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Executive Management
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Everything posted by ksmith
  1. ksmith


    My new 'do". Why pink? Why not
  2. Hi gang. As you all know, we host daily chats in the afternoon and three nights a week. ( Caregivers do their own thing 🙂 ) and we are in need for more hosts. A Chat host is the one that leads the chat group and can offer advice if needed. Those who have been a part of our chats, you see how they can be very helpful. Our Denny has been taking charge on many of them and it is tough on him. You may say; " It's only an hour a day". It is, but, e is having some health issues and can't commit to as many as he has been covering. I've had to return to work and that has taking a bite on my time for I work evenings on two of those chat nights. I cover on the days I'm home. Host Linda has been remarkable is what she has been doing and helping out. We are looking for more hosts. One (1) hour a day is not much to ask and is a blessing to those who come in need of help. Monday-Friday 3-4pm(est) and Monday, Wednesday, Friday 8-9pm (est) Thanks~ Kel
  3. ksmith

    that is brilliant
  4. Having a stroke or becoming disabled is a horrible thing to happen to you. Having to be on Medicare and being under 50 yrs old is even more of the proverbial one finger salute. Being in New Jersey and being under 50 and disabled, single you only have one insurance program to choose from. If you do not sign up for this Medigap within 6 months of start of part B, I can’t apply for Medigap insurance again until I’m 65. So Medicare is about $175.00 and the gap is approximately $240.00 a month. Just needed to vent. I never wanted to turn 50 so fast in my life. HAHA Oh PS : So I also had PAAD ( t0 help pay for my medicines) and I gave my card to Walgreens. Well … they have not charged PAAD all year so I've been paying from $10-$230. a month when all I was supposed to pay was $7.00
  5. ksmith

    Oh my gosh. I thought similar thoughts and still do on most days. In the beginning, I often questioned myself for I thought I was 'broken'. Though I can't remember my early recovery, I can say I'm not. Cognitively, yes, I have challenges. But I refuse to define myself as that. The State, on the other hand does. Social Security. The truth is, we are. But that is just a word. Like, survivor. That's what we are. Sure, we can't do things as we once did but it's not something we did to ourselves. We've become injured. Or at least I have. It's a lot to consider for we see ourselves, or at least I did, as damaged goods. The groovy thing is, how I was in the early days, isn't anything like I am now. Your brain/body has a way to learn different way of doing things. And being different isn't a bad thing. What happened to you is a big event and something that takes a while to wrap your head around. You got this.. we'll have your back
  6. pleasure to meet everyone. My heart goes out to you for I can not even begin to imagine how you felt waking up and not feeling your side but there are plenty of folks here that can share their initial feelings following their stroke. I was aware of mine and it's still scary. Mine was 2/24/09. We have chat groups available for all members Monday- Friday 3-4pm ( est) and Monday, Wednesday, Friday evenings at 8-9pm ( est) http://www.strokechat.net/ . Our chat schedules are also found in our Community tab at the top of the message board http://www.strokeboard.net/index.php?/calendar/1-chat-schedule/. On Tuesday evenings 8-9 pm (est) we have a chat for our caregivers and others who are introduced to stroke through others. No one goes through this alone for we all go through this together. x
  7. ksmith

    I accidently deleted Tracy's post, the one I quoted, sorry . I meant to do only mine and I stepped in dog poo.. oops sorry
  8. ksmith

    ** Mic drop** 🎤
  9. ksmith

    these are all good questions but, in hindsight, we can almost always look back and see things we could have done differently. We do what we think, at that moment, are the right choices. I believe at least.
  10. ksmith

    you are not a dork... I'll agree with you as a social dork because I'm standing along with you there 😉
  11. ksmith

    wow.. ( is it bad while reading this I hear Carole King ) you are very strong and wise. Bless
  12. ksmith

    this is EXACTLY why I'm going back to my neuro ophthalmologist next Friday. I have nystagmus ( bouncing eye) in both eye but in my right one, it's worse. I've tried Prisms ( glasses) and surgery to no avail. Finally we've agreed to wear a special contact lens that blocks all sight from that eye so I may see one image. Having nystagmus, you can imagine that all my sight is always moving. I say all that for this: When I only use my left eye to see, it's like trying to look through glasses that aren't strong enough. Now if I look through my right eye, granted it's not stable, is perfect and crisp. From what I remember hearing along time ago was night blindness. But yet I see fine. I also have dry eyes, I was diagnosed and that can cause troubles. http://www.stroke.org/we-can-help/survivors/stroke-recovery/post-stroke-conditions/physical/vision , I fall in most of these for I tilt my head, from double vision, dry eye and so on. Sometimes, I hate to say it but 'It may be what it is" because we still don't know how the brain and eyes get damaged from a stroke. But I'm sure, like you, I'm not going to settle. So I'll wait for my eye doctor :) x~ Kel
  13. ksmith

