Frontal lobe dementia and Als

[ghii]

MRI of my husband's head showed atrophy at the temple, a friend gave me info she googled on it. She used frontal lobe dementia. I read it and understand a few things, for instance the change of personality. My husband is his younger days was ostentatious, very talkative, he likes to take center stage and with some hard edges to his personality. The last two years he became the most patient and sweetest of person. As a result, I tend to forget how he used to be. I see only this mild, patient, sweet loving person.

This morning we visited an old friend who knew him in older days. She worked with the elderly for 20 years hence she has a lot of experience with the elderly. She told me I am blessed, that my husband is so contented and peaceful. He is that. When he first noticed the onset of dementia, he went through depression. Now he has come to accept it and actually enters into a place of peace. He died before and came back to life. He had the tunnel and peace experience hence he always told me he is not afraid to die - which helps.

Our friend could not believe he could sit there and talked little. He has been that way the last few months. Her observation made me realize how blessed I am. She told me they could be restless or belligerent, she hopes he stays that way. He has been that way the last two years.

This could also account for the way - he shows no interest whenever we discussed Als and his condition. In a way, it is a sort of bliss, ignorance is bliss kind of thing. It is not that he is not aware. His memory is very good in some areas, it is just that a part of his brain is missing. This is markedly noticeable at doctor's office, he would talk about every and anything but his health. Whatever the doctor told us go right over his head. Nothing would register in his mind.

The doctor believes the atrophy in his temple area could be due to Als.


gertrude

 

[helpinhand]

ghii,
My father-in-law too has FTLD he has always be calm and passive his whole life and became agressive and impatient,before we even knew about the ALS he was put on Zoloft for possible depression that gave us our old dad back, thank goodness. But he also doesn't seem to understand what is goig on about the illness he never acknowledges anything that the doctors say. I posted a thread because I was concerned he might be suffering in silence, he never says anything is wrong or hurts, His common answer is I'm good, I'm fine. You are in my prayers. I too believe it to be a blessing for him, but for us I guess I feel its a mixed blessing I just wish I could tell if we are meeting all his needs.God be with you, your husband, and your family through this tough journey.

 

[Phil's wife]

My husband's slight memory loss, lack of ability to muti-task, inability to handle normal stress of his job, fogginess, and personality changing in the last couple of years had me thinking he was getting something prior to neurologist telling us about ALS. Now that we know it is ALS, a couple of weeks ago I read about this dementia often happening with bulbar ALS and I believe Phil is getting this also. I count it as a blessing, something that perhaps will keep him more relaxed and happy and satisfied with his life.

May God bless you all in this journey.

 

[ghii]

helpinhand, it is hard in that - like a mother with a sick child who does not know what is happening, only that he/she is hurting, it hurts watching my husband suffer.

Phil's wife, you describe my husband's symptoms almost to the letter. His started also around two years ago. I brought him to doctors after doctors, his decline is too fast for it to be nothing, I told them. They treated him for depression, one insisted he has sleep apnea and nothing. It was so frustrating.

A good one finally caught his myeloma. He got treated on that and then his swallowing and speech problem got worse. She sent him to a good neurologist and that was how we came to know he has Als.

I did tell him he has lou gehrig disease, I figured he would know what that is, Als is a different term for us. I told him that several times, he did not say anything and acted as though it did not register in his mind. I decided it is likely best to move with the disease as it happens.

gertrude

 

[shelleynshaggy]

Same boat here. It is a strange, strange ride.

 

[Katie C]

You hit the nail on the head Shelley.. very strange ride. Glen's FTD has progressed to the point that he has psychotic symptoms. Medication helps that, but we have to be careful because it messes with his balance... not a good thing for a PALS. He had another fall the other night.. I swear he specially picks the times when there's nobody else home. We are looking at a "daytime activity center" for him for a few days a week so that my son and I can have a break from the constant vigilance.

 

[Tom's Support]

Katie, I can't remember if you said that Glen has any dizziness, but when you said the meds messes with his balance I was wondering if the FTLD comes with dizziness. A lot of what Tom is suffering that he thinks is lyme could be FTLD symptoms and the dizziness he has could be because of that or maybe because of shallower breathing.

 

[gotverve]

I'm so glad that I've found the forums because when Mom was diagnosed with FTLD ALS in March 2007, I had no idea ALS ever affected the mind and never found anyone that had had that form. Her brothers and a cousin had limb onset(we have the familial kind unfortunately) so was shocked when I learned the mental changes she'd had for a number of years were connected to ALS.
Like most of you say, in some ways I think it was a blessing but also frustrating in that we couldn't communicate with her as it progressed. While she was still fairly lucid(for lack of a better word), we did have a chance to learn her wishes as far as a feeding tube, etc, so it made those decisions easier when it came to that point.

After Dad could no longer pick her up when she fell(both were in their 70's), we moved her to our local care home that happened to have an Alzheimer's unit. She would barely talk anymore at that point and here were times she didn't seem to know who we were but most times there seemed to be a glimmer of recognition. She would sometimes utter a single word but that was all.
Was very frustrating because I didn't know how to find out if she was feeling pain, etc.

Some ALS patients find they have some FTLD as the disease progresses. Definitely makes this disease an unpredictable creature!

 

[hbmelody]

Hi,
I'm new to this site and I find everyone to be so kind and supportive. My 84 year old dad has dad dementia for about 10 years now and recently gone down hill quickly. He started with foot drop about 2 years ago and his neurologist gave him a test which show fasciulations(sp?-muscle twitching) and nothing else and told my mom that he now has ALS. My mom is also 84 years old with severe cardiac issues and high anxiety which this doc knows and altho he cant say for sure it's ALS he told me he felt it was "his responsibility" to tell my mom that it could be ALS even tho there are three parameters for the test and my dad only met one (muscle twitching-which is common for so many neuro muscular disorders). Now, my mom is a basket case, they live far away, I have a son with a chronic illness and the doc told me to I had to get my mom to accept the fact that he's in "crash mode" and dying. I asked him why he was so sure my dad had ALS, but he couldnt put in on his chart as a diagnosis and he said, "I had a pt with your dad's symptoms once and I was sure he had ALS, but he died before I could prove it). After all the research I've done since Thursday, I guess my question is, how do you know for sure when a person has ALS? My dad has foot drop, muscle twitching, and muscle weakness. No problems swallowing, no resp. or pulmonary prob. I'd appreciate anyones thoughts! ty so much!
Mel

 

[sadiemae]

An EMG would confirm the DX.