Time behind bars & spinning for further recovery?

[Karl_M]

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Happy New Year and live YOUR LIFE!

I had a “Traumatic Life Change” (TLC) on June 26th 2010. This all happened on my daily 40 plus miles bicycle commute to and from work. At approximately 5:10pm on a residential neighborhood street where I have been bicycle commuting for the past eight years. The only conscious witness (the actual 24 year old male car driver) reported to the Portland Police that “I Just fell off my bike” and he could not avoid hitting me, running over me, and dragging me under his car for thirty feet. I believe that he was texting while driving and to date there has been no charges against the driver! The Portland Police filed this as a ‘No - Fault’ accident! This series of events left me with a Severe Traumatic Brain Injury (TBI) with Diffused Axonal Injury (DAI). I was in a coma for thirty two days with a very low Glasgow score along with spine fractures in five locations, skull in three, right leg in four and a broken hip and had thirteen titanium screws set in to hold it all back together. While I was in the Hospital for just three months, I was asked to sign Foreclosure papers on my home that I had owned for the past six years as I could not make payments for that period of time, or even begin to know how to while recovering from such a severe trauma! For me as TBI survivor this an education about myself and about your supporters. After five years I have just now finally have come to accept and understand that I am Severally Disabled, Wow I said it! I have to understand my new self in that my processing speed is nowhere close to where it was prior but I still enjoy pushing myself. I don’t think that people really understand what TBI is all about. They kind of treat my accident like I sprained my leg and not damaged my personal processor (Brain) forever! You look GREAT!?! I started to return to work on a program called ‘Work Trial’ after going through a Neuro & Physiatrist exam to work again back at Nike. I had been working there for the past 8 years as a Sr. Tech Designer ln Sportswear and then as Sr. Tech Designer Men’s and Women’s Tennis. My Nike HR contact told me that I was not up to the level that they could hold my position for me and they would not create one for me. I would have apply to ones felt right for me. Post my unchosen working situation, I then contacted an Employment Org that helps people with Disability find work. I was told through this Org that Nike does not reinstate any employee post a TBI.

I did not receive any kind of information post leaving the Hospital about how to regain my brain strength back, so I set out to do it myself. I went to a local University study on Nutrition for TBI individuals and this is where I had met a TBI survivor that told my about Neurofeedback. I went for three months to a Naturopathic Physician, BCIA certified in Neurofeedback. My Naturopathic Physician also advised me on Herbs and Vitamins to support good brain health along with gargoyle exercises for speech strength and cerebellum exercises for balance. Wow, I got so much more information from my Naturopathic doctor then from my standard health care provider (Ritalin)!! On my last (13th) visit for Neurofeedback, My Doctor advised me to consider about becoming Probiotic, a balance between your gut and brain, so I did! My Neurofeedback sessions were straight out of my pocket because my SSDI or Medicare does not cover it! I personally feel like Neurofeedback was like turning on a switch within my brain! Here is a web site on Neurofeedback for your information: https://www.site.ochslabs.com/what-is-lens . I would highly recommended this to any TBI survivor but do your own research first! I also tried to work on receiving HBOT treatments (Hyperbaric Oxygen Therapy) into my budget, but I could not afford it. The FDA has not approved HBOT, but I have found plenty of information on how it supports TBI & PTSD individuals in other countries. I am now an active participant in my local TBI Support Peer Group meetings in which I am working as a volunteer Web Master and peer note taker. I have approached the Boards of Directors and have scheduled speakers from Nutrition, Neurofeedback and Speech Therapy. I am just trying to share information that I believe has been a crucial part of my own recovery with other TBI Peers.

Being a TBI survivors individual has taught me to Push Myself and Push the System each and every day. I am a TBI survivor living independently without a TBI life coach. I have independently cultivated my own daily ‘TLC’ self-prescribed routine for brain health. This consists of: daily meditation, cerebellum exercises, consuming fresh organic juice made from fruits & vegetable with protein mix, incorporating vegetarian holistic nutrition to my diet, becoming Probiotics, thirty minutes daily online brain games, exercise by bike commuting to my part time job (16 miles) in my chosen profession along with weekly Velo track time, being sociable, volunteering in the bicycle community, and listen to music when I lay down for the evening. I had three months of speech therapy post leaving the hospital and wanted to receive more but I hit my SSDI maximum time allowance for speech therapy. I received an email from a TBI network contact about speech therapy performed by Grad Students at School of Communication Disorders at Pacific University. My speech pattern has always been at a fast pace and I believe that this is partially from my upbringing with my Mum and Pops being from upstate New York. I now have to set a counting strategy for each word that I speak and have to consciously pace myself when I am pronouncing Multi Syllable words while incorporating breathing exercises. I was a very gregarious person before TLC and now I have to be less talkative as strangers sometimes think that I am intoxicated because of my speech.

