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SherylJ

Member
Joined
Nov 8, 2012
Messages
14
Diagnosis
11/2011
Country
US
State
Washington
City
Yakima
Hi, I am new to this forum. My husband was diagnosed about a year ago with ALS. He is now developing frontal lobe dementia. This has been steadily getting worse for about the last 3 months. At this point when he has had a manic episode, he doesn't seem to remember that whole day. I took him to an appt yesterday, spent the day with our daughter. He got up this morning saying let's go, when I asked where he said to the V.A. clinic! Wouldn't believe me that we went the day before, and didn't remember seeing our daughter! This has been awful. He doesn't feel he has a problem, so won't even consider talking to someone. He will be seeing his neurologist on Monday, am hoping that he will be more receptive to him.
 

ladyrider

Active member
Joined
Jun 7, 2011
Messages
34
Reason
PALS
Diagnosis
05/2011
Country
US
State
Tennessee
City
Winchester
hope ur visit to the doctor is positive . So sorry
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,563
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Sheryl... I saw the list of medications your husband is on, including the psychiatric meds. I'm wondering if you are also dealing with some drug interactions...especially the methadone with the psych meds. This would be my suggested plan of action. Get yourself a notebook, one that has subject dividers. I had one that fit in my purse. In the first section, make a list of your husbands medical care people... primary care doc, neurologist, psychiatrist. Next to each name write down their phone number and email address. Next section, make a list of all the medications he's taking and the dosages. In the next section write down behaviors you have concerns about and the time of day they concern. This is all information you'll want to share with the doctor.

I maintained regular e-mail communication with Glen's neurologist. He wouldn't have to answer me, so there were no issues with privacy (although I DID have power of attorney) but when we went to an appointment, the doctor knew in advance what the issues we were dealing with were. Eventually I did the same with the psychiatrist.

And I agree that if he is refusing medication, etc, he could be considered a danger to himself and that might give you or the doctor grounds for an involuntary confinement. Even if it's just for a few days it could give the doctors a chance to get his meds balanced.
 

SherylJ

Member
Joined
Nov 8, 2012
Messages
14
Diagnosis
11/2011
Country
US
State
Washington
City
Yakima
Hi, Had my husband in the ER this morning...stomach pain, we thought it was due to constipation...turns out his bladder was full, and unable to empty it. He came home with a catheter...he's really unhappy now. Wondering if urinary retention is also one of the eventualities of ALS.
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,563
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
Not an eventuality but a possibility.
 

hangingon1

Distinguished member
Joined
Jan 29, 2012
Messages
199
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
Georgia
City
Chamblee
The ftd that my wife exhibited changed her whole personality. She would not react or laugh at anything. Her face was a blank most of the time. It was like being married to a stranger. ALS is difficult by itself, but you face an additional challenge. I though that my wife would be alive today, but when ftd became more exaggerated, she died within a couple of months. Please love your husband while you can, even if he does not resemble his former self. Love conquers all. God bless and contact me if you want to.
 
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