How Sapna Rana, living with incurable ALS, is documenting her difficult journey

Theres an entire generation that has grown up listening to Sapna Ranarsquos voice on the radio Remember the tagline ldquoItrsquos hotrdquo that aired on the countryrsquos very first private radio station If that unlocked a core memory for you then you know exactly what wersquore talking about RJ Sapna was once the voice that lakhs of Indians woke up with every morning And then amyotrophic lateral sclerosis ALS took her voiceldquoAfter my diagnosis in February 2021 when I heard the doctors say lsquoyou have two to five years to liversquo I was waiting for the endrdquo she tells us over a video call from her Bengaluru bedroom which resembles a stateofthe art hospital suiteShe disappeared from her social circles as well as social media as the disease slowly took away the things she found joy in First walks with her two indie dogs Aloo and Mishti got harder and harder Next she lost one of her big loves dance Once known for her impromptu dance parties in the office shersquod make every new recruit get on a table and dance But soon she found her own body unwilling to obey her She switched to a selfcontrolled wheelchair but the disease switched gears too and went for her upper body Eventually she lost control of her arms and then her throat unable to chew or swallow food or speakldquoI was depressed I didnrsquot want to meet people I isolated myself and shut out everyone around merdquo she recallsSapna Ranarsquos favourite part of the day is when she heads out with her mother in red motherinlaw Rashmi in black among other loved ones and nurses for a walk with her dogs Aloo and Mishti PicAmit AnshuNot even ALS could silence Sapna forever though In recent weeks she has exploded on the social media scene with viral videos mdash one of them has garnered 26 lakh likes in just a week mdash recording her battle against the disease Her goal To connect with other persons with ALS PALS and their caregivers CALS and give them hope as well as generate public awareness about the medical condition Rare as it is half the comments are ldquowhat is ALSrdquo and the other half is ldquonazar is realrdquoldquoLosing my voice hurt most of allrdquo she tells us with the help of an eyegaze device that has a camera to track her eye movements and translate them into text or speech Itrsquos slow going the system requires Sapna to focus on one symbol or letter at a time to stitch words together The voice that emerges is clear but doesnrsquot have Sapnarsquos trademark vitality and magnetismBut in these videos Sapna has rediscovered her voice one that comes from within She talks about dogs mdash ldquoI canrsquot pet dogs any more so now they pet merdquo She shares her bucket list for when a cure is found ldquo1 Get a job 2 Dance 3 Make shite tea for companion and helper Manisha who has been giving me bakwaas tea for four years What are the chances that the tea kills me before the disease doesrdquoldquoThere are so many things I wish I had known earlier like voice banking Itrsquos when you record your own voice to be able to use it later on an eyegaze devicerdquo she says ldquoItrsquos a devastating disease and moves really fast So I feel a sense of urgency to share what I have learnt like using a baby monitor to call for help Or how important it is to not lose weight which hastens muscle atrophy or how to modify the toiletrdquoldquoMost of all I know what itrsquos like to be depressed with this diagnosis Itrsquos easy to fall into a black hole when you know that there is no cure and yoursquore going to get worse So I want to share what I read heard was advised prescribed to stay positive and hopeful Irsquom keen to tell people how I made a margarita with the giant lemon life threw at merdquo says Sapna who also shares resources on support groups her therapy regimen and other tips and tricks with the ALS communityIronically after years of asking her family ldquoWhy are you keeping me aliverdquo it was during a brush with death that Sapna found her will to live again ldquoIn March this year she had a cold that turned into pneumoniardquo recalls her mother Jaya Rana ldquoShe had to be put on a ventilator Sapna would always tell me that if she ever got to that stage she didnrsquot want tubes down her throat She told us lsquoI donrsquot want this just put me to sleep Why do you want to see me like thisrsquo I donrsquot know how I convinced her to do itrdquoThe real battle began as Sapna recovered and was brought home still on ventilator support ldquoShe was super scared to start breathing again without a ventilator felt like climbing a mountain Doctors werenrsquot sure whether she would pull through but she didrdquoldquoThat switched something in merdquo Sapna chimes in ldquoIf I could beat this maybe I could fight ALS toordquoShe started going to therapy attending four hours of rehab mdash speech and swallow therapy physiotherapy counselling ldquoHappiness is a choicerdquo she says ldquoI have