HEY SEAN, GLAD TO SEE YOUR BACK BLOGGING AND FILLING US ALL IN WITH YOUR JOURNEY THESE PAST FEW WEEKS. YOU HAVE A FULL SCHEDULE FOR SURE. YOUR MESSAGE ABOUT HOLDING THE MEDICAL PEOPLE ACCOUNTABILE IS A MESSAGE THAT NEEDS TO BE SHARED FOR SURE. I KNOW THAT YOUR EFFORT IN WRITING YOUR BOOK WILL PROVE TO BE SO HELPFUL TO BOTH YOU AND MANY OTHERS THAT WILL READ IT ONCE IT GETS PUBLISHED. THE WARRIOR IN YOU CONTINUES TO FIND A WAY TO MAKE A DIFFERENCE. MARY
You and Wendy have been very very busy, all for the good. Congrats re SSDI finally coming through. What a slog. I can't wait to see how your book unfolds. So exciting!! Much love and respect.
Sean, I appreciate your blog post especially two parts: (1) the mention of the lack of awareness and empathy of the staffer in your doctors office, and (2) your comments around the ability to pave your own path to death (as you and I mentioned on the Alzheimer's podcast).
For the first topic - lack of awareness, empathy and literal education when it comes to cognitive decline is a huge issue that is just a ripple effect for everyone. I'll share two stories quickly here (one I've publicly shared, the other I haven't) --> first my mom's geriatric doctor recommended that we take my mom off Aricept last year with the rationalization that at her stage of Alz the drug wasn't helping her; so we did; mom declined like a rock, we put her back on the drug; she stabilized but we lost time with her down the road. This was a doctor in the UCONN center of aging - I called and told them they took time away from us. --> second is that I have advocated to have memory tests during my physicals; in my last physical a medical staffer conducted the test; the staffer was in a bad mood and didn't know how to draw a face of a clock (I saw her try to distract me so she could look it up); I dropped two points on the test and could get a referral for a full neuro-psych exam ...... 18 months after my physical - I accepted that and moved on; about 2 months later I attended a networking event for my job and a neurologist was sharing advances in Alz treatment - he stated that you can get the blood test any time (not true if you have health insurance - they don't do anything with out red tape) & that it has really been available for ages; this said, I, huddled with him after the event and told him I lost two points on my SLUMS in January and don't have an appt until May 2026 - what gives???? we DO NOT HAVE TIME TO WASTE - he said he would look into what he can do - his office called me, I saw him, I have had my blood test and the contrast MRI of my brain - I don't see him until Christmas Eve (merry Christmas to me!!!) for the full results --> it's better than starting the process in May 2026. Also as an aside I called my doctors office and told them that the gal that administered the SLUMS evaluation should NEVER have been in the position to do so - she was NOT TRAINED correctly.
Drum roll - ALL clinicians, front office/back office, need training!!!!
The Second topic - die with dignity - this is a topic that tugs at my heart, both being my others appointed power of atty for both $$ and health/medical and knowing that I don't have children that will care for me as I age (not knowing what my cognitive health looks like until my Christmas Present appointment this year) - how can I plan for my own final chapter. It is a slippery slope and I agree with you that the topic can NOT be shied away from.
Thank you for posting your journey. With peace and kindness, Tonya Maurer
HEY SEAN, GLAD TO SEE YOUR BACK BLOGGING AND FILLING US ALL IN WITH YOUR JOURNEY THESE PAST FEW WEEKS. YOU HAVE A FULL SCHEDULE FOR SURE. YOUR MESSAGE ABOUT HOLDING THE MEDICAL PEOPLE ACCOUNTABILE IS A MESSAGE THAT NEEDS TO BE SHARED FOR SURE. I KNOW THAT YOUR EFFORT IN WRITING YOUR BOOK WILL PROVE TO BE SO HELPFUL TO BOTH YOU AND MANY OTHERS THAT WILL READ IT ONCE IT GETS PUBLISHED. THE WARRIOR IN YOU CONTINUES TO FIND A WAY TO MAKE A DIFFERENCE. MARY
You and Wendy have been very very busy, all for the good. Congrats re SSDI finally coming through. What a slog. I can't wait to see how your book unfolds. So exciting!! Much love and respect.
Sean, I appreciate your blog post especially two parts: (1) the mention of the lack of awareness and empathy of the staffer in your doctors office, and (2) your comments around the ability to pave your own path to death (as you and I mentioned on the Alzheimer's podcast).
For the first topic - lack of awareness, empathy and literal education when it comes to cognitive decline is a huge issue that is just a ripple effect for everyone. I'll share two stories quickly here (one I've publicly shared, the other I haven't) --> first my mom's geriatric doctor recommended that we take my mom off Aricept last year with the rationalization that at her stage of Alz the drug wasn't helping her; so we did; mom declined like a rock, we put her back on the drug; she stabilized but we lost time with her down the road. This was a doctor in the UCONN center of aging - I called and told them they took time away from us. --> second is that I have advocated to have memory tests during my physicals; in my last physical a medical staffer conducted the test; the staffer was in a bad mood and didn't know how to draw a face of a clock (I saw her try to distract me so she could look it up); I dropped two points on the test and could get a referral for a full neuro-psych exam ...... 18 months after my physical - I accepted that and moved on; about 2 months later I attended a networking event for my job and a neurologist was sharing advances in Alz treatment - he stated that you can get the blood test any time (not true if you have health insurance - they don't do anything with out red tape) & that it has really been available for ages; this said, I, huddled with him after the event and told him I lost two points on my SLUMS in January and don't have an appt until May 2026 - what gives???? we DO NOT HAVE TIME TO WASTE - he said he would look into what he can do - his office called me, I saw him, I have had my blood test and the contrast MRI of my brain - I don't see him until Christmas Eve (merry Christmas to me!!!) for the full results --> it's better than starting the process in May 2026. Also as an aside I called my doctors office and told them that the gal that administered the SLUMS evaluation should NEVER have been in the position to do so - she was NOT TRAINED correctly.
Drum roll - ALL clinicians, front office/back office, need training!!!!
The Second topic - die with dignity - this is a topic that tugs at my heart, both being my others appointed power of atty for both $$ and health/medical and knowing that I don't have children that will care for me as I age (not knowing what my cognitive health looks like until my Christmas Present appointment this year) - how can I plan for my own final chapter. It is a slippery slope and I agree with you that the topic can NOT be shied away from.
Thank you for posting your journey. With peace and kindness, Tonya Maurer