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I am noticing the directional thing myself. Although I have no other mental problems, I used to always know which compass direction I was facing. Now, I don't have a clue. I also used to get sea sick. that too has left me. I attributed both to sitting in a wheelchair all the time and never planting my feet on the ground.

Mike
 
cognitive problems

Hi Concerned Daughter!
I can relate well to what you are saying. Ironically, my mother was first diagnosed with mild dementia and foot drop, before ALS was suspected. The one thing that seemed confusing to me with that diagnosis is that mom's short term (and long term) memory seemed fine for the most part. She did seem to have trouble finding the correct words to use, even items well known to her - ex desk, table, notebook etc. Not a lot, just every now and then. Also, I had concerns about her comprehension. It sure seems to fit in now.

Now that ALS has been diagnosed, I don't think she completely understands what this diagnosis means, and more importantly, the consequences of certain actions, or no action. Example - her unwillingness to eat puried foods (although in her defense, she does choose soft foods to eat, and has started drinking thickened juices), she does not want to talk about the possibility of a feeding tube (I am mixed on this myself, but do believe it is in her best interest to consider this sooner, rather than later) or vent. I am left not really knowing what she wants - maybe she doesn't know herself. My brother and myself went with her to an appointment with her neurologist in which he brought up some of these topics but she didn't input any of her feelings. Maybe, she is in denial, or simply can't face this yet. Thankfully, her breathing seems fine, although she does cough a lot, especially later in the day.

So far, when I talk to mom I tell her it is a progressive disease, but I must admit I leave out the word terminal. I don't want her to feel it is hopeless, but on the other hand, I want her to know that she will have (or will I?) to make some decisions at some point. And the decisions that are made, could very well affect her quality of life. That is scary to me!

This forum is so helpful, just to know that other people do understand.
 
MidWest girl said: "I can relate well to what you are saying. Ironically, my mother was first diagnosed with mild dementia and foot drop, before ALS was suspected. The one thing that seemed confusing to me with that diagnosis is that mom's short term (and long term) memory seemed fine for the most part. "

The thing to bear in mind is that in ALS/MND, the dementia is a "frontotemporal" dementia, and not the Alzheimer's form of dementia we normally think of. Word finding difficulties are quite typical of FTD in ALS, whereas memory is often quite well preserved. Social skills, abstract reasoning, and executive functions are all quite likely to be affected too.

For further details see the Wikipedia article:

Frontotemporal dementia - Wikipedia, the free encyclopedia
 
Paul,
Thank you so much for your insight. It definitely seems apparent that my mother does have FTD, as well as ALS, although she doesn't seem to have any of the other symptoms other than not finding correct words, and impaired ability to manage her finances (her checkbook was a mess, althoug she did pay all her bills - I'm sure she had no idea how much money she had) Lately she has started "weeping", for no specific reason. When asked if something is bothering her, or if she needs something, she says no. She has started using a Trans Derm patch for secretions, which I am wondering if that could affect her mood? I've read that anticholinergics, as well as analgesics and other medications can worsen confusions. It is all so confusing. Or is the crying another result of FTD? Or very likely, she is just frustrated at not being able to communicate, eat, and walk like she used to. Maybe all of the above!
 
> Lately she has started "weeping", for no specific reason.

This is actually quite common in ALS, it's called "emotional lability" or "labile affect". I helped write this Wikipedia article on it:

Pseudobulbar affect - Wikipedia, the free encyclopedia

The patch is probably scopolamine; when I took it for an experiment I certainly felt a bit confused, but individual experiences will vary. There is always a balancing act with medication between primary effects and side effects I'm afraid. Management of secretions can be quite important to avoid aspiration, particularly whilst eating.
 
Paul, Mom's doctor just prescribed Cymbalta for her moods, or emotional lability. In the article you referenced on Emotional Labile, the medications suggested were amitriptyline, fluvoxamine or citolopram. Cymbaltia is relatively knew (August 2004 FDA approved) and the doctor feels this may help with mood, as well as some pain she is having. Any thoughts? I hate to "play doctor", but I also feel I need to get the best treatment for my mother. Thanks
 
Hello everyone,

Well to touch on both subjects being discussed here,.. I don't have ALS, but there are days when I have to excuse my mud mouth.. I am forever mixing my cliches and phrases up and around. I know what I want to say, but am forever embarrassed by what actually comes out of my mouth. Thank goodness I have my mum to sort out my words for me! Funnily enough, it is my mother who has ALS. One of her (many) symptoms is emotional lability. She is on a med for it and it appears to be helping.. somewhat. She has bouts of over the top laughter and crying. The laughter is as wonderful as the crying is upsetting. I have taken time to explain to everyone that this is a symptom of ALS and she has no control over this. This has seemed to ease the situation especially for my children.
 
book?

