Following the sad death of former Boro coach and Scotland legend Gordon McQueen I thought it would be useful to reflect on the work of Dr Judith Gates and her campaign about the dangers of dementia from football. Dr. Gates is wife of former Boro centre back Bill Gates as well as being an academic and co-founder of the charity Head For Change. Originally published in last season's final issue of Fly Me To The Moon fanzine I interviewed Dr. Gates at an MFC Foundation event focusing on dementia and their award winning initiative of working in care homes with football memory boxes to unlock memories of those being cared for. Dr Gates talks about her husband's dementia and how Head For Change is seeking to inform and work to tackle dementia from football.
Q: It tells a tale that Bill Gates Testimonial and final game, Boro v Leeds, was actually before his 30th birthday. He was very young to retire.
JG: He was very young to retire and the reason he retired at that time was that he was suffering from dreadful migraines and the club doctor at that time, Dr Neil Phillips (also England World Cup doctor), Bill talked to him about the migraines and Neil said, goes with the territory, it is one of the things that you just get from playing football. But the migraines were actually so debilitating that Bill made the decision to retire just as the Boro were going into the First Division (top flight). So it is actually indicative of how problematic they were. And what he actually said for the next 20/30 years is I have headed so many footballs one day I will get dementia, if I do, make sure I am well looked after, continue living your life and so on. But he almost predicted it because he was looking at the generation that had gone ahead of him and seeing the neuro-degenerative diseases that were within that generation. But he stepped out before he went into the First Division because of the level of the head aches that he was getting.
Q: Going back through time the life expectancy for people, including footballers was not as long as now, so I was surprised to hear you say about Bill's prediction, even in the 1970s.
JG: What we are finding from Head For Change, the charity I co-founded, really at Bill's request, is that the players that are being affected by this are affected at an earlier age than the normal dementia from old age. So, I don't think it is just that they are living longer I think that we have greater clarity about it and are recognising it. But for example many are having memory problems in their 50s. In the rugby world they are having early onset dementia in their 40s from the blows they have had as they are in the NFL world.
Q: I think many of us will know footballers and even local ex footballers that have been affected by dementia relatively early in life.
JG: Absolutely. I run a group for family members of players that are suffering, we call it Extra Time To Talk and we meet every couple of weeks. And what we are finding and I can give scientific data for a lot of things but not for this, what appears to be happening is that it is a more brutal form of the disease. So, I want to get over the concept that it is not like, I can't remember where I left my car keys, what day is it? You know all of those kind of things. I'm working with families where the men are head butting the walls, where the men are beating their own heads. Where the women are having to have a safe place in the house because the men are hitting their wives when they have previously been gentle.
Q: Becoming very aggressive?
JG: Becoming very aggressive, becoming very tormented. I am working with a family where just a couple of weeks ago she had to have her husband admitted to a psych ward because he was threatening to kill the family. Where he kicked her in the way in which he used to kick a football. Where he broke through the child locks on the doors and tried to run away. And I want the message to go out that this is not a gentle losing your memory, this is a brutal disease, NFL players have shown they often have suicidal ideation. Bill went through a phase where he said to me, “get me a gun, I have to kill myself and don't know what is happening in my head... give me tablets.” I had to hide every tablet in the house.
So, what I want the young players to know is they are vulnerable because this is continuing. The impact of the balls of today, given the velocity and the same weight, is as great if not greater than in the 60s and 70s. So they are in as much danger and it is not a gentle disease it is a tough disease and when it can be preventable it is an absolute tragedy.
Q: My dad is in a care home and has Alzheimer’s but thankfully has become more mellow, not any of those aggressive and violent tendencies you describe.
JG: Bill has what they call Flat Effect. He is virtually emotionless and he doesn't speak and he is more mellow. We have been through obsessive walking where he walked 10 miles a day, where we had to walk with him because he couldn't find his way home. So it was my son Nick and myself and we had to actually had to hire somebody to walk with him. He ended up in hospital dehydrated because we couldn't get enough water in to him. My son described it as his dad's lonely walk to nowhere. We walked by his side and our heart breaks. But he was obsessed with it and as soon as he got back home from one walk, we would say drink some water Bill and he would say are you coming for a walk and he would have to go and walk again.
So, you have obsessive behaviour, violent behaviour, tormented behaviours, suicidal behaviours and this should be prevented.
Q: We have seen some realisation and some actions by the FA following a lot of lobbying from yourself and Hayley McQueen for instance.
JG: Yes, who I am working with of course. We were fortunate with Head for Change that we were able to make donations to three families just recently and Gordon McQueen's family was one of them and Hayley and her mum Yvonne have been very appreciative. And we did that for residential care because there is no funding for residential care from the sporting governing bodies, not the PFA union, not the PFA charity, now the Players Foundation, currently not the sporting governing bodies and families are terrified of the cost of residential care.
