The Silent Sufferers: Concussion and its effect on family life

I recently tweeted saying that I would have a guest contributor on the blog as I have been talking about my ‘journey’ through concussion. I wanted to lift the lid on the other aspect that we harldy ever get to hear about; It’s effect on families and family life.

The below is an open and honest account from my wife – Libby – and her story through my concussion and how it affected us. You can follow Libby on Twitter at: https://twitter.com/littlered_libby

Thank you for agreeing to share the story. I know it hasn’t been an easy ride.

I hope you find her story of interest:

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I don’t normally do this kind of stuff so please bare with me while I try and explain my side of things.

As you all know Janne suffered a major concussion in March last year and it has had a major impact on his hockey career, but more importantly, on his personal life. The following is the impact the concussion, had on me his, girlfriend/wife of seven and half years.

I was watching the game when Janne got hurt. The hit that changed our lives didn’t seem that out of the ordinary for a hockey game. I didn’t really think too much beyond my normal “please get up, don’t be hurt.” However, I had no idea how badly injured he was and how drastically our lives would change as Janne got up and finished the game.

After the game, we were due to go to my uncle’s house in Ebbw Vale, Wales. I tried insisting on driving, but Janne being stubborn he was adamant to drive the distance. By this stage, he had mentioned that he didn’t feel quite right. It wasn’t until the next morning  that the symptoms became apparent. I was only slightly worried at first, as I’ve grown up around sportsmen (mainly rugby players whose mentality is similar to hockey players) my whole life, I’ve even had a couple of concussions myself.

As the morning went on, I realised it wasn’t like any other concussions I had experienced before. Janne’s eyes weren’t responding and it was like he was totally spaced, I had to talk very slow and simply for him to understand anything I asked. The uncle who we stayed at had just had a baby girl who to this date Janne will call Faith, despite it not being her name. Further to that, today he has to pause and place faces to my uncles’ names as he struggles to remember which is which.

He had no idea where he was or what he was doing but he refused to go to the hospital. I was panicked and scared. My whole family was gathered at Ebbw Vale for my cousins christening and the advice we kept getting was to take him to the hospital, which got Janne incredibly irate. This made me worry even more and we left the christening early to drive home. During the drive back Janne dosed in and out the whole time. When we eventually got home he kept asking me the same things over and over again. I found this very frustrating as Janne couldn’t remember anything from a few moments before and I could see how confused Janne was with my reactions. I wasn’t angry but having to repeat myself over and over made me have anxiety attacks.

Following from the injury and as the PCS  symptoms persisted, life got difficult at home. Janne was having trouble remembering anything that he was told or asked, which made me feel ignored, even though I kept telling myself it’s the concussion and I knew I had to be patient with him. However, I started to get increasingly worried as I started to notice Janne’s personality change. He wasn’t happy with the way he looked. He grew a beard and grew his hair, which was really out of character for him. He also said that he hated the person he saw in the mirror every morning.

When I offered to help him and speak to him, Janne refused it. He was constantly going through mood swings, which would make him happy at one minute and completely reduced to tears the next. His moods would be anything and everything between those two extremes. I was afraid to speak to my husband, because I wasn’t sure if what I said was going to be greeted with smiles or with shouting.

Janne put himself into a shell and started to shut down. He found solace in blogging. At one stage I felt I found out more what he was going through by reading his blog, than from his own mouth. Janne said that he didn’t want to worry me or his family over nothing and that is why he was turning to the blog and to social media to air his feelings. However, it made things worse as he wouldn’t  talk to me or the rest of his family about the issues. Janne’s parents and my parents were just as much in the dark about his state as I was.

Janne always had a sparkle in his eye, which showed his love and affection as well as his cheeky 5-yearold boyish side. With the concussion and as the symptoms worsened, the sparkle was gone. I was afraid that I was losing my husband and I started to feel unwanted and lonely. It wasn’t till after he recovered that Janne admitted that he felt like he had shut down emotionally.

I don’t want to sound needy, but at times I got so lonely and upset I would cry myself to sleep and Janne wouldn’t even notice, I didn’t tell him as I was scared that he would snap at me or worse leave me. His moods were getting worse. One time when we were in town, Janne was visibly suffering. He was pale, he was sweating and his eyes had, what can be called the 1,000 yard stare. I asked him if he was OK and if he needed to go home, but my suggestion and concern for his wellbeing was met with anger and shouting.

