Raymond and Rubinstein-Taybi Syndrome Part 2
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- Опубліковано 22 сер 2024
- A second visit with Raymond and Claretta reveals how Raymond's first video was instrumental in his healing when unresponsive in the hospital with pneumonia during the Covid pandemic.
Raymond's face at 6:36 gives me life!! He is such a joy 🥰!
Kiana - you are so right! Thank you!
Julie -- this is so great! You are increasing awareness and understanding of disabilities which is so helpful for us all!! Love that you had Raymond on your show and that it helped him in his healing and with hospital staff care!! BRAVO 👏🏼👏🏼👏🏼 Keep up the good work!!
By the way-- I love that your bird wants to be on the show too 😆🤣! You are a natural as a host! Also -- to let you know -- I have several of Raymond's original recordings (at least 4 songs) if you want to share them with everyone 😉👍
@@stephmserna oh heck yeah! Maybe we can all three get together for a interview? I also want to interview you Steph. I have been meaning to email you. I will text later to see if I have all updated info. Thank you for commenting here 🙏
raymond, so glad you’re doing well now and claretta, you’re a great advocate and caregiver! even though it was on a serious topic. this video cheered me up and inspired me. this is such a great tip for anyone who has a loved one in the hospital or another similar facility (e.g. a rehab place) to keep access to a video of the individual in [recent] well times because just on paper (i.e. diagnoses) or by current functioning - out of their normal environment or due to illness or like claretta mentioned, lack of familiar people, this individual may not be acting himself and may need a different approach to help them respond. furthermore, it’s scary that actually these issues in these situations could even mask other problems (i.e. assumption that due to primary diagnosis, the individual is incapable in someway that that in fact usually are not but that would not otherwise be known) and could lead to misdiagnosis, poorer outcomes, or prolonged inpatient status, among other things. for example, it is a common phenomenon for geriatric patients to present with cognitive symptoms just due to infection (e.g. uti). also common is for senior citizens, particularly those with dementia, to withdraw or exhibit cognitive dysfunction with [prolonged] hospital stays even if their proper functioning and environments wouldn’t predict that. also what if someone like raymond didn’t have a video of him acting his normal way and the hospital staff weren’t able to recognize a bigger or different problem that they assumed was part of his disability but which was actually due to an illness of issue he couldn’t communicate or that wasn’t presenting typically or obviously (e.g. what if his state of consciousness was decreasing due to hypoxia or blood loss or stroke or something bug it was taken as him being in his “normal” vegetative state, as claretta put it - which it turns out would be so far from the truth). anyway, food for thought and thanks for sharing! sorry for such a long post but thanks for reading if you did apologies as well for the liberal use of ‘e.g.’ oops! thanks for the inspiring posts, julie!
Thank you so much for commenting and validating with such articulation - you made me cry! I really want to call attention to the benefit of this type of video. I would like to do another video on this - or strictly audio for the podcast. You speak as if you have real experience with this. If you are willing, I would love to talk with you more about this, and interview you if you are comfortable with that. Please let me know juliereister@mac.com. No hard feelings if you decline. Thank you again for your long post, complete with the e.g.'s! 😄
Wow Raymond reminds me of my friend Matthew Dolmage. Thank you for making this video ❤ I have similar career experience and I'm very interested in the work your doing. my name is Wayne MacNeil and I live in Orangeville Ontario Canada and if Raymond is looking to talk to people I would love to be his friend. Yours as well.
Shotcaller71 and BEAKERBOT, you are so wonderful for sharing here! Thank you for seeing Raymond's light - he really is a spectacular man and great friend. Shotcaller71, I would love to hear more about what you do! My email is in transition right now, so it may take a minute but it's juliereister@mac.com
BEAKERBOT, thank you for sharing about your brother, and thank you for seeing the Brilliance that is Raymond. I am sorry you lost him, but so happy you had him. You clearly saw Matthew's magic. I wish I had met him.
Thank you for sharing this story 🙏❤