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  1. Old Neuro is so annoying. So Sorry old Neuro...

    Old Neuro is so annoying. So Sorry old Neuro refuses to explain anything of value. Glad EEG was normal though.
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    I don't mean to scare you but this definitely...

    I don't mean to scare you but this definitely sounds like a nervous system problem, and honestly it sounds like your son may be having strokes or mini strokes. All I could think of when I read this...
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    Awesome! So pretty!!!

    Awesome! So pretty!!!
  4. Hi Lost Parent, How are you? How are the boys?...

    Hi Lost Parent,

    How are you? How are the boys? I’m glad he’s only had one seizure, that seems like a big improvement! The wording of that is extremely confusing. It would seem to me that they mean...
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    BEAUTIFUL! Glad Kathleen had such a blast!

    BEAUTIFUL! Glad Kathleen had such a blast!
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    Happy Valentines Day BT!

    Happy Valentines Day BT!
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    Thank you so much for your prayers Rose! He's...

    Thank you so much for your prayers Rose! He's doing okay but I'm still paranoid about his health. So sorry for the set back with Jim. Perhaps something about Jon's bed is causing gas. Can Jim sit in...
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    YES! YES! AMEN! I think if simple accommodations...

    YES! YES! AMEN! I think if simple accommodations are made STEM could make such great progress with disabled scientists at the helm. Disabled people are surrounded by STEM our whole lives and in the...
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    Rose, Neat article about the state of Disability...

    Rose,
    Neat article about the state of Disability depiction in movies that just came out...
  10. Replies
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    Hi Rose, Yes the same is true for me with...

    Hi Rose,

    Yes the same is true for me with BMs. I have to eat to “go”. I’m so sorry Jim has a UTI. But so so glad the bed ladder worked out!!! Yay!

    Update on my diabetic friend in case you are...
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    I completely agree on every level! You're very...

    I completely agree on every level! You're very welcome!
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    Hi Rose, I’m so glad the overall depiction of...

    Hi Rose,

    I’m so glad the overall depiction of disability was decent as that is the most important thing at the end of the day. I was so glad to see your opinion. Thank you so much to both you and...
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    Hi Rose, I think moving Jim into Jonathan’s...

    Hi Rose,

    I think moving Jim into Jonathan’s room was absolutely the right thing to do! GREAT THINKING! I’m sure being in Jonathan’s bed will help Jim’s bones and joints and he gets to feel closer...
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    Hi Rose, I'm glad Jim is doing better. Is it...

    Hi Rose,

    I'm glad Jim is doing better. Is it possible to sign Jim up for a wheelchair transport service like we have in my city if Jim ever needs it? Lots of cancer patients use it here. Would...
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    Hi Rose, Huge HAPPY HAPPY BIRTHDAY wishes to...

    Hi Rose,

    Huge HAPPY HAPPY BIRTHDAY wishes to wonderful Jim!!! So glad he got to have this birthday!!! Especially with you! I’m so glad Jim is starting to feel better! You rock Jim!

    Thanks so...
  16. I'm all for new science and technology but this...

    I'm all for new science and technology but this is far from being ready for use.
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    Hi Rose, I’m so sorry Jim was weak and had so...

    Hi Rose,

    I’m so sorry Jim was weak and had so much anxiety as he left the house but I’m so glad John was there when Jim needed him and that the transfusion appears successful. I’m so sorry the...
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    Hi Rose, So Sorry Jim needs the transfusion....

    Hi Rose,
    So Sorry Jim needs the transfusion. Good luck and my prayers. The thing that I got yelled at for was a schedule thing that they messed up but blamed me for. I removed myself from that...
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    Weed use and stroke risk

    marijuana use and stroke study https://www.yahoo.com/lifestyle/heavy-weed-use-linked-to-higher-risk-of-stroke-in-young-people-says-new-study-005307634.html
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    Thank you so much! It worked!

    Thank you so much! It worked!
  21. Replies
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    The fact that they didn't see the blood result...

    The fact that they didn't see the blood result for an entire week is disturbing. Perhaps the lab made an error and not Dr K himself? That's happened to me. I feel your frustration because I'm in...
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    Ow! That's awful. I had a teacher once with a...

    Ow! That's awful. I had a teacher once with a similar problem. She would have to pull over and throw up on the way home too. She said her horrendous migraines made her more likely to have a stroke...
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    I certainly read your political posts agate. I...

    I certainly read your political posts agate. I just talk about politics so often when I'm NOT online that I may not have anything to add to the discussion because my politics quota in my brain is...
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    Stayed home. Ate lots of food. Found out some of...

    Stayed home. Ate lots of food. Found out some of my friends get hyper when drunk...LOL. Nothing new really. Happy New Year to Everyone at BT!
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    So sorry about the rash Rose! Just wanted to let...

    So sorry about the rash Rose! Just wanted to let you know I told my family about Jonathan and Michael as we were celebrating tonight and they told me to tell you they were sad your precious children...
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    Merry Christmas! My plans are just spend time...

    Merry Christmas! My plans are just spend time with family, open gifts and eat.
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    Hi Rose, You’re very welcome! Thanks! I’m...

