Do you answer research questionnaires?

[Annie-GBIA]

Has anyone here ever been involved in research or studies for brain injury?

If I see questionnaires I always fill them in - I figure they can only change things if they understand them.

What are your thoughts?

[cat3]

I was invited to take part in a Manchester university Glucose study about 6 months after a subarachnoid haemorrhage in 2012. I honestly can't remember the science behind it after all this time but I was collected in a taxi and taken to Salford Royal where I sat for three hours having glucose injections every 20 mins (being very sick as predicted) and then given a sandwich and driven home..

I was just so grateful for my care at Salford Royal and was more than happy to take part. And like you Annie, I always respond to questionnaires. We owe so much to medical research ! x

[Annie-GBIA in reply to cat3]

Wow that is really interesting!

That was certainly a hands-on participation!

Yes, we do we so much to medical and brain injury research. I have seen an explosion in brain injury research - especially over the last five years or so that is bringing real change for us.

It all really started with the interest in sports injuries and the links they made between dementia and other neurological diseases and brain injury.

I find it fascinating and if I can. want to be able to use my own experiences to help other people following behind us - hence always responding to questionnaires!

How are you doing in your recovery?

[philcollis]

NIHR have a section on patient and public involvement. You can register to participate in research by registering in the 'people in research' section. 'lived experience' is very much in demand by clinical researchers and healthcare professionals.

[Annie-GBIA in reply to philcollis]

Yes! Thank you! I signed up probably a couple of years back and am also in touch with the Brain-MIC.

Brain-MIC are running monthly drop-in sessions via zoom - anyone can ask to participate to learn more about current research buy contacting [e-mail]

You would just need to put in the header or mention wanting to register for the monthly drop-in sessions and Jackie will send the invite and zoom link for the next one to be held in March.

[Cornishboxer2]

It’s great to play a part in research surveys if it helps others. In the modern age of data collection and insurance claims etc I do worry though how secure our information is. I will probably follow up on the Brain- Mic project. Sounds interesting. I also keep noticing the similarities being expressed in some Long Covid neurological symptoms. It would be wonderful if out of this terrible pandemic some benefit in new research might be found for both Long Covid and Post concussion syndrome. ..

[Annie-GBIA in reply to Cornishboxer2]

It is usually Universities or the NHS or reliable organisations like Headway or the Brain Injury Alliance I see things from and they have very strict guidelines about how they can store and use data so I don't worry too much but certainly everyone needs to be aware of your point! A good one!

The next Brain-MIC drop-in is at 2pm on March 17th and is really interesting. I didn't know about the projects they mentioned last time so was eager to follow-up and get involved if I can. It helps me to feel like I am contributing something and to feel more productive! 🙂

I am with you on the Long-COVID and think huge resources are being pumped into research which, hopefully, will benefit us all.

I can remember last March and being so worried about the virus crossing the blood brain barrier and how this would impact those of us who already have a brain injury. I am terrified of taking any back-ward steps in my neurological recovery. I couldn't find any information at the time and strongly felt someone should have ensured we were put in the top priority group for isolation but nothing was ever done. There doesn't seem to be anyone who will make a statement about it or about how the vaccination might affect us.

I have already had a call from my doctor and there is a preservative in the vaccination I am allergic to - they said they will get back to me!

[Cornishboxer2 in reply to Annie-GBIA]

Thanks Annie if I can I will try and find out about the 17th March Brain-Mic. I agree with you on the prioritisation for the vaccine. It’s been very generalised and not finely nuanced at all. I’m certainly going for the vaccine but I’d hate it if it did cause any neurological setback. I’ve not seen anything to suggest they might mind you. I’ve been HIV positive since the 80s and we went through a lot back then with drug trials some of which I took part in. I feel lucky to be alive having lost so many friends then who had the early larger doses of the AZT drug and suffered horrendously. You can imagine I feel nervous but equally science has moved fast this time so I feel hopeful too. I’m still looking for a treatment for the vestibular migraines and nausea/sickness I suffer from but overall I could be a lot worse off. I hope you are managing ok during this strange time. It’s so good have this network to learn and share from other people’s experiences. Enjoy the sunshine today!

[Annie-GBIA in reply to Cornishboxer2]

Ah - we have grey skies and drizzle here on the Isle of Wight! Very mild though so all the windows are open!

I have a friend who is a physician in California - she worked entirely with HIV patients during the drugs trials and was also a huge part of the research as a biochemist.

The success of those trials and the lives saved remains a true legacy for medical research! I think anyone taking part in a drug trial is a hero and I know there can be a sense of having your back against the wall but it takes courage!

I hope you breeze the covid vaccine!

I have already registered to get the meeting link for the 17th March so might 'see' you there!

There are vestibular specialists who specialise in TBI patients. I know they provide treatment at Hobbs Rehabilitation in Winchester and Bristol but I don't know if they have centres where you live (I am guessing Cornwall). They might be able to put you in touch with or recommend someone near you.

Nothing much has really changed for me since the first lockdown last year. I keep myself isolated because I still don't really understand the 'outside world' and feel safer anyway keeping to myself.

