Stroke Survivor - male
  • Content count

  • Joined

  • Last visited

  • Country

    United States

About scottm

  • Rank
  • Birthday 06/05/1958

Shared Information

  • Stroke Anniversary (first stroke)
  • Facebook URL
  • How did you find us?
    Google Search

Registration Information

  • First Name
  • State
  • Country
    United States

Recent Profile Visitors

2,690 profile views
  1. Lin he has written a few papers that are out on pubmed but they are mostly about dementia and 1 about nitrous oxide abuse induced neuropathy, of course the collected works of this forum would probably be a study all by itself.
  2. Thanks for all the feedback. I think between this neurologist, my PCP and the physical therapist I finally have a winning team. Yesterday I got something from the neurologists office and opened it with some trepidation, it was a prescription for some blood tests for vitamin deficiencies, some rheumatism genetic testing, and a couple tests to rule out lupus as a cause for the pain. It would appear his is eliminating other possibilities to determine the best course forward. And he took the time to actually call my PCP and have a discussion about my case, now that's an example of a doctor that really cares and isn't just going through the motions.
  3. My new neurologist has sent me back to PT. I met the therapist I will be working with 1 on 1 yesterday, she is refreshingly pleasant compared to the outpatient therapists I've had in the past and has extensive training and experience with stroke survivors. Her evaluation of my right shoulder pain was completely different from any other I've had. She did a lot of range of motion tests but the passive ones which no one bothered with before told the story. It turns out my right shoulder pain is not physical as several doctors and therapists, ortho and otherwise have pronounced but a part of my central pain syndrome. While most of my right side is involved my right shoulder is the worst because of the spasticity compounding the CPS. So next week we start rehab aimed at teaching my brain that not all signals are pain. I'm not sure how it all works but she discussed mirror therapy, some exercises and how we will work to reprogram my brain so it doesn't perceive all arm movement as painful. She described it as being similar to what I had to learn about sensations as an infant which is how I have often described PT myself, relearning all the stuff I was good at by age 2. I like this new neuro and she also spoke highly of him and how involved with his patients he is and she instilled a new sense of optimism that I've not had in a while.
  4. Good advice for you so far. I remember when everything was strange to me, even my own hands didn't always seem to be mine. I started out with easy things like vacuuming the kitchen floor. Exhausting at first but it started me getting reintroduced to our house. Then another room. Then I realized I couldn't find things in the cupboards so we had to reorganize them so that sort of forced me to think about things and find my physical limits of what I could reach. Laundry seems easy but most people don't realize how much cognition is involved. So I guess what I'm getting at is as Heather said, pick a task and just start doing what you can. Your caregivers may be concerned that you are over doing it, but that's really the point isn't it. Pushing back the boundaries be they physical or cognitive
  5. My wife and I went through a similar problem where she was afraid of hurting me. It was many months but we took it slow and the first few times were pretty clumsy on my part for obvious reasons but we managed to figure out how to make it work. Just take it slow and work into something that works for you both, it's there, you just have to find it, take your time.
  6. There is always Oak Island which has many claims to pirate treasure put there by everyone. Granted it is in the Canadian Atlantic. I've been following the history of that island since the 60's when I first red about it in a Readers Digest.
  7. Hi Steve, He is a board certified neurologist and according to my primary very well regarded in the Tampa area. She sent me to him specifically because of my CPS. I'd looked up the medication and know that one thing to watch out for is a sudden rash, doctor said if one appears to call his office immediately. The other side effects sound like my everyday medication effects.
  8. I submit for your entertainment - Abraham Lincoln: Vampire Hunter
  9. First let me say that all of you who despite my cynicism told me that I should openly discuss my pain with the new doctor were right. Thanks! Now to the tale...We actually got called back to the examination room exactly on time, weird I know, but a portent of what was to come. He showed up in the examination room while the nurse was still getting vitals and asking questions. He proceeded to start the exam with my stroke history, meanwhile his nurse is still asking questions about my medications. She finally left and he proceeded to ask more questions related to his previous questions trying to get more details and faster. I finally just folded and asked him to stop, that I was very confused and needed a moment to compose myself. Sounds like he was harsh doesn't it? I thought so too then he began dictating to his computer that he had been testing my cognition, my ability to communicate my memories, my ability to speak and and process information. He said he wanted to test me while I wasn't prepared to see how well I functioned. After that it was much slower and I was allowed to set the pace. We discovered I can't walk heel to toe without risk of falling nor walk on my heals, roadside sobriety checks are out for sure. He did a complete physical check of my nervous system, heat, cold, touch, pinpricks, strength, reflexes, you name it. He spent about an hour and a half with me. Never had such a complete exam. He had looked at my MRI's and CT's and pronounced that based on my hospital records he wouldn't have expected me to survive and that I did and am as functional as I am is something he can't explain, I shouldn't be walking and talking based on the damage done. Then came the question I had dreaded, "what can I do for you?" I'd already mentioned the pain and cold sensitivity and he had bumped up the temperature before we uncovered my right side. I asked if there was anything he could do for the almost constant pain and his response was "make it stop?" I said yes, he said no. BUT, would diminishing it some be a solution I was open to? Yes. That we can do. So they are now slowly taking me off the nortriptyline (he said it didn't work on CPS very well) and I spend the next 8 weeks titrating up on lamotrigine to see how I respond. Unlike the last neuro he says there are still several options to try. So, long story short, I think we got a winner in this fellow. p.s. - Another reason he said he wanted me off the nortriptyline was that it causes urinary retention and it would be embarrassing to be the doctor who prescribed something that caused a patient to need to be catheterized in the ER in the middle of the night when there were other solutions.
  10. I feel for you Kathy but Becky has the right of it. I've been where you are many years ago and that led me to my now wife who somehow still puts up with me. Let him go and move on with your life. I know that is trite advice but it is the only thing you can really do.
  11. As a general rule I will ask someone to speak more quietly or slower if necessary. Raised voices are a trigger for over-stimulation with me. If they comply then I can regain my composure and we can proceed. If they continue being too loud they get to see me put in my earplugs. Some get offended but the people who know me understand the situation and appreciate that I have a different set of processing abilities than they do.
  12. Strictly cash basis here. Just like the old days when it was illegal. Oh, wait...
  13. It's for real Lin. A cop friend told me about how they used to do that when they had to deal with some situations that had very unpleasant smells. All you can smell is the eucalyptus, a little goes a long way.
  14. My sense of smell is so acute now that sometimes it can make the food taste strange. Used to love shrimp, lobster,etc but now the smells are overwhelming. We are meeting a group at Red Lobster tonight, I'll have to put some Vicks under my nose, sort of like my ear plugs but for the nose..
  15. Does your dog belong on the board of a medical journal?