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  1. Mystery Diagnosis episode on Stiff Person Syndrome

    In case I or anyone else here didn't post this yet https://www.youtube.com/embed/SFMEnRFx4X0 This episode covers Stiff Person Syndrome and the possible comorbidity of Type 1 diabetes and Stiff Person...
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    Hi Rose,

    I’m glad Jim finally showered and is still off of O2. As for Indian food, I don’t know how to cook Indian food for the life of me but I adore Indian food myself. I have seen “Amy’s”...
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    I thought of this exact same thing when Donna...

    I thought of this exact same thing when Donna wrote this in the other Jim thread!

    Rose you ABSOLUTELY should print everything of value to you on this forum and make copies of everything that was...
  4. Thanks for sharing! I am always interested in all...

    Thanks for sharing! I am always interested in all aspects of how pregnancy effects women and fetuses and this would make sense. The fetus has separate DNA so the mother's body has to take extra steps...
  5. Program for disabled people to learn to be actors

    Following up on the post about Ali Stroker here is a program that is making professional acting classes/lessons available to disabled performers...
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    I had no idea IVIG was a blood product. A lot of...

    I had no idea IVIG was a blood product. A lot of treatments for these types of things including hemophilia have been made artificially in modern times instead of via blood. Many of my friends and...
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    It is indeed scary. This medication shortage is...

    It is indeed scary. This medication shortage is not life threatening to you is it???
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    Yikes! That's awful! Praying for a solution ASAP!

    Yikes! That's awful! Praying for a solution ASAP!
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    I'm so sorry Jim has back pain. Maybe that's why...

    I'm so sorry Jim has back pain. Maybe that's why Jim took so much steroids? Maybe he wasn't confused, but self medicating based on symptoms? I have no idea. I REALLY WISH he had told you sooner. My...
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    Hi Rose, Thank you so much for your lovely...

    Hi Rose,

    Thank you so much for your lovely compliments and support! It means so so much to me! I will keep doing this work as long as I possibly can!

    I agree. Yes! Asians exploded in...
  11. I have no idea exactly what your condition is but...

    I have no idea exactly what your condition is but I have Cerebral Palsy and related spasticity and it causes my toes to cramp. I also have myoclonus, twitches I think...
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    I’m no expert but I think one of the reasons...

    I’m no expert but I think one of the reasons people have to do sleep studies to confirm sleep apnea is because they wake up a lot during the night but have zero memory of doing so. So I think a sleep...
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    You’re very welcome Rose! I completely agree! I...

    You’re very welcome Rose! I completely agree! I was shocked that Ali was the first. I have been to theaters many times in my life and found the theaters to be extremely welcoming to LGBTQAI...
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    Good point. Complex Migraine headaches maybe...

    Good point. Complex Migraine headaches maybe...
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    First wheelchair user to win a Tony

    Ali Stroker wins Tony award to the praise of other disabled performers https://variety.com/2019/legit/news/ali-stroker-oklahoma-tony-disabilities-1203238854/
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    Thanks for answering my question Rose! I guess...

    Thanks for answering my question Rose! I guess the extra steroids kind of did Jim some good then, but as you say you need to be careful and monitor the dose. I wonder if the pneumonia Jim had awhile...
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    It’s great that the paramedic took it upon...

    It’s great that the paramedic took it upon himself to comfort you.
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    Excuse my ignorance, why would more steroids be...

    Excuse my ignorance, why would more steroids be the reason he’s off O2???
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    I'm not a doctor but I'm thinking the breathing...

    I'm not a doctor but I'm thinking the breathing and headaches would be connected to sleep apnea. In sleep apnea you stop breathing a little bit when you fall asleep so your brain gets a little bit...
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    YAY FOR DAY 3 WITHOUT O2!!! I pray it continues...

    YAY FOR DAY 3 WITHOUT O2!!! I pray it continues and Jim remains pain free,

    I love all these stories about Jon and Michael! So wonderful to hear more about their minds and desires. The bit where...
  21. Wow, this article is fantastic! So insightful....

