In my first hockey game as a senior in high school I received two major concussions in the span of approximately 30 minutes. I had major cognitive problems initially. (I couldn’t read or write, speech was difficult for the first few days and a lot more.) It took me a good 12 months to feel right again. I’ve subsequently recovered, and am fully back to where I was before the accident. Although that was many years ago, concussion recovery is something I feel passionate about having lived through it. I really believe it’s not something a doctor or anyone else can fully understand and help with unless they’ve lived through it. I’ve got a number of tricks and strategies for better more fulfilling recovery and I’d be happy to share all of them. None of these are medical in nature. They’re psychological. For example, I recommend buying a Nintendo DS and one of the brain training games. Play it every day. What’s nice about those games is that they track your progress every day. You will be able to literally observe yourself getting better.

I’m not here to offer medical treatments, nor do I want money or anything else for advice or answering questions. I’m someone who lived through a horrible experience with concussion and I’d like to give back. Through my recovery I think the person who most helped me was Pat LaFontiane, the New York Rangers forward who eventually had to retire due to concussions. We spoke on the phone approximately once a week and his messages of hope and recovery were instrumental in helping me get back to normal. I’d like to do the same in this forum.

Hi Sackler99,

I'd love to learn more about your tricks and strategies for recovery. Did you have other symptoms besides cognitive loss?

I definitely agree that doctors are of little help if they haven't gone through it themselves. I was told by one neurologist that my tingling, numbness, and headaches were likely psychosomatic. He later acknowledged it is likely PCS. It makes recovery even more difficult when you can't find anyone who really understands.

I'm very encouraged to hear that you had a full recovery after about a year. I'm just coming up on one year since the concussion and am still having headaches and other symptoms. I am doing everything I can think of to focus on healing and recovery.

Don

Hi Don,

I suffered from lingering headaches (which my doctors called a good sign of healing), bad depression, and extremely disrupted sleep. These PCS symptoms lasted long after the cognitive stuff faded. I think cognitively I was 80% of the way back after 2 months. I could read, write etc. But those other lingering symptoms and an extreme problem of lack of concentration endured for around 12 months. I was fortunate to get into college early as that application was already in when I got hurt. I went from being at the top of my class to dropping all but 2 courses and graduating high school simply based on the generosity of my school administrators and teachers. My parents were great at fighting my battles, but there were times in classes I used to ace that I just wanted to cry.

I think the first thing to understand about recovery is that it will occur. It’s slow, tedious, and discouraging at times, but given sufficient time, rest, and patience you will get better.

PCS is one of the worst types of injuries someone can endure because it is so hard to measure and understand. Most people look fine. All physical injuries have likely healed. It’s bad for athletes because teammates really don’t get it. You look fine, you move fine, so why can’t you get back out there? Teachers, employers, etc are all the same story. Even doctors don’t get it. People think just because you look fine and don’t exhibit major psychological symptoms you’re healthy and should just “get over it.” If you had PTSD from combat you would wake up screaming, be incoherent at times or something like that and people would know there’s something wrong. PCS robs you of more of yourself than PTSD, but it’s less pronounced so people don’t understand what it’s like for you. Even a significant other at times may ask if you’re faking it. Doctors calling symptoms psychosomatic are horrible, but not much of a surprise.

So the first thing I would suggest is just accept the notion that people will not understand what you’re going through unless they’ve been there. Don’t expect much of anything, even from doctors. PCS takes a piece of you that’s far worse than losing a finger or hand. Where you once excelled you are often average or even unable to complete basic tasks. No one understands how frustrating that feels as there’s very little that can rob someone of their cognitive abilities and still leave them coherent and mostly there.

Besides the Nintendo DS thing, I would say to just be patient with yourself. It’s hard to do. You want everything back, headaches to stop etc. But over time they inevitably will. Every doctor and patient I talked to said the same thing: given the time and support you will get better. When you’re going through it and saddled with PCS depression it’s impossible to feel that way, but it’s the truth.

Get your sleep under control. Stop setting alarms totally. I’m not sure of your age or situation, but every doctor will tell you good deep REM sleep speeds recovery tremendously. It took me on average six or seven hours to fall asleep, even with the drugs. (I had insomnia long before and after the concussions, so my sleep wasn’t good to begin with.) Once you’re actually asleep you need to maximize the REM hours you get. For me they were occurring at 5am and later. I had an alarm set for school at 7am, so I really wasn’t maximizing my REM hours. My advice is if possible turn off the alarm. When I did that I found the pace of recovery, mood, and frequency of headaches all improved greatly.

