We are in the privileged position at LIVIN to meet some incredibly inspiring people who despite their own challenges commit to spreading awareness for a cause that means a lot to them.
One such person is Jason Williams whose life changed five years ago after a small tremor in his thumb resulted in a diagnosis of early onset Parkinson's which unfortunately caused deterioration at a more rapid pace than anticipated and more recently led to the confronting diagnosis of Parkinsonism (MSA-P).
Despite this, Jason is more determined than ever to completing his initiative 'Shake. Rattle and Roll' where he will be riding from the Gold Coast to Sydney to raise awareness and start conversations around Parkinson's research and mental health awareness. And he has chosen to take LIVIN along for the ride . .
Tell us a bit about yourself . . .
So, I turn 50 this year which I still feel like I’m 20. It's funny how quick time goes. I am a pump station attendant on the Tweed Shire Council and was Deputy Captain at Fire and Rescue Banora Pt 514 Station.
I got diagnosed with early onset Parkinson’s disease 5 years ago, which has progressed a lot faster than I ever expected and has taken away a lot of things I loved doing, being DC at Fire and Rescue; surfing due to balance and just the every day things most people take for granted.
I’ve been married for 21 years to Tina and have four daughters Holly, Gypsy, Star and Pixie aging from 11 to 22 years old. We also have my 90 year old Mum that lives with us, so it’s a pretty busy house as you could imagine.
Living in such a busy house can be hard when you suffer an illness and mental health issues, I hide away in my room when it gets overwhelming, everyone understands which helps.
You have overcome many struggles in your life with both your physical and mental health. Are you able to tell us a bit about those challenging times?
Well, being diagnosed with Parkinson’s was one thing but they never said how much it affects your mental health, I honestly thought I was going crazy.
Overcoming struggles is one of the hardest things especially when you're someone that doesn’t like to show people and family there’s something wrong and always trying to be the strong one when inside you're falling apart.
As for the physical side its become very hard to hide my Parkinson’s now and I tend to stay at home a lot. Parkinson’s is a very debilitating and its um… you really don’t feel comfortable in company and you don’t feel comfortable in crowds.
Having quite noticeable movements in my arms, hands, face movements, finding it hard to show emotion as face stays blank, lost my smile. REM sleep which is when you act out your dreams which I don’t remember a thing. It's crazy but you don’t want to sleep in case you do something, so now I get sedated.
Then the mental health side comes in. I never thought in my wildest dreams this would happen to me, I don’t think anyone thinks it would happen to them but it can and it does, struggling to talk to people, even getting up in the morning. Overthinking every little thing even stuff from the past that meant nothing would take over my day, panic attacks, hiding away from family and friends, thoughts of suicide because I thought it would be easier for everyone for me not to be around.
Stopped doing everything I loved but all the time wanting still to be normal, what’s normal….? Do other people feel like this or am I going crazy.
The last straw was when every thing become very dark and the world would be better of with out me always dosed up on meds. I became a different person not Jason the person everyone loved.
So, I made the first step…Psychologist. I couldn’t even talk to my family and friends about how I felt because I felt ashamed and would get "It's alright mate you will get over it." NO .. I didn’t want to hear that. My Psychologist really helped just talking about my emotions and letting it all out – it wasn’t easy and it didn’t just happen over night, I wasn’t an easy fix.
In time I learnt to speak up, it's still a work in progress. So I started taking the kids surfing, working out, meditation and taking time for myself. Learning to breath. Breathing! Far out. Just simple breathing exercises really changed my life. Look, I am still not fixed and still have Parkinson’s and there’s a long way to go but I spoke up and that’s the first step and all the love and support from family and friends was overwhelming. There’s so much love out there and you work out you are not alone and everyone is fighting a battle we don’t know about. You just have to ask for help #itaintweaktospeak
Do you have any specific techniques or strategies that you use when you are struggling?
Firstly, I try and eat as healthy as I can. It is so important to have a good diet. A healthy gut makes a healthy mind I believe that. I do stretch classes twice a week.
