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dana

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So, I finally signed up with the ALS clinic in Portland, OR and they were great about sending me lots of information. One of the things that they sent was a book called Amyotrophic Lateral Sclerosis written by 3 different neurologists who specialize in studying ALS.

Anyways, one of the sections in the book addresses cognitive and behavior changes. Now I know that many of us have discussed that cognitive/thingking skills are not effected by ALS...that usually your brain stays in tact. This has not been the case with dad...he's had lots of confusion and would mix words up a lot. We thought that it was probably a Lymes disease thing.

Well, according to this book, studies have found that one-third to one-half of patients with ALS experience some changes in their thinking. And, it seems that patients with speech and swallowing problems can show cognitive problems early in the disease. (this was the case with my dad) It talked about how patients can have language difficulties and can get confused.

It sounds like this is a fairly new study, but it makes so much sense to considering my dad's situation. I wanted to pass this along to everyone, just in case there are others out there who are like my dad and are having some cognitive difficulties.

You are not alone, and it is not as "rare" or "abnormal" as we once thought.
Dana
 

Al

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Further to that subject at the clinic I go to I met a lady who in 6 months went from working to only being able to make noises and appeared to have no recognotion of her surroundings. Her husband said the ALS was hard enough to take without that being thrown into the equation. So I would have to say that while not common dementia can be a possibility with ALS.
 

ruby ben

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Mixed up

Hi Dana - I have only just passed the 3 yr. mark. My symptoms started in my legs and my speech/swallowing has not been affected yet.

I find that I am saying the wrong words on occasion. Such as "look at that blue bucket" when I can see that the bucket is yellow. Also, at times I am having problems to think of the word that I want to say. Is this what you are finding with your Dad. For me I don't know if it is ALS or just old age - I am 67...............ruby from vancouver
 

rcharlton

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I can totally relate.

Yesterday I went to see my Giraffe about getting a new Albuquerque. Boy, was I embarrassed when I found out it was just my rutabaga.
 

ruby ben

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Loss for words

You guys sure give me a chuckle............ruby from vancouver
 

dana

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Hey Ruby,
Dad calls some things by different words. For example, he uses as suction tube to suction the saliva out of his mouth. While he was in the hospital, he wanted me to get it for him, but instead of calling it the suction tube or even saying suction at all, he was saying port. Then, another time, he kept repeating "deck fan" over and over. We still can't figure that one out. He knows exaclty what he is trying to say, but it doesn't verbally come out right. From what I have read, this can happen. It sounds like my dad's case might be a little extreme. Before his hospital stay too, he was having problems with driving. He would run stop signs and occassionaly red lights. He stopped using his turn indicators and really started making my mom nervous. This can be a sign of the cognitive problems according to the book. Luckily he never wrecked his precious blue corvette or the red camero. Someone is a little spoiled!
Dana
 

Al

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Don't take this the wrong way but your dad sounds like half the drivers in Florida. The good thing is that they all come back up north in April or May.
 

dana

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Do you mean his bad driving Al, or the nice cars? ha
Dana
 

Al

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Both. The fops as the Floridians call them are usually bad drivers driving Crown Vics or Caddies or Lincolns. They stay in the left lane for miles going slower than the limit and have their left signal on for miles and have no idea how to use a cruise control. Have you ever been on US 19 around Tampa? You'll know what I mean.
 

concerned daughter

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Hello,

Looks like I'm resurrecting an old post here, but it seems to be the closest to what I am concerned with.

My Mom was recently diagnosed with progressive bulbar atrophy. She also appears to have some degree of cognitive impairment... whether it's MND dementia or Alzheimer's no one seems to be able to tell.

In any case, the result is that, no matter how many times the doctors have discussed her diagnosis with her, she does not retain the information.

I am really struggling with how much I should try to help her understand what is going to happen to her. I'm not sure it's right for her to be left in the dark about the gravity of her condition, but she retains so little from day to day that I fear it may come to the point where I would have to remind her daily that she has a serious and life-limiting illness, which would be awful for her (and, yes, for me, too).

