Bulbar onset

The two most famous cases of A.L.S. are that of Lou Gehrig and Stephen Hawking. Stephen Hawking’s illness is somewhat atypical for A.L.S., in that most patients with the disease have a lifespan of 2 to 5 years after diagnosis. Longer lived patients survive 10 to 15 years. If indeed the underlying disease is A.L.S., Stephen Hawking is the longest surviving patient ever.

Lou Gehrig’s performance as a Yankee started declining in 1938, mostly his power at the plate. By 1939 he was having problems running the bases, fielding balls, and connecting with pitches at all. After 2,130 consecutive games played, Gehrig benched himself. Weeks later he went to the Mayo Clinic where he was diagnosed with A.L.S. Two years later he died.

Stephen Hawking first noticed symptoms when he was rowing. He didn’t have the strength he previously had, and then he started falling down. Over the next 40 years, he has gotten progressively worse. At this point in his life, he uses his cheek to control his speech A.A.C. device.

The first symptoms of A.L.S. that mom noticed were that her tongue and throat felt odd. Not loss of strength in her arms or legs. We (her family) started noticing that she slurred her words, and my brother and his wife talked mom into seeing a doctor. She got her diagnosis in March 2007 and lived 18 months afterward.

The prognosis for a patient with A.L.S. can’t be determined with specificity. Some patients live longer than others, and the reasons why are largely unknown. In two visits to the A.L.S. clinic at Virginia Mason, the doctor there refused to even speculate. For one, he thought knowing lowered the morale of the terminally ill. But the main reason was that there just isn’t any way to predict.

One thing that is known is that people with bulbar onset A.L.S. tend to have symptoms that progress faster than patients with limb onset. Bulbar onset is when the first symptoms show up in the function of swallowing. The medulla oblongata is also known as the bulbar nerves. They control the muscles that effect speaking and swallowing. Typical limb onset A.L.S. affects all the limbs first, sometimes progresses to the bulbar nerves, and lastly affects the diaphragm. For some reason that generally seems to take longer. Bulbar onset affects those nerves first, followed by arms and/or legs, and finally the diaphragm. In mom’s case, the decline in her breathing came concurrently with the loss of function in her arms and legs. And the prognosis, rather than the 2 to 5 years that most limb onset patients might expect, is 18 months to 3 years. Mom’s illness fell at the short end of that range even.

Bulbar onset has a whole different set of challenges than limb onset. Communication and eating are the first set of concerns for bulbar onset patients. Mobility and strength are prime problems for limb onset patients. Mom didn’t lose enough strength in her legs for that to be a serious concern until the last few weeks she lived. Another patient we knew didn’t lose the ability to talk or swallow ever. Because of the differences, in the early stages the same disease doesn’t even resemble itself.

This is one of a number of articles I’m writing to bring up awareness about A.L.S. and to encourage donations to the 2009 Walk to Defeat A.L.S. I’ve set up a donations page to collect money, where donors can claim one of over 100 books as a thank you gift. If you don’t have the money to donate, you can help by publicizing and linking to that page. I’ll be giving away a signed book by Elizabeth Bear for those who help publicize the drive (and more prizes will be forthcoming). More information on that offer can be found here.

176 thoughts on “Bulbar onset”

  1. My special aunt was just (July 2009) diagnosed with ALS (bulpar symptoms started in March 2008) drs. This helps to understand what to expect

  2. my mother has ALS and she struggles with extreme saliva production..Even to the point of gagging her at times..Any suggestions? home remedies? Her doctor has prescribed two different medications but neither has helped, in fact the problem seems to be getting worse..

    1. My friend has bulbar-onset ALS and experiences extreme salavation as well. The best remedy is a suction machine, but she was told that a Dramamine patch behind the ear has been known to help. It has worked for her. She was also told that Botox injections behind the neck are helpful too and should be covered by insurance with a Dr’s perscription. My friend hasn’t tried this option. Best of luck to you and your mother.

  3. thank you so much for posting this. my mom has exactly the same thing, bulbar onset ALS and has received stem cell treatment, electro shock therapy, and rilutek for it.

    1. My husband has Bulbar onset too. So far no opportuntity to participate in stem cell therapy. Where did your Mother receive her treatment. He’s on rilutek.

      1. Stem cell trials are about complete. We were told by the ALS staff at Mayo that they weren’t as promising as hoped. So sorry for your dad’s diagnosis. My husband was dx with bulbar onset February, 2012, passed away June 30, 2015. He lost the ability to speak and eat early on, but remained mobile and independent until his dying day, although very weak. His diaphragm failed at the end. Hate this dreadful disease.

