Imperial College London

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In September 2022, I was invited to take part in the IC3 study at Imperial College London that looks at cognitive performance after stroke. (www.ic3study.co.uk)”

Storm Anderson, part of the PLORAS Team, put me in touch with the team.. I had spent some time with Storm, talking about the last couple of years and the progression that I had made, post Stroke.

University College London and Imperial College London are trying to investigate how  people who have had a stroke recover using brain MRI scans and tests.

I filled out the registration online and then had an email from Dragos, PhD Candidate, who told me what to expect about the next steps and looked forward to a phone-type interview with him.

The phone interview involved an online test that I could do at home. It took approximately 60-90 minutes and I was allowed to take built-in breaks.  There was going to be a couple of tests that will record your speech so that they could estimate your language ability. During those tests, a question would pop up at the beginning, asking me to allow access to my microphone.

When I was finished I had to send the code at the end of the assessment for their records and to analyse the answers.

After a couple of weeks of completing the online test, I received an email from Dragos which had some other questions:-

  • How did I find the assessment ?
  • How did I find some of the tests that were quite hard and a bit tricky or where there tests that I found confusing or hard to complete ?
  • Did I use a tablet, computer or laptop to do the tests ?
  • If I did use a laptop, did I use a mouse or a touchpad ?

I responded that the assessment was really good and really knowledgeable from the time that I had a stroke, up until now, to see. how I have progressed ( in my head ….. lol)It may sound weird but in my brain, I can think things at the same rate as other people, but translating into sounds coming from my mouth is a bit tricky but after 7 years, again I have improved since doing the assessment.

I found there were 2 tests that were a bit challenging, the test where there were squares and round shapes and a test where there were different shapes and I couldn’t repeat it when they had shown me the first time but again I hope that in time I will find they become easier, it Is a learning curve.

I used my laptop and a mouse. So, all in all, I found it very good.

Imperial College London

At the end of November, I had an email conversation to see if I was happy to take part in MRI session. The session was going to take approximately, 1 and a half hours. there is a research scan and a clinical scan that examines your brain health and function and one of the neuroradiologists would review it to see if there are any new unexpected findings

So, in December, I went the Imperial College London and was met by Dragos and Gaya.

I had some forms to fill out with them and that explained again the next steps and the reasons for it.

Obviously, I had questions but Dragos and Gaya answered all of them so I felt very ok went I went into the MRI Scan.

I was also interviewed by Dr Fatemeh Geranmayeh, an Honorary Consultant Neurologist and Clinician Scientist who was also updating the file that they have on me as this was the first time that I had been to the hospital and were talking about the Stroke before and after the MRI scan so that she could have the whole picture.

Dr Fatemeh Geranmayeh

In the MRI Scan, I had earphones on and a clear visser to put over my eyes.

On the screen was a picture, then a voice said when the picture was. Then on the screen it said repeat and I had to say what the picture was. There were sets of pictures that were easy and sets of pictures that were very difficult.

At each time when I had done 6 pictures, they sped it up and I had to say what the picture was (with no reference to what it was) and each one lasted 3 seconds, each time.

This was to see if I had memory and speech about the pictures and how my brain has developed since I had my stroke.

After coming out of the MRI scan, I did a couple more tests in the lab with Dragos and again I answered questions about my stroke with Fatemeh.

Dragos Gruia

I had a really good day and the team at Imperial College London was fantastic. The  results from the neuroradiologist has reported that there is no new lesion or abnormality apart from the old stroke in the left side of my brain.  I am looking forward to the next tests/MRI in the summer from the college.

If you or anybody wants to know more about cognitive recovery in patients with cerebrovascular disease , then please click the link below

https://www.ic3study.co.uk/

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Invitation via zoom from Australia

I was invited to a focus group as a research volunteer for a project between the Collaboration of Aphasia Triallists (CATs) and Aphasia Recovery Connection (ARC) for people with Aphasia led by Dr Emma Finch, a Conjoint Senior Research Fellow In Speech Pathology from The University of Queensland and Princess Alexandra Hospital, Australia.

There were 20 people from the UK and it involved the group watching different videos about Aphasia and then voting on different features of the videos (e.g do you like slow talking speed, do you like captions etc)

I found it very interesting and food for thought and I thought I would share some of the Aphasia answers on Youtube channel with you all.

Is more treatment better?

https://www.youtube.com/watch?v=r9kh2nKEKIQ

Brain stimulation and aphasia

https://www.youtube.com/watch?v=OtfzInnpTCo&t=150s

Depression and aphasia interview

https://www.youtube.com/watch?v=yBkxiDqVAbo

PLORAS (Part 2)

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( Predicting Language Outcome and Recovery After Stroke)

In December 2019, I was invited to return for another brain scan. It involved doing language tasks in the scanner. For some tasks there were pictures and words that I had to look at inside the scanner. For other tasks there were sounds or words I had to listen to. I was asked to respond to these by talking out loud. There were also a few tasks where I was asked to make a decision about the pictures or words by pressing a button. I could still use my good arm for the left or the right button to say which one it was.

