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Stroke Survivor - female
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About KarenE

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    New Member
  • Birthday 12/18/1966

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  • Stroke Network Email

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  • Stroke Anniversary (first stroke)
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    I enjoy cooking, local live music , friends
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  1. I just returned to physical therapy. I get 30 therapy visits a year from my insurance and I split them between my physical and speech-language. I’m not exactly sure why but I get my speech-language therapy from an intern and the facility was not assigned one this semester. That way tho, she can give me an hour each session instead of 1/2 hr. which gives me more therapy. Anyway, during my evaluation with physical (new prescription) I discussed with Jason my difficulty with creating my own home routine and goals. I admitted that I’ve accepted that these spasm attacks and my confused times are going to happen.....randomly and I have to do the best I can to exercise regularly to help avoid them. All this time I spend withdrawn, sitting hunched over playing games on my phone, is what causes more pain and atrophy. I didn’t have an evident physical damage from my stroke. A car accident caused that, and sitting incorrectly as a nail tech for 12 years. Sometimes I worked 12 hour days and usually 6 days a week. When I had my accident in 2005 the doctor said my back was screwed up already and then I sprained it. Over the years I’ve basically kept fit. I’d go through phases of joining the gym and worked out regularly for a good while, then slack, then go back again. I’m so glad I did what I DID do because I think I’d be much worse and probably need surgery. As far a relaxation, I have intentions and will do things for a little bit then slack. I see now how important it is to make these things part of my daily routine so I can feel good. I spray some lavender essential oil on my pillow right before bedtime, get ice or heat pack, elevate the head of the bed(the foot part broke) so I use a leg elevation pillow from my dad. I do my spinal rotation stretches from head to tailbone taking deep breaths with each stretch. I find that is a form of meditation for my and also helps with relaxation. Meditation is wonderful too. Wow, I’m typing as if we’re talking, seemed to flow better. Anyway, so glad to be back in touch. I need to get on my laptop and check out the forums. Have a great weekend.
  2. HI Lin and Carl, Thank you both! It is a great help to know that I am not alone. Carl, thank you for sharing what you experience. I'm much the same. I can hold a conversation like nothing is wrong but either won't remember it the next day or remember it differently. At one of my local support group meet ups we start by telling a little about ourselves if there is someone new, one lady was telling her story and her husband said, "that's not how it happened" correcting a detail and I thought...man, if I had a dollar for every time I heard that! I had been at a place of peace and acceptance, not only with my "new me" but also that I was my father's caregiver. But, then he died and his medical team did not come to the house anymore. I lost not only my dad, but my support system too and have been feeling like...now what? I'm only 50. I certainly realize that things could be much worse. I try to work or multi-task but it tends to make me worse. I'm still waiting for a disability hearing which could take at least another year. Living with month to month stress has set me back quite a bit. In addition to the stroke I have neck and lower back disc issues that create muscle spasms wherever they decide to show up. Being already cognitively challenged, when I take even half of a muscle relaxer I'm so much slower and all my senses get over loaded. I am trying to be seen by a neuro-psych but that's not covered by my insurance which is like medicaid. So I'm searching for other options. I continue to be hopeful doing my best not to sink into a depression again. I want to communicate on here more but sometimes I just can't. After I read other's posts, my mind has all sorts of comments but it's too hard to put into words. Thank you again, I'll make it a point to check in more often.
  3. Kelli, THANK YOU for sharing that link about sensory overload OMG I only read the beginning about how all the senses can be affected and I've experienced some of everything. I will read more when I can concentrate. As for wearing earbuds, I use them when I'm on the phone but think it would be too much for me if I tried to wear them at the grocery store. Charles, Reading and writing (by hand and typed) have been a challenge, maybe because of this eye thing. I envy those that have been able to or had someone journal for them from the beginning. I will make a concentrated effort and set my alert to write at least something daily. I really am so thankful for all that you've shared with me. I'm sure it will help immensely when I get to these doctors to be able to give them terms and conditions in their language. I'm sure it'll be at least 2 months, if not longer, until I see these doctors. Karen
  4. I did a little more digging into my available providers and found a neuro-ophthamologist that accepts my insurance!!! Just need a referral and my next pcp is 9-29 She is so good at requesting referrals for me, I can't wait. I also found a neuro-psych but waiting on a call back to see if they accept my ins. All things happen when they are supposed to. Charles, I do experience anxiety, confusion, and memory issues and can relate to large spaces/crowds/mall to be very overwhelming or over stimulating. I'm curious how you take pictures of what you are seeing? do you take a picture of something and then distort it? And what does this mean?
