Educating others on PCS
 

For all the fellow PCS sufferers out there....


Do you have any advice on educating friends/family members/loved ones on the nature of PCS or its effects?

I've been gathering articles on the subject and posting them to my blog (unfortunately, most of these have been some of the horror-story ones from professional athletes, mostly American football. I live in Pittsburgh and most of my friends and family are in or from Western PA, so this is the context I felt would sink in most ;)), unfortunately, it seems like most or all of them aren't reading any of the things I've posted and referred them to. They seem to fall into one of three groups...

A)the group that thinks I'll get better with time, especially if I don't do things that involve the risk of further concussions

B)the group that doesn't quite get how bad the symptoms are. I had to explain to my roommate repeatedly with analogies like "See these shoes? 2 days out of 3, I have to sit here for 10 minutes trying to figure out how to tie them." All I get back are blank looks.

C)the group that has mental disorders that are more conventially treatable, and think that because their issues were corrected by medication, mine should be as well. Most doctors and neurologists won't prescribe anything but antidepressants for me since nothing really shows on a MRI or CAT scan that points to anything. I actually lost a relationship with a girlfriend in this group over some of my more erratic behavior about 5-6 months ago, and she was always adamant about me poking and prodding every head doctor I could get an appointment with, because that's what she had to do to get meds that helped her with her bipolar disorder.

Any suggestions?

Thanks :)

I've tried to explain it a thousand different ways to my family and friends, but I really don't think there's any one thing you could say that would bring people to understand what you're actually going through. At this point, I tend to just tell people how I'm doing at the very moment that they're talking to me, as opposed to how I'm doing within this grand overarching context of "my injury".

It's weird though - I've been getting a lot of good therapy for a long time now, and although it's yet to bring me all the way back permanently, it has brought me all the way back (or at least to a place where I wouldn't know the difference between where I used to be and where I am) for short stretches of time, and even then, when I was only an hour or so removed from an unhealing brain injury that I'd had for 4+ years, I couldn't understand my own PCS problems that I had been dealing with for so long.

I actually find this odd fact comforting... it's like, if I can make it out of this, I'll be so far removed from where I am right now that I won't even be able to understand where I've been for the past 4 years. To me, that's the ultimate in liberation.

Invisible disorders
 

It's hard for others who've not experienced the numerous bizarre affects of brain injury, to "understand". Even those of us who share this common ground have unique & varied experiences, symptoms, manifestations. It's very difficult for family, friends, Beloveds and even medical professionals to deal with "invisible' disorders....
often I don't understand what I'm going thru, let alone try to "explain".....
I've had plenty of days I really thought I was crazy but know there is a Real reason, that these head injurys have changed me, in ways I don't like.
I continue trying to understand, and seeking ways to deal--personally and via professional help & treatmts.
some DRs have been (trying) to help, by treating more tangible symptoms I present--like headaches, sleep disorders, pain....


I empathize with your frustration of NOT getting help or treatmt from professionals or understanding from Beloveds. Unfortunately the brain is still not well understood, and the subject of TBi or more so Post Concussive syndrome is controversial .



There are so many things that can & do occur following brain injury; some may appear or even become "psych" issues --NeuroBehaviorial,etc- that may be organic -damage that hasn't shown up on tests you've had.... or may take time to figure out what's going on or how best to treat....

some of the "psych" meds could help, depending on your symptoms; some people with TBi /PCS have been helped by antidepresants, anti-anxiety, AED's (anticonvulsants) & other meds for sleep, mood stabilizing, pain, etc.

But these require Dr to prescribe. If I recall your PCP wasn't too helpful?? have you seen a Neurologist, or some other "brain injury specialist' ; some physiatrists--Drs of physical medicine & Rehab - can be good. Maybe even psychiatrists--tho they tend to often be pill pushers. Neuropsychologists are often recommended- may offer insights & help and different kinds of testing & support.
there are other Neuro-specialists --depending on your issues....

