My wife is in a rare group of people

[Hoosier1960]

Yesterday was another infusion day.View attachment 438499

Keep up the good fight!

 

[Admin]

 

[MiniRF]

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.

🙏🙏🙏

 

[thatguy2]

Got notified my BIL has been placed in hospice. He is in the late stages of this awful disease.

 

[TxDoc]

Got notified my BIL has been placed in hospice. He is in the late stages of this awful disease.

I'm sorry to hear this. But, she is in the care of people who can give her the best management of her health and well-being. It's a blessing to have people available like this, now.
‍🩹

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[Hoosier1960]

Got notified my BIL has been placed in hospice. He is in the late stages of this awful disease.

I am so sorry to hear this. You had enough on your plate already. 🙏🙏🙏 for all involved.

 

[thatguy2]

Just got back from our 1 yr checkup at IU. She has of course lost some cognitive function, but her brain scans look really good. Many new treatments coming onto the scene.

 

[Fatsquatch]

Just got back from our 1 yr checkup at IU. She has of course lost some cognitive function, but her brain scans look really good. Many new treatments coming onto the scene.

🙏🏻🙏🏻🙏🏻

 

[TxDoc]

Just got back from our 1 yr checkup at IU. She has of course lost some cognitive function, but her brain scans look really good. Many new treatments coming onto the scene.

Thank you for the update. Hope and prayers to follow ‍🩹

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[-Bear-]

Good afternoon NTC family!

Good afternoon Smitty!

 

[Hoosier1960]

Good afternoon Smitty!

Good afternoon Bear, but I’m not Smitty

 

[-Bear-]

Good afternoon Bear, but I’m not Smitty

I know, it was a joke cause you posted "Good afternoon NTC" in a non NTC thread. Smitty used to do that all the time. I see you deleted the post now

 

[Hoosier1960]

I know, it was a joke cause you posted "Good afternoon NTC" in a non NTC thread. Smitty used to do that all the time. I see you deleted the post now

lol good to know

 

[thatguy2]

Wife had a seizure new year's eve and they stopped her Alzheimer's meds after the MRI at our local hospital found multiple microhemmoraghes. After a month they sent us to Springfield, MO (3.5 hr drive each way) for a 10 minute brain scan. It did not see what the local MRI showed so she is going back on the meds Feb 20th. She is now on anti seizure meds as well. She is a bit of a train wreck most days but we are just trying to make the best of it.

 

[Smitty335]

Wife had a seizure new year's eve and they stopped her Alzheimer's meds after the MRI at our local hospital found multiple microhemmoraghes. After a month they sent us to Springfield, MO (3.5 hr drive each way) for a 10 minute brain scan. It did not see what the local MRI showed so she is going back on the meds Feb 20th. She is now on anti seizure meds as well. She is a bit of a train wreck most days but we are just trying to make the best of it.

Prayers.

 

[GRANITE]

Cancer sucks. prayers for everyone dealing with it!

 

[CID]

Sorry this is happening to you, prayers sent - 🙏 🙏 🙏

 

[Smitty335]

There is this strange woman living in my house, she is a Right Winger through and through. When I married her 43 years ago she was a liberal. Now she talks of Trump and how she approves of him. I don't know how to talk to her. HA!

 

[Fatsquatch]

Wife had a seizure new year's eve and they stopped her Alzheimer's meds after the MRI at our local hospital found multiple microhemmoraghes. After a month they sent us to Springfield, MO (3.5 hr drive each way) for a 10 minute brain scan. It did not see what the local MRI showed so she is going back on the meds Feb 20th. She is now on anti seizure meds as well. She is a bit of a train wreck most days but we are just trying to make the best of it.

🙏🏻🙏🏻🙏🏻

 

[JenElio]

Wife had a seizure new year's eve and they stopped her Alzheimer's meds after the MRI at our local hospital found multiple microhemmoraghes. After a month they sent us to Springfield, MO (3.5 hr drive each way) for a 10 minute brain scan. It did not see what the local MRI showed so she is going back on the meds Feb 20th. She is now on anti seizure meds as well. She is a bit of a train wreck most days but we are just trying to make the best of it.

🙏🙏🙏

 

[Todd627]

Wife had a seizure new year's eve and they stopped her Alzheimer's meds after the MRI at our local hospital found multiple microhemmoraghes. After a month they sent us to Springfield, MO (3.5 hr drive each way) for a 10 minute brain scan. It did not see what the local MRI showed so she is going back on the meds Feb 20th. She is now on anti seizure meds as well. She is a bit of a train wreck most days but we are just trying to make the best of it.

🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