  4. My husband recently died of bulbar-onset ALS. At age 67 his original diagnosis was dementia/alzheimer’s disease. 6 months later he had a dramatic amount of weight loss, muscle wasting, and then his speech became slurred…fasciculations were noticable in his thigh..the dr. changed the diagnosis to ALS with frontemporal lobal dementia. He lived only 5 months after the diagnosis. For those of you with loved ones suffering from this disease..I hope you have a strong support system. don’t hesitate to as for help with their care…it is a difficult journey for everyone….

    1. Hi my mother in law hasn’t had a definate diagnoses yet but her neurologist has said it is likely to be bulbar onset MND. It’s really frustrating has this has been on going for 6 months and we still haven’t got any definate answers. She has slurred speech and finds it difficult to swallow. She won’t tell anyone in the family apart from me and my husband and whenever doctors mention it she clams up and doesn’t accept it. I am really worried that if they do diagnose this cruel, awful disease she isn’t going to cope x

      1. The diagnosis definitely takes a long time! I think they just want to rule out every possibility before they give that awful news! My dad had symptoms for well over a year, thinking it was a stroke among many other things. I’m sorry you are going through this and pray for her comfort!

        1. My dad was also misdiagnosed for a year first. They have no way of 100% diagnosis without autopsy, so they have to rule out all other possibilities first… It was November of 2014 when the neurologist told my dad that is what he was thinking.. His first symptoms showed up at the end of 2013… It was January 2015 before he was diagnosed and we lost him in November of 2016. It isn’t easy for anyone to face. I would recommend finding a support group (there are several ALS support groups on Facebook as well as the local ALS association and possibly other groups in your area). It helps to connect with families who are going through the same thing. This disease is worse than cancer in my eyes… At least with cancer, there is hope… There is a chance. It breaks my heart a little more everytime I hear of another family affected by this horrible disease! My thoughts and prayers are with your family. *Praying for a cure every day.

  5. My heart goes out to all of those who are personally affected by this disease. I will do what I can to raise awareness and concern. Thank you for your eloquent posting about your mom. My sympathies to you and your family.

  6. Hello, we just received a confirmed diagnosis of ALS for my mom. She started a few years ago. It got very bad to the point where her nutritional needs were not being met and her speech had worsened. She was put on a feeding tube in Nov. 2010. EMG results kept showing negative for ALS. I am realizing now that this is probably b/c her ALS is in the form of Bulbar Onset. I am struggling with this and am so glad to have found this forum

  7. sorry I wanted to edit my reply after I wrote it but I had entered it already.
    I wanted to say that my mom started a few years ago with swallowing diffiuculty and it got so bad that her nutritional needs were not being met and her speech was deteriorating.

  8. I have the bulbar onset and noticed slurred speech in July 2011. As of Feb 1, 2012 I can not speak, produce saliva at alarming rate, and have almost lost use of hands and arms. No neck strength. Constant fascicilations, and upper body muscles atrophying daily. In short….Fading fast.

    1. It is sad to hear your ALS is progressing so quickly. My Mom was diagnosed with Bulbar onset on 12/7/2011, slurred speech was first noticed in May 2011 and after several tests, it was confirmed. It seems the progression is getting faster for her as well.

      1. Pat…thanks for your Comments. Fortunately my spirits are high and enjoying my final months on earth. Pretty debilitated, but love classical music that transports me to heights of joy. Wonderful wife as well. Am 59. How are things with your mom?

        Much love…Mike

        1. Love your attitude Mike…..my sentiments exactly…..I just turned on my waterfall, fireplace, lit candles….it’s the little things:) 15 months ago I had one tooth implant, speech changed after that so for over one year all Dr.’s were looking at dental damage……just got diagnosis of Bulbar Onset ALS…..and I’m very thankful I can still get some food down:) Thank you for your uplifting post in the midst of chaos we can find peace. Blessings to you Mike.

    2. Micheal my husband got dx January With bulbar onset. His symptoms started about May 2015 with the slur speech,over produce salvia and excessive weight loss, and difficulty swallowing. He now have a feeding tube due to the fact that he’s loss 100 pounds within a 1 year and choking everything he try to take food through his mouth. Everything moving so fast I’m really just in shock and scared for myself and kids.

      1. Darshone,

        I am so sorry to hear that. I look forward to a day when the diagnosis of ALS isn’t so bleak. Your husband’s symptoms are just like my dad’s. He was diagnosed in January of 2015 with symptoms a year prior. He had a feeding tube by April of 2015. That helped tremendously to stabilize his weight. By the end of the year he wasn’t able to eat anything at all. I have not heard his voice in over a year. This year has brought on new challenges. He is losing strength in his right arm and left leg. He is using a cane to walk for now, but I don’t know how much longer he can put off the wheelchair. He is using a choke assist machine now as well. They have put him on hospice and he gave up his car keys about a week ago. He has started telling us it won’t be long. I hate that your family is having to go through this. It breaks my heart on a daily! Everyone copes differently. For me, I learn as much as I can about this horrible disease and try to educate others. Have you looked into support groups in your area? I don’t know how old your children are, but some organizations even have groups for kids of PALS (People with ALS). My best advice to you is to get out and make as many good memories as you can with him while he is still able to. Create a small bucket list. Give him something to look forward to. My thoughts and prayers are with you and yours.




