Parkinson’s Disease: Living a life without losing hope

As regular readers may be aware, my father was diagnosed with Parkinson’s Disease about 5-6 years back and it was because of this disease that they made the move to Bengaluru. In the last two months, when he was with me in Singapore, I saw closely how it has impacted him and so decided to find out more about this disease.

Parkinson’s disease is an age-related degenerative brain condition that is a chronic and progressive movement disorder that causes parts of the brain to deteriorate, causing more severe symptoms over time. It initially causes tremors in one hand, stiffness, balancing problems or slowing of movement. Symptoms start slowly. The first symptom may be a barely noticeable tremor in just one hand. Tremors are common, but the disorder may also cause stiffness or slowing of movement. While this condition is best known for how it affects muscle control, balance and movement, it can also cause a wide range of other effects on the senses, thinking ability, mental health and more.

The exact cause of Parkinson’s disease is still unknown but it is believed that environment and genetics play a role. Certain medications, toxins and other diseases can produce symptoms similar to Parkinson’s disease, and then it is known as secondary Parkinsonism, which may be reversible. The condition isn’t curable, but there are many different treatment options. In the early stages of Parkinson’s disease, the face may show little or no expression. The arms may not swing when one walks and speech may become soft or slurred. Parkinson’s disease symptoms worsen as the condition progresses over time. As the disease progresses, people may have difficulty walking and talking and patients may also have mental and behavioural changes, sleep problems, depression, memory difficulties, difficulty in swallowing, chewing and speaking, rinary problems or constipation, skin problems and fatigue.

While virtually anyone could be at risk for developing Parkinson’s, some research studies suggest this disease affects more men than women. It’s unclear why, but studies are underway to understand factors that may increase a person’s risk. One clear risk is age: Although most people with Parkinson’s first develop the disease after age 60, about 5% to 10% experience onset before the age of 50. Early-onset forms of Parkinson’s are often, but not always, inherited, and some forms have been linked to specific alterations in genes. Parkinson’s disease symptoms may vary from person to person. Early signs may be mild and may go unnoticed. Symptoms often begin on one side of the body and usually get worse on the same side, even after symptoms begin to affect both sides. Signs and symptoms may include tremors, trembling of hands, arms, legs, jaw and face, stiffness of the arms, legs and trunk, slowness of movement, poor balance and coordination and speech difficulty.

The most prominent signs and symptoms of Parkinson’s disease occur when nerve cells in the basal ganglia, an area of the brain that controls movement, become impaired and/or die. Normally, these nerve cells, or neurons, produce an important brain chemical known as dopamine. When the neurons die or become impaired, they produce less dopamine, which causes movement problems associated with the disease. Scientists still do not know what causes the neurons to die. People with Parkinson’s disease also lose the nerve endings that produce norepinephrine, the main chemical messenger of the sympathetic nervous system, which controls many functions of the body, such as heart rate and blood pressure. The loss of norepinephrine might help explain some of the non-movement features of Parkinson’s, such as fatigue, irregular blood pressure, decreased movement of food through the digestive tract, and sudden drop in blood pressure when a person stands up from a sitting or lying position. Many brain cells of people with Parkinson’s disease contain Lewy bodies, unusual clumps of the protein alpha-synuclein. Scientists are trying to better understand the normal and abnormal functions of alpha-synuclein and its relationship to genetic variants that impact Parkinson’s and Lewy body dementia.

The symptoms of Parkinson’s and the rate of progression differ among individuals. Friends or family members may be the first to notice changes in someone with early Parkinson’s. People with Parkinson’s disease often develop a Parkinsonian gait that includes a tendency to lean forward; take small, quick steps; and reduce swinging their arms. They also may have trouble initiating or continuing movement. Symptoms often begin on one side of the body or even in one limb on one side of the body. As the disease progresses, it eventually affects both sides. However, the symptoms may still be more severe on one side than on the other. Many people with Parkinson’s disease note that before experiencing stiffness and tremor, they had sleep problems, constipation, loss of smell, and restless legs. While some of these symptoms may also occur with normal ageing, patients must talk with their doctor if these symptoms worsen or begin to interfere with daily living.

Some cases of Parkinson’s disease appear to be hereditary, and a few cases can be traced to specific genetic variants. While genetics is thought to play a role in Parkinson’s, in most cases the disease does not seem to run in families. Many researchers now believe that Parkinson’s results from a combination of genetic and environmental factors, such as exposure to toxins.