    Hi Rose,

    You’re very welcome! Thanks! I’m sorry you are tired and unable to accomplish what you wanted. Excuse me if we discussed this in the past, but my blind friends use their iPads completely...
  28. Any surgery has risk. Even the most simple one.

    Any surgery has risk. Even the most simple one.
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    Hi Rose, Thanks! If you ordered John’s gifts...

    Hi Rose,

    Thanks! If you ordered John’s gifts via amazon I think they will get there in the nick of time but I also know that John is the type of friend who wouldn’t care if he got the gift on...
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    You’re welcome! Thanks Rose! For once I’m pretty...

    You’re welcome! Thanks Rose! For once I’m pretty on track with my gifting schedule for Christmas. I usually send gifts late LOL. Thanks so much for answering my question. I was just curious. Just...
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    View Post

    Hi Rose,

    Iím so SO sorry the DNR talk has to happen at all, but since it has to happen Iím glad you are addressing it early enough that Jimís wishes are made clear. You wouldnít want an outside...
  32. Very true.

    Very true.
  33. I'm so glad your husband's foot was saved. You...

    I'm so glad your husband's foot was saved. You never know how you feel about surgery or disability until it happens. My friend who is diabetic had eye surgery age 64. I know it's more risky for...
  34. Keep an open mind that when the time comes you...

    Keep an open mind that when the time comes you may want a surgery. Sometimes people don't realize that they want a treatment or to live with a certain condition/disability until it actually happens....
  35. Very interesting. The questions they mentioned...

    Very interesting. The questions they mentioned seemed like questions all patients should consider before having surgery, not just older patients. In my case I would rather be functional. It seems the...
  36. Replies
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    Thanks for the update Rose! When having "Big...

    Thanks for the update Rose! When having "Big Picture" talks remember how good Jim's blood work still is, and yet be realistic. Impossible Whoppers are vegan but they are not health food at all. One...
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    2 cute little kids with CP on Broadway

    2 of the cutest kids with CP I have ever seen https://twitter.com/NBCNightlyNews/status/1205978269893320704 in a Broadway show.
  38. I don't know anything about MS but I do know the...

    I don't know anything about MS but I do know the left side of the brain is considered to be the side that controls speech. Speech is a complicated function because you have to process it to...
  39. Tamie, I'm so sorry to hear about this! How...

    Tamie, I'm so sorry to hear about this! How heartbreaking for Helene. Prayers to her!

    Thanks for adding Heather to the list Rose.
  40. Replies
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    You're very welcome Rose! Anything for you dear!...

    You're very welcome Rose! Anything for you dear! I'm so sorry about the black stool and Dr visit fatigue. That totally sucks. I would come socialize with you and Jim to keep you company if I could. I...
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    Happy Birthday!!!

    Happy Birthday!!!
  42. Replies
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    I lit a candle for your boys last night Rose, as...

    I lit a candle for your boys last night Rose, as promised. I have never seen frozen rice before. I learned how to cook "Forbidden Rice" in a pot for 50 mins. It's healthier. Saffron rice is wonderful...
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    Thanks for the update Rose! When I saw Jonathan's...

    Thanks for the update Rose! When I saw Jonathan's name on the Angel list I cried for you. I promise I will light a candle for Jonathan and all the others. Ah yes the "what to gift to who" feeling....
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    Welcome back! I probably wasn't here the last...

    Welcome back! I probably wasn't here the last time you were part of the group. I have Cerebral Palsy which is a bit like a stroke and I wrote a film based on a teacher friend of mine who survived a...
  45. Hi Lost Parent, Thanks so much for the...

    Hi Lost Parent,

    Thanks so much for the update! It really bothers me when doctors like your current neurologist can’t admit when they are wrong. Yes.Please, please go with the new neurologist who...
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    Happy Thanksgiving Rose! Your thanksgiving dinner...

    Happy Thanksgiving Rose! Your thanksgiving dinner sounds fabulous! I was with my family but we had meat Turkey instead of Tofurkey this time.
  47. So Sorry for my delay in posting as well. While...

    So Sorry for my delay in posting as well. While I'm not happy your son has focal seizures I'm glad you are finally getting somewhere with figuring out what your son needs. That is definitely...
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    Happy Thanksgiving to all at BT!!!! ...

    Happy Thanksgiving to all at BT!!!!

    houghchrst, I learned that in PT too!
  49. Wow!!! I have heard stories like this before on...

    Wow!!! I have heard stories like this before on "Animal Planet" channel and will be sure to have a chip made for my pets when I have pets again. Thanks so much for sharing!
  50. Replies
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    Hi Rose, So sorry for my delay in replying. I...

    Hi Rose,

    So sorry for my delay in replying. I was busy traveling and working. Congrats to Jim on radiation “graduation”! I love that Jim got a “graduation certificate”. Again I love your waiting...
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    Something like this could save the lives of...

    Something like this could save the lives of people with strokes. Awesome! I wonder if a scan like this could diagnose Cerebral Palsy.
  52. I'm sorry for my delayed reply. Like Rose said,...

