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  1. Replies
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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...
  3. 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.
  5. 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!
  7. 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!
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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.
  10. 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...
  11. 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...
  13. 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!
  16. 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...
  17. 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...
  20. 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.
  23. 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!
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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...
  28. 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”...
  29. 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...
  31. 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...
  32. 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.
  34. You’re welcome! Rose is right about seizures not...

    You’re welcome! Rose is right about seizures not always be detected on EEG and some of the links mention this. I think some EEGs are done with sleep deprivation to induce seizures during the EEGs. I...
  35. Hi, Rose is exactly right about the sleep...

    Hi,

    Rose is exactly right about the sleep study. Make sure your son has a sleep study! Has he ever had an EKG or heart ultrasound(in addition to EEG) to determine if the brain is getting enough...
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    Congrats on starting to learn more of the iPad....

    Congrats on starting to learn more of the iPad. When I first got my phone I realized I'm a super slow at texts but I got used to it for short messages and I'm sure you will too. So glad Jim was NOT...
  37. It took awhile to find the name but the other...

    It took awhile to find the name but the other condition I thought your son many have is Dopa responsive dystonia. Dopa responsive dystonia is often mistaken for Cerebral Palsy as you can see in this...
  38. You’re very welcome! Thanks. I’m sorry the Neuro...

    You’re very welcome! Thanks. I’m sorry the Neuro is so fixated on genetic conditions. A good doctor should be looking at all possibilities. Most people I know with neurologic problems have no genetic...
  39. Hi, Welcome to BrainTalk! I have a condition...

    Hi, Welcome to BrainTalk! I have a condition called Cerebral Palsy. Cerebral Palsy and epilepsy often occur together so I'm wondering if your sweet son has a mild form of my disability? My disability...
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    Hi Rose, I’m finally back and able to access...

    Hi Rose,

    I’m finally back and able to access internet. My trip was lovely. It was exactly what I needed and I feel renewed emotionally and spiritually after seeing all the nature. I see I missed...
  41. Thread: Life

    by funnylegs4
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    I'm not a doctor and I don't know how much the...

    I'm not a doctor and I don't know how much the glucose monitors my BF uses cost but not checking your blood sugar is dangerous and I would suggest seeing if you can buy a regular monitor at a...
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    I'm glad the Iron Infusions went pretty well. I'm...

    I'm glad the Iron Infusions went pretty well. I'm so glad Jim has the gist of the iPad now! I knew Jim would get it! Sorry about the possible medication reactions, bad cop experiences and the nose...
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    OH NO! How heartbreaking! I remember catdancer...

    OH NO! How heartbreaking! I remember catdancer on various threads. My condolences to her family and everyone here. My prayers always. RIP dear member of our forum family!
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    Hi Rose, So sorry you had all that iPad...

    Hi Rose,

    So sorry you had all that iPad trouble dear! My friend who had the stroke only said the operation of the iPad itself was easy, meaning after activation I assume, as I didn’t even know an...
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    Hi Rose, You’re very welcome! I have an...

    Hi Rose,

    You’re very welcome! I have an external DVD player/burner combo. The DVD burner part doesn’t work anymore on mine. LOL. I need to buy another one...

    As I said, My friend with the...
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    Hi Rose, No worries. These external drives...

    Hi Rose,

    No worries. These external drives are pretty hardy so I’m sure your current backup is fine. I just wanted to be sure. :) As long as you didn’t see the external drive icon anywhere on the...
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    View Post

    Hi Rose,

    Youíre very welcome! Not sure about tech therapy LOL. However, very important note: After you eject the external drive UNPLUG it!! My external hard drive thinks itís connected if I bump...
  48. Replies
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    Hi Rose, YAY!!! WELL DONE! I’m thrilled the...

    Hi Rose,

    YAY!!! WELL DONE! I’m thrilled the backup is a success! You’re very welcome! Thank you! I’m thrilled to help. I’m glad Angie told you to simply reformat the external drive for Mac as I...
  49. Replies
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    Hi Rose, Here's a screenshot of what it looks...

    Hi Rose,

    Here's a screenshot of what it looks like when my external hard drive is unplugged.5283
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    Hi Rose, You’re very welcome! Always thrilled...

    Hi Rose,

    You’re very welcome! Always thrilled to help! I’m so sorry people are impatient with you about computers and that they make you nervous. No worries. A lot of the software I know how to...
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    Hi Rose, Excellent! So glad you scored an...

    Hi Rose,

    Excellent! So glad you scored an iPad! My friend with the stroke was able to operate an iPad just fine very early on in his recovery when he was still very weak and somewhat out of it,...
  52. Very interesting use of disability simulation. ...

    Very interesting use of disability simulation.

    Laz, I find most FB videos to be fast like that unfortunately.
  53. Replies
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    View Post

    Hi Rose,

    Iím not too familiar with viruses on computers but other people told me flashes could mean a virus. Iím not sure how one gets rid of a virus. Your best bet is to call Apple. If you have...
  54. Replies
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    Hi Rose, The flashes of white and black may...

