MRI brain scans

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

Ever since I was diagnosed I’ve volunteered to take part in several of the MND research projects being run from the neuroscience department at the John Radcliffe Hospital in Oxford. Up to now this has mainly involved giving samples of blood and cerebrospinal fluid and taking various memory tests.

Today was different. I went to the Oxford Centre for Brain Activity and spent over an hour in an MRI machine. They took many scans of my head at different settings to image different components of my brain. One of the experiments involved reacting to various symbols flashed on a computer screen for fractions of a second and pressing buttons accordingly; this was partly a test of reaction speed, but other things as well I believe. The parallel MRI scans showed which bits of my brain were active during the experiment.

The attached photo was taken just before I was slid into the machine.

Doug about to start.jpg

All great fun, if noisy!

Doug

[Deb Forum Member Find all posts View Profile Close Deb]

Well done Doug for taking part in this research.

I have had several MRI scans and hated them and a lumbar puncture is not a lot of fun either.

You should be proud of yourself for taking part in this research and one day, I am sure it will help someone.

Love Debbie

[Kayleigh Forum Member Find all posts View Profile Close Kayleigh]

You have my admiration Doug.

Lots of tests, and today a whole hour in one of those tunnels - I wish I was as brave as you. I hope that they gave you a nice cup of tea afterwards!

Many thanks for your wonderful contribution to medical research.

... and hopefully you were able to have a glass or two of your favourite wine this evening - you definitely deserve it!

Cheers!
Kayleigh x

[Barry52 Forum Member Find all posts View Profile Close Barry52]

Hi Doug,

I am impressed that you put yourself through all this. I do hope that what you have done has benefits for for our community.

Best wishes,
Barry

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

Thanks Deb, Kayleigh and Barry.

It really wasn’t difficult, especially compared to what many of us face every day. Sure, a bit noisy, but no more so than working with loud machinery. I’m just pleased I’m still mobile enough to do it.

We were talking elsewhere about drug discovery. That may be the glamourous bit, but building up a picture of what is actually happening inside an MND patient’s head, compared to a normal person’s, is equally important.

But the main thing is, as a scientist, I get a real buzz being around brilliant people who are passionate about their research. And, believe me, this team are!

One day…..

Doug

[Ellie Forum Member Find all posts View Profile Close Ellie]

I’m just pleased I’m still mobile enough to do it.

Hi Doug,

Don't worry about mobility issues, they've special wheelchairs for the likes of me who cannot walk, and the chair won't fly into the magnetic scanner

I have regular brain mapping MRIs and am wheeled alongside the scanner, then transferred onto the table.

Good luck with the research.

Love Ellie.

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

Thanks Ellie.

That's very helpful to know.

Do they tell you what they learn from your scans - in principle not personally I mean.

Doug

[Ellie Forum Member Find all posts View Profile Close Ellie]

Doug, I get to see my scans and the Lead Researcher talks me through them in some detail - I am interested in what I see and the researcher responds.

The most interesting find on my scans is … NOTHING!!! There are no abnormalities whatsoever on any of my scans, which are also sent (anonymised) to the Head of Radiology for analysis and all have come back as a “perfectly normal brain”.

I do get personal feedback. The research I do tries to find any person-specific brain mapping changes and I do a raft of clinical and psychological testing before each MRI,so there are benchmarks against which to see any corresponding changes in my brain. So, the feedback I get is both specific to me and I also get feedback on any findings on the project in general.

Even after more than 12 years with ALS, and being at an advanced stage, there is not one clue from brain imaging that I have a degenerative neurological condition.

Love Ellie.

[Terry Forum Member Find all posts View Profile Close Terry]

Hi Doug and Ellie,

I would find it really hard to do what you both do and so impressed.

Like you both, I like to know what's going on.

Love Terry

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

Many, many thanks Ellie.

Not surprised. We always knew you have a brilliant brain!

Seriously though, that's amazing and baffling at the same time. But it also highlights the complexity of MND doesn't it. And how much is still not understood.

I haven't had any feedback from the researchers yet, but, before it started, somebody mentioned that very subtle changes may have been detected in reaction times - my words not theirs - in MND patients. Hence all this button pushing I was asked to do.

I also got the impression that they felt good progress was being made in understanding the neurology of the C9orf72 type of MND.

Doug

[miranda Forum Member Find all posts View Profile Close miranda]

As well as being involved in research while we are still alive, we can donate our brain and spinal cord after death. MNDA have a resource sheet 'Tissue Donation'. Obviously it's important to discuss this with our nearest and dearest before completing the documentation.

[Barry52 Forum Member Find all posts View Profile Close Barry52]

I have done mine Miranda and my GP sent me an updated Respect form which relates to care planning.

Barry