There are currently no blood or laboratory tests to diagnose non-genetic cases of Parkinson’s. Doctors, mostly neurologists, usually diagnose the disease by taking a person’s medical history and performing a neurological examination. Imaging tests — such as an MRI, ultrasound of the brain and PET scans — also may be used to help rule out other disorders. Imaging tests aren’t particularly helpful for diagnosing Parkinson’s disease. If symptoms improve after starting to take medication, it’s another indicator that the person has Parkinson’s. Sometimes it takes time to diagnose Parkinson’s disease. Healthcare providers may recommend regular follow-up appointments with neurologists trained in movement disorders to evaluate conditions and symptoms over time and diagnose Parkinson’s disease. Several disorders can cause symptoms similar to those of Parkinson’s disease. People with Parkinson’s-like symptoms that result from other causes, such as multiple system atrophy and dementia with Lewy bodies, are sometimes said to have Parkinsonism.

Although there is no cure for Parkinson’s disease, medicines, surgical treatment, and other therapies can often relieve some symptoms. Medicines can help treat the symptoms of Parkinson’s by increasing the level of dopamine in the brain, affecting other brain chemicals, such as neurotransmitters, which transfer information between brain cells, and helping control non-movement symptoms. The main therapy for Parkinson’s is levodopa. Nerve cells use levodopa to make dopamine to replenish the brain’s dwindling supply. Usually, people take levodopa along with another medication called carbidopa. Carbidopa prevents or reduces some of the side effects of levodopa therapy — such as nausea, vomiting, low blood pressure, and restlessness — and reduces the amount of levodopa needed to improve symptoms.

For people with Parkinson’s disease who do not respond well to medications, doctors may recommend deep brain stimulation. During a surgical procedure, a doctor implants electrodes into part of the brain and connects them to a small electrical device implanted in the chest. The device and electrodes painlessly stimulate specific areas in the brain that control movement in a way that may help stop many of the movement-related symptoms of Parkinson’s, such as tremors, slowness of movement, and rigidity.

Other therapies that may help manage Parkinson’s symptoms include physical, occupational, and speech therapies, which may help with gait and voice disorders, tremors and rigidity, and decline in mental functions, a healthy diet to support overall wellness, exercises to strengthen muscles and improve balance, flexibility, and coordination, massage therapy to reduce tension and yoga and tai chi to increase stretching and flexibility. Lifestyle interventions such as exercise, healthy eating, sleep, social activity and stress management can also help manage symptoms.

While the progression of Parkinson’s is usually slow, eventually a person’s daily routines may be affected. Activities such as working, taking care of a home, and participating in social activities with friends may become challenging. Living with Parkinson’s disease can be challenging but there are ways to manage it and live a healthy life.

Some ways patients with Parkinson’s disease can manage their lives include eating healthily, exercising which may increase muscle strength, flexibility and balance, avoiding falls, occupational therapy which can help in day-to-day activities such as eating foods, reading, dressing up patients and speech therapy which helps in evaluating and treatment of voice, speech, language or swallowing.

Parkinson’s disease itself isn’t fatal but related complications can reduce life expectancy by 1 to 2 years. However, research involving more than 12,000 people indicates that Parkinson’s can reduce life expectancy if a person receives a diagnosis before the age of 70 years. The researchers report that those with Parkinson’s disease and normal cognitive function appear to have “a largely normal life expectancy”.

Poem: Summer Holidays

Growing up in India, May was the time when almost all schools closed for the summer holidays. In the school I studied in, school unofficially ended around mid-April and the next two weeks were spent marking papers and preparing report cards. We used to go back to school sometime around the end of April and collect our results for the year before we officially ended the school year on May 01. And almost immediately after collecting our results, we would go to visit our grandparents.

Summer Holidays

The train tickets are booked, and the bags are packed
Food has been cooked and entertainment all sorted
The sun shimmers brightly with all the cacophony and the babel
There’s excitement in the air, coz it’s time to travel

The train is bursting to the seams, excitement is at its peak
Some passengers have an air of mystique
A day and night pass by, at times swiftly and otherwise as slowly as lichen
And then, finally, its time to deboard and start the vacation

Grandparents, cousins, aunts and uncles
All gathering together in one place in a gathering that is annual
Playing together, catching up on family lore and gossip
It’s a chance to make sure the cup of love and friendship runs over

The mangoes are ripe and the litchis are sweet,
The watermelons are juicy and the jackfruits are grand,
The guavas are fragrant and the papayas are plump,
And the food is a feast for the senses.

