Monday, February 19, 2018

Living with Parkinson's Disease: An Agenda for Action

LIVING WITH PARKINSON’S DISEASE

This was written by his caregiver in 2004 for the National Conference on Parkinson’s Disease, Challenges and Hopes, held in Bangalore, on September 30, 2004.
It was read out at Siddharth’s funeral on 27-01-2018. He died on 25-01-2018.

***

“I start with an explanation: I have chosen a verse style of speaking only because it allows me to pack more content into fewer words. The rhyming is not meant to be frivolous. Though my tone might sound like I am slowly chugging along, I will finish within my allotted ten minutes. I hope that in giving my personal experience, I connect with the general opinion on " Human and Social Consequences of Parkinson's Disease " which is my high-sounding topic.”

I begin now to relate a tale
of life centred round Parkinson's disease.
I will speak from the angle of the family,
words to put you at considerable ease.
I will give a first-hand account
as a care-giver or care-taker.
I will try to give courage to the patient
and appeal to the policy-maker.

My husband was diagnosed with Parkinson's
with a stiff shoulder at forty-two.
Though it was a far-fetched word to us,
it didn't hit us like a bolt from the blue.
With Dr S, we took it with courage
as something that comes free with life,
no point in cursing our bad luck
and heaping up woes and strife.

The first ten years were really not bad;
just some tablets, the expenses were nominal.
A six-monthly visit to the doctor,
the check-ups were nothing phenomenal.
There was a slow yet steady decline,
but we kept our enthusiasm burning.
Soon the children could not have their father
spend time on their games or their learning.

The next six years were with higher doses,
the dyskinesia and the freezing got terrible.
We got used to the fitful sleeping
but the nightmares were quite horrible.
Except for close family gatherings
he couldn't mix much with others.
He found himself isolated in a group;
going to concerts and movies became bothers.

Dressing up took two hours,
talking was a whisper at best.
He fell on the road several times when with help
from the kindest strangers we were blessed.
With having to live life between offs and ons
and with reduced body control,
he regressed in his daily activity,
being forced to take a secondary role.

The immediate family learnt to become slow
stepped off the rat race, didn't get worried.
We decided to let him set the pace,
he got more unable if he was hurried.
His jobs became more difficult to do,
he was tending to curl into a shell,
but he didn't give in to his helplessness,
his brave attitude served him well.

It's important to be able to call for help
but cell-phone buttons are too close-spaced to handle.
We've made patent-worthy innovations—
like an elastic strap fixed to his sandal;
a cow-bell hanging from the bed-post;
a cycle-horn on the toilet rack
for when his six foot one-inch frame bent double
and he could not straighten his back.

A sharp mind, engineering at IIT
and management at MIT's Sloan,
caught up in an unresponsive body
that his brain could not govern on its own.
While his classmates were heading big companies,
he needed a crutch, a box of pills—
twenty-one tablets, eleven times a day
and mounting pharmacy bills.

His assets, three things that he did best
were thinking and speaking and writing.
Mercifully his thinking was left intact,
but his speech was poor, so was typing.
You can imagine the frustration when
you have an idea you want to spread.
But you only mumble and no one waits to hear
and your scrawl, it just can’t be read.

For his mother to see her older son thus,
her darling from the day he was born,
was a struggle, she couldn't stand the pain,
she cried, her heart was torn.
Our eighty-year-old aunt was so concerned,
to let him carry his suitcase she refused.
Most people don't know how to relate to him,
the complexity of Parkinson's leaves them confused.

I, as his spouse, had no choice
between work and home I had to run.
Tests and visits to the doctors
and errands that had to be done.
Physical and right-brain exercises were prescribed
and learnt, but the flesh was unwilling.
When the spirit was weak, how could I nag him
to do as the speech-therapist was bidding?

To minimize compromising our children's needs,
we made a smooth and copable family pact.
Our two sons and we shared responsibilities
and we did our chores matter of fact.
I became handyman and driver
paid bills, bought railway tickets.
He managed to concentrate on his job,
leisure was computer games and TV cricket.

He had his dear brother for moral support
and his surgery expenses to meet.
His sons and his help gave him confidence
the risks of the new procedure to beat.
The DBS gave him excellent relief.
Doctors U, A and D did the trick
And now at fifty-eight he's looking like new
A new life ahead, new options to pick.

Only now when he's abroad on holiday
and responsibilities I have not,
I realize my involvement as a carer,
in the Parkinson's cage I've got caught.
Every day after work, there was no question,
to be of help I had to head home.
This past month I've found a new freedom
I go visiting, I lie back, I roam.

