scottm

Don't you love it when they fix something and you go back to start PT over with all the pain and hard work. But then one day you say, hey, this isn't so bad. Remember that we're all there in spirit cheering you on.

Greetings David, This is the link for the one I'm looking into. https://clinicaltrials.gov/ct2/show/NCT02448641 I have my first appt with my new primary tomorrow...should be an interesting icebreaker. The wife saw her today and she was impressed which doesn't happen often. She did warn her that I was still sensitive about the being alive and operational against all the odds. Survivors guilt maybe? I don't know.

Thanks for all the kind thoughts. I got the package the other day and discovered that they are not yet ready in this area. They think about a month before they have everything ready so I'll have some time to consider. I think slowly these days so having time is good. To paraphrase the Ents, anything worth thinking takes a long time to think.

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. Sometime in the next week I'll get a list of the local hospitals who perform the next level of tests including redoing all the MRI's and CT scans. I've done my homework and this study is FDA approved as a phase 2 trial, phase 1 showed some improvement for the study patients motor control. Of course everything has a downside, this study involves "minor" brain surgery where they drill a hole and inject specially crafted stem cells into the areas around the injured areas in my brain. The stem cells then help those sections create new pathways restoring some function. I'm not completely sold yet, still have questions and top on my list is some level of assurance that there is no Flowers for Algernon scenario at the end. I'll update this when I have more info.

When I had my last colonoscopy the nurse came in when it was over and told me I got an A+ for prep...I never knew you could fail at that part. A couple months prior to that I had one that they said I needed a do over because I had been taking iron pills per my doctor and they said my colon was as black as a coal mine. The things we learn...

Nicely done Jay.

That's awesome! Glad to hear you are getting some relief. Hopefully this will continue to work for you. My wife went through one of those years ago and it was no fun when they were finding the nerve.

The doctors can know on an intellectual level what we go through but even they cannot comprehend the concept of pain that never stops. All day everyday and night. Relief is sleeping a few hours. Until they have it happen to them or they become a caregiver this remains an abstract concept. Ask them if they ever burned themselves, then ask them to imagine that sensation lasting for the rest of their life. But, we also have strength that even when it ebbs is powerful. We didn't get a vote about how we continue on so we just do the best we can, our strength is what comes to define us. We have been through the crucible and come out the other side different. You are not alone, we are all here to help however we can. I'd offer a hug to help if I could. () There are still always options. One that was mentioned to me was ketamine which can reset the pain processing, worth asking the doc but it is a very specialized process. I've got a call in to my neuro since yesterday about the pain the spasticity causes. Like a 24x7 charlie horse on my right side. I'll call and annoy him again shortly. The nerve pain is manageable today, sometimes that's as good as it gets. Hopefully that makes sense but I'm in a haze today so please forgive me if it doesn't.

That is awesome and so good to hear! How long should that last?

Congratulations! I'm sure you will be a great grandmother. One door closes, another opens.

My neuro told me it was all trial and error until they found the right drug or combo. They want you to believe there is some science to this but for CPS I think it a mix of guesswork and they occasionally sacrifice a chicken to get the voodoo going. Praying they find something that works for you.

My wife knows that I always loved reading. I've been told that while I was in the coma she spent a lot of time reading a book to me. A lot of my reading these days is magazines which work well with short attention spans.

No, Jay. That's a big win. I used to have that problem, lost words or sentences, confusing e with o. Took about a year for me to finish a average size novel. Keep on, reading is a good skill but more importantly makes for good recreation during those quiet moments.

Do you use mainly plastic or metal cups like I do these days? I can mop up the liquid pretty well but picking up broken cup parts would be quite difficult. I have much experience at cleaning up messes these days. As long as we can laugh at ourselves we're mostly ok.

I used to get accused of walking very quietly, seems to have self corrected. LOL

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 train yourself to not use that hand as much. So, imagine my surprise a few days ago when the pinkie moved a tiny bit, not much but more than it has for over a year. I've been trying more for the last few days and I can now bring the ring finger and pinkie into contact with the other fingers when extended. The downside is that it hurts like the devil but I'll take that trade. In our previous lives probably none of us would have thought that moving 1 finger was a major accomplishment but it represents a year and a half of work for me. I have noticed that since I started having some control my clonus is more active on that side, trade-offs. I'll keep working at more control, apparently the doctors statements that after a year with no change my course is set is not entirely correct. It would have been so easy to quit and so many times I considered just surrendering that little finger but that would cast the die to start surrendering the next hard thing. We're survivors, we've been to the place most people will never know and returned, no refunds on the admittance fee but we can work it off. :thumbs up:

Following your dreams with the one you love at your side is what it is all about. Everything else pales in comparison my friend.