  5. Thanks Linnie and Kelli, First the neuro that is running the study specializes in stroke and understands that my memory loss/issues are probably from it. "They" whoever they are, have found in people with early onset Alzheimers, their brain cells are cloudy in a pet scan. The pet scan is the last test before actually entering the medication part of the study. During the screening process, several tests are given by different neuro people. And there is a stipend paid for every visit. If I make it through the screening to receive a pet scan, if they don't see cloudy cells, I won't enter the medication part. However, if I do than I'm able to get ahead of the game. I went for the initial consultation by myself, so that's the jist that I remember. My son will be going with me on August 30 so if there is anything questionable, he'll let me know.
  6. Hi Kelli, what do you mean?
  7. You guys jogged my memory!! I had found out about a study a few months ago. It is basically for early onset Alzheimers but the neurologist in charge said that I may get some answers and have access to specialists while going through the screening process. Sooooooo I called them and have an appointment August 30th to start the process. Thank you I will be posting about it.
  8. Thank you both, I was also told to see a Neuro psychiatrist but none in network. I'll check with google to find one.
  9. When I had my stroke, it affected my vision. The way I describe what I saw was, the right side of everything I looked at was smeared. Like all the colors of whatever I was looking at were smeared. From time to time my right eye feels different than the left. My vision will go out of focus and I'll need to blink my right eye a few times to see better. (I'm sure when I'm tired and also today it's rainy here and I usually have my own "partly cloudiness" when it does) I am due to go to the eye dr. Does anyone experience this or something similar?
  10. I can relate on so so many levels. And I found "The Spoon Theory" a few years ago. I shared with my children who are adults, and a few friends. My son challenges me the most since we live together. He likes to push my buttons as most children do, and then when I'm really having a tough day, he'll say, save your spoons!! My daughter however is one of those that says I know, I've been blah blah blah, REALLY? On the other hand, to my friends and families defense, I have handled quite a bit since my stroke. When it happened I was caring for my dad. He had just started to show signs that he shouldn't be left alone, so I had quit my job the previous September and had my stroke in January. Yup, no insurance. My daughter was 19, my son was 17 and about to graduate high school, and at the time my dad was 91. So I put on my game face, did the Why me? for a bit then realized how grateful I was that I already lived with my dad and made it work living on his income. Oh, and he had a stroke at around 87 or 88 yrs which oddly enough affected just his vision like me. He never let on about any cognitive issues which now I can look back and they were there, not so noticeable. If I only knew then what I know now. Somehow I was able to do what I needed to do for my dad, for our house etc. BUT I'd take a lot of naps, just like he did which was another blessing. I seemed able to handle a lot but no one really saw my inbetween down time. After my dad passed and his income stopped, that's when the stress and depression kicked in hard. I get more overloaded now than I remember I did before. People know what I was able to do then and don't understand why I can't now. So I get all the why don't you just? and how about? etc etc. It's weird, I see myself so much clearer but yet feel more affected. Perhaps because I am able to focus on me. I guess although I thought I had accepted my "new Normal" i hadn't. Such a process, I'm almost 7 years into this and realizing new stuff every day. Very thankful to be part of such an awsome, loving group of people here. I am also part of a stroke meet up group locally and like I will enjoy the friendships with my stroke tribe when I feel understood.
  11. Thank you everyone!! As I read each person's post I want to comment on each one. Here's the overthinking....do I reply to each one or try to address everyone in one post? Each one is a little different and room for more discussion.
  12. Twice today (and numerous other times) I was told not to overthink. What they don't realize is, anytime I think, I overthink. That's HOW I think now. How do you explain to people? I had my stroke 6 1/2 years ago and, just in the last year or so, have been going to Speech Therapy. It has been quite an adventure. I didn't have any physical effect from my stroke, just cognitive stuff. And then, not all the time. From the beginning I could walk and talk, but I was cloudy. Sometimes now it seems that I'm worse now that I'm realizing how much affects me and throws me off. Does this make sense to anyone? A have so many questions. Some are answered when I read through the topics but then a little different too. Why is it so hard to get thoughts out? They are there, I can hear them in my head. When I go to type, nothing. I'll stare at the screen trying to figure out how to start. I look forward to getting to know people here and friendship that understands.
  13. Happy Birthday KarenE!

    1. KarenE


      Thank you!! Happy New Year!!

  14. Happy Anniversary KarenE!

  15. Happy Anniversary KarenE!