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.

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“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.

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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.

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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!