really bad memory

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gooseberry

Extremely helpful member
Joined
Jul 2, 2014
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Lost a loved one
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5/2014
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I know we have discussed cognitive changes several times on the forum but something happened this weekend that really concerned me.

Steve talked to his brother twice and the third time said hey its good to see you. I didnt know. You were here.

He has been having a lot more confusion and forgetfulness but not like this.

Any thoughts?
 
How is his breathing - has there been any significant change?

I admit that is frightening.
 
It's rare but possible for ALS to affect memory. I take it that you're probably concerned about behavior changes due to FTD. While that's certainly something that is possible, I don't think you should get too concerned just yet. But it's good to be prepared, anyway.

You can ask a neurologist to test his memory and look for signs of dementia if you think this is a recurring problem.

To prepare for full blown FTD, you might want to make all decisions yourself and ensure you have a general POA over all matters of finances and medical decisions. This is what we did, although my PALS never showed any sign whatsoever of cognitive decline.
 
I do have poa in place and use it. His breathing is closely monitored and there has been no significant change. There doesn't seem to be much in the way of physical progression but yes I am worried about ftd. Steve's word recall, names,faces, facts, etc that should be long term memory seem to be going but he seems to have no short term memory anymore. He will talk to someone on the phone, hang up, and not be able to say who it was.
 
I'm so sorry--it's really scary when something like that happens. I can definitely relate. Saturday my PALS asked me what our address is...and we've lived here more than 25 years.
 
I guess I expected the physical changes and have been mostly prepared for those. In no way have I been ready for the mental changes. Steve has always been so intelligent with a sharp wit and funny sense of humor. He has been a journalist and writer, a language arts and math teacher, he has edited magazines. In no way did I expect his word recall and memory to fail. I guess this is how I have buried my head in the sand. He is becoming argumentative because he believes he is always right, only to forget what were discussing. If it weren't so funny at times it would be heartbreaking.
 
Steve has always been so intelligent with a sharp wit and funny sense of humor. . . He is becoming argumentative because he believes he is always right, only to forget what were discussing. If it weren't so funny at times it would be heartbreaking.

Wow, sounds so similar. My guy is a CPA, was a Chief Finance Officer for 29 years, several terms on our local school board, and Mr. Negotiator/Peacemaker. Now he has absolutely no tact, no filter--says whatever comes to mind. Before our cruise he argued vehemently against a scooter, but 4 days before leaving told my sister-in-law I had ordered one for him then was angry that I hadn't. I managed to find one on short notice. We've always been partners. I feel sad that I'm losing him even while he's still walking, talking (some) and eating. ALS SUCKS!

Thanks for letting me vent on your thread. It's a rough day. :cry:
 
I hear you and know how you feel. I was in a very defeated mood for the first part of the day. I work during the week so don't notice as much. This weekend was rough. Steve is having mood swings, is very forgetful and went off and got very upset over someone pretending to be with the social security administration. He did not stop to think before giving them a bunch of info and once he realized it got very upset and it got him very frazzled and he is normally very calm and quiet. He forgets what I say a lot more and called me the wrong name this weekend which he has never done. Steve is also very smart, technical and a problem solver. He is totally in denial about the disease most of the time. I feel the same way that I am losing my best friend and partner while I am taking all the responsibility.
The second part of the day went better. I found out that we will get help with our bathroom and bedroom remodel and may have a lot of the materials donated along with the design. Thank goodness for the kind hearts and souls in the world. Hugs to you all. I know I can use one.
 
Gooseberry, Ironically I was a journalist too. My grammar has gone. My spelling terrible. And lately, I've when reading back an email I've written, I've actually used wrong words in places, and they weren't autocorrected.

I've noticed this for quite some time. I honestly thought it was my imagination. So I started reading more and more books and news articles. That lead me to realize my recall is poor. I posted a few weeks back about how I failed certain areas of cognitive testing. I was shocked but I think my shock had more to do with the fact that I hadn't been imagining any of this.

Someone recently sent me an article about cognitive impairment in ALS/MND. I don't recall -- arghh -- whether they touched upon full-blown memory loss. I'll have to see if I can find the link and reread it. My mother has dementia. I remember the early stages and it so tough on both the carer and the sufferer.

I wish I had answers or words of wisdom. All I can do is send my virtual support.
 
This is such an unreported murky area of ALS. I have heard this so often in some form or another, and experience it also, though not to the extend that you are, Steph. I don't consider it FTD, but it makes sense if you think about it--a neuro muscular disease--how can it NOT affect the brain.

In our case, husband does not agree that he has issues or has personality changes.
 
Supporting and protecting everyone's finances, legal rights and optimal life/death is in part accomplished by the will, advance directive and PoAs that every P/CALS should have in place.

However, I continue to believe many of the cognitive/language changes in ALS are different from CO2 or FTD or even the much-written-about moderate changes in executive function.

I think they are energy conservation mechanisms. PALS expend more energy per hour for their limited or failing mobility than people with any other disease of which we know. At some point, I think, for many people, the brain just sort of goes into partial hibernation, to work at all. But, also, the part that is not hibernating is different.

