A Parkinson’s Patient Home-cared Well, Just by His Family
Parkinson’s disease (PD) is a neurodegenerative disorder affecting the dopamine-producing neurons in the brain, upon aging. It is traditionally known by its motor symptoms, such as shakiness and slowness of movement, though its non-motor symptoms such as pain, anxiety, depression and dementia can also affect the quality of life (QoL) of some patients, as the disease advances. Parkinson’s kills brain cells, initially in a hidden manner until the motor symptoms, viz. slow movement, tremors, and muscle stiffness begin appearing with gradual loss of control on movements and speech, and postural deformities, in some cases.
Unfortunately, PD gets diagnosed only after a large number of the brain cells have already been destroyed and the process rendered irreversible. There is no treatment yet known to cure PD or to delay its progression, nor is there a diagnostic chemical test for it. Current medications only bring temporary relief from its symptoms, as for instance, Syndopa Plus tablets which essentially compensate for the lack of dopamine in the brain, for a few hours.
Parkinson’s is caused by the death or degeneration of “dopaminergic” neurons in the brain, i.e. neurons which produce/release the neurotransmitter dopamine, a chemical messenger ensuring communication between the neurons. The culprit for killing the neurons in a patient of PD is a protein called alpha-synuclein, found in the endings of the nerve cells, the main role of which is to regulate the production of dopamine. But, any misfolded clumps of alpha-synuclein damage and even kill the dopamine producing nerve cells. Without dopamine, the signal from the brain would never reach a person’s hand, if he wants to lift a tea cup. Damage to the dopamine system happens increasingly with aging. A steady rise in life expectancy, leading to a rapid growth in the world’s population of people above 65 years, is likely to push the number of PD patients up, in future.
A recent study made in North America has indicated that QoL of the PD out-patients shows improvement after palliative care provided by trained multi-disciplinary team of care-givers, comprising of a neurologist, a social worker, a chaplain, and a nurse.
I wish to highlight the case of a long-time friend, nicknamed CM, a PD patient now for about 18 years, who is being taken care of by his joint family system at his residence, 24x7, and has a reasonably satisfactory QoL. CM is now 81 years of age, and I have known him personally and professionally for 50 years. He retired in 1999, after a very illustrious scientific career at BARC, a large government institution in Mumbai. He had no symptoms then and, therefore, pursued scientific research, post-retirement, at another lab located near his residence in Mumbai. It was in 2002, that he started getting mild motor symptoms of PD, though he continued his research work, nonetheless. The motor symptoms grew gradually with time, forcing him to discontinue his lab work altogether in 2012.
I have been visiting CM, on a regular basis, and always spend an hour or two with him, chatting about our shared past. During my recent visit, I observed that although his motor symptoms have been affected progressively, he can still walk around on his own, eat independently, and is able to sit and participate in discussions. The only deterioration I have observed is a slight slur in his speech over the last two years, but he remains alert and has no perceptible degradation in his memory and cognitive functions. I attribute this to the family support system that he has. He, his wife, her sister, and sister’s husband are all well-educated, retired and now past 65 years of age, living together, under the same roof. His wife retired as a college professor in science subjects in 2002 and her sister in 2014 as a librarian in a research institute. Living together, they don’t have financial worries. Besides, they have a full-time maid, Meena, who has worked with CM’s family for the last 45 years. She was just 10 when CM and his wife engaged her to play with their two children — a son who lives now in USA and a daughter who lives in another town in India, both of whom having their own families. CM being a very kind-hearted person, got Meena married to a suitable groom in 1988, but she continues to tend CM-family with care, leaving them only occasionally to visit her own family, living nearby in Mumbai.
Acceptability of a sick person is highest amongst his/her family, simply due to the existing emotional bonds. The mutual affection and devotion for CM among his family is exemplary. As a simple, spiritual family they hardly notice his Parkinson’s, or talk about it. They have always rejoiced in CM’s professional successes, extended emotional support to him spontaneously, and lived together joyfully, sharing their common values which give them strength to face any hardship. CM-family are minimalists, living frugally. The only fancy of CM is a fast, reliable Wi-Fi signal to surf the Internet for his research interests, and to listen to music of his choice.
CM family is a classic case of informal caregivers serving their kin at home, free. Their only remuneration is the happiness they derive from a frequent smile on CM’s face, which reassures them about his well-being. Luckily, all the three family care-givers are not only retired, but also stay together, without compromising their own health. PD is not a life-threatening disease, and allows long survival rates. The family-care described above has brought definite positive effects on the QoL of CM, and together they may very well manage with his condition for several years more.
All PD patients may not be as lucky as CM to have constant care by family members, but there is hope in several recent positive therapeutic developments which might bring relief, hopefully soon. Gene therapy is being examined as a treatment in future to reduces Parkinson’s symptoms by reorganizing functional brain connectivity. Ambroxol, an active ingredient in cough mixtures has recently shown potential to halt the progression of Parkinson’s, and is being evaluated as a drug. And, Deep Brain Stimulation, a surgically invasive procedure, involving implantation of a pace maker, an extension wire of which is connected to the electrodes to send signals to the brain of a Parkinson’s patient, is also emerging as a treatment protocol.