    I'm sorry for my delayed reply. Like Rose said, I'm so so sorry your son has seizures and I'm so so very sorry the first Neurologist completely ignored what seemed pretty obvious, to even someone who...
  53. This is a cool article. Because I have Cerebral...

    This is a cool article. Because I have Cerebral Palsy many others have shared about their disabilities and chronic conditions with me and this has led to some of my deepest friendships so I am always...
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    I'm so sorry to hear of the blood in Jim's urine!...

    I'm so sorry to hear of the blood in Jim's urine! I pray that goes away ASAP!!! But I'm so touched by hearing more stories of the beautiful folks at the treatment center and I'm so glad Dr S is a...
  55. I'm so sorry your current Neuro is completely...

    I'm so sorry your current Neuro is completely ignoring that your son has a CVI. That's very alarming to me, because it makes me think your son is indeed having seizures and she's ignoring it. I'm...
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    Hi Rose, Sorry for the delay in replying....

    Hi Rose,

    Sorry for the delay in replying. Just busy. I have been watching the CA fires everyday on the news and praying you and Jim are not effected. The thought of you both going through a...
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    Happy Halloween everybody!

    Happy Halloween everybody!
  58. So sorry for a delay in replying!! Interesting....

    So sorry for a delay in replying!! Interesting. I'm glad the Dr is at least acknowledging that the "behavior" term does not have to mean "voluntary". Perhaps these links would help...
  59. The first part of the Doc's message I can...

    The first part of the Doc's message I can somewhat believe but unless an EEG or EKG is 24 hrs long it can still miss things and what the heck does this doc mean by "a behavioral spell"? Does your...
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    Hi Rose, Thanks so much dear! I forget if J...

    Hi Rose,

    Thanks so much dear! I forget if J meant the MRI results from the scan that was done on her today or the test on the uterus in her text. Yes she had an MRI this morning and saw an ENT...
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    Thanks so much Rose. J doesn't get results until...

    Thanks so much Rose. J doesn't get results until Nov. She's having horrendous dizzy spells, even worse than the one with the stroke had, so they are trying to figure out if it's connected or 2...
  62. You're welcome! If you have bad discs and you are...

    You're welcome! If you have bad discs and you are going numb or having pinpricks that could be a sign your spinal cord is being pressed on and you could end up paralyzed if it's not checked...
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    You're very welcome! Glad I could help. Watch to...

    You're very welcome! Glad I could help. Watch to see if you get dizzy or lightheaded. If you get dizzy sit down immediately and then get checked by a doctor. I'm glad the market trip went well.
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    I had stitches above my eye once A LONG TIME...

    I had stitches above my eye once A LONG TIME AGO,so I don't remember if it leaked but I would think minor drainage is normal.
  65. Hmmm...I'm not a doctor but the first things that...

    Hmmm...I'm not a doctor but the first things that come to mind are perhaps problems with the spine or a form of Dystonia. Just a thought. Best of luck sir and welcome to brain talk!
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    Very relieved the fluid does NOT have cancer...

    Very relieved the fluid does NOT have cancer cells in it! Does the yellow color of the fluid tell the docs anything about what the fluid is and where the heck it's coming from? Do the tests say...
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    This had me rolling on the floor laughing!...

    This had me rolling on the floor laughing! HAHAHAHAHA! :glee: Great stuff Rose!
  68. Replies
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    Ow! I'm so glad you didn't injure your skull or...

    Ow! I'm so glad you didn't injure your skull or brain! Prayers that it doesn't hurt.
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    Love the photos! And yes the transition to adult...

    Love the photos! And yes the transition to adult Drs is difficult for people with CP too. Good news is there is a large community of adult stroke survivors and many Drs are familiar with stroke in...
  70. Hi Lostparent, I completely agree with what...

    Hi Lostparent,

    I completely agree with what Mary Grace and Rose said. FIND A NEW NEUROLOGIST IMMEDIATELY!!! This is unacceptable. Calling your son DD and then calling the issues “behavioral”...
  71. View Post

    When I was your sonís age I was so scared of Dr appointments that I screamed and cried to high heaven. My toddler mind thought the Drs were trying to kill me with their devices etc. Your son is...
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    "Motherless Brooklyn" trailer

    "Motherless Brooklyn" movie trailer https://www.youtube.com/watch?v=Fru8IkuDp_k I read this book back in like 2010. It was the first time I had ever heard of Tourette syndrome and I fell in love with...
  73. Thanks! Great point! I forgot about...

    Thanks! Great point! I forgot about photosensitive seizures and seizures induced by screens. That was a big issue with the movie "The Incredibles 2" when it came out because the movie uses flashing...
  74. Hi, In regards to the EEG trust your...

    Hi,

    In regards to the EEG trust your instincts about what is too much for him when tests are ordered. In regard to DD, Cerebral Palsy and most neuro conditions that appear in babies and toddlers...
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    I don't know squat about iPads but when my...

    I don't know squat about iPads but when my friends with iPads get this error it is usually that Netflix itself is being glitchy. I pray Jim tells you when he feels pain so he remains pain free.
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