Negative Energy
 

This forum is full of negative energy. It really needs an overhaul. I believe when people visit they are filled with anxiety and hopelessness.

Like today, I just checked in and I saw people reporting how their deficits are permanent. I am barely holding on and need to believe I will get better. I can't see these types of stories.

I know plenty of people in person who have gotten better. Where are these people?! Tell your stories! We need this more than anything!!!

You may be spending too much time reading too many threads. What posts mentioned permanent deficits ? I have not seen any lately.

I have stated many times. Brain injuries are permanent. But, improvements are attainable for all but a very few. Rehab experience shows that the best recoveries happen when the patient accepts their current state of injury and symptoms and uses that as a foundation to move forward. When we constantly look at things as "I can't do that." versus, "I'll do that activity a different way," we get stuck in negativity. Moving forward despite our struggles allows us to rebuild our lives and reinvent our lives.

I have lived with horrible PCS limitations but can't understand why so many dive for a dark cave every time they encounter a struggle. I've had to leave stores, restaurants, church functions, etc. Over time, I have learned how to moderate these events so I can attend most of them.

Our lives changed when we got injured. But, we still can live a full life.

What have you tried to do to reinvent your life so you can move forward with the struggles you have ?

Danny,
It is human nature.
When folks are doing well they don't need to vent, seek support or communicate as often.
Just like your post, it is negative and complaining because you are upset about something and that is OK. Maybe start a post with a title called, " Please give me good news about TBI and PCS". That may get more posts with good news but in my experience on forums, folks move on with life when feeling better and don't post as often.

I wish you the best Danny....I know it is frustrating to hear bad news all the time.

Take care,
D.

I wasn't complaining at all but saying what I believe the majority of folks feel who visit.

Surely, one cannot "overhaul" a forum of real people in different phases of dealing with what has happened in their brain/mind/body after TBI/PCS??
Everyone here should feel safe to respectfully express themselves and find the support and information they need.

I agree the negativity on here gets to me too. I can't fault the people posting it (I've certainly posted my fair share!), I fault me extrapolating others' experience to my own. This is hard for me not to do, but I feel like I am getting a little better at not doing that.

Anyway, I'll try to add some positivity with a small success and example of a workaround I had today. I'm a grad student studying evolutionary biology, and before my accident I was doing loads and loads of cricket matings, mating a female of one species to a male of the same species and a male of a different species (I study a genus of Hawaiian crickets that forms new species very rapidly, so it's a good system to study how new species form). Anyway, all these experimental females had a bunch of offspring, which I collected and put in the freezer shortly after they hatched.

While this was happening I was super busy with a double teaching load, and there was really no way around just putting the crickets into the freezer in a somewhat disorganized way. Fast-forward to now, I have about 4,000 nymphs distributed in a barely organized way among about 50 boxes. I need to extract DNA from some portion these nymphs and then do paternity analysis on families of offspring, but to do that I need to know where everyone is.

I took pictures of all the labeled tubes where the crickets are frozen in all the boxes, and have been slowly going through the pictures, taking an inventory of which crickets are in which box. Doing this by myself took a toll, with a lot of computer screen time, and translating each label (made with my less than stellar handwriting) into a word document. I ended up enlisting the help of my parents, calling them to have them record me as I read off the labels. This way I didn't have to read and type, which was easier, and there were no errors in reading the labels. I still could only do a handful of boxes at a time, but over the course of a few weeks, I finally finished today.

Haha, probably too much information for everyone, but I'm glad to have this out of the way, and can now proceed much more easily with the rest of the experiment, and am one step closer to figuring out what's going on!

A Windows computer has voice recognition to text. In Win 7, it is in Accessories, Ease of Access/voice recognition. You can speak the information, including comma, new line, tab, enter, etc.

There are a few "ease of use" features in most computer operating systems that are worth checking out.

Anybody who has struggles, just post them and somebody likely has a work-around for that struggle.

Danny,

As far as recoveries, notice how the people who posted two years ago don't post anymore--besides a rare few. Read some of their posts. The hope and healing sticky has some stories I believe.

I've been where you are recently--hanging on by a thread it seems. I'm 19 and two years out. 4 months ago I was depressed out of my mind. 2 months ago I had a week where I was as close to suicide as ever.

But the past month has been a complete turnaround. Please read and take the posts--mine inclluded--seriously. I've been depressed with most setbacks I've had, but I feel like i'm done thinking like that.

