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ALS and FTD

Tmills
  • By Tmills
  • Posted May 23, 2007 at 12:40 pm · 17 replies
  • Shared with the public
0 Recommendations

My mother has both ALS and FTD (frontotemporal dementia). I am wondering if there are others out there that maybe experiencing these 2 diseases hand-in-hand? She was first diagnoised with FTD and 4 months later with ALS. In her case, the FTD may be a blessing in disquise, as she doesn't really realize or dwell on the changes that are happening to her body. I think if she were cognitive of what was taking place with her body she would probably hibernate. Her legs are getting weaker, which concerns me, as she is still very determined and will walk, however, she has had falls. I have suggested to her primary caregiver, her husband, that he push her in a wheelchair as much as possible and if she did try to walk he needed to assist her. Her breathing is getting more labored, she appears to be more tired. She hasn't been able to speak for close to a year now, but she will write on a whiteboard, but is usually the same thing, her wanting to come to my house. Like I said I was just putting feelers out there to see whom else my have experiences with this 2 particular diseases.

Signed - Tanya

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Spasmodic dysphonia ALS Falls Dementia Stress

17 replies

pattyf

Hi Tanya,

I don't have any information about the combination of these diseases, but I do have some advice. Please continue to ask your Moms husband to push her in the wheelchair. My Moms walking got difficult and before we could convince her to have help during the day, she fell and broke a rib in her back. Painful to say the least and really made things even more difficult for her.

Blessings and best of luck.

Patty
CALS for Mom, earned her wings 1-2-07
My Angel!

Oldchuck

Tanya,

It is not uncommon to see these two diseases together. I have seen a number of articles in the literature connection the two diseases in specific cases.

If you have not yet done so, get your mother to an ALS Clinic where they will have a multidisciplinary team evaluate and advise her. If she is falling, bone breaks will follow so insist on her using a walker or, better, the wheelchair. The clinic will evaluate her breathing and offer the proper treatment, the first most likely being non invasive ventilation which involves the use of a bilevel positive airway pressure device (Bipap). The sooner that you can have her consult with an ALS clinic the sooner the available devices to make the quality of life better can be made available to her.

Again, do whatever it takes to keep her from falling. The last thing you need now is a broken hip.

God luck and God bless you.

Ole Chuckles

Joanie2

Tanya,

My neurologist has told me there can definitly be a relationship between ALS and FTD. I'm sorry I don't know any details but next time I see him I will ask for his sources.

Joanie

Tmills

Thank you all for your comments and support. My mother was diagnosed in August of 2005 with ALS. We had taken her to Mayo Clinic in Minnesota. She has not been to any ALS clinic in Michigan were she lives, she was scheduled at one point and got cancelled...long story. She does see a neurologist and pulmonary doctor on a regular basis. Her next appointment with the pulmonary doctor isn't until next month. I'm a bit concerned, given her mental state, if she would even be receptive to any type of non-invasive breathing machine. We will see what the doctor has to say. I try to stress to her husband the importance of her safety, if he thinks taking care of her now is labored, he would be in for a rude awakening if she were to really injure herself. But most importantly I don't want her to be hurt in any way. I'm getting off on a tangent now. Thanks again for responding to my blog, I would have written one long ago, but this blogging stuff is new to me...took me a bit to figure it out.

Take care to all....

Tanya

SparkUp

Hi Tanya,
Finally getting a message to you! My Mom has bulbar onset Familial ALS wtih FTD. 2 of her brothers had limb onset and when she began showing signs of mental decline, ALS wasn't even considered. Had no idea they could be related. We estimate this began about 3 years before she was officially diagnosed March 2007. She can still talk and walk, though she is having more trouble and fell again last week. Has been difficult to get her to accept the aids that we try to get her to use. Taught her to use the lift recliner and that night, she couldn't remember how to use it.
Dad is caring for her and it hasn't been easy. There were times recently when she couldn't remember how to make her cell phone work or couldn't recall what day it was.
After a recent problem, she commented that it must be due to her condition. She is aware of what is happening. She has laughed during prayer, and gets very emotional.


