It’s great to hear and see you and I love Wendy’s idea of your reading some of your storyworth stories. You’ve always been a great communicator and I’d say that your pauses here feel like the way you’ve always spoken (usually pausing with a long “and” or “so” between thoughts). It feels like (here and seeing you) you’re slightly more measured and precise in your speech, which may be the disease but comes across to me as just trying to speak more clearly. Really interesting that the essential tremor appeared around the same time as your diagnosis (I think?). I know a few people with essential tremors who don’t have any other neurological issues but I should probably do a little research before saying that. I hope you’ll continue to do both blog and vlog and grateful that you’re welcoming the rest of us into what you’re thinking about and going through. Also, funny about the psilocybin. I’m guessing Jonas was talking about lions mane, which I’ve read about — and it’s also delicious.
Susan, yes to the lions mane, my dad and I had a chuckle after I saw the video once I reinforced that I was not suggesting psilocybin. (Though I will admit there is some research headed toward that concept).
This vlog is such a courageous endeavor. Your willingness to go forward and document as you are, honestly and in the moment is profound. If there were words I could say that would help I would say them in a heartbeat. You have my utmost respect my friend. Love and hugs to you and your family
So nice to see you after so long! I thought you sounded great on this, and your thoughts were clear and organized. I’ll be following you and will continue to be inspired by you ❤️
Thank you for your courage to document what you’re experiencing and I found it interesting to hear you compare speech to writing and then choose to document via speech too. Sure, I categorized your pauses in speech as related to Alz but would not have necessarily done that if I didn’t know that in advance. I had to laugh about your lists. I’m a compulsive list maker- mostly lands on my google calendar so I can just move tasks forward to the next day. If I lost access to my calendar, I wouldn’t know what I’m supposed to do that day or when to be where. I keep a list in notes for questions for my doctor, just like you. Of course, maybe you didn’t used to have to do that. Anyway, thanks for sharing and I wish you a good rest of the week.
ITs great to see you Sean. Thinking of you every step of the way. And I must say, on a sweeter note, the psylocibin thing (first hysterical) and took me back a bit:) and ditto this "Genuinely touoched and inspired by the open and courageous way you have chosen to deal with your diagnosis."
This was a brave experiment and we thought it was great. I agree with your friend Ant that the pauses could have been normal speech patterns; it was only when you said that you'd forgotten what you were going to say that I realized they were different. The written blogs are good because we can go back and reread parts -- harder to do on a V-log -- but a mixture of both, as you feel like it, would be great. And great news about the MRI!!! Much love, Dad and Joan
Hi Sean. Wow. I am so glad you made this video -- and I would like to respond, share some thoughts, yet would prefer to do so-- perhaps via email? Could you share your email address... and thank you.
I appreciate Jonas’s point! I teach a Mushrooms, Molds, and Society class at George Mason University these days, and research on using mushrooms for better mental function (especially lions mane) is something we talk about a lot. (Though I don’t notice a real improvement in my own mental function when I eat them or drink them in teas - I can’t remember things from lists I’ve lost either!)
But at the same time, I’m reading Michael Pollan’s “how to change your mind” book about medically using psilocybin for guided mental exercises for older people with terminal illnesses and the evidence for that helping some people. Anyway, Michael Pollan’s a great writer and I’m very much enjoying his good audiobook when I’m on car rides! ❤️
Been reading, and now watching, your journey with interest and no small amount of trepidation., especially since my medical history seems to be a mirror of yours, with a Type2D diagnosis followed by a stroke (fortunately with ZERO negative aftereffects, so far, many months later). Enough about me...
I thought you presented VERY well - cognizant, aware and focused. I do notice the long-ish pauses, but its very difficult for me to separate what could be life-long speech patterns from what could be Alz effects. You certainly did NOT seem "forgetful" or scattered in any way. Genuinely impressed and inspired by the open and courageous way you have chosen to deal with your diagnosis.
Sending you and Wendy lots of love and encouragement from both Kassie and myself!
I had no idea! My TIA came well before any D2 - I had a heart thing and needed a PFO closure to stop plaques reaching my brain. Different Plaques, I think! :) And thanks for the comments on the video. I notice differences in my cadence, but that could just be the solo camera, which I've not done before. Anyway, it's a long game... Thanks for staying invested! Means a lot. Let me know if there's anything I can do too!
