Research from University of Alberta:
http://www.eurekalert.org/pub_releases/2011-09/uoaf-mrd091411.php
http://www.eurekalert.org/pub_releases/2011-09/uoaf-mrd091411.php
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Katie C
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Excellent article... I think the more research shows this to be the case, the more support will be available especially to caregivers at an earlier time in their journey.
sadiemae
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Good find CJ. It shows that the Frontal lobe is probably damaged at least a little bit
"There is increasing evidence from pathological studies of ALS patients post-mortem that not just the motor system is involved. Our research supports this and demonstrates in those living with ALS, that the disease is indeed attacking other parts of the brain. The cognitive and behavioural changes we are seeing in patients are not reactive," he says. "They are not happening because someone is depressed or doesn't have initiative because he is weak. Those changes are happening because there are biological and chemical changes in parts of the brain that are responsible for behaviour and cognition."
His paper published in early 2011 looked at decreasing levels of NAA in the cingulate cortex – the first time MRI had been used to measure chemicals in this region of the brain in ALS. And his most recently published paper, which came out late this summer, was the first to demonstrate that NAA was decreasing and mIns was increasing in the frontal lobe, even when there weren't signs of cognitive or behavioural issues in patients. The frontal lobe is considered the hub for cognition and behaviour in the brain.
"There is increasing evidence from pathological studies of ALS patients post-mortem that not just the motor system is involved. Our research supports this and demonstrates in those living with ALS, that the disease is indeed attacking other parts of the brain. The cognitive and behavioural changes we are seeing in patients are not reactive," he says. "They are not happening because someone is depressed or doesn't have initiative because he is weak. Those changes are happening because there are biological and chemical changes in parts of the brain that are responsible for behaviour and cognition."
His paper published in early 2011 looked at decreasing levels of NAA in the cingulate cortex – the first time MRI had been used to measure chemicals in this region of the brain in ALS. And his most recently published paper, which came out late this summer, was the first to demonstrate that NAA was decreasing and mIns was increasing in the frontal lobe, even when there weren't signs of cognitive or behavioural issues in patients. The frontal lobe is considered the hub for cognition and behaviour in the brain.
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Thanks for the article. I am going to share with the family so we can all develop more,um, tolerance?
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Very interesting. Ironically, the doctors that were interviewed in that second article are the ones that we are seeing. I certainly hope that they come up with something soon, as I hate the thought of anyone else having to travel this same road to Hell. Let us be the last!
And, thank you so much for posting these. All information is helpful in our struggle.
And, thank you so much for posting these. All information is helpful in our struggle.
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Scary prospects! Thanks so much for posting these! I've forwarded them on to my girls so they'll be aware of what to look for.
I did agree to participate in a study for this when I first went to clinic. It was a one time questionnaire.
I think our ALS Clinic does some cognitive testing every three months when I go in. Will have to be sure an ask in Jan when I go back if they're picking up any changes.
This awful disease robs us of everything.
I did agree to participate in a study for this when I first went to clinic. It was a one time questionnaire.
I think our ALS Clinic does some cognitive testing every three months when I go in. Will have to be sure an ask in Jan when I go back if they're picking up any changes.
This awful disease robs us of everything.
Katie C
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I'm noticing a trend in the newer articles to emphasize that the behavior changes are NOT depression, or reaction to the diagnosis of ALS, but actually symptomatic. A lot of education needs to happen. Glen was actually seen by a dementia specialist early on, before the ALS diagnosis. Because there were no memory issues, this psychologist totally missed the diagnosis. Very frustrating for families who KNOW there is something wrong, and can't get anyone to listen.
I'm also noticing the percentage is believed to be higher as to how many pALS are affected by FTD. After reading both those articles, I'm sure now my husband has been affected mildly and hope it does not escalate.
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I have to look on the bright side of our FTD/ALS double whammy.......he doesn't seem too bothered by his diagnosis, as long as you don't actually use the word 'dementia.' It is very hard on those of us around him, but if and when he does get sad, he doesn't really know why and it's pretty easy to pull him out of it. I do get that this situation is getting harder and harder everyday, but if I can take the brunt of it, and let him off 'easier,' then I prefer that, every day of the week.