    OH MY GOODNESS... "SLOW DOWN" makes my head spin...
  14. ksmith

    Every time I read your story I get so angry when I get to the part " sent home with a warning to call an ambulance if *anything* felt funny." I'm glad you're still here and I know it's not always the fault of the physicians BUT I wish more, which they are now, would realize that strokes come in all ages and ways.
  15. ksmith

    Recovery can be a wild roller coaster. The hardest part , for some, can be the tiny improvements we can't see . We , for as long as we can remember, have been able to do something and see a change in ourselves. Our brain convinces us that we can do what we can't anymore but our body says NO because our nerve pathways are broken. Your brain is going to try to form new pathways so it's going to be working very hard and that is EXHAUSTING. So being fatigued is normal. I still get exhausted after a shower. I'm serious. I normally have to lay down after. Every person is different. I'm almost 10 years post and a day doesn't pass that my stroke doesn't hit me an makes me feel like POOP. Everyday will easier for you. whether it is physically or mentally or both. 💗
  16. ksmith

    Hi Steve, I am so glad you have regained as much as you have and had been able to do so soon after your stroke. I, too, have dizziness so I can relate to your struggles, if any. I'm almost 10 years out and , like you, am very lucky to have recovered as I have. We all have regained, some more than others, but I think we all here are in agreement that attitude is a huge part of recovery and we all get that, in our own time. We all have that fire in our hearts to never give up . Quick about me: Had a stroke from a chiropractic adjustment. The movement of the adjustment dissected my artery causing a bleed to the left side of brain. Then clots, that form naturally, traveled to my brain stem. All that being said, after 6 1/2 hrs. of surgery , to remove the clots to avoid a cataclysmic stroke, a stent and a lot of therapy and all that jazz, looking at me you'd never know I had a stroke. BUT if you were to look inside of my head how life is, it's a different story. I have issues I deal with every day and that make life challenging but keeping a good attitude and wonderful support from this board, as well as elsewhere, I continue to amaze myself with how amazing life truly is.
  17. ksmith

    Oh my. Your poor bum. Sadly, it happens more often then not. If I turn fast or move a certain way, yet, I always have issues so it might not be similar to your experience :
  18. ksmith

    I'm happy you have 5 years under your belt, yet, understand the melancholic feel
  19. ksmith

    I still got it

    So, this is a sad story but the way I acted throughout it renewed my faith in myself. So Saturday past, it began as every Saturday at my work. Made breakfast, assisted the woman I aide with her bath, took her and another client to the closet bus stop. Basically a normal-ish day. UNTIL... After dropping off the individual to the bus stop, we, my client or individual, as we should refer, returned back to the program. That is what we call the place where individuals reside. We just pulled into the parking lot and was walking up to our office, so I may drop off the van keys, and another individual was coming out of his apartment and had a strange look on his face and said. " we need your help for AF( the persons initials ) can't breathe. She won't wake up". I said " What?" and he repeated it. I was holding on to the hand of my client and pulled her along with me and we, mainly me, ran.. KM ( MY individual) was being pulled hard by me and I basically flung her onto the couch in the apartment and said " please sit here" I heard the other staff in the back saying " we need to get her on the floor" because she was on the bed and we needed to perform CPR. Two things: I didn't think I could run but I made it happen. I am not super strong anymore but I helped to get 200+ pounds off the bed in one move. We performed CPR in two rounds each while waiting for the EMT's and other emergency personal to arrive. ( She sadly didn't make it) It was fast, that I do know.. I mean she was talking and within 10 mins she was gone. She had a lot of health issues I did things I didn't thinks I could do anymore. I mean,it's not the ideal situation to realize this but I now know when push comes to shove , my brain wont clam up. The only thing I did forget was ,' Lift with your legs not back' I is very sore
  20. ksmith

    It's a boy

    Well, I did a fast trip to Florida to attend my first grandchild gender. Apparently, I was the ONLY one who didn't know. But it was wonderful. I cried for I was looking at my baby and knowing he was a man and a daddy. They had a die dust bag they put under a truck tire to do a burn out, spinning a tire on concrete, which made a TON of smoke and burning rubber smell/ YUCK . The travel down was interesting, to say the least. I flew from Philadelphia to Dallas/Ft Worth.. first. ( all in saving money and I forgot about the time difference (( they are 1 hour behind us)) to dis board, wait for roughly 20 mins and re board the same plane to go to Orlando. Oh yes, this was a Disney flight. I am so glad I down loaded pod cast to listen to. So then exiting the Orlando airport, which is massive, but I normally walk across the bus lane and get my rental car. Again, in the spirt of saving money, I went off site. Ok No biggie, I received and email saying I will get a shuttle to the rental lot. Did I forget to say it was like summer. 82 ( kinda chilly for Florida but summer for NJ ) in jeans and standing out side for the shuttle... and waiting... roughly 45-60 mins waiting and I called them asking if someone would please come. 25 mins later the shuttle came, and we drove for about 10 mins. Holy cow. But in the long run, things don't go as planned but it's an adventure. Finally got the car and headed out. Seeing at night and raining,,, it was a journey. I literally drove to 2 mins away and it was to much for me so I called my son and he and his girlfriend met me and he drove me to their home. Ashley, my son's GF, was kind to give me her bed, which was made in heaven. Her family, now my family, are absolutely wonderful. My ex ( my son's father & his GF) made up their backyard into a beautiful party site. All I can do is smile. ( the picture of Ashley doesn't do her justice) she is lovely
  21. ksmith

