CAD106 and CNP520

Insights and discussion from the cutting edge with reference to journal articles and other research papers.
lol
Contributor
Contributor
Posts: 194
Joined: Wed Oct 30, 2013 6:25 am

Re: CAD106 and CNP520

Postby lol » Fri Mar 31, 2017 12:11 pm

It is rainy and dreary today, so here I am posting again.

OK. Don't want anyone to think my day after shot day was horrific. It wasn't. I was just wiped out. Back to normal now.

Also, we are in the beginning stages of this study. And - so is everyone else. Naturally, organization will improve as the study goes along. People coming into the study a year or 2 from now will have it easy peasy lemon squeezy. We are the pioneers! :)

NF52
Support Team
Support Team
Posts: 861
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: CAD106 and CNP520

Postby NF52 » Sat Apr 01, 2017 7:10 am

Welcome, P45VA! I too am in the Georgetown site Generations Study, and want to welcome you warmly to the group of us who have enrolled in this study and are on this ApoE4.info site.

When you say you haven't started in the "second phase" of testing yet, do you mean you haven't met with the Georgetown team yet? I'm guessing that Gene Match notified you of a match with Georgetown and a link to the video? If so, Wesley Horton, the study coordinator at Georgetown, will probably call you soon to set up the initial meeting of what's really a pre-study phase. He and the nurses at that first meeting will be able to answer your questions at that first meeting about whether your friend could be your partner, or if it needs to be your daughter. At that point, you can decide what to do.

I do think it's important that you and your kids have accurate information about the lifetime risk if/when you talk to them. You could give them the packet you'll get at the disclosure meeting; it's basically a Powerpoint printout with easy-to-digest points. By the way, a study just came out of 17,000 people followed for decades, suggesting that the lifetime risk of AD for someone with 3/3 is about 10-15%; for 3/4s about 20-25%, and for 4/4's it's 30-55%.(https://www.endalznow.org/press/study-e ... rs-disease). Your kids may have lots of healthy factors (diet, exercise, education) and years of future research like this study that will mitigate their risk to far less than 20-25%.

If you talk to them, please let them know not to trust Google search results saying that ApoE 4/4s have 9 to 12 times the average risk factor, which makes it look like our risk is 120%! The first Google Scholar article I read after learning my results 3 years ago was from the 1990's, and said that the "average" 4/4 person was diagnosed with Alzheimer's at age 68. Talk about a body blow! I was about to turn 62. Well, of course, that is a completely inaccurate statistic, drawn from looking only at people with Alzheimer's and 4/4 status and asking "when were they diagnosed?" It's like finding out that 90% of prison inmates have a history of childhood brain injury (reportedly true) and extrapolating to conclude that 90% of children with brain injury will end up on prison (having worked with hundreds of kids with moderate to severe brain injury, I know that 95% of them ended up back in their previous school placement with proper rehabilitation.)

It does take a while to gear up, since there's a protocol the study sites go through to make sure you're ready, willing, and able to participate in what is a 5 year study--with a "bonus" available at the end of that for up to 3 more years of monitoring! Your study partner does not have to go to every meeting. One before you start, one the day you start, and then about every six months I think.

Just out of curiosity, are you familiar with the Georgetown Hospital site? If you want to avoid driving in D.C., there's a Georgetown shuttle bus on the Massachusetts and 20th St corner a block from the Dupont Metro station. It will take you to the University, and at the shuttle drop-off there's a mini-shuttle (either a small bus or a golf cart) that comes every 10-15 minutes that take you the last 1/2 mile to the Pasquerilla building, a quick walk from the Main Hospital entrance # 2) Here's a link to helpful maps, etc. https://www.medstargeorgetown.org/for-p ... nd-parking.

Happy April everyone!
4/4 and still an optimist!

lol
Contributor
Contributor
Posts: 194
Joined: Wed Oct 30, 2013 6:25 am

Re: CAD106 and CNP520

Postby lol » Sat Apr 01, 2017 11:12 am

Wonderful post, NF52.

NF52
Support Team
Support Team
Posts: 861
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: CAD106 and CNP520

Postby NF52 » Sat Apr 01, 2017 11:32 am

Thanks, lol, my friend. The process can be confusing. I didn't realize until last Wednesday that I was still on for Friday for the FDG PET, and then got a phone call from the PET center on Thursday AM about the protocol to follow a low-carb diet for 24 hours before my 7:45 AM appt. Luckily I had read about that while looking up FDG PETs. I also wore my basic no zipper gym outfit (think polyester) with my LL Bean "walking while drenched" rain jacket, so was quite the fashion plate. Now that I know that the PET scan doesn't have the magnetic issue (should have realized it wasn't in the acronym) I may dress to the nines for Monday's amyloid scan.
Love your "easy-peasy, lemon-squeezy-lol" view of life.
4/4 and still an optimist!

