what the hell is the point?
 

Every post that I read on this site is so discouraging. No one seems to get better, and those that do have it happen fairly quickly after the moment of injury, maybe 3-6 months. For those of us that have been dealing with this for years, what the hell is the point? Why are we even trying? I have been living in an unspeakable hell since I was 20 years old and the advice I have seen on this board is to "accept the changes in your life". How am I supposed to "accept" being tortured by these symptoms every day? It's like asking someone to "accept" being doused in gasoline and lit on fire.

Does anyone actually get better????

I would rather die than live like this.

Hello,
What are your most bothersome symptoms?
What treatments or therapies have you tried?

Everyone goes thru the stages of grief - anger & frustration is one of them.

http://ibdcrohns.about.com/cs/mental...ninghealth.htm
http://www.helpguide.org/mental/grief_loss.htm

Often the ones that recover, usually stop posting as they get busy with work & family.

Ok, I checked those links and I really don't know what to do with that information. I have tried to find "support" for a long time and have had absolutely no success. The only thing that keeps me going is the hope that I will someday get better, but everything that I read about mTBI steals that hope from me.

My symptoms are really more of an overall altered state of existence rather than a collection of ailments, but generally speaking I suffer from terrible fatigue, weakness, disorientation, cognitive deficiencies, etc. I can't eat 95% of foods. I also have developed a hyper sensitivity to light and sound. I have pain in my head, neck and jaw. The severity level of the symptoms is nothing short of debilitating.

It took me 6 years just to get a diagnosis. I tried neurofeedback for a considerable amount of time (approx. 6 months) and only experienced an exacerbation of symptoms. I saw a pcs/head trauma specialist who told me that my right parietal lobe had severely impaired function and that my brain did not know where my body was in space. I am currently doing vestibular exercises that are supposed to help but so far I have experience nothing good. I have also tried acupuncture, dietary changes, exercise, herbal supplements, etc. It has been 8 years nearly to the day since my accident.

Prior to my injury I was a very healthy and happy young man. Then at age twenty I slammed my head and SEVERELY twisted my neck in a freak accident. I got up and walked away thinking that everything was fine. Then my life began to deteriorate into an unbelievable nightmare. I could never have even conceived that life could be this bad. I have tried to be optimistic and NOT to succumb to anger and frustration but after 8 years of this hell with NO improvement I just can't take it anymore. I am not superman.

Is it possible your symptoms are related or exacerbated by a lingering neck/spine injury? I would assume since you had both as an injury, you had therapy for that as well. However, it might be worth a thought as many people who struggle to resolve their PCS come to realize there is neck/spine trauma invovled that is preventing complete recovery.

At this point I am so turned around and confused that I don't know what to do.

When I had this injury, I did hit the right side of my head pretty hard but it seemed that a lot of the force of the impact went into my neck at the point where the spine meets the base of the skull. In fact, there was such a loud CRACK sound that came from that spot when I hit, that I actually thought for a split second that I had broken my neck.

However, in the years since then I have seen a number of chiropractors, including a NUCCA specialist (national upper cervical chiropractic association) who have done X-rays and adjusted me more times than I can remember. I stayed with the NUCCA guy for months and payed him a good deal of cash because he said my C-1 vertebrae was REALLY off (and showed me the xrays to prove it) but when he was finished and said that I was aligned I didn't feel any improvement. I have also had body work and message done many times on my neck, back, head, etc.

Now I'm working with this head trauma specialist who is also a chiropractor and I told him about my neck injury but he is focusing solely on my brain. He has done a lot of testing on me and says that all of my problems are from a brain injury. He says that if I had injured my brain stem in some way I would be dead.

So I don't know what more to do. I feel so frustrated and confused and it seems like there is always doubt in my mind about what I am doing.

What other options are there to treat or diagnose a neck injury?

Have you seen a physiatrist? They are rehab specialists. I am currently doing spine rehab for my neck & lower back at a physiatrist clinic.

Have you had any MRIs yet? Or only X rays?

eddyx77,

The point to accepting the limitations is not to just go on with life as if nothing had happened. It is to define and accept the limitations so that you can start building a set of skills and tools )work-arounds and accommodations) so that those limitations have less impact on your life.

