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Thread: CN Central: NOVEMBER UPDATES

  1. #21
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    Thanks so much Rose and Mary Grace! I messaged him again today and followed your suggestions. I'm trying to offer my help in such a way where I still respect his desires and not sound as if I am pretending to know everything etc. I will update you if he replies. I forgot Kathleen had strokes. How scary! I am SO sorry! In a book I read I heard fear of more strokes is a common thing. I hope my teacher is not afraid of that! I looked up the TED Talk. Wow! The brain does such strange things when damaged. I don't know what parts of my teacher's brain were damaged. I don't know if his stroke was a brain bleed or a blockage. I could kind of tell from the messages that he felt tired and weak compared to how he was before the stroke. Can we help him with these kind of symptoms somehow? There are also grammar mistakes on his messages but english is his 2nd language so I don't know what is stroke and what exactly is his normal. Can language disfunction in strokes be subtle like that? I am terrified to pry and ask about the extent of brain damage. I don't want him to be embarrassed, angry or scared by my questions. I don't want to stress him at all. Do you think I should ask at some point?? Is there a proper way to ask things like that???? I'm disabled but I'v never done this before!

    My classmate wanted to know if it was possible for him to suffer seizures or even end up with epilepsy or something as a result of the stroke????? She has heard of people with brain issues having seizures and I suppose she is afraid he could suddenly have a seizure while he's with us in class when he comes back etc.
    Last edited by funnylegs4; 11-14-2015 at 05:33 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  2. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    Unfortunately, seizures do often occur following a stroke. We must hope that his physicians are keeping a close eye on him for seizures. He may even be receiving an AED to prevent a seizure. But I do know people (in late 50s and 60s), who had seizures following a stroke.

    Try not to anticipate too much and set up anxiety for yourselves, when he does return, which may be several months from now. Depending upon the severity of the stroke, he will need rehabilitation, including PT, ST, and OT for awhile. And prepare yourselves for him to be different than he was before his stroke, even if that difference is slight.

    Fearing another stroke, or a heart attack, for those who've had a heart attack, is extremely common. That fear can lead to depression. The fear, I think, is wide ranging. From being incapacitated to financial ruin. From being a burden on your loved ones to being unable to provide for them.

    I would advise that you not discuss the extent of his brain damage with him, at this point. He may want to discuss it sometime in the future, but for now, I think that it is best that you just continue to show your support. Too many questions may seem intrusive, and he may not even know the extent of his damage.

    He probably is tired and weak, and only time and proper therapy will help him to recover. Just letting him know that you're in his corner and caring about him will be a boost to his morale.

    Deep breaths, dear. That he is communicating with you is a very positive sign. Hold on to that, and keep praying.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #23
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    Hi Rose, Hi Mary Grace,
    THANK YOU SO MUCH! I just heard from the teacher with the stroke. He's doing okay and he told me they figured out the brain damage is to the sensory part of his brain. He said luckily his speech and motor centers have narrowly escaped damage. Thank God!! I'm so relieved! You have no idea how relieved I am! He still feels weak and rests often. He said he has an appointment with a neurologist next week to further determine the extent of the damage,if he is at risk for seizures etc, and to medically clear him to work again. I did not ask him about his brain damage or anything. He brought it up completely by himself! I'm so honored that he feels safe telling me as much as he did. I have a feeling he wants to return to work super fast out of fear of financial ruin to himself and his family. He expressed to us before the stroke that he has to work multiple side jobs to make ends meet. So it worried him even before the stroke. I hope he doesn't let this fear control him in a way that could hurt him physically or mentally.
    My questions are what does damage to sensory centers mean for him? What senses might be effected? What symptoms? I know you said he might be different post stroke, and I know you are right. How do my classmates and I react to these changes? How do we offer him comfort etc without embarrassing him, freaking him out, or just pain pissing him off???
    I have only met people years after [insert injury/disability here] when the disability has already become part of their identity if you will. He is not in this place yet mentally. I know he will want us to still see him as a knowledgable, strong authority figure who is supposed to be helping us, meanwhile my classmates and I will want to help him and watch over him. How do we let him know we respect him the same way we did before? How do we let him know we know that the core of who he is has not changed??
    Please any advice is helpful?! I don't want to open my big mouth about things I do not understand and make a fool of myself in front of him! I don't know how to do this!!! People would think I would know how to react because of my CP and my films but I simply don't! I am so grateful to this teacher for showing me how little I know. Like Rose said, he has taught me so much more about life than he could ever know or ever hope to teach me in the classroom! btw should I tell him that?? Would he like it? I know nothing! Nothing. Sorry for ranting about some of my own self realizations and insecurities here!
    Last edited by funnylegs4; 11-15-2015 at 06:25 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #24
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    ((((((funnylegs4)))))) ~

    You aren't ranting. You're growing. You're learning. You are seeking knowledge and experience to help you with a real life lesson. And that's wonderful, because some people might choose to not know anything about strokes or what your professor is facing, thereby choosing not learn from him and his experience.

