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I'm sorry your family is going through this. It sounds, from your description, that this is not really an ALS problem per se. It's an anger issue of a man whose been mad for a very long time for whatever reasons; but now he has something to be mad about. As his family, you do NOT have a duty to be destroyed by his disease.

He needs to be made to understand that you know he's going through something very difficult, but you, your Mom nor anyone else will stand silently by and be abused.
Therefore, he can help himself by controlling his behavior in which case your Mom, your brother, you and whomever else will be more than happy to ease his suffering as much as you can. OR, if he chooses not to control his abusive outbursts, he can suffer alone and without assistance.
It won't take long to see which way he wants to pursue.
Good luck. Either way - follow through - it's his decision, not yours.
 
to stevekc: If the anger and abusive behavior are being caused by frontal lobe involvement from the ALS, the man CANNOT help his behavior because he no longer has that brain function. Expecting him to do so can actually be cruel. Expecting his family to act as if he is doing it on purpose can be cruel to PALS and CALS alike. Sometimes the simple, black & white, this way or that way answers of the "normal world" simply no longer apply.
 
I am so sorry that this is happening in your family. Just remember that with bulbar, the victim is not in their right mind. My wife had bulbar and she treated me horribly and said things to me that were totally uncharacteristic of her. It hurt me nonetheless.
 
@hangingon1:

ALS Bulbar onset, by itself alone doesn't cause these drastic changes on behavior.
I have Bulbar onset and, the only "behavioral" problem I have is controlling some episodes of uncontrollable laughing and/or crying which could be easy controlled by using the prescription drug called Nuedexta.

When those drastic behavioral changes happen (like the ones you mention about your late wife) they are due to FTD which affects the frontal lobe of the brain and the the person is no longer in control of his/her actions.

I have met several PALS during the monthly meetings sponsored by out local Chapter of ALSA and none of those with Bulbar onset only, have had any radical changes on behavior like that you have mentioned on your post.


Regards,


NH
 
The support you offer your Mom is invaluable. Just her knowing that she is not going crazy and that someone else sees that his behaviour is not normal is huge. Keep up your loving input and getting her out of the house whenever you can. Your Mom is lucky to have you in her life. God bless.
 
OK, so here's the thing.... No, not all bulbar onset PALS have cognitive issues. BUT... PALS with bulbar onset do have a higher incidence of cognitive difficulties than other forms. This is not emotional lability (unexplained, inappropriate bouts of laughing or crying that the PALS is aware of but cannot control) This is degeneration of the frontal lobe of the brain, causing behavioral changes that are very hard for the CALS to deal with... the PALS is no longer capable of empathy, no longer is inhibited by "social norms", etc. In extreme cases there are even audio and visual hallucinations. It is not at all unusual for a PALS with FTD to deny they are ill at all which makes compliance with medical advice difficult.

Asya's description of the way her Dad is treating her mother sounded all too familiar. I am hoping that they will find a way to bring up these issues with her Dad's doctor. I highly recommend keeping a written journal of behaviors and bringing it to the next appointment. There are combinations of psychiatric meds that won't fix the problem, but can certainly make dealing with the issues a little easier.
 
I know not all Bulbarians (PALS with Bulbar onset) end up with FTD but as you point out the likelihood for developing FTD would be higher for PALS with Bulbar onset than other PALS.

However, in one of the monthly meetings sponsored by our local Chapter of ALSA, there was a 58 years old PALS with just limb onset (his left arm and hand only affected so far) and he had developed FTD in a short time afterwards.
So, I guess there is not a definite rule of who does or who doesn't develop FTD with ALS.


Nh
 
Nope.. no definite rule. The sad thing is that many neuros still cling to the old "cognitive involvement is rare" so CALS don't learn the signs, leading to unnecessary suffering for the entire family.
 
Having experienced the anger and abuse from my husband for months now and after two attempts at his biting me(he being unable to use his arms or legs)out of frustration,I have been giving this a lot of thought. I believe as I said before that ALS brings out the worst traits that the sufferer had before becoming ill, but I would also like to add that the medications that some patients are on seem to have a direct affect on the personality, not only gabapentin but the morphine as well.

We are all in this together.
 
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