I have undergone many downward steps since my first injury in 1965. That was 46 years ago. I can't tell you all of the work-arounds and accommodations I use daily because I can no longer tell most of them from my previous ways of living. I still live a very full life only limited by my driving limitations and some financial limitations.

The constant wondering about symptoms and what they truly are leads to frustration. Getting a good neuro-psych assessment so that you have a good understanding of how your brain is and isn't functioning helps as a start.

I have very little visual or auditory short term or immediate memory. before I fully understood this, I was constantly trying to live as if those memory functions were working correctly. Now, I use other skills to make up for these limits.

There is a book written by a concussion survivor that has 365 tips and tricks for living with brain injury. Here is an Amazon link. http://www.amazon.com/Brain-Injury-S...8889040&sr=1-1

From what I understand, Dr Sullivan is no longer practicing medicine but has learned to go on living.

Tell us about your more frustrating limitations. Someone here will have some ideas for you to try.

Eowyn:

No I have not seen a physiatrist. What exactly do they do when compared to a chiropractor or an orthopedist?

Jo*mar:

I did have an MRI done way back in 2006. I had to beg my neurologist to give me one. After it came back clean he told me there was no way that anything could be wrong with my brain. I was dumb enough to believe him.

Mark in Idaho:

I am glad to hear that you are living a self-described "very full life" despite your symptoms. I know that it must have been very hard for you and you have displayed a great deal of strength in overcoming this hardship.

I wish I could say that same thing about my life. I promise you that I am not a weak person and I have tried harder than anyone will ever know. After 8 years of this I have come to the conclusion that I cannot live with these "limitations" if that's what you want to call them.

I can't see anything. I took an eye test and they said my vision is fine. Nothing is clear, I can't track movement, and I can't focus on peoples faces or objects in front of me. I can't even read. I wanted to be a writer, I was majoring in English, I got into UCLA and UC Berkeley, now I can't even read a magazine. I've heard about vision therapy but my Dr. told me that my brain doesn't know where my body is in space and doesn't think vision therapy will help me. I don't know what to believe. I just know that everything I do seems to make things worse. How do you adjust your life to that?

I can't eat 95% of foods, literally. Its not an exaggeration. Eating almost anything causes HORRIBLE reactions in my head like you would not believe. Its like the computer crashes. I can't eat anything sweet, not even fruit, no bread or pasta (even gluten free quinoa pasta), can't drink juice or milk or ANYTHING. I have eaten the same handful of foods everyday for years. I have no desire to eat anymore, I just do it to stay alive. Everything that I put in my body, even herbs or herbal tea, medicine of any kind if it involves my digestive system can be detrimental. My Dr. says that the part of my brain that the vagus nerve fires into when my digestive system is activated is damaged and can't handle the stimulation. I have also wondered if the vagus nerve itself is damaged somehow. No idea how to figure that out or what to do about it.

The fatigue is debilitating. I have tried to push myself physically by going on long walks, doing yoga, doing push ups or other exercises, it doesn't matter. I am still on most days so weak that to walk to the top of the hill to get the mail is difficult and disorienting. My Dr. says that its basically like I am walking around with giant foam shoes and thick goggles on, my brain has lost connection to my body and the world around me. How am I supposed to adjust to this?

As if all of that wasn't bad enough, last year I tried doing vestibular exercises and I pushed myself too hard. I wanted to be better and instead I made myself so much worse. Now as a result I have an incredible ringing in my ears (I had it before but not as bad) and an extreme sensitivity to sound. The ONE thing that I had to keep my mind off of this nightmare was my guitar; now I can't even play my acoustic anymore because the sound is like a drill in my brain. Even the sound of people's voices can set me off. Again, how am I supposed to adjust to that? Its been that way for the last 8 months.

I'm sorry if I seem so negative but I am at the breaking point. I'm 28 years old and my life is worse than my 70 year old neighbor's. There were so many things that I wanted to do with my life, and now I can barely watch TV. What is the point of living like this?

Sounds like you are having a really difficult time. I am only on month 6 and already extremely frustrated, so I can only imagine how I would feel after years of this.

