Living With Parkinson’s

Overview

This is how Parkinson’s disease manifests. It is a disorder of the nervous system caused by a drop in dopamine levels due to progressive neuron damage leading to the symptoms of Parkinson’s disease. Symptoms usually start with tremors that advance to shakiness, stiffness, slow movement, loss of balance and coordination, eventually making simple tasks like walking and talking difficult.

In later stages of the disease, it’s not uncommon to experience symptoms like dementia and delusions, making it a challenge for the patient and the caretakers both. Since it’s a disease with no cure and with limited treatment modalities, management is a bigger challenge.

With the progression of the disease Mr. Kumar’s condition began to deteriorate. He presented with symptoms like hallucinations and dementia which indicated the possibility of him developing Parkinson’s plus syndrome. Here is where Parkinson’s becomes a huge challenge.

Parkinson’s plus syndrome or atypical Parkinson’s is a group of neurodegenerative diseases featuring the classical features of Parkinson’s disease with a set of additional symptoms that differentiate them from the classical kind.

Parkinson’s plus syndrome presents itself with Progressive Supranuclear Palsy (PSP), Dementia with Lewy bodies, multiple system atrophy and Corticobasal degeneration making Parkinson’s plus syndrome much harder to treat.

With loss of interest in things he previously enjoyed, his behaviour became more erratic. From incidences of wandering to delusions, the family was undoubtedly exhausted. The treatment also became more elaborate leading to dire side effects. Hence Mr. Kumar started taking services from Emoha Elder Care about 6 months back which included a full time nurse and emergency services.

“It all depends on the kind of caretaker. Caretaker Rohit was extremely calm and loving which certainly helped my father” says Vandana. Helping him engage in activities that distract him from negativities, ensuring nutrition and timely medication, a caretaker helped relieve the family stress to some extent. With Emoha’s Care Angels (nurses) and Care Partners (attendants) helping with home treatments, things can be easier for your loved one.

The toughest part of living with Parkinson’s disease is how much it takes away an integral part of oneself. It’s just as much of a battle for the loved ones as it requires immense patience and acceptance from their end. With external help from a trained full-time nurse, family and the right distracting tactics we can help make the course of Parkinson’s disease as well as Parkinson’s plus syndrome smooth. Despite all the difficulties, one learns to count their blessings. “It teaches us the value of living each day in the present, for life is unpredictable. It’s important to live your life and enjoy the littlest things while you can,” says Vandana.

What to do next

• Keep all medicines on a strict timetable. Parkinson's medicines work best when taken at the same times, and a late dose can bring stiffness back; see Parkinson's disease home care guide.
• Ask for a review if there are hallucinations, confusion, falls or severe side effects; do not change doses yourself.
• Make the home safe: clear paths, rails, good light; see bathroom safety for Parkinson's and Parkinson's freezing and falls.
• Stay active: physiotherapy, walking and dance or music help; see exercise for Parkinson's.
• Support eating and swallowing with a speech therapist's advice; see eating with tremor or weak grip.
• Plan for wandering and night-time safety if confusion appears; see wandering and dementia safety.

When symptoms change

Hallucinations, delusions and dementia can appear later in Parkinson's disease, or can signal another condition that looks like it. They need a neurologist's review because some Parkinson's medicines can worsen them. See caring for a parent with Parkinson's and walking aids for Parkinson's.

Caring for the carer

Round-the-clock care is exhausting. Take breaks, share duties and seek support; see caregiver burnout signs and prevention.

When to ask a professional

A neurologist directs medicines. A physiotherapist, occupational therapist and speech therapist help with movement, daily tasks and swallowing. Our care advisors can arrange trained attendants and equipment.