12 months are not enough to go around to acknowledge everything out there.
I found out April is not just for Autism but also Poetry Month and also Community College Month.
Yeah for both the latter as well.
Community Colleges are such wonderful places for autistics, offering college level course and college level expectations in a smaller, easier to handle environment.
And I love poetry.
I graduated from San Jose City College. Yeah!
Looking forward to going to UC Berkeley
Highlights
- Special Callout for Outstanding Academic Achievement during the Commencement.
(That was quite unexpected)
- I had been shortlisted (list of 5) for valedictorian too
- Three tassels on my cap. Yellow for Honors, Purple - Transfer, Black - Regular)
- Yellow Honor Cord
- Lots of Sashes - a silver one from DSP too.
- My Patti (grandma) was able to attend.
A writeup I did for my college Biological Psychology Course
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Hari Srinivasan
Psych 22: Biological Psychology
Autism and the ANS
Abstract
Autism as a spectrum disorder is still not fully understood as it comes in many variants which indicate varied underlying psychological basis. This paper discusses the role of the nervous system in Autism, specifically the Autonomic Nervous System. While research is underway in the path towards its biological underpinnings, a much better understanding is required before it can translate into meaningful treatments in order to improve the quality of life for the affected ASD population.
Autism and the Nervous System
Autism Spectrum Disorder (ASD) is a lifelong neurological disorder with its onset commonly in early childhood. The DSM-V classification of ASD is largely based on observable external behaviors such as deficits in social-emotional skills, repetitive behaviors, and communication skills. However the condition also seems to be accompanied by a whole host of co-morbid conditions such as ADHD, mood disorders, sleep disorders, intellectual disability, obsessive compulsive behaviors, and sensory dysregulation. Epigenetics could also play a role wherein the environment affects gene expression. A mix and match of varying degrees of severity in these parameters result in huge numbers of people that fit this spectrum disorder. One in every 110 children is being diagnosed with ASD in the US today . The severity ranges from individuals who are non -verbal and/or with many challenging behaviors to those who are barely distinguishable from their peers.
There has been an increasing focus on the role the nervous system plays in the physiological underpinnings of autism. For instance, my personal experience as a person in the ASD spectrum points to the inability of the ASD individual’s nervous system to handle environmental input as the probable cause behind the atypical “stim” (ie: self stimulatory) mannerisms. An example is walking into a crowded room and hearing every conversation in the room at the same volume, and being unable to filter out the ones the individual needs to focus on. The ASD individual may resort to atypical behaviors like flicking fingers in front of his eyes, generating their own verbal sounds or even banging their hands on their heads, all in an attempt to drown out the environmental visual and auditory cacophony. Social and communication skills are part of a typical person’s toolbox in coping with stressful situations; deficits in these areas often prevent an easy resolution for the ASD individual, heightening the problem. So sensory stimulation can result in hyper-arousal, hypo arousal or sensory seeking behaviors in ASD individuals.
My personal observation and experience as an individual on the ASD spectrum has also been that of an unclear sense of body-schema which could well be the cause of the constant movement exhibited by many on the spectrum. It is almost as though the brain has to continually ascertain the position of the parts of the rest of the body in space and time. The continual movement of the body (a movement disorder) could be an adaptive effort to keep this connection between brain and body alive. Without the movement, it would be like a brain that was lost as it did not feel attached to the body. A sense of panic could well set in when waking up in the dark at night and feeling body-less, thereby affecting sleep patterns and mood. According to the Subiaul et al (2007), “ It is well known that individuals with autism have poor body schemas and suffer from impairments in motor functioning, and planning.” Ergo, ASD individuals exhibit atypical Autonomic Nervous System activity,
The Autonomic Nervous System (ANS) is part of the Peripheral Nervous System. The ANS regulates our internal organs thus involving a lot of actions that are involuntary in nature. The ANS has 3 parts - the Sympathetic Nervous System, the Parasympathetic Nervous System and the Enteric Nervous System. The Sympathetic, “controls functions that accompany arousal and expenditure of energy,” while the parasympathetic, “controls functions that occur during relaxed state,” (Carlson, 2013). Many studies have backed observations about atypical ANS activity in Autism, such as the study by Schaaf et al. (2015) which found that ASD participants exhibited, “a different pattern of parasympathetic activity”. Changes in heart rate (specifically RSA or Respiratory Sinus Arrythma) in response to sensory stimuli is an oft-used measure of Parasympathetic activity in studies due to its non-invasive nature while variants of EGC’s are needed for measuring sympathetic activity (Schaaf et al., 2015). Schaaf et al. also point to other studies that show atypical arousal levels in sympathetic system in ASD individuals. Interestingly the sympathetic activity decreased in some studies and increased in other studies, leading researchers to conclude that ASD individuals would, “engage in self-stimulatory or active sensory seeking behaviors to either dampen or increase sympathetic levels in order to calm or arouse themselves,” respectively (Schaaf et al, 2015). Even as scientists and researchers agree more and more on ANS dysregulation in the ASD population, “the exact nature of the ANS dysregulation is [still] not clear,”.
