Howdy Hydrocephalus

Understanding my unique gyroscope


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Creating My Opportunity

I have had my fair share of people questioning me about my ABI. Those people often only see me for a small amount of time. I expend a great deal of energy to act normal. Okay I know that I am not abnormal, but it takes a large amount of effort to have a conversation with people who I really don’t know especially if Chris is not there to let me know that the person does not want to talk anymore. I have come a long way but the cue reading and may not always be there. Some days I just do not have the energy, patience or gumption to even socialize. I often hole myself up at home and socialize online. 

My fingers type way faster than my trying figure out what I want to say outloud. I have spend the last three months coming up with a great business idea that I feel deep down will work awesome for me. I have applied and been accepted into an Entrepreneurial program for disabled people. I am just waiting to see when I start. I have started putting things on the computer, making my website to the point to where I will need help to finish…long way to go yet; and I have used Airtable to make an amazing spreadsheet to help with Market Analysis. I have the brains…okay I am slower at processing, have attention issues and my science side has been disrupted. This does not affect my overall intelligence. In fact, it has really increased my creative side even more than what it was before all this began. 

Lately I have had some brain function increase (okay I forget what I was going to write, but I was so amazed that some science stuff spewed from my mouth effortlessly like it was locked away and a key was finally found). But then as I improve in some areas, others started to crap out again. My short term memory has been giving me more grief. But oh well…with an ABI you body and brain may function awesome for part of the day and then crap out for the rest. It is that ebb and flow of life long recovery the frustrates others around me. I have to laugh at their frustration because they are only annoyed by little things like stuff I have forgotten. I have to live with it all for my entire life. Do you know how hard it is to maintain that smile, be positive and carry on. To take the continual words of “you must of misunderstood” (often that is the case but not always. Maybe You misunderstood me and I actually know what I am talking about) Or that you can not be productive or worthy…that you are a leach or one of those people wasting our taxpayers money. Or that people only see you for the disability and not see your talents.

I openly speak out about my disability now. I advocate for awareness and inclusion. I write about my struggles so that others who read can gain understanding or support that they are also not alone in this. 

Okay I finally remembered about one part I wanted to share…I recently watched the movie Wreck it Ralph with the kids. I wanted to watch it for two reasons. First, I like animations movies and second it has a great analogy of a brain injury.  The locked secret files (where the evil king hid the games memories that he was not really the leader) in the computer game brain are a great visual of how a brain can be after an ABI or TBI. Where information that has been stored in your brain is all of sudden locked away because the neurotransmitters have lost their connection. This connection may re-wire itself with no help; it may re-wire with lots and lots of rehabilitation or it may never re-wire. It means you may have to re-learn the information again or that you just say screw it I will find a new way to do/think/act…it is apart of the new me and you own it. 

Then the Boys and I watched Finding Dory…okay I only saw about half of it but it was the first time I had seen it. Another great ABI, TBI type of movie. I totally understand and love my boys even more because when the first time the boys saw the movie they kept calling me “Dory” in their little boy loving ways. They are perceptive and accurate and just call it like they see it. They saw me pre-surgery, post surgery in neuro ICU…at home struggling until I could get into in patient Unit 58. They saw all the other residents in Unit 58 in all shapes and capacities. They saw me when I couldn’t drive; when I could drive only to the school and back to now where I can drive to Coleman or Calgary. Next will be my trip with them to Vancouver, BC. It may take me three or so days to get there but we will!

So instead of trying to fit in….I am going to stand out. I am making my own legacy. I am going to make my family proud. I am going to make this business work for me and not just work for a business. This business is not just about money. It is about giving back and to hopefully include people who are often excluded in the workforce. I believe I will be able to help make at least one or two people feel that their lives are meaningful again. Maybe even help more. I am setting my sights high. I am positive that my hard work, persistence and re-learning of who and what I am and what valuable skills that I have to offer over the last five years has cumulated to now where I feel comfortable knowing this is the right move for me. 

I am moving forward with the new me and I really do like her alot.  This is the right time to take the risk, jump in with both feet and just go. I can create a legacy by being stagnant….especially since it is Brain Injury Awareness month and I have been overloaded with the negative news posts and research about how exponential the chances of me acquiring Alzheimer’s are after a severe brain injury. Geeze thanks alot…Hydrocephalus, ABI, Steven Johnson’s Syndrome, Pituitary, Sleep issues, Mental Health issues…hell I am not taking that kick in the pants. I know I have amazing genes on one side of family. I am living as long as my Gran Gran.  So I hope that you can discover and create your own legacy. 