found peace of mind and a purposerdquoShe texts us an extended response ldquoI spend my days exercising doing speech therapy trying to help people who have reached out to me on Instagram with resources for ALS Irsquom studying again I am currently doing an AI course to update my skills for work and Irsquom doing a course on mental health to better help myself and others in my support grouprdquoShe has also found her joy again ldquowatching mindless stuff like the Love is Blind web seriesrdquo ldquoI love my evening strolls with the dogsrdquo she adds Dance is back in her life too albeit in a different form ldquoShe makes us all dance around her bed or around the table And of course one of her favourite pastimes is making me dance to her tunerdquo her husband Varun teasesThis Diwali for the first time in years Sapna got her hair done and went shopping for new clothes ldquoShe enjoys the little things again like putting on lipstick or dressing up for occasionsrdquo says JayaThere are things Sapna misses dearly of course As a foodie now entirely dependent on a feeding tube she misses the taste of her favourites frankie and dal makhni She misses her Bandra apartment with the rooftop parties shersquod throw there She had moved to Bengaluru within a couple of months after her diagnosis when the family took another big blow mdash her mother was diagnosed with Hodgkinrsquos lymphoma cancerldquoBefore all of this my life was perfect I had a gorgeous house on Hill Road Work was stressful but fulfilling After years of voicing for the radio and training new RJs I moved on to a music label In my first year in music acquisition I managed to release several songs three of which including Paani Paani by Badshah and Aastha Gill became super hitsrdquo Sapna sharesDiscovering new music remains her passion ldquoIrsquom currently obsessed with Ishq by MumbaiDelhi musician Donn Bhat Kaantha by folkpop band Masala Coffee and a few Nepali songs Irsquom desperate to join a music labelrdquo she saysSure she may no longer be managing a team of 50100 people But If interacting with her this week has shown us anything itrsquos that some things havenrsquot changed at all She still makes her loved ones dance with joy Shersquos still raising her voice to help others And wersquore all still hanging on to her every wordRs 50K2LMonthly medical costs for an ALS patient depending on disease stage5No of ALS patients out of every one lakh IndiansSource 2018 study by Indira Gandhi Medical College and Hospital Himachal PradeshWhat is ALSALS is a neurodegenerative disease that damages nerve cells called motor neurons progressively worsening the ability to walk hand movements talk swallow and eventually breathe Also known as motor neuron disease MND it is a rare condition with no cure Itrsquos a diagnosis that comes with an average life expectancy of two to five yearsThe rare disease had its moment in the spotlight a decade ago when celebrities from Hollywood Bollywood and across the world participated in the ldquoIce Bucket Challengerdquo pouring a bucket of ice water over onersquos head to promote awareness of the diseaseFamous people with ALSEric Dane and Stephen HawkingGreyrsquos Anatomy and Euphoria star Eric Dane was earlier this year revealed to be living with ALS Last month he sparked concern among fans after he was seen struggling to get into a wheelchair at Toronto Airport appearing noticeably frail Perhaps the most famous celebrity PALS however is star physicist Stephen Hawking who was diagnosed with ALS when he was just 21 He went on to live another 55 years till the ripe age of 76 He is remembered for using technology to maintain his independence and career using a motorised wheelchair and speechgenerating technology to communicateClubbing in her wheelchairDr Hemangi Sane drives her motorised wheelchair to her office thatrsquos two minutes from her home in Seawoods PicKirti Surve ParadeNavi Mumbai resident Dr Hemangi Sane had completed her MD in internal medicine in New York and was practising there when she started to feel the early signs of ALS It started with weakness in her fingers and her handwriting got noticeably bad Unlike the doctor stereotype her handwriting used to be ldquopretty goodrdquo she says with a smile There is no straightforward path to diagnosing ALS it involves first ruling out all nonlifethreatening motor neurone ailments and then conducting an electromyography EMG to confirm ALS Dr Sane was diagnosed at The Johns Hopkins Hospital in Baltimore US in 2004 ldquoBeing a doctor I know what that diagnosis meant I broke downrdquo she recalls ldquoI was so active I used to play kabaddi in college I enjoyed Bharatnatyam as well as dancing in a club I could not believe I would lose all of thatrdquoShe moved back in with her parents in Navi Mumbai ldquoI would just lie on my bed and cry My parents pushed me to do rehab and try therapies Eventually cell therapy helped me The progression slowed my grip improved speech and swallowing also improved In