Dubai-based Indian expat empowers Parkinson's patients with innovative approach

Gulf News

An Indian expat from Dubai is advocating a ‘Movement Mantra’ for those diagnosed with Parkinson’s disease.  Read the full story here: https://gulfnews.com/uae/watch-indian-expat-in-dubai-helps-empower-parkinsons-patients-1.95415833  See more videos at https://gulfnews.com/videos Read more Gulf News stories here: https://bit.ly/2HLJ2km  Subscribe to Gulf News on YouTube and watch more of our videos: https://www.youtube.com/user/GulfNewsTV  #UAEnews #health #parkinsonsdisease

Transcript

00:00When we were diagnosed with Parkinson's in 2016, it was a shock to us, actually.

00:03And because Parkinson's is basically a movement disorder,

00:06means every moment there is a problem.

00:08You cannot move properly.

00:09You cannot move your hands.

00:10You cannot move your legs.

00:11And that's how it starts.

00:12It's been a journey.

00:14The important part is the acceptance.

00:19The earlier you accept it, the easier it will be.

00:25I got diagnosed with a young onset Parkinson's in 2016.

00:28So when we were diagnosed with Parkinson's in 2016, it was a shock to us, actually.

00:32And because Parkinson's is basically a movement disorder,

00:34means every moment there is a problem.

00:37You cannot move properly.

00:38You cannot move your hands.

00:39You cannot move your legs.

00:40And that's how it starts.

00:42So it was a shock of life.

00:43So basically, it took a long time for us to get into the acceptance mode.

00:47Before that, we went into a lot of traumas.

00:48We went into a lot of medication changes.

00:50Medication, this medication, Ayurvedic, meditation.

00:54We tried left and right, whatever we could try.

00:56Mahmood has been diagnosed with Parkinson's since the last six to seven years.

01:01It was a difficult time for us to accept it.

01:04But I would say a social message to everybody who have a family member with Parkinson's

01:11or the people who have Parkinson's, that it's not the end of the world

01:17if you are called a Parkinson's patient.

01:20It's been a journey.

01:22The important part is the acceptance.

01:26The earlier you accept it, the easier it will be.

01:31We refused to accept it and kept on deceiving ourselves by calling it a neurological disorder,

01:37which everybody knows is, of course, Parkinson's.

01:40And I would try and hide my hand below the table whenever I had a tremor.

01:45But there's nothing wrong about it.

01:47You have not done anything wrong.

01:48It's just your number was called out.

01:51Fine.

01:52You just need to deal with it.

01:53I was not able to move a single part of my body, come what may.

01:58Even I could not close my eyelids.

02:00I could not speak.

02:01I could not.

02:02There was no voice.

02:03Every muscle was basically, it stopped moving.

02:06There was no movement in my body.

02:08And from there, we recovered.

02:09And then I realized the acceptance is so important.

02:12Once you accept, then you start working for it.

02:14Then what's the outcome?

02:16What counter you can do?

02:18And then we realized the exercise is the main part.

02:20Because what happens in Parkinson's, it's a movement disorder.

02:24You're not able to walk.

02:25Then you're not able to eat.

02:26You're not able to move your hand backside.

02:28So basically, what it does, it restricts you in many of the parameters.

02:33So exercise, basically what it does, it exactly counters the thing.

02:35If you're not able to walk, you should walk.

02:37You should forcibly walk.

02:38So that develops some muscle memory.

02:40So now I'm in a condition now where I have started my life again normally back.

02:44I drive.

02:44I go for swimming.

02:46I go for badminton.

02:46I play table tennis on a professional level.

02:48I was lucky.

02:49Others may not be as lucky.

02:51I have a fantastic caregiver.

02:53And vice versa.

02:54I have a good husband.

02:55I have an amazing caregiver.

02:56Had it not been for her, today I would have been in an electric wheelchair.

03:02It's her persuasion of making me understand that

03:07movement or exercise is as important, if not more important than medicine itself.

03:12We have the movement mantra group and they call themselves the Parkinson's heroes.

03:17Having said that, the caregivers are called the superheroes.

03:21Which suits me fine being a wife of 38 years.

03:24Initially, we used to be afraid to or we were embarrassed to say that Mahmood had Parkinson's.

03:30But the realization came to us maybe the last four to five years saying

03:35that it's okay to have Parkinson's and not be guilty for having Parkinson's.

03:40Because the fact that he has Parkinson's is not a reflection on his past or whatever.

03:46It's a genetic, it's what a degeneration or whatever.

03:51There's nothing impossible with Parkinson's.

03:52But only thing is that there has to be disciplined exercises and set of exercises.

03:56And motivation is very important.

03:57Because this is what he does.

03:59It basically puts you down every moment.

04:00Because medicines, the way they work, it's every three, four hours there's an up time.

04:05You have a better time.

04:07And after three, four hours, medicine, once the effect goes down,

04:10you got into again rigid mode.

04:12You cannot move.

04:13So every three, four hours, this episode keeps on happening in a day.

04:16You are good.

04:16You are bad.

04:17You are good.

04:17You are bad.

04:18So that puts up your mind basically.

04:20And that's where the negativity comes in.

04:22So my message to whoever is having Parkinson's, not to get bogged up with a disease.

04:28It's difficult, but it's manageable.

04:31If I can do, I think anybody can do it.

04:33It's a very important part is that there has to be support from family,

04:35without which we cannot progress.

04:38So that support part which comes from the caregiver.

04:40So she's been with me, she's been with me in every condition,

04:45with my ups and downs and with my hospital days and all.

04:48So if she breaks down, then I'll break down.

04:50So her strength basically gives me motivation that if she can do, I can do.

04:54So that strength comes from the caregiver.

04:56So I'll just hand it over to her.

04:57How she handles, it's credit to her.

05:00Awareness is less.

05:02And when we started sharing with people that Milan has Parkinson's,

05:05he was very comfortable.

05:07People accepted it.

05:08And now he's very comfortable.

05:10It's just that we have to take care of some times,

05:12you know, where we don't go for late nights or whatever.

05:15In Dubai, we have a group called Movement Mantra,

05:18where we meet other Parkinson's people.

05:20And with their help, we do a lot of movements.

05:23We learn how to dance as a form of movement.

05:26Then playing games is a form of movement.

05:29So different kinds of movements we do.

05:30And it's helping me a lot.

05:31So I'm absolutely as normal.

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