Such self stimulatory mannerisms and movement issues, being almost involuntary in nature, pose one of the biggest challenges for an ASD individual and their families as they are considered socially inappropriate and make societal inclusion and acceptance all that much harder for the ASD individual especially as an adult. It is clear that further insight into understanding the biological underpinnings of the ANS dysregulation in Autism is necessary before it can translate into meaningful and targeted treatments for the ASD population. For instance, the neurotransmitters, acetylcholine and norepinephrine play a major role in the ANS; the manipulation of which via pharmaceuticals could potentially play a future role in treatment and thereby improving the quality of life for ASD individuals. In the meantime, many in the Autism population continue to muddle through their overwhelming sensory environment hampered by a dysregulated Autonomic Nervous System.
A personal reflection for a Psychology assignment
Choosing to Help and Myer-Briggs Personality Type
Reflect on your own experiences with choosing to help or not help others.
I think my having autism has probably influenced my thinking and perception quite a bit. Perhaps it may not have been so, if I did not have this disability.
I've had autism almost all my life and for many years I really had no avenue of communication with others, being non-verbal. I also have lots of sensory issues which make me hyperactive and seem almost attention deficit and a bunch of fine motor issues too. There is this huge mind-body disconnect.
Whatever was tried eg: picture icons etc were so limited in nature. The icons were usually ones that the teacher thought I needed to communicate (not what I wanted to communicate). But can human communication be limited to 20 objects on a page for months on end. Very simple lessons (which I could grasp in a few minutes) were repeated months/years on end. It was dismal and I tuned out for most part out of sheer boredom. Of course this was viewed as my not being able to learn by my teachers and other experts in the field. And I was not the only one. Year after year, I would see observe others in my situation or similar situations leading this quite hopeless existence. And from the conversations I would hear, there were hundreds of kids being diagnosed in my area itself.
I had plenty of time to just observe and ponder. Its intriguing - the conversations and discussions you hear and see, when you are assumed incapable of understanding. You may as well be a fly on the wall. It speaks a lot for the human nature - their public vs their private faces. It was perplexing and frustrating, yet ironically educational in way.
On a broarder level, predujuices seemed to permeate all aspects of society. There seemed to almost be this ignorance on the part of many which resulted in negative consequences for other target populations or individuals. There was this broad underlying commonality in all situations.
At 13, I was introduced to typing and finally able to communicate and then finally access an age-appropriate education at 14, that my typical peers took for granted. I found I could make a difference in changing influences and attitudes through my writing. Physically I have many challenges to overcome, but can at least communicate more specifics to researchers and doctors (be part of the solution) rather them guessing what the issues are.
I can be a productive member of society and a contributing member of society, albeit in my own way. Isn't that the purpose of human existence.
Instructor Feedback: Thank you for being so open. I can’t help but be intrigued about what you learned and heard while you felt you were a fly on the wall. I am sure it has given you a perspective on life that many your age have never even thought of.
What personality factors influenced your response?
My Myer Briggs personality type showed as INFP.
However I don't agree with everything that is listed under this category.
While my silent years have probably developed the intuitive, feeling and sensing part, I am extremely logical in my thinking too when it calls for. I can plan and organize things in my mind. This has become somewhat a necessity for me as I am a very slow typer. It takes a very short time to organize concepts, details and ideas in my mind or even absorb and analyze information, and a long time to type it all out. I hope to be a scientific researcher in addition to being an author/poet/writer.
I can be disorganized in my daily life but that is due to challenges of autism, not my mind. I do have emotional regulation challenges too but again that is part of the inability to physically do many tasks as well the teen hormones.
