Howdy Hydrocephalus

Understanding my unique gyroscope


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Life on the Unit

The fish tank

The fish tank

I completed a 3.5 hour neurospsych test in a quiet uniterrupted environment on Monday. It took me 24 hours to recover physically and mentally. I can not even begin to explain how exhausted I was. To put it simply it felt like I had run a marathon (not all desk work) and a truck ran me over! The results were to be expected that I do have some difficulties with short term memory, visual processing, thinking processing speed etc….but overall within the normal range for testing. The kicker was that it was stated that testing was done in a quiet environment so that the results so that they do no reflect real world situations and to expect that all hell may fall apart when put back into real world scenarios. That with continued time and therapy, I should be able to learn strategies to adapt. (oh goody! can’t wait) The psych indicated that when I plan to start my masters we may want to test again to determine what accomodations may need to be in place for me prior to starting. Mmmmm not to sure if I want to drop $25,000 when I am not bringing in any income. I was planning on working and completing my masters at the same time to offset cost. (I am not going to think about this at the moment – it hurts my head! I will focus on getting better first)

So what happens when you are guest on the unit. Predictable routine happens. We wake up, get ready, have our medicine and eat breakfast. We get to choose our meals for the next day at breakfast and the fun part is that we may not get or remember what we picked so meals each day can be a surprise. We are all scheduled in to a vareity of groups and therapies with intermingled breaks.

Every day I am scheduled to go to the gym where we are working on getting my right side strength back. I have physio where they work on my right side coordination and getting the head to body part connection quicker. In Speech, I am working on techniques to help with my stutter which includes many steps and coordination. Occupational therapy works on my audio attention, and my being able to take in all the wonderful changing environments and stimulation. It helps with problem solving and gosh knows what else. I also have recreation where I sometimes work on my sorting my photography drive, make cards and some other weird art piece. I also participate in the physical recreation in the gym where if I am concentrating on something my visual inattention is noticeable. I jumped like crazy when I didn’t see a basket ball bounce right near me.

Each session is 30 minutes long. I know it doesn’t sound like much and I even looked at like – Whaaaat are you kidding me, but after 30 minutes of physical or mental I get wiped and have to lie down for a rest and usually get a headache. Yup a rest. I never used to have to do that! I still can not get over the fact that my body and mind still act like they are possessed by some dumb/slow lazy person which was totally opposite of how I acted before. I miss being super quick at talking, thinking, decision making, switching tasks, multitasking, living life etc…. I like how I could only put in minimal effort get my school done with good grades and work done to spend more time playing or creating and being with family. Now it seems that I need to put in great effort to understand what I am reading, coordinating, putting together my thoughts and doing things. I know that I must be patient and that I am only four months into recovery and will see improvement upwards of two years, but I guess I am still missing the old me. I have read that people with a brain injury do go through a grieving process – denial, sadness, anger, acceptance (don’t know the order). I know I am at the acceptance and moving forward phase and it is okay to miss the old me. I am learning news skills for me to adapt and to move forward. Just wish I could learn them quicker so I could gain back some control so I can begin to plot a new direction.

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All I want for christmas

In the dining lounge this morning, there is the television blaring with news of more funerals for the kids and adults who were shot down last week. No one here really has paid attention to what has happened. There have been a few discussions about gun control but most, I think, like myself know that it has happened, but are currently being greedy and focussing on ourselves and on getting better.

Two of my table mates who both have had strokes begin to talk about what they want for christmas from Santa. It is funny because the one person begins by saying “All I want for christmas is my left arm again” The person next to him says the same thing. Both have seen improvement in the arms in a week so they are hoping by Christmas they will have their arms back. This is the place where you can see amazing improvement in people in short amounts of time. It blows my mind! I am in awe of all the people who are re-learning way more than what I have to re-learn. The people in here are the true warriors. They have so many things to re-learn that they use to do unconsciously, but now have to make conscious efforts until they each step becomes unconscious again.

The breakfast conversation made my morning because I was still wiped from three hours of neuro psychological testing yesterday. I slept after the test, got up for dinner, then watched a bit of a movie then slept all night. Today both my eyes are giving me grief – fuzzy vision (not just my right eye); I feel still tired and have a monster of a headache. Moral of the story is that when I think too hard or do too much physical I get slammed preety bad.

