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Stroke Survivor - female
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About tmciriani

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  1. Asha I'm so sorry how this has made you feel. I am going to tell you about my own similar issues with procrastination or avoidance which may or may not shed some light. When I went to college it was the first time I was in control of my own motivation and experiences. Well that is just a part of growing up and becoming a successful adult. What I didn't know is that I suffered with anxiety (mine is hereditary between all but one of the women in my family but anxiety does not take genetics to show up). Coping with anxiety when you don't even know you have anxiety can lead to procrastination and avoidance. Dealing with life decisions is a difficult thing...for everyone. When people with anxiety are dealing with life decisions it may trigger that stress and it is natural for people to move away from something that gives us this "stress" like pain. I know your son is brilliant and success is in his future. What helped me was cognitive behavior therapy counseling. I was 33 by the time I sought help this is after I had done this same thing (avoid, move away from or just nothing) and was depressed and knew that I had disappointed my family (especially my mom which is in no reference to you at all) and some of them felt I was just lazy. My psychologist taught me how to recognize this anxiety I felt and in doing so taught me new ways of coping. If someone has this kind of anxiety it is something that can be helped by recognition and behavior modification. It can help those moments that may feel unbearable due to anxiety that may cripple our decisions and actions and you learn how to push through and succeed. That in itself is empowering and it's like a domino effect...recognize...accept...push through using new coping skills...succeed...build confidence...take on new or harder challenges with success. Anxiety is not something to be embarrassed about or judged it can get extremely better with a little help. When I finally went and acknowledged for myself what I was experiencing I truly worked with my therapist to build new better coping skills. I was able to use these skills in my own life and I conquered so many things because of that. Unfortunately, now with my stroke my anxiety does not react to my coping skills but that is another story lol. Anyways, this may or may not be something your son is experiencing and if he is know it is no one's fault and there is a way to help. Don't take my story for an answer just an example of why I was procrastinating and avoiding important life decisions. I wish your family the best and hope you get some answers for your concerns soon. Hugs.
  2. I experienced a similar story when I had my stroke. Mine was a massive bilateral cerebellar stroke. I went to a stroke certified ER by ambulance. I couldn't walk, talk, had a severe severe headache, was throwing up violently non stop, had such severe vertigo...I told my adult daughter that I loved and was so proud of her because I was scared I was dying. I didn't find out until earlier this year that it all came out as moans not words. The ER nurse told my daughter I was not cooperating with medical staff...duh because I couldn't. I don't have memory of the hospital. I was sent home in less than 48 hours. The doctors couldn't decide if it was labyrinthitis or a rare migraine. So they sent me home with migraine medication. I was not diagnosed for 2 months. At about the 11th month I called multiple lawyers and no one would take my case...because it wouldn't win a lot of money. So I'm not sure what my answer would be to that question. I was told that misdiagnosis was more common than expected.
  3. Jay that is great news! I think your poetry is really uplifting and deserves to be published. Congratulations!
  4. Eric it's nice to meet you and I as well think you are doing really well. Patience is definitely a virtue when it comes to stroke recovery. I would just say to work hard in therapy, keep thinking positive, and enjoy your life. This is a great place for emotional support, advice, educational information, and so much more. There is a chat schedule for survivors and also for caretakers as well as a place to blog and a great forum area with many subjects to read and post to.
  5. I Am Long winded Lately LOL

    Boy, I have read back through some of my replies lately and wow I have had a lot to say. I am going to call it passionate response. I am so happy that I have an outlet with Strokenet and now another with my local stroke group. I have a lot to say and have a lot of thoughts that I can be really passionate about. I sometimes want to do more...educate others...help improve medical therapies...bring light to subjects about stroke that seem to be put on the back burner. I know I am extra passionate about the type of stroke I had. Also that I am 45 (42 when I stroked) and looked over because of my age which played a part in not being diagnosed until 2 months later. Statistics say that in a research group of 2000 consecutive cerebellar stroke patients (1987) had a mortality rate (23%) almost twice that of cerebral strokes (12.5%) and brainstem strokes (17%). These of course may be different now 20 years later. But it shows you that cerebellar stroke is no joke. Part of the problem is the difference in cerebellar stroke symptoms and the problem with missed diagnosis. I think about this when I think back to my missed diagnosis. I was sent home in less than 48 hours of having a massive stroke. In cerebellar stroke the days after the stroke (1st week) are the most dangerous. The swelling in this area due to tissue death and damage can lead to serious and deadly impacts. Swelling and edema in this area can lead to herniation of the cerebellar brain tissue up or down, can obstruct the 4th ventricle causing direct brainstem compression. This can lead to deadly herniation of the cerebellar tonsils into the foramen Magnus. All in all this can lead to death. Phew...I need to shop. 😡
  6. The physical disequilibrium is called dysmetria of movement. The new studies from the past 12 years says that cerebellar stroke also causes dysmetria of thought. It has always been thought the cerebellum only effects smooth movement such as hitting a ball when playing baseball or getting up from sitting on the floor in a smooth balanced way....The muscles use muscle memory to do these actions in a smooth fashion. There is now a term called dysmetria of thought where the connections to other parts of the brain are affected and do not send correct signals. If you research the cerebellum then you know the cerebellum is a crossroads/highway to and from other parts of the brain in the cerebrum including the frontal lobe. This is where my Psychiatrist says a multitude of my deficits come from. It makes it seem like I had damage to my frontal lobe but in reality the neural connections are not talking to the cerebellum correctly. Speaking of which the cerebellum has more than 50% of the neurons in the brain. It makes sense that it is more important than originally thought. Ok after all my psycho babbling I am getting off my soapbox. 😳
  7. Kelli you know I have pictures of my own bruising due to falling. I haven't read too much to the positive if you have had a posterior artery infarct/hemmorage and experience these ongoing deficits. One young woman who has like a 7 year blog says that it has only improved on the outside but through her eyes and her own deficit recognition it is still a daily struggle. She says the daily over stimulation (visual and auditory) can at times be debilitating. She says she still to this day has a lot of post stroke fatigue. She also explains the stigma of looking "normal" and others judgement. It's an interesting web site ands I relate to so much she talks about. I also have read multiple posts about psychological affects after these strokes (just like me) and they cause exacerbation of this fatigue. The bad part is that cerebellar strokes only happen about 2-3% of all strokes and is the least studied and the majority of physicians (Neurologists even) still practice that cerebellar stroke only affects movement and balance even though there is scientific evidence to say different. If you have any symptoms of cognition or psychological problems they will tell you it's not caused by the stroke. BS!!!!!!!
