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About this blog

My journey...escape from Mordor

Entries in this blog

A good status change

I've been waiting to see if my change of physical status was a transitory thing we get from time to time or more long term. Seems at this point it may be more of a long term healing effect.   Every since this started my right side has been weak and very prone to uncoordinated movement. However, for the last couple weeks my right leg has been more coordinated and controlled in its movements which means my gait is immensely improved. I have to temper that with how quickly I degrade when fatigue

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Good news / bad news / confused...

I had the evaluation done today to determine my final status for the stem cell clinical trial. Bad news is I was excluded because I am too strong. They said they needed weaker subjects so they could show significant improvement. On the other hand that is good news and shows that my PT is working. When we got home I had an email from the trial doctor recommending that I look into a separate trial focused on improving my gait which they had noticed. It is run by a researcher in the same area so I'

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Tomorrow is the day

Tomorrow at 10 AM I meet with the study doctor and his minion who has done all the pre-work to confirm I am a fit for the study. Tomorrow is blood tests mainly to confirm none of my major organs are failing, they aren't. Chest X-ray to confirm I have a heart, some people say I don't but my chest is full of wire ties used to put my sternum back together. Will those set off a metal detector at the airport? Then a full suite of movement tests, the ones we've all taken like pick up a marble, now a d

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And the band plays on

Just a quick update.   Check my email yesterday to find a new one from the study coordinator. Seems a new doctor has been setup here because the previous one moved to Iowa. This new doctor according to his resume is a professor of neurology and a section chief for the vascular neurology department. He has certainly published a number of papers on strokes so it will be interesting to see what he is like in person. The pain on my right side continues to escalate slowly, it is beginning to approa

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Time to get back into blog mode

I need a place to put my thoughts about the approaching clinical trial I am on track to take part in. I want a place where I can share the results, trials and tribulations. The thought of having a hole drilled into my head to implant stem cells is a little scary but the phase 1 studies were quite good. And then I consider, what if I end up in the control group? 1/3 of participants are in that group. But that also means 2/3 are not controls. Here is the actual study listing https://clinicaltrials

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Made it through the first 2 evaluations for a clinical trial

After filling out a clinical trial eligibility form quite some time back, the phone rang about a month ago. Took awhile to grasp who was calling but apparently my questionnaire had made it through several selection criteria to make it to a trial team at University of California at San Francisco. Did a phone interview and they said I was a preliminary match for the trial. My medical records and imagery went off to them and today I got notified that I met the criteria to continue the evaluation. S

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Little finger is a big step

For a year and a half I've been looking at my right hand trying to bend its control to my will, with no positive result. I can close my hand but have little control over the pinkie or ring finger, they steadfastly stay extended at 45 degrees to the palm. I kept trying everyday I guess so I felt like I was trying, but many times I did it with no expectation of success, just by rote . I wanted to stop dropping things but have learned to expect that things in my right hand will end up broken so you

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Another small step

If we had a fireplace I'd be in front of it with my stack of unread woodworking magazines but they'll have to wait for another day. I do miss my shop time and hope to get back out there shortly.   The wife is taking a trip with one of her gal-pals to a formal dinner some 70 miles away so I was doing the oil and other fluids check and she needed new wipers. Now checking the oil shouldn't be difficult but trying to put the dipstick into a 1/4 inch diameter pipe is somewhat challenging but with p

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Rant, hurt feelings I guess.

Trying to explain the aftermath of a stroke to normal folks is difficult. It gets even more so when they have preconceptions or just don't want to understand how reality is a matter of perception. Trying to explain how vertigo is an ever present but controlled companion who sometimes gets unruly to someone who's response is "yea, I get dizzy sometimes" makes you wonder why you bother, they are incapable of understanding.   I recently found myself explaining my slow typing skills to one of my 2

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A visit to the doctor and good / bad news

The wife and I went to the doctors yesterday as a followup to our annual checkups. She got her results first and it was better than good. I opined that she was now assured of out surviving me. That got me the hairy eyeball and a 'we'll get to you in a minute' from the doc. Anyway, she is in excellent health and all her numbers are good.   Now he gets to me and starts with 'you have challenges that cause me to reexamine you a lot'. OK, that's not how I wanted him to start. Then he runs down m

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Just some random thoughts

It has been a thoughtful day today, mainly because the lab screwed up my INR so I'm stuck monitoring my blood pressure hourly to make sure I'm not bleeding internally. I could be mad at them I suppose but it wouldn't change anything...besides, my cardiologists PA will perform that task for me in her particularly savage way. LOL   At Thanksgiving I was talking with my sons father-in-law. At one point when my daughter-in-law was explaining (she is a nurse practitioner) that all the doctors are a

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Had a very nice Thanksgiving

It was very pleasant, we had the whole crew at the our sons house. Everyone was inquisitive about my brain injury but very cautious about asking, so I took the advice of my strokenet brethren and broached it myself in a casual way. Something to the effect of all I want is world peace, a pony and a trip to Tahiti.   The Tahiti reference is to a show called Marvel - Agents of Shield. In the show the main protagonist died during a battle and was brought back and in the process they rewired his br

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Wednesday was a special day for me