I don't see why a person should be classified into a slot - the human mind has the potential for so much more. Very true, the depths of the human mind is beyond comprehension, it is quite impossible to put someone in a slot.
An essay for my Eng 1A class
The Boy at the Back
(A Snapshot of America)
Pens scratch words on paper as the students sit hunched over their desks. Other pens are lifted in mid-air as thoughts are pondered and organized in the canvas of the mind. The college classroom is quiet and the scent of concentration permeates the air. Some students sigh in relief at having finished their responses and get ready to leave. A myriad of students sit in the room, some with last names not easily pronounceable by the instructor. The melting pot of culture and ethnicity that is America is reflected in this community college classroom. But what is even more striking is the presence of the boy sitting in the back with significant disability challenges. That boy is me. I have non-verbal autism and a host of other issues. Yet here I am attending an advanced level English Composition college class. This snapshot essentially shows the promise, possibility, and opportunity inherent in America which now has transcended not just the barrier of ethnicity but also that of (dis)ability.
The very fact that a person with my level of challenges is able to attend college shows the promise of America. According to most reports by Psychologists and other professionals dated a few years back I was headed for an adult day program with college nowhere in the scene. I am non-verbal to start with. Add to that significant body disorganization, fine motor challenges, sensory dysregulation, and social anxiety. It was assumed I would not improve after the early intervention years of therapy during toddlerhood. Autism is just a label for the whole confused mix of disability and is wide in its scope. In my case it’s a mind-body disconnect of sorts but I was being judged merely on external observations. I had no way to overturn established opinions of me as I had no avenue of communication. An intelligent rational mind was buried under the irrational body. I was wasting away my years in a special education classroom learning two-digit addition and three-letter words. I was still subject to the preschool circle-time in special education at age 12. Where was all this mentally stimulating education that the American dream spoke of? Lady Liberty was not delivering her promise to citizens like me. After high school I would be in one adult day program followed by another day program for older adults above age 50. I was doomed to a life of monotonous nothingness. I had wondered then if I would ever get the opportunity of attending a typical classroom. What a contrast from the snapshot above. For it was quite by accident that I stumbled onto learning to communicate via typing at age 13. There was more to me than just an errant excitatory body which I could exhibit at last. The road to mainstream education was not easily accessible and hard won for me. So that makes me appreciate it all the more. I eagerly lapped up Algebra, Shakespeare, Programming, and Biology. I empathized with Frederick Douglass who had realized the power and possibility of education in turning our lives around. It was not easy to change perceptions of what someone like me was capable of either. I still have a host of autism issues to deal with which constantly throw obstacles in my everyday life. It is both a maze and an obstacle course every day as I walk on unchartered territory. It is a lot of hard work and requires much physical effort. I made it through high school garnering multiple writing awards on the way and even made valedictorian. Who would have imagined all that in my silent years? I’m now attending college in my own limited way. There I sit in the college classroom snapshot. And no doubt many others will follow after me and along with me. That is the promise of America.
It takes a country like America with its mindset to provide opportunities via support and infrastructure to make college a reality for someone with significant disability issues like me. I may have a bright mind but without understanding lecturers, guidance from college disability counselors, accommodations, and my other support staff, education may continue to be an elusive goal. The very fact that such options are available speaks volumes about American life. It enables someone like me to be part of that snapshot. That is the opportunity in America.
I may be sitting at the back of the room but there lies the possibility that I too will come to the foreground as I find ways around my autism issues. My sitting at the back is symbolic in a way much like the slow and steady tortoise which caught up with the hare. Education is empowering as Frederick Douglass realized and can open up other hitherto closed doors. In addition, disability itself does not have to be limiting as Dr. Stephen Hawking shows us in modern times. Given the neurodegenerative nature of his disability Dr. Hawking currently has to use cheek twitches to select one character at a time on the computer screen. The text then has to be converted to speech via a speech synthesizer. It is a slow process but Dr Hawking does not allow his disability to limit the brilliant output of his mind. Technology has been a great enabler and it can only continue to improve. We live in America which is in the forefront of technology. Dr. Hawking’s communication devices are powered by non other than Intel. The snapshot does not show it clearly but there is an iPad in front of me. That is my communication device, my mouth so to speak. Dare I dream that I will make it all the way to PhD on my path to education? There is the possibility that I can be part of the solution on my way. Education will enable me to become a productive and contributing member of society. That is the possibility in America.