Q: What would you wish for going forward?
JG: What would I wish for? Gosh. Well, there are quite a few things I would wish for but I would think would be an overarching need is actually on our leaflet. First of all knowledge and then ownership by the players of the necessity to protect their brain.
So what I would ideally like would be a national campaign in the same way as we have for example with symptomatic concussions; If in doubt sit them out. A national campaign that said something like, Head Impacts Harm Your Brain and I would like that in every changing room and in every school gym. Professor Willie Stewart has said they should be on every football. Which is another way of looking at it.
But I would like that level of awareness raising to go on across the country so that actually players thought to themselves, I need to look after my brain, I am not going to do anything unnecessary. Now, I think if that happened and if we reduced heading in training, because we know that head impacts are dangerous but we don't know how many is safe. (It is a bit like does one cigarette give you cancer or is it 30 a day?) then we are on the right path.
We need more research. I would like research for diagnosis during life because we work with 65 ex players who have all been through the experience of being professional footballers and now to be honest are scared to death because the tau protein that spreads in the brain is like poison ivory over 20 years and they are saying, have I got this? I have forgotten my phone number, when did I do this? what did I do there? So, I think we need research on being able to diagnose during life and treatment during life because currently there is no treatment.
It is a bit like a Christmas wish list except it is all scientifically based the things that I am requesting and I just want to live long enough to see some of them come to fruition.
Q: What are bodies like the PFA doing to help?
JG: The PFA has set up a dementia unit but in actual fact what families are getting now from the PFA union and charity is less than they were getting when Graham Taylor was in the position as Chief Exec Officer. I know that the PFA Union has gone public and said that they are looking to the sporting governing bodies like the Premier League to set up a fund for players and families but currently the PFA charity has closed the door to donations. They offer support to families to access adult social care. So, effectively they send them back to the government and say means tested and back you go to the government and coroners have said, this is an industrial disease. So, tough one.
Q: So, I guess education and awareness is the start and reducing heading in schools and for young kids etc?
JG: Well, we are doing two things. One thing we are doing is partnering a charity called Coaches Across Continents and we are currently working with EFL clubs. We work with over 40. Some in groups and some face to face. We find that only 4% of the sports scientists know about chronic traumatic encephalopathy (CTE – caused by repetitive head trauma) which is frightening. But we also have set up zoom calls for youth, the parents of youth players. So once a month they can come on to our zoom calls and find out how they protect their kids and so on. And very much what we are saying with Head for Change is we don't want to be a group that says somebody else should make this right. We want to be a group that is evidence based, looks at the scientific data but then tries to put in place things that are part of the solution. Hence our education of players, hence our education of families, hence our financial support of families and so on.
Q: It tells a tale that Bill Gates Testimonial and final game, Boro v Leeds, was actually before his 30th birthday. He was very young to retire.
JG: He was very young to retire and the reason he retired at that time was that he was suffering from dreadful migraines and the club doctor at that time, Dr Neil Phillips (also England World Cup doctor), Bill talked to him about the migraines and Neil said, goes with the territory, it is one of the things that you just get from playing football. But the migraines were actually so debilitating that Bill made the decision to retire just as the Boro were going into the First Division (top flight). So it is actually indicative of how problematic they were. And what he actually said for the next 20/30 years is I have headed so many footballs one day I will get dementia, if I do, make sure I am well looked after, continue living your life and so on. But he almost predicted it because he was looking at the generation that had gone ahead of him and seeing the neuro-degenerative diseases that were within that generation. But he stepped out before he went into the First Division because of the level of the head aches that he was getting.
Q: Going back through time the life expectancy for people, including footballers was not as long as now, so I was surprised to hear you say about Bill's prediction, even in the 1970s.
JG: What we are finding from Head For Change, the charity I co-founded, really at Bill's request, is that the players that are being affected by this are affected at an earlier age than the normal dementia from old age. So, I don't think it is just that they are living longer I think that we have greater clarity about it and are recognising it. But for example many are having memory problems in their 50s. In the rugby world they are having early onset dementia in their 40s from the blows they have had as they are in the NFL world.
Q: I think many of us will know footballers and even local ex footballers that have been affected by dementia relatively early in life.
JG: Absolutely. I run a group for family members of players that are suffering, we call it Extra Time To Talk and we meet every couple of weeks. And what we are finding and I can give scientific data for a lot of things but not for this, what appears to be happening is that it is a more brutal form of the disease. So, I want to get over the concept that it is not like, I can't remember where I left my car keys, what day is it? You know all of those kind of things. I'm working with families where the men are head butting the walls, where the men are beating their own heads. Where the women are having to have a safe place in the house because the men are hitting their wives when they have previously been gentle.
Q: Becoming very aggressive?