It starts with a shift in mindset--basically what Mark said. This doesnt mean unrealistic pie in the sky thinking.

You have to want to live. Find the reasons. Find the reasons why you don't want to live and if you can control any of them, change it, but realize lots is out of your control. Accept it. But you DON'T have to let it control every aspect of your life. Will it influence most aspects? Probably, but you still have control over lots of things.

My friend has PCS bad. He has constant migraines and fibramayalgia. His head is at a constant 9--i bet most people would say a 10--and his back and neck are like rocks from the constant spasming. He has nerve pains firing up and down his back constantly. He can only sleep an hour or two at night. He has bad anxiety. But he has a beautiful attitude.

He cracks jokes all the time. He tells me this gets him through the day ," embrace the pain. Don't be it's B*!*@. and that God has a plan for him."

Frankly, I let PCS rule me for probably a good 7 or 8 months out of this past two years. No one is going to tell you it's not traumatic, but if you don't get yourself out of the hole, you're going to continue experiencing trauma.

My healing process hasn't been the greatest, but I have read other posts--SpaceCadet for example--where the healing didn't really happen until 2 or 2.5 years after the injuries.

I find it hard if I only have a reason or two to keep going, but that's what I needed just to start. The whole mindset is what one wants. Here are a few examples of the type of thinking that one needs to do more than survive.

When you get a negative thought, stop it ASAP. Don't ruminate about sad things as much as you can. Take a breath and enjoy the peace of breathing.

I can't do this or that any more, but I can do these things...

I have learned this because of PCS...MEditation? Healthy eating? patience? Empathy? Trust?

Make jokes: The most pleasurable thing I did today was fart...
Seriously go out of your way to make jokes. Helps so much. Or read/ watch funny stuff.

This bath or shower feels fricken great right now. This dark chocolate is delectable. The wind on my skin feels...

Bud told me he struggled (hope this is okay, Bud) mentally early on, but each day he woke up and figured there was a reason he was still around.

Hockey had an old post where she said when she's having tough days she tells herself, "i can get through today because I got through all my yesterdays."

Faith has helped me. I don't know if you are religious, but a few prayers a day help my anxiety of the future and keep me at peace.

It doesn't all have to come back to PCS ruling your life. It could be worse. You could have a worse condition. It can and will get better.

Please just don't give up, and make the effort to change, even if you feel stupid or know you're just telling yourself BS at first.

Honestly, I'm proud of you and everyone with PCS. It's traumatic. It's hard as hell. You are a lot stronger than you think and I know you just want a break, but you gotta overlook that.

First of all, I didn't mean to lash out earlier. I was in a bad place and it was inappopriate. I ensure you that my intentions are always good.

JBuck,

Thanks for your thoughtful reply. I agree with what you said but beyond PCS, I have had a fairly rough life. My mom died when I was 19 a few months after my best friend who was only 18. My other friend died in 2012.

The latest thing was as I was experiencing a setback. (I was doing so much better and then stress got the better of me and my brain) My dear older brother of only four years older than me passed away unexpectedly. So I just had to deal with that - the funeral was on 9/6 a day before my 27th birthday. You can read my post about that. Anyway, PCS might not be the worst thing in my life but it is another loss. The loss of my former self. Someone I admired for getting through all the past struggles. I think this is why it has been so hard. I can't get myself to rest because bad things do keep happening in my life.

I'm fighting with all my might and really appreciate the constructive and thoughtful posts.

I'm sorry you've had to go through all of that. Sounds like a lot. But Here's one of my fave quotes:

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”
― Kahlil Gibran

I hear you.

The things that helps along the way:

(1) prayers/blessings to heal from spiritual leaders and community

(2) attitude - manage your anxiety

(3) friends and family

(4) medications (from a psychiatrist)

(5) therapy (from a social worker/psychologist)

(6) vitamins, manuka honey, VSL#3 (probiotics), healthy diet

Stay strong! Hang in there!

The people who get better leave - and that is the vast majority of them.

Look around, most TBI members have very few posts. The vast majority are "members" or "junior members." "Senior members" are rare. Designations above that, almost unheard of.

When I look at the big picture, I think it's actually quite encouraging. I do wish more people would check back in and report their success stories. When you recover, I hope you will do that. However, I do understand that, for those returned to health, NT has served its purpose and they have gotten back to their lives. Yeah!

