[WobblyOne]

Hi. I’ve been lurking for a few months, soaking up the info. I thought I would introduce myself and tell my story…
I’m a male in my mid-50s, 6 ft X 180 lbs.
Last September I suffered an mTBI when a shelf collapsed and I was struck by a gallon of paint from a height of about 8 feet (2 feet above my head). I had two contusions—one from the paint and the other when my head hit the ground. I had an estimated LOC of 30 minutes and anterograde amnesia for 3 days. The initial MRI in the Emergency Room was negative.
A complicating factor is that I have mild spastic Cerebral Palsy (left hemi). To this point it has not been life-limiting at all. In addition to a mild “limp”, I have amblyopia (no binocular vision), mild lordosis, scoliosis and lumbar/sacral DDD. Like most with spastic CP I have a strong gag reflex and other pronounced primitive reflexes. Periodically, I use an ankle-foot orthotic (AFO) to help with some gait-related pain. I do experience some synesthesia—“hearing” flashing lights and “seeing” certain sounds.
MRIs and other imaging show that the right hemisphere of almost all brain structure is under-developed, demonstrating some sort of prenatal developmental problem.
In the immediate aftermath of my injury I experienced pretty strong emotional lability. Rage/anger was only an issue for a day or two. However, I could be brought to tears by the most innocuous events and am still struggling with this. It’s incredibly embarrassing to be leading a meeting at work only to start bawling when someone announces their retirement. I have no control over these episodes and can’t tell how long they will last or how strong they may be—sometimes it’s just a crack in the voice and a tear or two. Other times it’s a blubbering breakdown.
Within a couple weeks post-accident I lost the ability to urinate on my own. This doesn’t happen every time I have to go, but I can count on it at least once a day. Sometimes I just can’t get things flowing. Other times I shut down mid-stream. It’s called “neurogenic bladder” and, most likely, it was caused by trauma to the sacral section of the spinal cord. A few times since my injury I have spontaneously urinated without the ability to stop the flow. It’s only been a couple ounces, but certainly enough to have an embarrassing wet spot on the front of my dress pants.
I’ve come to terms with this problem and it’s only a minor inconvenience now. I catheterize myself a couple times a day and it’s just become part of my routine.
I’ve been to the ER six times since the accident with uncontrollable nausea and vomiting. Of those six, I was admitted three times. The dx is always “probable damage to the pneumogastric nerve subsequent to concussion”. Treatment is intensive rehydration with Zofran/Phenergan/Reglan in an IV rotation.
My chief complaint is memory loss that doesn’t appear to be getting better. I have no problem recalling events prior to the accident. The biggest issue is moving memories in the immediate past (last few seconds to last few minutes) to something more permanent. For example, if I’m working on a toy and I need a Phillips screwdriver, by the time I reach the toolbox I often have no idea what kind of tool I’m looking for. When things are particularly bad I won’t even know why I have the toolbox in the first place.
Names are also very trying for me, and it doesn’t seem to matter if I’ve known the individual for 15 minutes or 15 years. Strangely enough, I can figure out the names of my coworkers by associating their face with the location of their office. For example, “Joe” starts a conversation with me and I can’t recall his name, I will start with my own office and work my way around the building, naming each office occupant, until I reach their office. Since I’ve associated a face with a specific office space I can recall their name. It takes a while, sometimes, but it’s better than not remembering at all.
Cognitively, as long as I am not under stress, I can think. Any pressure—at all—and I lose the ability of logic and reason. The greater the pressure the worse my performance.
More often than not, when I try to explain my issues to friends and family I’m interrupted with a pat response that they, too, are “bad with names”, etc., and we’re all just getting older <chuckle>.
1) No, it’s not the same. Maybe you and I are both “bad with names”, but I’ll bet you can still take a **** when you want/need to.
2) Maybe we are getting older, but I did not suddenly get older one sunny September afternoon after a gallon of Glidden whacked my brain pan.
3) “<chuckle>”. WTF? Not being able to remember my kids’ names is somehow funny?
4) Yep, sometimes not being able to remember where you put the car keys ranks right up there with not being able to remember how to get home from work.
So, I’m looking for ideas: either to cope with this nonsense or to resolve it…

[EsthersDoll]

Hi WobblyOne,


I'm so sorry to hear about your troubles!

Since you already have some neurological issues, your situation seems a lot more complex than many of ours who are "just" trying to recover from a single or a few blows to our heads.

I can tell you that people have said to me, I just turned 35 about three weeks ago, that they also have memory issues. Usually people who tell me this are in their 60's. No, it's definitely not the same! But, really, they do NOT understand that their doing this is robbing you of your right to grieve and completely discounting your loss. They really only have the best of intentions and want to make you feel better by telling you that you're still a part of the herd, you're normal and not to worry about the "little" impairments. The reality is that the impairments you are experiencing are quite frustrating and that you perceive a huge loss and difference that you are struggling with. I'm sorry. When this happens, just try to remember that they are doing the best they can. They can't see, know or understand what you're going through, but they still care about you.