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Another article:
http://alsn.mda.org/article/when-als-affects-mind
This really caught my eye
Also, sometimes people can become less agreeable or more introverted than they were. They might also have a little more difficulty detecting or understanding the emotions that their family members might be experiencing, and sometimes they don’t see the changes that their own personality has gone through.
Brain changes can cause a person to become very frustrated or irritable about a certain issue and get really stuck on it.
Q: Is it important to distinguish between cognitive and emotional problems resulting from changes in the frontal lobes because of ALS itself and those resulting from anxiety or depression associated with having the disease?
A: I would say it’s important to try to do that, because depression or anxiety can be addressed with specific medications. (Editor’s Note: Sorting out the subtle differences between cognitive dysfunction that has its roots in depression or anxiety and that which may be caused by frontal lobe changes is for a professional, not for family members, to do.)
Q: What medications are commonly prescribed?
A: I’m not a physician, so I can’t speak directly to that. But usually doctors try to address any mood problems that can be treated with antidepressants or anti-anxiety drugs. Then, if those don’t seem to help, they may try medications that are geared toward stabilizing cognitive impairment.
There are no medications that are approved to treat cognitive changes specifically in ALS. However, doctors may use those that are approved for the management of Alzheimer’s disease, such as Aricept (donepezil), Exelon (rivastigmine) or Reminyl (galantamine). These drugs affect the acetylcholine (a chemical messenger) system in the brain.
Don’t try to convince the person that he or she has changed by pointing out all the ways that he’s changed. That’s usually not very effective, it wastes energy, and it can lead to a lot of frustration. It’s not that the person with ALS doesn’t want to see. It’s usually that they aren’t able to see these changes that they’ve gone through.
http://alsn.mda.org/article/when-als-affects-mind
This really caught my eye
Also, sometimes people can become less agreeable or more introverted than they were. They might also have a little more difficulty detecting or understanding the emotions that their family members might be experiencing, and sometimes they don’t see the changes that their own personality has gone through.
Brain changes can cause a person to become very frustrated or irritable about a certain issue and get really stuck on it.
Q: Is it important to distinguish between cognitive and emotional problems resulting from changes in the frontal lobes because of ALS itself and those resulting from anxiety or depression associated with having the disease?
A: I would say it’s important to try to do that, because depression or anxiety can be addressed with specific medications. (Editor’s Note: Sorting out the subtle differences between cognitive dysfunction that has its roots in depression or anxiety and that which may be caused by frontal lobe changes is for a professional, not for family members, to do.)
Q: What medications are commonly prescribed?
A: I’m not a physician, so I can’t speak directly to that. But usually doctors try to address any mood problems that can be treated with antidepressants or anti-anxiety drugs. Then, if those don’t seem to help, they may try medications that are geared toward stabilizing cognitive impairment.
There are no medications that are approved to treat cognitive changes specifically in ALS. However, doctors may use those that are approved for the management of Alzheimer’s disease, such as Aricept (donepezil), Exelon (rivastigmine) or Reminyl (galantamine). These drugs affect the acetylcholine (a chemical messenger) system in the brain.
Don’t try to convince the person that he or she has changed by pointing out all the ways that he’s changed. That’s usually not very effective, it wastes energy, and it can lead to a lot of frustration. It’s not that the person with ALS doesn’t want to see. It’s usually that they aren’t able to see these changes that they’ve gone through.
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Thanks for that link.
If you think your pALS has even the least bit of a cognitive problem, it will not help to mention it to them at all. In fact, they may become agitated and blame everything on you. Don't go there.
It is sometimes hard to tell if there is a problem, as it can start out very slight.
If you think your pALS has even the least bit of a cognitive problem, it will not help to mention it to them at all. In fact, they may become agitated and blame everything on you. Don't go there.
It is sometimes hard to tell if there is a problem, as it can start out very slight.
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