My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Wednesday, June 30, 2010

Alzheimer's, Down syndrome and Sarah

by Joyce: Thank you to everyone who took the time to leave comments on our last post. Focusing on the thyroid was a very good suggestion and one of the first areas that the doctor does look at. If you have been following for a while, you might recall that Sarah has recently had two very thorough blood analyses done. They were specifically looking at the thyroid and leukemia because of some white cell abnormalities. Both came back in the normal range.

Now as simple as this might seem, there are two things we are watching: her wisdom teeth and an excessive amount of wax build up in her right ear(I can't bring myself to blog about the procedure to eliminate it-sorta gross-if you want more info google "how to eliminate wax build up in ears":). Both could make hearing an issue, which could be a reason that she is not responding to questions. Simple. Almost embarrassingly simple. Yet, I think that is what us mom's with kiddos with multiple medical issues plus the Down syndrome goes through. It is often a process of elimination. In Sarah's case, we know she hides her pain from us. She knows all too well what the consequences can be. It really was TJ's arrival back home that brought the pain in her ear to our attention.

I do want to share a video and the link to the National Down Syndrome Society webpage for Alzheimer's. Both are excellent resources. I know most of our readers have young children. Truthfully I'm not sure I would have been bothered with this topic when Sarah was their age, but as we say in our house, "it is what it is."

Click HERE to go to the National Down Syndrome Society webpage for Alzheimer's information.


Anna said...

I was just wondering if Sarah can read/has access to these particular entries? In other words, does she know that you are worried about her? Just wondering.

Rochelle said...

Thanks again Joyce for the great info. You are absolutely right, we don't worry about this stuff at the moment but we like to know about new info that is continuing to come out about topics that impact people with ds so a great read even for us families with little ones yet.

my family said...

Thanks Joyce for sharing this info

Lacey said...

I just talked to a lady the other day that had an adult DS niece that is 50. She is totally dependant now, her brain is not functioning well. I've heard that alzheimers is common young in DS people. Scary! thanks for the info!

heidi marie said...

i haven't done a whole lot of research on the link between ds and alzheimer's since my son is young. and as you say we don't worry about it. but my one issue with studies related to the two is that i'd be interested to see studies in 60 to 80 years from now versus the studies they do today comparing the two.

common sense tells you that if you take older adults with ds in today's age you are going to get a lot of adults that typically did not get a whole of early intervention or adults that were not constantly challenged and pushed to be educated.

it wasn't that long ago that children with ds were institutionalized. well you stick any child in an institution where the child doesn't have resources to develop/learn properly their mind is deteriorate sooner rather than later. and it doesn't have to be adults that were institutionalized. i look at people my grandparents age and the mind set about the diagnosis of ds is so different from mine and people i know my age that have children with ds. parents loved their children but viewed ds in a more "negative" light. and maybe not so much parents, but teachers, doctors, etc. there wasn't much hope decades ago.

i'm not saying there isn't a link between ds and alzheimer's, but maybe there is more to it than currently believed.

Mary said...

You might be interested in the ongoing research on the connection between DS and Alzheimer's and specifically on the efforts underway to develop a treatment I'm hoping that Sarah's issues are simply due to the wisdom teeth/ ear wax problems--pain and lack of hearing can definitely cause confusion.

I have a 6 year old daughter with DS and am so concerned with the link between DS and Alzheimers that I raise funds for DSRTF via the New York City Romp for Research I am also a quilter and have loved reading about Sarah's adventures in quilting. My daughter also loves to put together fabrics and she helps me to sew.

JennyH said...

Alzheimer's is scary. I do think about it even though Max just turned 9. It can happen so much earlier with Ds. It is not fair.

Thanks for all the info. I hope Sarah returns to normal self.

Angi said...

Hi Joyce~ I pop over to Sarah's blog quite often, though I don't catch every post. My brother has Downs and a few years ago he was having similar symptoms to your Sarah, our family has done a bit of research on Downs and Alzheimers...not a fun time, however he is much older than Sarah..he is 44. His Alzheimers was present for a lot more yrs than his diagnosis..they thought it was hearing. It is good that you are aware. She is an amazing beautiful girl!