My physiatry clinic is specifically for neck and back pain. The physiatrists evaluate your symptoms, range of motion, etc. and then prescribe an exercise program that very gradually increases strength. I go twice a week and work out with a PT or rehab specialist. My particular clinic has specialized weight equipment that very specifically isolates the muscles on either side of the spine. I just started a couple weeks ago and WARNING: it feels worse before it feels better. Apparently this is not uncommon, but my clinic reports that 2/3 of people who complete the 9-12 week program do not need to seek medical attention for back pain again.

As I understand it, the major difference between this and chiropractic is that a chiropractor manually adjusts the bones of the spine. It can be a good complement to muscle strengthening as it correctly aligns the spine so the muscles are holding it in the proper position.

Not sure about the difference between physiatry and orthopedics.

Also wondering if you have contacted your local Brain Injury Association. Mine provides referrals to brain injury clinics, where they might have a variety of different types of rehab.

Hope you're able to find some solutions and/or peace soon.

Peace and Hope
 

I hope that you find some peace in your life. I feel for you and I am glad you are here talking about it. That is what this place is for, support. Support is a very valuable thing to have when in a difficult situation like this. Sometimes, support and the relationships I build with others is what keeps me going through a painful and discouraging time in my life. I pray that you find the help that you need to get you through the pain. :hug:

eddyx77 : I am in a similar situation like you and been 2 years now. 8 years!! I can't even imagine what you are/were going through. But I can relate some of your symptoms. Terrible, imbalance (good analogy by your doctor), eye contact etc., The tough ones are I cannot around people and have a conversation without getting dizzy and headaches. I really have to try hard to look at some one's eye and talk and if I do I get disoriented. I don't go to restaurants, malls etc., anymore. I do have to to to store and it is a night mare everytime. My legs gets weak and I get nauseous too. I have to go in and out in 10 mins in any stimulating place. I cannot find work around for many symptoms.

I wasn't able to watch t.v., be on computer etc., for few months. That was terrible and you can't even read a magazine and sure is hell. I can understand that. Some symptoms improved and some got worse. For my main symptoms I still cannot find any reliefs.

Because of all these symptoms I am pretty much confined in my apartment most of the time. I did have some mild Irritable Bowel Syndrome before head injury with few work arounds and new probiotics I even forgot I have that. After my mTBI it got worse too. Most likely bcus of all the nasty meds doctors put me through.

I did my share of chiropractors, HBOT, acupuncture etc., and exhausted all my savings. I do some part time work from home just so I can pay bills and keep going to doctors/therapists (with no change in my symptoms). I also did Vision therapy for 2 months and didn't see any improvement. But my rehab doctor believes most symptoms from my vision so I may try that route again. Before I was so optimistic with anything I try and now I just go without any expectations.

I do want to go out and enjoy the world or atleast go to the park next door. Each time I try I end up terrible. I cannot walk one block without feeling dizzy. I live in a great city which has lots to offer (Washington D.C metro). Summer used to be my fav. time and lots of hikes, festivals etc., Now all I can do sit and look outside my window. some member mentioned how being in a Hawaii can be tough with PCS. True that.

I know a 90 year senior citizen who does biking, dancing, traveling etc., and enjoying his life. Even he feels very sorry for my condition. I am in my early 40's.

I do think what is the point. If you think you are escaping this PCS hell do you know where you end up. We can only think we are escaping. I also think what kind of guilt/agony my family and some friends has to go through rest of their lives.

I don't think there is one pill or surgery or therapy to fix this. All we can do is keep trying. One thing I really do try before giving up is Stem Cell Therapy. Only clinical trials are in U.S now and you have to travel outside U.S. If I can tolerate the long flight I sure would do it.

Ok so to clarify, does a physiatrist only deal with physical pain, like a physical therapist? I do have some pain in my neck but mainly my concern is that something is wrong with the nerves or that something is blocking the normal flow of blood or energy or something like that. As I said, I have seen a bunch of chiropractors and X-rays have been taken. I'm not concerned about neck pain as much as I am about dealing with my brain injury. Do physiatrists do anything specifically for neurological or nerve function?

Thanks in advance.

