She had Parkinson's and didn't want to live. Then she got this surgery. (2024)

Pam Peters couldn't take it anymore. She couldn't bring a fork to her mouth to feed herself. Couldn't tie her shoes. Write her name. Put pillows in her pillowcases.

"I didn't want to live with the symptoms I was having," the 64-year-old says, grieving her life before. "It just seemed impossible."

The Port Huron, Michigan, resident was initially diagnosed with essential tremor – a nervous system condition that leads to rhythmic and involuntary shaking, according to the Mayo Clinic. But she ultimately found out she actually had Parkinson's disease in February 2022 at another health system, six years after her symptoms began.

Parkinson's is a progressive neurodegenerative disease that worsens over time and is incurable. Patients lose dopamine-producing brain cells important for normal movement. Symptoms include everything from speech changes to impaired balance and stiff muscles, though severity varies by person. It's the second-most common neurological disease behind Alzheimer's.

"I saw myself declining, and it really wasn't a happy time," Peters says. "I was rather close to not wanting to be here. But that has all changed since my surgery."

Peters underwent deep brain stimulation – a procedure where a doctor implants electrodes into a person's brain. It's advisable for some Parkinson's patients who have an uncontrolled resting tremor respond unpredictably to medication. The electrodes help regulate movement –a game-changer for patients like Peters and others amid the ongoing fight for medical breakthroughs for neurologic conditions.

Parkinson’s arrived in her 20s.Now, she's thankful for a procedure she was once scared of.

"(Parkinson's is) something that people live with every single day," says Dr. Adam Kuhlman,the medical director of Corewell Health’s Movement Disorders Program in Southeast Michigan. "They don't go very long without being reminded that those symptoms are right there, that are impacting their ability to execute daily activities."

She had Parkinson's and didn't want to live. Then she got this surgery. (1)

'We've been able to provide her relief'

Parkinson's is typically treated with levadopa, a dopamine-producing medication. Kuhlman otherwise encourages patients to exercise, get enough sleep and seek out social support. But when medication doesn't result in the desired effects – i.e. in Peters' case – other options enter the conversation. Hence deep brain stimulation, which was first approved about 25 years ago for multiple conditions, including Parkinson's.

Peters had a few, rough painful days after the surgery in November, but saw results right away after Kuhlman activated the electrodes a month post-op.

She had Parkinson's and didn't want to live. Then she got this surgery. (2)

"We've been able to give her and provide her the relief of her symptoms that we would otherwise have been getting with oral medications, but at least for the time being, she's not requiring any oral medications that were causing her so much difficulty," Kuhlman says.

More neurologic conditions:Bruce Willis and my dad received the same aphasia diagnosis. Then everything changed.

Patients will typically follow up frequently within the first six months, then they stretch out to every few months to every six months from there.

As for the future of Parkinson's treatment: "A much more attainable goal is having something that's going to be disease-modifying, that is something that's going to be able to slow down progression. Thus far, we don't have anything that's currently available."

Of course, "sometimes it's discouraging not having something more to offer," he says. "But part of the reason why I got into the field to begin with was that this is something where we're seeing so much more attention, we're seeing so much more funding and so much more research and we're just primed for a breakthrough."

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'I don't want to lose what I have'

Now, Peters is more back to her old self. She ate rice on a fork the other night. She's working out three to four times a week and wants to train for the Senior Olympics in her town.

"It's really been incredibly gratifying for me as her physician to see the turnaround that we've had, and finding the right treatment for her and seeing her go from really seeming to struggle and be kind of down with the whole process, to functioning much closer to the way that she was hoping she was going to and being able to participate in the things that she wanted to participate, especially in terms of being physically active," Kuhlman says.

But most important: Between participating in Parkinson's group therapy and the deep brain stimulation treatment, Peters has hope.

"I can't get every moment in enough," she says. "I can't hug enough babies. I want it all right now. I don't want to lose what I have either."

If you or someone you know may be struggling with suicidal thoughts, you can call988any time day or night,or chat online.Crisis Text Linealso provides free, 24/7, confidential support via text message to people in crisis when they dial 741741.

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She had Parkinson's and didn't want to live. Then she got this surgery. (2024)


How do you know when a Parkinson's patient is dying? ›

There are signs in people with Parkinson's disease that may indicate that the person is at increased risk of dying. These include increased difficulty swallowing, becoming confined to a wheelchair or bed, malnutrition, or complications like aspiration pneumonia or pressure ulcers.