Some report benefits of bio or neurofeedback; also acupuncture & other alternative therapies....some have been discussed in forum. Many swear by physical therapy; meditation, focused breathing & "exercises" like yoga, tai chi, chi qong are "mild" & have numerous benefits....

Try to avoid or control your Stressors; and to stay Positive (easier said than done, I know) --you may get "better", or you may go thru periods of improvements & regressions. this has been my experience and can be very frustrating.
Know there are people who do understand & will offer support & can empathize, like the folks here in this Forum.
Have you checked out brain injury support groups in your area. They can be excellent--for info, referring to specialists in your area & more.....

keep researching, to inform & educate in whatever ways you can. Web does have info... tho it's quite variable and does takes time & energy to find things that are relevant to your experiences.
Also posting here, as things come up.... this forum may not be as active as some others but at least we do have a place for Our issues, to share, vent, inquire, etc...

continue learning all you can for your self. and keep trying to share what you learn.... as well as your experiences... Hopefully, those who care about you will "get it" ..... at least you will be more knowlegable & "empowered" ....

I spent much time searching , researching TBI/PCS; I tried to post this info w/ Links, that I thought might be helpful, insighful , informative.
when this Forum first began, and wasn't as "active" as I'd hoped.... I didn't know how to make "stickies" for reference but did use a Green arrow to indicate (if you go back to oldest pages, you may find these.
I tried to focus on "mild" TBI (seems much more info for severe TBI w/ the horror stories you referred to.... but there is other info. and support)

I hope this makes sense.... I can confuse my self!!! PM me if you want more details.....

I will be going back thru these posts again, as I need to again. I just incurred another head injury past week, and feel in many ways I'm starting this crazy cycle all over again. If/when I find info/Links that seem good or appropriate I will let you know. I do recall finding sites that had great info for educating family & friends.

What matters most is you. While it would be nice to have understanding & support, seems we often have to become our own best friend & advocate.

I hope you find what you need; Pray for the Best in this process....
Blessings...

Yep you hit it pretty much on the nose. I've been dealing with this all
and more. I find new things to battle daily. So good luck.

Donna

I did check the green arrow/links on the TBI links-those were helpful. I have a lot of water to lead the horses (the friends/family/loved ones) to, but that doesn't help if I can't get them to drink (read) it.

As far as the tai chi and other relaxation tips, I have been looking into those as I also have borderline high blood pressure too (swings between 120/90 and 144/112 at rest)--I wonder if a lot of the episodes I have had, which coincided with stressful situations, is tied to this, as in the symptoms get dramatically worse when my BP 'redlines'

It's been hard to see specialists in neuro-anything because to get coverage by insurance, the PCP has to refer me to them...and all of them are convinced it's depression and load me up with Xoloft or Wellbutrin or Paxil.

You might have your pcp look into this too. Its called ortho hypotension.

I'm Getting ready to have a tilt table test. My blood pressure goes down
when I stand up. And up when I'm sitting or laying down. THis seems
to be what is normal.

ONe of the first things they do, is have you wear the support hose, which
I started wearing for leg and feet swelling. And then this started.

So its really got my pcp baffled. I'm also to make sure I drink lots of water,
and eat lots of salted things. Which is hard the salted things, I hate salt.

But I'm being good, and I really upped my salt intake a lot. And my water is
doing really good too.

Donna

That's the exact opposite of what my PCP recommended as far as salt intake goes. They'd been trying to get me to lose weight just for general health reasons, and so far I've managed to drop about 20-25 pounds since Jan 07.

I just want to thank everyone that has contributed in this particular thread. As a PCS sufferor for more than 3 months, I found it very helpful.

Also I think many of us with post concussion syndrome don't really think
about the fact that its a cousin or relative to TBI.

So maybe when we try to explain to our friends. We need to use this relationship more. And explain that they are very much alike. And that the
symptoms can be identical in many ways.

And that the biggest difference that I can see is the way you get the injury.
Because lots of TBI are from car accidents. And I don't believe that many
PCS's are. THey are more from falls and sports injuries.