Thank you for your kind words. Unfortunately I do not feel that I have the support that I need to make it through this. While an online forum like this one is certainly better than nothing, it doesn't do a whole lot to stave off the horrible sense of isolation that I live with every day. I would really like to build more relationships with people but I find it very difficult.

I'm really sorry to hear your story. A lot of it sounds very familiar, but I don't find that comforting at all. Instead it makes me very sad to know that other people on this planet have to suffer through this hell just the same as I do. If there is one thing that I am sure of it is that no human being should ever have to feel this way for even a single day. I wouldn't wish this upon my worst enemy in my darkest hour.

2 years is a very long time. I hope that you will somehow find a way out of this. If you do, please let me know. I promise that I will return the favor but I would advise you not to hold your breath. The last 8 years have been so terrible that I really can't even think about it or I will just break down. As I mentioned before, I spent 6 years without an accurate diagnosis. That was the hardest part of all, feeling this way every day and being told that there was nothing wrong with me and that it was all in my head (no pun intended). The neurologist who laughed me out of his office set me back 3 years. I shouldn't have let it affect me so much but he was the last in a long string of dismissive jerks with "MD" behind their names who treated me like dirt and confused the hell out of me.

Anyway the past is behind me. I want to believe that I still have a chance at a normal life but its very hard to see how that will happen.

You mentioned stem cells in your post but I am confused as to how exactly that would help with PCS. Do you know anything about that? Are there any known or documented cases of PCS being successfully treated with stem cells?

Just wondering because I have looked online and haven't found much.

Lastly I wonder if you have considered neuro-feedback. I didn't have much luck with it but I am told that it has really helped some people. Best of luck to you.

eddy,

The stem cell therapies with promise would not be much help for PCS. Nerve fiber regrowth and such other therapies that aim to restore nerve conduction will be the likely successes. The diffuse axonal injuries of PCS will require some miraculous drug that stimulates axonal repair. The problem is the amount of time it takes for axons to make proper connections once they start repairing themselves.

As you start understanding each individual symptom, it is likely you can find ways to limit when those symptoms manifest by altering your environment or efforts. We can refocus our brain's abilities into tasks and functions that are working by avoiding any tasks that will strain our brain's efforts.

A simple example is how I can focus on thought processes. It makes a big difference if I close my eyes while I try to process thoughts. By stopping the output of brain energy to the visual processing part of the brain, I can put that same energy into the thought process.

I used to be able to drive, eat, listen to the radio and read a map at the same time. Now, if I need to read a map, I need to have my wife stop the car (no motion stimuli), turn the radio off ( no auditory stimuli) and sit quietly while I put my brain into focus to read the map.

The simple concept is called "Stopping to think." We need to stop the other brain tasks so we can think.

As we start to master these systems of isolating brain processing power, we can regain many of our previous functions.

If talking with a person is a struggle, observe what your brain is trying to do. Is it seeing the visual background behind the person?
Is it distracted by other sounds? Does you shoe have a sore or tight spot that is distracting your brain?
Is your bladder telling you that you should find a bathroom?
Are you late for an event and the anxiety of getting to that event is distracting you from hearing the other person's voice?

There are often very simple reasons for the difficulty with the current task. We just don't have the experience to see the obvious cause of distraction or confusion. As we learn to recognize these distractions, we can develop the skills to overcome them.

Some of them are not able to be overcome. I cannot talk to someone when there is background voices. No matter how hard I try to focus on what they are saying, the distractions keep cutting in. So, I move to a different environment without the sound distractions or put the discussion off for a time when the distractions are not a problem.

btw, Your experiences with your doctors are par for the course. If they cannot image it or observe it with an EEG or such test, the brain injury does not exist. Yes, we all understand when they say it is all in our head. They just have their meaning wrong.

My best to you as you struggle to make sense of your brain.

My clinic does deal specifically with back and neck pain. I am not sure how broadly other physiatrists might be able to work with rehab. Here's a website that may have some more info: http://www.aapmr.org/patients/aboutp...ysiatrist.aspx **

The other thing is that neck injuries can be very tricky to detect. In my case, even before concussion, I had a pinched nerve in my neck that never made my neck feel bad at all. The pain referred to my shoulder blade, headaches, and tingling/numbness in my fingers.

