Jump to content


Staff - Stroke Support
  • Content Count

  • Donations

  • Joined

  • Last visited

  • Country

    United States

Posts posted by HostTracy

  1. 1. When I had my stroke/symptoms: Serious Central Vertigo 24/7 for many months. Daily nausea, vomiting. Nystagmus (both eyes). Severe sensory overload. Severe PBA. Severe Post Stroke Fatigue (slept 80% of the time, only up to use a potty chair and to try to eat something at first then after a couple of months to the bathroom and up about 5 minutes at a time a few times a day. Aphasia. Severe lasting headache daily. Severe defecit in proprioception. Ataxia, dysmetria of movement, thought, emotions, everything. Unable to stand or sit upright or hold my balance. Movements were very slow, fingers didn't grasp right, intentional tremor, my voice became a whisper, wrote very small and could only do for a short time and it was chicken scratch, speech slurred, couldn't follow verbal or written directions very well at all (got them out of order or forgot them or left some out or just didn't see it). Lots of Cognitive issues, defecits in executive function, trouble with metalinguistics, visual spatial issues, trouble with mood regulation, issues with working memory, everything in my world moved even if it was stationary (at least that is what my brain decided). Cerebellar Cognitive Affectice Syndrome. Cerebellar Stroke Syndrome. Psychiatric issues. Severe anxiety with panic disorder. OMG too much...my brain hurts. 

    2. Most defecits and symptoms have improved a lot especially the 1st 6 months. The nystagmus went away. I was not diagnosed during my acute stroke even though I was rushed to the hospital by ambulance (2 months BEFORE diagnosis and any treatment or therapy OT, PT and ST.). I had a very rare stroke. Today on most days I can walk, talk, use all 4 limbs, drive and maybe just looking at me you might never know. Every defecit except Nystagmus is still there but I have learned to compensate many. My defecits change daily or even several times daily. I have good days, bad days. Anything that stresses or tires me will increase my defecits and their severity. I still have a lot of Psychiatric issues and see my Psychiatrist every other month and have Cognitive Behavior Therapy weekly. 

    3. A little over 4 years ago... 7/5/15.

    4. Massive Bilateral Cerebellar Embolic Infarction in the PICA region. (Posterior Inferior Cerebellar Artery). 


    Mark I'm not sure if this makes sense and I'm too tired to reread it because I wrote a book lol. 🤓 Say hello to my little brain. 😒

  2. Alan I feel that it is very normal to carry sad feelings and you miss things you enjoyed before and either enjoy differently or possibly can't enjoy now. I feel like it is a healthy part of grief. Mindfulness can be very positive going forward. 🙂. Happy Strokeaversary! 🤗

  3. Again I feel the same as Heather. Communication can be a huge bump in the road after stroke for both survivor and caretaker. With the suggestions of the Dr.'s who are very familiar with stroke it's possible to find therapists and Psychiatrists who have experience with stroke and it's sometimes very confusing after effects. 🙂

  4. I agree with all of you. A good Psychiatrist will give you tools and encouragement to face what's in front of you. Unbiased ear, unbiased information, unbiased acknowledgement, unbiased tools to seek solutions and help one deal with their "things". In your case I feel it very important to do some therapy together maybe even first before individual therapy. The human mind reacts in so many unusual ways when a person feels fear, feels out of control, feels helpless, feels unsure. The fear of not being enough anymore, not loved, not needed, defective...its so strong, painful, so scary. I know I've been there. I accused or was paranoid of my ex leaving me, not loving me, cheating on me, not wanting to be with me anymore. It gave me so much anxiety I felt as though my head would explode, my heart would explode. I could not control my thoughts and fears. They were like nightmares I lived in. I said things that were hurtful, I was not nice at times, and exactly like Kelli said I couldn't get out of my head long enough or well enough to think honestly and clearly or even with gratitude. Today I see all that I missed and was blind to. I see how it hurt my loved ones. I am wholeheartedly grateful for all of them. Before, I was physically damaged...my brain could not work like a brain should work, understand. I could not feel or control my emotions like those around me could. I did not make it easy to love me and take care of me. Something I know is so just wrong...regardless I was not in control. Reassurance was vital. I needed it like I needed water. I needed it over and over and over because the devastating crazy fears came back over and over and over. Again...it was so out of my control. My Neurologist said I should seek therapy but they never say you both need to seek therapy. You both are victims! So how do you navigate through this storm! Ask for help...for you both, for your relationship, for your marriage, for your love, for how to survive this threat. Your is both of you. Ask yourself "Do I want to lose what I have made, shared, become because I am tired and don't know what to do? or do I want to find what may help myself and my spouse to feel safe, reassured and hopeful?". It's unfair, the weight is uneven, you have to carry the other right now. It's not easy... It will affect you...you will not escape the stroke's reach...your wife is in it's grips. I don't think it will feel fair to you at all. I know it will not feel fair to her. There is someone who can help you and your wife. It may be up to you to seek that out. I'm so sorry these choices all seem to fall on you right now. We carry those we love when they can't walk alone and they carry us when we can't walk alone. Is your (you and your wife) love worth it? Remember your love before the stroke before you answer that question. I pray that like so many I know personally, that in time your wife will allow the love given to her, that she will know how grateful she is and that she can give her love back and not be terrified. Sending so many prayers for you both. 