I'm lucky that I have a few people in my life that understands what a challenge my own recovery has been for me and how profound the loss feels. One of whom is my therapist. I didn't have a therapist before the accident I was in that caused the injury I'm recovering from - but I can tell you that having one to help me deal with the challenges and changes that I face has been integral with my emotional coping process. Maybe you could consider seeing a therapist too? One who specializes in mTBI, or serious health issues?

As far as the intermittent incontinence is concerned, I had issues with such things for a short while too. Luckily, it went away. Maybe considering wearing something like Depends would be easier and more comfortable than using a catheter?

Since you've been lurking, I'm sure you already know about the healthy way many of us live, by eating well and taking supplements - so I won't say anything about that. But let us know if you want some advice in that area and many of us (I'm sure) will offer up our opinions on the matter.

When you talk about trying to remember the screwdriver you need and then forget - something that has helped me in similar situations is that I start saying to myself, either in my head, or with a whisper or low volume speech, what it is I need until I reach the area that the thing is located in. ie: "screwdriver, screwdriver, screwdriver, etc" until I reach the toolbox. Once I reach the toolbox, I'll think, gosh what am I here for? But I just said "screwdriver" to myself seconds before so it's easier for me to remember. I use this trick at home and at work and it's helped me a great deal.

I also think I should be carrying around a small pad of paper to help myself, but I haven't started doing that yet. They sell little pads, that are pocket-sized with a pen or small pencil included, like this: http://www.amazon.com/Blank-Aluminum...196529&sr=8-13
These small aluminum cases are usually sold in drug stores and the pens and pads are refillable.

Or, maybe a smart phone can help you in this instance?
I keep lots of "notes" written in my smart phone on its "notepad" to help me remember what kinds of things I need to buy at the store. But someone could easily have a page dedicated to short term memory.

Lastly, I should mention that memory is an interesting thing in terms of the brain. My mother is recovering from encephalitis. She has retrograde and anterograde memory problems. She is literally unable to record new memories at all. When she was first released from the hospital, she could not remember from one minute to the next. It's been more than 2.5 years and now she can remember for upwards of 2 hours on "good days". Her neurologist believes that within another year or two, she will be almost back to normal.

The hippocampus has a lot to do with memory - it's the only part of the brain that produces new neurons. There might be a lot of hope to be had in the area of memory recovery. I've done a lot of research about memory recovery, because of my mom, and I did it before sustaining a brain injury myself... and from what I've read, no amount of therapy can help improve a person's memory.

But my own memory has improved a great deal in the last 22 months when it was damaged in an auto accident. It's spontaneously gotten better and I expect it to continue to do so. But, I don't think there's any real way to know one way or the other whether a person's memory will improve after any brain trauma or neurological issue, especially when considering that the natural aging process is probably not helping the situation.

I hate to tell people to "be patient" because I hate it when people say that to me. But, perhaps, whether you can be patient or not, some of the impairments you have to deal with now will get better over time. Until then, may your path be as smooth as possible.

[WobblyOne]

EsthersDoll,

Thanks for your reply. Some good, practical advice.

I'm not sure what you meant by "right to grieve", but yes do feel like some do discount what I'm trying to tell them.

I have tried your technique of repeating the name of the object or idea I'm trying to remember--and that is very effective as long as I realize it's something I NEED to remember (e.g., "screwdriver"). If it's just a thought in the stream of consciousness, forget it.

Silly as this may sound, if you are going to use a notepad or cell phone as a memory tool, you need to:

1) Remember to write or record the thought. Doesn't do any good to have the tool if you don't remember to use it.
2) Remember to keep the tool with you. Yesterday I put have a dozen items needing attention today on the notepad of my smartphone. Today I'm at work and the smartphone is twenty miles away on the dining room table.

My injury was not job related and I am attempting to continue to work. The job itself requires above-average memory capacity. I would like to contact certain list members "offline" if that's ok. I have some work-related issues I would like to discuss with folks who have been there, done that, and have the t-shirt to prove it. I'm not comfortable, though, talking about such things in detail in a public forum.

Thanks to all for listening!

[Mark in Idaho]

Wobbly,

Welcome to NeuroTalk. It sounds like you have some of the same struggles as many others here. I had to put a lanyard on my cell phone and hang it around my neck. Unfortunately, not many cell phones has an attachment point.

I have the same problem of forgetting to write something down. I have not found a solution except using a white board, at home.

If you have set your profile to accept PM's then you can use that system once you have posted enough times to get off visitor status.

Anything else you can tell us in a public forum?

Do you have some hypothetical questions you can ask?

btw, It will help many of us if you use some double space paragraph spacing every 5 or 7 lines. I and others struggle to follow to the start of the next line when the paragraph gets too long.