Sounds like the word got around about a party at Jay's place.

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 patience and a process that involves 2 hands and making a mess of my hands any 3 year old would love, it got done. Of course might as well check mine while I'm at it. Wipers are a different matter. I've always cursed them when trying to remove them and today was no different. I discovered that a lack of dexterity doesn't noticeably make the removal of the old wipers more difficult. However a lack of strength in your dominant hand does. It becomes a contest of wills and I'll never admit I can't change a wiper blade. Pull, push, find release tab then try pushing the blade out of it's holder while keeping the release depressed. Finally it moves and nice as can be, slides off the mount. Putting on the new blade isn't at all difficult, maybe because I'm feeling pretty good about my accomplishments. It's funny that I should be so pleased with myself for checking out the wife's car and doing some trivial maintenance but it would have been beyond my reach not all that long ago. One little step forward but it outshines the occasional step backwards.

Thanks Betsy We could get a secret handshake but we be afraid of hurting each other. But a secret society t shirt... LOL http://www.8ball.co.uk/forever-i-walk-amongst-the-ignorant

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 20-something acquaintances who perceives typing that slow as a sign of mental weakness. The "oh, you had a stroke" like they are talking to a child. Another who sees my aphasia as a sign that my intellect is damaged. Neither can comprehend the aftermath of a brain injury and the myriad ways it affects us. They can't comprehend that the guy who types so slowly wrote all the code they support now. But my brain is broken so it doesn't matter How could they understand: The hand touching my arm that feels like a branding iron while if you touch my back I would never feel it. The draft of cold air from the office A/C that feels like a mix of liquid fire and ice at the same time. Summer in Florida and I'm wearing a flannel shirt to protect my arm from a pain that only exists in my brain Does that sunbeam on your arm or face feel nice? To me it feels like someone flaying me, a pain they hopefully never get to experience. And the pain that spasticity causes my right side, I live on muscle relaxers, they wouldn't like the maintenance regime And the speech pathology, you know there is a word, there really is, somewhere but you can't locate it, you just stand there in silence seeking that one word. If your lucky another similar word comes along and you grab it like a lifeline. Over-stimulation. You never get to go to the movie theater again. 'nuff said So yes, I'm the guy who used to be smart but now is too stupid to talk right, can't type and if too many of you talk at once I don't understand. But know this, most of us didn't have our base intelligence affected by the stroke. We think differently and probably slower than we used to. You have direct neural pathways, ours are more like a construction zone with detours and bypasses to get from one point to another. It takes more work than most can imagine to get our thoughts flowing and to keep them flowing. And yes, I did write all the code that you my employee use to troubleshoot the network. But trying to educate you has proven to be an exercise in futility, I'll just be content to hope you never have to get on this ride, you couldn't handle it.

Heathber, Bad news is a relative thing. The past year plus has had doctors telling my wife I would make a full recovery. She now understands that what she/we consider a full recovery is different from what the doctors call a full recovery. I'd say I'm doing pretty good at this point considering where I started from. I have my deficits as we all do but I'm able to reason out workarounds, granted slowly, but I can function on a daily level with minor assistance. So the wife saw that as bad news but only because someone verbalized what we already knew to be true. Now I can yell I LIKE MUSTARD with impunity which had become a bit of a family joke about my sometimes over-stimulated brain and the confusion that can cause me.

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 my history and finishes with 'and your brain is a minefield of all the plaque that was in you coronary arteries before they knocked it loose.' This is going down hill fast... Then the zinger, For someone who has been through what I have I am physically very healthy. My cholesterol is 145 BP is high but controlled, all my enzymes and other lab measures are good or better. EKG has a barely noticeable extra pulse on it, doc declares my heart sound and assures my wife barring the unforeseen asteroid strike we should survive a while yet. Oh yes, the bad part. When he finished complementing us on my recovery I asked him a simple question that I'm used to getting very nonspecific answers to. "Given my recovery to date and the improvements I've made, can I expect my cognitive function to improve? I feel like I've hit the wall there." He looked me straight in the eye and said "No, that part of the brain is gone but it will keep trying to rewire and you'll continue to adapt". So I got a direct answer from my primary that all the specialists dance around. My body will continue to strengthen, even my spastic right arm and I will continue to adapt both physically and mentally. As I used to say in rehab when I could suddenly accomplish some task, "I'll take it."

I handle change quietly as it comes for the most part. Occasionally I remind myself that the doctors had told my wife I was unlikely to survive the initial event , but I did. Then I beat the 40% first year mortality rate and am mostly functional.So whatever changes come, I've seen worse and can still tell the tale.