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Staff - Stroke Support
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Posts posted by HostTracy

  1. wow Mark you covered the whole breakdown! 🙌 I would have to agree...I think a minnit profile works the best. There is some hidden confusion about rooms...a few things to remember: when you log in (I log in everytime now no issue because i made a minnit profile...can maybe explain that as well) it automatically puts you in the lobby. you have to click the room box and a drop down menu will fall. Then click the room you want (if you look at the chat schedule it should tell you which room to use) it will never be the lobby so you will have to go to the appropriate room. Think of the lobby as a waiting room...when you see the chat time start it's time to go to the other room. I'll think of some more tips and try to make a visual reference to use. 🙂

  2. Jerry I am disturbed yet again at some of the decisions made around stroke survivors and their recovery efforts. Especially at a time when you need those things on your side more than ever. I say fight...appeal...don't give up or just blindly accept craziness. Pass that along to Shannon's caretakers. If I find more helpful advice I'll add it here. Pam said it best. Give him you and accept him and his needs on a daily basis (it changes a lot...he may need support from you one way today and a different way tomorrow...just be you).

  3. So sorry to hear about your friend Mark. The power of words and honesty is remarkable when it comes to making friends we have never met. We love them and respect them as a part of our lives and hold the truth that we are a part of theirs. Surreal. Grief is still the same. I'm happy to hear you are enriching your life after stroke and not living in a safety box. Kindred spirits are healing. God bless you, your friend and her extended family and friends.

  4. On 2/20/2019 at 9:15 PM, PaulNash said:

    What I wanted and needed most, especially immediately after my stroke, was someone who would give me some comfort and support (nothing special, just hanging around or chatting), who would calm my fears when I get anxious (again, nothing special, just saying "it'll be OK"), and who made it clear that they were in this for the long haul, and were not going to abandon me.


    First thing to to be there and to be present.  Next is to ask him what he wants or needs.  Often just having someone there, or holding a hand, is all that os needed.


    You will do a great job; your friend is lucky to have you.



    These things are so so true. I can't agree more. Being there and being present for your friend is the greatest thing you can do immediately after he wakes from his stroke. He has a long hard road ahead of him and to not feel alone, or to know you are there during this long journey is HUGE. Jerry will have a lot of therapeutic help at first and man it will be hard. He is really lucky to have you. I also would like to tell you about our forums and other community programs here that can help you as well. There are forums for caregivers and I know all you have to do is ask and someone will answer. There is also a caregiver chat (look at the chat schedule) where you can meet and talk to other caregivers. You can also ask questions, talk about your concerns, talk about the stresses that may come along with caregiving, and find support. There are also links to other Strokenetwork sites in Quick Links at the top in a drop down menu, there is a caretaker link there as well as others that deal with stroke, stroke deficits, and the health side of stroke. Under Quick Links you can also "Ask an expert" and a link to Strokenet Blogs. I hope some of these things help Jerry. 🙂 God bless.

  5. Janelle (GreenQueen) is so right Jerry. You have to care for yourself first before you can take on the heavy step of caring for your friend, Shannon. Getting plenty of rest, eating well, taking your medication all so you can be healthy and strong for when you are there supporting your friend. I think that is what Shannon would want for you too from your posts. He is very lucky to have a friend like you. 🙂 I also wanted to say that when your friend begins living this journey awake...he will be so grateful for your friendship. He may not be able to show it or even say it for now. In fact, like Heather said earlier your friend will probably have little control over his emotions and feelings at first. It can be scary, confusing, frustrating, depressing, exhausting, painful, and so many other things at first. Try not to take things personal and know your friend is experiencing a very unexplained world and holding his hand and just being there for him is tremendous! I'm so happy you elicited a smile and a hand squeeze. He knows you are there and hears you. Remember take good care of yourself Jerry. Be strong for you first so you can be strong for your friend. Keep us posted and know this site is a great place to get more information about strokes, deficits, milestones, caretaking, and a wonderful place to get support for you and your friend. God bless.

  6. I have seen so many posts to this thread but have passed by it because...well scrabble is not my strongsuit and it's been a while since I have played. But curiosity got the cat. I had to poke in and read. Might I say that it was awesome lol. Deigh indeed you described your scrabble game as the World Cup or better! Who knew it could be so exciting!!! 🤷‍♀️ Seriously! I have nothing to add but to tell you I enjoyed the read. 🙂

  7. Tyrusrex you might want to inquire about switching to a dedicated MD. Not that a NP is not a capable healyhcare provider but if I were in your position it would worry me too. Especially if he/she seems not very familiar with your medical issues. I would let them know your concerns and inquire if you can change PCP, even for feeling better about the situation. Let them know if it causes stress...stress is something a stroke survivor should steer clear of. I'm mouthy with little filter since the stroke so I would say something right away lol. I would encourage you to at least inquire about change. Maybe your insurance would be happy to help you find a Physician you would feel comfortable with. Best of wishes.

  8. I agree, this is a question for a Doctor and hopefully one familiar with your health history. Also, everything I have read has said don't stop taking a medication (unless you are having an allergic reaction...contact health professional asap) until you discuss your concerns with you Doctor. Good luck, I wish I had a concrete answer but you need an answer from a health professional. Let us know how it goes. 🙂

  9. Pam I love how you think things out. Oh the inner child...call her to come play often. Sometimes she is stubborn but she only knows to bring with her the good feels. I like my inner child 👑 she brings bravery with the simple gift of freedom to feel joy. It's pure, it comes from the heart. So I say bring out the colors and make beautiful art until your heart is replenished!!