How long has it been since your Mom was diagnosed? Must be frustrating not being in control of her care. Will be praying for you!
Susan

Tmills

Dear Susan,

Sorry I have been away, I have 2 children that are active in sports and one being a teen ager I don't get much computer time at home. My mother was diagnosed in April '05 with the FTD and in August '05 was got the diagnosis of ALS.
Hide sight is 20/20 they say, and thinking back...in June of 2004 my mothers behavior was a bit different, forgetting how to start her car, bless her heart she keep going to work until they started to repremand her for making mistakes. In November of 2004 she was off on long term medical leave, at that time doctors were thinking she was depressed.
Again when thinking back, it was June of 2003 that she would do things that were a bit out of the ordinary, but never seemed to really throw up a red flag. She too would have emotions that weren't appropriate for the moment. I remember asking her what was bothering her at work and she just started to cry, I think she was just feeling confused but didn't know why. Breaks my heart, she is such a loving person. The day we got the diagnosis of FTD, she looked and me and said "Is it going to be bad" and I asked her "Do you feel bad?" and she said "No" to which I replied "Then it won't be"
The most difficult thing is to not know what she may have on her mind. According to the neurologist she still has thoughts, but how rational they are is not known. I only want for her to have EVERYTHING she needs and her ability to not communicate along with the dementia and not having control of her care, is VERY frustrating. I have to rely on God to watch over her and count my blessing that was blessed with such a wonderful mother. I will try hard to check this blog more frequently.

Take care.
Tanya

niki-b

Tanya, Hi, My mom has been diagnosed wit Als with Ftd. It began as behavior changes (very slight) like 7 years ago. She then developed something called spasmodic dysphonia in which the voice box does not open and close as it should. She began botox but soon that stopped working. We still had no idea what was really going on. The behavior changes continued and I thought she was depressed or going through some "mid life crisis". Also, she had no physical symptoms at all during this time. Over the next several years as her speech continued to slowly decline she finally went for a second opnion re: her spasmodic dysphonia. A new neurologist examined her and then called her later in the week and informed her over the phone that she had PIC's disease. Her behavior began to continue to change slowly and she became quite paranoid. I don't know if she literally had any hallucinations but she would say for instance that there was a neon sign at the end of the driveway to let the cops know where she was so they could come and arrest her. When I walked to the end of the drive to have her show me she stated that they must have taken it down. She had several things like that that she would stick to and have (delusions?) about. The cops, some neighbors, etc. That was about 2 years ago. She was diagnosed with als right before Christmas 2006. She did not have any real physical symptoms at all, only mental but her speech had severly declined and it was very difficult to understand her. She is unable to speak now, though she tries. She is also mostly unable to write her wishes as the words seem to get confused in her brain. Her breathing has become more difficult. She cannot eat or drink and has had a feeding tube since about OCT 2007. She still will try to grab food and eat it, as she doesn't understand, or doesn't want to. It is very difficult for her to walk now which is something that has developed quite quickly. On Christmas morning of this year my Dad came in at like 5:30 to say he was taking her to the ER. She fell out of bed and hit her head terribly hard. She had a baseball size lump and two very swollen and black eyes. At night she will not stay in bed and gets up 15 or so times to find my Dad which obviously leads to the possibility of another fall. It seems as though things are now progressing quite quickly. I don't know if this is familial but on my mom's side there are an awful lot of neurological diseases. Great uncle with Als, cousin w/ MS, Grandma w/ alzheimer's. Mom with ALS. I just wanted to share, it's hard to find people that can relate to what I'm/my family is going through. A couple of my friends didn't even know what ALS was. My mom will be turning 60 on Jan. 10th. Thanks, Niki

Suni

My husband was diagnosed in 1/08 with ALS and FTD. It was first thought he had Alzheimers, but, after going to a multi-speciality hospital the correct diagnosis was made. We have been going to an ALS clinic and I highly recommend this. You will get so much information that can be very helpful. You can also e-mail the staff if you have questions. An ALS coordinator for your area can also be very helpful -especially with resources and equipment. So far, he's doing well with the ALS but the Dementia is getting worse -particularly his ability to form words. He does better when he's relaxed and just with me. I am gradually trying different ways to help him. A calender with color-coded entries (his appointments in red, mine in green, both in blue) has really helped. I use a sticker with "today" on it which I move from day to day on the calendar. If he's trying to tell me something and having trouble, I ask him what the subject is. If he can do this I can figure out what he wants to say. It's great to correspond with other in this situation.

lisatuc

Just last month my father FINALLY agreed to go see a Dr. for what I was sure was alzheimers, but got a totally different diagnoses. Turns out the alzheimers was actually fts and he has asl which was a total surprise to me. Now through my reading I am seeing that the two together are not very common and possibly hereditary. We have one cousin who passed from als and had deminsia and two uncles that had als and were known as being "confused" in the end. sounds heriditary to me....ugh. Dad seems to not know why he cant drive and telling him what he cant really process seems just plain cruel to me, i just cant see telling him over and over that he will die soon.
just sharing my emotional overload.... lisa

RochesterBarb

I read an article that said that although the main contention is that ALS does not affect the brain, their study had found that close to 50% of people exhibit some sort of frontal lobe deterioration. I wish I could find it for you right now... but in my sister it was exhibited in rude behavior. I'm not sure if it was from the reduction in oxygen, the anger over the disease, or the frontal lobe deterioration that this article talked about, but for anyone else reading this thread, I agree with the person who suggests finding an ALS clinic with a multi-disciplinary approach.