So maybe explaining that to many the Traumatic part is the car accident.

So if you do it this way, many understand that a TBI, is sometimes a very
serious life threatening situation or at least takes time to recover from.
But there hasn't been as much until recently information for PCS but with
the fact that they are realizing how many more kids and teens are being
injured with this in contact sports in high school its becoming a issue.

So also maybe tell them that many more high schools are being told to tell
their teens and parents to watch the kids that have reported such situations
because its not a fast recovery.

Donna

Yes, PCS is a brain injury, short and simple. There is no question that all you PCS sufferers are healing from a brain injury. This seems to wake up the uneducated. PCS is a series of cognitive, physical and emotional symptoms in responce to a brain injury. They need to respect this as such.
Nancy

Thank you for that Nancy!! I have been asking the insurer's psychologist for years and he kept trying to tell me that PCS is in the mind and not a brain injury. It made me keep thinking Is my brain injured........ ????? The good old self doubt in action again! People simply do not know what major effect a poor choice of words can have. I also asked him would it be ok for me to go bungy jumping - and guess what - he wouldn't give me an answer!

Nancy, I meant to ask you if PCS is Brain Injury does this mean it is Brain Damge? Would long term be Brain Damage? Hope that doesn't sound weird to you. My porblem as I have been told is that I am not nice to myself and don't make allowances - I believe that I do - but Brain Damage some how seems like my problems/ symptoms are justified . What do you think?

Am I overreacting?
 

Here I am on my third month and I am still having some lousy days, two weeks ago I had a dizzy spell where I tripped and actually managed to sprain my two ankles! It is just sooo hard to wake up every morning and sometimes it takes a long time to just get the energy to get going and start doing things. My job keeps me long hours in front of the computer, I don't know if that is making it worse, can't be avoided though. I am also having a hard time making people understand what I am going through. A very close person told me resently that it was a question of attitude! Sometimes I doubt myself and wonder if I am not overdoing it, but this overwhelming drowsiness every morning is beyond anything I've experienced before... headaches are not too strong but they are frequent, and I get recurrent neck pain as well. I am also over sensitive to light and loud noises. Some days it feels like I'm getting better but then I'll wake up in the middle of the night with my head and neck all achy, feeling soo tired and yet unable to fall asleep again... I come to this site once or twice a week just to feel that I might not be so crazy, or lazy, or exaggerated...

I don't think there is any way that people who have not had this PCS could understand what it's like. It's been almost five month for me and I still feel lousy every day. Mornings are usually the worst, although I never had any problems with fatigue. Headaches and dizzyness are terrible. I was given gabapentin (Neurontin) by a neurologist for nerve pain and the side effects were awful, so I quit taking it after nine days and I feel like it has set me back by several weeks. Now my head hurts more and I am more dizzy that I was before. There is no magic pill!!! It did work for the head discomfort, but it was not worth it.

The computer also increases my headaches and noise was a big issue with me -- still bothers me some. Does anybody else have problems with bending forward, like emtying the dishwasher or dryer, it hurts my head.

Well I've never been a person with many friends, but I can say that the few friends that I have had, and the co-workers that I had, before (mostly) giving up on trying to work, and every family member are in as much denial as we are, and for those of us who have had this condition for a while realize all too well, the power of denial is very, very strong. The urge to deny that anything is really wrong or that it's just temporary is just so intense. Words cannot even convey how strong the desire was for me. It was hard to make it real that I was brain damaged, and that, my old life as a relatively normal functioning human being was over forever.

If it is that hard for us to accept, we who are the constant victims of our own seemingly persistent and willful scatterbrained stupidity, just imagine how difficult it must be for someone else who cannot get inside of our foggy, blocked, minds. All they see (at least for mild TBI) are behaviors that would seem relatively normal for someone to do every so often, once a month or a few times a year maybe, but we are doing them maybe 10-20 times every single day.

