Chicagogirl wrote: ↑Mon May 20, 2024 7:23 am
gettingaheadofit wrote: ↑Sun May 19, 2024 6:14 pm
Dear Lois/Chicago girl,
Thank you SO much for all the time you have invested with your generous, thoughtful, insightful commentary about what you’ve been experiencing and what you have learned. I have been in tears over the anxiety connected to my disclosure visit, (pet scan results etc.) which will be tomorrow.
I was at a gentle yoga class recently and quietly teary-eyed but sniffly since Yoga sometimes unleashes blocked emotions. The poor person practicing next to me must’ve thought I was sick. But she was compassionate - asked if she could get me some tissues (so she wouldn’t hear so much sniffling).
I disclosed to her after class that I had gotten some health news that I was concerned about, and hadn’t really had a chance to process feelings about it much.
It reminds me of a movie of the week TV special when I was in high school when people didn’t discuss cancer much: the name of the movie was “first, you cry.”
I have spent the last hour reading just about everything that was in this thread and this is really helped.
so I *really* appreciate you & the others who have posted here.
I’m new to this forum. In fact, this is my first post. I will read up on things meant for newcomers.
** I’m wondering if the memory tests I’m going to have tomorrow afternoon are some of the same as the previous testing appointment like the shopping list, the paragraph/stories with delayed recall, etc.**
I’m gonna go and see if I can access the CNN Sunday night 8 PM Eastern time special now (May 19) about Alzheimer’s disease research. I learned about that in this forum and I’m very grateful to all of you for posting so much information.
Jennifer in NY
Jennifer
Reading your post brought a tear rolling down my face. It brought back memories of how I felt when I first learned about my APOE4 status. The feeling of being alone and not knowing anyone else who had this, or how to deal with it. Wondering what kind of life, I would have because of this. But you have found your group, your tribe.
I’m not sure what I would have done, if I hadn’t found 4 other ladies in the 2017 Generation’s Trial. It was comforting to know I could call or email someone who was going through what I was. One of them from that trial is in this one (NF52 – Nancy). I am forever grateful to her for her support.
For me, I believe the swim and exercise classes that I do, along with the volunteer work I do helps to keep me sane and not focused on my E4 status. Also, after almost 6 years of knowing and in my 70’s, I feel calm about my status.
I loved your statement from the movie, “First, you cry”. It really hit home. I will have to remember that.
I see where Nevada and Nancy already responded to you about your mental tests today, so I won’t. Except to say, “You got this!” After while the tests seem routine, although I dislike them.
Your comment also reinforced “why” I started this post. To reach out to all who wonder how a clinical trial works and the personal emotions one feels as they go through knowing their E4 status. Let us know the outcome of your visit today. We are with you.
So, welcome to a group, no one wants to be in. Just know we are here to support you as you go through it.
Lois
Thank you for the encouragement, also the reminder that exercise helps in ways other than the obvious. I’m glad I get a Lyft ride to the hospital right from home. I may have them drop me off in the city so I can treat myself & do something fun afterwards.
They pick me up at home and drop me off wherever I want which is nice. They seem to have been mildly amused when they asked what I was going to do after the previous appointments.
I’m answering these very kind replies using quotes because just maybe someone else who is new to the study will be encouraged by seeing what you guys have written.
If someone reading this is new to (or considering) this study, you could go back to the beginning of this thread or topic and read great blow-by-blow accounts from Chicago girl and insightful, helpful comments from several others.
This topic may be fraught with so much anxiety that people may feel a little bit frozen and not reply.
but know that all of you who contribute to this are helping many who may be quietly reading it, and it will be there for others later as well.
Sometimes I’m concerned because my writing’s not what it was, and I remember reading of a prominent person’s speech being compared/analyzed over the years.
Experts said the level of abstraction, ie the grade level of their missives had declined over the years.
But in a book I’ve been reading about the first survivors of Alzheimer’s (Bredesen)
one of the autobiographical essays said that her vocabulary/word retrieval, etc. improved after doing a certain protocol. I’m flooding myself with information now. But is a way that I try to think through & handle things which has served me in the past, even though it looks obsessive.
I may add some of my own commentary because there’s hardly anyone I can talk to about this. I’ve gotten a kind of a sympathetic “Why are you putting yourself through this” sort of reaction, & “it’s common sense - (ie diet exercise sleep) -the other stuff wouldn’t make a difference”.
Of course, this was spoken by someone who had never been a caregiver for somebody doing an excruciating slow fade through AD.
OK I’ll update after this appointment. My study partner/friend is busy but it’s fine that she’s not available. I’m going to record it on my phone. I think I need to process it by myself without somebody sitting there with me, supposedly for support but I who might feel self-conscious around.
with much gratitude for the considerable time you’ve invested to help others, and thanks to anyone else who’s written here as well- I read it all!
Jennifer
