspective.

Another benefit of trying acupuncture is multiple conditions can be treated at once. If a patient presents with insomnia and also low back pain, those do not need to be separate treatments. We spend time talking with the patient at the beginning of the session to get an idea of what's going on with them in a whole health manner.

The acupuncture session lasts for about 20 to 30 minutes with the needles in, and follow-up sessions are scheduled as needed.

Acupuncture's benefits are cumulative. A patient who comes in with low back pain may notice relief after one session, but they will notice increased relief after more sessions. Everyone's body is different, and resukts depends on the condition, but we ask patients to give acupuncture three sessions to see if we can make any headway with their condition.

Dennis Kim and Norah Charles are licensed acupuncturists with UK HealthCare Integrative Medicine and Health.

'Understanding autism: A KET Forum' premieres June 27

Autism, which is a complicated and often misunderstood neurological and developmental disorder, will be the subject of a forum on KET at 8 p.m. ET Tuesday, June 27 and on KET2 at 9 p.m. ET Thursday, June 29. The program will be available on demand at KET.org and the PBS app.

Kelsey Starks will host "Understanding Autism: A KET Forum" with experts including doctors, therapists and those affected by what some call "a neuro-difference" to help viewers understand how individuals with autism learn and interact with the world around them. They will also discuss education opportunities and the need for early intervention, and suggest ways to navigate the resources available. The studio guests will be:

• Dr. Gregory Barnes, director of the Norton Children’s Autism Center in Louisville and chair of the Kentucky Advisory Council on Autism

• Dr. Marisa Toomey, developmental pediatrics specialist at UK Children’s Hospital in Lexington

• Melanie West, executive director of Families for Effective Autism Treatment of Louisville

• State Rep. Tina Bojanowski, a special-education teacher in Jefferson County Public Schools and parent of a child with autism

• Scott Brinkman of Louisville, attorney and parent of a child with autism, and former state representative and state Cabinet secretary

• Susan Mills of Lexington, founder and executive director of the nonprofit My Autism Tribe and parent of child with autism

• Tanya Sturgill, autism resource specialist with the Fayette County Public Schools.

The program will also include recorded interviews with Kentuckians who live with autism or work in the field:

• Donovan Blackburn, director of the Appalachian Valley Autism Center in Pikeville

• Cody Clark, Louisville-based autistic adult/creator of “Cody Clark Magic”

• Mary & Kris Vaughn of Prospect, parents of a 16-year-old son with autism

• Patrick Elias, a Western Kentucky University senior and participant in the university’s Kelly Autism Program

• Michelle Elkins-Burckhard, director of WKU’s Kelly Autism Program

• Drew Hardison, participant in the LifeWorks transitional program at WKU

• Joy McAlpine, participant in LifeWorks

• Sarah Webb, participant in LifeWorks

• David Wheeler, executive director of LifeWorks

Parkinson's disease: What to know about it, what to do about it

By Dr. Julia Stasich, Ochnser Health

Parkinson’s disease is named after James Parkinson, the English physician who described this degenerative disease of later life. Here are the history, symptoms, causes and treatment options for Parkinson's.

What characterizes Parkinson’s disease?

• Slowness of movement with slow, shuffling gait, short steps
• Rigidity or stiffness of the limbs and trunk
• Impaired balance and coordination
• Head held forward, and body stooped forwards
• Drooping eyelids, open mouth, drooling

What are some of the biggest misunderstandings seen in Parkinson’s disease? Not all Parkinson’s patients have tremor, and Parkinson’s disease does not shorten lifespan, but the symptoms can affect quality of life.

Who first identified Parkinson’s disease? The disease we call Parkinson’s was known to ancient eastern Indians as “Kampavata.” A man by the name of Charaka is known to have described this disease as “kampa” meaning shaking and “vata” meaning decreased muscle movement or weakness. About 500 years later in Greece, Galen, a student of Hippocrates, also described a “shaking palsy.” But it wasn’t until the 1800s when Dr. Parkinson described the criteria of patients with the “shaking palsy” and separated out other diseases that may shake or have weakness. We actually still call the syndromes that look like Parkinson’s disease by the name “Parkinsonism.”

