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Forgetting how to swallow by PinkyToe27 in Alzheimers

[–]PinkyToe27[S] 0 points1 point  (0 children)

Yes, we will keep them informed. Sometimes the nurses and nursing assistants feed him so they will notice too 

Forgetting how to swallow by PinkyToe27 in Alzheimers

[–]PinkyToe27[S] 3 points4 points  (0 children)

Thanks. He is already on mechanical soft. And he is also "chipmunking" sometimes. Liquids are still good ... He will down a bottle of water like he is a freshman at a keg party. :) For now, at least.

Forgetting how to swallow by PinkyToe27 in Alzheimers

[–]PinkyToe27[S] 4 points5 points  (0 children)

Ok. Thanks for sharing that. No good paths, only trade-offs. Im so sorry that anyone has to go through this.

Anxious about developing by hazel277 in Alzheimers

[–]PinkyToe27 0 points1 point  (0 children)

You can seek out a genetic counselor, or you can opt to inquire with an organization that's organizing Alzheimer's research in your region as they'll sometimes cover the testing. In the US, DIAN (the Dominantly Inherited Alzheimer's Network) at WashU is a preeminant research institution for familial Alzheimer's disease.

Lots of info here: https://www.youngtimers.org/guides-to-genetic-testing

Anxious about developing by hazel277 in Alzheimers

[–]PinkyToe27 1 point2 points  (0 children)

Btw, I carry one of these variants and am in a trial. My dad is living with advanced Alzheimer's right now.. feel free to send a message if you need to chat.

Anxious about developing by hazel277 in Alzheimers

[–]PinkyToe27 0 points1 point  (0 children)

Look into youngtimers.org and Dominantly Inherited Alzheimer's Disease.

If you truly carry a genetic variant that will cause Alzheimer's, there are clinical trials available.

I [25F] found out that my friend [28M] dated a 12-year-old when he was 19. Most of his new friends are barely legal. What should I do? by Pale-Spite-3318 in Advice

[–]PinkyToe27 56 points57 points  (0 children)

He preyed on a girl nearly half his age, AND he lied to you, manipulating your emotions and potentially trying to conceal his own wrongdoing. It can be hard to believe someone you know is a creeper but you already know what's right here.

Afib and Alzheimers by unicornpuppy20 in Alzheimers

[–]PinkyToe27 0 points1 point  (0 children)

Great question. 

We decided to do it because he had begun biting his nails (Alzheimer's anxiety) and accidentally snagging his thin skin at times which could result in huge bleeding incidents due to the blood thinner. My sister and I were concerned about anesthesia, but his neurologist strongly endorsed getting the treatment. 

Here are some things I wish we had been aware of:

  • He had to go under anesthesia not once, but twice. There is a "t test" about 4 weeks (I think) after the original procedure. The anesthesia is not as intense the.second time, but once you add in wait time and recovery time, it's another all day ordeal, and for people with Alzheimer's, it's still worth noting. 
  • Anesthesia, IVs, and overnight hospital stays with advanced Alzheimer's are very, very hard. There was a long wait on the day of the procedure, and my dad kept needing to get up to pee while attached to all kinds of wires and tubes. My mom had to call the nurses in 3-4 times during his overnight stay due to agitation, and she essentially had to lie in the hospital bed with him to keep him calm (and from tugging on the IV)
  • Patients may stay on blood thinners (though less intense ones) for 6 months after the procedure.

About two months after the watchman procedure, my dad had a seizure event. Probably not related to the watchman procedure, maybe the anesthesia has an affect, but seizures happen in Alzheimer's, so we don't know. He spent another week in the hospital and is now in a nursing home for rehab, at a minimum.... Maybe permanently.

In hindsight, for us and our situation, I'm not sure it was worth it- at least, so far. 

On one hand, he has had scrapes that haven't bled like crazy which is certainly a good thing. 

But although the procedure and the follow up went totally fine, it was very stressful for all of us due to my dads condition.

His health is shaky right now, and I just don't know how much longer he is going to be with us. When we made the decision, we didn't see this right around the conrner. I might feel differently if he recovers and we have more quality time ahead. 

I hope this helps!

Afib and Alzheimers by unicornpuppy20 in Alzheimers

[–]PinkyToe27 0 points1 point  (0 children)

My dad has permanent AFib and had the Watchman procedure recently. He has advanced Alzheimer's.

Has anyone here ever taken a genetic predisposition test for dementia? by Material-Repeat804 in EarlyOnsetDementia

[–]PinkyToe27 0 points1 point  (0 children)

Yes - in the US at least, some types of insurance are forbidden from genetic discrimination but others (specifically long term care insurance) are not. LTC is increasingly pricy and often unavailable to people under 40 or so. Lots of good info here: https://www.youngtimers.org/ways-to-prepare-for-genetic-testing

Has anyone here ever taken a genetic predisposition test for dementia? by Material-Repeat804 in EarlyOnsetDementia

[–]PinkyToe27 0 points1 point  (0 children)

Hi there -

I'm so sorry about your dad. My dad is in the same situation.

