Not all Disabilities are Visible
When people meet Daniel there is always a common response, "Wow, I could never tell you had such a severe injury. You must have gotten lucky." The problem is, most people think a disability is something you can see. It is often forgotten that the impact of an injury to the brain is easily hidden to the occasional viewer. While Daniel prefers short hair and his scar is in clear view, most will not experience the long term effects from this injury. Many of the long term side effects only Daniel's family notice, especially his wife. One thing he did learn was how to "hide" or "mask" the problems and avoid situations that bring them forward as much as possible.
|Side Effect||Description and Impact|
|Inability To Sleep on Schedule||This one is self explanatory. While Daniel is on medications to help him sleep, they do not always work and his ability to sleep on a schedule is almost impossible.|
|Day Time Instant Fatigue #1||The first type of fatigue that Daniel suffers from is sleepy fatigue. When Daniel awakes and proceeds with his daily activities, he slowly gets a "need to rest" feeling. The speed to get to this feeling is directly related to the intensity of what he is doing during the day. For example, the more intense in thinking: tax paperwork, writing this website, attempting internet based classes to relearn what he used to know, the quicker Daniel gets to this feeling. Daniel will reach this feeling of fatigue in 2 - 5 hours, depending on the intensity of his activities during the day. Daniel learned that ignoring the "need to rest" is a bad idea, on the day he woke up in his garage while working on his vehicle.This type fatigue is best fixed with a 1 - 2 hour nap without an alarm. Daniel has found that his body needs to wake up naturally otherwise the next length to this feeling will decrease. Until November 2013, Daniel was accepting this side effect, but it kept getting worse as he attempted to pursue more daily activities. Daniel was also upset from loosing the ability to enjoy a nice sunny day. So, Daniel talked with his doctor and he was prescribed Nu-vigil. When Daniel takes this pill, he is able to stay awake during the day and is able to attempt to sleep during the evening. The pill however only addresses this fatigue.|
|Day Time Instant Fatigue #2||The second type of fatigue that Daniel suffers from is mental fatigue. This particular fatigue is one of the most upsetting. While Nu-vigil keeps Daniel awake, it does not help with this type of fatigue. The simplest way to explain this, is when Daniel first wakes up, he can do math, he can do his tax forms, and banking. But after some time, usually an hour, his abilities start to fade, eventually reaching a point where he mentally cannot do 2+2. This type of fatigue impacts anything that requires thinking; although, he is still able to do routine tasks like making a sandwich. It also cause situations of confusion for Daniel.While Nu-vigil doesn't help with the mental fatigue, Daniel has accepted that fact. He is fine with this simply because while he is awake he can still enjoy the simple things in life. The other nice aspect is while he is awake, when this starts, if Daniel stops the "thinking" based aspect and retires to something simple like looking out his window for a few hours, he can be restored to an almost "wake up" ability for another round. A full recovery of both fatigues has always been a full night's sleep. Naps only gave temporary relief.|
|Weather Change Impact||When the weather takes a turn from high temperature to low or low to high, think season changes, Daniel will have anywhere from one day to a week where he is unable to do almost anything. Light and noise increase this side effect's problem by putting him into more extreme pain. The resulting pain is not a headache, but a feeling of pure pressure all around, along with a feeling that the right side of his face is no longer under his control.
The "fix" for this is non-existent. Initially there were adjustments to Daniel's shunt. Since the last adjustment, Daniel still experiences this side effect. However, the impact has been reduced to a two day length, maximum. Only time will tell if it stays this way. To Daniel, if that is how it is, he will accept it. To him, it is better than before, and there is always a point where you just have to accept and move on. Two days in a dark room or in a controlled environment is he is fine with him.
