Regression with age?

[Jodi]

Hi ya!

Okay, I know this is short notice, BUT...

I have an uncle who is 45 with DS. My dad is his brother. Anyhow, he has always been pretty low functioning, living in a group home for almost 15 years now. He does hold down some jobs (janitorial in nature) and has had behavioral issues in the past (is it hereditary? haha).

My dad brought him home for the weekend, and noticed that he didn't "get" what my dad would say. My dad would tell him to use the bathroom, and he would take a shower. My dad would tell him to shave, and he would change his pants.

When my dad took him home, the house supervisor told him that he has been really regressing lately, and that it is common with DS. I am my uncles conservator, and I have an annual meeting today to go over health issues and goals for next year. I've never heard about regression coming on so rapidly and that it is associated with DS. I'm certainly going to see what the nurse has to report (if anything). Let me tell you, this isn't much different than an IEP. Unfortunately my dad's family has never been too involved in my uncle's life, and I became a consevator because I have Ryan ( expert by association). I feel bad for my uncle because he deserves better - and let's just say my dad's side of the family stinks!!

Soooo... do any of you have any idea of what I'm talking about here?

Thanks!

Jodi

[hidyperson]

Probably the form of Alzihmer's that so often hits older people with DS. Or a stroke has occured. The problem with this combined with 'low funtioning' is there isn't much left - let us know what the nurse has to say. Sounds like your uncle is on to another stage of his life, just do what you can to make it is a good as it can be for him. -Jeff

[momofrussell]

I was thinking Alzheimer's too like Jeff mentioned. Although 45 sounds young to us, I would think in the world of DS and having Alzheimer's linked the way it is... it can happen sooner?? KWIM? Let me see what I can find on it....

Good luck!! And I bet you are an AWESOME advocate for your uncle!

A.

[momofrussell]

Here.... www.emedicine.com/neuro/topic552.htm

I "googled" Alzheimer's and Down Syndrome and there was quite a few articles that came up. Jodi, maybe you could google and see what all you can find and maybe print some out for your meeting even. I did notice in this one article.. like I thought... Alzheimer's is something that can happen in the DS population and the onset can be in mid 40's to 50's.

A.

[Jackie]

I was friends with a woman who had DS and was in her 40's. She functioned at a pretty high level...but was not independent totally. Around the time she turned 50 she developed Alzheimer's...and had a rather rapid decline and eventurally passed away. She is the only older person with DS that I have actually known this to happen with.

I think there is a much greater chance that many of our kids might develop this someday than say the general population ...but it doesn't mean it will happen that way for all....Perhaps by the time most of us reach that point in life...there will be good news and answers. But that's what it sounds like to me.

But the fact that Alzheimers is also a 21st chromosone abnormality probably does predispose people with DS to it.


Jackie mom to Emily 26

[TriciaF]

Jodi,
I know the meeting would be over by now, but I guess as with an IEP, you can always add/change things. My first thought is whether or not there is a really good DS clinic nearby that your uncle goes to or could attend? I think it would be helpful for someone with good knowledge of Ds and neuro stuff to give him a physical or refer him to a specialist. I know there are some things that can mimic alzheimers also....remember that commercial of the guy on TV that is normal now and is spiced into the video looking at himself the way he was....head down barely shuffling? He had been diagnosed I believe with alzheimers incorrectly and actually had Normal Pressure Hydrocephalus, anyway fluid on the brain. Good luck and thank you for being there for your uncle....he's lucky to have you on his side!

Here's a link to the commercial:

www.lifenph.com/

Oh, another thing that is much more common than people know...vitamin B12 defeciency.....called pernicous anemia. If you have it, and you can have a family disposition (my grandmother, mother, her brother, his daughter and grandson all have it) you can't just take vitamin b12. You lack something called intrinsic factor that I think is produced in your stomach that has to bind to it to be absorbed. So, after your liver runs through its approx. 5 year store of b12, you begin to get extremely more anemic and very disoriented and can be diagnosed or suspected of alzheimers. It used to be fatal until the scientists figured out what was going on. The fix is simple.....you have to get a shot of B 12, which I assume contains the intrinsic factor, usually every month. But you will have to do it throughout your life.

Here's a good research site:

www.medline.gov

[TriciaF]

Wow,
You got me interested and I found this article with a chart referencing the genetic implications of differnt chromosones. It was in a dental publication and I can't find it anywhere else but it was interesting.

www.agd.org/library/2005/july/Little.pdf

I found this info on misdiagnosis and it mentions thyroid disease:

www.wrongdiagnosis.com/a/alzheimers_disease/misdiag.htm

[CC]

This may help some, not sure if anyone passed this site on yet

www.ds-health.com/adults.htm

CC ~

[meghans_mom]

First - have his hearing checked...you never know...could be wax or hearing loss. but this is probably not an unusual age for an adult with DS to show signs of dementia or whatever you want to call it.
however, there can be underlying causes for these things - infection, UTI, etc...so don't let them just "write" your uncle off.
AND if it is DS-related Alzheimers, they do use the same medications that they use for regular alz. disease to help slow the progression. We had a handful of adults w/ DS in every nursing home I've ever worked in...probably a bit older than your uncle (50's) and most if not all were on medications for alzheimers.
best of luck - and let us know how things go. laurie

[MB]

Just wanted to say that you all are a terrific group of people. How great for this gentlemen to have a niece who cares and the support of the Uno Mas family.

mb

[Jodi]

Thanks to you all for your quick replies. You know what's funny about today? I met with Orange County Regional Center for my uncle, then San Gabriel RC for Ryan about three hours later - both annuals today

Anyway, after talking with the team, it does appear to be a hearing problem. My dad probably didn't talk loud enough, said too much, and had too little patience!! My uncle has hearing aids but HATES to wear them.

On a good note, after my experience with Ryan, I think I've got the team for my uncle to assess him for a communication device. They kinda all looked at me with a "why didn't I think of that" expression - and honestly it was because of Ryan's recent experience that I realized how much it would help my uncle.

You know, it is quite an interesting situation here. I know we all talk about fear for the future, but in a way my uncle is giving me that exposure now. Now for the sad part... I feel terrible for his current situation, but I don't have the means to provide more for him. I wish I had more time to research for him, and just to spend more time with him, but my other kiddos and my job - well, it's already such a full plate.

Thanks for all the links. I will get to them soon and see what's what. Just an FYI - the service coordinator for OCRC has a brother (20 yo), and told me that the "latest" news regarding alzheimers in DS is to start young with antioxidants - through vitamins. He said they are trying this out now on adults to slow the progress of AD. I'll have to look into that, but thought I would share what he said. Don't really know much about it... but I'm sure I will soon .

Thanks again everyone - you all are great!!!!

Jodi

[momofrussell]

WOW... Jodi... that you are all on track with that it was the hearing and getting him an aug comm device. Made me smile how to read the team work and rectifying of the situation! Please keep us posted!

And if you find more about the antioxidants and such... post it here!

A.