advanced without bulbar symptoms yet?

[beccag]

hello everyone...my mil has ALS with dementia and has lost the use of her legs and most of her hands...she has declined mentally very much (her ALS has caused frontal lobe dementia) and she is now starting to have a wiggly voice although i think that i am the only one who seems to be concerned at this point over this. i am concerned she is beginning to have bulbar symptoms now...and i know that is not good. do any of you have experience with ALS with advanced symptoms in other areas but not bulbar yet and if so....how long did it take to notice the bulbar symptoms and how quickly did these progress once the bulbar symptoms were seen? any info you have would be helpful. i know this disease is different with everyone but your experience would help us to maybe be a little more prepared. please feel free to reply. thank you so much...sincerely
becca

 

[Debbie53]

similar situation

Becca,

Yes, my dad has limb onset, really bad, legs and hands mostly. But he can't really cough anymore or blow his nose. His breathing is very shallow and he's on oxygen as needed but mostly he hasn't needed it. A month ago he could walk across the room fine with a walker...now he can barely stand in the bathroom for a few seconds. It's heartbreaking. His voice has changed a lot, too. What is your mil's dementia like? I have noticed him acting a little strange from time to time lately - like muttering to himself under his breath and being confused about many things. But then, who wouldn't be confused under the circumstances?

Debbie

 

[beccag]

my mils dementia started with her not being able to understand what anyone was talking about. she would be in on a conversation and look as if she was totally understanding it and then come in with a comment like, "yes, and i look like my dad" of course this had nothing whatsoever to do with what the conversation was...(so sad) now we can easily see that what we say either does not get in her head at all or if it does it is only there for seconds and then she is completely distracted and never regains the focus again...the subject is lost. for instance when talking about her disease and the path it will take...her eyes filled with tears (this was 8 months ago or so now) and then she looked outside and said, "it is snowing" and it was as if she never was told a thing...it was gone from her completely. the good thing about it we have found is that she isn not feeling overly sad and depressed about her situation...she can't...she doesnt get it anymore at all....and i guess that is a blessing......she is now in a nursing home as she had bowel obstruction which put her in the hospital for a bit 4 months ago and it plummeted her into decline with her limbs and mind....the home was to be temporary, but has turned into her staying there for the duration as she now needs skilled nursing care and we can't provide what she needs...we see that now. we didnt before. it is so hard. she has been doing a lot of throat clearing lately and some coughing, and i wonder if she is having bulbar symptoms starting now...that was the reason for the post....when did your dad get the bulbar symptoms? were they more sudden? or gradual? it seems like this disease catches us by surprize...we think she is at a level place for a minute and then "bam" something big crashes down and we see another big decline....is that what you have seen?
we are very sorry to hear about your dad though...it is a sad disease that breaks your heart...my uncle died of the very same disease except he did not have dementia...he was not on bipap...he was in bed fully aware...and he quietly fell asleep and was gone. i hope it is as peaceful for my mil and, sadly...for your dad. hang in there....we're thining about you at this time. maybe somehow we can help eachother by sharing the experience.....it weould be nice to have some idea what is next...then maybe we could prepare ourselvesa little....i dont know. thank you for replying...
sincerely
becca

 

[beccag]

hi debbie,
i just tried to reply to your message but didnt see this reply box so i replied to you and it went to my thread...please go there to reveiw what i sent to you in response to your message...ok? also, i wanted to ask...how long did it take from the time you started seeing your dads bulbar symptoms until it got to where he is now? and, how did it start? any infor u have would be helpful...please see my message to you that is connected to the original thread that you replied to...thanks so rry for the confusion, i never said i was computer savvy! hope your day is going well...i am thinking of you...

 

[Debbie53]

My fault, I've been spacy

Becca, I'm sorry, I didn't mean not to reply - things have been just crazy and I can't write more tonight but will tomorrow. Thanks for replying!
Debbie

 

[Debbie53]

Becca,

The way it started with my dad was weakness in his hands, then legs, then arms. Over the last year he's gone from someone who had to be careful not to hug me too hard (I have fibromyalgia) to a bedridden (mostly) old man. Three years ago, he was still throwing the javelin, shot put, and discus in Masters Track...he won several national titles when he was 81. Now his hands are so curled that he can't hold a book or feed himself.