What are the brain changes we see in Parkinson’s disease? Parkinson’s patients experience a slow, progressive loss of cells that make dopamine in the brain. Dopamine, in the right amount and right places, plays a vital role by making our bodies move faster, including arms, legs, mind and even bowels. It also makes us feel good when it is released, like during social events, eating or sex. It is also released as a reward during events such as fishing, hunting, shopping or gambling.

What are the early signs of Parkinson’s? Early Parkinson’s disease is easy to miss by doctors because the symptoms can mimic common ailments:

• Feeling “dizzy” or easily off balance
• Loss of sense of smell
• Loss of arm swing on one side of the body
• Daytime sleepiness
• Depression
• Constipation

What are some of the symptoms of Parkinson’s disease? As the disease progresses and more dopamine-producing cells are lost, more symptoms arise and may include muscle stiffness, tremor, choking and excess saliva.

What causes a loss of dopamine? We don’t know. Certainly, there are familial forms of Parkinson’s, but these are much less common than the sporadic type.

How do we treat Parkinson’s disease?

• Promote the release of dopamine
• Replace dopamine with medication
• Alternatives/additions to dopamine treatment
• Deep brain stimulation surgery

What you can be doing to increase your own dopamine levels? You can do this through regular exercise such as dancing, walking or activities such as Tai Chi. You will also feel better if you sleep better and are well-rested. Massage makes everyone feel good, but there is research that suggests that massage may reduce the symptoms of Parkinson’s disease. A loving, supportive relationship improves both lives, but the Parkinson patient may even notice improved physical effects.

What your doctor can do for you to help increase dopamine? We can directly replace that dopamine with a dopamine precursor, Levodopa. Levodopa was found to be effective in the 1950s by a Swedish scientist, Arvid Carlsson, who later won a Nobel Prize for that work. It is now available in several formulations and is always paired with carbidopa to help absorption.

We can mimic dopamine with drugs called “dopamine agonists.” Pramipexole, ropinerole and rotigatine patch are all in this category.

We can limit the breakdown of your own dopamine using drugs belonging to a family called the MAO-B inhibitors. Two examples are selegiline and rasagiline.

As with some medications, there can be side effects, so be sure to talk to your doctor about a treatment plan that is going to be right for you.

Beshear's medical cannabis order takes effect, but access for most isn't easy; prospect of legislative action remains unclear

USA Today map adapted by Kentucky Health News; data from Marijuana.procon.org

By Al Cross
Kentucky Health News

People with a medical provider's statement saying they have at least one of 21 specified medical conditions can now possess up to eight ounces of marijuana for medicinal purposes in Kentucky, if they bought it legally in another state, under an executive order issued by Gov. Andy Beshear that took effect Jan. 1.

But for most Kentuckians, exercising the new right is not convenient, because cannabis is not legal in any form in Indiana and Tennessee, and the medical-cannabis laws of Ohio and West Virginia do not apply to out-of-state residents.

Missouri and Virginia have passed laws to legalize cannabis for recreational use, but the Missouri law is not expected to take effect until at least February, and Virginia is not expected to have cannabis dispensaries until next year, reports Joe Sonka of the Courier Journal. That leaves Illinois.

Asked about that at his year-end press conference, Beshear said, "The executive order isn’t going to make it convenient for anyone . . . What it will ensure is that they’re not a criminal" if they qualify and have eight ounces or less, the amount that is otherwise a misdemeanor in Kentucky. Beshear's order uses his pardon power to prevent prosecution of those who qualify.

"I don't want them to have to drive to Illinois, but that takes an act of the legislature," Beshear said. "I want our people to be able to get it close to home."

It is unclear what the Republican-controlled General Assembly will do in reaction to the Democratic governor, who is on the ballot this year. The state Senate has twice refused to move medical-cannabis bills passed by the House, so there is some feeling that the bill should start in the Senate this time, but Senate Majority Floor Leader Damon Thayer, R-Georgetown, says it should start again in the House.