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2015 Theme was being grateful and blessed

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2015 has been over all a great year with some brain recovery strides that were noticeable. Two events really stick out the most to me. Okay I must admit, they are the only two that I can remember. Sometimes having memory issues are a blessing.

The first big stride for 2015 includes finally finding a med combo to ease the 24/7 migraine pain. I am truly grateful to have the migraine pain under control. Our bodies and minds are amazing on how they adapt to situations like 24/7 chronic out of control pain. On the other hand, once that pain is gone it is mind-blowing on how quickly your mind and body forgets how to deal with the pain too as I recently had nine days of constant migraine. Let’s see how can I explain what the pain is like….something like being hit with the worst flu you have every had and still expected to function with work, family, and social activities. I don’t just mean slight body aches…it would be full body aches, head fullness, pain, nausea, slow thinking, slow moving, light and smell sensitivity. The full meal deal and you can not escape it so being resilient beings that humans are, you adapt to it. You minimize you life to the bare essentials and spend the rest of the time recovering to be able to fulfill the next task on the daily living.

The second was having my neuropsych assessment done. This has now put me on a more realistic course for re-entering the land of being a more productive person. This has re-directed my thinking. I have begun to look at my likes, dislikes, abilities, adaptions needed and have some viable options that are now presenting themselves. I still need to re-learn some software programs and do some more soul searching and viability of what my ideas are.

I am truly looking forward to what 2016 holds for me. The “sweet 16” year already feels like it will be great. Deep down I know it will be amazing, prosperous and know that what bumps happen will be easily overcome. I am wishing you all a wonderful 2016 and hope you all feel as positive about the new year as I do. I wish everyone mainly forward motion with 2016.


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Volunteering the Next Step

I hope to take big steps in my life for 2016. I am wanting to volunteer at the hospital to help with the recreation department. I know it will be portering and just helping out, but at least I will be able to see what the job entails and how I react in a hospital situation.

I am saying that I can only volunteer five hours max a week and those five hours can not be done in one day. So I am thinking two days a week for 2.5 hours. I know I can handle that…or at least I hope that I can handle that and maintain doing it for a period of time.

I am so excited…..BUT! I had to fill out an online volunteer application. This weirded me out. For example, it asked about me. Now what do I say there…I had no clue. I am human, female, breathing, alive but a little kooky and broken at the same time. So I scrolled down to the next question. Work experience.

Easy Peasy! I listed off that I worked in the environmental industry. Did contract management ranging from tree planting, silviculture, bridge and road engineering. My largest project was 20 million road to help get approved, built and inspected. I worked in compliance and enforcement where we inspected activiities and tried to work out problems without resorting to enforcement. However, I have and written crown council reports and investigation reports. I worked as a website coordinator for a government organization and had a budget for 120,000 for one website and 40,000 for another website. I took photos, worked with film crews and interviewed people. I also taught at MHC for one semester before my surgery as I experienced hydro induced dementia like stuff. (I still feel guilty for not being a good instructor…showing same video like three times) I loved my work. Work was my life that is the green in me coming out. I am a Green/Orange mix with True Colours.

However, after I wrote all that I was like wow…impressive but I am no longer that person. I can’t even pretend to fake who that person was. Although it never looked like I was organized, I was. I was able to problem solve and think on the fly. I could remember legislation and understand it when I read it. I could easily navigate, read maps, GPS, drive long distances, work long long hours and get up early and do it again. I supervised fire fighting crews and even been on nine wildfires as a sector leader. I could remember regular and scientific names of plants, shrubs, trees, soils, rocks etc… I was able to stand up for myself and hold my professional standards & practices even if it meant pissing people off. I was good at that . I would frustrate the bejesus out of contractors and companies because I would take any shit for their short cuts. I was a fierce one and passionate to boot!

Then it asked for education and awards. So I fill out scholarships,, awards, and my degree, diploma and certificates that i have earned. So now I know the meaning of looking good on paper and really sucking in real life. You know the potential hire that had a great resume and interviewed well but when they got into the job, they just plained sucked and you know exaggerated the truth…god I look like one of those people. How embarassing except I am not lying.

I am at a loss. How do I represent myself now? I have no clue. It almost feels like I am lying when I put down my work experience and education because it seems like so long ago. I struggle with so many things that used to come to me instantaneously and now requires time to think about thinks, process, work out, organize steps etc….

When the person interviews me for volunteering, I am really not too sure what to say. I really no idea how I will perform, if I will make it to every volunteer day or anything. It is like a blank slate in my head. I have nothing to go on.