Of course if you have a 'moderate' to 'severe' injury you may not be able to walk or talk or understand speech or you might even still be in a coma. In that case I would imagine it would be much harder for family and friends to deny that anything is really wrong. Although I had significant language problems in the first few months after my initial trauma, and no one in my family acknowledged that anything was wrong at all. Even though I couldn't understand them when they were talking to me and even though I would slur my speech and stumble over words like English had become a foreign language to me, they *still* wouldn't believe me. In the face of that kind of willful blindness, I have no idea what could possibly convince them.

At first I found it maddening that no one ever seemed to understand or appreciate my condition: how incredibly awful it is not to be able to trust your own mind to do *anything*. And of course what we actually can or can't do is always a guess. You can't really know until you actually try it and fail. We can never have any confidence in anything. Ultimately if you can't even trust your own brain, what can you trust?

Now I accept it more and just avoid the topic to whatever extent is possible. I never tried to hide that I had brain damage (except maybe with girls). At the first sign of any sort of cognitive/organizational difficulties I am quick to remind myself and anyone who may be with me that it is not my fault. It is the head injury. It's not like I would intentionally go to my car without my car keys 6 times in a row each time forgetting what I came back to get by the time I arrived inside. I tried to limit my self-blame very early on, and I truly believe that otherwise I could not have survived.

If other people want to be willfully stupid about my condition or anything else, there is very little that I can do about it. For so many people anything that is not visible is just not real at all. They have to be able to see and touch whatever it is. And so much about our condition is just so strange. Initially when my symptoms were more severe I would try to use the analogy of a dog. I would ask them to try to imagine, really imagine, what it must be like to be a dog. Like if a dog could talk what might he tell you? No future. No past. Only the present. No real language abilities. That sort of thing. Of course if they are willing to read a book, that might be one route to some degree of understanding. Another possibility might be to have them watch the film, "Memento".

Yes,I have problems bending forward to garden etc. I get a bad headache and become dizzy. Anything that jerks my head or shakes it even slightly gives me a head ache. Travelling in a car is not good, doesn't seem to be so bad if I drive, I don't know if it is because I am hanging on to the steering wheel and you can anticipate any bumps or what. I can't spend longer than about 20 minutes at a time in a shopping mall as I can't cope with the lights and noise - the noise is unbearable. I did try playing tennis a year or so ago but that is too jerky and gave me a headache. I find the easiest/ kindest form of exercise is walking - provided there is nothing to trip over - as I am accident prone. I can't do any exercise with my head down. As far as getting others to understand I wish that I could think that I have now got to the stage that it is tough for them if they don't but at times it does get upsetting as I feel that I am having to justify myself. And yes, when I avoid doing anything because of my head I do wonder if I am just being lazy even now after 6 years of this!

Lucy,
Your brain injury created some brain damage. It is still not quite understood on what structural level, since there is no present tool to measure this. You are healing from your brain injury, so the extent of the damage could change and completely heal or other mechanisms could stregthen and compensate for some permanent issues. I think understanding that you have a significant challenge is helpful and makes it less frustrating for you but be hopeful that you can improve your quality of life and heal. Having goals for healing and staying positive will certainly improve things. There is so much not understood about the healing brain and I am very hopeful for you all.
Petenera,
There is so much to respect and admire in the "seemingly persistent and willful scatteredbrained stupidity" that you describe your efforts and the efforts of other healing souls like yourself. Stay strong and positive, you may have an injury but the core of your spirit and who you are as a person is still the same. You do not have to mourn your past self. You just may be a little shaken up in the brain but will always be the same soul you were at birth. No injury can take that away from you. I hope you will be able to exercise in a meaningful way again and find some people in your life who have patience while you heal. I am feeling optimistic that there will be better days.
Nancy

Lucy, I have the same problems in cars, although it has gotten a lot better. I agree that when I'm driving I have better control of avoiding bumps and slowing down gradually. I still drive only short distances and not at all if I feel to dizzy. I wonder if it is possible to desensitize my head. If the pain is caused by overactive nerves and tense muscles, shouldn't there be some kind of exercises to to? I still can't sleep on my back because it hurts my head. I guess I need to ask my neurologist about this and hope he has an answer.

