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