Thursday, March 04, 2010

It could easily be You and Me

When someone close to you suffers from an illness or  an ailment then you will probably take more interest in the subject. As in my case, I am always reading and looking up for reports and read ups that is related to heart patients since my husband is one.

And we tend to ignore (though not consciously or purposely) or not be interested in things that dont really concerns us. Sometimes without realising, we take things and people for granted. Life is short and full of challenges, we may have been lucky but our luck could easily change in a split of a second.

My ex-boss, En Ramli and his wife were invited by their friend Pn Muhaini to join her and her team to the Malaysian Parkinson's Disease Association in Taman Gembira. She was conducting a drum circle session and also introducing laughter yoga for the members of the Assc. He asked me if I wanted to tag along and I jumped on the bandwagon with Yana, my 2nd girl.

This association is located in a housing area, run by Ms Sara Lew, whose father is a Parkinson sufferer for the last 20 years. She has a working committee and they all work on voluntary basis. Talking to her you could feel her enthusiasm, earnest and deep feeling for this cause like she's just been doing this, when the fact is she has been at it for 16 years!!

Three times a week, tuesdays, thursdays and saturdays they open the house for people with Parkinson's to get together. Its a really good network and support group. They hold singing sessions, dancing class and other activities to help these people to improve their motor skills movements and vocal abilities. They have groups that volunteers to come in and help out with a session or invite someone to share someting with the group. I am still reading up on Parkinson, you should too. From what I know they lose their movement and control over their body slowly but their minds are intact. 

It humbled me to see them. They came in walking slowly but willing themself to take the next step, some shuffling with walking sticks, some with the non stop shivering on their hands, some on  wheelchairs but they all came. It tears my heart to see them, knowing how frustrating it must be for them, having absolutely no control on how their bodies are slowly deteriorating and yet they are still mentally fully alert. It must be hard trying to steel yourself up everyday and move on and knowing that someday you  will be totally unable to take care of yourself and have to 100% depend on someone else. That, by the way is my biggest fear. 

But I saw  determination in their eyes. They know what is coming and yet they are not giving up and using the time they have left to the maximum of their capability. It helps that they have strong support from their family members and friends and a network like this to make them feel normal and not excluded.

After a short introduction session Puan Muhaini started the session. We started off with  singing and everyone sang their hearts out. From Bee Gees Words to San Francisco and John Denver's Country Road, they sang with all of us with gusto. I was looking at them and they were all into this whole heartedly. Puan Muhaini then started the drum session - this was a lot of fun, and totally new experience for me. Drums, rebanas, bells, were given out to the group and we all then try to synchronise our beatings into a rhythm and you have a conductor to guide you.  I had a go at conducting as well as En. Ramli and Yana and few more people and it was fun. You could really get into it like a trance ! What was more exciting was that each and every single parkinson member were giving it their best, albeit some with very limited movement , they still gave it their best.  They were beating to a fast beat, slow beat, up and down beat and simply having fun. Looking from outside in, it could easily be a session for a kindergarten class but this was exactly they needed .. exercising their hands and improving their movements.

We took a short break and managed to coax a member to sing. I think he was waiting to be called. He sang a chinese song , I wish I understood the words because it sounded so lovely and so touching. His wife dabbed her eyes and yeah got yours truly really misty too. His voice cuts through your heart. Another member,  who had Parkinson due to a road accident, also sang his heart out. His speech was a bit slow and blurred but he sang with devotion. It tugs your heart. We were then serenaded with another song from the first gentleman. 

Let me tell you a bit of laughter yoga. From the little I learned, you mimicked some actions/movements and do it with laughter to different intonations and different sounds of laughter! We did few moves and it was fun, everyone gave it their full energy and the room was filled with giggles and laughter and you really work your lungs and got the adrenalin pumping! Puan Muhaini then closed the session and we spent some time talking to Sara and mingling with the members.

About 10 members came, mostly in their 50's and 60's. They have all had Parkinsons for many years, few for more than 20 years. And they were really happy to see us, new faces. A lady came shuffling with her walking stick to thank all of us one by one. I was never more proud of Yana when I saw her giving the lady a mighty hug and a kiss. I must have done something right along the way!

Did you know that you can have Parkinsons as early as in your late 30's or early 40's? Its a scary revealation. It could easily be you and me. Sara mentioned to us about a guy who was in his late 30's that came to join the group. He had a glimpse of what his future holds for him looking at the advanced stage of some of the members and never came back. I hope that he will find it in his heart to come again so that he will not be alone to battle this war.

Please contact Ms. Sara Lew, the President of MPDA at 0133415418 or for further details on how to join them or how you can help them. Check out their website too. 

Puan Muhaini runs her own consultant company and is involed in charity works and has a lot of unheard of certificates that is truly awesome. Contact her for more details of the drum circle sessions and laughter yoga at

You can see pictures here, and do check my ex-boss's (I must find a better term for him hehe)  blog for more story, pictures and video clips on this visit. He writes better than me :) If its not up yet, do check periodically.

If you know anyone with Parkinsons or have someone in your family with Parkinsons and dont know about this association, let them know. Do call them up and join them. Ms Sara will help you out. And you will  get infected with her high spirits and laughter ! Its a place filled with love and laughter and no one would be made to feel that they are any different from the rest of us. 

And if you have some spare time, go with friends and families. Spend some time with these wonderful people. I guarantee that you will walk out with a wonderful feeling. And it reminds you of the realities of life. 


ARZ said...

June Bond,

I always know I can count on you. First, to join in the experience. Secondly, to blog about it. I told Muhaini, this is delegation...heh..heh.

I am glad we all could make it. As The Carpenters say, "we've only just begun....."

pakmat said...

..I don't have it..yet. ..but you never know, for at my age, everything is touch and go..:)so, thanks for the reminder..cheers..

June Malik said...

pak mat, it attacks any age unfortunately but of course the older u get the higher the risk .. hopefully maintaining a good healthy life helps us and also with blessing from above :)