Monday, January 2, 2012

Alzheimers Disease

Anxiety is a constant companion of mine.  Anxiety about raising Ellie to the best of my ability.  Anxiety about getting Ellie all of the services she needs.  Anxiety about Ellie learning to talk.  Anxiety about being a good wife and a good daughter.  The list goes on and on.  One anxiety that I try to push into the back of my mind is Alzheimer's disease.

Bear is not a big fan of anxiety or Alzheimer's.

It is hypothesized that the genetic markers for Alzheimer's disease are carried on the 21st chromosome.  Children, like my Ellie, with Down syndrome carry 3 copies of the 21st chromosome in every cell.  Therefore, it seems almost inevitable that if my daughter lives into her 50's or 60's she will very likely be diagnosed with Alzheimer's disease.  I then panic a bit because by the time she may have Alzheimer's I will be practically 80 and possibly senile too.  Can you imagine?!  Oh and not to mention Andrew.  He will be an ancient old fart.

Me? Old?  Never!  I am just a little Bear-Bear.

I must admit that I do not know a whole lot about Alzheimer's.  Sure, I learned a little bit in nursing school, but I am a pediatric person so I didn't exactly get a full understanding of the disease.  Mostly what I know comes from news articles, movies, and acquaintances' experiences.  It seems to me that the early stages of Alzheimer's are very scary for the individual.  Imagine driving home from the grocery store.  You drive the same route weekly.  Then imagine getting lost on the way back.  You cannot figure out just how to get home.  Talk about scary!  Imagine the fear of knowing that it will only get worse.  As the disease progresses, it seems that it really takes a toll on the family members, imagine that your mother no longer recognizes you.  That she forgets to eat and forgets how to use a fork.

Will my little girl forget I am her mama?

Going back to my anxiety, Down syndrome and Alzheimer's.  My Aunt Peg has Down syndrome and she just celebrated her 53rd birthday (whoot whoot!).  Aunt Peg is showing signs of Alzheimer's disease.  In the beginning, she started having trouble remembering all of the steps on using the bathroom (i.e. how to pull her pants back up).  She forgot how to make a sandwich.  Peggy is smart and she knew that this was not normal.  She became scared and then depressed. The disease has progressed and she now no longer remembers my father's name half the time.  She does know that he is her brother, but sometimes he is Dan and sometimes he is Buddy, and sometimes he is just "brother".  She can no longer work.  This causes me great anxiety because I see that this may be the same road for Ellie and Ellie has no siblings to look out of her.  (yes, yes, I know that this is all irrational and unnecessary worry, but that is the definition of anxiety).  Anyway, the thing is, Aunt Peg is happy.  She is being treated for depression and while it is hard for those of us to watch this disease progress and steal her memories, she is happy.  That is all any of us can ask for. . . happiness.

Do not borrow trouble from tomorrow.
I am not going to focus on what might happen to Ellie in the very distant future and I am going to rejoice in Aunt Peg's happiness.

Alzheimer's and Down Syndrome. National Down Syndrome Society. Viewed online dec. 2011 at

Alzheimer's Disease and Down Syndrome: Dual Diagnosis.  Alzheimer's Association. Viewed online dec. 2011 at


  1. I worry about this quite a bit too. I try to remember that so much will happen medically between now and when Abbie reaches an age where Alz. is common. I know it can effect people with Down Syndrome earlier, but I still have hope. Hope that when/if she gets it, they will have ways to treat it. Too much to get into here, but there is a researcher here in our city, who has a son with DS, and he is doing some very interesting research partially involving this very issue. Anyway, you are not alone. I worry about this very same thing often. Do just try to focus on what a beautiful girl you have and all the joy she is bringing you.:-)

  2. Oh I worry about Alzhimers all the time also. I am going to have to look it up one day and see if it is genetic. It seems to be quite prevelant on my mom sides of the family having taken at least 3 people that I know of. So I am always worried about my mom now as she is starting to age. Oh the fear that I have that it will steal every last precious memory that she has of how wonderful her life is. Right now I try not too worry too much about Markie since I do know that he has great brothers that will take care of him.

  3. I'm sure seeing it first-hand in your family makes you more aware of it. It is scary. My husband's grandfather had Alzheimer's, and it was really rough. Hopefully, by the time our kids are that age, research and treatment will be much more advanced.

  4. Spot on, teal915. Watching Aunt Peg go through this makes me so much more aware and it triggers that anxiety of "what if this is Ellie?". I know I shouldn't worry about the far off future, but rather embrace today! That is easier said then done :) @Kelly, would one of Mark's brother be willing to watch over Ellie???? :)

  5. I have to keep reminding myself of the last caption. I also keep praying that there are great strides made in Alzheimer's treatment and research as our children age! There HAS to be!

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