I see this promise, possibility, and opportunity in each and every person bent over their responses in the snapshot, not just me. That is why they are present in that room. That is why these students seek a college education. This English Composition class is a transfer course requirement which implies a desire to pursue a bachelors degree. A college degree leads to better careers. It is the promise of America. In addition, the significantly lower costs of community college allow them to pursue this promise no matter their economic background. In fact, President Obama wants to make community college itself free. That is the opportunity in America. And no longer is ethnicity a barrier to a better life if one pursues it with determination. The snapshot shows it all. That is the possibility of America.
At its crux, American life represents basic human life which has both ups and downs. Poverty, illness, housing, family, disability and other issues get in the way. Life with its little details can be exhausting but it can be exhilarating too. The promise of positives is what keeps the human spirit going forward. For a peek at the promise, possibility, and opportunity of America just look the boy at the back.
This is a paper I did for my Developmental Psychology course. The subject for my case study is my grandpa Raghavan. Unfortunately from the time this paper was written there was significant deterioration in his health and my Raghavan Thatha passed away on Jun 10, 2015.
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Developmental Tasks in the Elderly
Case Study: Sadagopa Raghavan
Hari Srinivasan
Developmental Psychology
Abstract
The subject of this case study is 82 year old male, Sadagopa Raghavan, who currently resides in Chennai, India. The individual has recently been diagnosed with Parkinsonism. This paper looks at his life history and examines his current level of performance per Robert Havinghurst’s Developmental Tasks for his age group.
Method of Data Collection
Information about the subject was gathered from family members and a medical doctor familiar with his case, as well as examination of reports and lab work on his case. Since the subject is my maternal grandfather, statements are also made based on personal observation and knowledge about him over the years. The appendix contains interview questions.
Personal Reflection
My 82 year old Grandpa Raghavan had always represented someone who did not let age limit him. It seemed like he could go on forever. He successfully switched career tracks several times over the course of his life, even starting a new law career at the age of his retirement. I’ve always thought he had a most productive and interesting life. He has always been active and engaged in some activity. A few months ago he was diagnosed with Parkinsonism. Last month he collapsed and spent 10 days in the Intensive Care Unit to the considerable shock of the whole family.
In the context of our developmental psychology course, we study the different tasks or crisis that we face in different stages of our life. Psychologist Robert Havinghurst defined the developmental task of dealing with aging parents as a crisis of middle adulthood. I feel that dealing with the crisis of aging grandparents or near family members is a developmental task that needs to be included for the younger age groups as well. As children, we assume the immortality of our grandparents, especially if all four are alive, so a potential crack in their seeming longevity comes as a shock.
Description of Individual and Background
Sadagopa Raghavan was born on Aug 25, 1932, in Chennai, India. He was the third son in a large family, typical of that period with 4 brothers and 2 sisters. His own father had been an entrepreneur, which meant that the family fortunes fluctuated over the years depending on the state of his father’s business ventures. The family went from extremely wealthy with cars, timber estates, mica mines, and mansions, to being economically challenged. Thus his childhood included interesting experiences like visiting timber estates in the South western state of Kerala, where along with timber; elephants would also be captured and used for hauling logs.
Raghavan’s education was typical for boys of that socio-economic class of that era in India. My family belongs to the Brahmin caste in India, which usually places a lot of emphasis on education. He and his brothers attended Ramakrishna Mission School in Chennai and went to study at Madras Christian College.
Raghavan had an interesting family. His mother operated a small scale business of her own – raising dairy cows and selling milk to local residents and businesses. His mother even participated in the Indian Independence struggle movement, giving speeches to other local women to inspire them. One time, he spoke of his mother’s sister, a social worker who had chosen to help out the “shudra” (or untouchable community) thus becoming shunned by a number of the Brahmin community. I found it refreshingly progressive for women of that era. Another cousin of his ran a Gandhi ashram which assists and educates the poor.
It was expected that Raghavan would follow the footsteps of his older brothers and do Math in college but Raghavan took up Zoology. He had once said that he would have liked to have been like Jacques Cousteau, the marine biologist, but that would not have been an acceptable profession for a Brahmin boy. As it is, he had to do his dissection projects well away from the house, as no meat was allowed anywhere near a Brahmin home. After completing his graduate degree in entomology from Madras Christian College, he became a zoology lecturer. He often recollects the time he had taken his students on an overnight camp to watch baby turtles hatch on the beach.
