Cognitive problems with ALS

[CindyM]

Hi Beth. I certainly hope your suspicions are wrong! You might bring this up at your next visit to the ALS clinic, though. Or even email your Doctor there? I think there might be some drugs that can help level you out, so to speak.

 

[Paul Wicks]

Beth,

Although FTD is one possibility, there is a major factor which should be ruled out which is your respiratory function. Are you using BiPaP / NIV? Is the mask making a good fit? Any leaks in the tubes? Are you waking up with headaches in the morning? Getting a good night sleep? If these are striking a chord you should see your respiratory therapist again.

Reason I mention this is I'm writing a paper about an ALS patient who became euphoric and irritable (to the point of being diagnosed bipolar) because of a simple problem with his NIV.

All the best

Paul Wicks

 

[sdsyd]

Thanks Paul and everyone else who has written about this. I am not Dx with anything as of yet, but one of my complaints the first time I saw the neuro was problems with word finding. I do often subtitute the wrong word ( maybe my brain trying to compensate for the 'lost'word. I think everyone in the world has a flub up now and then, but its scarey when you start notcing a pattern. I folluw-up w/ neuro at the end of this month. I am trying so hard to follow all of the advice on here, but I must admit with my hand/thumb atrophy, twitches and weakness. I am concerned.

Sometimes I think it is helpful when talking with people who have communication disorders to ask them what letter it starts with- or to decribe the obejct they are trying to name. Rhyming is also a good way to find the word. For people with severe communication problems a picture board is also very helpful- they can point to pictures of things they want/need often.

We are going on a family vacation this next week and I'm gonna miss you guys on here, but get my mind as far as it well let me- AWAY from my undiagnosed mystery and enjoy my wonderful husband and 3 kids.

 

[CindyM]

Enjoy your trip, Beth!

 

[sdsyd]

actually my name is Cindy M, too- not Beth but we are going to have a great time! LOLOL

 

[BethU]

Hi ... this is Beth again.

Thanks so much for the feedback. Paul, no I'm not on any respiratory gizmos yet ... just had lung function tests two weeks ago, in fact, and all were normal or better than normal for my age/weight. Am still waiting for my first appointment at an ALS clinic, but I will definitely mention the euphoria.

I have experienced some "emotional lability" ... I've had three episodes of hysterical weeping in the past 2 years (2 were before diagnosed, and all were WAY out of proportion to the cause. One was when I was just trying to put a cat in a cage!) Have had no episodes of laughter. The diagnosing neuro kept asking me about that ... was I having bouts of laughing or did I sometimes feel silly? I have not experienced anything along those lines (yet!).

The euphoria feels like being madly in love when you're 18 ... intense joy, happiness, excitement, almost rapture. I'm almost floating! It sneaks up on me and lasts quite a while ... maybe an hour or so, or longer. It's actually quite a lovely state!

This is one mysterious disease, I guess. And the brain is one complicated organ. Thanks again for the feedback. This forum is a life-saver.
Beth

 

[brooksea]

sorry Beth- I just have to ask-

Are you sure you're not eating those special brownies?:mrgreen:

 

[PDaddy]

sorry Beth- I just have to ask-

Are you sure you're not eating those special brownies?:mrgreen:

I've been looking for those brownies! Where can I get sum?

 

[swi71]

Ftd

Hi Beth--
There is medication for the lability. The doctor actually gave my husband lexapro (depression medication) which really did help. My prayers are with you--I hope that you find that you don't have the FTD.
swi71

 

[BethU]

Thx everybody for the feedback. Glad there are meds that can help with lability.

I, too, have trouble finding words. In fact, I have to use a thesaurus when I write anything (used to write for a living, alas) because I so often can't come up with the right word. So I look up something close in meaning to what I want, and go down the list of synonyms till I spot the word I'm trying to think of.

Also, what is happening a lot is, I'll type a word, and it looks like nothing I've ever seen before. I know exactly the word I want, but I don't recognize it in writing. So I try spelling it various ways, and after a few moments of this nonsense, all of a sudden, my brain recognizes the written word again.

Sounds like the only good thing about FTD is, at least I'll be able to remember when I didn't have it!
Beth