    1. The only thing that worked for my mother was suction. There was medication that made her produce less saliva and mucous, but she wouldn’t take it because it also dried out her eyes.

      We’d heard that botox injections into the saliva glands sometimes help. The ALS specialist at the Virginia Mason Center in Seattle said he didn’t have good luck with that. Nevertheless, we did get a reference to doctor who did botox injections for plastic surgery normally and tried it. Unfortunately, it didn’t work for mom either, even temporarily.



      1. My Dad was diagnosed with Bulbar onset ALS in January of last year. We noticed slurred speach a year before that. It is the hardest thing I have ever had to face… Reading these comments helps me not to feel so alone… Those three little letters haunt me every single day… Most days I can cope though. It helps to hear from others who know my pain. Thank you all

    3. This is Melanie, Mike’s wife. Unfortunately, Mike died on 2/29. There are a couple things that might help your husband. One is a machine called a cough assist and the other is a suction machine. Both are easy to use. Insurance should help cover or you might be able to borrow from local ALS chapter. Hope this helps.



  11. I need information – please. My mother is 71, 5’7″, 240 lb.s. Mom was just diagnosed with bulbar onset ALS. She has major speech and swallowing issues. Mother doesn’t want a feeding tube or any other life prolonging or life saving measures taken – those were her wishes long before the diagnosis, and they have not changed. Mom can’t swallow any of her usual med.s (like Prodaxa for atrialfibrulation), and doesn’t care for them to be crushed and mixed in with applesauce. Home health services started today ( not hospice). We’ve started to put Thick It in water and other thin liquids, but mom’s not willing to drink but so much of that. My question is…how long does mom have to
    live? Please, be straight with me.

  12. My husband was diagnosed with bulbar onset on Feb. 4/2010. He had feeding tube “installed” in September of the same year. He was a wopping 195 lbs at diagnosis, he is now 140 lbs but continues to accept 4 feeds a day. His speech is almost indecipherable now. Our biggest worry is that he will get a cold. Anyhow, just found this site and thought I would put my two cents in. Know that he thought he would be “gone” by now. It is so different for every individual, isn’t it. He does use a suction machine and it works most of the time. Has anyone else tried the Dramamine patch?

    1. The patch does help decrease the saliva. The saliva is still bad and she suctions constantly still – but without the patch it is worse. My mother uses it. She has the the bulbar onset of ALS – was diagnosed about 14 months ago – declining rapidly. God bless all of you who are dealing with this disease.

      1. Thanks Diane and of course in my increasingly scatterbrained way I have forgotten the name of the patch. D something? Not sure if it is available in Canada? Anyone out there know?
        On another note, met a gentleman the other day who had hand tremors so I asked him what he had “Parkinsons” was the response. Upon hearing what my Ron has he said he had a cake walk compared to Ron. Hmmmm . . . . . . . . . . .

  13. My fiance Kat has just been diagnosed at age 42. Her speech began to slow and slur in November 2011 (5 months ago) and she is almost indecipherable now. She is just beginning to dribble a little, and has had some issue with swallowing. We had plans to get married in September this year, but having read through the miserable progression of Mike …. jeez, can we wait?

    1. Sorry to be horribly blunt Rowan, but do not wait! Do your best to live one day at a time and enjoy the good moments. Ron and I still have some pretty good moments every day, laughing and joking with friends and family. Hang in there and hope you do get married for both you and your fiancee’s sake, you won’t regret it in your after Kat life.

  14. My heart goes out to everyone with this disease and to their loved ones. I lost my father in march 2004 with the bulbar onset of als. He started with slurred speech and alot of coughing. He had trouble swallowing and putting toothpaste on his toothbrush. He was worked up by a neurologist to rule out stroke and any other neuro diseases. It was pretty clear to the doctor early on his hunch was that my father had what he called motor neuron disease or als. His first symptoms started in october 2003. He stopped talking by february and had a feeding tube placed. We ended up getting a suction machine at home through the insurance. The als association was also a big help with my father for his palliative needs. Its so important to have a support system around and if not contact the als association for this. We lost my dad at age 60. Not a day goes by that I dont think of him or miss him. Again my thoughts and prayers to all.