    Hi Rose,

    The flashes of white and black may mean you have a virus. Old Macs can get viruses whereas the new ones are usually protected. A lot of Mac updates are security updates for that reason....
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    Hi Rose, You’re very welcome! Thank you! I’v...

    Hi Rose,

    You’re very welcome! Thank you! I’v been called a computer geek on more than one occasion and I take the term as a great compliment! You can send me a check. LOL. Kidding!!! I’m happy to...
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    True. Instagram works fantastically as an iPhone...

    True. Instagram works fantastically as an iPhone download and is easy to download. :)
  57. Replies
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    Hi Rose, You’re very welcome! So happy to...

    Hi Rose,

    You’re very welcome! So happy to help. Yes my laptops have all been connected to modems. My black modem box has a blue wire in the back that connects to USB plug on the computer or...
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    Video: Mother with Cerebral Palsy

    Working mother of 3 with spastic diplegia Cerebral Palsy https://youtu.be/UQqTgQNdAvg
  59. Replies
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    Hi Rose, You’re very welcome! I’m so so glad...

    Hi Rose,

    You’re very welcome! I’m so so glad I could help! Thanks! I hate wireless. I actually use my laptop with a modem ethernet connection. (Internet is called ethernet if connected to a wall...
  60. Replies
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    Hi Rose, Thanks so much! You're very welcome!...

    Hi Rose,
    Thanks so much! You're very welcome! You can leave the drive in or unplug it. Your choice. I usually unplug mine and plug it back in when I want to update again. If you un plug you do need...
  61. Replies
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    You’re very welcome Rose. When my old Mac...

    You’re very welcome Rose. When my old Mac wouldn’t update I called Apple and was told the same thing about erasing to completely reboot the entire computer. It proved to be too much of a chore so I...
  62. Replies
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    Hi Rose, About the computer, I get that error...

    Hi Rose,

    About the computer, I get that error even though my computer is no where near as old so I think those types of errors have to do with the web mail site itself or your internet (called...
  63. I knew someone with issues going number 2. She...

    I knew someone with issues going number 2. She brought a plastic container in the car rides with her along with toilet paper. She would "go" into the plastic container by putting it under her bum in...
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    I love the photo of the boys as kids! SO CUTE!!!

    I love the photo of the boys as kids! SO CUTE!!!
  65. Replies
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    Scientists with disabilities celebrated

    https://whyy.org/articles/new-philly-exhibit-celebrates-lives-contributions-of-scientists-with-disabilities/ Exhibit celebrating scientific achievement in the disability community. This made my day...
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    Hi Rose, You’re very welcome! Thanks for the...

    Hi Rose,
    You’re very welcome! Thanks for the prayers! Hoping to maybe have news on that by the end of August. I completely understand. Unfortunately I’v become a bit of a worrier myself after my...
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    Hi Rose, So sorry if I alarmed you! I will...

    Hi Rose,

    So sorry if I alarmed you! I will try to check in more often. I just had a crazy busy week of many many good things (one of which may lead to more money for me, yay!) So I had less time...
  68. Replies
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    So nice to see a new thread dedicated to Jon's...

    So nice to see a new thread dedicated to Jon's memory. I adore the Angel stone! So perfect! I love that you have made such a connection with Nancy. So sorry for my delayed reply!
  69. I’m told by blind people heightened senses is a...

    I’m told by blind people heightened senses is a misconception and that blind people actually just train themselves to use the other senses more effectively out of necessity. These blind people told...
  70. Yes it is my understanding that in some countries...

    Yes it is my understanding that in some countries money has a tactile area for blind people to run their fingers over to see how much cash it is, but in the cash US money all feels the same so blind...
  71. Thanks for posting this! I have many wonderful...

    Thanks for posting this! I have many wonderful blind people in my life so cases like this mean a lot to me. I hope the blind guy wins. This makes me glad I made my website accessible. I know from...
  72. Replies
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    Hi Rose, I can barely function in 105 degrees...

    Hi Rose,

    I can barely function in 105 degrees myself so I’m very impressed Jim is feeling so good! Yay! My prayers are being answered. So glad your emotions are being released. You NEED to cry....
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    Hi Rose, At 4:10 into this video...

    Hi Rose,

    At 4:10 into this video https://youtu.be/5dv7sxfWKmg appears to be something like what you were trying to do for Jim so he could have fruit.
  74. Replies
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    Hi Rose, Again I’m so sorry about your...

    Hi Rose,

    Again I’m so sorry about your father! My BF who is diabetic tells me many diabetics die of heart attacks in the same way as the high sugar destroys vessels of the heart over time....
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    Hi Rose, That’s a terrifying study! I’m so...

    Hi Rose,

    That’s a terrifying study! I’m so sorry again that your father was not tested and died. So glad John visited!
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