That does not suit Rep. Jason Nemes, R-Louisville, the sponsor of those two bills. "This is a Senate question; it is no longer a House question,: Nemes said Jan. 1. "There's no reason to go through the House again, becase that would delay the prospect of the bill." The current session is a short one, with only 30 legislative days, unlike the 60 days in even-numbered years.

Beshear said Thursday that Kentucky law-enforcement officers would have by Jan. 1 a palm card instructing them how to handle cases in which they find eight ounces or less of marijuana (any more would be a felony) possessed by someone authorized to possess it under the executive order.

The medical provider's written certification must include their medical license number, a statement of a the provider-patient relationship, their diagnosis of the qualifying medical condition, and their dated signature. It must also have the provider's and patient's names, addresses and phone numbers.

The 21 qualifying conditions are including cancer, HIV or AIDS, multiple scleroisis, muscular dystrophy, epilepsy, intractable seizures, intractable pain, severe and chronic pain, severe arthritis, neuropathy, Parkinson's disease, fibromyalgia, glaucoma, Crohn's disease, sickle-cell anemia, post-traumatic stress disorder, hepatitis C, cachexia (wasting syndrome), Huntington's disease, amytrophic lateral sclerosis (Lou Gehrig's disease) or another terminal illness.

Covid-19 can cause psychological problems; UK case is an example, and also of surgery that can prevent epileptic seizures

From left: Sally Mathias, M.D.; Aleina Milligan; her sister Kelly Milligan, the patient; Farhan Mirza, M.D., and Timothy Ainger, Ph.D. (University of Kentucky photo by Pete Comparoni)

By Hillary Smith

University of Kentucky

Aleina and Kelly Milligan of Columbia are more than sisters; they are truly best friends. For Kelly, her older sister has been a lifeline during the past two years.

“I was so excited when she decided she wanted to move down here because I thought, ‘This is awesome! I’m going to get to have my sister,’” Aleina said. “And then she got so sick.”

Kelly has dealt with seizures her entire life. She lived and worked in a sheltered employment program in Michigan and had worked as a custodian for 29 years. After experiencing some health issues while at work and after their mother passed away, Kelly decided to move in with her sister.

“She had no support system in Michigan, and it was just too much,” said Aleina.

But Aleina became concerned when she noticed a change in Kelly’s seizure patterns, so they came to see UK HealthCare’s Dr. Sally Mathias, an assistant professor of neurology who specializes in epilepsy.

“When I first saw her, I knew we needed to know more,” Mathias recalled. “She had never had some of the basic testing that is required for epilepsy, so we started off with that.”

The fact that Kelly’s seizure patterns had changed stood out to the epilepsy specialist, but that wasn’t all. “What is very rare is that her heart was actually stopping with every seizure — it is called ‘ictal bradycardia’,” said Mathias. “We noticed that on the Epilepsy Monitoring Unit. The longest her heart stopped while she was in our hospital was 20 seconds.”

To explore this further, they sent her home with a heart monitor for a few weeks. While at home, the heart monitor detected 30 seconds when Kelly’s heart had stopped.

“This was very serious and needed immediate attention,” said Mathias. “We directly admitted her to cardiology, and she got a pacemaker.”

Kelly was shocked to learn about what was happening with her body. This was all new for Aleina, but as they learned, she more says it did start to make sense.

“I was with her several times and experienced when she would just drop,” Aleina said. “There was one time I kept looking at her and thought ‘She is not breathing … surely not though, she must be breathing.’ After we found this out, I’m like, ‘OK, she wasn’t breathing.’ We are very fortunate that nothing has happened, and her heart continued to restart.”

After receiving her pacemaker, the next step for Kelly was epilepsy surgery, something she had never considered before meeting the doctors at UK HealthCare.

“It still baffles me that no one ever did basic testing for epilepsy on her, and that when I discussed epilepsy surgery with them, it was the first time they had heard of it,” said Mathias.