Try not to get frustrated. It solves nothing, adds to depression, and slows healing. Schedule simple tasks into the day that you know you can complete well. Nintendo is exactly that. What’s nice about it is it tracks the progress and helps you overcome even the most stubborn PCS depression. But any simple hand eye cognitively stimulating but simple tasks will do.

Sorry this is getting a bit long. Hang in there. I’m happy to answer other questions, talk on the phone or whatever. To give you some hope I went from first in my high school class to barely graduating. I ended up going to Princeton, graduating, and I’m in money management today. Given time, patience, and sleep I’m confident you will recover.

David

Hi David,

Thanks so much for sharing your experience and insights about PCS recovery. It really helps me to hear from someone who understands and has good ideas on how to recover. I'm not much of a video game person, but will consider getting a nintendo if that's what it will take.

After joining this group just recently, I have only now learned how important sleep is to recovery. My neurologist never emphasized that. I've been working fulltime every day since the concussion so its very hard to get a lot of sleep. I do manage to get about 7-8 hours a night. And, lately, I've been taking naps when I get home from work. Hopefully, that will help.

As for the frustration, that is the hardest part for me. I'm in my mid-40s and have always been active outdoors. But, since the fall, I have not been able to exercise as much because it makes my symptoms worse. I made the silly mistake of jogging shortly after being released from the hospital because they said there's nothing wrong with me. It wasn't til about 3 weeks after the fall that I started to have PCS symptoms. Now, I'm frustrated because I can't do much physical activity anymore. I'm too young for that!

On the cognitive side, I do notice some slowing in my processing and occasional brain fog which makes it difficult for me to focus in my work as a software developer. Early on, I noticed that my writing was not so good and I would skip words. However, that has gotten better in the past few months. My thinking is slow, but still very good. I was able to take 3 graduate level courses in the past year and excelled in them. It's more the physical symptoms that worry me.

I am going to keep your encouraging words in mind whenever I feel frustrated or discouraged.

Thanks again for your advice.

Don

Sackler,

I am glad to see you have had such a good recovery. I hope you have learned to stay away from concussion risks.

Although you may feel like you have recovered 100%, studies show you have not. Your are now susceptible to another devastating concussion. I have used less technological ways to recover from concussions starting in 1971. In non-stress situations, my recover was very high. If I was under stress, my residual symptoms were noticeable. Research suggests that my experience is normal.

We did not even have calculators back then, except for $395 HP models. I did mental math to retrain my brain. These recovery techniques worked great for many years and many later minor concussions or light head bumps. I graduated high school 23rd out of 350 even after having a full year of dismal grades after a concussion.

I suffered a moderate concussion in 1996 and used Freecell and Minesweeper to exercise my brain and recover. A mild concussion in 1999 was difficult to recover from and a extremely mild concussion in 2001 was not recoverable, no matter what I did.

The studies show that the damage from a first concussion leaves your brain weak and susceptible to future lesser concussions. As a PCS subject ages, their ability to tolerate a concussion diminishes and their ability to recover diminishes, especially after 40 years old.

The important fact to learn is that first concussions at an early age are far more recoverable. They should be taken as a wake up call to avoid impacts to the head. Concussions during puberty can be more symptomatic and spontaneously recover as the brain matures out of puberty.

But, concussions during puberty can also leave one with lifelong disabilities, especially if they effect the judgment parts of the brain. Interrupting this judgment maturing process can be permanent as the brain only develops this maturing in judgment during the 13 to 25 years.

Sackler, I would suggest that you avoid intellectually intense tasks while at altitudes, especially near or above 8,000 feet. The lower oxygen vapor pressure will magnify the residual damage to your brain.

I learned this as a private pilot. I was able to pass my private pilot written exam six years after taking the exam course while in college. As a successful self-employed person, I bought a very nice single engine aircraft ( Beech Bonanza). I did most of my flying at below 5000 feet. Once I started taking longer trips at 11,000 and 12,000 feet, I started making simple mistakes. I was not completing landing checklists properly. This can be deadly. After a few realizations, I parked the plane and eventually sold it.