|Pressure in Head by Activity||There is not much to say here. Simply put, if Daniel does almost anything where his head goes below his waist, he will feel pressure in his head. The longer he exposes himself to that aspect, the longer and more severe the impact will be. Changing a wall outlet landed Daniel on the couch for two days. All the pain killers Daniel has tried to fix this side effect, have had no impact.|
|Word Finding Issues||When Daniel is talking about something he has routinely responded to, you will never notice this issue. For example, when people ask Daniel how this injury has impacted him, he has a routine response. Only when you ask Daniel about something that requires a non routine statement will you notice the pauses. In some cases he will say a word, then retract it, and then try to talk out the meaning of the word he needs hoping that you will give him the assistance to retrieve the word. Many times he has made a statement where the choice of words actually gave the wrong meaning of a statement.|
|Deafness In Right Ear With Constant Ring||From this accident, Daniel lost all hearing in his right ear. If the loss of hearing wasn't bad enough, he also has a constant ring in the right "ear" called tinnitus. Daniel has seen multiple ear specialists and the only possible option, which has a lottery winning chance of working, carries side effects that could cost Daniel his few remaining enjoyments like biking and riding his motorocycle.
Due to the ring and deafness, when Daniel is anywhere where there is more than two different noises or more, so more than two people talking for example, he is unable to fully understand the person he might be talking to. At restaurants, Daniel has a hard time talking with his wife across the table. One solution to help is to text or write down the communication, but this is very impractical.
Daniel has attempted to get Workers Compensation to cover a tutor for sign language to teach him and his wife. Daniel even got a doctor's letter of medical necessity. However, Workers Compensation denied this request and sent Daniel to another doctor for a "second opinion". This doctor went as far as saying to Daniel, that he should not even have cross over hearing aids as they only remind him of the issue and he should just learn to ignore and live with the problem. To Daniel this felt similar to an eye doctor saying, "You don't need glasses it only reminds you your vision is bad. Just learn to live with blur".
|New Learning||When Daniel is relearning what he knew before, it eventually will stick. New learning is more difficult and sometimes impossible. The way this learning issue was described to Daniel, was that when he is relearning information he is "reconnecting" to what he knew, but with new learning he has to create the new memory for it. While Daniel can learn new items, it takes an incredible amount of time and repetition. If he stops using either old or new items for too long, about a month seems to be the standard right now, he has to reference back and relearn again. Daniel keeps Post-it Notes in business, thanks to this. One thing Daniel started doing to mediate this side effect, is daily reciting of things he doesn't want to loose again because the re-learning the first and second time were very taxing to him.|
|Remembering Your Name||People often get annoyed when Daniel doesn't remember people's names.
Daniel's response to this issue is, "Have I said it over a thousand times? If so, have I said it in the last four weeks? No? Sorry, I will not remember it. I will however probably remember your jewelry or other items like the color of your hair or shirt."
The interesting phenomenon about this is that before the injury Daniel was always very good at remembering visual items, sometimes to the level of the remembering the design of a button. While this ability is not the same or as good as before, Daniel has luckily retained some of it in an "in and out" aspect. Meaning, he can remember these details but not consistently. Also the retention of this information is subjective, some details stick longer than others.
|Pain||If Daniel pushes his limits of what he carries or does in a physical nature, he will be laying down to recover because of the pain. He has a cane for days where, for whatever reason, his balance or right leg is bothering him. Generally, he will bring it along when walking in the mall or where he expects longer walking. Daniel got a cane that breaks apart and fits into the cargo pockets of some of his pants.|
|Lost Time||There are moments were Daniel has found himself somewhere and does not know how he got there.
One notable instance, was in Spring of 2013, when Daniel suddenly noticed he was near Morristown on Route 287 after he had left Paramus to go home. Daniel not only missed his exit, but went many miles further. When he noticed he was by Morristown, he realized his last memory was that he was just in Paramus getting on Route 208.
These instances are few, but have happened and been reported to his doctors. The doctors are looking to see what is the cause and if it is fixable. Since the Morristown incident, Daniel routinely reads all road signs as he is driving or the plates of the car in front of him. The thought is, if the cause was "zoning out", this will keep his mind more active and prevent it from happening. There have been other instances where he has lost segments or even the whole day.
UPDATE 5/12/2014 - It is believed now that this is caused by Complex Partial Seizures. I am now back on seizure medication as a precaution and probably life long aspect since I am at risk anyway.
UPDATE 12/15/2014 - Medication set, also a medication that helps with the sleep issues time to time.