Anyone experience Dementia?

[kbee]

My cousin was dx with ALS lat year. He has progressed very fast. Lately, he has been talking of the wall. Not knowing where he is and has a hard time staying alert. I was wondering if ayone else has had any similar experiences.
Thanks

[Al]

Hi kbee. Welcome to the forum. Sorry about your cousin. If you use the search feature and type in cognitive problems with ALS it will show a thread where this was discussed. While a few years ago the thinking was that there were no mind changes recent research has shown some signs dementia in up to 30% of the cases. I believe that was the percentage quoted in the last article I read. Hope we can be of some help to you.
AL.

[dana]

My dad has dementia and it progressively has gotten worse and worse as time has gone on. This part of the disease is very difficult for everyone involved. It is difficult for my dad because he cannot get across what he wants or needs, and it is frustrating for us because there are times we cannot help him. It is very hard to see such a brilliant, funny, and loving man go through this. It has made my dad a different person and has become where the disease has taken almost all of him. I am sorry your cousin has this disease, but even more sorry that he has the dementia too. Hang in there...it can be such a tough road.
Dana

[kbee]

I want to thank you both for your reply. I did search about it and found alot of info. I am sorry to hear about your dad, Dana and you also, Al. My cousin dosesn't do this all the time. It kinda comes and goes. Is that the case with your dad, Dana? I can't get over how fast this has progressed. He can't move anything but his head, which is how he drives his wheelchair. He has the feeding tube and is on a ventilator but is able to talk and eat. We have taken several trips this fall. He loves to go places and it breaks my heart that he can't right now, he is getting over pnemonuia and the flu. I was hoping this wasn't dementia but I am afraid it is. I feel the same way as you, Dana, it is so hard to watch someone you love who is so full of life have there life taken over by the disease, it just doesn't seem fair.
Thank you again for your responses.

[kbee]

I am so sorry that this showed up so many times. I have no idea what happened, my computer kept saying cannot find server, I guess when it finally did it posted this for everytime I tried. I guess I am a newbie to the computer also.

[CindyM]

Don't worry kbee. You are doing fine with the computer. Perhaps it isn't even something you did. We should ask Al if the server sits way up there in the frozen north. WHo knows, maybe it gets cold sometimes and freezes up (pun intended.)

Ahyway, glad you found us and welcome aboard! Cindy

[Al]

Yes the server is up here in the frozen north. We have been having trouble the last few days with it being over busy and jamming up. Guess everyone is staying in and on the computer. Duplicate posts are no problem. I can delete them as you may have noticed or David can. Have a good day.
AL.

[Teej]

My husband has some cognitive issues, and seems a bit confused sometimes, but it has never seemed like full blown dimentia. He always used to be spot on with his navigational skills and now he almost always starts heading in exactly the opposite direction of where something we are heading to is. It's odd, because he is a genius, and I am not just saying that, so it's been very strange. I have chalked it up to oxygen deprivation. He is at about 30% lung capacity and uses a bi-pap ST most of the day, so I figure that has to be affecting his mind somewhat, since after we need oxygen to think... Just a thought...Blessings to everyone...and Dana my heart goes out to you...Teej

[CindyM]

Very interesting theory, Teej. I bet there is some truth to it, as well.

[dana]

It's interesting that you mentioned the navigation problems Teej. When my dad started having the "confusion," we noticed it mainly in his driving. He would run stop signs, pull out in front of people, and really made my mom nervous when she was in the car with him. That's how the dementia started for him. It progressively got worse and worse to where little things did not make sense to him. We tried doing mental exercises with him and he could not do them. For example, we would ask him what do you use a pencil for? We would give him multiple choices to answer the question and he would choose the answer of "to tie your shoes with." Things were just not connecting. I do think some of it was lack of oxygen and the carbon dioxide build up. When dad got on the ventilator, his thinking did seem to clear up a lot, but it gradually got worse again. Now he is in such a state that it is hard for him to express a lot of what he wants or needs. It is very difficult.
Dana

[luca74]

My Mom was diagnosed with ALS in Dec 05 at the age of 50. She began with mostly bulbar symptoms and now has no use of her left hand, speech is gone, has a peg tube, breathing capacity reduced to 38 percent, significant weight loss, and recent weakness in her left leg. The newest issue has been personality changes and mood swings, which her neurologist indicated at the last ALS clinic as dementia. She is mostly herself, just gets very adamant about things she wants at times, controlling and cries when she doesn't get what she wants. She can get very angry and often says hurtful things and later realizes what she has done and apologizes. This is very hard on all of us - sometimes harder than the physical symptoms. It is difficult because her progression is so quick and we want to cherish our time with her, but those times together are getting increasingly difficult.

I'd appreciate any advice from others who have experienced anything similar.

[shannonme]

My Mom was diagnosed with ALS in Dec 05 at the age of 50. She began with mostly bulbar symptoms and now has no use of her left hand, speech is gone, has a peg tube, breathing capacity reduced to 38 percent, significant weight loss, and recent weakness in her left leg. The newest issue has been personality changes and mood swings, which her neurologist indicated at the last ALS clinic as dementia. She is mostly herself, just gets very adamant about things she wants at times, controlling and cries when she doesn't get what she wants. She can get very angry and often says hurtful things and later realizes what she has done and apologizes. This is very hard on all of us - sometimes harder than the physical symptoms. It is difficult because her progression is so quick and we want to cherish our time with her, but those times together are getting increasingly difficult.