In August 2020, Dr. Farhan Mirza, assistant professor of neurosurgery and director of epilepsy surgery, successfully did surgery on Kelly’s brain. For the first time, she or her sister can remember, Kelly was seizure-free.

“We could go places and not have to go through the thought process of ‘What if?’” said Aleina. “For example, I had been thinking it would be wonderful to visit the beach and go swimming, but I was always afraid to get her in the water, because, what if she dropped?”

Mirza said, “Kelly's journey, like so many of our patients with refractory epilepsy, highlights two important things: No one should have to suffer from uncontrolled epilepsy for decades, and all patients who are resistant to anti-epileptic medications deserve to be evaluated for possible surgical options in a timely fashion. This can be done effectively only at highly specialized centers like UK where we offer advanced multi-disciplinary care for refractory epilepsy.”

The sisters were thrilled to have a greatly improved quality of life as Kelly celebrated her 50th birthday complete with a crown and a sash, less than two months after her epilepsy surgery.

“She was not limited anymore, and that is fantastic,” said Aleina.

Second chapter: Just weeks after celebrating her 50th birthday, two and a half months after her brain surgery, Kelly contracted Covid-19. She started showing symptoms about a week after Aleina came down with the virus. As Aleina recovered, Kelly’s symptoms worsened.

“She started telling me that she was having these strange neurological symptoms – tingling, burning, rushing feelings in her hands and feet, and continuous thoughts that she could not control,” said Aleina. “Kelly had never had any mental problems other than minor anxiety.”

After a few months of feeling like they could finally enjoy life together, Aleina was again reaching out to doctors with great concern for her sister.

“I read some articles about studies looking at the possibility that Covid can attack the weakest part of a person,” said Aleina. “I just assumed that would be her brain because she just had this major surgery.”

At that point, Covid-19 was still relatively new. Aleina says the doctors she spoke with did not know much about the virus other than to tell her that if Kelly’s breathing was okay, then she was okay.

“She continued to get worse … her brain, the tingling,” said Aleina. “It never presented in her lungs, but she just kept acting more strangely. She would say she was on fire and that she felt there was something evil after her.”

Kelly does not remember much of that time, and Aleina says that's a good thing. After about 10 days, Aleina took her to their local emergency department because she was afraid her sister was having another seizure. She wasn’t, though she had a fever and a low level of sodium.

The sisters continued to live like this for several more days and found themselves in the midst of the holiday season. Kelly continued to have a growing feeling that something was invading her body and mind. She then ended up back in the hospital with pancreatitis, which doctors attributed to her Covid-19 infection. Then just a few days after Christmas, Kelly tried to harm herself, and she was admitted to Eastern State Hospital.

“She was in full-blown psychosis,” said Aleina. “She was hallucinating and thought she was being told to harm herself or us.”

Her neurology doctors “were very concerned for her, but at that time there really were not any reports of COVID harming anybody mentally,” Aleina said. “They just didn’t know if it could be related.”

After three weeks at Eastern State, Kelly returned home on some medication that helped a little while, but quickly took a turn for the worse.

“She had gotten so bad … she was no longer my sister,” Aleina said. “It was horrible.”

Kelly was not eating. She would not communicate. Then, she began abusing her medications.

“I got ahold of Dr. Mirza and Dr. Mathias, and I was very honest with them and begged them to get her in for an appointment,” said Aleina. “I said, ‘I don’t know what is going on, but something is wrong, and she is going to die if we do not figure this out.’”

Drs. Mirza and Mathias, and neuropsychologist Timothy Ainger met with Kelly and decided that she couldn’t be sent back home. They knew right away that something was not right because she had undergone a neurocognitive evaluation as part of her pre-surgical workup, and the new results were much different.

“It is a very comprehensive evaluation of your cognitive abilities and how well your mind is functioning,” Ainger said. “She had gone from being talkative, engaged, and polite to being terrified, psychotic, and reserved.”

