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Times Of India
24 Aug 2012
How can the medical community succeed in finding a cure for dementia, Alzheimer’s and other such ailments when there aren’t enough brain tissues available for study and research? Showing the way is a dementia patient from Bangalore who donated her brain to India’s only brain bank

Mother handed over the scribbled note to Swapna Kishore, her only child. The writing was unsteady but urgent.

" This is to informall concerned, in the event of my death, the following desires … ( should be carried out ). On confirming mydeat horbrain death –… donation of all the organsto the ex – tentit is medic ally possible, followed by donatingof my body to amedical college or hospital for research….”

When mother wrote the note she was on her way to succumbing to dementia. Swapna had heard her mother talk about "donation” from the time she was a little girl. "I became aware of the seriousness of her intentionwhenIwas20,”saysSwapnawho is now fifty five years old.

January 2009: Few people exist in mother’s world. She has forgotten her dead husband; she remembers her daughter only because she sees her everyday; Swapna is her primary caregiver. Her son–in–law exists in her world for the same reason. She remembers her only grandson on some days. On days she is alert Swapna shows her family photographs of yore. Such days became less frequent as time chugged along.

A year later mother is no more confused or disoriented –all signs of mid–stage dementia. Swapna doesn’t rush to prevent mother from falling and hurting herself either. Mother is now completely bedridden.

Care for mother begins at 2 am with a diaper check. Changing diaper is a gargantuan task. Mother usually locks her knees tightly. She resists. Glares. Unwilling. Or she just lies there. After the diaper check and change, mother needs to be turned gently onto her other side. Next bout ofcleaningisat5.30am.Breakfastat8, lunch at 12 and dinner at 6 pm takes half–an–hour to two hours. To be fed, mother needs to be propped up on the bed;50–turnoftheleverofthebedand some heaving and pulling props her up to the right height. Food is liquidized fruits and biscuits or soup or Ensure; medicines are powdered and mixedinwatersoshecanswallow.But now mother often forgets to swallow. It’s an uphill task to get her to open her mouth. Sometimes she swallows the food,butatothertimessheletstheliquid flow out from the side of her mouth. Sometimes, she sleeps midway during a meal. Bath is no longer a daily activity. It is based on mother’s energy levels. But she is always kept clean, dry and powdered –no compromises there. After dinner she is given her medicines followed by nebulising.At10pmthediaperforthenightis put on. Then the alarm is set for 2 am. Another day goes by.

Most of the time mother looks blank even if one smiles at her or talks to her. Sometimes she nods or smiles. Once in a while she will respond with a word or two, or even a full sentence. But those moments are rare. "I tried to freezetheminmyhearttocompensate for all that blankness,” recalls Swapna.

Dementia is the gradual deterioration of mental functioning. It is caused by the death of brain cells, which can be destroyed duetobraindiseaseslikeAlzheimer’s or stroke or other causes like high fever, Lyme disease, multiple sclerosis, brain tumor, Parkinson's, or Huntington's. "But dementia should not be confused with senility. It is not,” says Dr.Susan George, neurosurgeon. It can strike anyone. At a time when women barely went to school, motherhadthreePGdegrees–inpsychology,philosophyandEducation.

Ask anyone who has a loved one afflicted with dementia, Alzheimer’s, Parkinson’s or any such neuroconditions and they will tell you that not a day goes by when they don’t wish for a miracle. "Do you know whatitisliketohaveyourmothernot recognize you or watch your once strong father turning into a child, dribbling at his mouth or forgetting to wear his clothes?" asks Pravin Kumar whose mother suffers from Alzheimer’s. "I watch my mother deteriorate everyday –it’s like she’s disappearing into a void, little by little. What I wouldn’t do to hear her voice just one more time. I feel helpless...you are constantly asking yourself –why can’t they find a cure for this dreaded disease. Why? ”

AccordingtotheAlzheimer’sand Related Disorders Society of India, Bangalore Chapter’s website there are over 30,000 people suffering from dementia in the city alone. Treatment to reverse or halt disease progression is not available so far. Even as the number of cases increases, the medical fraternity is striving hard to find a cure. But it’s been a difficult task due to lack of availability of brain tissues for research purpose.

Human Brain Tissue Repository, known as the Brain Bank, at NIMHANSistheonlybrainbankinIndia. It was established in 1995 and is headed by Dr S K Shankar. "Human brain tissues are necessary for any form of research in neurobiology," says Dr Shankar. Much of the research has been conducted using animalmodelswithextrapolationof theresultstohumans."Butultimately,validationoftheseresultsrequires confirmationusinghumanbraintissues. Investigations on human brain will give a quantum leap in understanding the biology of human diseases;itwillhelpinfindingcures,developing new treatments.”

Swapna will tell you that mother was not a saint, just a person with a different approach to life in some ways. Mother believed that one can do as much as they can to helppeople–bothinlifeanddeath."I don’t want anything of me to go to a waste,” mother would tell Swapna repeatedly. "Donate all that you can of me and the remaining give it to a medical college for research.” Swapna didn’t find the request bizarre; instead it became her mission.

Mother relentlessly gathered all information about ‘donation’ for as longasSwapnacanremember.Ironically, even after developing dementia, she didn’t forget. When the familymovedtoBangalorefromDelhiin 2004, even though the move was traumatic for her, just three days after moving she asked Swapna: "Where is the hospital for donation here?” Swapna found out.