I'd appreciate any advice from others who have experienced anything similar.

Luca-

Is your mom on any antidepressants? This can help with the mood swings. My mom is on Paxil and it seems to be helping her with that. She does have some "confusion". I wouldn't call it dementia yet at this point. But she'll forget things that we've just talked about, have the facts wrong, etc...

My mom is 61 and was dx'd with limb onset in Sept.06.

Shannon M.

[CALS44]

My husband was diagnosed about a year ago, and I only recently found out about the link between ALS and dementia. Please read:

http://www.emedicinehealth.com/dementia_in_amyotrophic_lateral_sclerosi s_lou_ge/article_em.htm

I really wish the doctors had told me about this, as it explains much of my husband's behavior. I have seem him increasingly get irrational, have emotional outbursts, even before diagnosis (which they say can precede diagnosis). But now that I know about this, I can understand, and most importantly, explain it to our kids. I am frustrated that for an entire year I was led to believe the "brain is completely unaffected" when for 25%or more of ALS patients they are finding that some form of dementia is present. I am now more patient when I have to repeat something I just said for the 3rd or 4th time when he asks me to explain it again. He has always been very bright, but his processing capability and memory has definitely changed.

[JACKIEMAX]

my husband was dx in jan. 07 of als, and about 8 months into it, he began getting extremely angry over little things, like our new puppy peeing on the floor. he screamed at him one night so loud and became so angry that i was afraid his blood pressure would cause him to have a stroke.

i asked him to come and sit down with me, and i explained to him that he was not angry at the puppy, he was angry at the disease. he was angry because his life has become a nightmare and he is reduced to sitting on the couch working suduko puzzles and watching tv all day. he is angry because he is not the man he was a year ago.

i called his als specialist and she faxed a prescription for zoloft to our local pharmacy. he began taking it that day, against his wishes, but to please me, and it is already helping.

help the patient understand why they are angry and help them take meds for it somehow, someway. a friend of mine in this group says her husband would never willingly take an antidepressant even if the dr. prescribed one, so maybe it can be put in his food someway.

what do some of you think???

jackiemax

[CALS44]

I agree that anti-depressants are important. In the case of my husband, the anger tantrums still occur regularly, even with taking the anti-depressant. His memory is definitely being affected, so trying to reason with him doesn't usually work. In our situation we have found that the best thing to do is just "walk away" and let it pass. In his case, he will forget and move on, although it is tough on the kids, but they are learning to just walk away, if possible. The unfortunate thing, for the kids, is that he can't control these "tantrums" in public. On the other hand, everyone that we know personally is extremely understanding of this disease and the horrible effects it can have on its victims. As for the strangers, we just don't worry about them anymore!

[knhockensmith]

Hi everyone. I appreciated everyone's comments about possible dementia in als patients. I also had heard multiple times that als has no effect on brain function. My mom (who is 56) was diagnosed with als almost 4 years ago. She has held on a long time. Recently, she has started to say some off the wall things. She is convinced that she is infested with worms and that they are invisible. She then gets upset when we won't reach in her mouth and pull them out. It is impossible to reason with her on this, although other thought processes seem normal...she seems fixated on these worms.

Also, she is also in lots of pain. Has anyone else experienced severe pain with als?

Thanks for any replies.

[Al]

Hi and welcome but sorry that you have to be here. New studies indicate that frontal temporal dementia is a problem with some ALS patients and is similar to Alzheimers in it's manifestations. Severe pain is not normally a symptom of ALS. Where is she having the pain?
AL.

[midwestgirl]

Hi! Welcome to our forum. There is another thread called "Throat Problems" that was just posted early this month. It sounds very similiar to what your mother is experiencing. It is actually hairs that grow down the back of the throat. Normally people on soft diets, or feeding tubes, are affected because the cells grow out long because the cells don't get rubbed off with normal eating. There can be other causes, also. This is called Hairy Tongue, or Black Tongue. There are some links that explain this in the thread called "throat Problems." I hope this can help your mom.

[CindyM]

Hi Midwestern girl- this is a distinct possiblilty! I deal with my Mom's dementia and often forget that there can be an element of reality to her delusions. Like when she says there is a small animal on her floor. Often what she's really seeing is a pair of shoes, but the idea doesn't come completely out of mid-air. Thanks for the great suggestion! cindy

[hearts_and_thoughts]

Wow, after reading some of the posts on this thread, I realized that there is a good chance the barrage of anger tantrums is caused by the disease. I had no idea. I read it once about the connection of ALS and dementia and my sister yelled at me and said "don't go there", so I didn't. Well, I should have!!

Now, I am going to look into this alot more...because it really changes my perspective of my brother and who he is. I didn't know him before the disease...no one in our family and friends did...and it's very possible that his disease is the cause of the "personality defects".

This forum is phenominal...

[hearts_and_thoughts]

I came across this transcript in my search for info about ALS and Fronto temporal dimentia.

http://www.alsa.org/files/cms/Healthcare/Cognitive_Impairment_Transcript.pdf

Of all the literature I read...this one seemed to be the most insightful for me. I hope it can help someone else.

Mary Jo