Howdy Hydrocephalus

Understanding my unique gyroscope

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Recovery vs Rehabilitation

It has taken a while for me to understand that I am both recovering and rehabilitating from this brain injury at the same time. I remember thinking that the neurosurgeon was full of shit when I went for my appointment at the hydrocephalus clinic and he said that I was recoverying well and was pleased, while I was unable to express how different I felt. Of course the neurosurgeon was pleased! The surgery went well with no glitches (I think – I was knocked out so who knows) and the hole only tried to close once but re-opened. I was walking better; not going to the bathroom every five minutes; the CSF fluid was now flowing and not backing up so the surgery was a success and I was recovering in his eyes. Meanwhile, I was physically moving better than before, but couldn’t understand why at the three month mark I was not back to my normal self and felt like I had been put on permanent spin dry.

I continue to hope that the functions from the damaged areas of my brain recover. This will occur over a long…long…long time because the good areas of the brain will take over those damaged functions. The good neurons will reconnect pathways and the fuctions will start again. How do you train the brain to reconnect new pathways? By using rehabilitation.

So What is rehabilitation? While my inpatient rehabilitation was a bunch of testing to find out areas of improvement and strengths, it was also a place for me to learn strategies to work around those areas that are being quirky. When I began outpatient speech, my therapist gave me the best advice…That life is your best form of rehabilitation and that everyday I will be finding out what works for me. So at the moment daily life is my continuous rehabilitation. Rehabilitation is basically new ways of working around my quirky bits to minimise the longterm impact of my brain injury.

I have to limit my visual stimulation for my right eye. This includes reading, writing, computer and photography. I had continuous 24hr head pain – both nerve and migraine-like that wiped me out and made me feel nauseaus. I have had major fluctuations with energy and fatigue so I couldn’t figure out what to do until the local library offered a learning to knit session. So I went! After taxing day of speech, taking the bus, picking up Wy from School and walking to the YMCA for a loud kids session; I came home and crashed for only an hour. I was feeling very fatigued but still went.

I met a dear friend there and we ventured in together. I sat there not understanding what the wonderful lady was saying. I tried to figure out what to do. Number 1: I am left handed and she was only teaching right handed. Number 2: The instructor was going to fast for me. Even when she showed me in person – I just didn`t get it! I broke and cried. Which I found embarrassing because it really wasn`t a crying thing. I am not a cry-e type person.

Another lady showed me by grabbing my hands and physically showing the motion. I had the ahah – moment and learned to cast on. I then learned the knit stitch. I had this intense look on my face with my tongue slightly out of my mouth when this lady walked by and said `I can see the neurons in your head working hard` I looked up and think I laughed and said `that is why I am here; to get my neurons working`. I borrowed the needles that night so I could try at home.

I rarely used UTube for anything except posting the odd family video privately or watching cheesy or funny videos. I have discovered that I love UTube and how much it can help me learn. I have a hard time understanding different types of writing at the moment. My brain doesn`t necessarily connect with the understanding part of reading. But I discovered that I can learn from looking and having someone show me how to do things. I watched a casting on UTube video something like 20 times and finally was able to cast on. The next day, I watched a knit stich video over and over again and I learned how to knit.

I ended up knitting for two weeks and made a dish cloth. It took a bit because I can only knit a couple of rows before my arm would burn badly and my eyes hurt. But I did it! I must say there are so many benefits to learning something new! I also now understand why the one lady on the videos did say that knitting was medatative. I feel good knitting. I am doing something with both my hands. I hold a modified way that works for me! I feel my arm getting stronger and stronger; the coordination gettting a bit better as I get faster. I feel my neurons firing and making new neural pathways. My brain recovering and becoming stronger.

My modified Knitting with the right needle propped up on stomach or with my feet

My modified Knitting with the right needle propped up on stomach or with my feet

I modified how I held the needles for my crazy right hand

I modified how I held the needles for my crazy right hand




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Land of the Misfit Toys

I found this from the last days of being in Unit 58 & thought I would post.

I think Land of the Misfit Toys is from Ruldolph the Red Nose Reindeer. I jokingly thought this as I went into Unit 58’s dining room this morning as another guest waved for me to sit down by him. I wander around the room trying to find a chair to drag over for breakfast. Holy cow – lots of mobile people in here now. You know you have been on the unit for a while when you have your “dining room gang” I don’t hang with the overly chatty crew but instead we have some conversation and understand each other’s uniqueness’, as well as, feel comfortable eating in silence because “I UNDERSTAND”. I know what people mean when they say “they have been here for five & hold up five fingers instead of saying it). I understand when we talk about our kids. I understand when someone says “it is a good dinner” & know they meant to say breakfast. I understand the effort to control a body part to put food in a mouth. I understand the effort to speak more than one word answers. I understand when you eat and leave without saying anything you are not being rude (plenty of other things going on in our heads & I do the same thing). I can understand when you speak, even though others may not & remind you where you are when you are confused. I now feel at home with this gang and can laugh at myself more

This week I have been enlightened to see challenges overcome by other people on the Unit, as well as, overcoming my own challenges. I am learning to be patient. I know not to push the driving thing now and wait until my visual stuff calms down or goes away.

Then I went home a week or a few days later – I forget. I missed the safety of the Land of the Misfit Toys when I got home. There was so much going on & a lot to process visually & cognitively; there was no routine; no working on me time – it was full on kids and family first. My meds were not working so I was contingually in pain – 24 hour headaches (doc says like migraines) & 24 hour burning/fire ants crawling on my right side.

I know I found it strange for me to be missing the safety of the Land of the Misfit Toys, but there is this grand allure of being in a controlled environment. Yes in this controlled environment we were all impacted by either spine, brain or stroke, but not so much that we should always live in isolation such as the land of the misfit toys, but are instead taught the skills and strategies to venture and make a new life for ourselves. Transition has had its ups and downs and thankfully more ups for me. I am more cognitively aware now (my mass amount of medicine working out? healing brain?). I know that inclusion and acceptance happens easily for me because I look the same. I only hope that it happens easily for everyone else who has left from the unit as well.

I know that most people look at me and I look normal – no I am not drooling at the mouth – the injury is on the inside of my head – duh! My physical stuff is minor and I work hard to keep rightside working. If you look hard I may not swing my right arm as much as my left and my right side has more dropsie moments than the left. My right foot may slightly walk different when I am tired. My right side tires out more easily and the coordination is not always there than the left. It is harder to see the differences, as I am left-handed. My speech has good days and bad days! My internal brain stuff is a little quirky. I am still learning weird stuff about myself everyday. I know that I have word and spelling issues more than before – For examply, I didn’t know how to spell drowsy and lots of other words. I now ask for the spelling or look them up. I am slower at the math stuff too, but thank goodness I have a little guy in grade one…we get to practise together! And I still can’t count backwards from 100 by 7 but I have memorized the first two 93 & 86 (had to use my fingers on the second number). The biggest thing is how fatigued I am. I hope to have the same energy as what I had before all this went down, but that may take a long time but I hope to get back to the same energy levels. I am a two time a day napper these days.

I remember that I used to pity or feel sad about the Land of Misfit Toys when I originally watched Rudloph the Reindeer, but now I have a who different perspective. The Land of the Misfit Toys serves a purpose if there is growth, renewal, skill building and hope. Hope to be accepted and included when they take the courageous steps to forge their new lives outside their little island.