They were particularly interested in how the brain recovers after brain damage. They compare the brain structure and activity in people who have and have not had brain damage.

Shumi, from the PLORAS research team explained  firstly that there was a practice task session (outside the scanner) so I knew what would be going on in the scanner when I did it. I would then do a hearing test and then we would go into the MRI room where I would lay in the scan for about 2 hours, doing the actual tasks (there was 14 of them). 

There was a form that I had to sign, the study title was The Neural Basis of Language and Object Recognition and like before, when I went for PLORAS for the first time, there were questions about the MRI etc again

Also Shumi said, that at any time I could say that I had, had enough and leave the trial. My participation was voluntary but they hoped that their research will ultimately be used to help others to recover after brain damage

We did the tasks the first time.  Shumi talked me through them and then I would do them (hoping  that I was going to get it all right !) however, I didn’t lol, not all of them anyway. 

Part of my Aphasia means that sometimes I can say it in my head but I can’t speak it and its frustrating because it happens and I get annoyed with myself . However, sometimes, I can say it all perfectly and no one would be aware that my speech was a little bit lacking !

However,  when I couldn’t speak,  it would be interesting for the researchers to see what my brain was doing and the signals that it was receiving (or not !)

One task that I struggled with, involved listening to lots of noises ( e.g a machine gun, a bell, a dog etc – about 20 of them) and I had to say what the noises  were.  Outside of the scanner even though we did it about 3 times, there were about 4 or 5 noises that I couldn’t get .Then inside the scanner with the same noises again, there were the same 4 or 5 that I could say in my head but again, I couldn’t say out loud.

Anyway, we did the hearing test and then I went up to reception for ½ an hour to have a break.

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I went down to the MRI for about 2 hours. Up above my head was a screen which the different tasks were displayed on. Because the scanner is noisy, I had to wear some ear plugs. Each time, Shumi checked that I was ok and that I wanted to carry on,  before we did the next task.  It was important to keep my head in the same position. If my head position changed we had to wait for the scanner again to line it up etc.

Then once I had finished the tasks, they took loads of pictures of my brain, for 5 mins where my eyes were shut and 5 mins whilst they were open.

I tried to remember the tasks that I did do and the tasks that I didn’t do so well but like Shumi was saying, it was to see how my brain would react for all sorts of reasons.

So, I completed the tasks which was all good.  I was tired and it was a long day in London but again I was pleased that I had done it for the future Stroke patients.

The results will be used in future research papers and will ultimately be used to help others to recover after brain damage.

 


iReadMore: Word Reading Therapy App

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On Monday 29th October 2019, I went along to the UCL World Stroke Day and had a demonstration of iReadMore from the Neurotherapeutics Group, Institute of Cognitive Neuroscience.

iReadMore is an app-based therapy that improves reading speed and accuracy for people who have language problems after a stroke that involves matching written and spoken words.

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Fast-forward to December 5th 2019, I was invited to take part in a focus group to help design and test iReadMore before they release it in 2020.

Three other participants and myself tried it out and then had time to talk about what we liked about it (or didn’t!) and ways that it could be changed to improve it.

The PhD Student, Tom Langford, talked us through it and Dr Victoria Fleming (researcher) helped me get started. There were 2 parts.

The 1st part was called the ‘Exposure Phase’.  We had an Android tablet each and a set of earphones, so we could concentrate on the task. There were some cards on the screen and we had to pick each one and turn it over but you only had to watch and listen.

The 2nd part was the ‘Challenge Phase’. You had to read the word on the screen and listen to the word (either the same word or a different one). If the written and spoken words where the same, you had to press the green button. If they were different from each other, you had to press the red button.

Before my stroke, I never liked looking at instructions to tell me how something was put together, I just tried it and then looked at the instructions afterwards, just in case!   That’s just how I was !

Now, I have to tell myself to read the instructions first, otherwise my brain doesn’t know the correct route.

I sat down with my tablet ready and earphones on, ready to go and waiting for the next step. What I was supposed to do next was just like everybody else, to read the instructions first from the leaflet and then play with the tablet, but I just sat there waiting for a minute and in the end saying “what do I do now?” to Victoria.

Luckily, Victoria took me through the 1st part and then I could work out the rest of it. I definitely need to change the order in which I do things now (I have picked up a few in the last year) to train the brain again!

Once we had done it a couple of times then we had a chat about the various things that we liked/didn’t like etc. We all had a say and between all of us, we bought a lot of things to the table which were food for thought for the iReadMore team.