Sometimes I would try and force him to pay attention to me by jumping on his lap and kissing him with all my passion I felt inside for him, but the reaction back was on the verge of repulsion, which was so hurtful that after awhile I couldn’t cope with what felt like rejection, so I stopped trying.

As things moved on and Janne seemed to distance himself more from me and the outside world, I became worried. While he was still going to training, which in hindsight I should’ve stopped him from doing, Janne wasn’t really interested in engaging in social situations. We started to argue more as Janne’s moods changed. I insisted that he was keeping things from me, while he didn’t see it the same way and kept saying he wanted to protect me and not burden me with all his issues.

As months went by, Janne was starting to feel better. He was still suffering from constant headaches, mood swings, light sensitivity and he was constantly frustrated as he was not as fit as he wanted and kept blaming people (me, doctors etc.) for holding him back. In fact every time we went to see the doctors for a control visit and when the answer was “It is going to take a lot of time” Janne would get really angry and depressed about it. I think deep down, where he kept saying he felt lost, he longed for normality again.

Our relationship also suffered. Yes we loved each other, but we were on autopilot mode. We would go through the motions but not really spend any quality time with each other. Janne kept saying he felt so lethargic and that he felt like he had lost himself.

I tried my best to support him the whole time, but I felt like I had no one to talk to about it. It almost felt like the concussion was stigma as others kept saying Janne looks fine, if maybe a bit depressed. I was too proud to admit to other people I was struggling with it as well. I just kept plodding along and kept telling myself things will get better and that the sparkle in his eyes I had fallen in love with would come back.

It has been a gruelling year marred with ups and downs. We have had to face up to the problems that the concussion caused on the long term. It wasn’t just a knock that would’ve healed in a couple of weeks time, it took good 6-8 months for us to really get our lives back. During the time of the concussion and PCS we were drifting apart and we have had to work hard on our relationship to make sure that we are fine. We almost lost each other, but we have come out a lot stronger from it, so in a way it has had a positive impact on life, but it is something that I would never want to go through again.

However, every time Janne steps onto the ice, I’m scared that he will be seriously injured again and that we would have to endure the hell again. I was scared after his car accident that the concussion he suffered would set him back, but at least we both have learned valuable lessons from the last experience to better manage it. Where it doesn’t seem as bad as the last one, I still have this constant worry over it.

I hope this helps people to realise that concussions and PCS have a major impact not just on the person but everyone around them. It’s hard to cope with all the changes, but as long as you deal with them and don’t ignore the “illness” you can get through it.

Helmets, they protect your head, but what of the brain?

This post has also been published by Pucks Across The Pond in my diary: http://pucksatp.hockeytutorial.com/2012/helmets-protect-head-brain/

 

As I’ve been out with another concussion (non-hockey related), I’ve thought about the so called concussion epidemic that has plagued the NHL and the sport of hockey for a long while now. I’ve started to think that despite the equipment us hockey players wear on the ice, there is very little there that would actually protect a players’ brain from a concussion.

Where the helmet has been designed to protect the head from potential injury if hit by another player, stick, puck, board or the ice itself, there is (at least in my opinion) very little in the way that a helmet would actually protect  a player from concussion.

I’m not a doctor, but my understanding of concussion is that the fluid that surrounds the brain is unable to protect the brain from severe impacts or forces associated with rapid acceleration/deceleration where the head would jolt violently causing the fluid not being able to protect the brain from these motions.

Helmet shells are commonly made from vinyl nitrale which do form a strong and durable shell to protect the head from impacts. The sole purpose of the shell is to disperse the energy of a point of impact, similar to a car in an accident where the body of the car has been designed to absorb the forces of impact in an accident to protect a passenger. The insides of the helmet are either made of the same material (the white stuff that majority of the pros wear) or polypropylene foam, which is supposed to absorb forces of impact to reduce the chance of a concussion.

A quick history lesson before we move on. As far as hockey goes, helmets are a relatively new piece of equipment. It was only in 1979 the NHL made helmets mandatory. Though at the time of making helmets mandatory 70% of NHL players were already wearing them. Sure helmets had been around before then, but it was the first time that players were required to wear a helmet full time. I had to do a Google search for hockey helmets to find that George Owen of the Boston Bruins was the first player to wear a helmet in 1928-29 season.

It wasn’t until the death of Bill Masterton in 1968 that the discussion of helmets became prominent and lot of the stigmas about wearing helmets started to dispel. A similar stigma now surrounds the use of visors. Majority of players do wear a visor, but there is still a debate ongoing whether the use of visors should be made mandatory to avoid career threatening eye injuries.