I guess the bulbar symptoms have been slowly progressing this whole time, but they weren't as noticeable as the others. His appetite has gone way down and he's lost 40 lbs. this year. In the last 3 months or so, swallowing takes a long time. He can't really cough hard enough to do any good, he can't blow his nose, his once-booming voice is hoarse, and his breathing is very shallow. His lips were blue the other night so now he's getting oxygen, even though the "finger machine" says he's in the 90's. They put him on Ativan for anxiety, now he's so out of it he can't keep his eyes open. We'll have to reach a happy medium there.

Please let me know how your mil is doing. Yes, it is different for each person but the heartbreak is probably the same...I know exactly what you mean about every day being a new challenge, you can never rest and expect tomorrow to be like today.

Best wishes, Debbie

 

[beccag]

how's your dad doing?

hi debbie,
becca here...just wondered how your dad is doing...? my mil is still declining...very much in the area of her dementia...now she has lost her legs, most of her arm strength...she has lost muscle in her hands...and her cough is very weak and has no force behind it. i wonder how long before the next downturn is coming...it seems like everytime she declines...it happens very very suddenly. nothing is slow and gradual with this disease...have u found this to be true?
just checking in...
sincerely,
becca

 

[Vicki72]

Hi Becca my name is Vicki and I am new to this site. My uncle came to visit us from the Adarondac Mountains for Thanksgiving and that is when we found about his ALS. 4 days later he was admitted to the hospital for 2 weeks and had a peg tube put in as he wasn't eating. We found out he was diagnosed in the fall of 08 and has bulbar onset. He was not able to go home as he can't care for himself. He stays with my mom who just turned 81 (a very young 81 I might add) and I help her with his care. His disease has progressed very rapidly. He doesn't want us to feed him much any more and we have to fight to get him to take his meds. His walking is getting very unsteady and his speech is gone. He tries but it just doesn't happen. I think he is giving up the fight. He is on oxygen and going for tests to have a b-pap maching as his breathing is so bad. Soon we are going to have to put him in long term care as it is getting to difficult for my mom and I have a very sick husband at home i am also try to care for. I feel like I am letting everyone down and don't know where i am suppose to be, but if i can help you in any way i will do my best. Good Luck It is a very hard and emotional journey with such a horrible disease. The best to you Vicki

 

[topsfan]

Hi Vicki, Becca and everyone.... I find the posts very interesting as my mother (70 yrs old) was diagnosed a couple of weeks ago and this coming Wednesday we visit the ALS clinic for the first time. Mom has had the muscle wasting and weakness in the lower as well as upper limbs - although they say her legs are worse than her arms. She can walk for short distances, but has fallen several times. She has difficulty getting up and down from sitting. In late October, early Nov. she began with difficulty in swallowing and by mid Dec had serious problems with choking on saliva. She seems to handle solid foods better than liquids at present. Her speech is slurred, more so at days days end and then the voice also gets very faint.
from what I have been reading here, that appears to be the Bulbar symptoms?
Mom has lost a bit more than 100 pounds in the past year/year and a half... now I wonder how much was her trying, or de to her hiding swallowing issues or other symptoms?
Any thoughts?

 

[BethU]

Topsfan, so sorry for your mother's diagnosed. Those do sound like bulbar symptoms, and her weight loss could be caused by her difficulties chewing and swallowing. She may not be aware of it herself ... just finding herself with "less of an appetite" or it's too much bother to eat.

I'm sure the neurologist at the clinic will discuss nutrition with you both. Hopefully, the clinic will have some good solutions for her in coping with her symptoms.

Blessings to both of you. This disease is so hard on everyone it touches.

