Howdy Hydrocephalus

Understanding my unique gyroscope


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March is Brain Injury Awareness in The United States

It has been a very active Brain Injury Awareness month. I have read so many wonderful tweets from fellow survivors and bloggers. I was even asked by Lyrysa Smith about Hydrocephalus. She is a journalist, book author and caregiver to her sister’s ABI after carbon monoxide poisoning.  She read my blog and then messaged me some questions. What an amazing person.

It is always meet such positive advocates. People with TBI and ABI need positive advocates. We also need to have more up to date resources in smaller centres.

I hate how I have to explain what my condition is, what an ETV is and now have to explain that my hydrocephalus gets worse when something is affecting my body to ER doctors. I will voice stronger rather than be put off like I am over reacting. I have a reason to be concerned. When my Hydrocephalus symptoms increase…head pain, pressure, more right side fire ants/tingling; I begin to walk funny again. My right side grasping and coordination start to fail…I can accidentally drop or throw items in my right hand. I also have a hard time understanding people especially when on the phone. My cognitive gets worse too. My short term memory is really bad normally and it takes and extreme amount of effort and time to move items from short term to working memory to long term memory even gets worse. My perception begins to change and the world can begin to get all swirly again and off balance again. 

These symptoms are the only symptoms I have to go on if there is issues with my Hydrocephalus. I do not know when I go into the ER if my ETV hole is partially plugged and flow is disrupted or anything other. I am told to go the the ER by all my Doctors in Calgary when I experience these symptoms. But When go to the ER here in Medicine Hat. I am shoved off into the cubicle B of less serious cold, flu & malingerer section and made to wait. (I don’t mind waiting as I know people come in with serious conditions but my can go sideways quickly and being blown off all the time is not cool). By the way the same one where I sat with Stephens Johnson’s Syndrome all blistered, bloodied mouth and peeling skin) as triage didn’t think I was serious when in fact I was being poisoned by my Meds and burning from the inside out. (PPL make mistakes and that nurse made a huge one. I still have rash and skin issues to date). 

I dislike that when you have a life-long condition and that you are made to feel you are wasting the medical system, hospital system, tax payers money when I go into the ER. No my condition never gave me a huge fever and my blood pressure would always read 120/80 (which is high for me but they always ignore that with a polite tight lipped sneer of someone who fully believes they are more qualified to know my body better than me) even before my brain surgery and definitely not after. Only once was my blood pressure at 170 or higher and they stick couldn’t figure out what was going on…infection…partial blockage. No on really knows…most likely me panicking because I couldn’t stand. 

 It is not like I go in on a whim. By the time I voice my conditions to my hubby I have thought long and hard if they are serious, is it just me over reacting etc….By the time I mention to my hubby, he will usually say it is better to waste your time in the ER and find out rather than sit and wait and maybe have things get worse quickly. He always asks if we should drive to Calgary and get the on-call neurologist. I always say no, that it is too much of a drive.  I dislike that knowledge level is not that good here. I dislike that I am going to explain more and more at the hospital. And then for them to say…it is not the hydrocephalus…it is my sinuses, anxiety, in my head, i am faking. Why put me on the defensive. Do you realize how much that hurts to me mentally especially when I am so much in pain and on the last rungs of hope. But when in fact they symptoms are my Hydrocephalus increasing because my body is fighting something. My neurosurgeon explained that Hydrocephalus symptoms will increase when there is something going on in my body. That my hydrocephalus baseline should return once what ever is going wrong in my body has been addressed.

So far I am three months of feeling off and I am not any better. The regular doctor gave me nose spray, I am taking allergy pills and I am now debating to go back to my Dr. Office and be a stronger advocate. The last time, the Dr. I saw thought I was a little aggressive. Hell yes! I am sick of not being heard. Sick of no solutions. Sick that they experts keep pawning me off saying not me…and saying I need to see someone else but no indication that a referral has been made. I am sick of the same cycle of treatment I had before my surgery five years ago. It is like they want you to fall through the cracks.

Why don’t  the Doctors and nurses just say…well your hydrocephalus symptoms are worse and that is an indicator that something is wrong in your body. Let’s figure it out so you can feel better. But no none of that. Oh hell no…no patient care…more like lets see if we can get her to go away. Truly our system is broken when you have to be a broken wheel, act like you are in severe traumatic pain (I don’t I get quieter and quieter as I focus on mindful meditative breathing and imagery) to be seen quicker and to be taken more seriously.