I also recently read of a baseball player who recovered from lingering pcs symptoms such as dizziness and imbalance by working with a physical therapist who manipulated the cranio-sacral joints. http://sports.yahoo.com/mlb/news?slug=ge-koskie022409

What I am trying to say is that because there are nerves involved, a neck injury may cause other symptoms besides just straight-up pain in the neck area.

I do hope you're able to find the answers you're looking for. I am an English teacher, and my concussion has been extremely disruptive to my self-concept because I have so much trouble doing things that I consider core to my identity such as reading, writing, and multi-tasking. It is not just a simple physical issue.

According to this FAQ, physiatrists do also deal with neurological issues such as TBI. http://www.aapmr.org/patients/aboutpmr/Pages/FAQs.aspx

Another thing I read about recently is hyperbaric treatment for nerve regrowth. Some combat veterans with TBI have had success with this. I don't think it is likely to be covered by insurance, though.

HBOT (HyperBaric Oxygen Therapy) is best for those with severe TBI and other more severe neurological damage. HBOT, when used shortly after the injury can be beneficial. It has not been shown to be much help for the less severe injury that comes with mTBI or concussion.

We need to keep in mind that there are two levels of recover for TBI.

Many with severe TBI are considered recovered when they get to a functional level that is similar to PCS. That is, they have lingering symptoms that are similar to those that PCS sufferers are struggling with.

Recovery from those lingering PCS like symptoms is much more difficult. Many therapies focus on learning to overcome those limitations by learning new functional skills.

Eddy, Have you tried finding a TBI Support group? The camaraderie you will find in such a group can be very beneficial. Most will be recovering from more severe TBI and living with symptoms similar to those you are experiencing. Seeing others with positive attitudes toward life can be very uplifting.

Getting anxious about that potential wonder cure is an futile exercise.

My best to you.

eddyx77 : I feel the same way as you feel. No one should put through this agony but as you know millions suffer after tbi (mild or severe).

One member in this board went to China to get stem cell therapy (SCT)and not sure how much success he had. He sure improved and don't come here anymore I think. I had bleeding on brain (contusions) and still have evidence in MRI (minimal encephalomalacia). So that is the reason I am thinking but still researching. Most of the good treatment is in China and India. In India you can google for Geeta Shroff for SCT.

I assume PCS is also a mild form of TBI. If not I am not sure what PCS is either. So you have to look for SCT for TBI. Regarding stem cell therapy it is at infant stage right now but making a huge progress in many fields. For TBI there are many success stories with SCT. Many doctors still don't believe in PCS unfortunately.

SCT is at an infant stage right now and already seen success where conventional medicine gave up on them. I personally know some one who had Muscular Dystrophy where doctors gave only few years and with SCT he not living but making a good progress with movements, breathing etc.,

SCT is an experimental procedure and there is no guarantee and what happens long run no one knows. There is even a chance things may get worse after therapy. I am considering SCT only if there is no hope of recovery and/or condition keep getting worse.

I just post few and as I said it is not specific for PCS but overall for brain injury.
http://articles.timesofindia.indiati...y-cell-surgery

http://www.facebook.com/pages/Stem-C...575461?sk=wall


Also you hear stories where people recover remarkably and go back to normal life. I have few relatives, friends, neighbors etc., some who died unfortunately and rest of them recovered with no lingering issues and went on with their life.

When I talk to them and ask if they have any issues even like headache, sleep disorder etc., they say no issues and they are doing fine. 2 of them drinks heavily, smoke etc., and got into accident after drunk and was in coma for few days. After 6-8 months they recovered very well and started doing all the bad things all over again as if nothing happened. I know quite a few of them with mild to severe and all are doing well. Few months ago I met a fit gentleman in his 50's and was in coma for few weeks six months ago after TBI. He was in wheel chair but now slowly walking and he was an avid bike rider. He has none of the symptoms I have. He was so sure he will ride back again in few months and I wouldn't be surprised. Even in this board many people recovered but don't post much after recovery and carry on with their life which is good. So most of my family members and friends are surprised I am still suffering.