Later, Swapna heard a presentation on brain donation by Dr.Shankar,sheknewthatbraindonationfor research was exactly the sort of thing mother would have liked to do. Mother was no more in a position to elucidate her houghts.

January 2012:For the last two and a half years of mother’s life, Swapna’s ensured that she was no more than one hour’s driving distancefromhome.Sothatwhenmother dies there will be no time lost in taking her to the hospital for ‘brain donation’. Swapna informed her neighbours in advance that she will not be able to inform them when mother passes away incase it delays the brain–donation process. She even told her son who is studying abroad that she will contact him only after the "donation” is completed. ‘Donation’ became the family’s focal point. Sunday March 25, 2012 began like any other day. Mother was stable, but deteriorating. Aroundmid–morningshebegan gurgling. Swapna and her husbandcalledthedoctor.Bothalso surfed the net for information about gurgling…some gave gurglers just a few hours or days to live; it was called the ‘death rattle’.

The doctor came and prescribed medication to be given by IV. A nurse was arranged to come home for administering the medicine. The gurgling seemed to reduce. Mother was left to rest. But by the time the nurse came, mother was not breathing. Chest compressions didn’t help. The pulse was silent and still.

It was time to for project ‘Donation’; the family even had a folder named 'Donation' with details about whom to contact, documents needed etc that would ensure the brain to be donated within the window period of six hours. They called a doctor to confirm the death and issue the death certificate; an important document that would enable donation. Swapna placed a wet cloth on mother’s eyes; mother was particular about eye donation too. After the death was certified, the brain bank was informed; mother was taken to NIMHANS in an ambulance. The eye bank team arrived too. Swapna wanted to watch the procedure.

"Iwantedtowatchitbecause it was my way of understanding the process," says Swapna. "I wanted to understand why people were scared of donation. But whatIsawprovedthatthere’sno need to be apprehensive. Mother was treated with utmost respect. Everybody involved, the staff and the doctors, treated her gentlyandwithdignity.Itwasin sharp contrast to what I had experienced when my father had died over a decade earlier. I had performed the last rites. And I have had firsthand experience of everybody haggling for money right from the ward boys to the poojaris at the ghat. It felt dirty. But, my mother's donation process was peaceful and dignified. I strongly feel that my mother was right all along in donating her brain and body instead of wasting it by consigning it to flames.”

Next morning mother was handed over to the family after her brain and spinal cord were removed. The doctors had covered her in a crisp, pristine white cloth and a garland around her neck; there was a neat strip of white bandage looping around her head and under the chin. Mother looked peaceful. Swapna then accompanied her mother’sbodytothefinaldestination, MS Ramiah Hospital, anatomy department where mother's body was donated .

When Swapna returned home that evening it was less than 24 hours since mother had passed away. All she had now were memories, some certificates, mother’s handwritten consent note for donation and the immense satisfaction in knowingthatshehaddonewhat her mother wanted all her life.

While some people were appreciative, there was a sense of discomfort amongst others. Motherwasanextremelyprivate person. She hated being photographed. She had been adamant that her body should not be kept for viewing. The rites that mother wanted were unconventional –Donate every part of me,” she had said.

Some people asked: "How could you do this?”

Another, a doctor, said: "I can understand donating the eyes,butthebrainandthewhole body…”

Yet another asked: "How will your mother’s brain work on somebody else’s?”It doesn’t and it can’t. You don’t transplant brains. People are still not fully aware of brain donation.

In India’s only brain bank there are a mere 235 brains (only 8 brains are available for research on Parkinsons and Alzheimers). This year, mother, Bimla Kishore, (Donor Card No:807) has helped to increase that number by one. An act that spells hope for the future. A commendable way to leave the world, indeed! (Swapna and her family carry their brain and body donation cards on them all the time. Swapna blogs about dementia at www.swapnawrites.wordpress.com) INDIA’S ONLY BRAIN BANK "At the brain bank we collect, store and preserve brains with neurodegenerative diseases and normal brains too," says Dr.Shankar, professor and head of department neuropathology, NIMHANS. "In addition to the diseased tissues being investigated, researchers also need to study, for comparative purposes, normal tissues from nonneurological and non–psychiatric individuals. A researcher needs a minimum of 10 brains to establish a finding. So, it is imperative that neural tissues are available to them when needed so they don’t have to worry about where and when they can obtain the tissue, allowing them to accelerate their efforts."

"Tissues are most beneficial to researchers when the time between death and autopsy is kept to a minimum, preferably under six hours. A pathologist removes the brain and it is preserved in special solutions to be used by neuro– scientists. The removal of brain and spinal cord causes no disfigurement. The incision is sutured carefully and covered by hair. There is no shaving of hair. The midline incision made on the back to remove spinal cord will be sutured and covered by plaster to resemble a clean surgical incision. The operation takes an hour or two. We give back the body fit for rituals. Even if someone has pledged their brain during their lifetime, the brain is collected only following an informed consent from family/close relatives after the death of the person. So if you want to donate you need to take your family into confidence. Anyone may enroll during life as a potential brain tissue donor after death. There is no monetary benefit either to the donor or to the organization. The donated brain will be given to the researchers at no cost. Brain donation is a noble gesture made by the donor/relatives for the benefit of future humanity, by promoting research."

My mother always said: ‘Donate all that you can of me...’ Donating her brain is something that mother would’ve wanted me to do...”

SWAPNA KISHORE, DAUGHTER OF BIMLA KISHORE

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