The overlooked impact of Parkinson’s on caregivers and families

“It’s rough now,” says Fathima (name changed) as she battles to find the right words to describe Mohammed Ansur’s current state. Her father, she reveals after some apprehension, is in another room being tended to by his wife and sons. “…his medication wore off and he’s having an attack.” 

Over the last 17 years, dealing with Parkinson’s Disease (PD) has become an integral part of this middle-class Mysuru household’s daily routine. But it got significantly worse over the last few months. Now aged 73 years, Ansur was diagnosed and introduced to medication (levodopa) six years ago. 

Levodopa has been a gold-standard medication for Parkinson’s Disease for over five decades, but it comes with a range of adverse effects, which includes dyskinesia and stiffness as the disease progresses. Dyskinesia is an involuntary, often erratic, bodily movement resembling dance-like movements. 

“Whenever the patient takes the medicine, he becomes ‘on’ and after six hours he becomes ‘off’ where the freezing and other symptoms return until you take the medication again. This goes on for a few years before the medication itself causes complications,” says Dr Pramod Pal, head of neurology at NIMHANS (National Institute of Mental Health and Neuro Sciences) Bengaluru, explaining how levodopa works. 

“Most of the motor symptoms (tremors, freezing etc) dissipate on medication, but the problem is that after around five years of treatment they develop new problems known as dyskinesia.” 

Even simple motions are tough 

In the case of Ansur, until the ‘severe complications’ began to show up, he went about managing the hardware shop he had opened 40 years ago without much discomfort. He slowed with time, but the routine was nevertheless manageable. “Everyone noticed that his speech was slowly fading and the shaking in his hands was obvious, but he didn’t have issues when he started working,” Fathima reminisces. 

“The biggest problem was that he had trouble signing cheques,” she adds. 

As the symptoms worsened, the family had him tested, and the doctors confirmed that Ansur was developing Parkinson’s Disease. They were explained the deteriorating nature of the condition, and that medication would help for a few years before they might have to consider surgery, Fathima recounts. 

Parkinson’s Disease occurs when the brain produces insufficient amount of dopamine, a critical neurotransmitter chemical. To be more specific, substantia nigra is the dopamine-producing region in the midbrain – which controls movement and is also known to play an important role in regulating behaviours. An inactive form of dopamine, Levodopa targets this imbalance in the substantia nigra by getting converted to dopamine in the brain. 

A costly option 

The surgery that Fathima referred to is Deep Brain Stimulation or DBS, and it comes at a hefty price. Dr Pal reveals that a surgery with a rechargeable battery lasting ten to 14 years costs approximately ten lakh rupees. A surgery with a non-rechargeable battery that lasts three to five years costs approximately six lakh rupees. During this period, the patient will continue to take medication, but the dosage reduces drastically, thereby reducing the chances of dyskinesis. 

Even as Ansur’s children gather funds for the surgery on their father, Fathima says that more than the monetary aspect of it, it is the condition that has affected the mental health of her father and the family.
 

“It is imperative that caregivers of people suffering from Parkinson’s Disease take care of themselves just as they do the patient,” says Dr Pal. “This is why we talk to the patients and the caregivers before we start the treatment. We let them know that we won’t do the treatment unless the condition is debilitating the patient. We also let them know that skipping the medication can cause fatal complications. 

“But the toughest part is to tell them that no matter what, unless they do DBS, the symptoms are only going to get worse. It’s tough and that’s why therapy and counselling are essential for the caregivers too.” 

A big load on family 

Besides maintaining basic hygiene and keeping the mood light around the patients, caregivers are asked to monitor the regularity and intake of their wards’ food, and any adverse reactions to medication or food. “They should also make a note of changes in tremors and the duration of tremors,” says Dr Pal. 

Non-pharmacological treatments, involving therapy, yoga, dance music therapy, Tai Chi and the likes, are also introduced to the routine. 

“It’s not easy watching him go from being the pillar of this family and our community to being helped around the home for the most basic of things,” says Fathima, who is an IT professional. “Luckily, money has not been of concern because most of us are earning. But giving him time has become tough. My mother is also old and has age-related complications. She is the only one at home, so she is the one taking care of him through the day. We take over when we finish work. Fortunately, we’re working from home now.” The family may opt for a nurse soon. 

Parkinson’s Disease patients are prone to falling, vitamin D deficiencies, sleep issues, addictions, hypersexuality, anxiety and depression, and in many cases, they also develop psychosis. “You cannot treat Parkinson’s Disease only through medication or surgery,” says Dr Pal. “You need a comprehensive study of the patient and then bring on board psychiatrists, psychologists, sleep specialists, speech therapists and fitness therapists.” 

A centre for caregivers 

NIMHANS plans to start a centre which will teach and prepare the family of a PD case to handle all things that come with dealing with the disease. Dr Pal says, “This is important because caregivers get burnt out and can also develop depression, anxiety and several such psychological issues in due course.” 

It did not bother Ansur’s family members so much whenever he struggled to open a sachet of ketchup; they could help him with such tasks. But they are at a loss how to help him as he now struggles to stand, move, eat, sleep, go to the bathroom and control his movements. 

“We have all had to change our routines to accommodate his needs,” says Fathima. “We all take turns to stay up with him because he doesn’t sleep well. One of us must always keep an eye on him. We have figured it out, but it takes a toll on us. It is like raising a child, only harder.” 

For Ansur, the hardest part is that he knows what his family is going through for his sake. But for his family the goal is to try to stay positive amidst his pain and steady decline.