I thought the session was extremely good and it really got my head buzzing in a different kind of way. I was a Salesperson/Manager for 20 years before my stroke and after as well and it has a different, exciting new direction on things, especially when it come to the release date, then I can talk about it to my Stroke Survivors friends!

If you want to find out more about iReadMore, please go to: https://www.ucl.ac.uk/icn/research/neurotherapeutics/therapy-apps

MOCAS Study or MOvement Control After Stroke

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(or Robotic Arm !)

This time, I was invited to take a 2 day trial – voluntarily, for The MOCAS Study or Robotic Arm by Dr Angelo.

A lot of people who have had a Stroke have suffered damage to the part of the brain that controls movement in the upper limb (arm and hand), so that you can no longer use it as you could before, which I definitely have.

I met Dr Angelo on the 5th November 2019 and he explained the study.  He told me that there was no direct benefit for me taking part, in the sense that I should not expect my arm to change, but that the information that they will gain will improve our understanding of how people can continue to recover from their stroke in later months and years and may guide future development of treatment and services for all stroke survivors.

They were different criteria for who gets invited and I fell into the one that said :-

25 participants (like me) who suffered a stroke at least 3 months ago and are no longer under the care of a stroke team, but who have lasting problems with movement in one arm or hand, and will NOT be attending the upper limb rehabilitation programme and have never had any intensive rehabilitation for the affected arm or hand

Recent clinical and scientific studies have shown us that an intensive upper limb rehabilitation programme may also help reduce chronic arm and hand weakness and disability for people whose stroke occurred at least 3 months earlier.  It is important that they understand how this is happening so that they can improve upon their knowledge of how people recover from a stroke and provide the best possible treatment at all stages of the recovery process to ensure the best possible outcomes for all stroke survivors.

Dr Angelo advised me what to expect, that the first session would last approximately 60 mins and the 2nd one (3 weeks later) about 45 mins

At each session, they will take some simple clinical measurements of the size, strength and range of motion of your arms.  Then they would ask me to perform some simple reaching movements and behavioural tasks that allow them to make accurate measurements and assessments of various motor control processes occurring in the motor pathways between my brain and my upper limb.

Finally, Dr Angelo tasked me to complete a very short questionnaire about my levels of attention and concentration, fatigue, and the severity of any pain or stiffness that I may have.  This is because these factors may also affect your motor control processes.

Robotic arm reaching task

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I sat in a high-backed chair with my forehead resting on a headrest in front of a workstation housing a robot controlled arm (pictured).  I then had to place my left hand on the ‘Robotic Arm’.  Moving the handle of the robotic arm controls a cursor displayed on a horizontal computer screen, positioned so that you cannot see what your arm is doing.  It allows you also to take the weight from the arm and actually it allows you to feel normal again (until the straps are taken of and the arm goes back down to the side !!!!) but hey ho !

He then asked me to make repeated simple reaching movements to move the cursor between selected targets and at different speeds.

The robot makes precise measurements of your reaching movements, such as the position of the arm, the speed of the movement, or the force with which you move the arm.  They will analyse this data once I have finished testing to learn about the motor control of my arm.  Also they will test my ability to adapt to changing conditions by asking the robot to interfere with the movements that I make towards the targets.

So, Dr Angelo placed my left hand first in the robotic arm (which I have to say was fine – phew)

Then he put my right arm in the robotic arm……So, in my head, there was a 360 degree  invisible target,  with my right hand in the centre of it.

I could reach (in a wobbly kind of way ) the targets for the left  side.  I did the targets on the right hand side, but (probably between 2 o’clock and 5 o’clock), I went to the targets but not inside the targets before the robot dragged me back.  Sometimes it did it but sometimes not. Dr Angelo said it was that I could not extend my muscle.

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We recorded the trial and then I came back on the 22nd November to do it again.

It was weird because the targets (between 2 o’clock and 5 o’clock)  this time on the second attempt were better……

So, the two days of the trials for me was exciting (I know now what a type of Robotic Arm looks like) intriguing to see how they do the trials but most importantly, the research that goes with it for each of the criteria .

Testing motor control behaviour with the robot- controlled arm is a well established , non invasive method which will not cause anybody any harm and, once the study is complete, there will a summary report of the main findings.

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PLORAS

( Predicting Language Outcome and Recovery After Stroke)

I was invited to take part in a research study called  PLORAS on 28th May 2019.

The study  include’s  hundreds of people who have had a stroke.  They carry out a Magnetic Resonance Imaging (MRI) scans of their brain and assess their speech and language with some tests.

Then, they will then find patterns between the exact area of stroke damage in the brain and each person’s speech and language abilities.