Nancy, thank you so much for all your support and please keep us updated on your son. How is he doing? Is he free of all symtoms yet? I hope school is going well for him.

thank you Nancy.

Sissy, at one stage my muscles were so tense in my neck and shoulders that I couldn't raise my arms above my shoulders. A few weeks of physio cured that. One of my problems though, has always been that when I am very very tired, my head feels as though it is not attached to the top of my spine properly. I have tried to explain this to different specialists - to no avail The physio said that is normal with PCS. I feel that it is not muscular as I have learnt how to relax the neck shoulder muscles - is there anybody else with this feeling???: or am I imagining things......

Lucy and Sissy,
My son is doing very well. He claims he has no symptoms, he is driving a half hour to school each day, running, and taking 5 difficult subjects in school and doing well. We have a neurology appt this Monday to discuss his desire to wrestle again. I am giong to tell him that he just cannot do it and he cannot continue to flirt with this possibility. One more shake up and I think his ability to heal to a no symptom level may be impossible. Thankyou for asking. I have learned alot from all of you. as I try to keep him on the correct healing path.
Nancy

Nancy

Good luck with your getting through to him.

Hopefully there will be something else he can do. Is there anyway he can help the wrestling coaches without wanting to wrestle. I personally
figure not. But thought I'd ask.

I am really knowing how hard this is going to be for you and for him to understand.

But hopefully there is another sport or something he can do instead.

I know that in my own case, I'm much older with other issues too. But each
time I've fallen, or caused a small thing, its made it worse. I'm guessing though it started as a child.

I right now am not even able to continue to improve with my balance and other issues. I developed bursitis of the shoulder. But that is life right.

Donna

HI Nancy - thank goodness no more wrestling - the risk is simply not worth it. Just never forget that concussion is compounding. I have found that the next bump starts off where the other left off. And each time it takes less of a bump to start off again. My GP tells me that those that shoud never bump their head again always appear to - though that is a balance co-ordination thing as well. I know you can't wrap your son in cotton wool, but tell him to be very chosey about what risks he does take with his head! I wanted to put a cool icon on the end of this - I'm not able to attach it!!

Thank you for your kind words. But you have brought up something, well, the one thing I found most interesting about my head injury. Like many head injury victims I recovered a great deal in the first 3-6 months. But, initially, especially in the first month I was very impaired. I had tremors. I couldn't regulate my heat properly. I would feel like I had a fever and then be shivering with cold soon afterward. I had a lot of trouble sleeping and could only sleep on one side (for a long time actually). And of course I had serious memory and organizational problems and was nearly always in a brain fog. I had difficulty understanding people who spoke fast. Especially on the phone. I couldn't read and really understand very much. I stumbled over my words when I tried to speak. I must have sounded like English was not my native language. But the most interesting thing was that I really felt as if I had lost my 'soul'. That the essential me was just gone. That is truly how it felt. How it seemed.

I have always been interested in philosophical questions and I was sort of fascinated by this. First of all the dog analogy I gave before is pretty apt. That *is* what it feels like. It became crystal clear to me, that the only thing inside of us that represents our 'soul', all that feeling of 'me-ness' is just our brain. That is all it is. Before my injury I suspected that that might be the case, but I was never 100% sure. But I could really feel that that 'me' was just gone. Vanished. I guess it is one of those things that may be impossible to imagine if you haven't experienced it. Again, I think the only way to get close to imagining it is to find some animal like a dog or a cat and observe it and really try to imagine how it might think. So I guess my answer is that our souls exist only as an aspect of our brains. When we damage our brains enough it is possible to lose the essence of who we are. To permanently lose our souls.

I guess I have been somewhat luckier than some in that I did gain back (at least I think) much of my former personality after maybe the first year of recovery. But until that, and especially in the first few months I was a completely different person. Virtually all of my character traits were different for that period. Actually a few things seemed to be an improvement. For instance I lost a lot of my shyness and nervousness around people (social phobia). I guess since I wasn't able to feel most emotions very strongly (anhedonia?), I didn't feel much fear either.

