I have Parkinson’s. Here’s how brain electrodes changed my life.

Article By: Tash Clark

Tash Clark underwent deep brain stimulation surgery to treat symptoms of Parkinson’s Disease. She says it changed her life, in positive and negative ways.

I was diagnosed with early-onset Parkinson’s Disease at the age of 35. At the time of my diagnosis my two children were aged 11 and nine. They would ask me if I was going to die. But they both said to me, 'Don’t worry mum, you will always be mum to us'. Throughout their schooling years, they were bullied about me. Other kids would say, 'How come your mum shakes?' Eventually, they wouldn't let me take them to school, which was very hurtful, but I understood how cruel kids can be.

When I was diagnosed I always said that I would not let anyone touch my brain. I would take 100 pills if I had to, no-one was going to touch my brain. This changed several years later when I told people about my diagnosis. After talking about it more, I realised I needed to do something if I was going to enjoy my children growing up. I was finding myself unable to walk safely, my balance was poor, and I was often too fatigued to carry out my daily routine. So, I went to the Flinders Hospital to start the work for the Deep Brain Stimulation operation which took over 12 months to prepare for.

The work-up to the surgery was very intense, with several trips from my home in Tumby Bay (on South Australia’s Eyre Peninsula) to Adelaide. I had to see a psychiatrist and psychologist to assess my mental state, test medication, and take scans and MRIs to make sure they were putting the electrodes in the right position.

Then the call finally came - they had a date for my surgery. I prepared my family the best way I knew how and re-did my will, planned my funeral service and probably the hardest thing I did was write a letter to my husband and children, only to be given to them if I didn’t make it through the surgery.

The night before surgery in 2016, when I had to say goodbye to my children and husband, it was very tough, but I am truly very grateful to my team of amazing people that took care of me. Thankfully I made it through the surgery with flying colours and I will be forever grateful to the team at the Flinders Hospital.

Two electrodes were placed deep in my brain, sending signals to the battery on my upper left chest area. Once the system was switched on, the change was instantaneous. I was able to walk well, my balance and coordination improved, my speech became clearer and less slurred. Physically and mentally, the improvement was incredible.

It was a little rough for the first 12 months - backwards and forwards to Adelaide for adjustments to the stimulation but when you get it right you feel amazing. You actually feel like you have another chance at life, until the honeymoon period is over. Then reality hits you.

One thing I have always said since my surgery is that I don’t feel the same person anymore. It’s hard to explain or even understand but it’s a feeling that is very real. I don’t feel attractive anymore, I’m self-conscious about how I walk and my self-image has really been affected. I think I’ve also become less empathetic and find it difficult to relax - I’ve got to be on the go all the time. I only go out when I am feeling good and looking good, so what my friends and family see is sometimes not me.

Then a few years after the surgery I attempted to take my own life a few times. These were all split-second decisions, they weren't a cry for help, it was an end to a struggle. I think when you live in constant pain it takes a hold on you. All aspects of Parkinson’s is a struggle: walking, talking, everything.

I am now learning how to look after my mental health by exercise, bike riding, swimming, going to the gym and walking my little dog, Raffi. I am hoping that I can continue to keep on the same track as I am at the moment and that I am able to keep those deep, dark thoughts at bay.

When I look back at my journey I can see that the surgery has changed my life in so many ways - some positive and some negative. I know that if I had not had the surgery, I wouldn’t be able to do what I do now as I don’t function without it - simple as that. The physical benefits of the surgery far outweigh the mental effect if you keep a good check on everything, know the signs and take note of how you are feeling. I am also the support co-ordinator of the Eyre Peninsula Parkinson’s Support Group. While I am helping others, I am not thinking of myself.

Today I am adjusting to having a support worker with me every day except the weekends. I am grateful but it’s hard to have someone come into your home and help as I am a very determined, independent lady. My home is now also being modified for me to make life easier for when I am not so mobile.

Today, I look at Parkinson’s disease as a lifestyle challenge, not a death sentence. I try to stay positive and make the most out of every day and I believe I was given this challenge for a reason.


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