  15. Rowan, I wouldn’t wait either. I’m sorry too for that and I’m sorry to say that time is not on your side. I would get married as soon as possible or as soon as you are able to. For your Kat, things are only going to keep progressing and become more difficult for her. Enjoy the time you have with her as husband and wife as much as possible. It will be the best thing for the both of you. It will be the best gift you could ever give her with the time you have left with her. My prayers go out to the two of you.

  16. My Father has been diagnosed with Bulbar Onset and it started with his speech being slightly slurred in summer 2011. By the fall 2011, he was having a noticable hard time swallowing and constantly clearing his throat. He just visited in May 2012 and is extremly difficult to understand and is now falling at times and has a hard time with his left leg clearing things and need to at times pick it up to help. He lives alone in another state from me, luckily we have family close by that checks up on him, but I live across the country and only have the phone available to me to talk to him which is very hard. Lately he has complete conversations with me and I can not understand him at all. He is still driving too. I am very worried and just feel so lost. I feel like there is no next step but to wait. And I think when I talk to him is today going to be the day I totally can’t understand him anymore. He does not want a feeding tube or breathing device if it comes to that. He does not want to tell me anything going on as he thinks he’s being a burden. I feel lost as I don’t know what I can do for him. From what I’ve read Bulbar progresses much quicker, so I’m wondering what’s next. I know that no one can tell me a time frame, I guess I just feel like I need to type and see what others experiences and thoughts are on his progression.

    1. Hi Christi,

      If he does not want a feeding tube, he won’t have long after his speech completely goes, as he won’t be able to swallow either. The ALS won’t progress to his breathing because it won’t have a chance to.

      Still, even after his speech goes, there are ways to communicate. My mother was a prolific emailer after she lost her speech. I even set up a computer for her parents and showed them how to email so they could “talk” with mom. There are also text-to-speech devices like Dynavox that will speak what he types. They are expensive, but some insurance will pay for them, and some ALS Association chapters have ones for loan.

      But, if he is really adamant about not using a feeding tube, I would make every effort to spend time with him now. His time left will be measured in months rather than years. With a PEG tube, I wouldn’t hazard a guess.

      My mother adjusted very quickly and very well to eating via a PEG tube. It increased her quality of life, rather than decreased it. It gave us over a year extra of time with her. Only the last few months weren’t pleasant, but had she gone without the tube, the last couple of months wouldn’t have been pleasant either. And it sounds like your father is really close to the point where my mother got hers put in. It didn’t make mom any more of a burden. She did the food herself for 6 months after the tube was inserted. After that we had to help her as her hands could no longer open the cans of food. But feeding was actually really easy for us.

      It has to be his choice though. But it really isn’t a burden.

      Again, if he really doesn’t want to do it, spend as much time with him as you can now.

      Good luck,

    2. Hello Christi, I’m sorry to hear about your Dad. My Mom was diagnosed Dec2011, slurred speach started mid2011. Feeding tube inserted Feb2012. She also has FTD along with the bulbar onset, but from what I have read in other posts, her progression is not as fast. May I ask, how old is your Father? My Mom is a mere 53. I just had my 3rd child, so she has been enjoying grand-parent hood again, she smiles more than when first diagnosed…She was really depressed at first diagnosis. If she did not have a feeding tube (PEG), she would be worse off.. She does not like her BiPap machine and refuses to use it. I am trying to spend time with her. It’s hard because she has a short attention span and wants to leave anywhere right away. Also, she does drive still, unsure how much longer will be safe though. Such a dis-heartening disease. Very sorry to hear from you under these circumstances. God bless you and your family.

      1. Hi Patty, My Dad is 72 and has always been in great shape, you would have never thought he was in his 70’s until all this started happening. He is very independent and always has been.
        I am so sorry to hear about your Mom. We have a 3 year old and there was a period that my Dad didn’t really want anything to do with her but he now he wishes he could do more with her.
        I still feel like I just can’t believe this all and that it’s not really what is wrong with him.

        1. I wish your family well! My Mom has distanced herself a majority of the time.. Very heartbreaking to say the least. God bless.

    3. Hi Christi,

      My fiancee Kat is in a similar position to your Dad; diagnosed in mid March this year after symptom onset mid November 2011. Only 6 months since onset and her speech is completely gone, and swallowing is getting more difficult by the day.

      We investigated – and got – an iPad after checking out our text-to-speech options. We discovered a cheap and very good app called Speak It and given the iPads ease of use, light weight and effectiveness it might be a cheaper option than the robust but hideously expensive medical suggestions. Our neurologist was amazed that it did a better job than the bulky speech boxes at about one eighth the price.

      I suspect we will be looking at a feeding tube within the next couple of months and from there……?

      Good luck, I wish you the very best with your father.