SparkUp

Lisa,
Our stories are so similar!! Mom was showing mental changes and when we were told it was FTLD brought on by ALS, it was like I was hit in the gut. She had just lost 2 brothers to limb onset ALS and a cousin years ago and had never heard about FTLD. We obviously have the familial too. Have met a couple of people that have dealt with this but it is very rare. Brings unique challenges! Had a chance to find out what Mom's wishes were as far as participating in research(we are) and feeding tube, vent, etc. That was very helpful as she progressed---knew we were following her wishes. She passed in Dec 2008.
I need to run but would love to visit with you or anyone else dealing with this. Also mention that alot of us CALS/PALS are sharing on Facebook too. Have a group for FALS that anyone can join.
Take care!!!
Susan

lisatuc

I just cant get over the fact that this is so rare. Als is only a physical problem I thought but now I know better.
Every day we have a blown out arguement over the keys because he is just plain not safe to be driving. The problem is he fills "Fine" and cant grasp that there is something extreamly wrong. His arm twitches all the time and when he is in an upright position breathing looks very exaggerated.
Oh...and by the way...when i say blown out arguement I mean worried for
the safety of others type of arguement. I'm scared one day he will lash out on mom when I'm not there to diffuse the situation and this is not normal behavior. The inability to understand is one thing but he seems almost obsessed and HIGHLY angry which worries me. We can barely deal with the physical aspects of this disease because mentally he is not letting us help. Now he has decided the doctor told him he is ok which is just not true.

Oh-and he has been real bizzare about his eating habbits the last couple of years. He will only eat a bagel in the morning at 8:00 and a pot pie at night at 6:00. To the point where he wont even have thanksgiving or christmas dinners because they dont fit into his exact eating plan. That was a shocker! I'm sure he doesnt get enough food but the wierd rules he has set for himself get in the way...the poor guy.




Bless all of you who are or have dealt with this disease...it feels like two nasty cards have been dealt at once. I dont feel quite so alone now and talking has made things a little better. Thank you all soooo much for having the courage to share on something so very difficult...........lisa

SparkUp

Lisa,
I'm so sorry that the FTLD is causing these behaviors. Are you getting any assistance/advice from your local ALS clinic? Alzheimers specialists may also help with you learn how to handle some of the issues. When Dad could no longer pick Mom up when she fell(he was in his late 70's), he made the hard decision to place her in our local carehome that has an Alzheimers unit. We were so lucky to have a very good facility in our small town of 400+. We knew she'd be safe and that Dad wouldn't risk getting hurt in trying to transfer her, etc.
She never had any outbursts. Would be more emotional, take off in the car, etc. Had to hide the keys.
The mental changes makes compliance with medications, safety issues, etc., VERY difficult. Mom got to where she couldn't talk and it was hard to know if she understood where she was, etc. Sometimes she would say a word or 2.....just so hard.

My best advice is to get some assistance to help you make decisions on what is best for him and for you. Another friend is dealing with this very same condition in her husband and had someone come into the home to see what he was like at home and advised her to start looking ahead. Preparedness and being aware of what issues you'll probably face is really best.
Make sure your Mom is taking care of herself too!

RochesterBarb

My sister's weird obsession was with Kleenex. She was insisting the aides use ONE (yes one) tissue per day on her, which obviously is absolutely ridiculous. Friends started bringing her boxes and boxes of Kleenex, but she was obsessed.

lisatuc

i read somewhere just yesterday that in ftd (frontal lobe damage opposed to alzheimers where the whole brain is shrinking) it can cause repettitive or o.c.d. type behavior such as dressing or going to the bathroom over and over in a ritualistic way. The brain is such such a complex thing! This isnt in every case of course but some cases just end up with these weird behaviors.

greensmile

yep the brain is still called "pandoras box" because with all the reasearch and knowledge we have,we still know nothing.as a prof.of neurophysiology i know this one fact and it goes like this:if i knew all the info that i don't know,than i could possibly say that i know something.each ftd patient is so radically different,even though we may see on mri what appears to be similar findings,yet they behve differently.maybe this is physiological in tandem with socio-familial factors,or educational,or genetic,we simply don't know.i do know that we all must pray for a cure,never ever give up hope,and,yes,do try not to lose our smiles.
G-d Bless :) :) :)

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