Healthwise
Parkinson’s disease (PD) is a neurodegenerative disorder that progresses as the dopamine-producing (dopaminergic) neurons in the brain become impaired.
These neurons in the substantia nigra – a region in the midbrain – mainly control movement. Their loss, coupled with decreased dopamine, results in tremors (trembling in the hands, arms, legs, and jaw), rigidity (stiffness of the limbs), slowness of movement, and poor balance and coordination. These hallmark symptoms of PD appear in patients with 80 percent or greater loss of dopaminergic neurons in the substantia nigra. Lewy bodies (abnormal accumulation of alpha-synuclein proteins) develop in neurons of people with PD.
Eminent people, including Muhammad Ali, Johnny Cash, Michael J. Fox, and others, have battled Parkinson’s, but there is still not enough awareness about the disease and the endemic PD support groups that can be reached out to.
The prevalence of PD has doubled globally in the past 25 years. In 2019, there were around 8.5 million individuals with PD and the number is increasing. There is no cure for Parkinson’s, but therapies, including medicines that increase the amount of dopamine in the brain, surgery, and rehabilitation, can reduce PD symptoms.
Support groups and societies
Dedicated organizations and platforms internationally catering to Parkinson’s patients and their caregivers regarding resources and support include the National Parkinson’s Foundation, American Parkinson’s Disease Association, Michael J. Fox Foundation, and the Parkinson’s Disease Foundation, among many others.
Parkinson’s Europe has enlisted active Parkinson’s organizations worldwide on their web page. Among the 51 leading nations, South Asia is represented by Pakistan and India; surprisingly there is no resource available from China.
Pakistan is represented by the Pakistan Parkinson’s Society (PPS), operating from DHA Karachi. Recently a Parkinson’s support group meeting, jointly organized by PPS and Aga Khan University Hospital, was held on 25 January 2024, at AKUH’s Physiotherapy Rehab Centre.
Guest speaker Dr. Dureshahwar – who is a neurologist and DBS (deep brain stimulation) surgeon – delivered a talk on ‘Introduction to Clinical Features and Initial Management’. DBS is a neurosurgical procedure that uses implanted electrodes and electrical stimulation to treat movement disorders associated with Parkinson’s disease, essential tremor, dystonia, and other neurological conditions.
PSS
Pakistan Parkinson’s Society (PPS) is a nonprofit society started in the 1980s by Mr. Haroon Bashir, a gentleman who himself had the condition.
It is a free-flow organization, taking onboard caretakers, patients, and doctors. It started very well in the day when it was headed by its founder; doctors and physicians got roles within the society, with some eminent names playing a part in its development. These included Mr. Irshad Jan, one of the directors; Dr. Nadir Ali Syed, the vice chairman; and Amir Pasha, a very experienced director. However, since the death of Haroon Bashir six years ago, PPS has not been able to shine like before.
Ms. Maha Khan, a representative of PPS, was very generous in providing valuable insights on the paradigm of how PPS – the only Parkinson’s support society from Pakistan – is working, what it aims to achieve for the community and what hurdles are impeding the community awareness on PD.
“Today, in Pakistan, it is one of the most increasing diseases, with little or no awareness and many misconceptions regarding symptoms and treatment options,” says Maha Khan.
Regarding misconceptions, she explains, “It is a brain disease and not just a disease of nerves. Not every hand-shaking tremor indicates Parkinson’s; there are mild nerve tremors that must not be mistaken for Parkinson’s. The tremors and handshaking associated with Parkinson’s is a continued state compounded with sleep problems and loss of motor control of hands.
“Also, it is not certainly the disease of old age – onset can be in young people with fluctuating dopamine levels in the nervous system.
“There’s no particular medication to cure this disease. It is an ongoing illness, and it cannot be curbed but can be managed with diet, exercise, and mental health. ”
Treatment advances
Scientists are focusing on the roles of the gut, genetics, and PD disease progression in general to be able to pinpoint effective interventions for the cure of the ailment.
A recent study published in the peer-reviewed scientific journal Neuron highlights the autoimmune effect CD4 T cells may have on the enteric neurons, by attacking the alpha-synuclein, the protein that aggregates in the brains of people with Parkinson’s disease.
Another important study by Dr. Lang’s team highlights the SynNeurGe (pronounced “synergy”) model that focuses on biological factors that contribute to the disease, including the presence of pathologic alpha-synuclein in the brain; evidence of neurodegeneration, which occurs as the disease progresses; and the presence of gene variants that cause or strongly predispose a person to the disease.
Medical advances, alongside raised awareness, give us hope that Parkinson’s patients, both in Pakistan and worldwide, will be able to not only fight the disease but live productive, fulfilling lives.