      1. Hi R,
        My husband Ron, was diagnosed Feb., 2010, is unable to speak and has had a feeding tube since Sept. 2010. If you have any questions about that please feel free to ask. I must be doing something right as his nurses say it is one of the cleanest sites they have seen. I tried to find Speak It for Ron’s ipad, are you aware if it has another name? Good luck to all of you “living” with ALS.

  17. A dear friend of mine was just diagnosed with ALS. It sounds like she has bulbar. She is in denial & I am shocked & devastated for her & her family. I don’t know what to say or do for her. She is only 53 & her kids are 22 & 20. This is a horrible disease & I cannot imagine going through such hell!! Thank you for posting this site!

    1. Julie, I am very sorry for your friend and everyone she is close to. It is a tragedy, slow moving…My Mom is also 53 and was diagnosed 12/7/2011. Her speech became slurred just over a year ago, and after many tests, we were told she has ALS-Bulbar onset. Such a devastation to us all. I just had my 3rd baby, her 5th grandson & it’s been very difficult & will continue to be. I just pray God will hold us closer during this difficult journey. I pray for you and your friend, and of course her family. I try talking about it more and sharing what we are going through, seems to help a tad….. My Mom went through stages….denial, devastation, depression, anger, & now just coping, but more withdrawn. Again, very sorry for you all…

    2. Dear Julie and others,
      My mom just passed two weeks ago after a 16 month battle with Bulbar onset. She was 77. Days were long and terribly hard but I miss her so much and my heart aches feeling like I could have done more. My advice is to spend as much time with your loved one as possible as whatever time they have left is not long enough. Please, if you have specific questions feel free to contact me at matulino@gmail.com.

  18. My husband had been having hyper emotions,weight loss,difficulty swallowing 6 months before .
    He was diagnosed in nov 2011. I feel since the diagnosis his symptoms progressed faster. He never complained so far and we both are taking one day at a time. IPad is a good companion for them. They can just touch and email or speak thru their software.

    1. Good luck to you. Sometimes the symptoms will seem to progress quickly, and other times there may be a long period where nothing seems to be getting worse.


  19. My dad was diagnosed on May 30, 2012 with ALS. I value all that each of you are sharing. Right now I’m connecting most with Christi. My dad is a very young 71 yrs. old. People always mistaken him for my husband. I noticed his speech slurring on Xmas 2011. He was laughing and then couldn’t stop. It went straight into tears. He looked confused by the loss of emotional control. Now he is tough to understand. We bought him an iPad to use the app “verbally”(which is wonderful & free). He uses a cane, but is unstable. He has a right foot drop but refuses to give up driving. Behind the sense, our family is decided on this issue. I am and will be my father’s main support. My parents divorce was “war of the Roses”. I am almost 49 and have only seen my dad once a year at best since I was 13. He left and didn’t look back. For me, ALS has been the most horrible blessing. I finally have a dad. I won’t waste any precious time. We never would have had this chance for a relationship if a heart attack had taken him. A strange and horrible blessing. I hope I’m strong enough for the journey ahead. Love to all

  20. I was diagnosed with ALS in 2011, and have a problem with drooling, and swallowing.
    I have had problem’s with most of the medication for drooling, and went for a botox injection at the VA. After 10 days it has done nothing for my drooling, and my swallowing is much worse. I think they missed the gland. I just wonder if it should have been injected with ultrasound. I am afraid to have any more if it is just going to make me not be able to swallow.

    1. Raymond,

      My mother had a botox injection as well. It did not help at all. What the doctor told us is that botox only works sometimes on saliva glands. The saliva production can push out the botox before it takes effect. When he did the injections, he gave each gland about 4 shots in slightly different places to increase the chances one of them would get the gland.

      Certainly speak with your doctor about ultrasound, but be ready for the news that it might not help.

      As Rowan notes below, enjoy eating while you can! Dine out! Cook the tastiest food you know! Don’t let your last food be bland stuff.

      Good luck to you,

  21. My dad was diagnosed 4/12/12. His symptoms started about 1/2011. He has bulbar onset and he is now very hard to understand (he is able to write and he texts with his phone). He has trouble swallowing and extreme excess saliva. He has a hard time coughing up excess mucus. He had a sleep test recently and his dr. said he needs oxygen (at minimum) while he sleeps. He says he is sleeping fine and he feels fine. He says he doesn’t want a feeding tube and is not very receptive of any helpful devices (cough assist, oxygen, Ipad). My dad lives in an apartment by himself. I am getting worried that the disease is now progressing faster and he will need help but what if he refuses?

    1. Ray and JM, the bad news is this thing is progressive and it only gets worse. My fiancee was diagnosed in March this year after first symptoms in November 2011. By May her speech was gone and in July a feeding tube was fitted. Her mobility is now so affected she cannot drive and will likely be in a wheelchair within a month or two.