What is the average age of death for Parkinson's patients? ›

UPDRS: Unified Parkinson's Disease Rating Scale, LEDD: levodopa equivalent dose. The mean AAO was 62.0 ± 10.7 years (range: 25–88 years). The mean age of death was 78.0 ± 8.0 years (range 44.6–98 years), with a median survival of 15 years (95% CI: 14.2–15.5 years) for the whole cohort.

What is the most common cause of death in Parkinson's patients? ›

Assessing the characteristics and causes of death in PD can identify high-risk groups of deaths and expand our understanding of PD. Although there are some differences among studies, the leading causes of death in PD were reported to be neurodegenerative disease, cardiovascular disease, pneumonia, and infection (4–6).

Can Parkinson's patients live at home? ›

There are benefits to keeping the person with Parkinson's at home. The environment is familiar (and comforting) to your loved one, and you won't have to travel to see him or her. Despite the challenges of caregiving, the relationship between you and the person with Parkinson's often becomes stronger over time.

What is the last stage of Parkinson's before death? ›

When patients reach stage five – the final stage of Parkinson's disease – they will have severe posture issues in their back, neck, and hips. They will require a wheelchair and may be bedridden. In end-stage of Parkinson's disease, patients will also often experience non-motor symptoms.

What are the strange behaviors of Parkinson's patients? ›

Patients with Parkinson's disease (PD) can experience several behavioral symptoms, such as apathy, agitation, hypersexuality, stereotypic movements, pathological gambling, abuse of antiparkinsonian drugs, and REM sleep behavioral disorders.

When should someone with Parkinson's go into care? ›

A person with Parkinson's may be receiving care at home but moving into a care home may be an option if they are finding it increasingly hard to live alone and manage each day.

What causes a rapid decline in Parkinson's? ›

Health changes – Medical issues are another possible cause of a sudden decline in Parkinson's. These include illness, infection, chronic pain, or even surgery. Such medical issues can also lead to increases in anxiety or stress, worsening Parkinson's symptoms even more.

What are the signs that Parkinson's is getting worse? ›

6 Signs Your Parkinson's Disease Is Progressing
  • Medication not working.
  • Anxiety and depression.
  • Changing sleeping patterns.
  • Involuntary movements.
  • Trouble swallowing.
  • Memory problems.

What time of day are Parkinson's symptoms worse? ›

Parkinson's symptoms can fluctuate throughout the day and worsen during certain periods, such as the early morning or late evening. Often, this is because medications begin to wear off between doses. However, unlike some conditions, Parkinson's disease doesn't cause episodes or flare-ups.

At what stage of Parkinson's does dementia start? ›

Most people with PD start having movement symptoms between ages 50 and 85, although some people have shown signs earlier. Up to 80% of people with PD eventually develop dementia. The average time from onset of movement problems to the development of dementia is about 10 years.

What does the final stage of Parkinson's look like? ›

Patients become stooped as tremors grow more pronounced. Muscles are rigid, making it difficult to bend their trunk, arms, and legs; facial muscles begin to “freeze” at this stage, creating an almost mask-like appearance.

How do you make someone with Parkinson's happy? ›

10 Ways to Support a Loved One with Parkinson's
  1. Educate yourself. ...
  2. Reach out. ...
  3. Check in and chat. ...
  4. Offer to help with appointments. ...
  5. Work alongside the care team. ...
  6. Communicate. ...
  7. Access local resources. ...
  8. Get involved.
Jul 20, 2023

When do you put Parkinson's patient in a nursing home? ›

In clinical practice, a person with PD is often placed in a nursing home (for PD reasons) when PD nonmotor symptoms, such as hallucinations, psychosis, and dementia, occur or motor symptoms (slowness, stiffness, gait, and balance impairment) have progressed to the point that an individual is no longer able to ambulate ...

Is it hard to take care of someone with Parkinson's? ›

Over time, a person with Parkinson's disease may become increasingly dependent on their caregivers. Watching a loved one live with Parkinson's can be painful, but there are ways to help them. Learn what to do, avoid, and how to maintain your own well-being.

What happens when a Parkinson's patient can no longer swallow? ›

Importantly, dysphagia can lead to malnutrition, dehydration and aspiration (when food or liquid “goes down the wrong pipe”). Aspiration, which can be silent (a person does not cough or choke), is a risk factor for aspiration pneumonia — the leading cause of death in PD.

What does stage 5 Parkinson's look like? ›

Stage 5 of Parkinson's Disease

Patients experience advanced stiffness in the legs and may freeze or stumble when attempting to walk. Around-the-clock assistance is needed, and many people require wheelchairs or are confined to a bed. At this stage, dementia also occurs in up to 75% of people with Parkinson's.


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