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  2. Jayallen

    happy Dance

    Every year I have a CT with contrast, It was scheduled the day after 2019, on 01-02-20, I received a call from my neurosurgeon's office, I got a clean bill of health, the only recommendation is a follow up CT in one year
  3. Wow, what a story. And I so appreciate the positivity your post encourages. We've been told he'll never walk, never talk again...and maybe he won't. And that is really hard for me to wrap my head around and at this point (three months now from his stroke) I refuse to think that he won't at least have some recovery. Good luck with your writing and keep making up for lost time with speaking. Enjoy every single word you speak!
  4. Sorry I have been consumed with writing a few different books, helping 3 other prepare their book for publication, all non stroke survivors, one has a book on Amazon right now, I'm so glad I am here and able to help others. I had brain surgery and was in a coma for a month. Some stories have been shard with me, for example; my wife told me while in ICU they planned to take me off the ventilator. I would be unable to talk. The first thing I said was cover me up I'm cold. She re[lied "don't think you're going to boss me around, now. I said, I learned that lesson years ago. The nurses burst out laughing. My wife told me, much later, that smart comment told her I was still in there and I was going to be Okay. I too didn't lose the ability to speak, although some may wish I would have, just joking. I know a few survivors that lost the ability to speak, but with a lot of hard work and good speech pathologist, both have regained the ability to speak. I joke with one man, that he's making up for lost time we can't get him to stop talking now. It's a long journey, everyone is different. It won't be fast or easy, as you well know, but the improvements are still possible. I'm six years post stroke and I am still seeing improvements. Most people can't notice , most are cognitive Best wishes to you and your son. Peace and love, I'll keep you in my prayers. Jay Allen
  5. Today
  6. Had two back to back strokes on 9/08/08 due to a carotid dissection (ischemic type).
  7. HostAsha

    OMG Ryder looks so cute & big now time flies still remembered him as baby,now looking like toddler enjoy him & be sweetest & coolest mimi that you are Asha
  8. Welcome to StrokeNet. Please feel free to browse around and then introduce yourself by posting in the the Newbie Stroke Survivor or Stroke Caregiver Introduction forum.  After that, post your question in the applicable forum and others will reply.  You will quickly get to know the others. If you have any questions please don't hesitate to ask.

  9. Yesterday
  10. Welcome to StrokeNet. Please feel free to browse around and then introduce yourself by posting in the the Newbie Stroke Survivor or Stroke Caregiver Introduction forum.  After that, post your question in the applicable forum and others will reply.  You will quickly get to know the others. If you have any questions please don't hesitate to ask.

  11. Will, my day job is a magazine publisher for my community and as a writer myself, I have to hand it to you for your compelling words! What a picture you paint...and how terrifying! Your story does instill hope in me for a better than expected outcome for my son. Who would dream that someone who went through the events you experienced would ever be able to write so well? Thank you so much for your continued prayers and encouragement and congratulations on your own accomplishments. You have come a long way and you are a true inspiration for others.
  12. I can add my similar experience with this "locked-in" state. The morning my aneurysm ruptured, I awoke with an extremely bad headache. The previous day I spent over 9hrs of tests at the hospital. The final test they wanted a spinal tap and it was already after midnight, so I pleaded with them to just let me go home and I'd return if my headache resumed the next day. Finally they released me with a prescription of vicodin for the headache pain and my wife and I went home. The next morning the headache resumed and I got up and took a pill and called in to work sick. When I laid my head back down I guess as the blood rushed to my head the aneurysm ruptured. I never got my legs completely onto the bed and was stuck in that position with my body half way on the bed. The way I described it to the Neurologist was it was as if I was locked inside a large vault with the door closed. Everything went dark and silent, I could not move a muscle. I felt nothing and was stuck half on and off the bed. I had a suspicion that an aneurysm erupted and got out enough words to have my wife immediately call 911, I knew that without treatment I wouldn't make it. What an awful feeling, and one that I thought I would never experience. I had always felt that given a life or death situation, be it an accident, or imminent death experience that I would handle it a bit more different being faced with it. More macho or manly and calm I guess...I was completely mistaken and for the first time in my life I faced a child-like fear that I was going to die and terrified. It's testimony to fact that how you think you may react in a given situation may not be how you do when faced with it in reality. Anyway, to make the story short I was finally transported and by the time they got me off the gurney and sitting upright in a chair I felt a very sharp stabbing pain up the back of my neck and lights out. The next thing I barely remember was it was nighttime and I was being loaded on a helicopter for transfer to another ER for endoscopic brain surgery. This ER stabilized me drilled and installed a drain in my scull and intubated me for transport. From the link description of a "locked-in" experience, my description of being locked up in a vault with no feeling, silence and paralysis are almost identical in experience. What a frightening experience, terrifying actually. Never in my life anything like that ever happening and it's imo the closest thing of an out of body like experience you could have without actually passing over. I'm sorry Patti that I cannot ever give you anything in my experience that relates to a coma, or coma complications. I can just add that like so many here with many similar stories and experiences, it took a lot of time, patience, and hard work over the next year to relearn to walk, eat, dress and develop work arounds to get some semblance of normal functioning back. Even post stroke/surgery at 13yrs now and being almost 68yrs old, it's ups and downs and challenges, constantly. My strongest attribute these days is my faith, and my belief that there's reasonable time enough on the clock for more improvement. I'll not give in, or give up. I feel that a strong supporting cast is paramount in rehabilitation, be it family, friends, faith and courage. My biggest supporter is my cat whose companionship is unconditional and always keeps me going caring for him. It's the simplest things you could imagine that may be taken for granted that mean so much these days. I'll remain in faith for James, for you and family. Even those small tiniest improvements are monumental in early stages of recovery of his condition, and slow as they come, things will get better in time. I wish you the best in the New Year.
  13. Hi, Becky! Thanks so much for your posts. He has been off the vent since the week after his craniotomy (sp) in October. He breathes very well on his own. He does still have a trach (but it has been downsized from an 8 to a 6 so that's good I understand). He is opening both eyes now and for longer periods and moves some limbs on his own but we don't know for sure if it's voluntary movement or not. So there has been some progress and we are very hopeful for more. So, in conclusion, and especially afteer a little research, I don't think he is locked in either.
  14. Patti, I'm not a doctor or a medical anything, but it doesn't sound like he's locked -in to me either. Is he still on the vent, or did they leave the tubes in "just in case"? There is a place on the vent where all of the controls are which tells you if he took any breaths on his own, and how many. If he's still on the vent, get his respiratory therapist to show you. As the coma becomes lighter he should start taking more breaths on his own. They will not remove the vent until he's taking enough breaths on his own to sustain life. Watch that number! This won't happen overnight. AND HOW LONG IT TAKES CAN vary for each person.When it comes to strokes there are no guarantees, and this is no exception.BUT IT MA Y GIVE YOU SOMETHING YOU CAN DO TO CHECK HIS PROGRESS. Good luck, Becky
  15. ksmith