      I cannot express strongly enough my encouragement to get out and enjoy yourself as much as possible NOW! You will be surprised by how quickly it robs you of your joy for life.


    2. JM,

      The line between helping someone who doesn’t know he wants help and someone who refuses is hard to tell. I moved to be nearer to my mom, and she was upset about it at first, but I didn’t insist on helping at first. I just told her I wanted to be near her so she had the option. We asked her to move, but she refused, which is why I moved there instead.

      You know your father better than any internet people do, but perhaps his friends and your family can talk together to figure out the right approach to helping him.

      But I can absolutely guarantee he will need help. ALS progresses so that every sufferer loses some abilities they previously had. It pauses in the progression sometimes, but I haven’t heard of any cases of substantial remission.

      Good luck,

  22. My mother was diagnosed with ALS in Feb 2010. She also had bulbar onset. Her symptoms started as early as July 2009. She would slur a few words when she was tired. This got progressively worse and by Dec 2009 she was extremely exhausted and out of breath. She was sent from Dr to Dr to find out what was wrong. Finally after many tests she was diagnosed in Feb 2010 officially. I think we knew deep down, but we would grasp at any other idea besides ALS. At first it was denial, but eventually we had to come to terms with this disease. My mom was only 66 years old. She was adament that she did not want a feeding tube or other life prolonging treatments. She wanted to enjoy every minute she had left. Her progression was extremely fast. I went to visit every other week and each week something more would be happening. She passed after only 8 months after her diagnosis. I am forever grateful for the opportunity to spend time with her and tell her I love her. She was dignified and graceful about her situation. Her faith was unwavering during this whole process. Her last days she was unable to speak, unable to walk or control her neck. She was slowly using the ability to use her hands. I know that she is in heaven dancing with the angels. I am happy in the fact that she no longer has to be lying in a bed unable to help herself. I must say that hospice was a blessing for me and my whole family. They prepared her and us for what was to come. I genuinely felt their compassion. I pray for each of you here as I know the journey is not an easy one.

  23. My husband 68 was diagnosed with bulbar onset in May,2009. He uses cough assist but what has finally con tolled the saliva was getting upper and lower tooth gaurs. We got them because his teeth were clamping down on his tongue and his tongue was in terrible pain. To our shock, as soon as he started wearing them the copious saliva practically stopped. Noone was more surprised than us because we had never heard of it. He had tried several patches and meeds and nothing worked until the tooth guards. We had to get him to the dentist to make mold but it was totally worth it. I hop this helps many of you suffering from copius saliva.

  24. My wife was diagnosed with Bulabr Onset ALS in July 2010. Like all of your expperiences, her speech was slurred for a good six months before her actual diagnosis. She had a feeding tube put in November of 2010 because she was constantly choking on her food. She was always an active person and was a clogger (Clog Dancing) and even taught it. ALS in the intervening months has robbed her of the use of her hands, arms and legs. It started on the right side, her strongest side and has progressed to where her left side is all but useless and is fading very quickly. She had a problem with excess saliva until the hospice nurse got her some medication to control that, to an extent. The medication is levicin (sublingual), and scopolamine patches. She has to use two patches of scopolamine at a time but it all but completely dried her up. I am her primary caregiver and have been during the whole time she has had the diagnosis. I fear that her time is close though because the disease has seemed to come back with a vengeance after about three months of relative inactivity. Now she just sits in her lift chair recliner and requires support for her neck. she cannot hold her head up. I cannot stress enough the use of a suction machine, and the cough assist. They have helped her greatly. She has a Dynavox unit and again I can’t stress the use of that because it aids in communicaton. After all, ALS doesn’t affest your mind you are fully aware of everything that’s going on around you. It’s just that your body dies while your mind stays sharp. That’s what makes this disease so insideous and most of all sad. We both are Christians with a fim belief in Gods healling but his will be done as the Bible states. To all of you I cannot stress enough to take each day as if it is the last and cherish every minute you have with your loved one because the day will come when they are no longer with you, and you can rest in the knowledge that you did your best to make their last days as pleasant and comfortable as you possibly could. I could go on and on but you’ve have unfortunately heard this story too many times before. I’ll just say God bless you all.

  25. My dad has just been diagnosed with ALS after 6 months of testing for slurred speech. He still talks but hard to understand, his legs are weak and he falls frequently. He eats well, occasionally choking mostly on liquids. He still drives, walks w/a cane. He is progressively getting worse. Can you tells how long he may have or what stage he is in with this horrible disease?

    1. Hi Rhonda,

      Unfortunately, the timeline is not rigid. Sometimes ALS progresses really fast, sometimes it’s much more slow. And the progress goes differently for each patient. My mom never lost use of her legs. It went from mouth and throat to neck to her arms to her diaphragm. It sounds like your dad is progressing a little slower than my mom; she stopped eating after 6 months and went to a PEG tube. But there’s no way to tell if his ALS will have “spurts” or not.