Meditation has been hard with my tremors and wandering mind but it’s getting easier the more I do it and I actually really get a lot of benefit from it and it really clears my head. Also, sound meditation is something I really enjoy and highly recommend as it takes me to another place. Cold water therapy every day is amazing and really does work for my mind and body.
I exercise every day from weights, resistance bands, bike riding and boxing. I would love to get back into surfing but because of my head movement side to side and the ocean going up and down, it doesn’t mix well but when its flat I grab the mal and paddle!
How did you initially hear about LIVIN and what attracted you to spread awareness for the charity?
I found LIVIN firstly by seeing a sticker… I looked it up and followed LIVIN on social media and love the #itaintweaktospeak because it really meant a lot to me what I went through and am still going through.
I use it as a mantra when I'm down, tired from Parkinson’s or anxious. My youngest daughter become friends with a girl from school whose dad took his life and I could see the pain that was left behind from that. It was a real wake up call. I saw the support LIVIN gave the family which meant a lot to them. So, I was like I have to do something for this cause because so many people just need a little help and maybe going to one of your LIVINWell programs or even just seeing a sticker or the hash tag ITAINTWEAKTOSPEAK, might and will save another family losing a loved one.
Tell us a bit about your initiative Shake, Rattle and Roll and how you came up with the concept?
Well I’ve always been a little crazy with training and so one day I woke up and said I’m going to ride to Sydney and back. At first everyone thought it was just another one of my silly ideas but …NO. I was going to do this for me and others that want to do something but cant due to a illness or disease im doing it for them. My Parkinson’s is progressing quite quickly so the time is now. So the more I talked about it the more people were like what a great idea to help spread awareness and help raise money for LIVIN, Shake It Up and a GoFundMe for funds to have a operation to give me some more quality of life DBS – Deep Brain Stimulation. Also raise awareness about early onset Parkinson’s because most people think it’s an old persons disease.
What sort of training has been involved in the preparation for this?
A lot of time on the bike…… a lot of time. I have always been an active sports person playing footy, surfing, gym and CrossFit so I use all the things I've learnt over the years for strength, stamina and different training technics.
A lot of those things I used to do had been taken away from me due to my Parkinson’s, soreness, stiffness, balance so it's given me the motivation to start trying again. Mentally, far out, it's been really hard to balance working out too much or over doing it and being wrecked for days. Learning to breath and stretch, stop when my body needs a rest… It's been tough I am not going to lie. I will ride to Sydney and back that’s one thing I can promise.
Why do you feel it’s important to spread awareness on mental health for those who may be additionally struggling with a physical illness or disease?
It's so important to spread awareness on mental health for people that struggle with a physical illness or a disease. Being one with a physical illness you go through a stage where you just want to give up, it takes time and support from family and friends to realise that you can still do things. It sounds so easy but believe me it’s hard…sometimes we just need to have a go and by me doing this ride, it might just help someone to make that change and speak up or grab life with both hands and try. That’s all we have to do try, but try as hard as you can. It may not be an easy road there’s no easy road…. So, you have good and bad days, the bad days are the ones that make you stronger.
What are you hoping to achieve with your incredible initiative?
I am hoping I can reach as many people as I can. Show them you can do this. It may not be riding from the Gold Coast to Sydney and back but you can still do things and not give up on yourself, your family and your friends. It's also to let people know that it's okay to feel down or alone even physically, not being able to do the things you used to love doing….YOU still can and you are not alone. Start by talking, make a goal whether its just getting up in the morning. Smile and say "Its okay." I’m okay. I’m still alive and I have people that love me… I can help people, I can help myself feel better.
What advice would you give someone who is struggling with their own mental health?
Well that can be hard when you're in that dark place…believe me I know, I have been there and there’s no easy fix, it takes time. But you have to be the one to make that first step. TALK TO SOMEONE, make that phone call, talk to a friend they will listen don’t think they wont. Its' not a bad thing to put your hand up and say I don’t feel right.
If you would like to follow Jason's journey, throw him a Follow through his social media pages @ShakeRattleandRoll21 on Facebook and Instagram. Check out his full story on his GoFundMe page to help him complete the initiative and spread awareness on two very important causes.