As for helmets and concussions, there has only been one company (Cascade Hockey) that has made concussion protection its USP. With it’s M11 helmet Cascade tried to create a helmet that would significantly reduce the risk of concussion. The M11 was designed to significantly reduce the forces from high speed linear impacts which Cascade determined caused most of the concussions in hockey. Additionally Cascade developed a system to adjust the setting of the back of the helmet to give it a more customised fit feel  and ensure tight, but comfortable fit. A lot of the times when watching hockey you see the helmet move on the players’ head from hits on the boards or player getting up after a hit and re-adjusting the helmet, which means that the helmet is does not sit right and therefore is not providing adequate protection.

Going back to the fitting and adjusting feature, I’ve not seen a similar system on any other helmet. The Reebok 8K helmet, however had something similar to it, with its FitLite technology. This has obviously evolved in the 11K helmet. Though I don’t want to take a snipe at the technology or design, Sidney Crosby the face of Reebok was out for 10 months with a concussion and is now sidelined again with a neck injury and concussion. People can make their own judgements of that.

I think aside from Cascade, only one other manufacturer has made a play on the reducing the risk of concussion and that is Bauer, with its RE-AKT helmet. The helmet has been specifically designed to manage rotational impacts, as is the M11 from Cascade. The collateral from Bauer says that the helmet helps to protect the brain from excessive intra-cranial movement due to the helmet’s liner, which Bauer has named VERTEX FOAM. I have asked Bauer how the helmet actually protects from concussion or how the liner in the helmet reduces the risk of concussion, but I have not received an answer yet.

But the real interesting thing is, at least in Europe, whenever you buy a helmet you’ll have a CE safety certificate on it to say that the helmet has passed required tests, but might not protect you from serious injury. As far as I’m concerned there simply isn’t, or hasn’t been enough done by manufacturers to address the concussion problem, but then again, how do you stop the brain moving around inside your skull? How do you stop a violent jolt of the neck/head from causing concussion?

When the issue of head shots raised its ugly head in the NHL, there was a lot of discussion among GMs on how you can take it out of the game and as a result a new rule was introduced (Rule 48). The NHL also set up a task force to better manage concussions and players who suffer a suspected concussion, hence the quiet room players are lead to mid game if there is a suspect concussion. If the NHL set up a task force to look into the issue and how to better manage the issue, why wasn’t helmet safety and safety features a part of this discussion?

To me it only seems obvious as one of the things that always crops up in concussion and hockey conversations is that “the players are bigger and faster and the padding has gotten better and bigger so players feel more protected”. Yes true. I do feel safer and protected when it comes to shoulder pads, shorts, elbow pads etc, but looking at the helmets over the last few years, I feel that the development has not been as rapid as with other pieces of equipment hockey players wear.

The other issue that comes with helmets is that the common advice is that a helmet should be replaced after heavy impact to the shell as it might lose its protective features. Again the Cascade M11 helmet is the only helmet that I know of that can sustain more than one impact.

Which leads us to the issue of price. Where the pros will have access to free equipment in most instances, guys who have to pay for their own kit might not be able to afford the top of the range helmet that provides the safety features that have been promoted by Reebok, Cascade and Bauer with their top of the range helmets.

A quick look on Hockey Monkey shows that CCM’s V10 helmet is the cheapest top of the range helmet around and retails at sub $100 at Hockey Monkey. I use the V10 helmet and since my last on ice concussion, I’ve been looking at the helmet and thinking how on earth does this protect my brain from concussions. Sure it protects my head/skull from impact from puck, stick, boards etc, but there is very little in the helmet to re-assure me that this will also protect my brain from concussion.

Also let’s not forget that Marc Savard wore the CCM V10 helmet when Matt Cooke deliberately hit him in the head in 2010. In fact, the V10 helmet has changed very little since then.

I haven’t been able to find the prices for Bauer’s RE-AKT helmet, but the M11 retails at $129.99 (reg: $159.99), the RBK 11k at $169.99 (reg: $179.99), The Easton E700 at $149.99 (reg: 179.99) or the Easton S19 Pro stock helmet which regular retail price tops the $200 mark. Please note that those are the prices as per Hockey Monkey and can vary from retailer to retailer.

Then there is of course the mirror test. I remember that the V10 helmet especially at the time of its launch was promoting itself with the tag line of “Guaranteed to pass any mirror test”. The mirror test should not be the first thing on your mind when buying a helmet. The fit and protection should be the top priority when choosing a helmet. You only get one head and unfortunately the brain is a delicate thing that can’t take too many beatings or injuries.

