ALS with cognative problems

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jbird

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Looking for help, my husband just diagnosed on Friday with ALS but also seems to have cognative problems. Usually ALS does not effect the brain. Anyone have any suggestions... :shock:
 

Al

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Sorry about your luck with the problem and diagnosis. While it is uncommon it is not outside the realm of the disease to present signs such as this. I met a lady 2 months ago at the clinic who was a bank manager in Jan. of this year and in June couldn't talk or seem to comprehend what her husband was saying to her. Just another of the weird things that happen with this disease. Sorry I couldn't give you better news. Someone else here may have a more enlightened opinion but I have seen it once and am going by what I observed. Take care. Al.
 

Mike27

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Hi Jbird,
Here's a link to a study done by Dr Strong, one of Canada's leading ALS researchers, who is working on a connection between ALS and frontotemporal dimentia.
http://www.als.ca/_news/4221.aspx

I don't know if it applies to your husband or not, but it's something to investigate.

Cheers and good luck!
 

dana

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My dad has some brain stuff going on. He gets confused and is forgetful. For example, the other day he made himself a doctors appointment and told my mom. He could not remember which doctor it was with, but knew the time. So far, the confusion has been little things, but it is sad to see. He is a very bright man who owns his own business, but he no longer makes any decisions business wise. I do feel lucky that he is not confused by who his family is, and that he still remembers things from the past. My dad has the bulbar form of ALS, and I wonder if there is a connection there with the confusion/forgetfulness. It is hard for him to talk, and sometimes I think he knows more than it seems, he just can't get the words out. Maybe he knew where his doctors appointment was, but just couldn't say it. I don't know. What are your husband's symptoms?
Dana
 

TBear

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Hi:

We never noticed any loss in loss in mental acuity over the entire course of the my wife's sickness (four years)... nothing out of the ordinary anyway. Then again, there was always some questions regarding her mental capabilities when she agreed to marry me in the first place.

It is difficult to tell in ALS patients as they are often without speech.

Good luck Dana et al

T.
 

jbird

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thanks, everyone for your input. I appreciate the support. I will continue the search. This forum has lots of great info... :wink:
 

Granny

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Hi jbird and Dana,
Jbitd, I have bulbar ALS, but do not have dementia. However, I do know of someone who had frontal lobe dementia with ALS. Don't know a lot about it, but don't think it is too common. This is probably the same thing Mike 27 talked about.
Dana, I agree that your Dad is probably just too frustrated sometimes to try to get the words out, so probably knows more that he says. We just spent a glorious week by the Bay of Fundy with our grandchildren, and inspite of a white board, my assisted communications device, hand signals, etc, it was hard to make myself understood all the time. Some days are easy and some harder, but you do tend to let things slide rather than try to make yourself understood. Hang in there, everyone.
 

dana

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Granny,
What communication devices do you use? I haven't researched any yet, but I am sure my dad will need some communication assistance in the future. My immediate family can understand him pretty well, but it is more difficult for others. Although, he did just speak to a newspaper reporter about the hole in one he made last week at the men's golf night. We were all excited about that for him! Nobody in our family has ever made a hole in one, and my dad could not keep quiet the whole night after making the shot. =) I guess when it is something that he wants to talk about, he can force it out. Anyways, just curious about the communication devices.
Dana
 

Granny

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Hi Dana,
Congratulations to your dad on his hole in one. That must have really lifted his spirits!
To answer your question, I have a couple of things that I use for communications.
I have a little hand held device called IMPACT that I type into and it speaks what I have written. It is about 10 inches by 5 inches. I use it some, but find the voice very robot sounding. It is useful for the telephone especially, as I can answer questions with it.
I know there are more brands of these devices on the market, a popular one being the LiteRiter(not sure that is correct spelling). The device I have is on loan from Easter Seals and the other one costs about $6000-$8000, so that is one reason for my choice. For everyday things, I find I rely more on a little "whiteboard" that I got at Wal Mart. It uses an erasable pen (I go through a lot of them). I find that I can write things down quicker than I can use the keyboard and people can read as I write.
I also always have a small notebook and pen in my purse.
I still have good use of my hands, as I understand your dad does, so these things work for me.
Hope this helps a little bit. PALS here have the resourses of a Speech Pathologist, and suggestions are made of things we can use now, and also further down the road.
Don't know how clear I have made myself, if you have any more questions, just ask. I still remember your Dad in my prayers and wish him well.
 