Her epilepsy doctors, Mirza and Mathias, had seen this surgery done successfully on so many patients and knew that this reaction was not typical. Mathias recalled, “We were naturally thinking, ‘Okay, what else is going on?’”

They said they felt good about Kelly’s surgery, but also knew that these issues occurred not long after it.

“She was doing great from a procedure perspective and didn’t have any issues,” said Mathias. “After surgery, some issues can develop. So that is what we were thinking … Maybe it wasn’t entirely because of the surgery … but I did have that in the back of my mind, because I can’t exclude that.”

The doctors also said operating on that area of Kelly’s brain wasn’t a likely cause for the type of psychiatric symptoms she was having. When Ainger looked through Kelly’s medical notes and history, he discovered the culprit.

“It then became very obvious,” Ainger said. “Right after she had just come out of the acute Covid illness, she had this rapid and sudden onset of symptomology. It was very similar to what the literature has been suggesting in the few cases that existed and very similar in one or two other patients that we had treated.”

They treated Kelly's case as some form of Covid-induced encephalitis, swelling of the brain, starting immunoglobulin therapy and changing one of her seizure medications.

“Within one week, my sister was back,” Aleina recalled. “She was still medicated with the anti-psychotic medication, but she was Kelly again.”

Since then, Aleina says they have been able to back Kelly off from 20 milligrams of her antipsychotic medication to one milligram.

“We completely believe we are going to be able to have her off that completely very soon,” Aleina said. “She is doing great. It has been a real journey.”

In the course of a year, Kelly has been on a roller coaster with her health: a dramatic brain surgery to rectify seizures, a bout of ovid-19, the development of psychosis, and then - thanks to intervention - back to normal and seizure-free. Through all those ups and downs, she and her sister are thankful for the team at UK.

“Because of the way this team works together, it was not six months, nine months, or even 12 months of working with other hospitals and dealing with referrals,” said Ainger.”We were able to just walk into each other’s offices, have meetings, and get this managed right away. That is not the kind of service people get from hospitals that don’t have multidisciplinary teams like this.”

In this case, the teamwork even went outside of the neurology department – it also included cardiology, considering Kelly’s prior heart issues and pacemaker.

“This one was different and a lot of cross-functional teamwork, but we do this for every patient,” said Mathias. “We come together to help our patients especially when they are going through such difficult times.”

Thanks to their teamwork and dedication, Kelly and Aleina are now finally getting to enjoy living in the same place.

“I’ve got her back and so now we can grow old together,” said Aleina. “I’m kind of already there, but we are so looking forward to it.”

“Kelly's story is truly one of years of anguish, a glimpse of seizure freedom, a calamitous decline, followed by a complete recovery,” said Mirza. “We are thrilled to see her faring so well and are honored to have been a part of Kelly and Aleina's inspirational journey.”

Louisville doctor has possible cure for rare brain disease of Iranian woman, who gets visa after CJ story

UPDATE, Aug. 13: "U.S. officials in Armenia granted Marzieh Taheri, 61, the exemption on Monday, just hours after her son sent them links to the Courier Journal's initial article about her plight and subsequent coverage by other media," the CJ reports.

A Louisville doctor has found what may be the first treatment to repair a rare, debilitating brain condition that can eventually lead to death, and has said he would treat a 61-year-old woman from rural Iran who needs it, but she's from a country that's on the U.S. travel restriction list and her visa application is jumping through hoops, Caitlin McGlade reports for the Louisville Courier Journal.

Marzieh Taheri and son Mehran Jafari
 (Photo provided to Courier Journal)

Marzieh Teheri suffers from a condition called radiation necrosis, which developed after she received treatment for a tumor on her ear about three years ago. McGlade reports that the tumor is gone, but because of a condition that affects 10 percent of patients who get radiation therapy on their heads, brain tissue has died, which has "distorted her brain." Until recently, there has been no hope of a cure.

But that changed after Dr. Shervin Dashti, a neurosurgeon at Norton Healthcare, recently found what may be the first treatment to repair the brain indefinitely without any side effects, McGlade reports.