      Sorry I can’t give you a definitive answer.

      Take care, Philip

    2. Hi Rhonda, being in the midst of a similar timeline (my wife was diagnosed 9 months ago, after 6 months of symptoms) I cannot stress strongly enough the importance of doing as much as you can now. The disease robs the patient, and you of mobility, energy, ability to communicate and to generally enjoy life. I did my research and predicted my wife’s death around now. She is in the final stages, in hospice care and just starting to have breathing difficulty. The disease absolutely does progress differently between people but I would suggest 6 months might be accurate if he chooses not to have ventilation.

      It’s a crappy demise, best wishes and PLEASE don’t procrastinate in enjoying your time with him.

  26. Hi Rhonda,
    My husband was diagnosed exactly 1 year ago. He his speech was the first thing to go. He uses an iPad with Proloque 2. That helps us on especially bad days. He has trouble holding a spoon or fork but can type simple messages. My husband can walk just fine but he’s lost huge amounts of weight. His disease is definitely progressing from the top down. It sounds like your father has a mix of things if he’s starting to loose balance and fall. My husband can no longer hold his head up which further complicates eating and drinking. He’s lost use of his right arm and hand and is loosing use of his left arm and hand. I will be feeding him soon. He decided early on to NOT have a PEG tube or any other assists. Unfortunately his bulbar onset has progressed so rapidly that he’s on Hospice at this point. We weren’t lucky enough to have several years to adjust. My suggestion is to plan like you have very little time. If you’re lucky everything will be in place long before you need to execute it. As others have said, each case is different. We wish you the very best.


  27. Hi,
    It saddens me to hear everyone who has been diagnosed with this horrible disease. My grandmother was diagnosed with Bulbar onset October 25th 2012. The doctors think she has had it longer though. Since she has been diagnosed ( because she had slurred speech) she has progressed rapidly. I can no longer understand her and when I do it’s only because I know what she is trying to tell me. we laugh and cry together everyday. I am with her everyday. She has the PEG in which was a must because every time she ate she would choke, and that scared her. She uses the cough assist and Bipap machine and everyday the suction machine. she is on some medication to dry the mouth but I think it thickens the mucus up causing her to get clogged up. She has comes to terms knowing she doesn’t have very long, It is hard for me to come to the realization she isn’t going to get better. This disease is horrible. everyday is hard. there was one day where she couldn’t catch her breath, turned blue in the face. I thought this can’t be it. I was shaking. fortunately she caught her breath, it felt like the longest moment in my life. She is also a DNR. I love her so much. she was and still is the biggest hearted person I know. Always there in my life. she never deserved this. My grandmother is 75. she made a “bucket list” which we did as a family.Next week she goes back to Virginia Mason ( it’s now a weekly thing) so we will see what they say. My father which is her only child takes care of her everyday as well. I am worried also this might be hereditary. My great Grandmother died a week before she was diagnosed. her mother was 98 years old. she could no longer walk eat drink. But no way to diagnose her now. thank you all for your time. I have been reading for awhile and decided to finally tell some of my story.

  28. Its been a long time since i visited the forum actuallu i never got back on since my original post when mom was first diagnosed on August 19, 2011. Mom passed away on January 9, 2013

    1. Diane,
      I too did not visit back to this forum since my first post. My dad also passed away, December 17, 2012. He was also in hospice care. He was first diagnosed in April of 2012 and died 8 months later. It’s a terrible disease and you’re right, all dignity is stripped of them. Sorry for your loss.

  29. She suffered so much at the end and the disease took away every ounce of her dignity. We had to put her in hospice because her care at home got to be too much for my 84 year old dad

    1. We used in-home hospice care, but we also paid quite a bit of money out of pocket for 24 hour caregivers to help care for mom. Caregiving for an end-stage ALS patient would be nearly impossible for any single person, of any age.

      I wish you all the best and to remember that as tough as it is, your mom’s suffering is over.


  30. My dad was hospitalized in early November for severe weight loss and trouble breathing. He did have a feeding tube put in and was put on oxygen (he also had COPD). He tried using the Bipap machine several times but didn’t care for it. He used a suction machine constantly. He was transferred to a rehab facility about 3-4 weeks after hospitalization. He was stable at rehab so we had to move him to either a nursing home or hospice (he could no longer live alone). We choose hospice because dad did not want a hospital like setting with all the intercoms and bells and whistles. He wanted some peace. He was at a wonderful Hospice House the last 2 weeks of his life.