  8. Maybe so Kelli. I have been reading a web site that has stroke articles and one of the articles has had huge response. It's about cerebellar stroke and that it's not all about physical balance. Many of those who wrote talked about their deficits (the kind of) being a real precursor to increased stroke effects and tiredness/fatigue. Just the kind of deficits can affect this because many of them are coming directly from the brain unlike physical deficits not that they don't cause fatigue as well...I know better. Does anything I'm saying make sense? I don't think I'm explaining very well lol.
  9. Scott I have thought of that as well. I don't just give into it all the time. Last year I went every other day to my local gym to hopefully increase my endurance and to decrease my fatigue. Every day I exercised I was at my fatigue limit. Every time I went home and slept. Don't get me wrong I truly believe in exercise and fitness...I just don't know that it has made an improvement in my fatigue. It's frustrating so I just try to keep calm and not stress over it (my Dr. says I should avoid anxiety and stress) but it sometimes gets to me. My hope is that even after two years post stroke I will have improvement in the amount of fatigue.
  10. I thought of this post as I watched the news tonight. A politician has taken " the fight against opioid addiction" as part of his political process. He exclaimed that millions of people in America are opioid addicts and that the blame is big pharmacy. I don't necessarily discount his claim I just worry how these political wars will affect those who actually need pain relief even if closely monitored by a Doctor. I am so lucky and thankful to not experience stroke pain or CPS and am not on pain medication. I read so many of you do and there are little answers except sometimes controlling the amount of pain to bearable. In my own experience I have dealt with a need for pain medication like when I broke my leg and when my back has left me unable to function (long term issues...surgery...degenerative disc disease...etc) and clear difficulty and fear from Doctors to treat me. Not to even mention the stigma that I have personally been affected by. I don't know what the answer is but I do feel there is a place in good medical care and the possibility of an opioid being prescribed. I see people such as this politician who to me are really focused on deleting pain medication protocol and a Doctor's ability to treat such patients. It angers me. I don't think deletion is the answer; I don't feel Doctor's should be afraid. I wholeheartedly believe in monitoring. I can't stand that those who really need pain control are corralled into "addict" labels. What about the word patient...what does that mean anymore. Please excuse my rant but it is how I felt as I watched this news story.
  11. I'm not sure but I do know I never had this kind of fatigue before the stroke. From what read stroke fatigue can go away pretty quick or stay with you for years. Who makes what list is a mystery to me.
  12. Scott I think part of my fatigue is medicine related as well. I take several meds that have a side effect of sleepiness, dizziness, etc. I suppose I felt this would subside after being on these meds for quite a while now but it is very reasonable to think maybe not. At least when you have them all together. I know I have to be on my meds it's either that or have extreme anxiety, depression and anxiety attacks again. I still get these sometimes so I could imagine if I were to stop my meds. It was necessary...Even my Neurologist said it was. This is helpful in preventing a recurrent stroke. I don't like it though. This really makes understand the "spoon theory" we talked about in a different thread. I think I will make a copy of this and share with my stroke support group. I think I will also share with my family which I never have. As for any resolutions...I am without any. I'm glad I'm not the only one that has this struggle not that I am glad that any of you have dealt with it.
  13. Ed it would be easier for me if I didn't have so many "monitors" around me to tell me how bad I am being. I don't have a good answer. I always feel so tired. I have been trying to get myself into a better sleep cycle but honestly it sometimes doesn't matter. I would say getting out and doing stuff helps but on occasion I am barely awake for it to be safe really. I'm not sure if it could be because of my anxiety and depression...it has been bad ever since the stroke although it is nothing like the first 6 months after. I worry about it being detrimental to my overall health...You know couch potato syndrome lol. I am even on medication for ADD which is a stimulant and still have the fatigue.
  14. Hi Dean and welcome. You have a really great attitude about the whole thing and I believe that can only help you in every area. Come on in it's always a pleasure to meet a good bit of optimism. 🙂
  15. Starting last night I fell asleep at 7:30pm without dinner and awoke at 12:30am. Ate something and couldn't get back to sleep until 3:00am. I awoke again at 8:00am took some of my medicine and then almost immediately fell back to sleep until my alarm woke me at 10:00am. I just turned it off and I guess went straight back to sleep. I then woke at noon and got out of bed and made myself eat something. Then I sat in "my" chair watching tv in and out of sleep while I was sitting. I then laid back on the bed around 2:00pm and I suppose fell asleep very quickly. I didn't wake again until 6:30pm. I truly got up at that time and did things like take the trash, clean the kitchen after unloading the dishwasher, clean the litter box, etc. I slept my day away. Literally. Does anyone else experience this?