Raghavan switched careers and joined the central government service based in New Delhi, India. As was the custom of that time and which prevails even today, his marriage was arranged. He had two children - a daughter (my mother) followed by a son. The government job meant that he worked in various departments such as Archeology, Music Arts and even served as Assistant District Collector in rural areas. After his second child was born, Raghavan went back to college to earn an MBA at the University of Delhi. The business degree led to overseas opportunities and he was sent as part of the developmental aid initiative to the Kingdom of Tonga in the South Pacific.
Raghavan’s stay outside his native India was probably the most prolific period of his life. He was responsible for setting up the small-scale industries center and Tourism in Tonga amongst other things, He was a terrific speechwriter. Though it was not part of his job description, Raghavan helped write the Maritime Law for Tonga as they had none, and Japanese whaling vessels were illegally poaching whales in Tongan Waters at that time. Whaling was still legal those days and my grandpa has recounted stories of the gigantic whale bones that their dog would somehow find and bring home to chew on.
He then got an executive level position at the United Nations and traveled extensively all over the world for trade talks and industrial development. He was even a speaker at the United Nations Conference for Trade and Development. His name would be featured regularly in the New Zealand and Australian newspapers as well as in other countries of the Pacific and even in the Irish paper. Raghavan has met many world leaders including Queen Elizabeth II on her royal yacht Britannia.
At age 55, Raghavan returned to India. He resumed his Indian Government Service for few years but before retiring he again went back to the University of Delhi and got a Law degree. Thus, as soon as he officially retired at age 58, he was ready for another career. He joined some well-known Supreme Court lawyers as a junior lawyer. But given his experience and articulate writing skills, he was asked to write briefs almost immediately and started arguing Supreme Court cases within a year.
When a consumer protection governmental commission was set up, Raghavan was asked to join. There was no formal Consumer Protection Law in India till that point, and a Commission was set up to compile existing cases and draft a comprehensive Consumer Protection Law. In a sense, Raghavan is one of the drafters of Consumer Protection Law in India.
My grandpa is also a great admirer of Ralph Nader and would root for Nader whenever Nader stood for the U.S. Presidency. Raghavan carried on his Supreme Court Law career well into his 70s, winning a majority of his cases. He has worked on some landmark cases such as the Kaveri river water dispute case between two southern states.
He had a very intense personality and was always well-planned and meticulous in everything he did. On the other hand, he did tend to be over anxious and wanted every minute detail planned well ahead of time.
For all his brilliance he was very poor at handling any kind of gadgets from TV remote controls to learning how to use the computer. It was my grandma who would often do all the computer related activity. Grandpa would discuss Indian temple architecture at length, probably as a result of his years in Archeology. He’d even helped secure the site for the well-known Malai Mandir temple in New Delhi.
He loved gardening and had quite the green thumb growing all kinds of vegetables and experimenting with hybrid varieties. My grandma reports that grandpa often gave advice on plant growth to their botanist neighbor who worked in the Agriculture Department in the Pacific. Raghavan had developed some dozen varieties of eggplant for instance with different combinations of coloring and had come up with a new sugarcane variety in the Pacific. In India too, he continued his passion using pot plants on the balcony and terrace as they now lived in an apartment.
As they were aging, Raghavan and his wife decided to shift back to their native Chennai in South India, to be close to their siblings and other extended family. They made the move 4 years back.
However, the move meant the end of the law practice as the Supreme Court is located in the capital city of New Delhi. Suddenly Raghavan was not a busy man anymore and he had been used to being busy all his life. It was just him and his wife at home and really nothing much to do. Though both of his children visited, they lived in other countries and had their own young families to take care of. My grandparents still attended all the weddings, other family events and rode enthusiastically on public transportation to events and temples. Mrs. Raghavan had been a homemaker all her life and she continued in that role, though a lot slower. However, Raghavan simply was not being intellectually stimulated anymore and that is when he visibly started slowing down.
Mrs. Raghavan reports that in the last couple of years he would just wander around the house, not really interested in anything. He would read the newspaper and watch the occasional cricket match. Raghavan had always loved writing in his diary yet he never asked to buy a diary for the year 2014 at all. Mrs. Raghavan simply thought he had lost interest and did not think much of it.