jbird

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Dana, sorry the delay...My husband doesn't really interact with anyone other than me. He will answer your questions but does not go any further. He slurs and that can sometimes make it hard for other people to understand him. I am sure that may have something to do with his lack of talking. His memory is not too good. Other than that he is weak on the right side, cannot lift his arm but can grasp somethings. I help him when he asks I try to let him do what he can. I am trying to keep him from losing any more weight. Thank for your response and sorry I was late on replying...jbird praying for a cure
 

dana

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jbird,
Does your husband have a feeding tube? My dad does not yet, but I am sure that will be a step we will have to take in the future, depending on how this thing progresses. If your husband is losing a lot of weight, that might me something to look into.
Dana
 

jbird

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Dana, no feeding tube yet, that really scares me. He is drinks Ensure 1 to 2 times a day in between meals. Hoping this will help keep the weight on... Unfortunately he was also diagnosed with dementia. I had a feeling but found out for sure yesterday. How long ago was your dad diagnosed?

jbird
 

dana

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Hi jbird,
My dad was told in March 05 that he has early signs of ALS. He was never given an official diagnosis, but all of the doctors that he sees are pointing to that. They want to keep seeing him every six months to see the progression. He goes back to the docs in September. He's also getting treated for Lymes. We like to think that he has a severe case of the Lymes, but we all know deep down that there is a strong chance that this is ALS. Getting a feeding tube is something the doctors mentioned last time because my dad had choked a couple of times. They said they would not want to see him die because he choked on something, and that it would be better to get a feeding tube. They suggested having a swallowing analysis done, but we have not done that. My dad loves to eat, and I think a feeding tube would be really hard on him. He's only choked 4-5 times, but it is enough to scare you to death. If it gets any worse, we will have to start looking at our options. Anyways, sorry to hear about the dementia. I am sure that makes this whole process even more difficult to bear. My dad still gets confused about stuff, but he still is a smart cookie. His confusion is over little things. I don't know if it will get worse, but I really hope not. I hope you are doing well, and try to keep your head up.
Dana
 

jbird

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Thanks Dana...I am a little frustrated with his doctor right now, because all he pretty much said was his diagnosis and gave us some pamphlets and said there is lots of good info on the net. I have asked that he be tested for Lymes, so I am waiting on that to happen and he goes back to the doctor at the end of the month. I am also looking into a different Neurologist, one with a little more compasion. I will be praying for your dad. Are you helping with his care?
Take care
Jbird
 

dana

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Hey jbird,
I'm not technically taking care of my dad. My mom is doing that job. But, I am the one who has been researching, researching, researching. I got my mom to talk to the doctors about the Lymes testing. I had seen a few people on this forum who had tested positive, and I thought it was worth a try. If your hubby is going to get tested, I would only trust a couple of labs with the results. Lymes seems to have irregular test results, but the lab we used is known for accurate results. Let me know if you are interested.

I did treat my dad with some of the antibiotics for the Lymes once. It did not go so well. My mom was "teaching" me how to do it, and I spilled almost one entire dosage. My dad gave me one of those looks, and I just laughed. It probably won't be the first time I screw this up, so we had to have a laugh about it. I'm known to be a little clumsy. Needless to say, my dad hasn't had me give him his meds again. =)

Even though I am not taking care of my dad, I see him several times a week. I bring my son over to my parents place to go swimming and to visit. My dad is still very mobile, and loves taking my son on golf cart rides. The biggest source of his problems are with his speach, which I know is very frustrating for him. I am just very thankful that he still has his independance, and can do as he wants physically. It still is hard to see my dad kind of phased out of his business that he shares with his brother. I know that this is very difficult for my uncle too. He looks up to my dad tremendously, and I think it sucks for him to make nearly all the business decisions now. My dad has always been a "social butterfly" too, and this has also changed. He doesn't like to go out much because most of our town knows him, and when people see my dad, they want to talk to him. And as we all know, if you have difficulty with your speach, talking with acquaintences is the last thing you want to do.

Thanks for praying for my dad. I do the same for many of the people on this forum, and I will do the same for you and your husband. I know that God has a reason for all of this. I trust in Him, and that helps me get through some difficult times. Good luck with finding a different Neuro. Having a good doc makes all the difference in the world. Take care.
Dana
 
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