    1 year old soon

    Thanks Sue for the push to write. Blogging has always been hard for me. The words don't always make it from my brain to my fingers. HAHA. Some would argue that the word don't go from my brain to mouth. I would have to agree with that one. I never seem to have something to write about for the thought doesn't stay in my head long enough. But I'll try: In March, my mom and I are driving to Florida, via North Carolina to stay with my sister and family. I was going to fly but it was going to be costly. It will be my grandson's first birthday. I'm excited to go and see him. My father, drives an activity school bus now that he had retired from teaching, and used all the money he earned and booked us a room for 7 days. I am beyond being u[set not seeing him as much as I would love to but I know I'll be the coolest Mimi ever. That's about as far as I can think of writing. I'll have pictures for sure
  16. ksmith

    blogging is such a fantastic way to get all your troubles out or just spreed good news :)
  17. Last week
  18. Patti, you are correct. I must have forgot all he could do
  19. I don't think he is locked in...he is making some grunt sounds (he does still have a trach) and he does open and shut eyes and move limbs on occasion. I did watch the movie "The Diving Bell and the Butterfly". Interesting but a sad ending unfortunately.
  20. Patti, There are 4 levels of a coma, with #1 being the worst, or deepest. THE PERSON AT this LEVEL CANNOT talk or move in any way. aS THE A COMA BECOMES LIGHTER, YOU may SEE MORE PURPOSEFUL MOVEMENT AND SEE/HEAR more attempts at speaking. You may not see any of this from a person who is locked in, because they cannot move. They can hear but can hear, but not respond.
  21. Thank you so much for this link! I found it fascinating. He is making some noises, so after reading this I'm not sure if he could be locked in but I found all the links and studies very helpful!
  22. Most people, that I've read about, who are locked in are unable to move, speak. Here is an articles talking about it https://rarediseases.org/rare-diseases/locked-in-syndrome/ https://www.theguardian.com/world/2012/aug/07/locked-in-syndrome-richard-marsh ( with video) There is a brilliant movie called " The Diving Bell and the Butterfly" that tells a story of such a gentleman.
  23. ksmith

    That is fantastic news. Keep up the great progress!!!!!!! Congratulations
  24. Hey guys kinda quiet in chat today it will be open for 40 more minutes. 🙂 http://www.strokechat.net/
  25. Deigh

    Since it is eight years since your stroke you are doing well to continue to improve. There are a lot of people who believe that improvements will only happen for the first year. You and I are proving them wrong. Deigh
  26. KevRider


    The best laid plans of mice and men! Well my new year intent was sabotages by a bout of nasty flu. It attacked my muscles and they ached terribly. It even affected my walking and it felt like I was going backward. On3e night of heavy blankets and sweating and the fever broke an by Thursday I felt better but was washed out energy wise so I decided the better path was to rest and recuperate so cancelled Yoga and Gym. I also had a presentation scheduled for Sunday and wanted to conserve energy for that. Monday felt sufficiently well that I returned to gym. Im trying to regain some stamina I can manage 9 Mins on the elliptical followed by a circuit of weights. I m incrementing it slowly and Im a long way from the 45 mins and weights I used to do. I may never regain that but Im still pushing for it all be it slowly. Reduced exercise and eating out hasn 't helped the weight loss but theres always the coming week! Wed: in bed with Flu THr: took it easy Fri: took it easy Sat: travel to Phoenix: ate out Sun: Presentation . second since stroke Mon: Back to Gym Tue: Acupuncture Weight 182lbs
  27. KevRider

    Nice to see you progessing. Hope you get more in 2002. With repect to the last post my left foot would toe drag then my therapist did some major stretching of the calf on that side, which helped greatly. Seemed the calf had tightened due to lack of use and was actually pulling my foot down.
  28. becky1

    loulabella, When a person has a stroke, both the survivor and caregiver may go through a grieving process in which they mourn the loss of the person who existed before the stroke, and the life that they had before the stroke. This is very normal. It is also normal to feel a range of emotions including anger, fear, and resentment. To try to give you more specific info., we need more specific info. Like what is it about your husband you are trying to understand? Becky
  29. PaulNash

    Woo Hoo! That is great news!
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