Being an open minded and an optimistic individual (occasionally stubborn), I thought that I would use one the elements that was part of my ‘TLC’ as a positive brain health routine, to help with brain support. I researched on what are the best type of physical exercise to increase cognition and found out that in descending order they are: Ballet, Martial Arts and Riding a Bicycle. In all of these types of exercises, you’re asking your brain to multitask in so levels simultaneously (balance, near & far perception, reaction time and judgment). In the past six years I have completed fifteen bike century (100 miles) rides. I wanted to push myself even more so I took up Velodrome Bicycle Track racing.

Here is a little information on Velodrome track bikes and riding on a Velo track. The bike must be fixed gear. With a single speed bike it could be set up with either a rear cog gear set as “freewheel” meaning that you can coast or a “fixed gear” meaning you cannot coast because if the rear wheel turns so does the peddles/chain-ring. Velodrome rules are: (1) Must be fixed gear. (2) Bike cannot have any brakes. (3) Must have dropped Handlebars (pista). (4) Locked/Clipped shoes into your peddle. This all means that one is really directly connected to their bike and it’s very challenging both mentally and physically. To be totally honest, this did take me a wee bit longer amount of time to get use to riding a Fixed Gear bike and I believe that this is largely due to being a TBI/DAI survivor but also due to the fact that riding multi-speed freewheel bike for the past decades. The Oval Velo Track that I go to has 43 degree banked corners and on the straight are thirteen degrees with one lap being 286 meters. I went to Velodrome Development Track classes for two summers in a 4 months period of time renting their track bike. I wanted to make my own track bike but have it set it up with a different gearing ratio as the rental bikes had a higher gear ratio, due to that they are intended for beginners. I also wanted more time riding a fixed gear bike to and from work (Spinning Meditation) to get myself better at this. Building my own 100% custom track bike from the frame up all while living on a fixed income was an education. This would be my second frame up bike built but in a very different way, as I had to download the specifications for track bikes to ensure that I didn’t waste any coin ($). At the track, cyclist often would change the gearing ratio by changing the rear cog gear size and at times even the chain-ring for each event. Because I am on a fixed Income, I could not afford to buy different chain-rings and cogs so I searched for the highest number of teeth on a fixed rear cog and then applied the gearing ratio range that I felt comfortable with to find the right chain-ring size ratio. On the average it would take me one full lap to come to a full stop. To do this, I have to slowly apply back pressure to each peddle stroke while reducing my cadence.

Here is my Track Bike link that I hand built from the frame up that took me just over a year to assemble. I wrote this post in a Bike Design G+ post and so it might be a little bike Techie in details as I was writing this to a certain audience. Challenge yourself and read it? https://plus.google.com/115893960526187521638/posts/D7uFLiLDQeG
Cheers>Karl aka Kajomo

[Rick1]

Unable to type long, need sleep for work , ah yeah, today:)
I am stuck riding a bike now, due to wrecking the car I just got a year ago, minus the first car wreck that caused a lot of injury, this car accident didn’t harm me, but totaled the frame. Hit a curb on a sharp corner that grabed the frame and tweeked it a bit:(
I need a used bike, and I am wondering where I can look for one online, a mountain bike, or, ? Never road anything other than that? So far I am guessing to look on Craigslist for one?
Live off PT work and SSI. OK, Thank You, ZZZzz…
Rick
rickyd227 at gmail dotty com, ya get?
Rick

[Okrad]

I am glad you are doing better. I also dumped the medical people. I go to the gym a lot and eat very well. Mostly exercising like an athlete. I also took fish oil and many other things.
What hurts most of all is that I have a chromosmal abnormality that effect neurons so althoiugh my tbi was “mild” it took a lot out of me.
When I did not recover as they thoight, they had the nerve to say I had a personality disorder. That really hit me hard.
I no longer go to any kind of psyhcologist, not even a neuro shrink .I will not go near them.
I am doing much better, but the biggest thing is like you said, I push myself to the extreme. Sometimes if I feel bad, I am at the gym for 7 hours even if I am crying in public. Then I sleep well and have a better day. It’s a small price to pay and beats wondering around crying at home.

