Mon, Nov-05-18, 20:19
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Doing My Best
Posts: 4,924
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Plan: LC/CancerRecovery
Stats: 170/135/130
BF:24%
Progress: 88%
Location: Nevada Desert, USA
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Excuse the long post. Read or ignore. I wanted to explain to my siblings my experience with the EARLY Alzeheimer's Disease Clinical Trial I was accepted into last March. Since I've already written it out in detail there's no need to write it over again and it's quoted below.
Since then I've committed many hours to study and have learned that doctors are utilizing ketogenesis to treat most of the neurological disorders plaguing our present-day society. If you know someone in need of information, these are good to know about :
Las Vegas has a hospital devoted to neurological problems. It's downtown and called The Cleveland Clinic.
Part of the Clinic is the Lou Ruvo Center for Brain Health.
https://my.clevelandclinic.org/depa...ts/brain-health.
Keep Memory Alive is also part of it and there is support for Caregivers as well as patients.
https://www.keepmemoryalive.org/caregivers-community
These are alternative treatments being considered.
https://www.webmd.com/multiple-sclerosis/wahl-diet-ms
https://www.drbredesen.com/thebredesenprotocol
https://www.drperlmutter.com/tag/parkinsons/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321471/
Quote:
May 17, 2018
I'm writing to you to share what has been happening to/with me over the past year.
Because Daddy died of senile dementia (maybe Alzheimer's, as I wasn't privy to his health records) I know first hand what the disease looks like. Having AD in the immediate family is one of the markers. Also, developing AD is one of my own greatest fears.
Last year I found my way to a website (GeneMatch: Connecting Alzheimer's Prevention Studies With Eligible Volunteers). My thought was to make myself available in order to help others who HAVE Alzheimer's or might develop the disease.
After I signed up, I received a test kit (oral swabs) for the APOE-04 gene which pre-disposes a person to developing AD and sent it in. They never tell people the results, but put the info into a database.
I noticed a 5-year Study opening up to test an AD drug and submitted to participate. I got an email. I got a phone call. I got an appointment. I certainly didn't think I had AD, but to qualify for the Study, a person must meet certain surface criteria for being in early stages. There are also the (still unknown to me) results of the DNA test.
Title of the Study: A Phase 2b/3 Randomized, Double-blind, Placebo-Controlled, Parallel Group, Multi-Center Study Investigating the Efficacy and Safety of JNJ-54861911 in Subjects who are Asymptomatic at Risk for Developing Alzheimer's Dementia.
The next 3 months were to be filled with exhaustive mental, blood, physical, psychological and radiological tests. I fully believed I wiould test OUT of the Study (be disqualified,) but I don't want to be a coward. And if I do have AD, as I said before, I will want to continue the Study because AD is a death sentence. Better I should have provided my own data to help future patients. On the positive side, the drug may just help me, too.
I had lots of blood tests, exhaustive memory tests and was scheduled to visit dermatology tomorrow. Then would come an MRI, followed by a PET scan and maybe spinal tap.
If you know me at all, you know I've been studying everything about the disease, alternative cures, everything. I also paid 23andme for my own DNA testing so that I could learn which copies we have of the APOE gene. We are apoE3/apoE3 (one gene from each parent.) We also hit the genetic jackpot, having no markers for any of the 43 diseases tested for carrier status.
I received a call a few minutes ago from the Cleveland Clinic. The Sponsor has cancelled the AD Study because of raised liver enzymes in too many participants. Guess I dodged a bullet on that one. I asked why I'd been chosen in the first place since I'm not apoE4. She told me my advanced age and my father's dementia. I still don't know whether I have amyloid plaques, since they hadn't yet scheduled the MRI or PET scan.
So now you know for yourselves something about our risk for AD and I hope it puts your minds at rest.
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