The one place I always feel safe is in groups like this where I am understood and given leeway. I trust other people with a brain injury to be sincere with me - I am always worried if uninjured people are 'humouring' me!

[Cornishboxer2 in reply to Annie-GBIA]

Great to hear about your friend in California. Many are indebted to the work such specialists did and those who went before. I hope you are able to occupy yourself ok being inside so much. I think people react to it in different ways. I have always been a bit of an outdoors type and worked in gardening most of my life so just a little walk near home has been helpful. I have also been enjoying some interesting online Zoom discussions. It’s amazing what you can find and join in with! Great to connect with you and maybe see you in March online.

[Annie-GBIA in reply to Cornishboxer2]

I am always busy! I fill my time in Facebook support groups for brain injury - it is a place I feel safe and also have my fingers in a lot of other pies.

I am currently working on a huge project which will hopefully eventually turn into a kind of on-line clinic for people without medical support after a brain injury. The project is unique and the first time it has been trialled anywhere in the world. We are working with speech and language and occupational therapy students (they are supported by experts) to provide on-line assessments (still in the planning process) and help to people. In return the students get real experience of working with people with brain injury.

I am about to move house, hopefully next week, and that has been keeping me busy too.

I want to feel as though I have a purpose and am able to contribute. The only thing I have learned anything about over the last 20 years is brain injury - my social cup is pretty much completely empty on other subjects! 😁

I love gardening - my mum did too. She left me loads of plants which my daughter and son-in-law have been digging up and potting for me today ready to be moved. I feel as though if I left them behind I'd be leaving mum behind too.

I am really looking forward to creating raised beds in my new garden so they have longevity as I get older!

I have a lab too so always out walking her. I will be even closer to the beaches when I move - all doggie friendly so am really looking forward to that!

[Cornishboxer2 in reply to Annie-GBIA]

Sounds like you are busy! Its great to give something back too. Good luck with your exciting project. There is definitely a bit of a gap in nuanced care and it needs filling.

At the moment I'm considering doing some online training locally in journalism/publishing but am tentative as I'm not sure how much screen time i will cope with nor whether I'll be able to handle the techie stuff. I'm quite proud of myself for emailing the course organisers first explaining my symptoms though! They got back to me very positively so am hoping I will be successful getting a place. Will have to pace it and may not do all of it. Its only two weeks but intensive.

I'm lucky to have a stretch of beach nearish home but sadly no Labrador. I'd love one if it were practical.

[Pairofboots]

I worked in the NHS, and the NHS has I guess saved my life, so anytime that progresses knowledge and understanding, I feel is my duty.

I was recently rejected from a study, as they felt my physical health was too fragile (fragile, I've been called a lot of things in my time, but that was a first), and because of blood thinners, they wouldn't have been able safely excise a sample.

Although I said that because I was unsuitable that I didn't want the travel expenses (I would have preferred the promised cuppa), but they insisted.

I wouldn't get involved with any research purely for financial gain. It is important that the research has been approved, having gone through the ethics committee etc, but that said school projects are worth contributing to, just for the students experience.

I think that you have to be certain that you are prepared to donate your time, and follow the research rules.

I was asked to participate in a BI study in 2014, unfortunately I had moved home by a few hundred miles. I have tried to find out the outcome, but to date, I don't think it has been published.

[Annie-GBIA in reply to Pairofboots]

Wow! Thank you!

So interesting to read and really helpful too.

I agree with you that financial gain has nothing to do with why I would want to help. In fact, now that you mention it, I think it would detract from feeling like I was able to contribute.

I have put myself on some lists but never hear anything - I pick up more information from Twitter!

🙂

[Glenquoich]

I participated in a research study back in October which consisted of an interview for around an hour with a Psychology student, who was studying for her doctorate. It was about psychological therapies post brain injury.I hope whatever I said was helpful but the benefit I received from the experience was being able to tell a significant part of my story, which was very cathartic.

I'm definitely keen to get more involved in research, whether for an individuals benefit, an insurance company, organisation or the NHS.

I might be coming from a place of self interest but if there's any part of my condition or lived experience (no matter how small a part) can benefit others then it gives my own struggles some meaning.

I'd like to find out if there's somewhere I can donate my brain for research after I'm finished with using it.

[Annie-GBIA in reply to Glenquoich]

Wow! That sounds really interesting! I'd love a chance to do something like that! There is nothing like the lived experience and I am sure that you made a super contribution.

Have you seen this page - it gives you a chance to register with the NIHR - National Institute for Health Research. brainmic.nihr.ac.uk/patient...

Mmm! yes! I have considered the brain donation angle as well! I'd love to have one of those new 'all-seeing' scans done so that I could see it for myself too!

[RogerCMerriman]

Yes I even had a video chat one at the start of lockdown, lot depends on how awkward it is, but generally yes.

[Annie-GBIA in reply to RogerCMerriman]

It is good to hear that other people also want to help where they can Roger. How did you hear about the research you were involved in?

[RogerCMerriman in reply to Annie-GBIA]

Generally via social media.