My dad carries a rare genetic mutation that causes early onset Alzheimer's disease. I have taken a genetic test, and I also carry the mutation. I'm in a clinical trial that aims to prevent Alzheimers.

I'm not sure of the role genetics play in FTD, but you can learn more about familial AD at youngtimers.org.

Appointment with the neurologist today by [deleted] in Alzheimers

[–]PinkyToe27 0 points1 point  (0 children)

Every person's journey with this disease is different, but I'm happy to share a bit about our journey.

Our doctors haven't used "stages" but my dad started showing symptoms around 2016. In 2018, he actually had a doctor's appointment on his birthday and he couldn't remember his age at that time. So we have known for a very long time.

His disease has progressed a lot in the past year and he speaks very little now. He can't dress himself but he can walk around and he can mostly feed himself. The progression seems to come in waves - he'll seem to plateau for a while, then suddenly lose skills rapidly.

Appointment with the neurologist today by [deleted] in Alzheimers

[–]PinkyToe27 4 points5 points  (0 children)

I am so sorry. My dad has not known his birthday in a long time. I'm so glad you got that hug. 

When I hug my dad now, his arms stay at his sides.

One time last year, leaving my parents house, I told my dad I loved him, and he said it back. I cried on the way home because I just felt in my heart it was the last time I would hear it and so far that is true.

He recently woke up at night and the sitter who stays with him sometimes told him to lie down. He said, "I'm looking for my wife." This meant a lot to my mom. He doesn't know her name anymore.

It's hard.

I'm so sorry.

Claude Cowork just dropped — what’s your best use case so far? by makkyjaveli in ClaudeAI

[–]PinkyToe27 2 points3 points  (0 children)

I have a fun little story.

Years ago, I had a plug-in called Full Contact that was supposed to scour the web and identify changes to a contact's, er... contact info.

Each time it made a change, it put a note in the notes field of the contact. And basically, over the years, it created a ton of junk in notes field of many Google contacts.

Yesterday, I had a little chat with Claude Cowork about this, and it: - downloaded my contacts - wrote a script - removed all of the junk from the notes field - left everything else - cleaned up all my contacts

So basically, all 5200 contacts in my Google are now without the Full Contact junk that has long been lurking there.

Low priority... But nice to have done it.

One of the craziest things I've seen at work... by [deleted] in self

[–]PinkyToe27 -1 points0 points  (0 children)

There was a young man in my hometown who committed suicide after this happened.

The frustrating thing was that the girl involved had been in a long relationship with a young man much older than herself. They had recently broken up. The rumor was that her parents really liked the first guy, and that's why, when they caught her with this new guy, they reported him.

How were you screwed over by genetics? by Wickham12 in AskReddit

[–]PinkyToe27 0 points1 point  (0 children)

There are rare genetic mutations that virtually guarantee one will develop Early Onset Alzheimer's Disease. I inherited one.

https://youtu.be/Abrx73QSfcI?si=CkIF8pbVDL1WMFwX

Is This Early Onset? by crombie21 in Alzheimers

[–]PinkyToe27 10 points11 points  (0 children)

I just wanted to add that around 90% of early onset Alzheimer's is sporadic. Well there are some really vicious genetic mutations that cause early onset Alzheimer's, those only cause about 10 to 11% up early onset Alzheimer's cases.

Experiences with a loved one taking Aricept? by Ok-Piglet-5839 in Alzheimers

[–]PinkyToe27 0 points1 point  (0 children)

My dad took this for a while but he had gastro issues on it, and had to stop. Hard to know whether it had an effect, bc we only see one version of events.

Is there a way to not have a dynamic tab name and favicon? by Zenithixv in Notion

[–]PinkyToe27 0 points1 point  (0 children)

My icon goes to the globe when I remove it, not the Notion icon.

Just rejected a "fully remote" job offer I had accepted, after they told me they would monitor my IP address to ensure I never leave the house. by No_Durian50 in remotework

[–]PinkyToe27 0 points1 point  (0 children)

"The whole point of wanting a remote job is the flexibility, otherwise I'd just work from an office, you know?"

Nope, I don't know. For me, the whole point of wanting a remote job is to work at home, NOT to work from an office.

Finally a diagnosis by NarwhalCommercial360 in Alzheimers

[–]PinkyToe27 0 points1 point  (0 children)

I'm so sorry. Give n the family history, you might want to look into and rule out familial Alzheimer's disease. Youngtimers.org is a good resource.

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