Is there anyone out there with a loved one with dementia and ALS? Anyone with pure respiratory onset ALS?

Hi Leslie. Welcome to the fourm. I am glad you found us but sorry about what is happening to your Dad. We've had some discusion about dementia and ALS onsome of the other threads. A member by the name of Paul Wicks, a psychologists in NEgland was doing a sutdy on the issue and he says A smaller proportion, maybe 5-10% go onto develop a form of frontotemporal dementia.

So its kind of rare, but maybe some of our PALS and CALS will have some thoughts. regards, Cindy

Hi Lesley,
My mother was first dx with foot drop and dementia - in Dec 2005. Since then she started having speech and swallowing problems, and ALS was dx Dec 2006. She doesn't seem to have any long, or short, term memory loss BUT she did (you can no longer understand her speech) have trouble finding a correct word (she would point to a table and not know what to call it, or call it a sofa). Frontal Temporal Dementia has two areas - executive function (which is word finding, planning, organizing) or lack of inhibitions. Mom's checkbook was a diasaster - its amazing she managed to pay her bills. Between the trouble with finding a correct word (not always) and her "accounting" system, I think she may have the executive part of Frontal Temporal Dementia, but not the "typical" dementia which is memory loss.

She also has emotional liability - she will start crying for no known reason. I will ask if anything is wrong, and she will say no. This is so disturbing to me - I hate to see my mom cry, and I am not sure what to do. She is on a low dose of paxol, not sure if I should see if we can try something else, or if we should try a higher dose.

Does anyone have any ideas? Actually, she doesn't have a lot of crying episodes, but one a day is too many for me. I don't want to overmedicate, it seems like such a delicate balance. It's hard to switch antidepressants, because it takes them a while to work.

Hi Lesley and Midwest Girl:
I was diagnosed a year and a half ago with the language presentation of frontotemporal dementia. I take aricept and namenda which are fantastic drugs, and help with the confusion. The MRI and CAT scan show abnormal atrophy of the frontal lobes. I have no memory problems. (I'm 62).

For the past year I have been experiencing fasciculations and spasms mainly in my legs. I wake up starting about 4am with severe spasms and cramping. After a bad night, my legs are in such pain, I sometimes take Tylenol3 with codein for some relief. I have been using a walker now for the past ten months, as I have balance problems. It feels like the muscles on the sides of my legs aren't working to keep me upright. I finally had the electomyography (EMG) and nerve conduction velocity (NCV) tests yesterday. Nothing!!! Even though the neurologist could actually see the fasciculations on my legs, arms and even my tongue, he says no, it's not ALS.....he thinks there's a problem in my brain.

I'm just so frustrated...... I was so sure I would finally have an answer as to what is going on with me, and maybe some help with the pain. Oh well...back to my researching!

Mary

HI Mary,
Was your neurologist familiar with ALS? Mom is also on Aricept, I am not familiar with the other drug. Before mom was dx she would say it felt like she had a "charley horse" in her legs, or they would "fall asleep". It would even wake her up at night. At first, I thought she might be low in potassium. Mom never liked going to the doctor, so it was a challenge to get her to go. Actually, she was very involved in a senior center, and once a month they would have someone come and take everyone's blood pressure. Mom's was very high, so that's when she started with the diagnoses. Also, at first the doctor thought mom might be having TIA's. Has your doctor mentioned this to you?

Not having a diagnosis can be both a blessing, and a curse. Take care!

It is my husband who is ill, his presentation was with a dementia but he also has muscle twtiching and it appears respiratory muscle weakness. Everyday is something new. His quality of life remains good but for me and my children it is horrific. This highly intelligent man is reduced to a simpleton. His mother and her brother died of ALS, we now believe his mother was also demented but not as bad as he is. He had an EMG which was "positive" a year ago but he has had very little progression of the ALS symptoms. I desperately want to find someone like me, young (I am 51 he has been sick for 4 years) and strugglling with this long drawn out painful death.
I would say your leg symptoms are pretty significant. I take my husband to a center specializing in dementia and with some knowledge of ALS but no one can really give me any answers.

