An Indian expat from Dubai is advocating a ‘Movement Mantra’ for those diagnosed with Parkinson’s disease.
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#UAEnews #health #parkinsonsdisease
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
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NewsTranscript
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.