Thank goodness I have an appointment with the brain injury clinic in Calgary in April.  I know my Doctor there will listen to me. I am counting the days to actually be heard. Why is it that the brain injury clinic, endocrinology clinics and neurology clinics in Calgary take the time to really listen and find solutions. Why is there no out of the box thinking here in Med Hat? suggestions…the “let’s try this” type of approach. I mean really it does not take that much time to sit down and brain storm ideas. To verbally communicate, visually communicate with pictures from the computer. To take a risk and try something new.  


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Back on the writing bandwagon!

images-8It has been an really long time since I have written. I have not fallen off the planet, but have been challenging myself even further. Even though I love to write, there are many other things I have been focussing on such as creating art, graphics, starting a small very part time graphic design and creative life coaching business. I am unable to fit them all into my life at the moment. One day soon I will be able too! It is a goal I am working on.

My life has been changed since September to end of December. I had amazing energy, concentration and steps to move forward. I was able to attend  two craft shows and make for me a lot of goods. Christmas and the New Year were a success. I got everything done for the family, rested & played too! But then January 1st, I woke up with the worst cold ever. From January to now has been an interesting month. I have learned some takeaways about Hydrocephalus that I did not know before. Because of my new knowledge, I have finally decided to work with the Hydro instead of fight it in this case. Fighting it will only make it worse.

So What did I learn? I learned that if there is a stressor on my body like a cold or a completely blocked sinus (with a mass that potentially they think means trip to Foothills again soon) can affect the baseline of your hydrocephalus. So what does this mean.

fb_img_1443293628775My MRI showed that I had amazing flow. I love that my Dr. Sits me down and we look at the images. I love that he explains what I am seeing. He said the grey area where my hole from bottom of 3rd ventricle show cloudy grey. He said that was turbidity. I said “that is to be expected. When flow of fluid has to go from big space down a narrow tube – it speeds up – basic physics…you know my background before all this was science!:”  I almost knocked myself off my chair when this came out of my mouth. I was shocked as shit that my brain just pulled off something that I thought was long gone.  Nope just in hibernation waiting for my neural re-connection.

Distracted Side note Inserted here:

The black hole of my brain injury released some new information. Lately I have been experiencing this more and more…snippets of old knowledge and experiences pop into my head.  I wlll write a blog post of what I can compare this to in hopes that it can help fellow TBIers but their experiences into words.

images-5So my new baseline was how awesome I was doing before feeling cruddy in January. This means that until my stressors on my body…the blocked sinus thingy will continue to put negative stress on my hydrocephalus until it gets addressed. So in the mean time I will experience and increase sleepiness, tripping, falling, dropping (or accidentally throwing items), weird walking stance, numbness, tingling, head pressure, pain, and cognitive decline. I have been having a hard time figuring processes, and steps to getting things done again. Decline in remembering what to do with Adobe Illustrator again. I have been saying the wrong words for things more and more. For example for the last month I have kept telling the boys to put their laundry in the dishwasher.  

images-2You know that gets old quickly when you have two parrots who are like okay and start to put their dirty laundry in the dishwasher. My kids are jokers I say…but when I am stressed mentally with the weird symptoms that have popped up in my life, my sense of humour is greatly diminished. Actually irritability, and anger have popped their dragon heads up again so much that the boys have noticed. They joke that driving with mom is like “beepidty boop boop beeep” with the added family finger.

kitty-fingerI have been reassured that symptoms, although scary will go away once the stressor is fixed.

Let’s hope this happens quick before my control and filter completely disappears and I actually tell off a stranger who is pissing me off.

 


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Missing Me

For the last month and a half a series of events accumulated for me creating the ultimate pity party for missing my old self. This reached it’s peak and dissolved mostly when my son re-broke his right leg again. He broke it the first time in October during hockey assessments and the second time at the last game of year in a tournament last week.

So what led up to me missing my old self? Me missing the old me has never gone away. I was so much more than what I am now. I was an adventurer, I had endless energy, like to keep busy all the time from morning until night. I was raised to be a strong independent person. I was not afraid to use my brain, my voice, reason and research to get my point across at work and in life. I had two little kids that never knew that they accompanied when I had field work. They thought we were always out for a drive. My kids were to young to remember the old me. They only see me as the “lazy mom” who sleeps all the time. Usually I laugh it off, but lately, it has been hard to laugh off my quirky new me.

I am a lot different now. I am Skinnier than I was before by about 15lbs but I am 1000% times weaker and 1000% fatigued where when walking up stairs, I lose my breath. I am no longer spontaneous, I have to plan and allot my day so that I can make it with the least amount of napping as possible. I have to plan my day to minimize my visual, auditory stimulation, so I don’t get overwhelmed. Sometimes that requires me to do odd things, like move to where less peaople are, leave or just not go at all. I easily forget what my intent was for shopping, even with a list. Often I will forget the same item on the list five or six grocery trips in a row. I just misread the word or don’t the the word. I try to understand group conversations but honestly, that takes a lot of work and usually am behind in process in the conversation so that when I talk, I am behind. My anxiety goes off the charts in the new situations with people. My mind goes blank so I don’t remember what I am going to say and my stutter comes out.

So what led of to not being patient about the new me and missing the old me was seeing people from my past and then socializing with new people.
I had three bosses. Two I was very close to and both their wives were just awesome. I say 2nd in command’s wife at a local store. We were chatting about paint chips and colours when she said “Don’t you recognize me?” Awkward is all that I felt. We chatted for a bit and I left.

Then two weeks later, I saw the company founder in Canadian Tire, we were both looking at the seed growing trays. He gave me a big hug and we chatted. He wanted to know about my health but at the same time, you could see the sorrow in his eyes and he really didn’t want to talk about my health. Then I got his wife’s name wrong and we parted ways. When we were talking, my vision started to get all wavy like aura’s for a migraine. I made it out to the car and rested for a bit, because I thought I was going to pass out. After this I felt physically horrible for a few more hours.

I then got my recent neuropsych report in the mail. That was no picnic to read. It is hard to read that I have neurocognitive impairment typical of Hydrocephalus Squellea. I started to feel so crappy that I began to visual journal to help boost my spirits.

A week ago, I was thrust into my first ever hockey parent away tournament. The social anxiety got a hold of me more than a couple times and there were awkward moments, bouts of word finding, stuttering and complete mouth hanging open zone outs, but I survived. I had a fun time…socialized, drank some ciders and beer and got to know some great people. But so very very tiring. I didn’t get my rest in and my functioning was near empty when my son broke his leg. I spent so much time recovering that the Easter Bunny almost made a big mistake. I had thought I had bought Easter Candy so when hubby and I went out, I said we didn’t need much. So when I checked the bag of stuff I had originally bought there was only two Easter Bunnies. I raced out the the store last night around 7:30pm to scour the empty shelves and peruse the Easter Aisle in hopes to get more Candy for the two kidlets and our two international students. CRAP….today I remember that I never did buy much because we were to be in Vancouver for Easter. So problem adverted right.?! I stocked up on candy…now we have enough to little eggs and jelly beans to last until summer. I fall asleep, D crawls in bed with me while Wy and hubby are downstairs sleeping. At 1:30 I jump out of bed….crap…the Easter stuff needs to be put together and hidden. So for an hour…I am trying to hid candy with a restless broken leg kid on the living room couch who is sitting up in his sleep, calling out and I am ducking behind chairs, doors and the kitchen Island. All I can say is that morning came too quick and I have had a lazy lazy day of reading, sleeping and eating chocolate.

We did have turkey for dinner, but instead of a full turkey, I got one of those box turkey breast rolls. Kept it easy and it made a world of difference. So the events of last week kicked me out of my own personal pity party and I am glad. I am sure they will pop up again.

It is just so hard because people you used to know…know you for when you were so much more. Now I just don’t feel whole. I am grasping,,,cringing when I respond that “I am a stay at home mom”…my bias and self-loathing running in my head. It is not like it is really popular to say “Hey I am one of those lazy people on CPP disability who should just get out and get a job” It is currently a rough economic climate so when people spew their frustrations, I am unknown to them usually a part of the lazy crowd. I just keep quiet, but you know it still stings. Doesn’t matter even as an adult, when people are mean spirited or cruel it still hurts. It is hard when the people around you also get tired of “supporting or caregiving” for you. They don’t like the added responsibility of picking up slack. I just can’t get anything done. I forget I was working on organizing my passwords, I forget I was working on a business plan, I forget to cook…I just most likely get distracted by other stuff and short term memory loses it. I forget what to do for my day unless I write it down the night before. A week later, I will not remember what I did.

So I am glad for the helping distraction. I have learned this week I still really like my art and creative making because I missed it so much. I also have enjoyed helping my son quite a bit. It feels good to be wanted and useful. I guess I will continue to take the good with the bad with a smile on my face and eventually, all will fall into place. When you fight for stuff and keep getting walls, then maybe that is not an intended path so I must continue to remind myself to be open and allow grow and move forward on it’s own. And yes to my lack of patience…it will take time. GRRRRRRRRRR!


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Neurosurgeon says ETV a success

Last week I went and saw my neurosurgeon. I had a scan done in January of my brain. He confirmed that the ETV hole has good CSF flow and everything looked awesome. He then gave me an MMSE or mini-mental state exam.

He has administered the test three times to me. The first time I scored 24, second 6 months later 25 and 26 just last week. Basically this test is usually used to figure out cognitive impairment overtime with patients with dementia. The test does not incorporate your education level so that has to be adjusted when scoring. My neurosurgeon indicated that prior to surgery I showed signs of mild cognitive impairment…no shit Sherlock. I forgot how to read a map, where the hospital was located, how to do my job…that was scary! It was so frightening to see things slip away, but by the time my surgery, I so impaired that I showed no rational fear about surgery or risks. Since surgery I have thankfully shown progress and now considered not to have cognitive impairment in his eyes or so he lets on!
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The test was easier for me on some parts and challenging on others. The second time I took this test, I had trouble counting back by sevens from 100 that the doc asked if I was trying and I got all teary-eyed. This time I did better and I was impressed with myself. I also 3 out of 5 objects without prompt at end of test. With prompt, I am got one more item. I had trouble when drawing my clock. I couldn’t remember which way the hands went. I was supposed to do 1610 but think if came out like 1320 instead. I even admitted that I couldn’t remember where the hands where to go.

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The funny thing is that people often say that my neurogenic stutter is gone. True the brain is healing and the speech therapist tips, tricks and strategies have helped me considerably but the darn stutter reared it’s ugly head showed up again during the counting backwards part of the test. I think the stutter shows itself, not because I am nervous, or anxious but when my brain is working hard trying to get those connections firing again. I have had so many tests like the MMSE and more intense neuro psych testing, there is no reason to be nervous. I get amazed where I have improved now rather than mouthing hanging wide open…wondering what happened to me.

I admit that I have made large strides and that it is somewhat surreal for me still when I have more than one good day in a row. It is now up to two or three good days in a row (with proper resting and time management) and then I have a bad day and go “oh yeah…this shit again” This TBI/ABI recovery is like a clinger….just won’t let go no matter how hard you try to flick it.

This journey amazes and frustrates me every day. I am so grateful to advocate on behalf of myself more. I understand, interact and communicate more easily. The world that I live in is no longer like being continually drunk or on a spinning amusement park ride. I have the attention span to watch most of a movie or tv show. My memory has improved I have also learned strategies to help with organization, planning and memory. I still need to use those techniques on a daily to basis because if I let them slide, I will become anxious, freeze and not get anything done because I can’t figure out priorities or tasks to do on the fly. I become obsessed over ideas,things and projects and forget about all the other things that I need to do in my routine. I will forget the most basic things but will remember the oddest most inconsequential shit. Chris always shakes his head at me like I am a savant…then we laugh. These are just executive functions of the brain. They will also get better with time too! That’s it time…that seems to go painfully slow with my recovery but yet so fast with other parts of my life.


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Bring TBI’ers, Elderly & students together

I realize that I am no doctor, researcher, therapist or anything in the medical field. Because of my luck, I have been exposed to quite a bit of resources in the medical and rehabilitation field that I have some insight that may help people with aphasia and brain injuries.

What got me thinking was the news story of a Dutch retirement home that give students free rent in exchange with socializing with residents.  I think that retirement homes isolate people with ageing and chronic illnesses that instead of creating a resilient environment it is an isolated and forgotten place.

When I was working as a government employee, I was so shocked to see that there was no job transition/mentoring in place, especially with highly skilled employees that were almost ready to retire. I watched talented people retire with their wealth of knowledge not passed on. A new person gets in the position and basically starts over. There is much overlap and redundancy and re-inventing the wheel. We have lost a generation or two of information transfer due to this. It is a shame! Then we are experiencing the baby boomers retire at 65 healthy, strong and going stir crazy because they are now perceived to be “worthless or old or redundant” pieces of society. That is hurtful. I am so grateful that the 2015 movie Intern was released. It is starting to mainstream the breaking down of barriers and re-starting generational information transfer.