I now regard a head injury as one of the absolute worst things that can happen to a person. Along with psychosis (to a lesser extent), it is about the only way a human being can actually lose their very identity. That is about as close to dying as a non-comatose human can get without actually being dead. Speaking of which if I had not recovered significantly in that first year I would definitely have finished the job by taking my own life. There was absolutely no point in living. I didn't enjoy anything anymore. I couldn't enjoy any of the things that I used to. Not movies or books (which I couldn't understand), not computer games (which no longer seemed fun), not food which I lost interest in. There was nothing that held the slightest interest to me anymore. I mean without my brain, without being able to think there is no point in anything anymore.

Of course there are other conditions that I wouldn't want to have like any sort of chronic pain or not being able to walk or being blind or deaf. Any of those things can be bad enough to make life not worth living. But nothing quite gets to the core like literally losing your own mind.

treatment for Post concussion syndrome
 

Hi All

I was diagnosed with PCS 6 months ago. I was given anti depressants and anti vertigo pills helped but nothing else. My neurosurgeon told me to see a cranial osteopath. I have had 10 sessions with her and the dizziness has gone the headaches are not as painful. As head got better neck and shoulder pain got really bad but again they are becoming better.

I am feeling so much better have even come off the pills. I am also about to start back at my job after being off for 8 months. A bit worried about that as i work at heights for some of the job and will see how the vertigo is this time. I hope this helps.

Regards bigjfa

I'm glad you are feeling better and hope you can continue to stay well Bigjfa. Gojirasan, what an amazing story and thanks for articulating your thoughts during your very rough recovery phase. I am hoping you find that although much of you is not "up to par" with your former self, that you like something about the changed healing self. I work as a critical care nurse and see alot of patients suffer and each journey is experienced differently. I understand how some patients feel when they become suicidal. I think you are on your way to better living and you seem to be more in touch with all that you are doing and listening and expressing your story to others, strangely is healing. No one can know for sure but I feel that we all have a certain energy that is our soul or core self and that it is specefic to us. Liking that self by my observation is the start of happiness. This is just something that I have felt. You should be very proud of your accomplishments to this point and I hope this pride, that is so well deserved, can bring you some happiness. Stay well.
Nancy

Lucy and Dmom,
My son and I had an appointment with his doctor yesterday. It did not go as well as I had hoped. This doctor is a sports medicine physician, neurosurgeon, concussion specialist who sees many, many, PCS victims. He has also written many books, a consultant to national boxing associations etc etc. He sees alot of famous local atheletes who have suffered multiple con cussions. My point in telling you all this is that he still thinks it would be O.K for my son to wrestle again. I know that it is ultimatelty still in our control but i was hoping he would not reccomend it. He said he would not want to keep someone from a passion and it was clear to him that my son was very passionate about returning to wrestling. He said it really was an intermediate sport in risk factors for concussions and that driving a car was also a risk. He was happy that he was not having symptoms and that he thought it would be o.K to go back to wrestle. When I talked to my son on the car ride home, he told me that if he could not wrestle, then he would have nothing in his life to look forward to. I realize that he is 16 almost 17 and immature but his feelings are very strong about this and he becomes very emotional. I am afraid of the reprocussions of forcing him from it. This is now going to be very tricky. I am thinking about letting him work out with the team and seeing how that goes. I pray that this does not end in disaster. You should see how excited he is to start training with the team again. Maybe he will realize how foolish this is in time. The doctor was saying that usually the kids that are injured do not want to go back to the sport. He was quite encouraged that my son has been able to run and work out without symptoms, this is the reason he is not limiting his sport participation. I understand that there is a fine line between protecting and keeping safe and then also living a happy life. I will keep you informed on where this is going.
Nancy

Nancy, I have not responded straight away about your son, as when I first read your reply I got tears in my eyes. So I thought I should sleep on it. I still don't know what to say really other than we are all different and have different brains - der that is dopey - if we weren't all different the world would be a sad place. Please make sure that he is careful as if this had happened to me when I was a teenager I don't think I would have coped. Best of luck.