There are two excellent online resources for you to share with your friends and co-workers. The YouTube video series, "You Look Great" by John Byler discusses how everyone thinks you look like you should be fine even though you have serious memory struggles. It is 6 parts that take about an hour at : http://www.youtube.com/watch?v=x9Xso...ature=youtu.be It is very interesting.

The TBI Survival Guide is also packed with good information. You can print it out. It is 84 pages and is at www.tbiguide.com

This should give you a good start.

My best to you.

[WobblyOne]

Mark,

Thank you for the quick reply. I've printed off yours and EsthersDoll's responses and re-reading them as time allows. I apologize for the run-on paragraph structure. Strangely, the formatting looks ok while I'm entering the text but it's all scrunched up after I submit my reply. I'll try entering an additional Carriage Return.


For example's sake, let's say I was a government worker and that my job required the ability to multitask, "think on my feet", and develop many professional relationships with others at all levels of government. Let's say, too, that this job required me to lead ad hoc meetings with agency heads 3-4 times per week.


In my example, let's say that I leave work on Friday able to do all the above without too much fuss, but I bonk my head on Saturday and when I return to work a week later I can't reliably recall the name of my co-worker in the next office (whom I've known for a decade). Well, we wait a week--or a month--and things will get better, right? What if they don't get better? What if, six months down the road, my concentration, memory, mood are really, really bad by anyone's estimation?


Let's say that, hypothetically, my days are like a bad sit-com and the protagonist's role is a charicature of an over-the-top adult ADD case. He spends his days in frustration trying to convince the rest of the cast that there is something really wrong in his head and he's not making this stuff up. His supporting cast only has two lines--repeated for the duration of the show:


"My memory is bad too. After all, we're not getting any younger, are we?"

and

"Stop whining. I'm tired of hearing about it."


In my example I would have the option of applying for disability retirement from the government. However, this might not be a popular idea on the home front if your kids are still school-age.


In real-life I am scheduled for a lengthy NPA in July. It's my understanding that it should take fifteen hours and is so exhausting that the office will only schedule three hours/day for five days. This takes place over one-and-a-half weeks--every other day. I've had this appointment since March.


I hope this additional info is helpful, Mark, and that you can give me some insight into what to expect. Thanks, again!

[Mark in Idaho]

Wobbly,

I understand the situation you are concerned about. As I stated before, you need to equip yourself with the 2 online resources. If you can just get one co-worker to watch the "You Look Great" YouTube series, it can cause a domino effect of understanding in your office.

Once that happens, hopefully, you can sit down with co-workers and establish what dysfunctions you currently have. Your problems are ADA qualified disabilities. The NPA should be able to verify this.

The most important thing you need to know and express to others is that you have plenty of "over-learned" skills. These are the skills that you have no trouble remembering or doing. They are stored in your memory in so many different places that they are solid memories. If you understand computer hard drives, your over-learned skills are stored in a RAID array of hard drives.

You will likely be able to develop many work-arounds for the tasks that you struggle with.

btw, Tying names to faces is a skill that emanates from a single area of the brain. That area can be damaged without effecting the other areas. I have a similar disability. I have to 'stop and think' just to come up with the names of people in my family. Sometimes, it is like I have to sort through a stack of index cards. That should be your easiest issue to accommodate.

At the ad hoc meetings, you will need a reliable assistant or co-worker to help fill in the blanks or help you stay organized. Your decision making skills are likely still strong.

To give you an example. My son needed surgery to repair his shoulder in an area with extensive nerve fibers that support the whole arm. The surgeon chose another surgeon as his assistant because the second surgeon was fabulous in identifying fine anatomy. The primary surgeon was better with the knife and the 2nd was better at identifying the tissues.

I bet there is someone in your office who can step up and fill this void. Plus, get name tags or name plates to put on the meeting table. In time, you may be able to establish enough criteria to put names to faces or voices or whatever. There is actually an injury where the brain does not recognize the different features of the face. Think of it as dyslexia at reading faces.

A common symptoms of PCS is a loss of the ability to recognize facial expressions and social cues. There are work arounds for this too.

Regarding ad hoc meetings, make extensive general notes in at least two copies. Give a copy to your side-kick. Use a pen or high lighter to cross out issue covered and circle issues of importance. You can develop a visual system of holding these meetings.

You have not mentioned your age but I bet you are in your 40's. This means 2 things. One, your brain is at an age of starting to deteriorate. Two, you are at an age where life experience and other maturity factors can help you overcome most obstacles from number one.

So, your assignment for tonight is to watch the YouTube video. If you can get your family to watch it, you will hear "Ah ha's" as they recognize issues. And print out the TBIguide.

Get everybody on your team. Once they understand, most will become very supportive. The rest are just incorrigible jerks.

My best to you.