  5. Sitting here rereading all the posts and I feel such a loss for words. I am so sorry Jim. You have been doing so much to help your wife, to feed her spirit, to show and give her love. Your wife is so lucky to have you in her life. I'm thinking of you and am sending prayers and a kind ear your way. I'm so sorry for your pain and frustration. I think I understand why you feel guilt but I want to say that I don't feel for a moment you should. You really can't "make" someone be or do or have motivation and I don't think it is for lack of trying everything you can. I still think you guys could have more answers and assistance but Heather is so right. You can't help someone who is unwilling to help themselves whether it may be depression, stroke defecits and changes. I can only imagine how so frustrating your situation is. I hope you you take a chance and really find ways to help you to navigate through the process and help to deal with how this affects you emotionally and physically. Be good to yourself, take care of yourself and please know I'm here...so many are here to give our support. Sometimes just listening can help. I know that's what I need sometimes. 😒 Sending you best wishes. 

  6. Absolutely agree Becky 🙂! Jim we hear you. Happiness is a journey that starts with yourself. Neuropsychogical testing would be very informative and helpful to your wife and for you. The unknown is how much of her behavior is she in control of; what treatments, therapies, medications, etc. could help; can there be improvement and are either of you experiencing depression and need medication/therapy. I also very much agree that you need to seek mental health support or rather more support in general. Anyone in your shoes would more than likely need the same thing...your wife as well. 

  7. Hi Jim my name is Tracy. I am very sorry you and your wife find yourselves here. I can hear how much you love your wife and I can hear how frustrated you are and can sense your pain. I, in every way, admire every caretaker. Caretaker to me is one of the toughest positions to be in. It does sound as though your wife may be experiencing some depression and definitely at the very least lack of motivation. These things can be caused by stroke itself. Stroke can be the cause of so many emotional, behavioral and physical things (including being fearful of losing her husband) for the survivor.  For you, I can see how difficult and sometimes maybe even hopeless you feel. I suggest that you speak with your wife's medical team to ensure your wife is getting all the help she needs and that her needs are met at this point. I also feel like you, the caretaker, need to spend time and effort on yourself. Plan this time, make it a priority, make you a priority, rest, be good to yourself, seek therapy if you need...caretaker burnout is so real. You need to recharge. It will help you to have a clear mind, have energy, to have patience, to seek new or different help for you and your wife, to have more stamina for your very tough position. Taking care of you will help you to be able to be a caretaker for your wife. You deserve this self care. I wish I could just give you "the" answer. I feel that with more support for your wife's issues through her medical team (Neurologist, PCP, Therapists, or any other member) finding things that may help would/could be so good for both of you. Hang in there, take care of you, get help for you (I can't think of anyone who deserves this more than a caretaker and who he/she takes care of). ☮️❤️

  8. Sue I truly feel you are very right my friend. Some call it karma, circle of life, love...no matter it comes back to you. Beautiful souls choose to see through the rough stuff not to ignore it but because they know the rewards once past. You dear Sue are a beautiful soul. 


    Paul, I don't feel what you say is incoherent at all. Sometimes life circumstances prepare us for what is likely ahead. Sometimes we just don't end up on the "likely" path. Not too much prepares us for those instances. It is very hard to shake what has been engrained in you your whole life. You just know something doesn't feel right. You learn how to navigate on rough waters. You learn that this world is not black and white. The gray is /has always been a force. May your path lead you to a positive light. You do serve others when you allow others to serve you when you need this. I don't see it as a moral failing but a righteous path. As hard as it is and I know it's hard, you can define you. (((HUGS)))