But like I said in my interview with Aaron Murphy, the contact and physicality of hockey is something that draws people to the sport and was a reason why I started to follow it in the first place. If you take the hitting out, we are left with something that resembles the All-Star game and no-one in their right mind would want to watch that type of hockey for 82 games (plus play-offs) a year. I guess concussions are something that you can never fully take out from a contact sport, but you can always make sure that players are protected to the highest standards and that there are medical checks to ensure that players with concussions are given the best possible treatment.

What I would like to see is equipment manufacturers include some of their ‘concussion prevention technologies’ into all their helmets. Remember all it takes is a funny fall in a game of shinny to cause a concussion. It’s not just professional, semi-pro or amateur players who are at risk from concussions, it is hockey players from all levels.

Think of it this way and using my car analogy from earlier. A car that does not meet the safety regulations in collision and impact testing by EURONCAP is not allowed on the road. As your brain is a passenger in your head, wouldn’t you want it protected to the highest standard when you play any contact sport?

Concussion: Six Months On

As this blog has documented in detail my struggles with concussion, I thought it would be a good idea to give you an update on what the after effects have been. You tend to read a lot about the symptoms of concussions, but once a player/person has gotten over the symptoms it is presumed that you carry on as normal.

 

Please do bear in mind that concussions vary from individual to individual and what I have experienced might not be applicable to some.

 

It has now been over six months since the concussion and I am symptom free from the actual concussion, but there have been several things that have not been the same. If you hear people who have suffered from concussions say that they have good and bad days, it is true. I have days when I feel normal and days when I still have to lock myself in a dark room due to intense migraine like headaches that have become more frequent since the concussion. When the headaches come they are pretty bad. It feels like someone is yanking at the inside of my eyeballs and I literally cannot move my head or I feel nauseous. There isn’t a set thing that I’ve noticed what would set it off, but sometimes it can be certain smells or even things like flashing lights.

 

The flashing lights is another thing that I can’t deal with. If I’m in a nightclub (rarely) I can’t be in for a long time as the lights they have really get to me and make me feel dizzy and that’s before I would’ve drank anything. The worse are strobe lights, if there is a strobe light that’s going off, I feel like I’m going to be sick. Other lights, what you normally see in clubs or at parties, give me a headache and ultimately ruin my night. Then again, I wasn’t that big on the club scene anyways so I’m perfectly happy to sit down at a bar or a pub.

 

The strobe light issue doesn’t have to be in clubs or on nights out. It’s also in films or TV when there are flashing lights or scenes that flash back and forth. Like in the movie Black Swan, the night club scene really made me turn away. Also I have trouble watching shows like the X-Factor (apart from the terrible singing and the mundane judges) due to the light show/screens they use.

 

The third biggest thing that I have noticed are short term memory problems. I still have a trouble remembering things that I have done or what I’ve been asked to do. A good example of this is from a few weeks ago when I left training and I could not remember where I had parked my car. I was wandering around the parking garage with a couple of teammates not being able to remember what level I had parked my car or where on the level I had parked it.

 

Then there is head banging or sudden jolts of the head i.e. if I sneeze. The head banging to music has stopped as I can visibly feel my brain move around in my head and it is an uncomfortable feeling. Similarly if I have a cold/flu and I sneeze and my head jerks because of it, it feels doubly bad.

 

So despite being over the main issues of the concussions it has had a profound effect on my life and the things that I do. Most of the time I don’t think about the concussion, but I still get reminders that I have suffered a blow that has altered things. Despite this, I still love to play and I am thankful that I am able to carry on playing, but most of all, I’m grateful that I can lead a normal life most of the time.

Off season lessons

This off season/pre season has been different from others that I’ve had, for many reasons. I don’t think that ever during my career my body (and mind) were so beat from the season. The mind pretty much due to the concussion rather than the mental strain from the season.

 

So for the first time in my life I was faced with a wholly new challenge. My hip was in a pretty bad shape, my head was a total mess and I was tired. Pretty much from finishing the last game of the season I knew that the summer was going to be far from easy, but then again, hockey doesn’t really give you a long summer holiday.

 

I think I gave myself about a week off from the ice and then started to hit the gym. While it probably wasn’t the smartest thing to do with the ongoing concussion symptoms, I needed to do something. Running made my head feel worse and the doctors said that I was OK to do light weights and go easy. Too bad I have a different idea of going easy to the doctors.