Years later, I read the study ( Dr Dorothy Gronwall, 1978 and earlier) that revealed that altitude can be a trigger of cognitive problems. My problems had been after two hour flights at 11,000 or 12,000 feet. The study showed that 8,000 feet was enough to cause cognitive decline consistently in subjects who had suffered just one noticeable concussion.

btw, The Federal Aviation Regulations do not require supplemental oxygen on non-commercial flights at less than 12,500 feet. In fact, supplemental oxygen is not required on non-commercial flights of less than 30 minutes up to 14,000 feet. Apparently, the FAA does not have Dr Gronwall's study available.

So, you youngsters, work diligently for the recover that is available to you, and AVOID further risks to your head.

Thanks Mark,

I guess I’m dumber than I thought. It’s true that age does hinder recovery of all injuries, brain and otherwise. But I do think with some simple steps Don or anyone can minimize their symptoms and at least feel fully recovered. If they are recovered or not seems to me to be a philosophical question, but I feel fully back to where I was.

I’ve never had the altitude problems you mention. I’ve been a skier all my life, and my body was and is used to being at altitudes higher than 7,000 feet. I think that acclimatization at a young age may have helped me. Keep in mind that flying commercial is like being at altitudes of 10,000-15,000 feet with no oxygen. The pressurization of the plane is far lower than sea level and the air is thinner.

Your simple math, minesweeper, etc are the exact same idea as the Nintendo. The only advantage of the Nintendo is that it tracks progress from prior times in nice graphs. Those graphs are psychologically very uplifting. I found frustration with myself and my limited PCS acumen to be amongst the worst things for my recovery. Any simple exercises or devices that can alleviate that while honing some mental acuity are a plus in my mind.

David

David,

Thank you for your encouraging messages! It's great to see people who have come out the other side better. I know everyone is different, and repeat concussions can take their toll, but it's still great to hear that you've gotten through it!

I'm on month 6 of my first concussion, and month 2 of my second concussion. I haven't seen any progress at all, but I'm managing my symptoms well.

I find that the Nintendo DS, as you brought up, helps me- but in a different way. My son and daughter have them with pokemon games. I find that it helps me tune everything else out around me when I start to get overwhelmed. My husband is going to buy me my own for Christmas this year. Just being able to focus on one simple task while everything else seems like it's too much is helpful for me.

I also use the Wii for rehabilitation when I'm alone in the house. There are balance and mind games that seem to help me feel positive about doing something proactive for my recovery process. The Wii Fit also gives me a little bit of a yoga workout, so that I can keep my weight gain under control. I hate not being active!

I think for me, just feeling like I'm doing something when I feel like I can't do anything helps.

Thanks again for your positive attitude!

ps- Pat LaFontaine is a hero where I live in Buffalo. I got very excited when you mentioned his name. I admire him greatly after watching him play for so many years for my favorite team! Thanks for sharing your story and his.

Pat is a great guy. He really went out of his way to help and support when he didn’t know me from a hole in the wall. I haven’t talked to him in years, but he’s an inspirational guy for PCS.

One thing I found with working out is that endurance type exercises were a nightmare. Running would get me dizzy and leave me with a pounding headache. For some reason I could lift weights without much PCS symptoms. I’m sure everyone’s body is different though. I would say try a variety of things, even stuff you would ordinarily never consider trying. You may find some activity that works for you. The key is not to get frustrated and just keep trying until you find that physical activity that clicks.

I too find that when I run or use the elliptical I have more problems than if I ride a stationary bike. The only problem with that is that I used to be a competitive athlete and I am nowhere near that and may never be that again. I can lift weights with no problems. I used to be able to work out aerobically and not feel bad until the next day. Now, I feel like crap while I am doing it. I try to keep my heart rate around 140 on the elliptical and bike. I am nowhere near that while jogging (well over). I bought the kids a Wii fit for Christmas so I am looking forward to trying some different stuff. I do notice that when we play games that require a quick response, I cannot play. There is a game where you have to pick people who look the same and it only gives you a few seconds to find them. By the time I actually pick them out, the time is over! I feel that the learning curve is well out of my range. The kids think it's funny. I don't feel the same way!

This is a good discussion, both on exercise and brain rehabilitation.

On the exercise, I was a major fitness freak before my accident. Now I have to be very careful to keep my heart rate within a certain range to avoid making my headache go ballistic.

I do a lot of cognitive therapy, but you've finally inspired me to follow my neuro-psychologist's advice to take up video games. He said I should especially try some that require me to accumulate and apply information. I've always hated computer games, so I'm in the dark here. Any recommendations?

Cheers