Wednesday morning after spending the night in Venice FL with some special friends we were headed home when the wife decided it was time to make a little side trip I had promised myself I would make one day. Well 1 year and 2 weeks later I walked into the rehab hospital I had been wheeled out of. Back then balance, let alone walking were always fraught with peril, now we wanted to show them how far I had come thanks to them.   First stop was the nurses station where we all recognized each other

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Almost a year and I have learned a lot

Next Wednesday at about noon will be my 1 year anniversary. That has been weighing on me for the last month and making me withdraw a bit while I evaluate everything my wife and I have been through.   I'll start by saying my wife has been a rock and my greatest advocate. Woe be to the doctor, nurse, etc that she thinks is not providing an acceptable level of care. I'm only as good as I am now because she made sure everything was as it should be and she pushed me onward. That started when they

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I truly like my PCP

He is a more than competent doctor and seems genuinely concerned. Because I had a bleed found only by hemoglobin depletion we do that test every visit. He says he doesn't like getting blindsided, I'm OK with that.   He also has a dry sense of humor that aligns well with mine, sorta dark but in a good way. On my third visit to him he wanted to see me walk and took me into the hallway. We walked to the end of the hall and he opened the door to outside, pointed across the parking lot and said hi

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Rain, rain go away

It has been raining here almost everyday since mid July. Not the summer shower type but the big storms that drop 3-4" in 30 minutes. Flooded streets, overflowing retention ponds, rivers going to flood stage. It just doesn't stop and the grayness doesn't help the spirit. Now we have the remnants of Erika coming for the next couple days. YEA. :grrr:   On the upside, I haven't had to fill the pool in well over a month.

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Wearing the mask for everyone

Sometimes I get tired of people telling me that I look good. I just want to tell them it is all a carefully choreographed illusion. I need to be strong for my wife, if she ever really understood the fog I live in it would terrify her and I won't do that to her, She went through quite enough already. She does know when I'm getting brittle and how to help me compensate and I thank god I have her everyday.   For my friends they all think I'm so much better because I go out with them on occasion a

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A new addition to our home

Our neighborhood has been home to a feral cat population which we have systematically trapped, neutered and returned. Over time attrition will deal with the situation with no interference from the people in the neighborhood. This is the currently recommended process. Several of us provide food and water and in return the neighborhood is rodent free.   Then you have the unusual situation which arises. A yellow tabby was abandoned a few months ago and found his way to our front porch. He was in

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A short essay a friend asked me to write

A friend asked if I could write something for her 6th grade students about life after a stroke. It took me some time to agree but I decided education beats ignorance every time.     Yes, I am aware that you have some basic misconceptions about strokes; I see them on display every day. Hopefully you will never have to deal with the challenges that come with a stroke, they are not for wussies and while I and others who have had strokes continue to improve, it is a lifetime challenge for us.  

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Brain injury doesn't define us

Been away for a bit but I'm back. The last few weeks have provided much needed mental stimulation with the occasional over-stimulation thrown in.   Before this journey began I had been working on an engineering project for a non-profit the wife and I belong to but it went on hiatus for a few months, go figure. The very few who knew about it had taken the secret squirrel oath at the time and figured it was now gone forever to the place my memory disappeared to...   Time passes and most of my

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Mission completed - Faucet installed

It took about 3.5 hours but we have a new kitchen faucet, one of those hose pullout jobs to replace the old, basic faucet which gave its all since the kids were, well, kids. We had bought this tool for doing the work of one of those sink wrenches. It worked well as it is large enough for me to grasp and exhibit some control over while turning it. Even my weak side could turn the fittings using that to both remove the old faucet and put in the new one.   Trying to fit two arms into the cabi

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Pretty good day today

it is 0100 and I still awake, wife and cats are all sleeping, I have a cup of sleepytime tea I'm sipping on, it usually works but I need to be careful as it interacts with my coumadin and acts as multiplier. My coumadin dose takes account of that cup of tea every night.   So today worked out well. Helped a friend spec out a new computer for gaming.   Went to the local library and booked a room for Aug 1. My wife and I teach the state safe boater class. That class is essentially a 7 hour lect

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So very tired today

Sunday we went faucet shopping at Home Depot, the visual and audio stimulation was significant then a stop at Harbor freight, more of the same.   I was a little fatigued yesterday but went into the office to check on things and was very fatigued when I got home 6 hours later. This morning my wife had to get me up as I overslept by a couple hours. Getting out of bed was a chore, just want to sleep. She worries about me and when I get this fatigued she gets concerned. I think in part she sees me

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Where do the memories go when they leave?

I'm left to wonder where my memory went? Short term memory we all have issues with, but long term should be relatively intact. At least that was what they told me in rehab. The really creepy thing is you don't even know your memory is gone because that whole time period was wiped clean, no clues exist , just an empty canvas you don't know about either.. It has gone to wherever socks go when they disappear in the dryer.   But gradually you form memories but they aren't yours. The person who rem

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Saw 2 docs

I had a visit with the cardiologist late last week about my bleed a couple weeks ago. No idea where the bleed was from but the suspect my INR went high and blood was diffusing through the intestine wall. He pronounced my heart sounded good and had a stable rythym. He said he was very pleased with my progress and that I far exceeeded his expectations considering my initial state months ago. He also released me to return to the gym as I see fit and changed my morning dose of BP meds (coreg).   I

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