But I need to go through this; it is the next step in my recovery to get back to the “real” world. I will figure it out and find out what the new me can do successfully at this time and find small goals to work for in the future. It is just today I once again realized the truth in what the Docs saying a seven year recovery time. I am almost half way where.

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The Call

Yesterday I got a call from a Dr. He phone to touch base with me because he has a conflict in appts. and most likely will not be at my appt. on monday. However, his assistant will be there administering my tests. He then asked me what school I applied for. I told him I hadn’t applied to anything yet. I told him I didn’t know what I want or was capable or suitable for me to do.

He asked if I wanted to attend Medicine Hat College? I said that prior to and during my dementia phase I taught at the college for one semester. I said I had been accepted into a Master of Science program at Royal Roads. I told him that due to a lot of factors I can no longer perform in my old profession as I had once had. He said he reviewed my first neuropsych.

I told him I was looking at online Recreation therapy assistant program, art therapy program or masters of counselling or graphic design. But I am not too sure if I could pass any if I took the courses.

I told him that I could write more freely now. That my typing speed made it easy for my fingers to get the words out without thinking too hard. Not like it used to be when writing (excluding bad days…avoid puter then). That my pain meds made my hand work better. That my eyes could take computer longer.

IMG_1223.GIFI told him that I could read books…lots of books…understand the words. BUT and a big but was that I have a hard time understanding context and following story. Subcontext and underlying meaning…forget it. Just like I have a hard time understanding sarcasm and jokes these days, the higher part of thinking is what I am having trouble with. The critical thinking, analysis and all that jazz.

I told him that I wasn’t wanting to waste money if really there was no way I could improve. I need help in improving what was once so easy for me. I was use to be able to draw inferences and bring together ideas for an arugment easy. Now I read stuff and go WTF.

So after what seemed like 30 minutes of talking on the phone (it was probably less than 10) I hung up with a follow up telephone call appt. the 23.

Tomorrow night, hubby and I head to Calgary for my appt on Monday. The first starts at 9:00am. The second appt of the joyous botox shots at 1300 and if I need more tests, I finish the day with those. Boo Yah…getting to getting the call and hopefully more answers to re-work this unique brain of mine


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The Wandering Nerve

kelly dec 2014 234 I had originally been told that I had neurogenic stuttering due to my brain injury. The stuttering began at the end of June in 2012. I guess the increased pressure from my hydrocephalus had damaged my language centres enough for the stuttering to begin. When I was released from rehab, I began speech therapy at the Medicine Hat Hospital. It was there I worked with some great therapists. We worked on speech techniques, word finding, categorization and a variety of other speech related things to do with muscle control and rhythm. I remember that I learned of one the two damaged cranial nerves that was affecting my speech. The Vagus (wandering nerve or tenth cranial nerve) is important for many functions other than speech such as heart rate, sweating, digestion and blood pressure (mmm so many answers are now coming to light).

A damaged vagus nerve can cause issues with muscle control and swallowing in the mouth and neck. I am no expert at any of this but it was explained to me simply that speech comes from the brain figuring out word to diaphragm with the air flow up, to voice box (larynx) where the vocal cords vibrate. From there the sound then is resonated into nose, mouth area. Speech can be disrupted anywhere along the process. I know that I still have trouble swallowing quickly and sometimes choke on water etc…if I drink or eat to quickly. I have noticed this more since I had SJS as my mouth was so beat up and sensitive with blisters, open wounds. It feels like there is a large marble around my adams apple. I am guessing that I have muscle weakness and lack of control on the right side of my neck and mouth that was similar to every where else on my right side. As part of my therapy I had to work on my breathing, hold my hand up on my neck and face to feel certain muscle movements when I said certain words. I know that my stutter comes out with certain letters or letter groupings. It also can come out when stressed, overwhelmed, sick or if I am stuck with the cognitive process of what I wanted to say. Thus I love social media or online interaction more than in person.

kelly dec 2014 118Along with speech therapy, I also attended an Aphasia group at the mall that was run by the speech therapists at the hospital. This was a very good group because we played games and did activities that not only worked on speaking but on word finding, grouping of words and rhythm of having a conversation again.