At least my CT scan from yesterday showed my ventricles have shrunk back down a bit which is good! That I am just experiencing a bit of chronic pain from my head. I hate the word chronic pain; people think you are a faker when that word is used.

It is awesome that I am learning about what my brain has disconnected for my speech. Apparently, my muscles in my lips need to be re-taught how to work and release. So words that begin with W, F, V, B etc. I have been hitting too hard and my lips get tense so I stutter or hit the letter too hard. I have been learning how to breath the speak and now I am learning how to soften the words. It is amazing to see and hear it work. I know that Wy noticed the way I was saying his name, but not too many other people. It probably always sound like I was angry at him, but now I am working on saying Wy’s name properly! I am learning new stuff everyday. It is just being able to remember and coorinate it all so the techniques will work.

So what do I want for Christmas…is that everyone stay safe and healthy so they do not have to visit this place too!


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One of “Those” People

Okay so what is a family meeting.  It is where Chris is on speaker phone and I am sitting in a room with eight other people.  There are two doctors, a social worker, four therapists, and a coordinator who are all there to talk about me.   I am sitting there listening to each therapist talk about what we are working on, what has been tested and what needs to be worked on.

First, it is physio – my “best” subject.  We are working on my coordination, balance and walk which apprently I have adapted with since last march. I have been working on going up and down stairs with my head up and not holding onto the rails. I have also been using a ball to roll back and forth with my disconnected leg.  The tingling and burning sensations are something to do with the nerves and connection between the brain and the leg.

Second it was OT – my “worst” subject. We have been testing and so far have found out that I have some right side inattention  with some potential visual field loss (yet to be determined). I am highly distractable and have cruddy audio attention but the upside is my visual attention is decent! I like pictures!

Third was Speech – Yup that stutter that I picked up in the summer is here to stay.  Damn pressure on the brain – just hit the part.  I must say it definately comes out when stressed or anxious. We will also be working on organizing thoughts to tell a coherant story when talking.

The doctors are trying to get my meds right – zombie to keyed up does make a body tired.  The plan is if I work hard I will see results upwards to two years.  I will be having a neuropsychological testing done on Monday and from there they will be able to know more specific things.

I am listening to all this and the muscles on my face start to shake and then my hold body shakes. What the hell is going on, I got so stressed. Man my body reacts completely differently now and I have no control of how to stop the shaking. I even shed a few tears. I was releived when it was over so I could process all that information while I walked around before physio.

So it is what it is – Yes I have a brain injury and it is more than what I originally thought (denial or front lobe damage who knows).  I am officially accepting that I am “One of those People”!  No worries though, the upside is that instead of having a mid-life crisis that many people go through at 40; I get to say good bye to the old me and embrace the new me and get to re-invent myself. I am looking forward to figuring out what those adventures are going to be.

Although I miss Chris and the boys quite a lot, I am feeling at home on the unit and know that I am getting the best care here.  Now that I know a baseline, I can work super hard to fill in all the gaps and use the therapies to help get me there. The good thing is, is that the stubborn red headed still exists and I will not give up.

 


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Small Miracles

So what is it like here in Unit 58?  Well the first week was intimidating and somewhat overwhelming.  This unit is a short term rehabilitation floor for stroke patients, spinal cord injuries and brain injuries.

First of all, I really don’t like hospitals – that is where all the sick people are you know!  I knew coming in that I would have to suck it up and get over being in the hospital part.  Second I was told there would be people of all abilities.  I thought I could handle it because I used to to work with people of different abilities but that was a long time ago.

Boy I had to get over my discomfort quickly.  You sit in a communal dining hall with people at various stages of recovery.  There are people who are in wheelchairs who may or may not be getting the use of their  limbs back.  There are people stuggling to eat, eating via a tube. There are people with canes, walkers and mobile like me.  There are so many things that run through your head like “feeling sorry for them, feeling uncomfortable about where to look, what to do, and getting over the feeling of that I was lumped with these people”.  Yup accepting that took a day to get used to it.

So why are other people here.  There are people who have had strokes & brain bleeds.  There are also people that have suffered just dumb luck accidents.  For example, a older man was tying his shoes at top of stairs and then fell and broke his neck. He expresses that “he is lucky not to be a quad”.  I forget the guys name that told me that and would ask him but he was transferred to an extended care place last week.  There are people who have been in vehicle accidents as well.  The youngest person here at the moment is a girl in her early 20’s and she suffered a stroke.