Right now, although she is certainly aware that she is weakening, she does not seem to understand that it is serious and irreversible. Do I emphasize this to her, and consequently depress and frighten an otherwise unconcerned and contented person? Moreover, she does little enough to help herself now; I'm afraid if she fully understands her condition she will give up completely.

On the other hand, though, is it right for me to "spare" her, and allow the disease to progress (as it will regardless) without a realization on her part of what's really happening?

(FYI, we are in the process of finalizing an advance directive and POA, etc., but she believes these are documents she'll never need; she doesn't connect them with the illness.)

Any thoughts?

Thanks in advance!
 

Paul Wicks

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Hi all,

You may know me from build, but I do occasionally browse these forums too! I'm a psychologist based in London, England and I did my PhD on cognitive change in ALS.

The word-finding difficulties some of you have described sound like the most common cognitive problems encountered in ALS. Saying similar but wrong words, such as "sofa" for "chair" or "clock" for "watch" are quite typical. People can also have difficulty with "executive functions" such as breaking up complex tasks into smaller chunks. These types of problems are the ones that can affect a third to a half of patients.

A smaller proportion, maybe 5-10% go onto develop a form of frontotemporal dementia with ALS, characterised by personality changes, repetitive behaviour, trying to stuff too much food into the mouth at once, and more profound language problems including becoming totally mute.

The concept that ALS "leaves the mind intact" is a fairly old one that has been dispelled over the past 20 years. However, to be frank, patient organisations are often hesitant to raise issues of cognitive change as they can be alarming and disturbing. In my view this is counter-productive, as when these changes do eventually arrive they can cause a lot of distress to carers and patients who then go back to their patient literature to find an absence of information.

This is still a very new area for a lot of neurologists, and we are only slowly spreading this information. I would say it has only really been acknowledged at the ALS symposia over the last 2 years or so. In fact there is a special conference on cognitive change in ALS this June in London Ontario.

Unfortunately there is no treatment other than education to the patient and carer, and suggestions such as breaking things down into smaller chunks, sticking to a regular routine, and the use of calendars, pill boxes, etc. to help patients with their routine.

I'm sorry I'm not able to be much more helpful on this topic.

Thanks

Paul Wicks
 
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Al

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Thanks for your input Paul. I would think that if your mom is happy with the way things are it will only upset her and frustrate you to keep reminding her of what is going to happen. I'm not a psychologist but it could be her way of coping. Shut down that portion of the mind that has to deal with something she finds scary or unpleasant. She may come around in time or get worse. Someone once said ignorance is bliss. Maybe your mom is in this category. Does it really hurt anyone? AL.
 

BWk

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mental impairment

Hello Paul, With myself I have noticed some changes mentally, like today I was doing some paper work and I could not remember my phone no. I also have O.C.B. but that I've had all my life, but it seems worse now. Emotionly I feel unstable sometimes and I just have to stay in my room for long periods of time. I have a hard time doing paper work it makes me frantic somewhat and nervous. If people get to close to me in the grocery store or at home in the kitchen I get very paraniod. Sounds weird I know, but that's how I've been affected. Crazy Barry
 

dana

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My dad's cognitive issues started slowly, but have advanced so much now that nothing he says makes any sense. He knows who we all are (in the family) but he cannot express what he wants or needs because the words he writes down just don't make any sense. Sometimes he doesn't even know what he needs or wants. For example, he might be pointing to the tv remote, and so you would think that he wants the remote in his hand. You will give it to him and he will be content for a bit, and then he is pointing at something else that was in that direction. You will give him everything that he has pointed to and it turns out that what he was trying to get across was that he had to pee. This dementia thing is so confusing and difficult to work with as a caregiver. I would give anything for my dad to have his thinking and language skills back. ALS is a horrible disease to have, but I personally think the dementia that has come with it is even worse.
Dana
 

Teej

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I am relieved to hear some of this...I thought, that because Alzeimers is in my husbands family (we are dealing with taking care of his mother right now), he was showing signs of that. The biggest thing I noticed, is his sense of direction. He was always extremely geographically sound. He could find his way into, or out of, anywhere...Now suddenly, he is completely mixed up...it's very strange... Thanks for all of your information...it means a lot!
 
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