Living with young onset Parkinson’s: Loose ends

Wednesday 26 May 2021

For those who subscribe to this blog and follow the story, I’m conscious that there are a number of threads that are still unfinished, loose ends if you like. That’s the nature of the beast: some things just drag on and a few of them perhaps will never get resolved. 

My genetic testing may
be one of them. I had my genome sequenced nearly four years ago, but at my
latest appointment with The Professor this week, there was still no news. He
assured me that his team are actively researching my family history, which may
well reveal a hitherto undiscovered genetic risk factor. But I also have to be
prepared for the possibility that they may never find it.

Rosa’s trigeminal
neuralgia is another thread with no end in sight. There was some good news on
this last week though. She has been referred to a specialist facial pain clinic
at St Thomas’s Hospital in Central London, probably the best place in the
country for her condition. She got seen by a team of four different doctors,
has been given some new medication options, and will be booked in for an even
higher resolution scan than she has already had. Still a long journey ahead,
but some progress at least. Thankfully the current drug regimen is keeping the
pain under control for now.

Then there is the
Parkinson’s itself. The Professor asked me if I would be interested in
participating in another clinical trial, only this one would involve regular
lumbar punctures to take samples of spinal fluid. Ordinarily I would volunteer
for anything. But this time I was reluctant. All the trials seem to lead
nowhere, and the results of ones I’ve participated seem to cross the event
horizon of some medical black hole, never to be seen again. So having several
needles in my spine for probably no useful outcome didn’t appeal.  I said I would think about it but The
Professor could tell which way I was leaning.

Some things do come to
a conclusion, however, like my decision to retire in a little under three
months’ time in order to pursue a new venture into neuroscience.

On a more administrative
topic, I’ve been notified that the email subscription service that this blog
uses will no longer be available after June. This means I won’t be able to take
on any new subscribers, but for the existing ones, I propose to keep you
updated on new posts via a personal email; if you’d rather I didn’t do that,
just let me know via the contact form.

Finally, there is one
other item that will shortly reach a conclusion. Over the past few months I’ve
been writing a book based on this blog and it’s almost ready for publication.
Watch this space!


Source Link


This blog is for information purposes only. The content is not intended as medical advice, diagnosis, or treatment. Should you have a medical or dermatological problem, please consult with your physician. None of the information or recommendations on this website should be interpreted as medical advice.

All product reviews, recommendations, and references are based on the author’s personal experience and impressions using the products. All views and opinions are the author’s own.

This blog post may contain affiliate links. An affiliate link means we may earn a commission if you click on a link and make a purchase, without any extra cost to you.

Please see our Disclaimer for more information.

diseases, diagnosis and treatment methods, drugs and their side effects on this site. online diseases, diagnosis and treatment methods

Related Articles

Back to top button
%d bloggers like this: