Drinking and Hydrocephalus Part 2 (Updated)

I certainly was drinking a lot still the last time I wrote about this subject, and I had periods of time where I was drinking way more again. I stopped drinking hard liquor for the last time in 2017 and MD 20/20 and other replacements soon after with the exception of malt liquor. I stopped drinking malt liquor in 2022, and then started drinking beer only in moderation soon after. I've only been drinking a max of 2 beers at a time, and I'm on my 3rd months long sober streak (Anywhere from 3 months to 10 months at a time). I plan on easing my way back to 3 or 4 max, and drinking mixed drinks in moderation and definitely only socially. But right now is definitely not the time. I didn't start drinking until 21, and I started over drinking right away, but I kept it once a month. But my drinking started to get worse when I started working at a restaurant near a lot of bars a year later. I was definitely at my worse when I was 30, but I realized I was living dangerously, and was able to cut out hard liquor and anything that was close enough, and stopped hanging out in bars (specifically at night). I'm aware that there's people (with Hydrocephalus) that's going to read my blog that can't slow down as much as I have (or quit if needed). But keep shunt issues in mind when you are. The "bum wines" like MD 20/20, and Night train are the worse in my experience for temporary messing with my shunt, hard liquor, draft beer, and canned/bottled beer last. I have very little experience with normal wine. If you decide to switch to another kind of alcohol in order to drink less, please make sure you test the waters to make sure it's not actually worse for you. Edit: I found out that I've left out some details out for anyone that either doesn't know me well, or are pretty new to my blog. I started having shunt malfunction symptoms in 2009. I've made some progress, but it's been mostly in the other direction. It's some of those symptoms that get worse when drinking MD 20/20 and hard liquor (when getting drunk too fast).

Open letter (message) for a person who I've come across at least twice in 2013/14 and 2022.

First of all, there is someone who I've come across twice that I would really like him to contact me if he sees this blog post. I've seen you at least twice. The first time in 2013 or 2014, and the 2nd time in 2022. The first time at a Fry's Food Store location in Tucson, the second time in Scottsdale at an AirBnB in Scottsdale. The first time you either found me in my department (produce) or found me and needed help finding a specific kind of non-alcholic cider. You were young and I noticed that it at least appeared that you have hydrocephalus and cerebral palsy. I decided that it would be really wise not to mention it to you. The reason I noticed is because I have hydrocephalus myself and have a close friend with cerebral palsy who I happened to have multiple run ins with before formally meeting. I also am mentoring a family friend's Son who has both hydrocephalus and CP. I met him for the first time around the time I had my run in with you, and then I started mentoring him by request of his Mom in 2019. I won't talk about why I was in Scottsdale on a public forum due to someone I know using information against me. Some was posted on social media, some not. But I thought you were possibly someone else until I found the other person on Facebook, and realized it wasn't definitely not him that I saw. I started to think of people that would recogonize me that resemble the person who I saw, and you're the most likely canditate. I say this, and took the time to write this post because you looked at me like I looked familiar. I could be wrong due to the circumstances, but I do really hope it was you, and that you see this. For a better timeline I ran into you somewhere between March 2022 and November 2022. The first time would have been December 2013 or Janurary 2014. I also wrote a blog post about you at the time too. I also wanted to explain my absense without writing a blog post only about not writing, because I've done that too many times before. I've told at least one person that I'll committ to writing my blog, and not go past the year mark again. I've been really scatter brained, and any other topic I've written about will require research, which isn't an option right now do the certain circumstances.

Elementary School P.E/Adaptive P.E rewrite

I scrapped two posts a while ago when I was getting rid of posts that were really inaccurate. With two of them I turned them into drafts because of inaccurations and putting someone into a good light that hated me (a teacher). They were a lot more in depth than this post will be. I'm going to read into those posts later, and possibly make another post about this subject. I was talking to a few people on Facebook when I was in high school. But someone found me several years later in hydrocephalus groups on Facebook that started to send others my way right away. I found out through some of these people, and in the hydrocephalus groups about people who had to sit out completly because of their shunts. From what I remember most of these people were/are older than me by a decade. If you're just recently looking into my blog current shunt technology really started to improve in 1962 with a shunt that Roald Dahl helped invent to help his Son who has hydrocephalus. Before his shunt the technology exisisted but it was far more dangerous, which says a lot considering how bad things can still get now. So the survival rate really started to improve at this point. Which is why I've never really met anyone with congenital hydrocephalus (either online or in person) that is currently much older than 60. There was rules regarding football and contact sports that had to be taken seriously in my case, and they were. My 5th grade teacher noticed how bad I was doing athletically. I ended up in Adaptive P.E for 2 years which was either 1 on 1, or 1 on 2. It helped a lot, although I've made no attempt at sports since High School. I had at least 2 adults in my life that was making a huge attempt at making me feel like that I was mentally retarded. The adaptive P.E instead went out of the way to do the opposite. There was other stuff going on at the that made me black out things that the 2 other adults were doing to make me feel the wrong way about myself. But even though it was the same period, I either never forgot the words that the instructer used to make me feel better, or it was far easier for me to remember how he thought of me. Look through my labels at the end of the web version of this post for my post about Roald Dahl. I'll be working on a more indepth post about him soon. I haven't been able to work on more indepth posts for a while for multiple reasons. Thanks for reading!

Phoenix Hydrocephalus Walk 2023

I've had a noticeable amount of views on my prior hydrocephulas walk posts recently. They had T-shirt pick ups for 2 years due to Covid. They had it at SkySong last year, where they'll have it again this year on October 28th. Unfortunately it's looking like this is the first year since I started going in 2012 that I won't be able to attend. The venue has a large parking lot where they have registration, booths, games etc. set up. The path they use for the walk itself is great. If you're coming from out of town there is a hotel right next to the venue, and a Motel 6 close by near the zoo. Last year I stayed at a affordable Air BnB that was a mile away. Public transit is available very close to the venue. The Great Pumpkin Race in Tucson raised money for both UMC/Banner Health Neurology department and the Hydrocephalus Association at certain points after I started attending around the same time I started going to the HA walks. The last one was in 2019. It was started for one of the Co-Host's Son. He is now a Uni Student it is highly unlikely they woukd start up again. There is a link to Phoenix HA Walk page below. Thanks for reading! https://secure2.convio.net/hydro/site/TR/WALK/General?fr_id=2051&pg=entry

Participating in a Special Ed Track Meet against my will (in 5th grade).

Before I start I have no medical problems other than hydrocephalus. The last 14 years has worn me out, mostly having to deal with the problems with my shunt. When I was in Elementary especially later on I had trouble running because of my ankles, dealt with my speech impediment, and motor skills. Special Ed classes didn't start until Middle School, and it made me normal enough because of the other kids in the class. We would have a feeder school track meet for Elementary Schools going into the High Schools in the district. They went through the process of finding the fastest kids in each participating class in each grade. I didn't expect to not come in last. I didn't question it when I was called into the office to be given a shirt the day of the track meet, and was sent along with everyone else. I wasn't told at all what was going on until I was called to run with kids from other Elementary Schools that actually had severe physical/developmental disorders. We all got a blue ribbon after, my main it just as far a the closest trash can. I had no choice than go through with it, and get out of the view of the other students as fast as I could. This changed the way I see myself immediately. People are way more likely to jump to assumpations about me as an adult than when I was a kid. I'll post again if I find a way to deal with it, other than complaining whenever someone makes themseleves obvious. Purposely getting away from certain people has been the best option so far, but not always possible. One thing I didn't mention at first. My Parents weren't notified at all, and my Dad was pissed. My Teacher that year went out of his way to have my back, and the Principal did too. They would have found out last minute without being able to get me out of the situation.