Dashti told McGlade that it's like half of Taheri's brain is "on fire." He has offered to treat her at the Norton Neuroscience Institute, but won't be able to until the U.S. government approves her visa.

The Trump administration set travel restrictions on people from Iran, North Korea, Venezuela, Libya, Syria, Somalia and Yemen that were upheld in June by the U.S. Supreme Court. The administration says the restrictions are needed to be able to properly vet people from these countries trying to enter the U.S.

McGlade reports that on a case-by-case basis, "People traveling to the U.S. from these countries may get waivers if they can show that denying the visa application would cause them 'undue hardship,' that they are not a threat to the United States, and that their visit would be in the U.S. national interest, according to a September 2017 White House proclamation."

The State Department "asked Taheri to list every country she traveled to in the past 15 years, detailing where she stayed, specific locations visited, how she paid for it and length of visit.The office also asked for previous passport numbers; names and birth dates of all immediate relatives; a list of her addresses for the past 15 years; all phone numbers, email addresses, social media accounts, including messaging apps; and her job history. Her daughters compiled and sent a mountain of documents."

Taheri told McGlade that she is optimistic she'll get a waiver, since the proclamation cites urgent medical care as grounds for eligibility. However, McGlade reports that critics call the restrictions discriminatory because most of the countries on the list are Muslim-majority, and Trump said he wanted to ban Muslims during his campaign.

Dissenting Supreme Court Justice Stephen Breyer has also questioned the waiver program's legitimacy, "citing the small number of waivers granted, lack of transparency and a sworn affidavit from a former consular officer who called the process "window dressing,"" McGlade reports.

A lawsuit has also been filed this year by dozens of people impacted by the ban asserting that the "government is denying or stalling virtually all waiver grants and hasn't given consular officials discretion to grant them," McGlade writes.

McGlade writes that the agencies have yet to file formal responses, but a State Department website disputes that claim. It notes that 1,246 visa applicants have been cleared for waivers as of July 31, 2018.

McGlade reports that the State Department won't say how many of the current visa applicants are from the affected countries, but a June letter to Sen. Chris Van Hollen, D-Maryland, said they had approved waivers for just 2 percent of applicants from Muslim-majority countries in the ban.

"Out of 27,129 applicants who could possibly get a waiver, only 579 had been cleared as of April 30," she reports.

Taheri applied for her visa in June. Dashti told McGlade that everyday Taheri gets weaker, and that she is "circling the drain."

"It is agony to place my faith in a process that I know might be fraudulent, but I have no choice," wrote her son, Mehran Jafari, who now lives in Georgia. "My mother’s life could be saved by 30 minutes of surgery, and I must do everything in my power to get her to Louisville."

He added, "I don't know how my 60-year-old mom who was in the United States three years ago can pose a national security threat. If someone like my mom can pose a threat . . . how safe do Americans feel now? If a 60-year-old kind-of disabled woman can jeopardize your safety . . . this is just not America."

UK researchers track genetic trail of ALS, one version of which is more common around Cumberland Gap than anywhere else

Debby Taylor and Dr. Edward Kasarskis talk at the headquarters
of Cumberland Gap National Historical Park. (Alex Stilz photo)

Two University of Kentucky researchers are on the genetic trail of amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease. Their detective story has not reached its end, but it is told in fascinating fashion by Eric Boodman of Stat, the medicine-and-science publication of The Boston Globe.

The story is based around the Cumberland Gap, where Kentucky meets Tennessee and Virginia. "This corner of Appalachia runs thicker with a particular form of inherited ALS than almost anywhere else," Boodman reports, and its chief tracker is Dr. Edward Kasarskis, the neurologist who discovered the cluster, beginning with one family in 1993. A family member on her deathbed told him of a relative who knew "the whole family history," Kasarskis told Boodman, but she "just refused to talk to me."

