I've had this article tweeted to me a number of times from a number of different places and I haven't had the wherewithal to sit and collect my thoughts. Fortunately, with friends like the oh so brilliant Idelle Davidson, I can let HER collect my thoughts.
This was the headline and it was one that was upsetting. Why? We are clawing our way for recognition - "It's real." "I'm struggling." "HELP me, PLEASE!" and in an instant..... De-Validation.
Enter MNT... Medical News Today.....Simply adding "May Be" before "Improved" and it's all good. Maybe's and Wanna Bees and for that matter, Queen Bees, too? Steer Clear!
I'm sure she needs no introduction, but just in case....Idelle is co-author of Your Brain After Chemo. I kid you not when I say I have what might be one of the first 10 copies that rolled off the press. With MAJOR props to Amazon for keeping such meticulous records, I know I had this book delivered the same month it was released.
Idelle stays on top of everything and before I had the chance to discuss that nonsensical headline with her, I see a blogpost. Good thing because I can tell you there are so many distractions surrounding me at the moment, there is NO WAY a coherent, cohesive, compelling post was flying off of my fingers.
I've referred to myself as Lou Costello several times and Idelle is my Bud.... So... Hey ABBBOTTTT.... Take it away.... Reprinted directed from Your Brain After Chemo Blog ......
If you've been through cancer
treatment and you are struggling with memory, concentration, multitasking
and/or word retrieval issues, you may be hoping for that golden portal, that
doorway back to your pre-cancer self.
If only, if only... (Idelle's words, my emphasis....simply because I want to break into song: "If I Only Had A Brain!")
One area researchers are
investigating to whisk you there is cognitive (re)training with specially
designed software. How great would it be if rehabilitation were just a handful
of hours and some computer mouse clicks away? Could it possibly be so easy as
playing timed word games, puzzles, and a variation on Whac-A-Mole?
That's the hope. In recent
years a few studies have looked into it. Two, using software developed
by Posit Science and Lumos Labs (Lumosity),
have focused on chemo brain in people who have had breast cancer. Other studies
have looked at cognitive issues more broadly. Software by Cogmed has
has been used to study brain injuries, memory issues in children with cancer,
concentration issues related to ADHD, and more. Programs by Dakim have centered
on age-related memory decline. Cognifit software
has supported memory research in students with dyslexia and in patients
with multiple sclerosis, and in age-related decline.
Have I mentioned them all?
Are there more science-based programs out there? Let me know if I've
missed any.
In the meantime, here's a summary
of the Posit Science and Lumos Labs studies.
Between 2009 and 2011, 82 women
participated in a study that compared results of classroom memory exercises
with computer software exercises. The results were published last October in
the journal Breast Cancer
Research and Treatment (lead author: Diane Von Ah, PhD, RN of
Indiana University). Researchers randomly assigned the women to one of three
groups: 1) classroom-type instruction on how to remember lists of words,
sequences and text; or 2) speed of information processing training (how quickly
you think things through) with Posit Science software (InSight program); or 3)
a wait-list control group. All the women had gone through surgery and
chemotherapy and on average had completed treatment 5 1/2 years earlier.
Those in the training groups
participated in ten one-hour training sessions over a period of 6 to 8 weeks.
Both training groups improved in
processing speed and verbal memory based on neuropsychological assessments and
patient questionnaires but according to Dr. Von Ah as quoted in Medscape, the software
group outcome “...may have ‘broader’ benefits.”
Forty-one women (21 active and 20
wait listed as the control group) participated. Each had undergone surgery and
chemotherapy (may also have had radiation and/or hormonal therapies) to treat
breast cancer. On average, they completed treatment 6 years prior. Results
appeared just this week in the journal Clinical Breast Cancer (lead
author: Shelli Kesler, PhD, director of the Neuropsychology and Neuroimaging
Lab, Stanford University).
The researchers designed this particular program to test
for improvement in executive functioning, a term referring to working memory,
decision making, multitasking, planning and attention. The women trained using
the software on their home computers over the course of 12 weeks. Exercises
included navigating through a rotating maze, recalling the location of coins
and other memory/puzzle games.
At the end of that time
(researchers administered standardized cognitive tests prior to beginning the
program and then again after completing it), the women who played the computer
games showed significant improvements compared to the control group in
processing speed, word finding, and verbal memory.
Both studies though lacked
long-term follow up, so we don't know if the benefits held over time.
Also, it’s not clear whether the most important question of all has been
answered: Can successful cognitive training transfer to real world
responsibilities or do you just get better at the games themselves? At least in
the Kesler study, the participants reported they could function better in how
they planned and accomplished goals and kept track of tasks.
Drs. Kesler and Von Ah say that
more research is needed but it does appear from other studies,
that computer-based cognitive training can slow deterioration in cases of
Alzheimer's disease and mild cognitive impairment.
Have you used any of these
programs? If so, which ones? Did they help? I’d really like to
know. I’ll bet others would too.
(Me again.... I was in a study using CogMed software mentioned by Idelle. There was a followup evaluation which had me walking out of the offices of the research team with my brain DRIPPING from my ears. Results not published yet. I'll be sure to share the study and my own results as soon as they are available.)
I know things changed in my brain due to chemo, though I've never been professionally tested. Over the years (it's been just over 5 years since my last chemo treatment)things have improved, but at some point the improvements stopped and I am where I am.
ReplyDeleteI did do some things to help retrain my brain. I joined a line dancing class about a year after chemo. Most classes I did "ok" (I didn't trip over anyone or hurt myself) but there were classes where I would stand in the back corner of the class and try not to cry because it was just not working. At some point I told the instructor what was going on. He's a veterinarian by profession (he teaches dance because he loves to dance). He was quite sympathetic and said it was like teaching the elderly to line dance (he volunteers his time).
I also played word games. There were too good ones I played. Some days were better than others. But the company stopped offering them (they were free) and I can't really find any good substitutes. Words with Friends just doesn't cut it because you have to wait (sometimes days) between plays. Oh, well.
I'm not really sure if any of these studies are true or if it's just that things improve as the chemo treatments work out of your system, but I do feel as if the things I did helped me to retrain my brain.
AnneMarie, thanks for all your kind words about the book. I like knowing that you have one of the first copies!
ReplyDeleteYou're right about the importance of not overstating the research. No one wants false hope. I also get really irritated as well when I read headlines from university press departments that make it sound like they've DISCOVERED chemo brain (as if no one else has).
Here's one headline, for example. I'll leave brackets in place of the university name because I don't want to embarrass them:
"[ ] study finds scientific basis for cognitive complaints of breast cancer patients." Doesn't that make you think that this is an "Aha" moment, that the research has finally confirmed what we all knew to be true?
In fact, this particular study refined earlier research showing that neuropsychological testing can be one of a couple of valid tools used to diagnose chemo brain. Brain imaging is another.
The subhead of the press release then says: "Research suggests "chemo brain" may involve neurophysiological change." Yes, that's true, but just about every study since the late 1990s has suggested that.
I'm not saying this particular study isn't important (excuse the double negative), because it is. It definitely moves the research -- and the help for us -- forward. I'm just saying that clarity is important to those of us who seek a way back to our pre-cancer days.