I did Neurofeedback and did saw some success. Because of TBI my olfactory system/frontal lobe damaged and had terrible smell disorder. Now it improved a lot but in the beginning immediately after Neurofeedback bad smell,headache/dizziness went down a lot but only temporarily. All my symptoms comes back the next day when I wake up. I went for many sessions and the effect didn't last long. I tried HBOT but didn't find much success with that.

As for any treatments/therapies/meds unless you try there is no way to know. This board is really helpful what all treatments/therapies/meds exist. It is up to us to try. I will be soon going for a Sleep Study as well since my new Neurologist wants me to do that. His thinking now is after 2 years I have to keep pushing it hard. He also prescribed very low dosage topomax and said it is only a try. Atleast he is not pushing any heavy meds and thinking in a different way. Yoga, tai-chi even dance lessons he wants me to do. Some yoga/tai-chi/exercise I am ok but not dance lessons. If I do dance lessons I am completely recovered that means. Who knows it may or may not help?

I sure keep you posted if anything at all and you please do the same.

You say you had a pinched nerve in your neck that didn't cause you neck pain but gave you headaches and tingling in your fingers? Well how exactly did you figure that out? Was it the physiatrist that discovered the pinched nerve, and if so how? And how did you end up getting it treated?

As I mentioned before, the severity and intensity of my neck injury was such that for years I was sure that there was something going on there that had been missed. But like I said, I saw the NUCCA chiropractor who adjusted my C1 vertebrae over a period of 8 or 10 weeks (it was a while ago) and I didn't experience any noticeable improvement. He took a series of x-rays of my neck during that period, could he have missed something significant? Wouldn't realigning my spine free up any pinched nerves?

Sorry for my ignorance about this, its easy to get confused.

The link about the baseball player is really great, thanks for that. It makes me hopeful but also makes me sad. It seems like this is a never ending rabbit hole you can just keep running down. Its very tiring and frustrating but the other option is just to give up. Maybe I should call the PT mentioned in the article and ask him what he did. I have tried cranial-sacral therapy and had bad reactions to it. Of course I am left wondering if it is a bad form of therapy or if I just saw a bad practitioner.

I'm sorry to know that you struggle with your sense of self after this injury. I can very much relate. It feels like I have been stripped of everything that made me who I was. Good luck to you and thanks again for all your help.

If you read the articles and "research" papers about SCT for neurological injuries, you will find many inconsistencies. You will also find that there is a very limited number of clinics doing the therapy. If the therapies were so good, they would be done at many clinics worldwide.

Mike went to China for his SCT. His benefits are unknown because mike was trying every therapy under the sun. He appeared to have vast financial resources to spend on these therapies.

The simple logic of how the brain works shows the likelihood that SCT will help and injured brain. The brain has billions of neurons. Each neuron has thousands of axons (up to 10,000) These neurons and axons are organized over a 25 year period. Some rudimentary skills are developed during the first year of life and during gestation. Getting new neurons to grow and organize will take years to just start to notice a difference.

Those who suffer comas and other severe injuries have brain cells that become dormant. They are stimulated into action through therapy and continued challenges. The coma is the brains reaction to the severe injury. It goes into coma to cause the cells to become dormant so that they can heal. Even cells that are not damaged need to be dormant so they do not cause stimulation to the injured cells.

Rehab specialists follow strict criteria to avoid over stimulation as the brain starts to bring dormant cells back on-line. That is why current PCS protocol calls for cognitive rest. Cognitive Rehab Therapy is not even suggested until many other milestones have been met.

The anxiety I see in many posts is counter to healing. Getting anxious for a cure-all therapy is just as bad. Getting anxious from comparing recovery rates and wondering why you are not recovering at the same rate is also stressful.

So, remember that severe injuries with coma are very unlikely to have any comparison to PCS. They will likely have some focal injuries that will take years to heal if they even do heal. The rest of the brain needs to be re-awakened from the dormant state and retrained. Notice how some with severe injuries have complete intellectual/cognitive function but dysfunctions in motor skills or other specialized brain functions.