I know when you read all the stats about stroke victims and car accidents and every wonder if they are true. Yup they are.  Most of the younger stroke patients are woman and most of the younger spinal cord patients are guys.

I think we are lucky to have this great facility especially when you see small miricales of watching a person walk for the first time around the unit yesterday and my neighbour walk down the hall to the dining hall today.  I can not even imagine how much happiness they are feeling, but I could see it in my neighbours face.


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This is Your Brain on Video Games (Infographic) : Discovery Channel

The video game thing in rehab is promoted. There is Wii and I have downloaded Luminosity. At first when I played luminosity I was a little shocked to see that I was in the 6th percentile overall when I started on Saturday. I have moved up to the 9th percentile. Whaaaaaat! I know these games would have been super easy for me before. Right now when I read the directions for some of the games, I still don’t understand what they want. I am no longer shocked, but have accepted that however frustrating, this is where I am for the moment.


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Unhinged

I began a little blue pill a little three weeks ago so I could sleep at night.  I began at 1 pill (10mg) and then went up to 2 pills (20mg).  Within the first six days I had some crazy thoughts and weird thoughts.  I had not been depressed up to this point so I just thought it was probably a side effect.  I also know that I began to feel unmotivated and zombie like – just numb. Well then last week I had the emotional roller coaster. The medication was working that I was not waking up for long periods; only up for fleeting moments and the  headaches still happened, but man I was becoming unhinged.  I am not ever usually an emotional mess like this.  Of course I am super anxious.  So my medication has shifted to a yellow and white capsule.  We will if see I don’t feel like a tired unomotivated zombie.  Even with a sleeping pill last night I slept from 1030 to 2 then up and it is now almost 7am.  I would rather feel normal and not sleep than sleep and feel like an out of control zombie. Of course I am stressed…I would like to drive again.  Driving would make my life easier and help me determine if I could be an environmental field person.  I am uncertain if I want to teach again.  I know I successfully did the two hour bugs session three grade one classes.  I also know at near the end I was tired!  There is so much I need to learn to be able to teach again.  I know that my job at the college is not there anymore.  I was only part-time and so there is no going back unless there is another opening.  But who knows maybe I can convince them they need a field trip/lab prep tech or something. Yes…I am anxious; money situation of course, my disability EI ends next week.  I hate not being in control of not knowing a final outcome.  I know everyone says it takes time!  I realize that but sometimes hearing that is not enough.

It was a touch and go situation with letting me go home for the weekend.  Geez…I was taking the shuttle.  I had already been at home prior to being in the unit.  So after being told yes, then being told no, then being told yes, then being told no, then finally yes.  I was relieved because money had already been spent on a ticket.

So my homework to myself this weekend is to not be anxious and relax begin to meditate and  to practice walking with my right foot and repeat heal toe heal toe!  I think I will bring my computer down to speech because I can show how much more easily it is for me to get my point across by typing than writing with pencil.  My god.  I was asked a question and had to write down an answer with a pencil.  Super easy right – ummm…my writing looked worst than wyatts and I wrote a sentence about the same grade level.   Crazy.  I am chalking it all up to bad meds and stress!

When I get home Chris is trying to be nice because he says he likes that I am slower now with walking and talking.  Before I would walk and talk to fast.  I really don’t know how I feel about that.  If ya didn’t like me before with all my high energy and go-go-go why did ya stick around.  Were you waiting for the slow mode to kick in.  Thanks for the compliment – I think?!

Guess who I got the best welcome home reception from – yup you guessed it Echo, the dog!  Ahhh the boys missed me maybe a little.  But I know them, they will glom onto daddy because daddy does all the fun stuff.  I finally did get hug and cuddle from Wy.  D had a meltdown and was sent to his room.  After he came out he fell asleep on my lap.  So it took a bit but mommyy was missed after all.  Today will be a fun day.  We are taking the bus to Ruckers, a very noisy and crazy lights place with video games for a birthday party.  Yay!  I will be bringing ear plugs and sun glasses (if needed) and I really don’t give a shit what people think!