I had a preview of this. Larry had a couple of strokes pre-ALS, one during his 2nd heart surgery. He had to relearn most of his speech, names, dates, etc. He never had therapy, just went back to writing and figured it out. He never got quite back to baseline, in part, I think, because he went through a series of health crises and his brain overloaded. So he occasionally confused pronouns/people/things/events and had special difficulty with understanding fast or overlapping speech.

As his ALS progressed, as you'd imagine, his mood, patience and energy waned. He was never on antidepressants or anti-anxiety drugs. But...

Two weeks before he died, I took a picture of a rainbow that he would never have been able to see (he couldn't get close enough to any of our windows, or turn his head). So I took the camera into the bedroom and showed it to him. One of our student assistants was there with me and saw the rainbow as I took the shot. Neither she nor I, seeing the rainbow through picture windows, saw what Larry did on the tiny camera LCD, in bed, with one eye (he lost the other one to one of his diseases). He immediately said, "That's a double rainbow." We went to look again and still didn't see it. But a few minutes later, we saw that he was right as the second rainbow appeared to us.

I don't want to be Pollyanna about this, and I can't be. But somewhere in every PALS, and ultimately every CALS, is a rare soul, now anchored to the earth with gossamer silk instead of grim consciousness. The reality of ALS is too terrible to treat normally, rationally, one-day-at-a-time. I'm one of the most just-the-facts people I know, but that I know as well. There has to be something to compensate. What that "something" is will be different for every person. So if you or your loved one seems fundamentally different from the pre-ALS days, I think that is completely true in one respect and completely false in another.

Best,
Laurie
 
FTD is real, and they are only just in the past few years beginning to understand it better in our PALS.

Not every PALS will suffer FTD, but around 50% will. This does not mean that 50% of PALS will show dementia. But there can be some changes in how the brain functions.

This is an excerpt:
"Executive functions are difficult to assess directly since they coordinate other cognitive skills. Damage to memory, language, visuospatial skills and other cognitive functions can impact how a person performs on tests of executive function. Executive skills are also grounded in real world experience, which makes laboratory tests more difficult to create."

Another excerpt:
"Semantic dementia
Semantic dementia, which has also been called "temporal variant FTD," accounts for 20% of FTD cases. Language difficulty, the predominant complaint of people with SD, is due to the disease damaging the left temporal lobe, an area critical for assigning meaning to words. The language deficit is not in producing speech but is a loss of the meaning, or semantics, of words. At first, you might notice someone substituting a word like "thingy" for more unusual words, but eventually a person with SD will lose the meaning of more common words as well. For example, early in the illness a patient might lose the word for a falcon, later-on forget the word for a chicken, then call all winged creatures "bird" and eventually call all animals "things." Not only do they lose the ability to recall the word, but the concept of these words is also lost. "What is a bird?" might be a typical response for a patient with advanced SD.

Reading and spelling usually decline as well, but the person may still be able to do arithmetic and use numbers, shapes or colors well. Names of people, even good friends, can become quite difficult for people with SD. Like the behavioral variant, memory, an understanding of where they are, and sense of day and time tend to function as before. Muscle control for daily life and activities tends to remain good until late in the disease. Some of these skills may seem worse than they actually are because of the language difficulty people with SD have when they try to express themselves.

When SD starts in the right temporal lobe, people in the early stages have more trouble remembering the faces of friends and familiar people. Additionally, these people show profound deficits in understanding the emotions of others. The loss of empathy is an early, and often initial, symptom of patients with this right-sided form of SD. Eventually people with right-sided onset progress to the left side and then develop the classical language features of SD. Similarly, left-sided cases progress to involve the right temporal lobe and then the person experiences difficulty recognizing faces, foods, animals and emotion. SD patients eventually develop classical bvFTD behaviors including disinhibition, apathy, loss of empathy and diminished insight."

The behavioural variant causes the personality changes.

I HATE ALS :(
 
I will be speaking and for a split half of a second see in my head the word I want to use - but then it is gone and I cant find it. I cant get it out and stutter trying to find the word again, I end up using a different word that makes no since and that I do not understand why I used it. Sometimes I just use a strange word with no stuttering and do not notice that I did so until my wife mentions it later.

I did a lot of teaching, and public speaking as part of my past and now, like my body, that part of me is also disappearing. I know there is no help for us but none the less at times I just want to scream for it -HELP
 
Having said all that Pete, stress also can affect this part of the brain function.

I called it 'carers brain' and now I call it 'widows brain'. The thing is it mostly happens to me when I'm a bit stressed.

I do some adult teaching and they find it amusing to have to fill in obvious words for me at times ...

All past carers I talk to report language difficulties, so I am convinced that stress is a part of the situation.

I think when it becomes a real pattern of behaviour and progressively worsens it's a sign of the brain being affected.

It is the best way to understand it tho I think - you can see the muscles wasting, but you can't see the same with the brain, but you can feel the effects.

It doesn't make you less of a person, but it is really frustrating and can be a true part of all the disease is doing. Add to this the stress of dealing with MND and it just has to happen even more.

Like today I had to take my stereo system amplifier in for repairs and it took me a couple of hours to remember that it was called an amplifier ...
 
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