[Merl]

Hey Okrad,
I, like you have given up on medical having all the answers. I must say though, that prior to me stopping seeing them, I exhausted every avenue they offered. Once they started discrediting symptoms and labelling things as a psychological issue, a tolerance problem and a personality disorder and placing all responsibility back on me in the form of blame, I quit seeing them. As if any of us are here by our own choice, nobody would choose to be here. And certainly not I. I now see the dr’s for medications only. I can be my own worst critic, I do not need a Dr to add to that.
I know you say about pushing yourself to the extreme. I know for me, I can’t do that. I have in the past pushed and pushed, but eventually my body pushed back and damn near everything shut down. In elite sports they call it ‘hitting the wall’, where your body rejects everything. I know my psychological tolerances have dropped and my idea was I needed to rebuild those tolerance levels both psychological and physical. Although I pushed those psychological limits it was those physical limits that were rejected. My body simply said stop and I didn’t listen and my systems started shutting down. I agree that we can fall into a pattern of doing minimal, which is not good. But I must also stress doing too much can be as destructive. There needs to be a balance and everybody’s balance/limits will be different. We all need to gauge this for ourselves. Using other people’s limits is impossible. For example if I did anything like 7hrs in a gym, it would kill me. I understand that may be your limit, but 5 hours of decent work and the following day I’m bedbound and attempting 5hrs would be a good day, but I’d pay for it for the next week in agony.

Merl

[Karl_M]

Rick1,
Well I have got to say Fight you’re Battles.

Bike, I would go and get sized for the Mtn. bike that suites your needs best. If you are not sure of the exact size of bike to search for? Go to a Bike store and get “Fitted” for an Mtn bike. Once that you know of the size, go out and test ride bikes of interest to you. Suggestions of Craigslist, Ebay, used Bike searches. My other note, Ride Wise = Wear a Helmet!

[Okrad]

Merl—Did they also say you had pd, too? THat was the most inuhmane thing a dr every did to me. They told me I had autism and had two dxs of it, then they said no, you are just PD go do DBT! I had a chrmosomal abnormality, too, but that was not enough. No, it had to be PD. Sure wish there was a hell for that dr to go to.

Oh! As to the gym! WOw, I would never ever tell or expect anyone to go overboard. I just find that I have a horrific amount of anxiety that cannot be quelled. It is almost like akathesia . I cannot stop moving. It’;s just how I learned to not be medicated out of my mind,

Yeah, people think I am nuts, but that is OK. I don’t want to be on stuff like Haldol and if all ky life is “wasted” in the gym, so be it. It’s a nice gym and they are nice to me there even if I am crying in public.

[Merl]

