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Stroke Survivor - male
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About scottm

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    Senior Mentor
  • Birthday 06/05/1958

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  1. I'm at a loss for words Pam, I can only say that you are one of the toughest and bravest people I've ever known. The whole landscape of pain management has been turned on its head and we are the outliers now, the odd cases the doctors dread to get because there is no healed. The lawyer Becky mentioned might be a good idea. You have much steel in you and I greatly respect that. Be strong my friend, there is always light to be seen even in the deepest darkness if you look for it.
  2. I often struggle with that myself, mostly I find I can better order my thoughts by writing (typing) them them out. Then I have a punch list of things to do. Doesn't mean they get done but I have a list of what I should do. Some times though I just accept the don't wanna.
  3. I've had that reaction in the past when intubated.Especially if there was a bronchospasm, seems we sort of bruise the vocal folds in our airway, also if you had a trainee tuber, they can take a few tries. That's how it was explained to me. Popsicles and/or ice cream help. Actually anything can be better with ice cream.
  4. Looks like they changed the name and dressed up the site but it is the same Etanercept ummm therapy that has been being touted as a miracle cure. I'd suggest you discuss it with your doctor.There are no easy roads for us, we all have to work our way back. That said, you have a group of fighting caretakers and survivors who can try to help and are always here.
  5. My initial constant brain fog lasted about a year then was easily triggered for another year and a half. Finally after 3 years it has settled down but it can still be triggered in noisy or overly brightly colorful locations, such as a grocery store. That makes me wonder, if someone was marketing directly to the brain injured would they do better with grays or just pastels? We just have to function at our own pace and others have to accept they we have a serious and potentially lifelong injury, even if it isn't visible. It will change over time and 2 years was when it became noticeable to me how much I had improved.
  6. I don't yell much, in fact people usually have to lean in to hear me. But make me ask you to stop talking or making noise more than once and the overstimulation effects take control and I can start to lose control a bit. Just one reason I live in earplug seclusion. I made the pharmacy aware of my problem and they accommodate me including speaking slowly if I get confused. I've learned to use the ADA to make people deal with me on my terms where my deficits are concerned.
  7. Been on this new dose several weeks but it has been worse the last couple weeks. Neuro say call him in a couple weeks and give an update.
  8. It feels like someone tuned my brain between 2 AM stations where there is just static. Can't form a clear thought, very disorganized and tired. Maybe it is the Cymbalta dosage adjustment doing it but I don't enjoy it at all.
  9. CPS

    Greetings Megan. You are correct that there is no cure, but there are treatments. If you have a neurologist or local pain specialists there are several things they can try that may help. The real issue is that it is a trial and error for each individual. It took a couple years to find a medication that worked which ended up being cymbalta for me. Still playing with dosage as too much makes me very sleepy and dysfunctional, a capsule less and i'm awake but in some level of pain. That said, your results will likely be different than mine and the process is very time consuming as most of the drugs they have to try take weeks to months before they reach full effectiveness, or not. But there is light down the tunnel and several of us here are very familiar with what you are going through.
  10. In general I don't talk about it and several friends have observed that while they can tell I'm done and make allowances for that they have no idea what it feels like to me. Of course there is the other end of the spectrum who say they think it must be like when they've taken $DRUG, yeah, sure, that it, lifetime buzz... I will go to my son's 30th birthday party next week, wearing earplugs and sit quietly in a out of the way corner.Yup, isolation is the word for things like that.
  11. Yesterdays session didn't end well. First I messed up on the divided attention exercise then we discovered I had forgotten how to multiply. I couldn't remember how, when to carry and what to do with it. I wanted to cry I was so frustrated. 18x4 isn't exactly complicated but it outwitted me. I did have an insight last night as the wife and I had dinner and our weekly desert on pie night at the local diner. I realized while explaining to my wife my epic fail that perhaps my visual response to too much at once is like my reaction to sound and I just can't filter and separate the components. Essentially I see everything at once just like I hear a collection of sounds as 1 sound not collections. It produces a similar disorientation and lack of ability to process my surroundings. I'll try to remember to bring this up nest week.
  12. Thought I'd do an update. First I like the therapist, very friendly and patient with me. I'm still struggling with numbers but she has had a few insights for coping stratagies that seem to help. We both have no illusions that I will be doing serious math again but I should be able to handle +, - , maybe X probably not division. That part of me is likely gone for anything beyond very basic. For the time being I'm OK with this. She does like to remind me that things go slowly at this point post stroke. I know that but it sometimes frustrates me when I can't add 7+9 and get the right answer. As she put it, I'm not dumb, I'm injured.
  13. When I sing the buzzards begin to circle.
  14. My primary sent me to an ENT to see if they could figure why my voice did that. They found 2 related issues, on my affected side the vocal cords were partially paralyzed. They also found that my control of the cords was erratic and they would slam shut after each word except the paralyzed part which caused the horseness and soreness. Took about 10 minutes with a fiber optic camera to see what was going on. No fix other than speech therapy which she said probably wouldn't do much for it anyway. YMMV
  15. I never felt this tired before the stroke. Maybe it made me more sensitive to some medications, My wife seems says I'm very sensitive to medications now.