As it’s coming up to seven years since the day I was diagnosed with young onset Parkinson’s disease, this blog is about where I’ve been on my Parkinson’s journey for the last year or so, and what may lie ahead.
When you’re on five types of Parkinson’s medication, taking more than 10 tablets a day, and your side effects are pretty much as bad as your symptoms. And there are no more medications left to try. I reached this point about a year ago.
I knew about Deep Brain Stimulation (DBS) – of course I did. I even knew it might be a consideration at some point. But I always thought it would be a last resort when things got really bad and much further in the future. So, when my Parkinson’s nurse asked me if I had thought about the possibility of DBS, I wasn’t expecting it. Even though I had been really struggling with my Parkinson’s for several months now, and despite trying higher dosages and new medications, I was still struggling.
When I thought of the prospect of brain surgery, this was always at the back of my mind… When I was 19, I had an operation to remove a growth on my pituitary gland. It was major surgery, with a lengthy recovery process – which also meant I had to take a year off university. It was certainly one of the most challenging periods of my life. But I’m very grateful that the operation was successful, and the growth turned out to be benign. So after several years of monitoring and scanning, I was discharged from the neurology department at my local hospital.
In my head, because I had already experienced major brain surgery, I just didn’t want to go through that again. Even though it’s a completely different situation and operation, it’s still brain surgery for goodness sake!
When you can’t see the wood for the trees
My mind was full of doubts and details. There’s an intensive assessment process, I might not even be eligible, even if I am, what if it goes wrong, all operations are risky, or what if doesn’t even work after all that? Some wise words from my nurse made me realise that I was so focused on the process of the actual operation, I wasn’t even considering the bigger picture – the fact that if successful, it will improve my quality of life dramatically.
Although it isn’t a cure and won’t stop progression of my Parkinson’s, what it could do is really help to control my symptoms and reduce the amount of medication I take, which in turn would reduce the side effects. And given that the main thing about my Parkinson’s that I find most difficult to bear is dyskinesia – a side effect of my medication – that would most definitely improve my quality of life.
So after much reflection, I decided that if DBS is an option for me, I have to take that opportunity, even if there is a risk it might not work. It gives me something I didn’t have before – a realistic hope that my Parkinson’s could be easier to live with and my life could improve.
I made that decision earlier this year after seeing my consultant who explained all about DBS and put me on the waiting list for the assessment process. At the time, waiting times weren’t that long, but soon after, Coronavirus hit and everything changed. As a result, I put the prospect of DBS to the back of my mind. However, I am still on the waiting list to start the DBS assessment process and have started to think about it again recently.
Although it’s been delayed due to Coronavirus, even just the fact that I am at the beginning of this process, gives me hope for a better future. And I mean real hope, as opposed to me just wishing I didn’t have Parkinson’s. The truth is Parkinson’s is a progressive disease, and my Parkinson’s is going to get worse. So, with my current medications, not only is this ‘as good as it gets’, it’s going to get worse. But if my medications could work at their peak for longer periods of time without the ‘wearing off’, if I could be constantly ‘on’ rather than ‘off’, that would be like a miracle for me! And if I could get rid of the dyskinesia, that would be the icing on the cake! If I am eventually assessed as being suitable for DBS, and if it is successful (two pretty big ifs I know), this could be my new reality, which is actually quite exciting.
The future’s not ours to see – Choosing hope over fear
I’m still on the very first steps of my DBS journey. And for all I know it might be a very short journey, as I haven’t even had the assessments yet. Of course I have fears about DBS, it is brain surgery after all. But going down this path, there is real hope. And so I’m choosing to take this path, and see where it leads me on my Parkinson’s journey…
Blog 100
As this is my 100th blog, I would like to say thank you to everyone who has read any of my blogs, especially those who have been following my Parkinson’s journey since chapter 1 and have read all 100 of my blogs! And a special big thank you to all of you who have encouraged me with my blogs. When I started blogging four years ago, I never thought I would still be blogging, 99 blogs later! I hope to continue blogging and sharing my experiences of living with Parkinson’s. Watch this space for blog 101!
Further information
You can read more about Deep Brain Stimulation on the Parkinson’s UK website.
There is lots of research taking place to find better treatments for Parkinson’s and hopefully, one day, a cure. If you would like to support this research, you can help by making a donation to:
Living with Parkinson's 
Hi Angela, Hope this finds you well. I loved your recent blog about DBS – your openness and bravery are truly inspiring. I hope your wait on the list isn’t too long. Best wishes, Peter x
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