I would be very interested in getting a copy of this book. Can you please post more information about it? My husband started with speech troubles as one of his inital symptoms, and he has definitely exhibited the signs of some cognitive processing issues.
 
Hi CALS44. Welcome to our site. I believe that the book they are referring to is the Manual for Living with ALS. It is free from the ALS Society of Canada if you are Canadian. If you are American I believe the ALSA has it as well. If you haven't registered with them it's a good idea to. I think it can be downloaded from the website as well but ours is over a hundred pages so you need lots of ink and paper. AL.
 
Thanks Al. I think I have that book, I will look. I don't recall any book or doctor talking about mental capacities being affected, other than the extreme laughing and crying, but I have since found out that they do. As a caregiver, understanding this is so important!

http://www.emaxhealth.com/37/4899.html

Thanks again.
 
Just wanted to let u know I understand what u are saying my husband was diagnosed in August 2006 and his memory is not that good either. His started in his speech and now he is having atrophy in his hands and he trips alot more it is progressing faster than what I figured. But back to the subject at hand we go tommorow to the neurophysc doctor to have some test run to see how his brain is function. He can not get an MRI or anything like that b/c he has a bullet in his back so they are going to run some test b/c it hasn't only affected his memory but also he does alot of things before he thinks about it and he should not be driving either but I can't tell him no different. And I was wondering if u can tell me what book that is with the congitive changes b/c I have not been able to find anything.

Thanks
Vickie
 
Paul Wicks said:
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



Paul,

I'm wondering if you know of any language studies for PLS? My Mom was diagnosed with it about 6 years ago and recently has been replacing words that start with the same letter. For example, instead of "loaf", she''l say or write "love", instead of message - menu, instead of good - got, etc. They always begin with the right letter, but are not even close to what she is trying to say.

~Amylynne
 
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Hi Amylynne,

That is a classic symptom of Front Temporal Lobe Dementia. This form of dementia has recently been associated with some ALS patients.

Mike
 
Hi, all ... this is an old thread, but I am concerned about FTD/ALS combination, and would love to have feedback. Have had speech and eyesight (blurred/double vision) problems for 2 years, swallowing problems for 1 year, and speech is very, very bad now. So far, no limb involvement. After 6 neurologists and a variety of diagnosed, I was diagnosed with ALS 5 weeks ago. Have not yet gotten into a multi-disciplinary treatment program, but I think I'm getting close.

In December I was in the hospital for respiratory failure, and in ICU experienced intense periods of euphoria. (Don't think it was drug related, but who knows?) :)

Toward the end of my stay (2+ weeks), my respiratory therapist started to really annoy me, and I "decided" ... "the heck with being Ms. Nice Guy ... I'm going to nail him." I started really needling him and got him much on the defensive before I left. The day I left the hospital, I got into a huge shouting match with contractors who were working on my house (despite my lack of intelligible speech, I communicated pretty well, with some not-very-nice language that they managed to figure out) This display of rage astonished the people (my in-laws!) who had brought me home. Then the next day, I got annoyed with the home-care nurse and started being really b****y to her, to the point where she refused to come back.

This was NOT normal behavior for me! The whole rage/annoyance thing lasted about a week or so, but then I returned to normal, feeling really badly about the way I treated these people. (Not the contractors, however ... they deserved it!) I figured it was probably just exhaustion and stress from the hospital, and have pretty much forgotten about it.

Since then, I've been OK around people ... but I still keep getting those bouts of euphoria, as intense as they were in ICU. And it's definitely not drug related now. Frankly, it feels great ... waves of excitement and joy wash over me. A rose bush develops a bud, and I'm thrilled to pieces! THRILLED! I rush to get a camera and take its picture and drag my husband outside to look! (Of course, he thinks I'm nuts.) During these episodes, I feel like I'm in love with the world.

I was going to post a query on this forum as to whether others feel this kind of euphoria, but first I Googled "ALS and euphoria," and discovered to my horror that this could be part of something called frontotemporal dementia, which is associated with a certain percentage of ALS patients. Personality changes, mood swings, euphoria, sometimes apathy (which I have not experienced), social aggression or lack of tact, impulsiveness, and all kinds of other unpleasant things may be part of it.

Eek! Reading this old thread, it seems often FTD starts first, but I have had bulbar palsy symptoms for 2 1/4 years now and the euphoria episodes for only six months. Does anybody else have personality or mood changes, or know if they can be controlled?

And here I was really enjoying these episodes of sudden happiness ...

Beth
 
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Beth,

sorry for your diagnosed!

Just to let you know my husband is now experiencing episodes of anger. I do not think it is FTD. PALS deserve to be angry just as anyone else does. Out of frustration you may perhaps lose it as my husband has with ignorant SOBs lately. Course I could be wrong as I am no doc!;);)

I've not heard of the euphoria thing except in schizoid episodes. Do you laugh during these bouts?
 
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