Hey Okrad,
OK so here’s a bit of my theory when it comes to the medical profession. Some may think my opinion is wrong, rude, arrogant and uninformed but it has been my own experience with these so called professionals which has lead me to this judgement. As I’ve said previously I was involved in a MVA (Motor Vehicle Accident) at a very young age. Back then there were no brain scans available, xray was about it. But my skull was still intact so xray did not show anything. Now to say I was a ‘S#%T of a Kid’ would be an understatement, if there was a right way and a wrong way to do things, I always did it the wrong way. I got myself in LOTS of trouble and not only parental but also criminal. For many years I knew something just wasn’t right with me. I went to see dr’s, they couldn’t find anything and after repeated dr visits with no answers I was labelled a hypochondriac. “There’s nothing wrong, it’s all in your head…” at the time little did I know just how true that statement was. I was sent to see head shinks of every colour and creed. My upbringing was very religious(catholic), which didn’t help at all. So I was just a ‘sinner’. With each medical professional I saw I was given another label but the general consensus was “He’s crazy in da coconut”.
It wasn’t until some 20 odd years later that a cause was established and it turned out that all of their labels were WRONG. The medical profession would not accept what I was telling them until they could do a test and prove that there was actually an issue and although it was ‘all in my head’ it was not all psychological. I freely admit that my psych was affected but there was a physical cause and not solely a mental health issue. Many(most) dr’s like to go for the easiest/most simple dx and if they do not have the answers or can not find a cause, then the easiest answer is to blame the patient. They even locked me up in a psych ward, “cos you must be crazy to be in that much pain when there’s nothing we can find wrong…” So, now, I’m not as accepting of their opinions and I query them. They do not like that. “We are the dr’s, we are the professionals. You, well, you are just the patient. We have done many years of study, so we know…” But often they don’t know and they will not admit to this fact. We seem to put all our faith in them to have ALL the answers, then when someone like me won’t accept their guesses I again get labelled as a “Non compliant patient” and I agree I am non compliant, I won’t simply accept. They believe this is because I’m simply an arrogant sod, but my arrogance with them has been a learnt behaviour, taught to me by the dr’s themselves. Arrogance and ignorance don’t mix, but I have found that many in the medical profession have an overdose of both.
For 20 years I have worked in the disability sector, teaching people with all sorts of disabilities how to live independently. Most of the clients have a diagnosis of some sort. Due to the diagnosis often it becomes the default. No matter the illness/symptoms the original diagnosis is used as the cause, without any investigations taking place. As a worker I have taken many a dr to task, on behalf of my clients, to get them to investigate properly. They have a duty of care to their patients (as did I) in my view their arrogant attitude breached this duty of care. As a patient I cannot say that, but as a worker I can. If I accepted their diagnosis for a client, when I knew it to be false, I’d be in breach of my own Duty of Care.
I hade a client who had alcoholic dementia. With dementia the mind breaks down then the body, with alcoholic dementia it works the other way around, the body then the mind. One night this man was in pain. A dr was called, the dr knew my client and simply said his pain was alcohol induced without even seeing the client. I disagreed. The clients pain increased severely, he was in agony and an ambulance was called. It turned out that the client had a serious dental infection and he was hospitalised and treated with high dose antibiotics before having teeth removed. I was informed by the hospital that he infection was so bad that septicaemia had set in. If I had ignored the client and simply accepted the dr’s opinion I would have breached my duty of care.
Now these are 2 examples of dr’s giving their own personal opinions and they are only simply that “opinions”. Autism and Asperger Syndrome , unfortunately, have become all to common as a default diagnosis, like “we don’t really know, so we’ll just say aspergers” and the same with psych disorders. So if you disagree, imo, you query, you ask questions. The dr’s WILL NOT like it, I can tell you that for sure. But if you disagree with them, but simply accept, you are not doing yourself any favours.
As for the gym, I simply wanted to give another view. I fully understand that this has worked well for you but on the opposing side, it certainly ain’t good for me. I believe that for others viewing these posts it is helpful to have two opposing views. Physical exertion is obviously of benefit for you and may well be for others, but to also show that we need to understand each individuals limitations.
Merl

[Okrad]

Merl, you are mighty cool and I like you! I could not have agreed more with what you just wrote. Do you know how many dxes I have? I have a Chromosomal Abnormality which leads to Sensory Processing Disorder, but those were not enough. They totally ignored those which are based on science and genetically provable. No, in one year I got PTSD, OCD, GAD, PD, Autism, Autism-like syndrome, Medical Anxiety Disorder (does that even exist?) mTBI , PCS, and a host of personality disorders because they gave up when the only REAL dxes were Chromosomal Abnormality which leads to Sensory Processing Disorder and the mTBI and PCS. All the other ones with psych? Laughable! Every new Dr gave me a new Dx! They just made sh*t up until I tried to end my life I was so confused. I kept thinking how F-ed up can one person be ?

I hate them now and I am a meek person. I was also brought up pretty religious and never did anything wrong out of fear. I lived in fear and live in fear. I never drank, smoked, was boring as a person can be and still was all screwed up because of the genetic thing.

But I never turned around. I have that for life and still they keep telling me I am mental. It makes me very sad. But you put a smile on my face especially about how you helped that man not die! He would have died, you know!!