Hi Midwest girl:
Yes, apparently this neurologist specializes in the muscular diseases, different from my neuro who specializes in FTD. I do go back to my FTD neuro on Aug 22nd, so I will be discussing this with her further also.
I had a rougher night than usual with the leg spasms, and this time also spasms in my tongue. My tongue got long and skinny in my mouth....and this morning I have not only sore legs, but a sore tongue!
This is so strange and scary!
Mary

Hi I had that happen that is a cramp in your tongue or a spasm ..How is you speech Pat

Hi Mary. Has your doctor mentioned either Baclofen or Quinine for the leg spasms? Most people here use one or both to help with that.
AL.

I have tried the quinine, but had a very bad reaction to it. I will definitely mention the Baclofen to the doctor. I am also taking cal/mag which I heard also helped with the spasms and cramping.

My speech has been fine so far.....mind you this morning, when my tongue was hurting so much after the night, it felt oversized in my mouth, and I was glad I didn't have to try to talk much.

Thanks for you help.

Mary

My husband has bulbar onset and also has dementia. He is only 55. At this point he has a limited diet and his speech is all but gone. He hsa not been persribed anything for the dementia but he does take baclofen for the muscle cramping. The baclofen does a good job of preventing the cramps. On days when he expects to be more active, he takes an extra baclofen tablet.
The speech problems started about two years ago. The first I noticed issues with the swallowing was Dec 2006. At that time I had noticed other physical issues but he did have the muscle cramps for about a year. He lifted weights and excersised for an hour each day and he felt the cramping was simply due to a lack of pottasium. Figs and bananas were added to his diet to control the cramping.
Looking back, I believe the dementia started over two years ago but it really progressed last summer and till Fall his boss noticed significant change in his abiblity to write and develop computer programs. I noticed that he could no longer explain the programs to me and since we worked at the same company and he was writing programs for the grou pI manage, it was obvious to me that he no longer understood the systems that he had developed and trained others on in the past.
He was angry at first and did not believe that he had dementia when he was diagnosed in January 2007. By February, we were sure that he had als and the dx of als was confirmed at an als clinic on March 1.
Since that time, the dementia has continued to progress at a faster pace and he is now having some problems with walking and he has lost his muslclar physique.
The demenia is the most difficult part of the disease at this point. He is often confused and has difficulty with simple math problems. He cannot follow conversations and no longer reads like he used to.
I know there is no way to know how fast the disease will progress but it is hard to believe the dementia could get much worse. However, I am sure it will.
Sorry for the lentgh of my post but I am very confused and would appreciate any suggestions.
Candi

Hi Cindy:
I am so sad the doctors haven't got your husband on the aricept and namenda yet. They have made such a tremendous difference to me with the confusion. I'm still able to have an almost normal life, completely different than before these meds.

I'm getting really excited about this baclofen. We've all but quit riding our tandem bike, because the spasms and cramps increase to unreal proportions.

For any of you interested in the various symptoms of dementia, I have written in my online journal ever since I was first diagnosed, and your welcome to visit my website. www.simplesite.com/mothermary

Mary

Mary,
What you describe on your web-page is not the type of dementia my husband is experiencing. In general, memory is not an issue for him even though he is not able to perform the programming he was capable of previously. THe programs he had written and the systems he developed were complicated and he is now having difficulty understanding complicated concepts.
Thank you for your site and I do hope baclofen helps with your cramps.
Candi

Hi Cindi:
Actually, with my frontotemporal dementia, I have absolutely no problems with my memory...just the confusion. I had to take early retirement at 60 because of the confusion I was experiencing in my secretarial job.

From what I read in my FTD support group, the only people who don't benefit from the aricept and namenda are those who have the behavioural presentation of FTD. In fact these drugs seem to make the behaviour problems worse. Even people with Vascular Dementia are finding the meds are keeping the confusion down.


Mary

Hi Candi!

I am so sorry this is happening to your husband, it must be extremely difficult. Dementia is a very emotional issue - for the caregiver as well as the person with dementia. Your husband is so young, and the fact that it is affecting his job has to be stressful. Then ALS, too .... very stressful.

It sounds like your husband may have what is called Frontal Temporal Dementia. It does not affect memory, but does affect word finding ability, and organizational skills. My mother also seems to have this, although hers does not seem to be progressing much. But that may be due to the fact that she really is not in a situation that it would be real noticeable. Here is a link that you may find helpful:
http://en.wikipedia.org/wiki/Frontotemporal_dementia

My prayers are with you and your husband!

