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Staff - Stroke Support
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About HostTracy

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    Senior Mentor
  • Birthday 12/02/1971

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  • Stroke Anniversary (first stroke)
  • Interests
    Improving my organizing and planning skills, spending time with my cat "Kitty", spending time with my family, being involved in my local stroke support group, the brain, and giving support to other stroke survivors or anyone that i can.
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  1. HostTracy

    Look up hemiplegic migraine Janelle. I'm not sure if your headaches in any way resemble this but if so then you can ask your Dr. about it. May be helpful.
  2. HostTracy

    Thank you so much Janelle. Those are meaningful words to me. 🙂 I have made it a struggle for a long time...since about a year after my stroke I made a decision that I don't want to do that anymore. Time to heal that wound. Janelle, my friend, your heart is massive! ♥️
  3. HostTracy

    Janelle I very much relate. I have gained 60 lbs since my stroke. Lost 12...its a daily struggle. I am exhausted every day. I have sort of come to terms that I'm not going to join aerobics anytime soon lol. But I do try to walk. I can't walk outdoors during the summer. I have asthma and just having the stroke doesn't allow me to tolerate the heat and humidity. My goals have been to eat whole foods and no packaged foods. Try to stay away from sugar. Nothing has been clearly a winner. I am just 80% less active than I was before. Already had extra weight then. I worked 8 hours a day on my feet running around like crazy. Very fast paced environment. My new goal is to work in broken up time. My Psychiatrist wants me to concentrate on trying to work up to 30 minutes of real exercise every day. It's OK if it's 10 minutes at a time. This is for brain health and to help my cognitive decline from continuing. I am in a moment where I am really working on loving me no matter. For my health I know extra weight is not good. I realize though I may not be able to improve that to my satisfaction but can continue to improve to where I can make progress in my health. It's hard for me. I was the skinny, healthy teen and young woman. When I started to gain weight with no change in foods I was finally diagnosed with PCOS. This makes gaining easy and losing hard. So I'm just going to learn to love my curves. I have to 🙂
  4. HostTracy

    Benni great to hear from you. I as well as others don't like to be on the getting my picture taken side of the camera. I wish I had something to add but I can only think of selfie stick too. I have intention trimmer sometimes. So if I am working hard to concentrate on taking a good picture my hand shakes...grrrr! Needless to say I have a habit now of taking multiple pics of the same shot and pick out the best one. At this point I don't think I ever take selfies anymore haha. I am fluffy. After having my stroke 4 years ago I've added a cloud or two from lack of activity. I used to be extremely active at my job. Losing weight is my nemesis. I know I need to but it is absolutely the hardest thing to try and do for me. It doesn't help that I have PCOS which makes it hard to lose weight. BIG STRUGGLE to accept my fluffy. Singing in my head and shaking my tush: "I'm bringing fluffy back!".
  5. HostTracy

    Happy Birthday Gary!!! Such inspiration! I am also so glad your daughter is home after such a difficult and scary time. Prayers for her continued recovery and for family strength. 🙏
  6. HostTracy

    Ruby it is my pleasure to meet you! I love your name... My late grandma's name and my adopted sister's name. 😊 Such wonderful people here full of support, acceptance, information, their own stories, who look forward to touching another's soul like they experienced (I feel I can say that honestly). I can't wait to get ty o know you better!
  7. HostTracy

    I can't agree more! I have not named the amount of spoons i have each day. It's all relative. I can promise you though my mind thinks I have a lot more spoons than my body and brain do! Accept what you qualify for and really use those precious spoons on the things that bring you joy! 😊
  8. HostTracy

    Sharing the giggle! 😄 My daughter gets all her bad traits from her father. Whet n her and I are out together people say or ask "Are you guys sisters?". Of course my 23 year old is appalled I just remind her that it means you have good genes from your mom... "You will grow old gracefully! One day you'll thank me for that". Haha
  9. HostTracy

    I want you all to know regardless of emotional whatever... I am so proud to be in my own place. This has been a long hard battle and I did it! Nothing will take that victory from me. All of the "other stuff" is just coming from my particular disabilities after my stroke... Don't worry I have not forgotten that I am a fighter and can kick some stroke butt lol. Janelle Kitty is still my point of solise. She's on my chest right now making biscuits 😊. Living by myself is opening the hidden doors I keep. There is a lot of quiet and my mind takes advantage. I think it is good. I realize so much that I have a lot of inner healing to do... Not just being a stroke survivor. It is exhausting, locking away emotional pain has only been a bad thing for me. I'm doing some spring cleaning...a very needed task. I just want to say I think so much of each of you. Positively an extension of my family. Haha see I'm a blubbering mess... I'm going through a very emotional sentimental time. I love you guys. ❤️
  10. HostTracy