    This is so important!! Thank you Heather for this post. Stress can cause our bodies to do so many things, both good and bad.
  22. ksmith

    Peter and Lisa, welcome both of you to this site. Like others have said before, we've traveled this road and are still on the journey so we , speaking for myself here, can understand your struggles. I've been on this journey for just about 10 years and still don't feel like I belong. Having said that, not every one feels the same way after stroke. Mindset is a huge part of recovery but not every stroke , nor every recovery, are the same. Depending on issues we have a result of stroke can create different outlooks. Like me, I have 'invisible' problems so when people first meet me , they wouldn't never know I had a stroke. But what they don't see is how I see the world through my eyes. Dizziness, double vision, fatigue, nystagmus( eye bouncing) palette in my mouth jumps causing twitching on the right side of face ( not common after stroke but apparently I won that lottery 😕) and many more cognitive struggles. I used to enjoy going out with people but now I would prefer to never leave my house. Social Anxiety now is my bane. But having said all that, my point is we all understand, some more than others. Having people who have never had a stroke, nor know anyone who has, try to understand how we feel is akin to trying to explain quantum Physics to a pre schooler and have them teach a class. They may just look blankly at you, and so would I to be honest, and that is how many people who don't understand would. They live in their own world which is a non stroke world. We all lived in that world as well but we have to embrace our world now. That is not an easy feat. https://psychcentral.com/lib/preparing-for-grief/ or https://www.webmd.com/balance/normal-grieving-and-stages-of-grief#1 Here is a short read about the stages of grief. We often hear about the 'stages of grief' after a death. Having a stroke causes a death of our old life. There is no exact time line for grief nor is their an order for them. Meaning, you could be in the first stage for years then jump to stage three then jump to five and back to stage one again. There is no right or wrong way to grieve, so don't be to hard on yourself. We can only do what we can do so make the best of it. When you may hear 'It does get better' I know it would make me so upset for I wanted to get back to my old life but now , looking back on it, I see it as my brain will work as best as it can to bring us some normalcy. Our brain and body have to find new ways of talking to each other, so they can work on the same page, so sometimes I like to say we are turtles walking through peanut butter. We can still do many of the things we did before, we just have to find alternatives. Somethings may be harder than others but we aren't the only ones who have challenges out there, we just have to look. Sadly, depending on where we live, some areas aren't adapted to accommodate those people so why not be the catalyst to get the ball going. If you want to do something, see if you can. Social Anxiety and sensory challenges can be a huge hurdle so my old cognitive therapist told me to start in small steps. Ten years later, I'm still only in the beginning steps. Example: Going to a mall ( I refuse hands down..ugh) if you can drive or go with someone and go to the parking lot and sit there. And leave. Do this as long as you need to. When you feel confident, get out of the car a and walk to the doors. And leave. The point is do it in steps. We are so worried how other perceive us that we are embarrassed to go out. I learned, from my therapist, while going to a restaurant and we walk in to our table everybody is looking at us. But those folks are so deep in their conversation and world, the look and go right back to what they were doing. I walk like I'm drunk so I was always afraid and I used to bring a cane to justify why I was walking funny. Now.. I frankly don't care. I still don't do everything I want to but I'm spreading my wings more and more because if I don't who will? this is my life and I was given a second chance so I'm going to do my best to enjoy it. 90% of folks with the kinda of stroke I had die so I'm living for them ,too. (( I hope I made sense. That is another challenge I have))
  23. Tracy, firstly, your ability to write your thoughts are extortionary. xx
  24. ksmith

    oh yes. I often felt like people often complained because I make plans for everybody.. Kind of life " handicap accessible" No matter is no one shows with handicaps, I often make plans that will involve everyone. It's funny how our brains change to be more conscious of others, not just a few. It did bother me but I am now what you would call a loner. I don't enjoy being with a bunch of people, mainly for I don't know how to deal with negative folks. 🙂 I think if they don't want to be inclusive in your plans, their loss.
  25. ksmith

    Hi there Mark, It's a pleasure to meet you however, I wish not like this. Numbness is a strange feeling and I can't begin to imagine how you feel. I found this information ( https://www.stroke-rehab.com/sensory-re-education.html ) on home exercises you could do to help with re educating the sensory part for your brain and body, for it moves. It sounds like your brain is trying to re wire 🤞