For those of you with loved ones diagnosed with both frontotemporal dementia and ALS, I was wondering if they presented with the brisk reflexes which seems to be one of the keys in the early diagnosis?

I have very delayed reflexes, and I'm thinking this is because of the FTD. It seems to take longer for my brain to react to anything. I have to wear protection because my brain doesn't get the message in time that I have to go to the bathroom. It takes longer to identify what a sound is. So is it also possible that's why the delayed reflexes?

Just curious.

Hi Leslie, I am not as young as you. I am 60 but my husband has had ALs for 4 years. He cannot move and doesn't go out further than the yard in his wheelchair. He has been really good about this but he won't talk about anything meaningful. It has been horrid for me and our children to watch. My children mostly stay away. I used to feel young and I am starting to feel old and drained. I understand what you are saying. I have been fairly upbeat and I usually bounce back. I write to a lady who lost her husband to ALS after two years and she tells me that I will get some life back . Right now it seems like endless misery. Hang in . I hope I'm not offending anybody by being blunt. It seems that there is no way to win. Lou

Hi Lou-you have a lot on your plate right now. It is OK to be discouraged!:( I hope you get some relief from all your caregiving duties once and awhile. Cindy

Hi Leslie,

I mentioned on my first reply that I was new at this. I was interrupted and I am not sure it went through. My lovely wife has been recently diagnosed with FTD and ALS. I am looking forward to reafing all the impooirtant information I am finding here. My wife was on Namenda and Aricept. We stopped Aricept because it was not helping. When we stopped it, the terrible leg cramps mentioned by others stopped.

The only suggestion I have was the need for frequent physical therapy inorder to keep muscles toned up. We are doing therapy 3 times per week. In additionI do exercise with her almost every day.

Hope this is of assistance.

Marvin

I just saw this thread. How do I get to it easily?

My wife has been diagnosed with ALS and FTD. She is declining rapidly.(about 6 to 18 months)

-Practically no speech.
-very difficult swallowing
-uses walker. Muscles are weaking. It hard for to get out bed without assistance.
-she does remember things but is now a bit spacey.
-Acts irrationally at times (going out of the house alobe wihout her walker)
-Doctors say a feeding tube decision will have to be made in 3 to 12 months or less.


Are the any words of wisdom that can ease the situation.

Thanks,

Marvin

Hi Marvin. You've come to the right place. I am so sorry about your wife. There isn't much to be done as far as physical therapy goes. It can only waste her strength instead of building tone. I think the usual daily activities are best for an ALS patient and even then, this could tire her. Also medication seems to only complicate with other side effects in most cases, not all. If something is actually helping, of course I would say stay with it, but not much will help. We find that nutrition is important, so have her eat well, and keep her comfortable and loved. A good attitude and the lack of stress.... meaning eleviate fretting and panic... and you will do quite well together as a team. Help her find things to fill her days that gives her joy and purpose irregardless of her condition. I am not trying to sound like a doctor or a saint here, but just sharing my experience with my husband and our journey with ALS.M

It is my husband who is ill, his presentation was with a dementia but he also has muscle twtiching and it appears respiratory muscle weakness. Everyday is something new. His quality of life remains good but for me and my children it is horrific. This highly intelligent man is reduced to a simpleton. His mother and her brother died of ALS, we now believe his mother was also demented but not as bad as he is. He had an EMG which was "positive" a year ago but he has had very little progression of the ALS symptoms. I desperately want to find someone like me, young (I am 51 he has been sick for 4 years) and strugglling with this long drawn out painful death.
I would say your leg symptoms are pretty significant. I take my husband to a center specializing in dementia and with some knowledge of ALS but no one can really give me any answers.
Leslie,
Are you still out there and are you still looking for someone who is going through something similar?
I notice that your message was posted in 2007. I am new, and I relate to your words, and I would love to talk with you. I don't yet even know how to respond or how to post.
I hope we can connect.
Loralie

Hi Loralie. I checked and the last time Lesley was on the site was in August of last year. There are I am sure, people in the same situation as yours still here. Look through some of the older threads or use the search feature. I'm sure you'll find some input.

AL.