 


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Roller Coaster Ride

Well it has been almost three weeks of me having a bag packed with my clothes & not driving.  Chris phoned the Brain Injury clinic and left a message for the Doc.  He then spoke with the Unit 58 where they told him that “Yes I am always number 1 on the list, but because I have been discharged that I always get bumped because of someone inhouse.  That the person in house is that is moved to the open bed on the unit doesn’t always need the servcices of the unit but just needs a bed.”  Basically – Chris was given the honest truth that there is no hope in hell of getting a bed on  the unit with a possibility but no guarantee of getting a bed at during Christmas.  Chris was pissed with that because why go when all regular staff is on holidays.  I was livid.  My reaction was over the top!  I swore like crazy because I felt that I was lied to, given promises and put on hold for no reason.  Not to worry tho because we had an appointment with a local agency that afternoon.

We go to that appointment and I am blown away about how un professional, uncaring and lack of resouces it has.  I am sure it is great for people who need the basic but my opinion is that there is little they offer for people like me (labelled high functioning).  I asked about what they offer – stuff for memory and distraction & physical.  The rest nothing.  Asked about driving assessment.  She said that if I didn’t have a letter stating not to drive I could & that if we want to pay $300 for a driving assessment we could.  I asked about career stuff.  I told her that I put my Masters degree on hold I told her I am at a loss.  I was on the path of teaching more than one course at the college, did environmental stuff but at this point I have the shittiest short term memory, can’t understand more than one person talking at a time and if I get stressed then my words come out all funny.  I know that I can drive fine, but for short distances and at night I shouldn’t drive.  She told me that I could go to the community employment services for help.  I told her that I went there when I moved here five years ago and that they told me I was overqualified for the services they provide.  I asked if they had anytthing else.  No go to CES.  I am on my last two weeks of EI disability.  I don’t know what I can do for work – I am at a loss.  Yes – perfect job would be right now – no flickering lights, no big windows, no more than 45 minutes computer at one time, no more than one person talking at once,  not too many people, or quiet people, clear directions and time lines, someone to help with the process etc…Yes I know I look “normal” but my brain is still a disfunctional.  She told me I could go get help from welfare.  WTF!  Man talk about robot responses.  Are there no other resources.  Did ya hear a word I said.  Basically they offer some stuff, but the rest I would have to pay for myself.  So this agency offers me three one hour sessions per week for….time.  WTF that’s it – I am feeling like this place is so bottom of the barrel.  Plus they will not take the test that the doc has already done.  They need to re-test me again.  Now I know it…this agency is a justifier for money.

I walked out of there mystified.  Chris shook his head & thought they were unprofessional.  There was some other chick in the room with arms and legs crossed – never introduced – why the hell she was there is a mystery to me.

So we go home.  I am & was an emotional wreck.  I have been one to always be quick to anger but super quick to get over it.  I couldn’t let go.  I had thoughts of what the hell am I to do.  Do I need to fall and wack my head or take a bottle of pills to be put in the hospital.  – Yes I know they were not rational thoughts.  I was not suicidal but I was going over what I would need to do to get admitted to hospital.  Then I was going over in my head  my lost identity when I first had kids – yup my old boss was right the Mommy train puts a halt to any career movement.  And then have lost it again recently when I was just starting to get off the mommy train and see some potential for good career progress.  I was thinking that realistically with no income coming in, I was worth more than alive.  Moneywise it is true.  Being not well is expensive.  We have spent a lot of money with very little return.   No one get your panties in a knot – I am not planning on harming myself in any way.  These are just some of the not so rational thoughts that I had to work through last night.

Needless to say I didn’t sleep well.  I couldn’t let anything go!  I get up this morning and unpack the bag and get the kids ready for school.  I drive the kids to school and on the way home I get a phone call from the Doc saying that they have a bed for me for today.  I told her we will take it, but will not get there until closer to 4 or 5.  I said that I had a meeting yesterday with the local agency and that they do not offer much.  She agreed and I think that is why she may have pushed for a bed. I phone chris and leave lots of messages.  So we will pick up D from preschool at noon and pull Wy from class the same time and hit the road.  Chris says I should have unpacked my bag two weeks ago.  I have no idea what to expect.  I know my expectations are high.  I want to get fixed!  I know that it may never happen and will have to grieve my old self, and learn what my new self has to offer.  I just hope that I can be provided some positive direction.

I am drained, and tired and stunned!  All I can say is get me off this roller coaster – I am not liking the highs and lows.