Lucy,
Thank you for your kind reply. I have read some of your posts and see that you are the classic example of reinjury and you certainly understand by personal experience the cummulative effects of multiple concussions. Did you have a car accident 30 years ago after the head injury in hockey when you where 16? I still think you have some healing potencial, since you keep reinjuriing yourself, even as recently as a few weeks ago. It seems that any small jarring to the head can set you off because of those two significant past injurys that have left you very vulnerable. I am hoping you can have at least a years time of no injury so you can get to feel a little better. It does seem that rest and low anxiety living is the best therapy. You seem to have a great attitude and a sense of humor is so great to have and probably very therapeutic. My son has a good sense of humor too. Keep on plugging at it, I think things may settle down in your head in a bit of time if it's not banged again. Do you have trouble in the back of cars etc. I asked the concussion specialist we recently saw about the dizziness and why it is such a classic symptom. He said they believe it is when the pain is shaken up it damages the vestibular nerve and when this nerve is injured, the patient has all this dizziness. When the nerve heals, it goes away. When a patient gets symptoms back again, it is a sign that they are not healed yet and need to back off. Anyway thanks for staying in touch.
Nancy

Nancy

Maybe the part about the dizziness is one of the things you need to make sure your son really understands. Make this one of the things during practice especially that he has to pay attention to.

Its possible that this part will keep him safe in practice. I would also really
have a good discussion with the coach's and make sure they understand what all this means. So that they can be on alert too.

I can totally understand this for you and also for him. Good luck.

Donna

Hi Nancy, thank you so much for your ongoing support and I hope your son will be fine. I found the part about the vestibular nerve very interesting as I am still having problems with dizziness or what seems more like my perception is off. It affects me mostly outside of my house while walking, shopping, etc. I feel like my brain can't take things in fast enough and I have to slow down. Also big stores get to be overwelming. I need to ask my neuro about this when I go on Thursday. Again, thanks!

Sissy,
You are still pretty early in your recovery, May right? I bet in time your dizziness will get better gradually until low and behold, it has been a long time since you have had the symptom. I would not be too discouraged when you get symptoms back, I bet you bounce back quicker, when they do come on. I have noticed this with my son, when he would get dizzy and foggy again, he quickly recovered with rest and they did not linger like they did in the begginning. Hang in there, I think your prognosis is very good. I am sure it is so hard to be patient and it can be so frustrating to have setbacks.
Nancy F

@Nancy F

I appreciate all the feedback you've given me in the last couple of days.

I'm always been a very competitive and athletic person, so I fully understand how much one can get out of sports and athletics. But, having participated in many sports, I also realize a very similar sense of accomplishment can be had by really pushing oneself in any of them.

I don't know. The idea of wrestling to me at this point just seems like lunacy.

There is a tendency in our culture to be hard asses and to praise all this "can do", "never give up", "buck up", and "be tough" nonsense. We love to hear Lance Armstrong's story, but we don't want to hear about the countless other cancer victims that DIDN't recover. We think science and medicine must have the answer to everything. We ALL tend to have this exaggerated notion of the bodies resiliency. My mom's shoulder still hurts sometimes 10 years after she injured it. That's just the way it is sometimes.

Anyway, I think your son would be wise (and I say this from the perspective of someone who probably understands him all to well) to try and find the worthiness in such traits as caution, discretion, hesitation, and restraint. All totally under appreciated in my book! Fanfare for the common man, if you will.

I didn't ride a bike for about 5 years after my accident. I didn't consider it cowardly at all, but rather wise. And though I might get on one occasionally now, it's always with a helmet, and I never go faster than about 10 mph.

I think cross country is an excellent vehicle for letting out all that competitive spirit, particularly for someone who has had a concussion. ;)

If that's not exciting enough for him, he could try the 400m and work those fast-twitch muscles some. In either case, as far as I know you don't hear about too many running related head injuries.

