I was diagnosed with Parkinsons about 5 years ago although I've had symptoms for about 15. To begin with, it was okay and I lived a relatively normal life although I had to give up my job as a teacher. The drugs controlled the disease but lately, they've been failing. Sometimes I take them and they work, but all now too frequently, they either don't work at all or work for an hour and then I'm back to square one. I have a fairly insidious version of Parkinsons in that I don't 'tremour' but move slowly. When I'm unmedicated it's like I'm moving through mud and recently, I have frequent periods of the day whereby I just can't move at all and sit waiting for the drugs to kick in. Additionally, you have to take them two hours after food or else they don't work which means that even if their effects were reliable, I'm often not able to take them as eating is something we all have to do!
So I've had enough and want to journey to a clinic in Switzerland who are sucessfully pioneering a new treatment involving a process called Focused Ultrasound. This is much better than the present surgical option which is Deep Brain Stimulation. This latter procedure is mostly successful but isn't always and there are inherent risks with it as it's invasive surgery and some patients suffer non-reversible strokes and infection. In addition, it's more suited to the tremor dominant Parkinson's patients.
This Swiss procedure isn't available on the NHS, and unfortunately, money is tight these days. My wife decided to go part time as a teacher following her own health concerns, and despite my only income being my teacher's pension, as a couple we are required to support our daughters who both started university last year.
I do hope that you can support me in achieving funds for this procedure. I attach a Youtube flm of an acquaintance of mine who recently had the procedure carried out.
How the Procedure Works
In laymans terms, the ultrasound process destroys the diseased parts of the brain that have gone 'haywire'. (These 'destructions' are tiny! The size of a pinhead). The head surgeon at Sonimodul Clinic claims that the problems that begin in the part of the brain that produces dopamine gradually spill into other areas until there is a sort of 'storm' which causes neurons to fire uncontrollably. This is why eventually, the ingestion of dopamine replacement drugs alone become redundant: there are just too many parts of the brain at this point involved for augmentation of man-made dopamine to quell the torrent of confused signalling.
Why is this procedure only carried out in Switzerland?
As far as I can tell, the concept of destroying nerves in the brain was a procedure during the 1970s and this was called 'ablative surgery'. Unfortunately this procedure often went horribly wrong, as in trying to destroy diseased parts of the brain, surgeons often destroyed healthy parts of it by accident as well due to the invasive nature of the surgery. This imperfect approach was superseded by Deep Brain Stimulation which sinks wires into the brain and uses a battery which acts like a pacemaker, and is inserted into the patients chest. Dr Daniel Jeanmonod, a Swiss neurosurgeon decided in 2010 to revisit the ablative appraoch but using ultrasound which carrys none of the risks associated with the discredited surgery of the 1970s.
Unfortunately, too many Neurologists and neurosurgeaons are living in the past. They hear 'ablation' and they are reminded of the butchery from yesteryear. In addition, DBS has got its feet so firmly under the table that it'll take a generation to wean the neurological community away from it. But if I have the choice of having wires burrowed deep into my brain with the accompaniiement of a cable that runs downs to my chest, or a procedure that is carried out without the need for access inside my skull, I'm going to choose the latter.