I then also saw first hand how isolating health obstacles can be. When I was doing my speech therapy once a week and attending a small speech group another day a week I felt I was not making progress in my recovery. I went into my son’s class and read to the class…stutters, stammers and all. The kids didn’t notice at all and thought it was apart of the story being read. I felt great after that. I asked if they needed help with reading and so I spend once a week for 30-45 minutes leading a reading group with five kindergarten students. It was here where my speech, thinking improved the most. I also felt like I was apart of a community and not isolated. Even though I attended a group with 6 other aphasia people and two workers before, it was more of a health treatment type of feeling. The feeling of going to an appointment for dentist or something like that. It was not a community feel, but a medical feel to it.

I really think that bringing TBI’ers, Elderly and students together in a learning environment would benefit everyone. Even if it is students going into the retirement homes to collect stories, help with crafts, reading, exercise, board games or just socializing can be beneficial too! I even think that having a retirement home/day care would be beneficial too. Daily interaction with kids…what couldn’t get better than that. If there was mentors brought into school and used to help kids with one on one stuff or projects.

So my hope is that all of us tossed to the side people find their community and become less isolated. Being able to think, do physical activities, work on your quirks in a “normal situation” can help recovery. It helped mine. I was practicing my tactics in a real world situation instead of an office.

This type of working agreement could be beneficial to two goverment areas medical and education. There may be some cost savings in long term health care and in education with the use of volunteers.

Who knows…but I have positive thoughts that it could work.


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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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Look’n Good

images (5)I saw my very good friend today and she said that I look tired but very good. I had to agree with her. I am looking but feeling exhausted. I am so dragging, headpressure and pain. Not enough to get me completely out of the game of life but enough that I know it is there. This feeling is like an annoying hangover which would be okay if I had earned it from the night before.  Nope just get the feeling. Lucky me.

Last Monday, I had my neuropsych assessment. This is the second one I have had. The first was when I was inpatient rehab when in Unit 58.  It started at 9am and went until 12:15ish. I was exausted and felt sick to my stomach after. It was an interesting series of tests. I had to laugh at the peg test and the grip test. Oh yeah…lacking coordination and strength on the right side…it was quite amusing as I was doing it. I like the block test where I had to do patterns. The attention and memory tests were sucky but I plodded through everything.

downloadI then went to cafeteria to get lunch. It was so busy that I only sat there a few minutes and decided to go check in to sit in waiting room where it is usually quiet since I had an appt. with my Physiatrist for 1:30pm.

I check in; walk down the hallway where the waiting room nook was empty…score!!! I settled in and tried to eat my sandwich but I still felt sick to my stomach so I stopped. I was sitting there with eyes closed, relaxing in the relative quiet of a busy hospital when a person comes down and he is loud. He is another outpatient like myself. However, noise is not an issue for him but being loud, obnoxious were some highlight characters he exibited. Then he said he was there for his anger…while stating that the police are  corrupt and he got his injury from police when trying to arrest him. OMG…I think that I am going to lose it and police might come arrest me becuase he will not shut up; I am tired; feeling like shit and trying to really be polite. I do this for forty minutes. Finally I get up to go to the washroom and a young intern doctor motions to me as I come out that the escape route is to the left. I explained that I need to wait and the look of pity was did not go unnoticed. Then he gets called out…peace & quiet again. I shut my eyes and sleep again.

When it is my turn to go in, we talk about how I am doing. I tell her that there is no way I think I can be a sucessful counsellor, I don’t think I could really listen to people all day. We check go over meds and then do the Botox. Chris was in room with me by then and it is his first time waching the process. I guess when it goes in, the skin all inflates and there is a big bubble. The needles never seem to go quick enough. I even yelled out once or twice. 20151120_094254I even ended up with bruises on my scalp & forhead this time.  So the remainder of last week and still this week has been a little uncomftable.

The Psych called today to give me a rundown on my results. He said that I had improved in all categories but memory went down. He said that if I want to go back to school or re-train, that would be best at visual and hands on. That is good news at least. Options. I don’t think a Masters is in my future anymore, but I have a couple other ideas in the fire right now.

The memory going down is a concern! I have been experiencing other potential hydro issues but have been ignoring them for the last couple months but today I ended up sending email to Dr. to see if we can get a head scan. If there is another issue and I need to get an ETV again, I would rather do it sooner than later.  Below is a list of common symptoms when your hydrocephalus is acting up or things are not flowing right:

Older children and adults may experience different symptoms because their skulls cannot expand to accommodate the buildup of CSF. Symptoms may include headache followed by vomiting, nausea, blurred or double vision, sun setting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss. taken from.Hydrocephalus Fact Sheet