Late-Stage Parkinson's Disease: Symptoms and Care Challenges

Parkinson's disease

Hello, Doctor.
My mother-in-law has been suffering from Parkinson's disease for several decades and has undergone deep brain stimulation surgery.
Over the past year, she has frequently had difficulty swallowing saliva, which causes her to keep her mouth open and continuously use a towel to absorb it.
Whenever she is awake, she has her mouth open, and her hands often touch her tongue.
Eventually, this leads to a gagging response (pulling on her tongue), and she only seems to be free from this when she is asleep.
While she is doing this, her eyes often gaze at the ceiling, and her gaze can be unfocused at times, while at other times it appears normal.
Sometimes when we call her name, it seems like she doesn't hear us, as she is intently focused on using the towel to absorb her saliva.
When we ask her questions, she does not respond, and she speaks less than five words a day.
Sometimes it feels like she wants to express something but struggles to articulate it.
I would like to ask the doctor if these symptoms are common in the later stages of Parkinson's disease.
Thank you for your response.

Shou, 30~39 year old female. Ask Date: 2021/09/27

Dr. Hong Weibin reply Neurology

Hello,
It is highly likely that my mother-in-law is in the advanced stages of Parkinson's disease, which has resulted in significant muscle rigidity, including in her facial muscles and swallowing muscles.
As a result, she is unable to close her mouth and has difficulty swallowing saliva on her own.
When I touch her tongue, it may indicate her desire to swallow, as she uses this gesture to express her needs.
My mother-in-law may also be experiencing Parkinson's-related dementia, leading to poor attention span.
We can discuss this further during her next appointment with the physician, as there may be options to adjust her Parkinson's medication.
Additionally, we can prepare a suction device to help her manage excessive saliva.

Best regards,
Hong Wei-bin

Reply Date: 2021/09/27

More Info

Understanding Late-Stage Parkinson's Disease: Symptoms and Care Challenges
Late-stage Parkinson's disease (PD) presents a complex array of symptoms and challenges for both patients and caregivers. As the disease progresses, individuals may experience significant physical and cognitive decline, leading to a range of difficulties that require comprehensive care strategies.

Symptoms of Late-Stage Parkinson's Disease
In the later stages of Parkinson's disease, patients often exhibit a variety of symptoms that can severely impact their quality of life. These symptoms may include:
1. Severe Motor Symptoms: Patients may experience pronounced rigidity, bradykinesia (slowness of movement), and tremors. These motor symptoms can lead to difficulties in performing daily activities such as eating, dressing, and personal hygiene.

2. Dysphagia (Difficulty Swallowing): As you mentioned regarding your mother-in-law, swallowing difficulties are common in late-stage PD. This can lead to drooling, as patients may struggle to manage saliva, resulting in the need for constant care to prevent aspiration and choking.

3. Cognitive Impairment: Cognitive decline is another significant concern. Patients may experience confusion, memory loss, and difficulty communicating. This can manifest as a reduced ability to respond to questions or engage in conversation, as you noted with your mother-in-law's limited verbal communication.

4. Changes in Eye Movement: Patients may exhibit abnormal eye movements or gaze, such as staring at the ceiling, which can be distressing for caregivers. This may be due to a combination of cognitive decline and the effects of the disease on the brain's motor control centers.

5. Emotional and Behavioral Changes: Depression, anxiety, and apathy are common in late-stage PD. Patients may become withdrawn or exhibit changes in mood, which can complicate caregiving.

6. Increased Dependence: As the disease progresses, patients often become increasingly dependent on caregivers for assistance with daily activities. This can be emotionally and physically taxing for family members.

Care Challenges and Considerations
Caring for someone with late-stage Parkinson's disease involves addressing both physical and emotional needs. Here are some considerations for caregivers:
1. Communication: It is essential to maintain open lines of communication, even if verbal responses are limited. Non-verbal cues, such as touch and eye contact, can help convey support and understanding.

2. Swallowing and Nutrition: Due to dysphagia, it may be necessary to modify the diet to include softer foods and thickened liquids to reduce the risk of choking. Consulting with a speech-language pathologist can provide strategies for safe swallowing.

3. Mobility and Safety: Ensuring a safe environment is crucial. This may involve removing tripping hazards, using mobility aids, and providing assistance with transfers to prevent falls.

4. Emotional Support: Addressing the emotional needs of both the patient and the caregiver is vital. Engaging with support groups, mental health professionals, or counselors can provide valuable resources and coping strategies.

5. Palliative Care: As the disease progresses, palliative care may become an important aspect of treatment. This approach focuses on improving quality of life and managing symptoms, rather than curative treatment.

6. Professional Help: Involving healthcare professionals, such as neurologists, occupational therapists, and palliative care specialists, can provide comprehensive support tailored to the patient's needs.

In conclusion, late-stage Parkinson's disease presents numerous challenges that require a multifaceted approach to care. Understanding the symptoms and being proactive in addressing the needs of both the patient and caregiver can significantly improve the quality of life for everyone involved. It is essential to seek support and resources to navigate this difficult journey effectively.

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