    Wow, this article is fantastic! So insightful. Reminds me of a guy I once spoke to who had attempted suicide and he said

    I'm so sorry you feel this way houghchrst!!!
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    Hi Rose, YAHOOO!!!! WOW! I was jumping up and...

    Hi Rose,

    YAHOOO!!!! WOW! I was jumping up and down in joy for you and Jim! I’m giving you both huge hugs through the computer right now in my excitement! Definitely Michael and Jon planned this...
  23. Thanks Rose! I 2nd everything Rose said....

    Thanks Rose!

    I 2nd everything Rose said. Treat changes to physical appearance and physical functioning as something natural that people adapt to NOT something that is negative or deserving of...
  24. I'm so sorry she fell and her tooth broke. I...

    I'm so sorry she fell and her tooth broke. I would just keep reminding her its a temporary problem if her adult tooth is supposed to grow in soon. How old is she? I think a temporary cosmetic...
  25. So sad but glad the baby survived and what a...

    So sad but glad the baby survived and what a selfless gift. Bless her and the whole family!
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    Hi Rose, I’m a little unsure of the exact...

    Hi Rose,

    I’m a little unsure of the exact details but I think the disabled son(an adult) gave family members other than his mother control over hospice/end of life choices because of the family...
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    What a beautiful thought about the others in the...

    What a beautiful thought about the others in the dream being from BT Mary Grace! That made me tear up!
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    Hi Tick Chick, I have absolutely nothing...

    Hi Tick Chick,

    I have absolutely nothing against hospice in general!!! (My family members have been on it, and it was a good experience which I believe I told Rose and others here in the past)...
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    If the headaches are really bad you should indeed...

    If the headaches are really bad you should indeed go to the ER PLEASE. Severe headaches can be a very bad sign. Just refuse any tests you don't want but also be open minded in case the ER notices...
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    Hi Rose, OMG! This dream had me smiling ear...

    Hi Rose,

    OMG! This dream had me smiling ear to ear for Jon and Michael to be in a beautiful place like that!! I’m so thrilled you got to see your precious angels again! Even though I know it must...
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    Hi Rose, Thank you so very much!! I know my...

    Hi Rose,

    Thank you so very much!! I know my prayers and the prayers of others are what keep my teacher friend alive and functional enough to continue to work. He seems much better now. He’s...
  32. Good point agate. I have loss of proprioception...

    Good point agate. I have loss of proprioception from Cerebral Palsy and have to look at my arms and legs as part of my motor planning. I have also had sensations of things moving when they are not....
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    So glad Jim is eating well! Don't you think you...

    So glad Jim is eating well! Don't you think you should hold onto the O2 tanks for Jim???

    I love hearing about what you and Jon talked about! Jon was very smart and compassionate, that's obvious...
  34. Now that you mention the hemorrhage I should tell...

    Now that you mention the hemorrhage I should tell you it is very possible to have ear hemorrhages too. Your symptoms of ringing and dizziness sound exactly like this post about vertigo and ear...
  35. I heard Parkinson's can cause hallucinating and...

    I heard Parkinson's can cause hallucinating and they have medications for it so hopefully you can get some relief. Your brain might have edema.

    As to the dizziness/numbness/burning that sounds...
  36. I met someone with epilepsy from a meningioma the...

    I met someone with epilepsy from a meningioma the other day. Her seizures sounded a bit like your symptoms. Her seizures are from her temporal lope being irritated.
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    So the woman found out this episode was the...

    So the woman found out this episode was the beginning of epilepsy....
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    Overview of Meningioma

    Interesting video about a type of brain tumor https://www.youtube.com/watch?v=OGK30hz0ldU
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    The part about DNR felt like it stabbed me in the...

    The part about DNR felt like it stabbed me in the heart too. I had one relative on DNR. I'm glad you had the hard discussions and I'm glad that Dr K was a good enough medical professional NOT to...
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    Wow! I had no idea that could happen with Oxygen...

    Wow! I had no idea that could happen with Oxygen masks!!! Now I see why nasal cannulas are more common. Thank you again for your compliments on my films and your lovely message to me!

    Prayers for...
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    Hi Rose, My teacher has informed me he has...