The "doctor fix me" demand is of no value. It is more a patient heal thyself. Or at least, patient, take a disciplined approach to your life and help your brain heal slowly in the ways that it can. The spontaneous recoveries are due to individual circumstances. We can not expect to have those same circumstances.

I have seen the ups and downs from at least 14 notable impacts to my brain. I started learning brain recovery skills in 1974 when I has a serious relapse of symptoms. The most important skill was stress reduction. We all have choices we can make to lower the stress levels in our lives.

Hope you can make some good choices.

My best to you all.

Dear Eddy
 

Dear Eddy,

I have been reading this thread and have been wanting to respond to your post for a few days.

When I read your entry I was so dumbfounded.

I can't even imagine how hard it has been for you to suffer for eight years.

My one and a half years seems so small.

I have been thinking of posting a reply but I just never knew what to say or how to express my deepest sympathies.

I would be lying if I haven't thought "what is the point?" on a daily basis.

Then I thought "With whom have I been hurt the most?"

And I realized those "friends" or people that don't acknowledge my PCS.

So, this is me acknowledging your suffering as a fellow twenty-something PCS'er.

I'm sure that the hundreds of viewers on this thread feel similarly.

Best wishes.

Hang in There
 

Just hang in there. I know that is is difficult. I am here if you need to talk. Thank you for putting yourself out there and becoming vulnerable and you're right...an online forum is better than nothing. :)

I went to a physical therapist (because all my doctor did was throw pain meds at me), thinking that I was going in to see her about shoulder pain. When she evaluated me, she found that it actually was a neck issue. Among other things, I had quite limited range of motion in my neck, though didn't realize it.

I had several months of physical therapy for that a couple years ago that helped a lot. That's partly what makes me so optimistic about the physiatrist clinic, because they are doing similar things at higher intensity.

I hear you. your singing to the choir . I have good days and bad days . When I have a good day I tend to push it too far. so after a good day. I have a few bad days. but I had a good day . that gives me hope that there will be better days . since you can't read now .maybe you can get books on tape or satellite radio . they play old radio shows.I know it is not much but it is some entertainment . whoever reads this to you should be able to help you set up something . and as for writing . I have not typed 1 word . I speak and it types so u can record your thoughts and have someone else type them.or you can get it voice command technology 4 your computer . if you were a writer you still are a writer. and I bet through all of this you do have a book in your head . good luck hope this helps some.

yar69,

When you have a good day then overdo it and have a few bad days, some research suggests you have undone the small step of progress you made to get to the good day.

The goal is to link as many good days together as possible. By learning the triggers or overload limits, it is possible to avoid them and link many good days together. I even learned how to rest up to prepare for a more intense day.

It is very difficult for me to respond to eddyx77. You bear a terrible burden. I am in my my 4th year. Luckily I had great doctors (all but one). My GP sent me to a good neurologist. A neurologist may run many test to rule out non-PCS problems, but his great contribution was sending me to cognitive therapy. Then to a competent neuropsychiatrist.

I had learned a lesson in a terrible fashion. A decade before my accident my ex-wife had a brain injury due to toxic chemical exposure. I hope I don't sound cruel, but this beautiful and talented woman seemed to embrace he disease, not deal with it. She refused cognitive therapy, seeming to dismiss its value. She developed Multiple Chemical Sensitivity.

The end result, she left me to find a new life, but hers has turned into a disaster. Her self-treatment rests on alcohol.

When my injury was diagnosed as PCS, I vowed to seek the best doctors and undergo the best treatment. I won't work again, ever. But I do hope to wake up each day looking for progress. I hope you follow much of the advice on this Board and work towards physical and mental improvement. Take joy where you can find it, small steps forward. And take comfort in adapting as well you can to this horrible injury.

Willjan

Sorry to hear your state.

I was the same as yoy, wondering what the point of life is living like this...

Everywhere i turned there were no cures and I took it upon myself to find different ways to battle this problem.

Here's a thread i made with a list of things that have helped me.

If you need someone to talk to, Pm me your phone number or I'll PM you mine. You are not alone in this... And you must thank the powers that be that your are still alive and breathing. This is what has helped me most... Knowing that we could all be dead now... But we were given a chance to live.