    My high school journalism teacher taught us that we needed two things to be successful journalists: 1) be a student of life and all of its obvious and subtle aspects, and 2) listen to others, really listen to them, pay attention to their nonverbal cues, as well as the words they speak.

    This is excellent advice for all of us, of course, which is why I'm sharing it with you.

    Pay attention to your teacher's demeanor, his emotions, as well as what he says. And let him lead you to the conversations, which are right for him. He's already done that with you, by entrusting you with his fears and concerns. And as I said, his fears are very typical of folks, who are recovering from catastrophic illnesses or neurological events.

    The trauma of a stroke or heart attack or major health issue holds the fears of "When will this happen again to me?" "What if I don't survive the next time?" "What if I don't keep getting better? What if I only get a little bit better, and then stop at that point?" There is a lot of anxiety. And that needs to be addressed by medical professionals, along with all of the other components of healing the body.

    You will be letting him know that you respect him by the way you accept him and allow him to call the shots in his recovery.

    Have you ever experienced a person, who wanted to "fix you?" Who, with all good intention, offers advice, or claims to have read this or that about your condition, or thinks if you use emu oil, you'll feel better, etc.? So many times, my family members particularly, would come up with something they heard on the news, which they believed would turn my boys into "normal" children.

    I would respond by instructing them that my children are not their conditions. That they are beautiful and perfect in their own way, and they don't need fixing. Acceptance, as we are, is vital in every human relationship.

    Don't change a thing about the way you feel about your teacher. You loved him before his stroke. You love him now. And the best way to let him know that is by showing it in your actions.

    You can ask him, "Is there anything that I/we can do for you? How may we help you and your family?"

    Let him be your guide in how you respond to him. Encourage him to continue pursuing all avenues of healing. Reassure him that he's making great progress, and that he just needs plenty of time to heal.

    His physicians will determine when he's able to return to work. In the meantime, perhaps there are social workers, who might assist him in receiving disability benefits, which might ease his financial burden a little.

    Focus on his healing, and that will help him to focus on his healing. Pray for his strength and recovery. Be there for him whenever he opens up to you, and think about how you would feel if you were in his shoes. What would you want someone to do for or say to you? Think about your own pride of independence and apply that to him.

    Your teacher clearly appreciates your friendship, your concern, and your caring. So, you are doing exactly what you should be doing for him now. You will learn as you go along, what is the best thing to say or not to say. There is no science to it.

    Healing prayers on their way for your teacher, and prayers for guidance for you and your classmates ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  6. #25
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    Funnylegs, I have to Ditto what Rose has said. She has some wonderful advice! You are doing exactly what he needs so far... Just listening and being there. Asking if there's anything that you can do to help... phone calls, food, etc... It's great that he feels comfortable sharing with you. I'm sure if you continue to be there he'll continue to share what he's comfortable with. It's important to know that his symptoms may be invisible to everyone else. Not that you need to be always asking how he feels that could get annoying LOL but to just be listening like Rose said to his body language and what he needs to share. Sometimes people forget and kind of disapear once they think all is well and no more help is needed because the person looks fine. The book I mentioned by Jill Bolte Taylor A Stroke of Insight, is really good if you get a chance to read it. She talks a lot about what someone can do to help.
    I'm not sure what his after effects of the damaged sensory part of the brain will be... If you have some specific questions for him you can always say, "if you're comfortable sharing ????" I found sometimes I just didn't get into details because I was afraid the person didn't really want o hear about it, but I really didn't mind sharing details and sometimes it really helped. It helped to have someone who really wanted to know "how is everything going today"? I really think you'll know how to react to any changes in your teacher, you truely care and you'll react in a caring way which is what he needs. And as Rose said asking and learning about this is never ranting. You are an amazing friend. Good luck and prayers for your teacher. It sounds like he's got a good attitude that means a lot.
    Mary Grace

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  8. #26
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    http://www.stroke.org/we-can-help/su...ysical/fatigue

    http://www.braininjury-explanation.c...s/neurofatigue

    Funnylegs, Here are a couple of sites posted on the Young stroke survivors facebook page I follow. It explains the brain fatigue after a stroke. Very interesting reading. Kathleen needed 12-13 hours of sleep for years after her strokes (she had several and quite severe). Just in the past couple years she can get by on 10 or so...
    Mary Grace

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  10. #27
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    ((((((Hugs to All)))))) ~

    Here's a mini update from us ~

    At about 3 p.m. today, Jim told me that Jon's feeding pump was alarming, and the alarm on the pump screen read: "Call the Service Tech" "Error Code: 33"

    I tried to shut off the pump, restart it, which didn't work. I rethreaded the feeding line. That didn't work either.