P45VA
Contributor
Contributor
Posts: 11
Joined: Thu Mar 30, 2017 6:35 pm

Re: CAD106 and CNP520

Postby P45VA » Sun Apr 02, 2017 10:12 am

Thanks NF 52 for your informative post! Yes, I have already met with the team at Georgetown, Westley, Brigid Reynolds, and Margaret Bassett about 2 weeks ago. They informed me that I was 4/4 and that I'd get calls from Westley re my mood, etc. I've had 1 such call so far. Do I need for them to call me to set up the next appointment for additional screening, or do I need to initiate it? Do I need to have several more mood calls with Westley first?

I'm fortunate to live in No. VA and so the commute to Georgetown is pretty easy, in non-rush hour traffic and since I'm retired I hope to schedule most of my appointments at such times.

Thanks again for your help. So glad to meet someone who is going through this a bit ahead of me.

NF52
Support Team
Support Team
Posts: 861
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: CAD106 and CNP520

Postby NF52 » Sun Apr 02, 2017 11:10 am

Hi P45VA,
I'm glad you got to meet with Wesley, Brigid and Margaret. You don't need to call them; Wesley will probably call you any day now to schedule an appointment to have the EKG, blood test and urine sample and one additional cheek swab to confirm the 4/4 status. You'll also have some basic cognitive tests then, nothing to study for. They'll want your study partner for that meeting, for the consent discussion and to give them something to check your memory. Your partner signs agreeing to be in that role also. Margaret or Brigid will probably email you a consent form to send and mail or fax back to get your Dr's latest medical records.
When Wesley called me, we also scheduled the required MRI and amyloid PET scan. He has "reserved" available times for the MRI, but has to confirm PET scans with the nuclear medicine dept.
Glad you have an easy commute!
4/4 and still an optimist!

lol
Contributor
Contributor
Posts: 194
Joined: Wed Oct 30, 2013 6:25 am

Re: CAD106 and CNP520

Postby lol » Tue Apr 04, 2017 10:02 am

NF52, glad you got Friday out of the way. How did it go? Most importantly, Happy Birthday!
You doing okay, Mardi?
P45VA, keep us posted.

NF52
Support Team
Support Team
Posts: 861
Joined: Tue Oct 25, 2016 9:41 am
Location: Eastern U.S.

Re: CAD106 and CNP520

Postby NF52 » Tue Apr 04, 2017 10:33 am

Hi lol,
Thanks for the birthday wishes. Friday and yesterday both went fine--I fell asleep in both the FDG and Amyvid scans. My sister who believes in reincarnation would probably tell me that being comfortable in that setting means I spent a previous life having my forehead, chin and arms bound, maybe as an old-fashioned nun with the head garb? Friday I also got to see some of the Natural History Museum (with thousands of others looking for respite from a drenching rain) and yesterday saw the Botanical Gardens and the Museum of Native American History (great Inca exhibit). I figure I'm combining possible intervention with social, spatial and lexical learning every time I go to D.C.!
Mardi and you should check out the Announcement posting--someone from the Wall St. Journal wants to do a story on the Generations Study and its impact on us. Don't think I'm up to announcing myself to the world--and I haven't even gotten to the starting gate yet. But the interest from the WSJ is noteworthy.
4/4 and still an optimist!

User avatar
SusanJ
Senior Contributor
Senior Contributor
Posts: 2623
Joined: Wed Oct 30, 2013 7:33 am
Location: Central Colorado

Re: CAD106 and CNP520

Postby SusanJ » Tue Apr 04, 2017 12:38 pm

NF, oh, you make me want to visit DC again!

Re the WSJ, I'm sure you could remain anonymous when talking about your experience. I'd sure make it a requirement!

Mardi
Contributor
Contributor
Posts: 8
Joined: Mon Jan 02, 2017 8:41 am

Re: CAD106 and CNP520

Postby Mardi » Tue Apr 04, 2017 6:39 pm

HAPPY BIRTHDAY NF52

WELCOME P45VA

Haven't posted much lately. I'm volunteering 2-4 days a week preparing taxes through AARP Tax-aide program. By the end of the season I am usually ready to swear off taxes, but always seem to go back the next year (this is my 9th year).

P45VA.... I found out about my e4 status through the generation study. Was kind of surprised.... but not really. My mom had dementia and now I know what my dad was experiencing was probably dementia also. My husband and I talked about it and we sat down with our daughter (who is 26) and told her about it. Since my husband hasn't been tested, it gives her a chance to believe it is e4/e3 (maybe). I haven't pushed her to find out yet, but will at some point. Told my sister who lives in another state about it. Our relationship isn't the best, but her belief about everything is you just take herbs and it makes everything go away.

So welcome to the group. I imagine we will develop into a great support group for each other as we go down this journey.
Apoe 4/4 ;)


Return to “Science and Research”

Who is online

Users browsing this forum: ApropoE4, Plumster and 5 guests