You make memories to last a lifetime
That you bring out to reminiscence in your downtime
The long nights when you could not end conversations
The short days that seem to wax and wane in fortunes

All too soon, its time to head back home
Go back to a routine, the daily humdrum
But the memory of the summer vacation
Made the year go by, so you can go on the next one

The summer holidays are precious times
A time to celebrate life, love, and happiness,
To be grateful for all that we have
To give and take, to hold and to share

International Day of Families

Today is the International Day of Families. Families are the basic unit of society and play a critical role in shaping individuals and communities. A Family is the smallest and the primary focus of human attachment, nurturance and socialisation. All the lessons of life are learnt from the family and these stay on the psyche for the entire life. Family, which comes from the Latin, familia, is a group of people related either by consanguinity or affinity. The purpose of the family is to maintain the well-being of its members and society. Ideally, families offer predictability, structure, and safety as members mature and learn to participate in the community.

United Nations declared in 1993 that 15 May would be the International Day of Families to raise awareness of the importance of families and to promote family-oriented policies and programs. The day is an opportunity to recognise the importance of families and to promote their well-being. It also aims to raise awareness of the challenges faced by families and to encourage the adoption of policies and programs that support families.

The theme for the 2022 edition was Families and Urbanisation. Urbanisation is one of the most important megatrends shaping the world and the life and well-being of families worldwide. Sustainable urbanisation is related to the achievement of several Sustainable Development Goals and targets that depend on how well urbanisation is managed towards benefitting families and enhancing the well-being of all generations living in cities. The theme thus aims to raise awareness of the importance of sustainable, family-friendly urban policies.

The world is becoming increasingly urbanised. According to the United Nations, 55% of the world’s population currently lives in urban areas, and this number is expected to reach 68% by 2050. Urbanisation has many benefits, such as access to better healthcare, education, and job opportunities. However, it also presents challenges for families, such as higher living costs, limited space, and a lack of social support.

One of the biggest challenges facing families in urban areas is housing. In many cities, housing is becoming increasingly unaffordable, forcing families to live in small apartments or even on the streets. Another challenge facing families in urban areas is the lack of social support networks. In traditional, rural communities, families often have access to extended family members, neighbours, and community organizations that provide social and emotional support which may be unable in urban areas. Despite these challenges, families in urban areas also have unique opportunities for growth and development.

Preparations for the thirtieth anniversary of the International Year of the Family in 2024 have been centring on megatrends and their impact on families. The focus on selected megatrends, including technological change, migration, urbanization, demographic and climate change, aims to facilitate the analysis of their impacts on family life and to recommend responsive family-oriented policies to harness the positive aspects of those trends and counteract their negative facets.

Sacred Journeys: Exploring some Andhra Pradesh Temples Part 2

This is Part 2 of our temple pilgrimage to the Tirupati Balaji Temple, the Sri Padmavati Temple and the Sri Kalahasthi Temple on a road trip from Bengaluru.

Coming down from Tirumala took almost an hour because there are speed restrictions and it took us about 45 minutes from the point of entering Tirupati to reaching the Padmavati temple. Located in Tiruchanur on the outskirts of Tirupati, the temple is under the administration of Tirumala Tirupati Devasthanams. Padmavathi or Alamelumanga is the main deity of the temple and faces the east. She is an incarnation of Goddess Lakshmi and the consort of Lord Venkateswara. It is believed that the Goddess Lakshmi was born as Alamelu to Akasha Raja, the ruler of this region, and wed Venkateshwara of Tirupati. Goddess Lakshmi gave darshan to Lord Venkateswara on a red Lotus flower or a Padma in Sanskrit at Alamelu Mangapuram after his deep penance for twelve years. According to tradition, the Mother Goddess manifested Herself in the holy Pushkarini called Padmasarovaram in a golden lotus. The Venkatachala Mahatyam states that Lord Suryanarayana was instrumental in the blossoming of the lotus in full splendour. A temple dedicated to Lord Suryanarayana is situated on the eastern side of the Pushkarini. The Padma Purana gives a vivid description of the advent of the Goddess and subsequent wedding with Lord Srinivasa. The manifestation of Sri Padmavathi Devi occurred in the month of Karthika on Sukla Paksha Panchami when the star Uttarashada was in the ascendant. The Brahmotsavam of the Goddess is celebrated with pomp and glory.