    So, I called our pharmacy rep for Jon's feeding supplies, and she said that she had no idea what was wrong and that the tech rep was at lunch.

    Irony? He's at lunch, while Jon's food supply stops?

    Around 3:30 p.m., the pharmacy rep called me back and told me the tech service rep had no idea what was wrong with Jon's feeding pump, so he pulled a brand new pump out of their inventory, and it was on its way to Jon.

    Jon goes off of his feeding at 5:45 p.m., so that he can have his seizure meds at 6:45 p.m.

    His new pump was delivered by 4:45 p.m., which is probably a record of some kind. So, once we had it set up, Jon was able to receive about 45 minutes more of his nutrition. He ended up with 1300 out of 1500 cc for the day.

    When this happened today, Jim and I both said, almost simultaneously, that we were grateful that it occurred at 3 p.m. and not 3 a.m.

    Meanwhile, globally ~


    Prayers for Peace ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  12. #28
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    Rose, As I was reading your post I was thinking the same thing. OMG what if this was happening at 3 a.m.? So glad it didn't. So glad they got you one so quickly.
    Our update... Cast off today! Hopefully all is well under the cast and no further casting. She's putting weight on it more often so hopefully with no cast she'll want to walk even more.
    Mary Grace
    Last edited by mg12061; 11-18-2015 at 02:01 AM.

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  14. #29
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    Hi Rose, Hi Mary Grace,
    First of all, Rose, I am thrilled that the feeding tube incident was quickly resolved! That was fast! And yay to Kathleen for getting the cast off! Whoo!

    Thank you both so much for the advice and links in regards to my teacher who had the stroke!! Thanks for understanding my emotional spillage. Your advice allowed me to understand the situation more. The links explain why he kept mentioning he was resting. He must have felt so drained. I heard from him again and he said he appreciated my comforting wishes. He sounds more like himself as time passes. Brighter and more alert. He said he feels stronger now and wants to return to work next week if the neuro allows him to do so. My class is concerned that he might be returning too soon and needs more time to heal,we don't want any stress on him, but we will let his doc deal with that. If he does come back next week that will be pretty emotional for us. I'll update you all.
    Last edited by funnylegs4; 11-19-2015 at 06:52 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  15. #30
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    ((((((HUGS TO ALL)))))) ~

    ((((((Mary Grace)))))) ~

    How did the cast removal go today? What a great day! I'm anxious to hear how Kathleen is managing and if she's weight bearing. And ... photos!

    ((((((funnylegs4)))))) ~

    I'm glad that we were able to help you, and happy to hear that your teacher is making such great progress. I'm sure that he will have to go through a lot of hoops and tests, before his doc releases him to return to work. Please do keep us updated.

    ((((((Tamie, Lisa, CPChick, Donna, Marcie, and all other CN Family)))))) ~ Please drop by with an update soon! We miss you!

    OUR UPDATE ~

    New pump seems to be operating well. We're up the creek if it fails, or Jon's bed or mattress fail, particularly at 3 a.m! That is Crisis City here. Jim and I have discussed purchasing a back up pump, in case his mattress pump fails. If his bed has a problem, we can call Invacare, and I would hope that they would respond with a rental for him, until we could purchase another bed.

    We are dependent upon equipment and the electricity to power all of it.

    After a dose of MOM a few days ago, Jon produced for about 3 days. And then it stopped. It's clear that he isn't going to evacuate his bowels without some kind of encouragement or intervention. So, I guess we will continue to follow the regimen of glycerin suppositories, enemas, and MOM.

    Jon's vitals are excellent, and he's really enjoying all of his new movies and nifty blu ray player. Our family friend, and Jon's best bud, gave Jon the blu ray player for Christmas last year, and we hadn't hooked it up. When he stopped by with a gift for Jon's birthday (a blu ray of a recent Def Leppard concert ~ Jon & his bud are from the 80s, and that's what they enjoy! ), he hooked up the blu ray player. He even went home and came back with the proper cable to connect it. (This is the same family friend, who took Jim's urine to the lab a month or so ago. He's a wonderful person. He is Jon's age. We have adopted him! )

    Jim had the energy to grocery shop for us this week, so we're pretty well set with all the grub we need for our Thanksgiving feast. A Field Roast (grain, not meat) Celebration Roast with my savory basting sauce, fingerling potatoes, organic dressing/stuffing (on the stove, as we have nothing to stuff), wild mushroom gravy, fresh carrots, fresh green beans, and I'll probably make pumpkin muffins. It's only for the 2 of us. And I have no idea what time we'll eat it; perhaps, we'll try for a mid afternoon meal, so we can share it together, instead of eating alone at night, as we usually do, since Jim sleeps in the evening.

    Prayers and positive, healing energy on the way to all of you, my dear friends ~

    Be well ~

    Love & Light,

    Rose

    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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