    The Chapter is Beginning

    Well I am finally in my new home...well new for me. Still getting settled. I've met a very kind and smart doggie he is a chiwuawua. He comes to visit me if i'm outside at night sometimes. All I have to say is "Go home." and off he goes. My neighbors on the other side of the duplex do not like me i dont think. I had some issues with the parking situation when i first came. It is just one lady that lives there she is mentally challenged and requires assistance 24/7 so there are always at least 3 extra cars around the area. They were parking in front of my house and in front of the mailboxes. I don't do well on uneven surfaces so going to the mailbox was scary (on a hill). Anyway, I talked with my managing company and they told me everything was against the "rules" that we both signed in our leases and they would take care of it. They contacted the ladies' employer and when that didn't work they contacted their boss and then their bosses boss. The cars are no longer parking in front at all. I live at the end of a dead end street and have a full side (paved) for plenty of parking. Anyway, I don't think I am considered a great neighbor. oh well. I'm really very nice. For the first week my daughter stayed here with me as she waited to move into my room at dad's until i had the carpet cleaned. She said it was to help me unpack. I absolutely love my daughter but we press each other's buttons and are each other's triggers. We can make each other have a panic attack. I have slept here by myself for the past 3 nights and I have needed the rest mentally and physically. Kitty loves it here I think. She is playing with her squeaky mouse a lot and has 2 places to sit and sun and look out either the front or back window. I'm planning on getting her interactive puzzle things that she can play with and get a treat. She has become less active and her vet said she was a senior kitty. She is approximately 10 years old. She is my baby. I'm so glad we are here together. I went to see my Psychiatrist this week on Monday. I really needed to see him...everything cognitive has gotten worse and I have been having panic attacks often. I told him I feel it is all the stress of the last two months and the stress of the move or at least I hope. He talked to me for some time about the kind of stroke I had and everything I have noticed. He brought up a word for the very 1st time...and it is a word i am terrified of...Dementia. In 6 weeks when I go back and things have settled a bit he wants to do testing for cognitive and memory things. He wants to get a baseline. His concern is not that I can be diagnosed with that now but it is possible in the future. It's different from Lewy body dementia...alzheimers. It happens over a very long time...the changes...and usually not complete. He told me he has been to seminar recently on the very subject and what science says is that there has been a problem in the past with diagnosing this. Many have never been diagnosed until it was too late and an autopsy was being performed and they found the brain changes. The best thing to do is keep a watch...get a baseline and hopefully will never need to use it. He also said eat whole foods as much as possible, no boxed or manufactured stuff. Eat organic when you can. Reduce sugar intake...especially refined anything. The number one important and most helpful factor is some form of excercise about 30 minutes per day. No need to kill yourself but don't doddle either. Science says that is the #1 way to reduce your chances for cognitive decline. I already have cognitive decline so it is especially important for me. My stroke continues to leave me with a lot of cognitive deficits. It's a lot to think about. I'm trying to keep my mind busy and my body. I've been so tired. I'm trying to keep myself in check and get out of the house even for a little while. Reduce the urge to be alone. Believe it or not it is an urge. Life is exhausting to me. People are exhausting to me. Places are exhausting to me. Sounds are exhausting to me. Smells, sights, thoughts...everything sensory is exhausting to me. My urge is to avoid, but it is not what I should do. This is so frustrating. My house is perfect, however. Two bedrooms, a great kitchen, a patio out back, a porch, really cool shelves with doors located between the wall joists, a storage room you get to from the back outside, my washer and dryer fit but I do have to leave the folding doors off that normally closes the area. I'm glad mine are actually nice looking and compliment the decor. I'm going ahead and posting this unfinished blog. A lot has happened and I haven't been able to finish it.
  11. http://www.strokechat.net/
  12. HostTracy

