My DBS journey: Feeling afraid, holding onto hope and practising patience

For me, one of the worst things about living with Parkinson’s is knowing that it’s not going to get better. But the prospect of Deep Brain Stimulation (DBS) surgery gave me hope that my symptoms could be eased and my quality of life could be improved. This summer after struggling for so long with the endless cycle that is on/off/dyskinesia and months of waiting and hoping, I finally got the news I was waiting for… a date for my DBS surgery.

At first I was afraid, I was petrified
As soon as I got that call, all of a sudden, the prospect of actually having brain surgery suddenly became very real. As did all the potential risks. I felt scared. I knew in my heart that I had already made the right decision for me, having given it a lot of careful thought and consideration some time ago. I had to keep reminding myself of this every time I felt afraid. It took a couple of weeks, but eventually I began to feel less afraid about my forthcoming surgery and I even began to feel excited about the potential outcome.

When anticipation is worse than the reality
By the time the day of my surgery arrived, I was nervous but just wanted to get it done. Being awake during brain surgery is probably the most peculiar thing I will ever experience. But, it actually wasn’t as bad as I had previously feared. I remember the huge sense of relief and gratitude I felt after my surgery – I was so grateful to be told that it had all gone well. It was also a massive relief that the scariest part of my DBS journey was over and I was able to come home the day after my surgery to begin the recovery process.

Hope and patience
For the first few weeks after my surgery, I was absolutely exhausted all the time and I basically spent most of my time sleeping as my body began to heal from the surgery. I knew it would take time and I would need to be patient. I was mostly focused on how grateful I was to have had my surgery and be recovering at home, especially during the Covid pandemic. The most challenging times for me, were the few weeks that followed when I was no longer sleeping all the time, and despite still taking my usual cocktail of medications, my symptoms were worse than ever, pretty much all of the time. Even though my consultant had told me that I would probably feel worse as I needed time to heal, I started to panic that I would always feel like this, and that the surgery might not have worked, as there are no guarantees. The thing that kept me going was holding on to the hope that when my DBS stimulator was switched on, I would begin to feel better – it was that glimmer of light at the end of a long dark tunnel.

The moment of truth… Switch ‘on’ day
That morning, I wasn’t allowed to take any medication and just getting ready to go to the hospital really was a massive struggle. I just kept on holding on to that hope. And I am delighted to say that I felt a massive improvement in my symptoms when my stimulator was switched on, meaning that my DBS surgery was successful!

Words cannot describe how grateful I am for this. But and it’s a big but, it wasn’t just a case of being ‘switched on’ and that’s it. My DBS journey continued, as after being switched on, it still takes time to adjust the stimulator settings and my medication doses to the right level for me, so that I get the maximum benefit from the surgery.

For the first few days after switch on, I was so excited at being able to wave my hand or butter a piece of bread easily, at any time of day, and not just when my medication is working at its best (which has been pretty much never recently). And so many other everyday tasks that I used to take for granted pre-Parkinson’s were so much easier. It felt like a miracle! I (mistakenly) thought my symptoms would stay like this all the time.

So I admit I was disappointed when a few days later, my right side started to get stiff again and movement became a bit of a struggle. Though, not as much as pre-DBS, I hasten to add.

It’s been a real lesson in patience, trying to find the best settings and medication doses, so that I can function better, while my body continues to heal.

2.5 months after surgery
I still have Parkinson’s. I still have good days and bad. But my good days are so much better than before and even on my bad days, things might be a bit of a struggle but it’s no way near as much of a struggle as before DBS. I have reduced my medication and as a result I have been able to say goodbye to dyskinesia (HURRAY!) and also to my up and down medication cycle which had become so much a part of my everyday life.

I still have this (currently) incurable, degenerative condition and life continues to throw various challenges at me, but because I now have much better control of my symptoms, I feel much more able to cope with whatever life might throw at me. I have hope for a brighter future.

I am so very grateful to my neurosurgeon Mr Low, Dr Misbahuddin and all the team at Queen’s Hospital who carried out my DBS surgery. It really has transformed my life! Thank you so much!

Please note: This is my personal experience of DBS surgery. The procedure is carried out differently at different hospitals. More information about DBS surgery is available on the Parkinson’s UK website.

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