Small unnoticeable memory lapses followed but this was put down to age. He started eating less and became physically weaker. His memory lapses increased while his motor skills decreased. His handwriting skills declined and he became reluctant to even pick up the pen as he could no longer motor plan to write, though he would stare at the paper.
He was diagnosed with Parkinsonism in September 2014. Some of his medications induced hallucinations and he would imagine people or situations. He would speak incessantly on some topics like court briefs but his speech would often be out of context and unclear. With physiotherapy and medication, his writing skills seemed to improve as well as his memory but the nature of the disorder means waxes and wanes.
Developmental Tasks
Developmental Psychologist, Robert Havinghurst (1968) of the University of Chicago delineated tasks that were to be carried out in each of the 5 major stages of life. According to Havinghurst:
The developmental tasks of life are those things that constitute healthy and satisfactory growth in our society. These are the things a person must learn if he is to be judged and to judge himself as a reasonably happy and successful person… Some tasks arise from physical maturation… others arise from cultural pressure…and yet others from the personal aspirations of the individual which are part of the personality or self.
Each age group faced different developmental challenges or tasks. For the Later Maturity stage of above age 60, Havinghurst lists six such tasks.
1. adjusting to retirement and its reduced income
2. adjusting to declining physical strength and health
3. adjusting to change in the health of one’s spouse
4. establishing an explicit affiliation with one’s age group
5. Meeting social and civic obligations.
6. establishing satisfactory physical living arrangements
Havinghurst’s focus is on reorganizing functions and expectations. For example, older adults who do not accept their changing physical and heath limitations and adapt may become maladapted. According to Havinghurst, the continuing refining roles and expectations to meet environmental demands accomplish the maintenance of identity. (ed. By M.S. John Pathy., 2005, pp.54-56).
Four of these tasks (1, 2, 5 and 6) are examined in the case of Sadagopa Raghavan as they seem most relevant to his case.
Task: Adjusting to Retirement and Reduced Income
Fortunately, finances are not a challenge for my grandparents in their aging years. Raghavan’s successful careers, savings and investments over his lifetime meant that they could expect to maintain a comfortable standard of living. Having retired from the Indian Government, meant that much of their medical expenses would be covered under the government medical scheme for their lifetime. So fortunately living and medical expenses are not an overriding issue at this point.
Psychologist Robert F. Peck (1968) had identified, “Ego differentiation vs. Work Role Preoccupation,” as a conflict that arises in the elderly group. This essentially refers to, “finding ways to appreciate and identify the self without the career being the marker of success.” (ed. By M.S. John Pathy., 2005, pp.54-56). Raghavan had coped with his first retirement by plunging into another career. It is possible that Raghavan’s behavioral apathy towards new interests in the last two years could simply have been early signs of the Parkinsonism which was yet to be diagnosed. If that health concern had not appeared, it is possible he would have developed new interests in his new environment given his self-driven personality, methodical nature and innate desire to remain active.
Task: Adjusting to Decreasing Physical Strength and Health
In my grandparents’ house, it was my grandma’s asthma that had been the overriding medical issue. Thus my grandpa Raghavan falling ill had been unexpected. He had always maintained reasonably good health till around age 80. “The caregiver for a married elderly frail person is usually the spouse, who is also elderly.” (Berger 564). Thus suddenly there was a role reversal - “The partner who nurtured may need nurturing care; the healthy partner may have to assume new roles of banker, handyman and decision maker.” (ed. By M.S. John Pathy., 2005, pp.54-56). During one his moments of consciousness during his hospital stay, my grandpa had sadly remarked on the difficulty that my grandma now was facing. Indeed, my 76-year-old grandma now has to manage everything from handling medical claims and treatment to hiring support staff to managing finances in addition to her own fluctuating health.
However, Raghavan had the foresight to keep his wife well educated on managing finances as a significant burden of IADL (Instrumental Activities of Daily life) has now fallen on her shoulders. IADLs include, “managing medical care, food preparation, filling out tax forms and payments, transportation, communication, maintaining a household and managing finances… IADLs are thought to be even more critical to self-sufficiency than ADLs (Activities of Daily Living)” (Berger, p. 562). While my grandma is managing well on this front, fortunately she also has significant help from her son on these matters.