I had started out with really one word answers of either “fine” or “good” for my conversation depth and breadth. Then I was able to pre-plan a sentence that I would knew would get a person talking so then I wouldn’t have to talk anymore.  From there the amount of pre-planned sentences went up. I would also have a stash of questions to ask. I knew if I asked questions, I would not have to talk much and lessen the chances of me having to stutter. This went on until about mid-way last year.  I stopped going to speech and began going to the Brain Injury Re-Learning Service (BIRS is a part of REDI enterprises), the big red building with paper planes flying. We began cognitive, memory, visual-spatial, awareness and attention rehabilitation. By the end of last year my speech had improved greatly. My stutter was almost non-existent and the biggest thing that no one probably noticed was that I was having conversations that were less and less planned. I was able to be more spontaneous and talk more freely. I had volunteered with the Kindergarten class to help with reading January 2014. I remember reading the Dr. Seus book “Mr. Brown Can moo, Can you?” So everything was going along just perfectly with no verbal glitches. The kids were repeating all the sounds in the book. I was having a great time until and then I got verbally stuck on a word. Here I was stuttering on a stuck word with 16 kindergartners repeating the sounds as they thought it was a part of the book.  Both the teacher and teaching assistant are cracking up at the back of the room and I am now cracking up laughing with my little parrots doing the  same thing. I had tears running down my face as it was so funny and priceless. I loved those kids, they just went with the flow, like I did!

kelly dec 2014 396I think the reasons for my improvement are re-connection of brain pathways due to neuroplasticity, lots of practicing in front of mirror, breathing exercises, word finding exercises, luminosity, word puzzles, boggle, volunteering, helping my kids read, helping my kids with their homework (last year I found some grade two homework hard), speech therapy, Aphasia group, BIRS, becoming slightly more cognitively aware, not giving up, not being afraid of failure, time (as slow as this process is), getting pissed off, frustrated and not settling for a brain injured status quo. I am have also been helped by the wonderful support that I have found on Twitter. There are so many people that I have connected to. Just supporting one another with ideas, suggestions and strategies has been very meaningful for me. Some days my fellow #TBI #ABI tweeters are the only people outside my family I connect with. I was fortunate to meet up with the founder of #ABIchat. This is an online support group on Twitter that I have participated a couple of times to.  I just need to find out when the chats are again (in the brain and out the brain syndrome). I really think healing and recovery of the brain is being re-defined.  Hearing from other high-functioning brain injured people has given me hope that I will find my niche and happy place being a productive member of society again. It really bothers me of the negative stereotypes and judgements that happen when you are labelled disabled and on disability as a form of income. The flippant comments and the poor treatment is often jaw dropping. I know that I shouldn’t let the comments hurt but they do. And it is often just general comments from people who do not even know that I am on disability. I have kept that mostly to my self and immediate family until today. I have to just shake my head and wonder what education level and knowledge where the people with these comments are coming from. I have to remind myself that it is not me but them that is broken.

 


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Bi-confidence

I am at home with my youngest who has a spreading rash on neck and face so I can not go to todays BIRS meeting. I was looking forward to it. Last weeks meeting was good. Apparently i have great self-confidence and self-worth in my personal life but when it comes to my art (not including photography) and trying to figure out a new professional side, I am lacking self-confidence.

But who wouldn’t lack self-confidence when bascially all the you knew kinda went swiss cheesy and into the depths of the deep dark brain. Did you know that most people see their career persona as their number one person…or should i say those type A people – like the old me see themselves or self-worth via professional side only.

So what is my self-worth and being:
a good parent
partner
friend
happy
pet owner
artist
driver
cook
swimmer/water exerciser
writer
volunteer
advocate
and many more that I can’t currently think of.

I am working three times a week at the Brain Injury Releaning Services to get my brain back a bit more so I can either go back to work or go and successfully do my Masters. I accept that I am not ready at the moment. So letting go of a timeline for completion and being “back” into what some say “productive” place in society is okay. I just can’t stand the stigma of where I am at. “Society leech” “tax payers drain” but it is what it is. So really I do not need a professional side of self-worth. I should just throw that out the window and say screw it. Why do I need two or more self-worth pigeon holes. Maybe I will just have one. If people can’t accept the one, they they should filter out of my life.

By allowing myself to do less, expect less and just be, I am having more energy. Less stress = healthier me.

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Neuro plasticity

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Found this article & thought I would share neuroplasicity
I wish there were more treatments here that were covered by health care. Need to ask my brain doc Neuroplasticity, also known as brain plasticity, is an umbrella term that encompasses both synaptic plasticity and non-synaptic plasticity—it refers to changes in neural pathways and synapses due to changes in behavior, environment, neural processes, thinking, emotions, as well as changes resulting from bodily injury.
Neuroplasticity – Wikipedia, the free encyclopedia

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