JG: Becoming very aggressive, becoming very tormented. I am working with a family where just a couple of weeks ago she had to have her husband admitted to a psych ward because he was threatening to kill the family. Where he kicked her in the way in which he used to kick a football. Where he broke through the child locks on the doors and tried to run away. And I want the message to go out that this is not a gentle losing your memory, this is a brutal disease, NFL players have shown they often have suicidal ideation. Bill went through a phase where he said to me, “get me a gun, I have to kill myself and don't know what is happening in my head... give me tablets.” I had to hide every tablet in the house.
So, what I want the young players to know is they are vulnerable because this is continuing. The impact of the balls of today, given the velocity and the same weight, is as great if not greater than in the 60s and 70s. So they are in as much danger and it is not a gentle disease it is a tough disease and when it can be preventable it is an absolute tragedy.
Q: My dad is in a care home and has Alzheimer’s but thankfully has become more mellow, not any of those aggressive and violent tendencies you describe.
JG: Bill has what they call Flat Effect. He is virtually emotionless and he doesn't speak and he is more mellow. We have been through obsessive walking where he walked 10 miles a day, where we had to walk with him because he couldn't find his way home. So it was my son Nick and myself and we had to actually had to hire somebody to walk with him. He ended up in hospital dehydrated because we couldn't get enough water in to him. My son described it as his dad's lonely walk to nowhere. We walked by his side and our heart breaks. But he was obsessed with it and as soon as he got back home from one walk, we would say drink some water Bill and he would say are you coming for a walk and he would have to go and walk again.
So, you have obsessive behaviour, violent behaviour, tormented behaviours, suicidal behaviours and this should be prevented.
Q: We have seen some realisation and some actions by the FA following a lot of lobbying from yourself and Hayley McQueen for instance.
JG: Yes, who I am working with of course. We were fortunate with Head for Change that we were able to make donations to three families just recently and Gordon McQueen's family was one of them and Hayley and her mum Yvonne have been very appreciative. And we did that for residential care because there is no funding for residential care from the sporting governing bodies, not the PFA union, not the PFA charity, now the Players Foundation, currently not the sporting governing bodies and families are terrified of the cost of residential care.
Q: What would you wish for going forward?
JG: What would I wish for? Gosh. Well, there are quite a few things I would wish for but I would think would be an overarching need is actually on our leaflet. First of all knowledge and then ownership by the players of the necessity to protect their brain.
So what I would ideally like would be a national campaign in the same way as we have for example with symptomatic concussions; If in doubt sit them out. A national campaign that said something like, Head Impacts Harm Your Brain and I would like that in every changing room and in every school gym. Professor Willie Stewart has said they should be on every football. Which is another way of looking at it.
But I would like that level of awareness raising to go on across the country so that actually players thought to themselves, I need to look after my brain, I am not going to do anything unnecessary. Now, I think if that happened and if we reduced heading in training, because we know that head impacts are dangerous but we don't know how many is safe. (It is a bit like does one cigarette give you cancer or is it 30 a day?) then we are on the right path.
We need more research. I would like research for diagnosis during life because we work with 65 ex players who have all been through the experience of being professional footballers and now to be honest are scared to death because the tau protein that spreads in the brain is like poison ivory over 20 years and they are saying, have I got this? I have forgotten my phone number, when did I do this? what did I do there? So, I think we need research on being able to diagnose during life and treatment during life because currently there is no treatment.
It is a bit like a Christmas wish list except it is all scientifically based the things that I am requesting and I just want to live long enough to see some of them come to fruition.
Q: What are bodies like the PFA doing to help?
JG: The PFA has set up a dementia unit but in actual fact what families are getting now from the PFA union and charity is less than they were getting when Graham Taylor was in the position as Chief Exec Officer. I know that the PFA Union has gone public and said that they are looking to the sporting governing bodies like the Premier League to set up a fund for players and families but currently the PFA charity has closed the door to donations. They offer support to families to access adult social care. So, effectively they send them back to the government and say means tested and back you go to the government and coroners have said, this is an industrial disease. So, tough one.
Q: So, I guess education and awareness is the start and reducing heading in schools and for young kids etc?
JG: Well, we are doing two things. One thing we are doing is partnering a charity called Coaches Across Continents and we are currently working with EFL clubs. We work with over 40. Some in groups and some face to face. We find that only 4% of the sports scientists know about chronic traumatic encephalopathy (CTE – caused by repetitive head trauma) which is frightening. But we also have set up zoom calls for youth, the parents of youth players. So once a month they can come on to our zoom calls and find out how they protect their kids and so on. And very much what we are saying with Head for Change is we don't want to be a group that says somebody else should make this right. We want to be a group that is evidence based, looks at the scientific data but then tries to put in place things that are part of the solution. Hence our education of players, hence our education of families, hence our financial support of families and so on.