Raghavan has a condition called Parkinsonism. The better known Parkinson’s Disease (PD) is generally associated with Lewy bodies in the brain neurons which can be addressed with dopamine replacement therapy. Parkinsonism, on the other hand, is an atypical form of PD and can include wide-ranging symptoms in addition to typical PD symptoms, and may or may not respond to dopamine replacement therapy. Related neurodegenerative disorders like Progressive Supranuclear Palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA) etc., are all classified as Parkinsonism.
Raghavan had initially refused to accept that anything was wrong with him at the time of his diagnosis a few months ago. Initially, he developed mild symptoms of the condition which includes bradykinesia (slowness in the execution of movement), pill rolling movement (mild form), tremors and cogwheel rigidity.
Later, he developed Parkinsonism Dementia. This is where the patient starts losing their recent memory and they have difficulty in forming new memories. The pathology behind this is decreased dopamine production in the substantia nigra located in the basal ganglia. It has two divisions - one goes to the mesolimbic system (affects memory) and the other to the cerebellum (affects motor). So both memory and motor are impacted negatively.
Constipation due to slowing of the bowel muscles reduced his appetite. The decreased eating and drinking along with metabolic derangement resulted in hyponatremia (drastic drop in sodium levels). He lost consciousness and had to be rushed to Intensive Care Unit. It was also thought that he may have had seizures and a mild stroke. One of the main attempts in ICU was to restore his sodium levels along with dealing with age-related issues in ICU such as respiratory infection.
After around 10 days in the ICU in November-December 2014, he was moved into the regular ward and started on slow liquid feeds and physiotherapy targeted at motor activity in order to decrease chances of disuse atrophy and stiffness. After two weeks of hospital care, semi-solid soft diet, he was discharged but will need rigorous care at home. He needs to work more on physiotherapy in order to improve his basic walking and motor skills as well as regular food and bowel movements. He needs to avoid excessive bed rest and its related consequences such as bed sores. He will likely need 24 hour case in the near future in case he tries to get up and falls before he regains his walking skills and then daytime assistance with living skills after that. He is not able to independently perform most of the tasks identified in the Activities of Daily Life (ADLs), namely eating, bathing, toileting, dressing and transferring from a bed to a chair (Berger, p.562). But in the few days since his discharge from the hospital, he is showing signs of improvement in areas of walking, eating and trying to get up from the bed on his own.
On a psychological level, there is bound to be a decrease in morale for Raghavan. This is going to be one of his major challenges ahead. He not only has to deal with recovering from a significant hospitalization setback but also needs to be dependent on other people to assist with his daily living skills. Having to wear an adult diaper can appear extremely demeaning for most adults. To get out of the hospital bed to sit or do his walking exercises, he had to wait for the twice daily visits from physiotherapists. That is bound to be a great source of annoyance for a formerly active individual. One time there had been some delay in changing his adult diaper. He had demanded to go home from the hospital, stating that he was, “being treated like a worm.” As part of his coping mechanism he has sometimes behaved like a stubborn child, refusing to eat or refusing to cooperate with therapists, or getting angry. He had pulled out his nasal feeding tube and his IV line at the hospital and needed his hands to be restrained which further upset him. A thumb impression had to be taken in place of his usual signature for the annual life pension verification, which again upset him. His reaction is not surprising given that in countries like India, only the un-educated use thumbprint signatures. Counseling and care from close relatives and loved ones always helps in this situation. In his case particularly, memory of the incident may not be properly established, according to my cousin and medical doctor, Dr. Madhu Parthasarthy, who has studied his case. So there maybe distortion in his reaction to it and patience is required while nursing.
Fortunately, Raghavan’s family has been very supportive in his time of need. Raghavan’s son visits often and helps guide his treatment plan. Relatives poured in to visit him at the time of his hospitalization and continue to visit him frequently. Many helped spend nights outside ICU and helped with food and moral support for my grandma. His nephew frequently comes and speaks to him of his younger days to divert his obsession with law, and my grandpa even recalled the names of the family cows and pet dogs they owned when he was a child. Both his sisters visit and talk so much that he has to tell them to stop talking. His brother calls frequently. My grandma’s siblings also offer considerable support, especially my grandma’s younger brother. The visits and calls no doubt cheer him up immensely in his time of need. He will continue to need this support going forward.