    I feel it is very sobering to consider that the person you fell in love with and call your husband had a life altering, life or death medical emergency called a stroke. A stroke that killed the brain cells in the area of the lesion. Killed them and they will never regenerate. Dead brain cells are just that...DEAD. Neuroplasticity and the succession of inflammation from the stroke is why the first few months after a stroke can be phenomenal when it comes to rehabilitation. The brain is so complicated that our most modern medical research still only understands a fraction of how it works. As a survivor myself, I do know that there are so many different aspects of a stroke and it's deficits that to predict 100% would be impossible. Someone can have a lesion as big as a golf all and go on to have wonderful rehabilitation. On the other hand maybe that person has a lesion as small as a dime but they are irrevocably damaged, have severe defecits, lose the ability to speak, to understand speach, or mentally never recover anywhere near where they were before the stroke. I can speak as a survivor...it can be the most horrible reality. No one around you has even an inkling of what you go through every moment of every day. You may not even be able to explain how you feel to anyone. It's scary. It is a living nightmare. If only anyone could live in my shoes for a few moments. It's extremely lonely. Confusing. Uncontrollable. You feel helpless. Hopeless. Maybe you feel like you can not live this way. There is a mountain in front of you and you have to climb each and every inch of it slowly, painfully, all by yourself. If you are lucky you have support, encouragement, love, family. It is daunting to place your own life in those kind of circumstances. It is not fair. Sometimes there is no way to understand the why or how to accept the unacceptable. All I can say is your husband needs more support right now than he may ever have before. No, it's not fair. I can promise you that your anger at this stroke will not change the reality. I firmly believe that a survivor needs a strong support system around them. A support system doesn't mean that they understand why. It means they support despite not understanding. Not everyone is cut out to do that. Stroke can cause the very problems your husband is exhibiting. Not only does it usually cause physical defecits but can be responsible for just as debilitating psychological and mental defecits. Personality changes. Mood changes. Empathy changes. Nice or mean changes. Memory deficits and hundreds of other issues. It is very hard to wrap your head around "He no longer can control this. The stroke may have stripped him of his "normal" self". I'm very sorry that you find yourself in this situation. My sincerest hope is for your relief and I pray your relief still includes your husband. Find your own support, therapy...maybe a stroke support group (I would say most include caretakers and family as well), a therapist, Psychiatrist, etc. Be proactive in dealing with your own feelings, fears, worries, hopes, and any other emotion you may be having. Please try not to look for fair...nothing about having a stroke is fair. Stroke happens to everyone close to the Survivor. No one escapes its' grips. IT IS NOT FAIR.
  13. I very much understand and relate. My bilateral cerebellar stroke was 4 years ago but my PBA never quite went away. For months after the stroke I had extreme fits of flipping back and forth (crying/laughing). I couldn't control it. It was exhausting. It is extremely difficult for others around me...they easily get upset because I easily get upset and want me to stop. They don't understand when I tell them "I can't control it". I have a wonderful Psychiatrist who has worked to help me for the past 3 years. I take Nuedexta specifically for PBA as well as antidepressants and anxiolytics for my severe GAD with panic disorder. It isn't perfect...I have breakthrough moments but I am so much better than I was. It is very expensive but the manufacturer has a program to help those who need financial assistance. I can see why you may have gotten much worse in this way after a brainstem stroke (posterior circulation). These types of strokes can disrupt differently than many other kinds. The cerebellum is also a posterior circulation stroke. I wish you all the best. I think Nuedexta is the only FDA approved drug available specifically for PBA. You may need to work closely with a Psychiatrist or Medical Dr familiar with using Nuedexta. Many have no experience with it but if you find the right Dr. who is really wanting and willing to learn and be of help it can be life changing.
  14. HostTracy

    Deigh I corresponded with Janelle (Green Queen) about a month ago. She told me she had been busy with life and had been taking a break from the site for a bit. She did say she hoped to get back soon. 🙂
  15. HostTracy

    Becky my anxiety is extreme and I'm glad I don't fixate on my hiccups because I would be insane by now lol. Since my stroke (BTW 4 years ago today 😊) I get the hiccups all the time! Like every time I eat or drink something. I think of it as more an annoyance than anything. In my local stroke support group there are many of them with the same complaint. A lot of them get hiccups way more than they ever did before. Also, my step-dad gets hiccups that won't go away every so often too. He has even been to the ER with them and they give him some sort of medicine. I think told him that he has a sensitive vasovagal reflex or something I don't know. I've heard the same thing though. I can imagine how it affects you.