New York they had told me to put my affairs in order in 2004 I have survived for 21 years since thenrdquo she says with a wry smileWe catch the 50yearold driving up the bylane outside her Seawoods apartment in her motorised wheelchair heading to her office just two minutes away Dr Sane runs her own nonprofit Asha Ek Hope to help others like her The NGO provides respiratory assistance equipment to patients free of charge along with providing nutritional guidance and psychological counsellingldquoThe most important thing is your mindset Donrsquot give up and donrsquot stop living your liferdquo she says Bharatnatyam is now a treasured memory but the quinquagenarian still enjoys the odd night out clubbing ldquoALS doesnrsquot have to end your life I still enjoy movies I like to party at the disco I just dance in my wheelchairrdquo she quipslsquoItrsquos hard on caregivers but we must fight for our loved onesrsquoSukhvinder and Satvinder Kaur with their mother Swaranjit Kaur on Motherrsquos Day May 10 in 2011One of the countryrsquos first support groups for ALS was set up by two sisters in Delhi mdash Satvinder and Sukhvinder Kaur after their mother Swaranjit Kaur was diagnosed with the disease in 2008 ldquoBack then we had no idea what ALS was When we looked it up on the internet we burst into tearsrdquo says Satvinder ldquoWithin two years she had to be put on ventilator support Doctors told us there was no hope that we should just take her off the ventilator At that time setting up a ventilator at home was unheard of But we rented one to fulfil our motherrsquos desperate wish to go homerdquo says SukhvinderThe sisters consulted many specialists on how best to manage their motherrsquos care It was hard going but their motherrsquos courage and their consistent efforts made it work ldquoAfter diagnosis Mamma stayed with us for 11 years inlcuding eight years on ventilator in a home ICU setup She left us in 2018 We went through numerous tough challenges during her care and medical emergencies mdash learning medical procedures on our own sleepless nights being socially disconnected working from home to remain financially independent But it all felt worth itrdquo say the sistersEventually they found others facing similar struggles ldquoIn 2015 we started the ALS Care and Support India ALSCAS WhatsApp group to help others with everything we had learnt We now have 750 members across the countryrdquo says SatvinderOne of the biggest learnings they passed on is advocating for loved ones and fighting for their quality of life ldquoWe have countless beautiful memories with our mother that we will cherish for a lifetime She got to enjoy spending precious time with her grandkids their brotherrsquos childrenrdquo they sayALSCAS brings together ALS families to share lived experience practical guidance and emotional strength through every challenge of the journey from mobility and feeding to BiPAP and ventilator care It also shares medical equipment with PALs free of costEarly warning signsDr Kaustubh Mahajan Consultant Head Neurology Fortis SL Raheja HospitalDr Kaustubh MahajanWe still donrsquot know what causes ALS Some cases are genetic others are what we call lsquosporadicrsquo There is no cure for the disease There are two drugs that are approved for use by the Food and Drug Administration namely Rilutor and Edavarone they donrsquot cure ALS either but can slow the progression by a few months There has been some talk of replacing damaged nerve cells with new cells from the bone marrow but studies have not yet shown this to be effective Such therapies are not FDAapprovedALS manifests as muscle fasciculation twitching and weakness in the limbs and sometimes it can start from weakness in the tongue or swallowing muscles Eventually it spreads to all muscles though The problem is that by the time we see these signs damage to the nerve cells anterior horn cells is already on the severe side From there on the disease can progress quickly which is why it has been a challenge to treat ALS Wersquove also seen that when a patient is diagnosed their loved ones start to panic when they observe even minor twitches in their own body and assume they too have ALS Our muscles sometimes twitch in the natural course of life but when that is accompanied by wasting muscle you should consult a neurologist If there is no accompanying wasting itrsquos not worrisomeMany ALS patients now draft a living will a legal document that specifies what lifesustaining treatments you would or would not want such as ventilators or feeding tubes in case you are incapacitated Most patients decide they do not want to be placed on the ventilator because it prolongs their suffering Making this decision in advance makes it easier for family members to respect their choices and avoid lsquosufferingrsquo Itrsquos a question of the patientrsquos mindset do you have a purpose and quality of life that makes it worth living under the restrictions of ALS Stephen Hawking is a good example of thisrdquo