    Hi Rose,

    My teacher has informed me he has been diagnosed with glaucoma and had multiple surgeries to relieve the increased ocular pressures in both his eyes. He rubs his eyes a lot because it...
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    Hi Rose, about Jim's need for portable oxygen, if...

    Hi Rose, about Jim's need for portable oxygen, if I have not mention it before, would this work? https://www.inogen.com I see this portable oxygen machine advertised on TV every 5 moments and always...
  43. Thread: Politics

    by funnylegs4
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    Thanks Rose! I actually thought of Jim's episodes...

    Thanks Rose! I actually thought of Jim's episodes briefly when I saw the tape of Nadler looking so out of it and dizzy. I was going to ask if you had thought it was just plain dehydration. Poor guy....
  44. Thread: Politics

    by funnylegs4
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    Off topic but gosh I hope Nadler gets checked...

    Off topic but gosh I hope Nadler gets checked out. He appeared to have severe low blood sugar or something neurologic....looked exactly like when I witnessed low blood sugar in others.
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    Hi Rose,

    I’m so so glad you and Jim finally talked about what happened the night Jon died. You desperately needed to do this! I’m so relieved you finally let it all out! I was pleading with God...
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    My apologizes. I thought you had been sleeping in...

    My apologizes. I thought you had been sleeping in Jon's room when he passed. My bad. Prayers always for you and Jim and for Jim's health. I'm so glad Jon is so loved by all!
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    Rose, You're welcome! Can you get him a digital...

    Rose, You're welcome!
    Can you get him a digital recorder to record notes? Can you get him books on tape as mental stimulation?
    RE: Salt. I reduced my salt intake after my fainting incident. Get...
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    I'm so sorry this is so painful. You said you...

    I'm so sorry this is so painful. You said you were in close proximity to Jon the night he died and I do not believe Jon felt alone at all. He knew you and Jim were there. He knew he was loved. More...
  49. Thread: Speech

    by funnylegs4
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    One of my physical therapists said "You don't...

    One of my physical therapists said "You don't Breathe. You Die." Breathing is extremely important to anything physical, especially speech. A few people with speech issues I know almost gasp when they...
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    Hi Rose, If you haven’t already tried this...

    Hi Rose,

    If you haven’t already tried this and I haven’t mentioned it before, can you write down what Jim needs to remember? Or even better, have Jim write down dates etc in his own handwriting?...
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    Rose, It took me forever to figure out which...

    Rose,
    It took me forever to figure out which song it was but here it is https://youtu.be/d9wWW9tSEGM It's called "Seven Days Of Lovely" and my friend used to sing this to her miscarried baby when...
  52. Thread: New Member

    by funnylegs4
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    You're welcome! Here's the documentary "Zombie...

    You're welcome! Here's the documentary "Zombie Alligators" https://www.youtube.com/watch?v=7o90Wza9vgw and the study it was created from (I think) https://www.ncbi.nlm.nih.gov/pubmed/20218498...
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    Yay Rose! So glad the bath worked! So glad he's...

    Yay Rose! So glad the bath worked! So glad he's doing better but sorry he's out of breath! Yes home care is always cheaper but insurance does not care and it makes no sense.
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    Hi Rose, Your posts reminds me of a song,...

    Hi Rose,

    Your posts reminds me of a song, unfortunately the name escapes me but the lyrics are

    I’m doing everything for the first time again but without you,
    I pretend I’m okay but it aches...
  55. Thread: New Member

    by funnylegs4
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    Hello, welcome to the forum! I don't know...

    Hello, welcome to the forum!

    I don't know anything about Parkinson's but low magnesium, low vitamin B, and low blood sugar in diabetics can all cause neurologic symptoms. I once saw a documentary...
  56. Thread: Speech

    by funnylegs4
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    Thanks agate! I’m not sure if you saw my...

    Thanks agate! I’m not sure if you saw my discussion in the huge politics thread but I can speak English, speak some Russian, and I can only understand Spanish, French and Italian to some degree. I...
  57. "Speechless" has been cancelled....

    "Speechless" has been cancelled. https://deadline.com/2019/05/speechless-canceled-abc-three-seasons-minnie-driver-1202605937/ https://twitter.com/micahdfowler/status/1126931076201558018 I kinda...
  58. Thread: Speech

    by funnylegs4
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    Yes Rose, like I said above I know someone that...