Those of us with staying power are the exceptions because we've had exceptional injuries. Some have suffered multiple impacts and/or severe head trauma. Others got their TBI in MVAs, sustaining several other injuries (spinal cord damage, lost limbs, etc...) that have left them with chronic issues with mobility, pain and emotional trauma.

What Mark is saying is so, so true: I didn't really start to recover, until I stopped denying my injury. Once I stopped thinking I'd somehow just get back to 100%, I started working on the adaptations that have made my daily life so much better.

Yeah, I am still disabled and, barring a medical miracle, always will be. However, when I compare my initial prognosis to where I am now, I think, "WOW!"

If I can do it, anybody can.

Mark,

Why do you think all brain injuries are permanent? What about people that say they feel they have recovered fully from PCS? And why couldn't the brain heal fully if you take supplements, sleep well and exercise?

The brain is not like an injured muscle. It does not regrow and replace cells like the rest of the body does. It can't because it needs to keep those cells because they have information stored in them. So, those cells need to heal. Some do but some don't. Slowly, some new cells grow but not to replace the injured cells. Unfortunately, the axons and myelin sheath between cells do not heal very well. They can function is a weakened state but not at the same level. This leaves the brain in a weakened state and more susceptible to dysfunction with the next concussion. This is why lowering stress is important.

But, permanent injury does not mean permanent symptoms or dysfunction. The brain is very good at adapting to injury and finding new pathways to make up for weakened pathways. It takes effort and many repetitions to help the brain establish these new pathways. It takes discipline to help the brain recover.

Neuro-plasticity is amazing! I found the documentary "The Brain the Changes Itself" so inspiring. www.youtube.com/playlist?list=PL77A7359E49522204

When I was injured, I beat the odds, just to survive. Then, the neurologist told my husband I was a write-off. We just refused to accept that and went looking for therapists willing to help me.

I had to work my butt off, but I have come a long, long way. We all can!:grouphug:

I had wonderful support from the medical community, family and friends. To share a positive story, my NPA upon release from hospital said in part:

"Patient shows significant difficulties with visuospatial learning and recall, as well as mental flexibility and multitasking. He displays weaknesses in aspects of executive system functioning (retrieval of learned information, mental flexibility, abstract reasoning, problem solving, and verbal fluency).”

After three additional months of outpatient therapy, a second NPA said in part:

“On examination, the patient demonstrated intact cognition in all domains assessed including learning and memory, attention, processing speed, language skills and executive functions. He has shown an excellent recovery from his severe injury only five months ago. From a cognitive standpoint there are no concerns with respect to the patient returning to work full time or returning to driving”

Healing can and does happen.

This is amazing, great to hear!

Can you please share with us the things you did in order to recover so well from your injury? Did it just happen spontaneously, or you got a certain treatment that helped you recover more efficiently?

ProAgonist,

I bet that if you were assessed with an NPA, you would show to be as capable as Lightrail. The therapies he underwent were to get him from a seriously dysfunctional state to a highly functional state. You were never in a seriously dysfunctional state. You were mildly effected by your concussion. Your OCD, anxiety and such causes you to overstate these minor struggles.

Lightrail is not back to 100% of what he was prior to his injury. But, that does not matter. He is able to return to a full and functional life. The little setbacks he may have from time to time don't reduce his ability to live his life because he does not let them.

I've have overcome what felt like insurmountable PCS. You, too, will recover. You are not cognitively limited forever. The brain is complex and far from being comprehensively understood; making assumptions about its regenerative capabilities are, at this time, sorely ungrounded and subjective. All this to say, keep a positive mindset. Regression to PCS does happen occasionally, but one day, you will awaken to a clear mind. Take care. Don't lose hope.

It certainly wasn't spontaneous. A spent a month inpatient in Barrow's Neurological rehab at St. Joseph's hospital in Phoenix. I was fortunate to have a physiatrist MD that is recognized as an expert in rehab for TBI survivors.

I had daily physical therapy (was still in a wheelchair at that time), occupational and speech therapy. Some of the therapies included board and Wii games, building Lego models, solving sorting problems, stuff like that. Tasks that help rewire damaged synapses. After hospital discharge I continued outpatient therapy. As memory and task accomplishment starting coming back I started working part time from home. Getting back to tasks like data analysis, communicating with co-workers, and just starting to feel productive again helped a lot.

My family also got me a "therapy dog", my little pug Keona.:)

My ongoing therapies include mindfulness meditation, yoga and monthly massage therapy.