‘I know I will have another stroke. It’s just when’ – Norfolk man on facing up to incurable brain disease
PUBLISHED: 16:40 03 September 2019 | UPDATED: 16:46 03 September 2019
Despite being diagnosed with an incurable brain condition that makes every moment precious, Glenn Bate is determined to help others struck down by the same condition.
After his legs stopped working and his vision went blurry on the way to work aged 59, Mr Bate, from Bressingham, near Diss, discovered not only that he had suffered a stroke but was also given the devastating news he had Cadasil, a form of vascular dementia that has no cure.
"Mentally you go to a very dark place," he recalls. "I didn't want to die but I didn't want to live either because I could not focus on what lay ahead. It was too awful to contemplate. You get yourself in such a low point, so can't see your life improving from that point. I was just numb really."
Mr Bate had always been fit and healthy but he knew something was terribly wrong after he underwent MRI and CT scans in hospital.
He said: "They said we think you've had a stroke but we don't understand the scan results so we are bringing a neurologist up from Addenbrooke's. By that point I had totally convinced myself that I had a brain tumour.
"He told he had condition called Cadasil and said 'I have to tell you straight away that there is no cure and there is no treatment'. By that time I had given myself weeks to live."
Four years on and despite his bleak diagnosis, Mr Bate, now 63, is determined to help others affected by the rare condition and get the most out of life while he can.
He said: "I'm a fighter, I've done a bit of boxing and martial arts but inside I was petrified, but I just wouldn't admit it to anyone. However I was determined to fight back so I started by walking the dog Milly even though 20 yards up the road was as far as I could do. I started doing more and more each day."
A passionate runner and Norwich City supporter he now regularly takes part in 5k and 10k races, has done the Three Peaks Challenge and is a Canaries Trust board member.
While his renewed lust for life has brought him and his wife Karen closer than ever, renewing their wedding vows on their 25th wedding anniversary.
He said: "You re-evaluate everything when you know your time together is going to be shorter than you'd hoped for. So it was really nice to celebrate with close friends and family."
Both he and Karen are participants a University of Cambridge study looking at people with small vessel disease. He is also a Cadasil Support UK trustee and gives talks to share his story.
He said: "I'm passionate about it. A lot of people coming into the charity are freshly diagnosed and they are in a pretty scary place. They need a lot of support and people to talk to. It was important for me to share my experiences."
Having suffered a second stroke two years ago, Mr Bate knows his own time is limited. "However you look at it the outlook isn't good," he said. "Things will get progressively worse. My cognitive function will deteriorate, strokes will take my functions and many people suffer increased migraines.
"But I have a story to tell and perhaps that is my purpose. Because it is a rare condition it is important we spread the word."
- Glenn is supporting the British Heart Foundation (BHF) in its mission to help beat heart and circulatory diseases. Visit bhf.org.uk to get involved
GLENN HELPS STUDY INTO FUTURE TREATMENT
Glenn is a participant in a University of Cambridge study looking at leaky blood vessels in the brains of people with small vessel disease, of which Cadasil is a hereditary form.
The project is led by Jessica Walsh, who is a BHF-funded PHD student, supervised by Professor Hugh Markus, regarded as the national expert on Cadasil.
She said: "I am interested in cerebral small vessel disease (SVD), which is a disease of the small blood vessels deep within the brain. SVD is responsible for 20pc of all strokes and is the leading cause of vascular dementia. There are currently very few treatments for SVD.
"We used brain imaging on 60 participants. 20 participants had sporadic SVD, which is the most common type, occurring in the elderly population due to risk factors such as high blood pressure.
"Analysis of the data is still ongoing, but preliminary results suggest that there is an increased leakiness of the blood vessels and an increase in inflammation in the brains of people with SVD. We have now moved to a drug trial that will be starting next week, where we are trying to 'switch off' the leakiness of these blood vessels with a drug, to see if this can reduce the disease progression. If this trial is successful then it could provide a new treatment for SVD."
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