Looking for help

[hishelper]

My partner was diagnosed in Nov with bulbar onset ALS. He is doing okay right now, however I have some serious concerns that don't seem to be addressed. He has suffered noticeable confusion and memory loss for about 6 months now. It is only getting worse.

When I mention it to his nurse or doc, its quickly disregarded.. I don't understand. He is now forgetting anything that happened in the last week. His overall confusion is worse to. He never gets up from a chair without saying, Now what was I supposed to do... Its frightening to me. If he is forced to make any decision at all... he will break down and have a full anxiety attack. Most things I decide for him.

Its June 2012 that we first noticed speech problem. At that time he developed these anxiety attacks (I call them) although they could've been called fits of rage... I don't understand why the people at the ALS clinic are so quick not to address this. I realize his diagnosis is serious so maybe that's why they don't seem to care. But day to day helping him keep track of everything, reminding him of everything, deciding everything is very overwhelming and scary.....

 

[Barbie]

Hi helper,

I am sorry you have to join us. I think the docs may be disregarding you because I don't think that FTD is really about confusion and memory loss--more cognitive and personality and executive decisions. His diagnosis is fairly new, so he could be feeling extreme stress and fear and even some depression, and all those can cause confusion and memory problems. but if you are really worried, you should try to keep a journal of what and when he has problems (be specific) so you can send it to the doctor at the ALS clinic before your next appt.

in the mean time, does he have anti depressants he is on? also, Nuedexta can help with emotional swings.

 

[hishelper]

He's on Prozac. I am with him 24/7 and I think sometimes I reaching for some other "something" that might be wrong. Isn't that ironic how you wait impatiently for a diagnosis, then you get and want to trade it for something else... Like he will go into a store that he's been in a million times and get lost. His driving scares me, he can't focus on more than one thing at a time so it makes it difficult. He is quite emotional and some of his behavior is driving me absolutely crazy. I'm going to mention it again at the clinic...

 

[affected]

Usually the FTD associated with bulbar onset takes the form of either behavioural issues or speech issues such as forgetting words.

Memory issues are not usually the problem. It makes it hard for me to say my husband has FTD as a lot of people think of typical dementias and he doesn't present that way at all.

It took me so many months to work out was my husband depressed, in denial, finding it hard to cope with his functionality losses or was there FTD involved. Anti depressants have helped settle most of his raging tantrums into weeping but talking more about how he feels.

This is a great place to get support and help.

 

[hishelper]

I really appreciate the information. I guess its easy to cross confusion with memory. As far as his situation goes... well I just don't know. I call it memory. In fact we refer to it as "recall" because memories are there but its a constant struggle to recall names, events, phone numbers, what he last ate, what happened yesterday etc. There are a few positives, like he can't remember any movies so we get to watch my favorites over and over. His speech is getting worse also. It sucks so bad cause people look at him like he's mentally not there. I really have no patience for that at all. Or they talk louder to him like he can't understand what they're saying.

A couple other things bothering me, is that he has actually gained weight. It does take him longer to eat, and yes he does choke some but all he wants to do is eat and have sex. It drives me absolutely crazy. Inappropriate joking, comments and grabbing in front of the kids. My kids are struggling with this.

I appreciate the feedback I was really worried that he may have the ftd as well. That may not be it, but something is wrong. I know dealing with the diagnosis is a huge adjustment. The doc said the emotional lability was normal... I just can't help but think something else is wrong.... Thanks guys for reading.

 

[affected]

Don't worry about the weight gain, that is GOOD.

My husband is only 340 pounds, this is far worse for a PALS than gaining weight.

The next behaviours you describe ARE typical of FTD, and they are so difficult to deal with. My PALS has actually settled much of those behaviours because he can barely move or talk!

The emotional lability is a bit different - inappropriate laughing or crying, mixing laughing and crying and often doing both together. Hysterical laughing is common. This is bad with my husband because he too often aspirates if he goes into that laughter and it takes a lot for him to control himself.

I personally deal better with all this behavioural side of things now that I know it is FTD, as it felt for so long like maybe I just hadn't 'really' known this man, or that I really was the problem. Now I know it is another symptom, another part of him wasting away, and I just try to accept it as part of it all.

That reaction of people to the speech problems is horrible isn't it? I take pains to explain to people that he can hear acutely and he understands everything they say, he just can't use his mouth to speak back properly.

The memory issues you describe must be distressing, and it certainly sounds like there is a lot of brain involvement for you husband.

My husband has more problems with truly understanding cause and effect. This causes him to make bad decisions and to get angry with me when I want to put things in place. I give him the logic then just accept his anger and that he isn't going to comprehend me.

Keep talking, it always helps me to hear what others with FTD go through, as it always reassures me that I'm not mad, I'm not harsh, I'm dealing with a true effect of this atrocious monster called ALS/FTD.

 

[zoohouse]

Tillie, is your husband really 340 lbs, or 149 lbs.?

 

[affected]

ummmmmmm try 121 pounds!

what a typo!

Tillie :mrgreen:

 

[Barbie]

Tillie, I was laughing when I saw you wrote 340 lbs! Now that is a BIG guy in anyone's book!

 

[Katie C]

First... thanks for the giggle Tillie. Aren't typos grand! Just blame it on autocorrect, we'll all go along!

Now... Tillie is right... what you are describing as "recall" IS an FTD issue. It sounds to me like your medical professionals are working with out of date information. Standard belief used to be that only 10 percent of PALS had cognitive involvement. Now the belief is that number is much much higher, and that as many as 50 percent show actual FTD symptoms. I know the link is going to slow posting, but this way you don't have to go looking: Behavioral variant FTD | Frontotemporal Dementia (FTD)

I would print out the information from the UCSF website, bring it to your doctor, with the sections highlighted that describe what you are living with. Also, start keeping a journal of incidents, with date, time of day, and a description. Share this information with the doctor also. It took us several combinations of different anti-depressants and anti-psychotics to get to the point where things were manageable.

 

[affected]

Thanks Katie, I blame auto correct! (couldn't have been me hahaha)

Thanks for posting that link too, I had read that site a while back then hadn't found it again.