It will help them to understand: –

·       Why some people have difficulties with speech and language after their stroke and others do not

·       Why some people quickly recover speech and language after their stroke, but others take much longer.

I was very happy to do this and contribute to the research.

I took the train to London Victoria and then a taxi and arrived in plenty of time at the Welcome Centre for Human Neuroimaging in Queens Square opposite the National Hospital of Neurology and Neurosurgery where I went to do the Stem Cell trial, nearly 2 years ago.

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Kate was really nice and told me what I would be expecting through out the day. Obviously there was some paperwork to do about my history etc and then we went to the MRI scan.

Afterwards, we went back to another room and we did loads of tests with the computer. It lasted about 2 hours.

There was a language assessment, I  got given some tasks that would involve some speaking/ understanding/reading/writing and cognitive (thinking) also, what happened when I first had the Stroke, then a month after, then a year after and now.  Also, there were some questions about my stroke and my recovery

eCAT (2)In a way, some of the questions and answers made me think that I actually was pleased with myself, that I have come a long way.  My arm, leg and my speech still keep improving, every month.

So, the experience was a positive one, even thought I knew it would be for other Stroke patients but I was pleased with the whole day.

It will take a number of years to complete the study but it will be good for new Stroke patients to help, or predict the recovery of those who have similar strokes and language abilities.

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So, the tube…….

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Now the problem is, at the moment, I can’t go up and down the Escalator and I intend on going to a Shop (when its quiet !!!)

Saturday 22nd of December, my partner then and I decided to go to London Borough Markets. I said let’s take a train to London Bridge, we took the car and there will be somewhere close to park it. But then Amy (his daughter, just married) and Ben decided to come as well and they decided we would go up in a car to the O2 and then take the ‘tube’ to London Bridge.

They did not know that I couldn’t use an escalator, as in the tube and hopefully there would be lifts !

I managed to sort out the tube, it has disabled platforms so it was alright. We went to the tube at the O2 and used a lift to get down and it was really busy, after all, it was Christmas ! It was funny in a way Ben and Amy went first, then we followed me on to the tube, we were cramped right in. And it was even more funny, because I held the bar overhead (my left hand). But the noise and everybody was swaying from side to side and my right arm just kept flopping from side to side as well, it was hilarious.

As we approached London Bridge, the tube stopped and everybody got out and we went and got a lift to take us to the top floor. Then we crossed over the road to the Markets.

We looked around for a couple of hours, as I say, it was Christmas ! But everyone was nice and then we went back, via the tube.

Again, now I have done it once – I am alright with doing it again.

And now I can do the Train on my own !

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I spent a long time thinking about this……. Pre Stroke, I used to go up to London on the train and didn’t even think about it. I used to leave my car at the station and then when the train had stopped,  I used to get the underground……..

So, I pondered all week before.  I emailed to say that I wanted to go, it was at Church House, Dean Yard, Westminster in London.  Ok….. i could imagine getting to London but not on the tube yet !

On the Friday before,  I went down to Rochester Train Station.  I could only park for 3 hours, however, just around the corner was a Long Stay Car park. Which if you park in a disabled car park space and have you blue badge on display, so you can park there all day !!!

Then I went into the Station and they showed me the lift to the top floor and if I needed someone to help me on the train (and off in London) then I only had to shout. The only thing was the tube and basically it was a Taxi ride from Victoria Station.

I was really proud of myself in a way, I spent the whole day in London (via the Train Station and the Taxi) and ok, I was tired but I did it and as I say, once I have done it the first time, then its fine.

There were workshops :- iReadMore, which was a word reading app for patients with aphasia ( which i was one of them !) iTALKbetter, again an app to improve word finding. A sonic sleeve which gives auditory feedback on forward reaching movements such as reaching a cup of tea.

There were talks as well :- Stimulating Speech, Upper Limb Rehabalitation Project. It was really good and it made you think about the different effects that a Stroke can have.

I signed up to be a Volunteer for PLORAS. They do an MRI brain scan and a language assessment to predict language outcome and recovery.  So lets see…..

 

 

 

 

 

 

 

 

A new Splint…..!?

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It was time I had a new splint for my leg because it was getting worn and i thought that I needed to move on.

My physio was away so I went to Medway Hospital on my own and they decided that I definitely needed one and they sent of for one (of the shelf not a cast one). It was the next level which they thought would do it.  Unfortunately, this arrived.IMG_1728

They told me how to put it on, which I did and they suggested I wore it for an hour until it became the norm.

However, although it looked fine, i think i got a little way ahead of myself.  The right hand side of the splint rubbed on my leg, because the ankle is not entirely straight yet.

So, we went back and talked around the fact that it wasn’t quite right at the moment.

So they sent a way to get me a cast which I am now wearing, again it’s smaller than before but I will just have to carry on and work at it.

 

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