My wife is in a rare group of people

T

thatguy2

Well-Known Member
Lifetime Member
Aug 18, 2023
795
6,468
93
Kansas
Ownership

  1. 1000-3
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
 
CID

CID

Well-Known Member
Lifetime Member
Supporting Member
Oct 27, 2019
5,421
24,874
113
SE Denver-ish
Ownership

  1. Talon R
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
So sorry to hear that your Mrs. got dealt this card. :( Fingers crossed that she gets the real meds and that they work for her.
 
Last edited:
NTCPrezJB

NTCPrezJB

President of #NTC
Lifetime Member
Supporting Member
Jan 30, 2018
108,692
958,811
113
Canton, OH
Ownership

  1. 1000-5
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
🙏🏻🙏🏻🙏🏻
 
TxDoc

TxDoc

Well-Known Member
Lifetime Member
May 19, 2019
2,211
7,511
113
TEXAS 🇨🇱
photos.app.goo.gl
Ownership

  1. 1000-5
A couple of years ago, I saw where Leqembi received FDA approval and read on Medscape where it slowed the rate of cognitive decline by 27% over 18 months, in early stage Alzheimer's.

I hope and pray that this new drug will be a great thing for y'all. New tests, new preventions and gene therapy treatments are very active, although it is not generally covered by the media.

Positive thoughts, energy and prayers being sent.

Sent from my motorola edge plus 2023 using Tapatalk
 
Buggyman

Buggyman

Well-Known Member
Lifetime Member
Supporting Member
Jan 3, 2020
44,363
358,945
113
ne. ohio
Ownership

  1. 700-2
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
🙏🙏 for you wife and family.
 
advertisement
scttwlsn45

scttwlsn45

Well-Known Member
Supporting Member
Feb 8, 2024
65
359
53
Farmington, WV
Ownership

  1. 1000-3
My mom had Alzheimer’s and I pray you’ll have good results. I hear good things about Alzheimer’s research lately and I’m sure your wife will have a better prognosis than my mom did 15 years ago
 
Remington

Remington

POIDH Enforcement Officer
Lifetime Member
Supporting Member
Jul 24, 2016
20,197
115,494
113
Michigan
Ownership

  1. 1000-5

  2. Talon X
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
Scary disease my friend.
Lost my father to dementia 2yrs ago and my father in law age 87 im afraid is coming down with one of the two. We will know more in the coming months. Have watched a few of my customers deal with spouse that has this. Hoping the best for you and your wife. Stay strong and positive
 
Alan aka Davinci

Alan aka Davinci

Mr. Meme Master
Lifetime Member
Apr 25, 2015
16,789
183,377
113
Grand Junction, CO
Ownership

  1. 500
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
Give her our best and do not give up.
 
Coeus

Coeus

Major General
Lifetime Member
Dec 9, 2019
67,334
650,057
113
Signal Mountain, TN
Ownership

  1. 1000-5

  2. Talon R4 LV
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
🙏🙏🙏🙏🙏🙏
 
NewHere2

NewHere2

Village Idiot In Training
Lifetime Member
Supporting Member
Mar 9, 2020
41,814
344,633
113
High Plains of SD
Ownership

  1. 700-4

  2. 1000-5
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
🙏🏻🙏🏻🙏🏻 for all of you.
 
Alan aka Davinci

Alan aka Davinci

Mr. Meme Master
Lifetime Member
Apr 25, 2015
16,789
183,377
113
Grand Junction, CO
Ownership

  1. 500
My wife has a rare form of Alzheimer's that is genetic and starts in the mid to late 30s. We were lucky to get plugged into the folks at the DIAN Registry. This type of Alzheimer's affects less than 1% of the population. We were accepted into a drug trial. Last Oct we went to Indianapolis as IU was the closest research center accepting patients. After MRIs, PET Scans, a lumbar puncture, and cognitive testing she was given the first dose of Lecanemab. A research nurse comes to our house every 2 weeks to administer it. Last week we went back for the same battery of tests. She became the 80th person in the world that is getting Lecanemab and either E2814 or the placebo. It's double blind so we won't know. Pretty crazy to think how lucky we are to get into this program. Even though it isn't life saving, we hope it helps the next generation.
Sorry to hear that while hoping light at the bed do the tunnel does turn out for you both.
 
advertisement

About us

  • Our community has been around for many years and pride ourselves on offering unbiased, critical discussion among people of all different backgrounds. We are working every day to make sure our community is one of the best.

User Menu

Buy us a beer!

  • Lots of time and money has gone into making sure the community is running the best software, best designs, and all the other bells and whistles. Care to buy us a beer? We'd really appreciate it!

    Beer Fund!

    Club Membership!