Monday, March 09, 2009

The Other Dreaded "A"

Recently, I heard from a close friend of mine from college that her mother is in the early stages of Alzheimer's disease. I'm not sure how old her mother is, but I think she's right around 65 -- retirement age. My friend, who has a baby daughter, has been visiting her mother and stepfather, who live a state away, as often as possible. Her mother is doing OK still, but is definitely changing. She still recognizes her family, and my friend really enjoyed seeing her mother enjoying playing with her daughter on a recent visit. However, her mother has a hard time in restaurants; she can't figure out what to order. She repeats the same things, just minutes after she said it the first time. That part reminded me a bit of echolalia, which affects so many of our kids with autism.

I found this article in The New York Times, and was struck by the "In Brief" bullet points at the top:

The number of Alzheimer's patients is expected to increase dramatically in coming years, straining the health care system.

Scientists have not discovered the cause nor devised effective treatments. Even diagnosis is difficult.

In the absence of therapies, attention has turned to teaching the skills necessary to cope with demented patients.

Increasingly caregivers are encouraged to validate the feelings and perceptions of the person with Alzheimer's.

The first two points, especially, struck me in their similarity to Autism.
The number of Alzheimer's patients is expected to increase dramatically in coming years, straining the health care system.
I hope Autism will not continue to increase dramatically in coming years, but it already has increased dramatically in the past fifteen years. Imagining the "unexplained" dramatic increase in Alzheimer's is heartbreaking, considering it already affects "1 in 10 over 65 and nearly half of those over 85." The straining of the health care system is already a threat with Autism, as well, especially as our children become adults and the parents can't take care of them anymore.

Scientists have not discovered the cause nor devised effective treatments. Even diagnosis is difficult.
With Autism, too, there is no known cause or "effective treatments" according to main-stream science, though many of us parents have our theories as to what caused Autism in our children, and have been trying many treatments, many of which have helped recover our children. Considering how hard mainstream medicine talking heads work to convince us that vaccines do not have a link to Autism ("We don't know what causes Autism, but we know it's not vaccines!" they repeat over and over, though they haven't actually proven this to anyone; in fact the exact opposite seems to be the case in certain children), it seems they will do the same for Alzheimer's -- "We don't know what causes Alzheimer's, but we KNOW it's not that flu vaccine we push so hard in senior populations." Sigh. They'll keep developing and trying new drugs, but if (and that's a big if -- I have no idea if toxins and heavy metals build-up in the brain are responsible for Alzheimer's; I haven't been reading about it for the past six years, as I have with Autism!) flu shots have anything to do with Alzheimer's, are doctors going to be willing to admit that in order to recover patients and prevent new cases? Like Autism, it's a wait and see approach, when those currently suffering can't afford to wait and see.

In the absence of therapies, attention has turned to teaching the skills necessary to cope with demented patients. In the Autism community, there are behavioral therapies for the children, to help them cope and learn life skills. The adults and parents, though, may need therapies themselves, to learn to cope with life if their child isn't high functioning enough to live on his or her own as an adult. Coping with parents with Alzheimer's, when they have reached the stage when they are incontinent and unable to communicate, doesn't seem that far from the Autism world that many live in. This quote from the article struck me, as well: "how to deal with the anger, the wandering, the sleeping all day and staying up all night, the person who asks the same question 15 times in 15 minutes, wants to wear the same blouse every day and no longer recognizes her own children or knows what a toilet is for." Apart from the recognizing her own children part, the rest were eerily familiar. I and my friends with children with autism have dealt with at least some of these! Anger, wandering, and asking the same question over and over were big issues here, though fortunately these problems have faded over the years. Well, the repetitive questions still happen, but two out of three ain't bad!

This quote also hit home: "People with Alzheimer’s and their families are so desperate that they will buy any drug that offers even a shred of hope, and many will keep using the drug even if the symptoms don’t get better, because they can easily be convinced that the patient would be even worse off without it." When my child was diagnosed with Autism, I and my husband probably would have done anything and tried anything to help him. Over the years, we have lost our fervor to try any new thing, and we have avoided pharmaceuticals for the most part, sticking to various supplements, though we have spent money on things we can't afford, as when we rented a hyperbaric chamber for a month of treatment. Hutton's verbal skills and his drawing and writing increased in the month following, but we can't afford to continue to see if there are further improvements. Often it is difficult to tell if anything we do actually helps, or if it's just Hutton growing up and developing new skills on his own or from school. Unfortunately, our child is not a controlled experiment. Then again, fortunately, our child is not a controlled experiment. Being able to tell, right off the bat, if a new treatment is working or not would be great, versus waiting months or years, and watching for subtle signs, but we do the best we can with what we have!

In the ideal world, no one would have to deal with Autism or Alzheimer's. In this one, the big "A"s hit hard and often, attacking at either end of the life cycle. The young are faced with Autism; the old with Alzheimer's. However, those of us in between may have to cope with both.


Kajoli said...

I sooo hear you on this topic .. very thought provoking
So many of R's issues have reminded me often of stroke ( particualrly the apraxia )
To me its shocking that more research is not being done on all the toxins considering all these disorders are on the rise

Stacy said...

How did the HBC work out? I do not remember hearing about that. Unfortunately researchers know about as much about Alzheimer's as they do Autism and any clear answers are taboo and costly, if you know what I mean.
My last post title is a link and I am now Tzeitel- Yiddish evolution of Sara, sounds like: sight-el. The woman with the schmata on her head is Tzeitel from the movie, The Fiddler on the Roof.
There you have it:)

Michelle O'Neil said...

The paralells are striking, that's for sure.

me said...

We are dealing with both autism and alzheimers. DH's mom is only 65 and in the late stages of alzheimers. My grandma suffered from it too. When DH's mom looks at the ground when she walks and then stoops to pick up small objects, like a pop-top from a soda can, I see AJ in her. I see his mom in her own world, and then she comes out of it sometimes in joyous recognition of me and of her son and her grandchildren. That often strikes me as AJ does the same in her own world then snaps out of it for me and her family. Thanks for the interesting post. I will share it with my family.

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