It’s great to hear and see you and I love Wendy’s idea of your reading some of your storyworth stories. You’ve always been a great communicator and I’d say that your pauses here feel like the way you’ve always spoken (usually pausing with a long “and” or “so” between thoughts). It feels like (here and seeing you) you’re slightly more measured and precise in your speech, which may be the disease but comes across to me as just trying to speak more clearly. Really interesting that the essential tremor appeared around the same time as your diagnosis (I think?). I know a few people with essential tremors who don’t have any other neurological issues but I should probably do a little research before saying that. I hope you’ll continue to do both blog and vlog and grateful that you’re welcoming the rest of us into what you’re thinking about and going through. Also, funny about the psilocybin. I’m guessing Jonas was talking about lions mane, which I’ve read about — and it’s also delicious.
Susan, yes to the lions mane, my dad and I had a chuckle after I saw the video once I reinforced that I was not suggesting psilocybin. (Though I will admit there is some research headed toward that concept).
Yeah, my bad. I just immediately go right to "those" shrooms! Ok. I'll look into the Lions Mane. Might help considering I'm a Leo and all.
Hi Sean,
This vlog is such a courageous endeavor. Your willingness to go forward and document as you are, honestly and in the moment is profound. If there were words I could say that would help I would say them in a heartbeat. You have my utmost respect my friend. Love and hugs to you and your family
So nice to see you after so long! I thought you sounded great on this, and your thoughts were clear and organized. I’ll be following you and will continue to be inspired by you ❤️
Thank you for your courage to document what you’re experiencing and I found it interesting to hear you compare speech to writing and then choose to document via speech too. Sure, I categorized your pauses in speech as related to Alz but would not have necessarily done that if I didn’t know that in advance. I had to laugh about your lists. I’m a compulsive list maker- mostly lands on my google calendar so I can just move tasks forward to the next day. If I lost access to my calendar, I wouldn’t know what I’m supposed to do that day or when to be where. I keep a list in notes for questions for my doctor, just like you. Of course, maybe you didn’t used to have to do that. Anyway, thanks for sharing and I wish you a good rest of the week.
ITs great to see you Sean. Thinking of you every step of the way. And I must say, on a sweeter note, the psylocibin thing (first hysterical) and took me back a bit:) and ditto this "Genuinely touoched and inspired by the open and courageous way you have chosen to deal with your diagnosis."
This was a brave experiment and we thought it was great. I agree with your friend Ant that the pauses could have been normal speech patterns; it was only when you said that you'd forgotten what you were going to say that I realized they were different. The written blogs are good because we can go back and reread parts -- harder to do on a V-log -- but a mixture of both, as you feel like it, would be great. And great news about the MRI!!! Much love, Dad and Joan
Hi Sean. Wow. I am so glad you made this video -- and I would like to respond, share some thoughts, yet would prefer to do so-- perhaps via email? Could you share your email address... and thank you.
Sean.Terwilliger@gmail.com
Hi Sean!
I appreciate Jonas’s point! I teach a Mushrooms, Molds, and Society class at George Mason University these days, and research on using mushrooms for better mental function (especially lions mane) is something we talk about a lot. (Though I don’t notice a real improvement in my own mental function when I eat them or drink them in teas - I can’t remember things from lists I’ve lost either!)
But at the same time, I’m reading Michael Pollan’s “how to change your mind” book about medically using psilocybin for guided mental exercises for older people with terminal illnesses and the evidence for that helping some people. Anyway, Michael Pollan’s a great writer and I’m very much enjoying his good audiobook when I’m on car rides! ❤️
Hey Sean!
Been reading, and now watching, your journey with interest and no small amount of trepidation., especially since my medical history seems to be a mirror of yours, with a Type2D diagnosis followed by a stroke (fortunately with ZERO negative aftereffects, so far, many months later). Enough about me...
I thought you presented VERY well - cognizant, aware and focused. I do notice the long-ish pauses, but its very difficult for me to separate what could be life-long speech patterns from what could be Alz effects. You certainly did NOT seem "forgetful" or scattered in any way. Genuinely impressed and inspired by the open and courageous way you have chosen to deal with your diagnosis.
Sending you and Wendy lots of love and encouragement from both Kassie and myself!
Love
Ant
Hey man,
I had no idea! My TIA came well before any D2 - I had a heart thing and needed a PFO closure to stop plaques reaching my brain. Different Plaques, I think! :) And thanks for the comments on the video. I notice differences in my cadence, but that could just be the solo camera, which I've not done before. Anyway, it's a long game... Thanks for staying invested! Means a lot. Let me know if there's anything I can do too!
S