From the association it would be nice to provide:
a list of trained attendants in case of need;
and for care-givers to update themselves,
Parkinson's literature to read;
Knowledgeable mentors who could be available
at a help-line during the day,
with a view to provide companionship
or clear doubts that come their way.

Government involvement through building rules
and road crossing and traffic laws:
Ban uneven surfaces and transformers
and objects that jut out like claws;
While they struggle to be good citizens,
give tax relief and disability deduction.
Firms, sponsor the surgery, cut the implant device cost
help them contribute to economic production.

Spreading awareness to the public
so that when they are out somebody knows
that they can only move if there's open space,
best to ignore them, stay away from their toes.
Encourage more hospitals to have staff,
trained specially in movement disorders,
so that patients don't have to shuffle far and wide
to seek expert medical orders.

Let doctors not have to trial and err
to tailor the most suited dose.
Let pharmaceutical research make it a priority
let better drugs, without offs be close.
Let our efforts be directed in a concerted way
in the context of our local needs.
If we can boast of satellites and defence
why lag in these urgent deeds?

From others' experiences I have collected,
the main culprit is ignorance and fear—
fear of how to be a bread-winner;
fear of inadequacy to near and dear;
fear that the disease eats you up from within;
fear the next step you take you might fall.
These fears have to be individually confronted
and addressed by us one and all.

The thing that helps us in our hard times
is that we don't ferment our fears;
a "we are doing our best " attitude of confidence
no over-protection, no tears.
As Dr. V advised be positive,
to the negative we must be immune.
Maybe he hears a distant drummer;
let him dance to a different tune.

Parkinson's shows strange opposites,
sometimes excessive, sometimes zero movement.
No need to feel embarrassed, it's all part of life,
there has been much improvement.
Bless the doctors, the nurses, NIMHANS,
the people, both stranger and friend,
Who stand by us as the disease degenerates
to an unknown and therefore, fearsome end.

But take heart, dear Parkinson's patients,
let's accept it in a natural way.
Each of us has to get something
either yesterday, tomorrow or today.
If you take these things in your stride,
even though a stride is difficult for you                        ,
we are there to share and lighten your load,
we will not abandon you.

And all of you at this conference,
who were kind to listen to my brief,
let's give courage to the Parkinson's patient
and do away with all laments of grief.
Let's shower them with respect and affection
and understanding, and allay their fear,
since we've already got the better of Parkinson's
and soon we hope to hear of a cure.

THANK YOU,

A care-giver.

******************


This account was written by someone who took care of a person with Parkinson's disease. The family lived with the disease from its onset, as it claimed their loved one, stage by stage. Through the years, they showed love, patience, courage, resourcefulness and creativity. There has been immense grace in how they have coped, and our admiration from afar has turned to awe as we have read this account that put words to what we witnessed without understanding. 

When I first listened to this account at his funeral, even through the fog of intense grief, beyond the parts that broke my heart to hear, its very practical suggestions held out to me that 'something we can do' which we had not known how to seek before. I want to highlight those parts here.

******

What could professional associations do to support Parkinson's patients and caregivers? 
  • They can provide a list of trained attendants in case of need;
  • They can prepare and share updates on the disease, care and treatments available so caregivers can update their knowledge;
  • They can identify mentors who would be available at a daytime helpline. They might serve as counsellors or just support caregivers through listening.
What could hospitals do?
  • Hire more staff trained to care for patients with movement disorders;.
  • Minimise the running around for Parkinson's and other patients in search of the right doctors and treatment options. 
What could pharmaceutical companies do?
  • Create medicines with calibrated dosage so that doctors do not have to experiment with their prescriptions, causing patients distress.
What should the government do? 
  • Drafting and implementing disability-friendly building rules, road crossing and traffic laws;
  • Taking care of uneven surfaces, and ill-positioned transformers, loose wires and "objects that jut out like claws;
  • Offering tax reliefs and deductions to persons with disability (including Parkinson's patients who might need aids like wheelchairs). 
What can corporates do, whether as part of their CSR or HR policies?
  • Sponsor surgery (like Deep Brain Stimulation or DBS) for Parkinson's patients that improves the quality of their life;
  • Cut or subsidise the implant device cost;
  • Find ways to help patients find employment or to work productively. This may mean more disability-friendly spaces, or flexi-routines, or setting aside tasks that are easy for them to perform;
  • Innovate disability-friendly designs for everyday products, like cell-phones with large keys (mentioned in the above account).
There is also a case to be made for letting caregivers lead or at least collaborate on the design and production of support equipment. In this account, several home-made innovations are mentioned. Every caregiver has probably created makeshift solutions that could be rationalised and replicated affordably, or even shared through support networks. This is also a project for a large-hearted corporate in the health-care sector. Going beyond doctors to brainstorm for R&D would reveal all sorts of creative solutions. 