 

So I was able to train really hard through April and I thought that I had overcome the concussion issues. My body started to feel better and I felt stronger physically, but I was still hitting a wall. I was helping out at one of my wife’s trainings on the ice and I was doing a regular skating drill we did throughout the season. I was probably going at about 60% and I just literally didn’t know what the hell was going on. I went pale, blacked out and almost passed out. From skating at about 60%.

 

This then lead to heated debates and arguments about what I should and shouldn’t be doing and being a bone head I told everyone to STFU and let me decide what’s best for me. As a compromise I agreed to take a week out of training to give myself some extra time to re-coup.

 

If you follow me on twitter, or are unlucky to have me as a friend on Facebook, you know what happened to me on my first run after I resumed training. I was about 800meters from the office and I was doing a visualisation and mental exercises while running. I was so focussed that I didn’t see a pothole and I ran into it and twisted my ankle…. BAD! Where the ankle hurt for a few days, I was back at the gym lifting weights and on the bike 3 days after I hurt it. My thinking being, if I focus on exercises where there’s no risk of the ankle buckling or giving way, I’ll be OK.

 

The other issue I dealt with was the hip, which I mentioned at the start. As soon as the season had finished I entered into a rigorous physio therapy programme with Matthew Radcliffe, who is a the head physio for Southampton FC. Matt did a great job with me and seriously put me through the paces. I don’t think that I’ve ever worked so hard at physio, which I enjoyed as it was actually doing functional stuff that I knew would help and it kept me interested as I felt like I was actually having a workout.

 

The physio for the hip has worked as the times I’ve been on the ice, I’ve been skating pain free, which has shown me how much fun it can be. I was officially discharged from the hip physio and where I’m happy to know that I’ve been discharged and fit, I still have to do continuous exercises to ensure that the hip doesn’t flare up, that combined with a new pre-activation session.

 

Additionally, I’ve also been discharged from the ankle physio, which effectively brings to an end a regime of physio therapy that started in April. I think this summer I’ve been in physio for a longer period of time than ever before.

 

On the other hand though, my gym workouts have gone so well that I am actually feeling really good about the shape I am in and it is a definite step up compared to where I was starting from at the start of last season. Maybe more importantly the off season training has taught me more about mental toughness and discipline than anything else. I feel like the work I’ve put in, both in training and in physiotherapy has made me a stronger person and helped me to examine the game from a entirely new point of view. Despite the off ice training being hard and difficult at times, I have actually had fun doing it and I’m actually smiling at the gym, the same can be said of the times that I have been on the ice. Hockey is definitely fun again, which is something that I’ve missed among all the injuries I suffered with.

 

As for last season, well it is just that, it’s last season. I will take lessons from it, but for now my eyes are fixed on the 2011-2012 campaign. I think the most important lessons I have learnt this off season are those of patience, hard(er) work and trying out new things. I feel that I’m mentally stronger and I feel that I’ll be able to have fun instead of whitekncuckle the stick. There’s 6 days till we take to the ice as a team again, so I’ll be looking forward to seeing some of the guys I’ve not seen over the summer.

 

I can’t come up with a better ending to this than what a Finnish hockey journalist Jari Mesikammen (aka Karhuherra on twitter) said in his recent column: Forget about summer, drop the puck already!

Baby Steps

Today has been good. I was in a pretty bad place last night and my mood was up and down like a yo yo. If I didn’t know any better I’d say I was going through midlife crisis or menopause or something. The biggest improvement has been in my coordination. I don’t feel as big of a bumbling fool as I did yesterday.

I’m getting my appetite back as well which is pretty good. I’m still suffering from a headache and i’ve got a constant ringing in my ears, kinda like having been in a concert or nightclub and you’ve spent the night right under the speakers. Which reminds me.. loud voices and sounds are not good either. Sort of sucks, because music I like is loud. I had a little walk around the block. I started to feel a bit dozy afterwards and my eyes had trouble re-focussing when I checked the crossing.

The biggest problem I still have is with my short term memory. It’s getting better, but I find I’m asking the same things or remember I have to do things that I’ve already done. That and I’m still sleeping a lot and still getting easily irate.

I guess this is the ‘dangerous’ phase in recovery as I’m feeling better, I’m getting the itch to get back on the ice and I’ve partially forgotten my own frailty. But I’ll carry on taking baby steps to make sure that I’ll be able to get on top of this quickly.

As ever, I remain appreciative and humbled by the messages of support I’ve received.