268: I’m a lumbarback and still OK….

Back bruised … probably more comfortable without the dressing… 

But I waved aside the lumbar puncture FAQs … this is my third, after all … and now I can’t remember how long you need to keep on the dressing.  

It’s probably not very long. I’ve already ripped off the dressings from my arms; bruising up nicely, I see. The back’s just a puncture wound, like my arms, isn’t it? So I probably could take off the dressing now; almost certainly could take off the dressing now.   

But I have images of spinal fluid gushing out over our new sofa covers and I can’t quite bring myself to pull off the dressing, though it is jolly uncomfortable.  

Shall I phone the hospital? They did say to call if I have any worries. But it seems a bit pathetic, calling the National Neurological Hospital just to ask about a plaster.  

So I turn to Aunty Google and fetch up on a patient forum where people are sharing their experiences of having lumbar punctures and, heck, it’s not a read for the faint-hearted. 

“I was poleaxed by headaches, sweats, trembling and light-sensitive eyes. For the next 8 days I was basically unable to stand up for longer than 30 minutes. It was horrible…” says one poor soul. 

“I didn’t lie flat for long though and ended up in A and E,” says another.   

“Excruciating  headaches,” reports a third.   

I’m very grateful that I didn’t come across this forum before having the lumbar punctures. Maybe I’d have changed my mind about volunteering for the trial – who knows?  

I consider adding some balance by reporting that my two previous lumbar punctures were fine: took it easy for a couple of days, drank lots of coffee and water, as right as rain.  Oh and can someone remind me how long to leave the dressing in place?   

But to make this comment, I’d have to jump through the hoops of registering on the forum. So, of course, I don’t.  Instead, I phone my research team at the hospital and yes, I can take off the dressing. 

So that’s it: the Ambroxol trial done and dusted.  There’s a wash-up in June, with an initial feed back on the trials results. I’m quite convinced that the drug had a significant impact on my tremor but all sorts of things can affect Parkinson’s, including expectations. I’m really hoping that there’s the will and – crucially – the finance to move into a more extensive trial with a double-blind placebo and all the rest. 

I’d definitely be up for volunteering again.  Yes, on the one hand, there will be tablets to take, and blood tests, and perhaps more lumbar punctures. But, on the other hand, there’s the chance to help in finding a treatment for Parkinson’s.  Which would be very cool and groovy. 

I’ll let you know as soon as I hear anything. And note to self, it’s fine to take the dressing off after a couple of hours. But a couple of days lounging on the sofa reading novels or watching the birds in the snow is absolutely essential. Doctor’s orders. 

***

Hope you also have time for some snow watching. I’m off to Yorkshire for a week tomorrow and am promised bracing weather.  Have a good week.

***

The Ambroxol trial was one of a number being funded by the Cure Parkinson’s Trust.  You can help with this at no cost whatsoever to yourself everytime you buy online from Amazon or John Lewis or Ebay or … well, lots of places through GiveAsYouLive.  Register in seconds here.

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