Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Saturday, June 29, 2024

Share your experience of post-stroke fatigue to help others - UK

 Explain to them how useless your doctor is in treating post stroke fatigue, they've known about it for decades, yet have DONE NOTHING! Don't talk about your problems with fatigue, DEMAND TO KNOW WHO IS GOING TO SOLVE IT! NO EXCUSES!

The only way others can be helped by your testimony is if YOU  tell them they need to CURE FATIGUE! No excuses.

Share your experience of post-stroke fatigue to help others

Different Strokes is looking to recruit volunteers for taking part in research in partnership with the Universities of Birmingham and Cambridge.

We are interested in hearing from both stroke survivors and family members/carers of stroke survivors.

This would involve being filmed talking about your experiences of post-stroke fatigue.

COMbAT (COproduction and evaluation of a self-MAnagemenT intervention for post-stroke fatigue) is a self-management programme to help people cope with fatigue following a stroke. (Wrong goal, Survivors don't want to 'cope'! They want recovery. Why aren't you delivering that?)

It is being developed by experts led by the Universities of Birmingham and Cambridge. 

Share your experience of post-stroke fatigue to help others

People affected by stroke have told us that hearing other people’s experiences of fatigue is extremely helpful. Therefore, we want to include videos of people telling their fatigue stories in our self-management programme.

We are looking for volunteers to be filmed talking about their experience of post-stroke fatigue, how it affected their life, and tips/ tricks to manage fatigue. The videos or audio clips will be included in the fatigue self-management programme to help others affected by fatigue.

With your help, we want to empower stroke survivors to better manage their fatigue, enabling them to engage in activities that bring joy, value and meaning to their lives.

Who can take part?

  • Aged 18 years and over;
  • Live in the UK;
  • You feel tired all the time or get tired very quickly since your stroke;
  • OR you are a family member/ carer of someone who has post-stroke fatigue.

What would taking part involve?

There are different ways to be involved:

  • Film yourself on your phone or laptop answering questions;
  • The team can film you during an online meeting (such as Zoom);

There will be some opportunities to be filmed in person if you prefer.

You will receive a £25 voucher for your contribution

Next Steps

To express an interest please click on the button below to complete the online form.

Once you submit this you will be contacted directly by a member of the COMbAT Fatigue research team by the end of August 2024. 

The research has been funded by the National Institute for Health and Care Research (NIHR) and Stroke Association (Research ID: SA/NIHR 23\205012).

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