 

[beccag]

good morning topsfan

good morning topsfan,
becca here..i just read your post and wanted to write and tell u how sorry i am to hear about your mom. my mil was diagnosed almost 2 years ago. hers began w/leg problems and was misdiagnosed for over a year. she is now in an electric wheelchair and can run it (so far) with the movement of a finger. her dementia is making it so that she runs into a lot of walls etc...so i dont know how long she will be able to continue with that.
she is becoming more and more unaware of things...is more in her own world. she has decreased muscle strength now in her torso, and tomorrow we see the pulmonologist to see if she needs bipap at night as her diaphragm is weakening, and her cough force is poor. it could be that your moms weight loss is due to troubles eating/swallowing...but i wonder too if it is not from her increased effort to just get around? my mil lost weight at the point where she was exerting so much effort just to get around...it was like she was always climbing a mountain...that had to burn tons of calories.... now she is in the chair and cannott use her legs at all...no standing...nothing...and her arms are not too far behind...she has musc;e wasting in her hands a lot now and her writing is getting so faint i can hardly see it. the doc expects a plunge downward anytime....it seems that it is coming too....
i am so sorry again for your mom...if u have any questions, please feel free to ask...it sounds like my mils and your moms als started similarly....it is a painful process....glad we have this forum. it is great.
sincerely,
beccag

 

[topsfan]

Hi Becca,
Thank you for the thoughts and sharing about your MIL. We took Mom for her first visit to the ALS clinic at Georgetown Univ. Hospital. Quite and impressive operation. The neurologist here in our small town suspected ALS and felt 98% sure, but he sent us down there for confirmation. As you probably know the procedure better than I do... we were seen by what seemed an army of doctors and therapists... all of which came to us, rotating through the room. Prior to going there, she had not been given a breathing test, so they did it there and they reported that her lung capacity was only at 43%, which they deemed a strong indicator that this had been taking a toll on her for quite a while. A bi-pap is in her near future.
She failed the babinski test and between that and other aspects of the exam - seeing the muscle fasculations (sp. sorry...), ad the results of a previous EMG, they were convinced that she indeed has ALS. They are scheduling another EMG at the clinic so they have their own results. I'm figuring then they can comapre the results from a month ago and see if a progression is notable.
Her weakness is far worse in her legs - one more so than the other and in her arms as well. Swallowing difficulties at present are mostly liquids, but mom doesn't always tell the truth in regard to her troubles. We have noticed she is more likely to order softer foods and finish those over the harder to chew types, although she won't admit it.
There was talk of keyboard/voice machines, power wheel chairs, feeding tubes and respirators... at present she says no to them both. We also wonder about the drug... Rilutek and what the real point in taking it is for a 70+ year old to extend misery for her that much longer? Not trying to sound negative, but she doesn't want to suffer longer than necessary and we don't want that kind of life for her either. What is your experience? Do you know if it improves how they feel? How they function? So many questions, and so many more questions we've not even thought of yet.

 

[BethU]

Topsfan ... I'm about your mother's age, and I tried Rilutek and it seemed to make my symptoms worse, so discontinued it after a month.

I base all my decisions on "quality of life." If something helps me feel or function better, I'll do it. If it doesn't, the heck with it. Some people do report feeling better taking Rilutek, so it is an individual decision.

Take care.

 

[Al]

Hi topsfan. I'm not quite 60 and take Rilutek. If I were 70 I'd think twice before taking it. It can be miserable on your stomach. The cost $700 per month can be a factor. I have heard some people say they feel better on it but the drug is not supposed to work like that so I question whether it may be the placebo effect making them feel better. It's a tough call. I'd use the search feature above. There's lots to be found both pro and con.

AL.

 

[beccag]

good morning..
becca here...i was glad to see your post...i am so sorry about your mom..... it does cause a flood of questions and a lot of unknowns...
i will answer anything i can...as to the rilutek, yes we tried that, but it gave her serious uncontrollable diarea and that would not do...it was not worth it to her as she knew it would only prolong her life by possibly 2 months time...and, we all agreed, that was just more suffering for her. so she is not on it anymore.
she fell day before yesterday out of bed...seems ok, but still...it was scary. the respiratory people came to fit her for a bi-pap, seeing her there w/that on was like a slap in the face with reality that we dont want to see. i cried after i left for home. it is so sad...so hard. but i am better today and hoping all will go well today. my mil says she does not have trouble eating, but she does choose softer foods, and suddenly, after being a pasta lover her whole life, she doesnt like it. we think she just has hard time handling it in her mount.....sounds like your mom a little...
hang in there now, and try to "roll with it" if we project too far, it seems harder.
hope your day is good.
sincerely,
becca