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momszoo

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Joined
Sep 29, 2010
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10
Diagnosis
04/2009
Country
US
State
PA
City
PGH
Dad seems to have some bouts of forgetfulness and he will often stare off into space. I was doing his exercises and he just started staring at the ceiling and went off into his own world. I literally had to snap my fingers for at least 30 seconds and he snapped out of it. It's starting to become more frequent.

Is this something that others here with ALS have experienced?


MY dad is only 58 has was diagnosed in April of 09. He is fast progressing. He is already in a power wheelchair and hospital bed, no longer can talk and has a peg tube since July of this year. He won't use the bipap and refuses perm vent. His breathing is getting really bad which is not surprising.

He is also going through some severe extremes emotionally. One week he talks about how the end is very near and then he will go to the extreme opposite talking about how he believes in miracles and he may be able to walk and talk again someday.

He is on an antidepressant. Perhaps that needs to be increased?

Any input is very much appreciated.

Amy
 
Sure he just wasn't having a senior moment?
 
I would call his neuro and tell him about this episode and go from there. I would say it could be a reaction to the anti-depressent, or it could be something else. Has he shown other signs of dementia? Remember that the FTD dementia that sometimes comes with ALS is very different from the better known Alzheimer's or vascular dementias. Classic symptoms include lack of inhibition, flattening of emotions and.. sometimes hallucinations. I remember Glen staring up the stairs for the longest time one day.. turns out the giant blue cat people from Avatar were up there. That was one of his more benign fantasies. If he is starting to show some signs of dementia, there are some new meds out there that weren't available for Glen but might be of help for your dad. A Google search of FTD dementia (make sure you put in the dementia or you'll be ordering flowers!) will lead you to more info.
 
Hope this doesn't double post, but the computer appears to have eaten my answer (have a new laptop).

Anyway... I would contact your neuro about the symptoms you are seeing. I would suggest your dad be evaluated for dementia. Remember that the more well known Alzheimer's or vascular dementia have VERY different symptoms.. . At least Google FTD dementia (make sure you include dementia or you'll have lots of places to order flowers!) and take a look at the symptoms and behaviors... Glen's short term memory loss was intermittent..sometimes his memory was GREAT. If we got him to talk about his "staring into space episodes" they could be... interesting. One day he was standing staring up the stairway (it was blocked off so he didn't try to walk up there). Turns out there were "beautiful creatures" up there.. apparently the giant blue cat people from Avatar! Other hallucinations were far less benign.

There are medications out there that might help.. but many neuros, especially if they aren't terribly familiar with ALS, can be unaware of the FTD component. Yet another area where we CALS MUST be educated advocates for our PALS.

Good luck with your dad.
 
thanks we have his appt at the ALS clinic at the neuroscience center on thursday so I will add this to the list of things to address.
 
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