What about the rest of us (who just look on helplessly)? 
  • Awareness can just mean, stepping out of their way, giving them room to move, ignoring them (so they are not pressured or rushed, or self-conscious).
  • The kindness of strangers makes a lot of difference--whether helping when they fall or moving things out of their way. 
The writer underscores how people feel when Parkinson's disease enters their lives. For the patient, it is 'a sharp mind... caught up in an unresponsive body.' For them and their families, ignorance and fear govern their reactions. Support--from doctors, from other caregivers and from society--to reassure and stand with patients and their families is very important. So is acceptance: "Maybe he hears a distant drummer; let him dance to a different tune."

As she writes: 

"Let our efforts be directed in a concerted way
in the context of our local needs.
If we can boast of satellites and defence
why lag in these urgent deeds?"

It is so easy for us to look away, to give up and to pretend that there is nothing we can do. And yet, there is so much we can push for. I am sharing this on my blog as a way for more people to learn, by accessing this window into an experience most of us do not think about until it becomes our own. 

Another such window to help understand is this film about my aunt, Leela, who had the same disease.



Please help me get this out by sharing. Also, if you have experiences or solutions to share, do leave me a link or an account in the comment box. 

Thank you for your attention and help! 

Saturday, January 13, 2018

Too many words in the world?

I came to the blog this morning and realised that I had not been here since December 21st. Before that, while aspiring to blog everyday, I had managed to blog at least a couple of times a week for a while.

December-January are social months in Chennai so the words that are in the head get spent. Also, right after the 16 Days Campaign, one retires into a cave, trying to recover. The year began with resolutions relating to physical self-care and that puts other things on a back-burner--why is it an either/or though? Perhaps I just don't balance things well. And then grief. Grief, which directed all my words to phone calls and texts to other bereaved family members. All my reasons.

But as I look at Twitter and Facebook this smoggy morning, I also wonder: Is it that there are too many words in the world today? All of us write, even when we have nothing to say, and the words are littered everywhere, across every medium. What is left for me to say? So I am reading--a better use of my time, I suspect.

And in the meanwhile, I am also reflecting on the importance of some kinds of silence. A little more restraint in commentary. A little better resistance of the urge to opine. A little more reflective silence within oneself. A little more listening to those who rarely spill words. A little more learning. 

Thursday, December 21, 2017

#nosgbv Dignity and violence

Yesterday, a short video made its public appearance. It ostensibly showed the late Tamil Nadu Chief Minister, J Jayalalithaa, as she lay in her hospital bed,  sipping juice and watching TV. Her clothes were in disarray, as ours get when we are relaxing, thinking we are alone.

This suggests that the video was shot without her knowledge, and shot by someone who did not care about her sense of dignity or her privacy. It was shot without her consent.

The video was meant,  we are told,  to convince voters that she was well taken care of and to tip the balance in favor of the Shashikala faction. In fact, it tells us that these were people who did not and do not care about JJ and what she would want. She was and is an instrument for them. But that is a different discussion.

Suppose this were not a hospitalized leader but a young woman changing clothes or a teenager in the shower. What would we call this video? There are penalties in the law for shooting photos and videos without consent. It is a violation of rights,  privacy and the law. A crime.

The law uses old fashioned language like 'outraging modesty'  and we are wont to smile. But what else is a video like this and who is going to file an FIR on behalf of a leader who fiercely guarded her privacy and public persona?

Last night, CNN India played the video over and over. What is the penalty for that?

We will not ask. We use and lose the leaders we claim to idolize. Like we do all other human beings.

If this is the fate of someone who was so powerful, what can the truly powerless expect? How meaningless are the memes that dominated 2017 for the elite? Consent? #metoo?

Where do we begin to change thinking about respecting each other, about rights, about borders, about privacy?

Monday, December 18, 2017

Mea culpa: I too have eaten dinner with Pakistanis

For over a week now, my conscience has been pushing me to write this mea culpa, for I too, have eaten dinner with Pakistanis. Yes, those same Pakistanis that Indian social media insists can never be innocent or trustworthy. Alas, I too am anti-national.

I have not just had dinner with Pakistanis, I have had breakfast, lunch, mid-morning coffee, afternoon tea, anytimeisteatime chai and late night green tea with them. And also, ice cream. I won't apologise, but I do confess.