"He tried to piece it together himself, making calls, jotting names and dates on bits of paper," Boodman writes. "Families were tight-lipped, though, and he didn’t have much luck. He turned to other things." But a decade later, he mentioned his quest to UK research coordinator Debby Taylor, who had been "mapping her own family history on Ancestry.com, and she offered to try with software what hadn’t worked by hand. Within a day, she had 12 pages of names." How, it has "grown into a 250-page digital family tree, with around 6,700 names, eight generations, two intertwined families, and a lot of ALS."

Now, "Taylor and Dr. K know that among the 5,000 annual diagnoses of ALS in the U.S., only around 10 percent are inherited. They know there are over 30 different major genes in which a mistake might be causing the disease. They know that the mutation they’re studying is among the rarer ones, affecting a gene called FUS. What they still don’t know is why certain family members with the mutation get the disease, and others don’t." Kasarskis cited a man who lived into his 90s, had then gene, and never developed the disease -- but three of his children did, and two others got the gene from him.

Though they have a roadmap, the research is slow. They "can’t just look up an address and show up at someone’s door. “Until they develop an illness and come to medical attention, they’re just a name on a chart, on a pedigree,” Kasarskis said. “We can’t legally go doing cold calls: ‘Hey, George, how’s it going? By the way, have you developed your ALS yet?’” So they must "wait for patients to come to them," Boodman reports. "They don’t ask about participating in research right away; there is no cure for ALS, and the diagnosis can be devastating. . . . Some people don’t trust Taylor and Dr. K. Others don’t see how this research could possibly help them. Yet others simply refuse to accept the diagnosis."

Taylor told Boodman, “If you tell your fiancé that there’s ALS in your family, do you think he or she is really going to marry you? So this is not anything that people want to talk about.” But enough of them talked to Boodman to make a great story. Read it here.

U of L therapy provides hope for victims of movement disorder

A neurologist at the University of Louisville has developed a rehabilitation program for functional movement disorder, a recently defined condition manifested by unusual, involuntary movements or body positions. It is one of only a few in the nation, and has a high success rate, says a news release from U of L Physicians.

Kathrin LaFaver, director of the Parkinson’s Disease and Movement Disorders Clinic at the university, modeled the Motor Retraining Program after one at the Mayo Clinic. It combines neurological treatment, psychological counseling, and physical and occupational therapy during a week-long inpatient therapy that aims to improve patients’ motor symptoms, help them regain control over abnormal movements and develop better coping skills.

Kathrin LaFaver, M.D.

“Functional disorders are in the borderland between neurology and psychiatry, and there is a lack of treatment programs for the conditions,” LaFaver said in the release. “Diagnostic tests do not reveal a cause for the FMD, so patients experiencing symptoms often are told by neurologists that ‘nothing is wrong,’ and may be referred to a psychiatrist.”

FMD patients often complain of fatigue and difficulties with concentration and thinking. The disorder can be triggered by psychological or physical stress or trauma, and is not revealed in traditional imaging or other diagnostics, the release says.

Patients from 25 states have undergone the therapy at UofL. More than 85 percent of patients have shown improvement in their symptoms after one week of treatment, and 69 percent report the improvement of symptoms was maintained after six months, the release says.

One was Julia Semple of Delaware, who "spent 10 years trying to figure out what was wrong," the release says.

“It started with my head sort of twitching back and forth, like when you shake your head ‘no.’ It was completely involuntary,” Semple explained. “It progressed to other areas of my body over time. You know when you relax and you have a little twitch? Imagine that except a hundred times bigger and over and over again so you could never fall asleep. It was horrible.”

The disorder "interfered with Semple’s sleep as well as her work as a massage therapist and dancer," the release says. "Semple experienced significant improvement during her week of intensive therapy tailored to her individual needs and symptoms."

Semple said, “After a decade of people telling me ‘take a vacation,’ or ‘there is nothing wrong with you,’ the care at UofL and Frazier was the best ever. Everyone – whatever their part was – they really cared. . . . All of my life was wrapped up in trying to manage these symptoms. The treatment literally gave me my life back.”