I began my DBS (Deep Brain Stimulation) journey a couple of months ago. I’ve now been through the assessment process to see if I am suitable for this brain surgery – which although not a cure for Parkinson’s, has the potential to greatly improve my quality of life. The assessments involved an MRI scan, cognitive tests and something called the Levodopa challenge – where I had to attend hospital without my usual daily cocktail of medications, carry out a few simple movements and then take some medication (Levodopa) and repeat the movements to see how I respond. It sounds simple enough, but I actually found it all quite draining physically, mentally and emotionally, which made my symptoms and side effects worse. This reminded me (not that I really needed reminding) why I’m hoping for DBS in the first place. I’m grateful to have completed the assessments. And now I am just waiting and hoping.
I feel like I’ve been waiting and hoping for some time now – in fact, since I first discussed the possibility of DBS with my consultant several months ago. Waiting for the assessment process to start, and now waiting and hoping that I will be considered suitable for this potentially life-changing surgery. If I am suitable, I’ll then be waiting for the surgery, and hoping it will be successful, as there are no guarantees and it is not without risks.
This time of waiting for me, coincides with the global Coronavirus pandemic. We’ve all been waiting and hoping for a vaccine for several months, but hopefully there is now light at the end of the tunnel.
Since the start of the pandemic, I haven’t been able to sing with my choirs in person as I used to. But I am grateful to have still been able to sing and to create music together, even if we have to do things differently. The most recent video by my virtual choir, The Dialing Tone Chorus – led by Gitika Partington – has increased my awareness about something which must be a completely different experience of waiting and hoping.
Drowning. I can’t even begin to imagine what it must be like to be drowning and waiting and hoping for a lifeboat to arrive and rescue you.
“Drowning is a serious and neglected public health threat claiming the lives of 372,000 people a year worldwide.” (World Health Organisation, Global Report on Drowning: Preventing a Leading Killer, 2014).
With our new video of the beautiful song All at Sea (by 3 Bucket Jones), The Dialing Tone Chorus is fundraising for and raising awareness of the charity, Atlantic Pacific whose mission is to tackle this crisis and eliminate death by drowning by providing Lifeboats and trained crew to areas of need.
For more information and to view our new video, please visit:
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I had brain surgery in March this year and I’m still a work in progress I’m still shaking on my left side and I still have pain and dystonia and dyskinesia but I’m hoping it will improve, but because of the pandemic I haven’t been able to have much tweaking done in to my stimulator.. sending you all my very best wishes for a good outcome x