My experience with missing hydrocephalus/shunt related symptoms as an adult.

I hit my valve hard in Janurary 2009, which had happened multiple times without any problems. Between my history of being fine after, and not having insurance at the time I didn't seek medical attention. I developed headaches soon after which varied when it comes to pain level, but got consistently really bad for a long time after. I had a CT Scan in June of that year which showed no signs of increased ventricles which I was able to pay for out of pocket. When my insurance from my job started at the end of the year I went to the ER. The scans came back the same, and I was referred to a neurologist. He gave me a diagonisis of TMJ, and it seemed that I couldn't get a refferal to my neurosurgeon. I had issues with my finances soon after including not always getting enough hours to have my health insurance through my job every month. When I was getting the health insurance. Between the two, and other issues I flkaed out for a while. I went back in 2013 after I was promoted at my job, and was able to get things in order. The scans including an MRI all came back looking normal. I was sent to a neurologist, and she tried multiple medications. It was mostly meds like low dose seizure meds that can also be used to treat headaches, because of not knowing for sure what the source was. She also tried botox, and the only time time that I noticed that it had been working was when I could tell it was wearing off months later. Between feeling like I was hitting a dead end, and having to deal with other issues I stopped going to appointments for what was supposed to be a short break in 2015. Due to finacial issues, and a lack of motivation I didn't go back until 2019. It started with more scans, and a couple other routine tests that I had done before. It ended with the same results, and no option to continue on at that point. I had a incident at work several months later that I was, and still am certain that it was shunt related. I went to my neurosurgeon, and got the same results. The scans were close to the same, but I was told that the previous neurologist had given me a referral to a neurologist with more experience that was right for me. From there I was referred to another neurosurgeon in the same office that the neurologist is at. After the routine scans, I was given a lumbar puncture which showed that the pressure of my cerebrospinal fluid was way higher than it was supposed. Since it's been confirmed that we found the source, I've been a lot more hopeful. I've had symptoms the whole time, some of which has gotten worse over time, the most noticiable one being dizziness. But since my scans looked normal, and I wasn't showing a lot of the major symptoms I wasn't able to start to get the needed help for over 10 years. Below is a link to my first post on this subject about having a similar experience as a baby. http://timothy-landry.blogspot.com/2022/06/my-experience-with-missing-major.html

My experience with missing major hydrocephalus symptoms as an infant.

 My shunt was placed when I was 16 months old. But I was showing symptoms long before that, possibly as early as when I was born. But it only became obvious that something was wrong with me when I missed multiple milestones. My major symptoms were missing milestones that involved having to pulling myself up. I was eventually hitting them, but it was a very slow process. My other major noticeable high pitched screaming. But I was either missing the majority of the others, or they wasn't noticeable enough for my Parents to get a referral to a neurosurgeon. What got me my referral was a nurse at a free clinic noticing me. She showed up to my Parent's apartment did head measurements, and got me a referral to my childhood neurosurgeon. It all happened so quick that my Parents didn't realize what was going on in time to thank her. My developmental delays that I had as a infant immediately got better. I had other delays that I still struggle with, but most of them got way better with different therapies as a child. Most of them are normal with people with hydrocephalus, or other neurological disorders. But there are two that my parents were told directly involved my late diagnosis. Those two are my speech impediment, and my hand tremors. I couldn't speak until I started speech therapy in Preschool. It slowly got better, but it got to the point in high school where being pulled out of class was a bigger issue than not getting the last few years of speech therapy I would have gotten before finishing high school. My hand tremors started around the time I started puberty, and hasn't stopped since then. My current neurosurgeon told me that it's not necessarily because I was diagnosed late, but it may have been caused at that age because of certain hydrocephalus symptoms coming back, or starting later on in life. I'll talk about both more in future posts. I'm hoping to write another post this week, about my experience with a lack of shunt malfunction symptoms this week.