Anyway, that's just my 2 cents. I'm sure as a mom it's tough, but maybe you could try and subtly steer him in that direction. Go out and rent Chariots of Fire maybe? Hee hee. I think there was a TV movie out recently about the first guy to break the 4 minute mile.

e-head,
Thanks, lunacy is an understatement! My son is almost 17 and way too trustful that this is behind him and being 17 does not help! Wrestling is a sport he went into 2 years ago after doing boy's gymnastics on a team for many, many years. He was great at gymnastics and when he left that to wrestle, he had alot of success and this respect from his teamates thrilled him. He does not get the same success in cross country and I imagine this is why he is pushing to go back. As of now, he will just be working out with the team!! He is also successful as a student and I am hoping, now that he is doing an independent study in Science, that this will feed his self esteem enough. As we reviewed his history with the neurologist, he remembered falling off the high bars years ago and then was a bit dazed and he forgot his routine after. This was probably why his healing after his wrestling injury was so delayed. He told the trainer at school, he is at war with his parents. I admire his motivation but his vulnerability and the danger of further injury frightens me. I will remain vigilant as a parent, and hope for the best. Soon I am going to have him read some posts here to give him some information but I don't want to depress him too much. Thanks again and hope you are feeling better.

Nancy F.

Don't know if you have access to the Neurology Now but there is a wonderful article that you and your son need to read. About this specific subject in last months magazine. At least I believe its last months. I usually get a copy of it. But I didn't get this one yet, but read it in the Psychiatrist and psychologist office of my sons.

Anyway, I think it might help your son put this in perspective. It wouldn't be you saying this to him it would be professional football, basketball, wrestlers,
and other sports people saying the things we say.

I was amazed at what I was reading. I'm sure hoping I get a copy of
it in the mail still. Or that if I did get it and just missed it I find it soon.

It was the Oct./Nov I believe.

Donna

My Neuro gave me the magazine and the article was a good one. Gaye :)

Nancy - your son
 

I was being tactful before - tact does not come easily to the brain injured!. Maybe you could tell your son that when I was 14 I hit my head on the bottom of a swimming pool, then at 16 I was knocked out playing hockey - I got better - then following all this is those accidents that you can not predict or do anything to prevent - my car accident at 21 and then all the little knocks in my 30s and then the tiniest of knocks in my 40s - less than any of the others that have resulted in how I am now. My last concussion 3 weeks ago was simply brushing the top of my head on the top of the door frame putting things in the car. In truth I don't think anybody could have warned me about this when I was a teenager but your son has been "lucky" enough to have been warned. Hope I don't sound like a drama queen - your son will think he is being nagged - tell him it is because none of us would wish how we feel on anybody!! By the way my name is really Lynlee.

Thanks guys, I'll try to get the article. You are all a wonderful support. Hope you have a good day!

Hey Lucy... I found this board after simply brushing my head under the sink! Granted, I hit it about 3 months ago on a filing cabinet at work doing the same thing... getting up too fast and not paying enough attention to where my head was. In both cases I was in a hurry and trying to get a lot done.

Anyway, I'm just floored that such insignificant hits could seemingly bring back all these PCS symptoms. I bet the one thing we all have in common is at least one serious concussion in our past. Little knocks on the head that most people don't even think about can become a big deal. Surely not that much damage could be caused by these little knocks!

It's been exactly 3 weeks and 1 day, and I feel considerable better now, thank God. After this, I'm seriously considering wearing a helmet around the house now as I do chores! It would go a long way towards making me feel safer! I don't care about how ridiculous I'd look.

I was cleaning up a bit yesterday (it's the first time I've had ANY energy to do anything in 3 weeks), and I noticed an involuntary bang of apprehension anytime I walked through a doorway. It's like my body and mind are hyper sensitive to anything coming within a foot or two of my head.

Hope you feel better soon. I was really bummed for a week or two there, but I'm really encouraged by how much better I feel now.