[Karl_M]

Okrad, One suggestion and that is to seek out another medical Doctor that works best with you Life Changes and if they do not work best with you, seek another. I had to go through two Doctors as my first was not open to any type of Alternative types of procedures.Some Doctors are by the and some are a wee bit more open minded. Being an Alternative type of person this is something that I am already use to doing, Seeking and repeat, Seek and repeat. When I would get tears starting to peculate I would try to Yawn really hard to offset to feeling that might bring me to tears. Most times this works for me and I have had only a few moments of this happening.

Keep on working out and DRINK PLENTY OF WATER, at east 32 oz a day which is a good for brain health as well!

[Merl]

Okrad, I believe that once we get to the point of acceptance life becomes easier. Acceptance that the dr’s are not ‘gods’ and do not have all the answers, no matter how much they try to convince us otherwise. They simple give an opinion. Like you, if I accepted every medical opinion I have been given I’d have the entire alphabet in acronyms. I have learnt that this is my ‘load’ and I have to manage it for me, not them. They have given me all sorts of medication, potions and lotions, hell, I’d rattle when I walk with all the tablets I was given. And the side effects were simply AWFUL. I was taking medications to deal with the side effects of other medication, no wonder I was a mess. Once I had exhausted the management options I could and followed through with their plans, without any great results, I learnt to accept that they do not know it all. If I had taken all of their opinions/diagnosis/guesses to heart I’d still be locked up in the psych ward. I won’t say I was a meek person, but I was always brought up to accept the professionals advise, but when each contradicts the other, confusion ruled. Medical Anxiety Disorder? NO BLOODY WONDER and again that diagnosis takes all responsibility away from them and lands it back on the patient. “Don’t blame us, its all about YOU!!!” So now I have learnt to manage all this for ME, not them.
I know, for me, if I crawl inside my own head I can go around and around and wind myself into such a mess and what for?? So although I don’t accept that this is as good as things are going to get, and I do still push my limits at times. I do accept that the dr’s don’t have anymore answers then me. So again, I manage all this for ME, not them.
Merl

[Okrad]

I am very grateful for what you wrote because I have been feeling very low. I was bawling my eyes out at the gym and I just said screw it and let it happen. No one seemed to be offended, so it was ok. I was in the corner.

I am very distressed by all they say. I hit myself in the head very hard and got dizzy which was not smart because I already have a tbi. I was dizzy for days. I am still dizzy. I hit it very hard. I must be the stupidest person with a TBI to make it worse.

I have a genetic trouble they keep ignoring to call me mental. Here is a good video a friend sent me:

It is all about how it’s about power. I am already so beat down and ruined. I can harldy talk in public and cannot look people int he eyes anymore. I will try to take your words to heart. I just wish I had a "me " left to even defned.

[Merl]

I can empathize with you being very distressed by all they say, especially when you get mixed messages. This is partially why I gave up getting answers from the dr’s. Now, I try to focus on one thing, me, and not everybody else’s opinions. Frustration is ever present and due to this I try to vary my day, to take that power back. I can easily push myself to try and over come that frustration and ignore my body, but I pay for it the following day, then get frustrated that I pushed myself to much. AARRRGGG. For me its about balance and that’s difficult to quantify. One day I can have a high limit, the next day it can be low. I need to watch for the signs and not ignore them, not push on through. I can push and push hard, but the result simply isn’t worth it. Now I say ‘simply’ but it took my wife to point it out to me. It was like I was burning the candle at both ends then wondering why I got burnt. Silly really.
You say "I just wish I had a “me " left to even defned.”(defend). Personally I had to hit what I refer to “Rock Bottom” to then accept that I can push as hard as I may and still fail. This wasn’t that I didn’t have the will to push myself, I just simply no longer had the ability I used to have. And that was VERY hard to come to terms with. The ‘me’ I knew was gone, so now I have to hit reset and work within my new limits and not push. And that is NOT easy. I can be my own worst critic, I DO NOT NEED A DAMN DR ADDING TO THIS. I need to deal with my limits, not dr’s theories. Their text books work on a A+B=C theory, I’m not A nor B nor C, so I don’t fit and due to this they tend to point the problem out to be ME. I feel a massive load of guilt already and they feel it’s ok to add to this. It ain’t OK. Again, as I’ve said before “I ain’t here by any choice of my own” so why do they make out we have a choice?
Again "DAMN DR"S!!!"
So now, I manage this for me, not them.
Merl