The first Pakistanis I got to know, although they then were too far away to share any meal, were my Pakistani brother and his family. I did not eat with them until 1985, but I did send the occasional rakhi across the border. In 1985, I visited my brother on his American campus, and stayed with his cousin sister who, as a very hospitable South Asian, fed me. I also ate with him and his many Pakistani friends--dal chaval and pizza, as I recall. But all that was in the US, so it may not count.

In the meanwhile, my uncle visited Ajmer Sharif and came to Bombay just to meet my parents. I was not there but I believe he did not eat anything at our home. This is a terrible thing in South Asian culture, as you know. He did not eat. But many years later, when I visited their home, I ate many meals--lunch, tea, dinner--all specially planned for the visiting vegetarian daughter. A treasured memory remains sitting at the dining table, enjoying delicious apples from Pakistani Kashmir. The apples were sweeter for the affection with which they were chosen for me.

Long before that, my only other South Asian classmate in my MA International Relations course was a Pakistani woman about ten years older than me. She and her husband were both lecturers in Political Science in Pakistan and had come to study in the US. They were shocked (him, especially) that my parents had sent me alone to the US at 20, and adopted me. I ate at their home regularly--yes, usually dinner--when my classmate would cook sabzi separately for me, and feed me dal, subzi and roti early with her two little kids. In her eyes, I think I was not much older! They would make sure I ate--and what did they have that they shared so generously, she was a student and he had a campus job, and they had a relative staying with them too--and then one of them would walk me to the bus stop and make sure I got back to my dorm. They were family. But I am told now, they could not be trusted. So maybe there was arsenic in the delicious firni I ate in their house that I miraculously survived?

You might say, these are 'ordinary' people but it is the security-diplomatic gang one should be leery of. Perhaps. Perhaps.

You see, I have eaten dinner with them as well. Many of the people whose op-eds you read and that you watch on hydra-headed TV discussions are people who were in non-official track, confidence-building programmes with me in the early 1990s. We stayed together for weeks, and ate together, and talked all night, and much more... and confidence was built. And friendships that will last a lifetime. Friendships between people who shared similar experiences, across borders, with sometimes contradictory perspectives--but friendships, anyway.

And the women peace activists I work with now, who have gone from strangers to friends to sisters, who know what sorts of bangles I like and that I want to have a blog about fabric and embroidery someday using photographs of their clothes. The alliances made when eyes meet over shared hurt--one complains, the other consoles, without words. And yes, I am so sorry, many meals have been shared with these terrific women--and a regional buffet of munchies fuels our meetings, where chilgoza meets murukku.

And many other meals all over the world with friends and professional colleagues from the Pakistani side of the border.

I forgot to tell you about the Pakistani fellow-intern from Karachi whose 1971 memories were a mirror-image of mine. But I don't think we ate dinner together, so it doesn't matter.

I meant to write a detailed, chapter and verse confession, but I realise there have been too many meals in over half a century to list here. Also, too many deep and too many silly conversations. Too many books and too many mixed tapes. Too much tea and too much laughter. Tears too, when I first moved to a city where I (still) have few friends, but I could call Islamabad on my cell-phone and share my transition travails with close friends. Too much silliness over international calls made just to get instructions on how to receive faxes on a home printer. Too much water under this friendship bridge.

Mea culpa, even though I do not understand how warmth, love and friendship can ever be anti-national.

Do you think that sharing salt and bread build mutual obligations that keep us from hurting each other? Isn't that a good thing? Isn't that why breaking bread together is a part of spiritual practice? Not eating together preserves the walls between us; Indians have used that as a way of maintaining caste difference over thousands of years.

Do you think that hearing each other's stories reminds us of how similar our struggles are, making it hard to demonise each other? Isn't that a good thing? Is it not a good thing that we get to know each other's frailties from a place of care than of enmity? That we can protect each other?

Isn't communication--over dinner or tea--especially important when you disagree? And a good friendship is not one in which you agree all the time or that you follow slavishly, but where there is enough honesty not to fake all that and enough respect to give each other space to be quite different--but not so much that a helping hand cannot reach.

All my life, I have thought these were good things, and that building the personal ties that keep us from mutually destructive policies was a fabulous idea. I still do. Mea culpa, for that too.

Let me close by sharing with you something a Bangladeshi diplomat said to me during an interview in 1985. I was being clever and asking how he defined South Asia. His brilliant reply: "South Asia stops when you go to someone's house, and the food no longer tastes like home." My South Asian home has many rooms, each quite self-sufficient and separate, but our dining tables merge under the force of that common civilisational instinct to stuff people's stomachs to the point of stupor--and food across the region tastes of spices and condiments we have traded across millennia. Wherever I move, across this table, whoever I break bread with, I am still eating at home and that is how it feels.

But have it your way--so, mea culpa.