Howdy Hydrocephalus

Understanding my unique gyroscope


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Big Steps

The other day I remembered that I should write in my blog. For some reason my reminders have not been showing up. I was inspired and my fingers flew freely, faster than if I concentrated and had to speak. I was super happy with what I written and then of course…I hit the wrong button and all that disappeared in front of me. I was not upset, I know that whatever came through my fingers was gone and I would write something else.

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I finished my testing at BIRS (Brain Injury Re-learning Service) and have been working on improving my squirrelly lack of attention. I have two one hour sessions a week. Most the time I don’t even make it an hour because I am tired and my brain is fried. We are using technqiues from the 80’s…i am assuming their philosophy is if “it ain’t broke don’t fix it”.

I am not giving up on the brain schooling here in the Hat, but I am a little skeptical as I think there are other ways. I still do not like the fact that there is no support group for me or my family. I dislike that they do not have other activities such as social art, fitness etc that other brain agencies have. I looked online and the Powell River society has all that and it is a very small community. I wish they would get with the program and get us brain injured people together rather than isolating us. It is bad enough that i would rather stay in my house all the time unless i have my appointments that wouldn’t provide basic stuff such as a support group. What am I to do go on Twitter or Facebook and say “Med hat brain injured person looking for friends in similar boat”??!!! Okay I actually did that on twitter and was given two names of people and I was in contact with one lady but of course I lost all her information because I have a brain injury and I am beyond disorganized and chaotic.

On another note, chronic pain is a pain in the butt. I never realized how bad my 24/7 headache pain was until it went away. About three weeks after my shots I woke up with energy and no head pain. It was like I could think (manic thinking because I “now could do everything at once”) and I felt that my head was not a lead balloon and weighed 50lbs lighter, I was almost human; more than human a super hero; nothing could stop me now So the Botox was working like a hot damn. How did I know that my new operating system was working at a low pain level was that an hour later I was knocked flat by a migraine combo ice pick headache – wowsers talk about a shock to my new system. I had adapted to my constant pain by breathing, distraction and limited life activites.

I never gave up to finding a solution to my pain. Now don’t get me wrong, I am still not fully out of pain. I frequent headaches, but they are doable. My right side pain is still there too, but the meds are sort of working. I am hoping to change in July to something else that will work with pain, fatigue and other side effects that I do not like. I just wish other people with chronic pain would keep fighting for solutions rather than giving up and making do. Making do just sucks!

I am so amazed at my recovery since September. The speech twice a week; volunteering with kindergarten reading group 30 minutes once a week; volunteering at school when I could with field trips etc… has paid off. I was able to use my speech techniques frequently that I have muscle memoried them in to my body again so my stutter doesn’t show its head until I am very tired or there is way too much stimulation around me. I am able to communicate better. Still don’t really know what to say to people beyond the basic conversation unless around really close friends. I am friendly to people; but still learning the cues to know when to finish a conversation etc…

I am learning to accept that I need lists to make things happen. here is an old list from October 2012. This is now in my crainum and the muscle memory recovery process is almost there. I still have to go through it my head at times. However, I may need the checklist again in September until a new routine has been established again.

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Heres to lesser pain days routine filled days.

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Getting Kids Outta the House

Found unpublished from around October 2012

I received a comment on facebook from a dear friend where she wrote

We take a lot for granted. I recall when we were told to write instructions for a “simple task” and realized there were so many things going on….

It is true.  Here is my list


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Abilities

Found unpublished from December 2012
When I look around, I am very fortunate – I have a few minor glitches to work out.  I am not too certain what but there is a family meeting next week to give everyone the lowdown and plan for my quick entry and quick exit of unit 58.  I am very lucky to be here.  There are so many wonderful people – temporary residents, staff, doctors and therapists.

I had physio today and I thought it wasn’t too hard, but my right leg is throbbing now.  I think it was the extreme effort it was to hop 1m in two jumps on my right leg. I have to remember not to look down when I walk but straight ahead.  And I didn’t have to do anything with my eyes closed!  I met with a person from Occuptational therapy and tomorrow we test.  I did good on my speech tests on remembering  numbers and stories.  I even remembered a phone number when usually I don’t but the first three letters were 279 (I think) and were the beginning of Richmond, BC phone numbers where I grew up so I feel that I had an advantage of using the first three numbers for many years.   She asked me a question if I was wearing glasses…I paused…well I am wearing contacts so yes and no.  I had rec therapy.  My homework is to come up with three things I would like to work one while I am here.

So what is it like here?  Well it is intimidating.

On this unit there are many people fighting back from strokes & brain bleeds.  There are also people that have suffered just dumb luck accidents.  For example, tying shoes at top of stairs falling and breaking neck, but 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 today.  There are people who have been in vehicle accidents.  Guess what the meet the stats – mostly guys!  Then it looks like most the stroke patients are mostly women.  It is crazy.

I think they should bring in new drivers and people who are at risk of stroke to spend an afternoon here.  I wonder if it would make a difference.  I don’t mean to parade around all these wonderful people who trying to overcome their own battles, but maybe it would make a person think about their lifestyle choices.


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In a What?

Found unpublished from December 2012
So basically I go back and forth believing I have right-sided inattention. I guess this is common for most people with inattention, they don’t realize that they have it and think that the Docs and therapists are the crazy people. So basically there is theoretically nothing wrong with my right eye, arm or leg. The brain has become a little haywire and doesn’t always acknowledge that right leg or arm exist. I do not have it severe but I will drop things from my right hand. On my first morning back home for Christmas days off from rehab, I got up to walk to find that my right leg was like a stump. It was not walking normal. I had worked for over one week to get walking back with proper heel toe, heel toe motion and without thinking about it. I forced to walk normally and in return my leg paid me back by giving me a burning sensation. when I first started working my right leg, the calf muscle was in a tight ball for almost a week and my leg had a burning/tingling/crawling/shooting sensations. .