Task: Establishing satisfactory living arrangements
When Raghavan and his wife moved to Chennai, they did so with the explicit aim of being close to many of their near and dear ones in their old age. Their plan was actually well thought out, as evidenced by family support during the time of his hospitalization. The advent of Parkinsonism was an unexpected setback. That prematurely moved Raghavan from the old-old elderly to the frail-old elderly category. With physiotherapy, Raghavan is expected to regain some level of mobility, though he is likely to continue needing daytime assistance from staff for daily living skills.
Task: Meeting social and civic obligations
I feel this is one area my grandfather met very well. Throughout his work life, he had always been admired as a conscientious and trustworthy individual by all around him. He engaged in a lot of volunteer work and activity. Whatever task he undertook, he did it wholeheartedly and with great sincerity. When the Malai Mandir Temple authorities approached him a few years back, he declined the need for a public ceremonial acknowledgment for his earlier contributions via a plaque etc.
He never engaged in corruption that is rampant in developing nations like India despite occupying positions of considerable authority and influence. Over the course of his life, he always strove to find gainful employment for many individuals he had come across of varying backgrounds with no thought of personal gain. He has often been a counselor for many family crises in the extended family circle and amongst friends.
Of course, the sudden advent of a debilitating disorder like Parkinsonism changes the game plan and he is in the process of finding ways to cope with the changed circumstance. The family around him will have to help him in this process.
Summary and Synthesis
Worldwide, the life expectancy of humans is increasing. According to a report by Muthane et al. of NIMHANS (National Institute of Mental Health and Neurosciences, Bangalore, India):
The elderly population in developing countries is predicted to increase by 200- 280% compared with a mere 30-40% in the developed nations. Of the world’s 580 million elderly (>60 yrs), 61% live in developing countries and 22% (of total) live in India.
A corresponding increase in age-related disorders is only to be expected with this huge increase in aging population in India. The NIMHANS report further cites a study carried out amongst the elderly in Bangalore, India, showing that, “24% had Parkinsonism, with PD being the commonest (71%) followed by drug-induced Parkinsonism (2.55%).” They acknowledge that Parkinson’s and Parkinsonism has become a common neurological problem amongst the elderly in India. A major task going forward for these countries will be a establishing a system of caring for the elderly. (Muthane, 2007).
The major challenge at the individual level for 82-year-old Raghavan is coping with the realities of his chronic illness. Though Parkinsonism is understood to be degenerative in nature, the degree of progression and treatment options are not fully understood. Parkinsonism medications may also produce unpleasant side effects like hallucinations and insomnia and need to be constantly monitored and modified. Other age related conditions could add complications.
Psychologically, Raghavan still has not come to terms with his new and possibly debilitating diagnosis. He is intelligent enough to grasp that this label is thought to be neurodegenerative and that can be very devastating for anyone to hear. He may be worrying about my grandma’s future and other family issues as well.
The fact that he is likely to be dependent on others for his daily living skills will no doubt irk him immensely. The possibility of loss of some of his excellent cognitive abilities and memories due to the nature of his illness may be extremely frightening for him to deal with.
Struggling with both motor skills and memory loss is overwhelming at best. Continued support and counseling from family and friends will be critical. It will be a trying time for him and his caregivers as they attempt to journey on this new path.
People around Raghavan will have to help him develop new interests as part of his coping mechanism. For instance, interest in spirituality is both acceptable and age appropriate for him in the context of Indian culture, as is interest in music. In addition practices like regular breathing and meditation exercises may in fact help brain functioning. He may never go back to being the dynamic active individual of old but has to remember that the end game is a decent quality of life and a good respect for the self.
References
Berger, K.S. (2013). Invitation to the life span (2nd ed., pp. 499-572). Macmillan Higher Education.
ed. By M.S. John Pathy. (2005). Principles and practice of geriatric medicine. (J. Morley, A. Sinclair, & M.S.J. Pathy, Eds.) (pp. 54-56). Chichester; Wiley, c2006
Havighurst, R. J. (1953). Human development and education.
Muthane, U., Ragothaman, M., & Gujuraj, G. (2007, September 10). Epidemiology of parkinson’s disease and movement disorders in india: problems and possibilities. Retrieved December 11, 2014, from http://www.japi.org/october2007/R-719.pdf