    Yes Rose, like I said above I know someone that stutters and he said the best thing for the stutter is for him to keep talking because it reinforces the neuroplasticity etc. Or like how I need to...
  59. Thread: Speech

    by funnylegs4
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    What your describing about not being sure if...

    What your describing about not being sure if people said a particular thing sounds like what happens to me when I try to understand other languages and answer back in languages other than English...
  60. Thread: Speech

    by funnylegs4
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    Can you try speech therapy? Would a singing or...

    Can you try speech therapy? Would a singing or public speaking class help? I can't carry tunes either. No breath control from CP. My Spanish sounds like nails on a chalk board too.
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    CP/SDR surgery essay

    Great essay on Cerebral Palsy, the origins of spasticity and SDR surgery https://www.hippocampusmagazine.com/2019/05/the-science-that-set-me-free-by-kerry-benson/
  62. Thread: Speech

    by funnylegs4
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    I think what your describing is nervousness,...

    I think what your describing is nervousness, being out of practice talking, and MS related. I have Cerebral Palsy and when I tried to speak up in college I would stutter or slur because of my...
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    Hi Rose and Howie, Not to discount anyone's...

    Hi Rose and Howie,

    Not to discount anyone's experience or start a political argument, but I know someone who grew up in the UK who said the UK has an awful one-size-fits all type situation where...
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    I don't take much stock in "cure" stories but if...

    I don't take much stock in "cure" stories but if people are symptom free I'm of course happy.
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    Hi Rose, Thank you so much!!! Yes you...

    Hi Rose,

    Thank you so much!!! Yes you absolutely answered my questions. I’m so sorry your boys endured such pain! My only knowledge of seizures comes from a lovely woman with epilepsy who told me...
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    WOW! This is a new one on me. Thanks agate and...

    WOW! This is a new one on me. Thanks agate and Rose! Moral of this story: DRINK WATER.
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    Tamie and Rose, Out of curiosity what is this...

    Tamie and Rose, Out of curiosity what is this “code”?? I have never heard of anything like that. I don’t like that because if parents of babies with CP start seeing false stats saying people died of...
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    Wow! An infection caused you to get that...

    Wow! An infection caused you to get that disoriented?!!! Are you diabetic???! How scary! So glad you are okay!


    Thanks again everybody for the prayers! My friend and his family seem to have...
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    Hi Rose, Thanks for understanding!!! Not...

    Hi Rose,

    Thanks for understanding!!! Not trying to bring up bad memories, sorry, but I just found an old thread where you and I discussed the possibility of Jon having Cerebral Palsy and the use...
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    Hi Rose, I have a rail and a seat in my...

    Hi Rose,

    I have a rail and a seat in my bathroom near my tub, bought from home shopping to help with my mobility and to ensure I could get into a safe position if I ever become dizzy again. My...
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    Hi Rose, I know you are in emotional pain so...

    Hi Rose,

    I know you are in emotional pain so please, please excuse my venting here. The Cerebral Palsy diagnosis and “cause of death” REALLY TICKS ME OFF!!! Nobody and I mean NOBODY dies of...
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    Thanks so much everyone! He is sheltering in...

    Thanks so much everyone! He is sheltering in place with his family. I wish he never went to India but I guess the only sliver lining here is he’s a big strong guy who can assist his elderly family...
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    I'm so so glad you are okay! Thanks for updating...

    I'm so so glad you are okay! Thanks for updating us!

    On the subject of natural disasters I have a wonderful best friend that was born in India who I have likely mentioned in previous posts about...
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    Hi Rose, Cool that Jon got to ride shotgun in...

    Hi Rose,

    Cool that Jon got to ride shotgun in a way! So sorry about the rash! Stress rashes are actually super common and I say again to just let your emotions out or the rash will re appear...
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    Hi Rose, My apologies for not understanding...

    Hi Rose,

    My apologies for not understanding how cramped things are over there! I’m glad Jim’s vitals are better when he is upright. It could be that Jim is retaining fluid partly because of lack...
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