We reached the temple around 8:15 am and realised that the temple was closed after the early morning prayers and would reopen at 9 am. So while waiting, we had breakfast nearby. After breakfast, we brought the tickets for the express queue which were for about Rs 200 per person and started waiting. As with Tirumala, our belongings were scanned and all mobile phones asked to be deposited at a counter. My parents were sent on ahead in the senior citizen queue. The queue took about 20 minutes to reach the goddess who was beautiful! We had a very good darshan and then waited for my parents to come, after which we rushed to the last temple in our itinerary, the Sri Kalahasthi temple.

The only photo I could click in the of a temple in the entire tripSriKalahasthi Temple

By the time we finished with the Padmavati temple, the time was nearly 10:45 am. On Friday, the day we were to go to the SriKalahasthi temple, the Rahu Kalam was between 10:30 am to 12 noon and I wanted to visit the temple during this time. Located in the town of Srikalahasti, about 40 km from the Padmavati temple, the temple is one of the most famous Shiva temples in South India and is said to be the site where Kannappa was ready to offer both his eyes to cover the blood flowing from the linga before Lord Shiva stopped him and granted him moksha. It is also famous for its Vayu or Wind Lingam, one of the Panchabhoota Sthalams, representing wind. The temple is also regarded as a Rahu-Ketu kshetra and Dakshina Kailasam. The inner temple was constructed around the 5th century and the outer temple was constructed in the 11th century by the Rajendra Chola I, later Chola kings and the Vijayanagara kings. Shiva in his aspect as Vayu is worshipped as Kalahasteeswara. This is the only temple in India which remains open during Solar and lunar eclipses, while, all other temples are closed. This temple is famous for Rahu-Kethu pooja where it is believed that performing this pooja will ward the people from the astrological effects of Rahu and Kethu.

Goddess Parvati is enshrined in the temple as Shiva-Gnanam Gnana Prasunamba or Gnana Prasunambika Devi. According to legend, Lord Shiva’s consort Goddess Parvati was cursed by him to discard her divine form and assume human form. To atone, Parvati performed penance at Srikalahasti and pleased Shiva. Shiva granted her a heavenly body, a hundred times better than her previous divine form. Cursed to become a ghost, Ghanakala prayed at Srikalahasti for 15 years and after chanting the Bhairava Mantra, Shiva restored her original form.

On reaching the temple, I was praying hard to Lord Shiva that we make it to the sanctum sanctorum before Rahu Kalam ends. Our driver was god-sent and raced down and made sure we reached and prayed to the Lord just as it turned noon. He also spoke to someone at the temple entrance and got us to alight at the VIP entrance. He also spoke to an employee who, on payment, became our guide and took us on a very good tour of the temple without standing in any line and also procured a wheelchair for my father. Goddess Parvati was decked out in gold and this is something only done twice a week, on Mondays and Fridays and we were fortunate to have a glimpse of the Goddess in this form. At this temple also, we were asked to deposit our phones and electronic devices, so I could not take any photos anywhere.

After an hour spent in the temple, we finally exited the temple and started our journey back to Bengaluru. The journey back to Bengaluru was uneventful and took us about seven hours because just as we entered the city, we caught the evening rush hour which added another hour to the journey. We had lunch at the same place we had brunch the day before and our next meal was at our home. We all slept a fair bit of the drive back and were pretty exhausted by the time we hit the bed. But our hearts were full because of the amazing darshans we had. I was happy that I could facilitate this trip for my parents. Hopefully, we can make another trip to all these temples again and soon.

Sacred Journeys: Exploring some Andhra Pradesh Temples Part 1

During our recent trip to India, my father wanted to visit my family’s ancestral temple or Kuladevta. A Kuladevta is is a clan deity or an ancestral tutelary deity in Hinduism and Jainism. Such a deity is often the object of one’s devotion and is coaxed to watch over one’s clan, gotra, family, and children from misfortune. This is distinct from an ishta-devata or personal tutelar and a grama devata or village deity. Male kula devatas are sometimes referred to as kuladeva, while their female counterparts are called kuladevi. The word kula devata is derived from two words: kula, meaning clan, and devata, meaning deity, referring to the ancestral deities that are worshipped by particular clans.

In my father’s family, Tirupati Balaji is the kuladevta and so he wanted to make one last trip to see the Lord before he becomes unable to travel at all. Tirupati is about 280 km from where they live on the outskirts of Bengaluru and we decided to hire a car with a driver to take us there. The driver was very experienced and since he usually makes at least three trips to Tirumala and Tirupati weekly, he knew all the ins and outs of the temple and was able to guide us accordingly.

By the time we left Bengaluru, it was almost 7 am and it took us almost two hours to navigate the city and get into the Bengaluru-Tirupati Highway. The highway, especially the part that falls in the state of Andhra Pradesh was a super smooth six-lane highway with extremely good roads that could be driven at 100 kph. For those travelling from Bengaluru to Tirupati, I can recommend Hotel Sapthagiri as a rest stop for lunch or brunch. We stopped here both ways and I found the food good and reasonable, and most importantly during a road trip, the restrooms are clean and useable. Travelling from Bengaluru to Tirupati, the restaurant is on the side towards Tirupati and comes just after the toll plaza and is about 30ish minutes before Tirupati. We had breakfast before leaving home and stopped there around 10:30 am for an early lunch or brunch.

After a brunch stop, we continued on our journey and then I had my first surprise. On reaching the town of Tirupati, at the turn-off to Tirumala, we saw many people in other vehicles getting down with their luggage and walking. I was very curious but realised very soon that, just like you clear customs and immigration when you go from one country to another, just like that, before entering Tirumala, you need to get out of your vehicle, carry all your luggage and get them scanned, before getting a pat-down. While this is going on, your vehicle also gets a scan and then once everyone and everything is cleared, you are allowed to sit back in your vehicle and start the journey up the seven hills. Since my parents were old, they were allowed to remain in the car and were scanned along with the vehicle. This whole process reminded me of clearing customs in Singapore and Malaysia when we travel between the two countries by public transport. Tirumala is also a plastic free zone and our driver told us that plastic water bottles are asked to be binned at this point. But our bottles went through, though it may be because they were not single use bottles. From the time we reached the checkpoint to the time we were allowed to resume our journey, it took us about 20-25 minutes. According to our driver, this was the off-season and during the peak season, this process can easily take an hour or more.

The time taken from the checkpoint to Tirumala takes about 30 minutes and once at the top, we went to leave my parents to a special senior citizens queue. We had gotten the agency that supplied us with the car and vehicle to get us special tickets for my parents under the senior citizen scheme and for us under the NRI scheme. But don’t think this meant we got special privileges. The cost of all the tickets was Rs 300 each and all this meant was that we were in a different line and instead of spending about five hours, we spent about three hours in the line. This queue is also available to others and most of the people in the line with us looked to be locals, so I am not sure how we were in a special line.

After dropping off my parents, we went to secure our room. An aunt’s friend who is a frequent temple visitor got us one room, but we were six people and the second room was only available from midnight. After securing the room, we were dropped off for our darshan queue.

All the temples we visited are electronic-free zones and we had to leave our phones in the car with the driver. At some point in the line, our bags were scanned and there was a power bank in my bag that I forgot to remove. I was asked about it and when I explained that there are no phones in the bag, a senior official was called and even though I was thinking of giving up the power bank if needed, they allowed me to keep it. But the problem with not having any mobile phones during the darshan meant that after we came out, we needed to get access to a phone to call the driver. But according to him, most employees are more than happy to share their phones with us and this is what happened to us. While getting the famous laddoos, we asked someone working there if we can use their phone and they obliged. And this was useful because we were looking for my parents and after speaking to the driver, we learnt that they were already in the vehicle.

After the darshan, we reached our room which was on the second floor. This was a problem because there was no lift and my father who was already exhausted by this point could not walk up. After trying to reason with the person giving the keys to the guest house, we tried to get him to walk up, but after seeing him, another employee got the first employee to speak with the main booking office and finally shifted us to a room on the ground floor. After resting for a while, we adults went out because my father wanted to do a hair tonsure which is free. The barbers ask for some money which we are supposed to give discreetly because the room is fitted with CCTV cameras and there are signs which remind pilgrims not to pay the barbers as they are salaried. After that, we brought some food and went back to a room that was meant for three people, but was going to sleep six people now. The guest house refused to give us an extra mattress or even extra pillows or sheets, so we made do with what was available.

Tirumala is incredibly clean and where we stayed was close to some houses, where even at 9 pm, we saw women washing their doorsteps and putting rangoli which seemed odd to us as usually this is only done first thing in the morning. Also there are RO water machines everywhere and pilgrims can refill their water bottles throughout the temple complex. We spent a sleepless night except for the children who shared a bed and we four adults shared the double bed. After the sleepless night, we woke up early and after getting some coffee, left the room around 6:45 am to go to our next temple, the Padmavati temple.

Please watch this space for Part 2 where we visit two more temples.