  31. JM…my mom was in hospice 2 weeks exactly. She declined quickly once we put her in. This had me wondering if it was the disease or just all of the sedation meds. The last 3 days she had a fever of 104. It was a terrible end……i want to be happy that she is now at peace but the visions of her suffering are at the forefront of my mind

  32. Thanks, Philip for this forum. It is heartbreaking to read, but a wonderful place to share.

    My father is a young 70 and was diagnosed with early onset bulbar ALS in August 2012. He first noticed an issue with swallowing and slurred speech in May 2012. His speech has deteriorated so quickly, only my mother and I can decipher it. There is so much saliva that he isn’t sleeping at night. I will pass along the dramamine idea and see if that helps. Every meal is a challenge with choking and he has started to lose weight, despite the efforts made to soften his food. I heard through our local ALSA chapter that he should get a feeding tube before his breathing is affected, but I worry that he won’t consider it until it’s too late.

    My biggest concern is that my parents are in denial about what the future brings. I don’t blame them and I know they need to handle things in their own time. As a daughter and potential care giver down the road (when things become too hard for my mom to handle) I don’t know how to suggest management techniques that won’t hurt their feelings or make them face the inevitable before they are ready.

    My prayers are with every family on this forum. There is no easy path to handle this disease.

  33. KRS. May God bless you with providing you with the right tools and the right words to provide the best possible care. My parents moves to Canada from Italy in the 50’s. There was a huge language barrier so when ALS was diagnosed for my mom they didn’t have a clue what it was. Unfortunately…..I did
    remained at
    somewhat of a plateau

  34. KRS. May God bless you with providing you with the right tools and the right words to provide the best possible care. My parents moves to Canada from Italy in the 50’s. There was a huge language barrier so when ALS was diagnosed for my mom they didn’t have a clue what it was. Unfortunately…..i did. Mom was diagnosed in August 2011 and was at somewhat of a plateau for a year. She fell a few times and started to slow down summer of 2012. By the end of September she was using a walker. Then things spiraled downward. She soonafter needed a wheelchair, a showerbench then a hospital bed. She lost complete use of her legs at the end of November 2012. I remember my dad always telling me he didn’t think all of the equipment was necessary. Even while she was in hospice he thought maybe she would get better and come home. Yes, this forum is not pleasant but it at least helps you know you are not alone.

    1. I always found that knowing ahead of time how unpleasant things would be made things much easier to handle. 6 months before mom passed we started seeing her breathing deteriorate. I didn’t know what to expect though, so every visit was awful because I didn’t really know how much time I had left. But the last month was actually a lot easier mentally because we knew her death could happen at any day. The difference was I didn’t know at what level her breathing really was at the 6 month mark. But at the end her breathing was barely functional.

      (It was also much easier because the last couple of things she wanted to do we had already done. She had gotten to visit with grandchild #1 and attend her parents 60th wedding anniversary at 4 months before. And grandchild #2 was born about a month before, so she got to hold him. A lot of the stress was in worrying if she would make it long enough to hold grandchild #2. Once she did, mom was content.)

      As bad as it is, “will there be time?” is much harder than “any day now.”

  35. I knew moms time was drawing near but the day i got the call, it still came as a shock. Now i just want to help others. I will participate in the next run/walk in my moms area. Maybe I’ll even write a journal about my moms journey. I think the hardest part for me is how vivid her suffering was in her last days. I can’t even talk about it on here bc i don’t want to frighten anyone

    1. Diane,
      My mom was in hospice at home for a little over 4 months. But her major decline until the end was for about 3 weeks. That was 7 months ago and I still think and talk about her everyday. Yes I am happy that she is not suffering anymore but I am still numb from what happened to her. I think it is great that you want to help others! That is how I felt too and I have to done a thing. There just are not words to express how sad I am for you and what happened to your mom.

      1. Diane
        Its exactly one week ago today…almost to the minute that mom passed. I am sitting here bawling. I can’t bring myself to do anything but sit and cry. I’ve had my pajama’s on for three days straight. I’ll never stop thinking of her. I know the suffering is over, but it was such a cruel end. And for mom too the last two week were horrible

        1. My heart just aches knowing what you are going through. It is good that you are talking about it and crying about it. I became completely numb, almost like a robot, over the months that I was her 24 hour caretaker. And in the end, I never shed a tear. I was with her when she died and I stayed on task and made the phone calls and comforted others. And to this day, I am still numb. She was my mom, but also my best friend. I hope you find comfort somehow in the days to come.

          1. Thanks Diane, this forum is helping me believe it or not. A forum that talks about the damn disease that took every ounce of my mom’s dignity from her, is where I am turning for comfort. Why? Most likely because only if you’ve been there and witnessed the suffering can we compare the pain. Numb is good way to describe how I am feeling. I think its easier to type on this forum than it is to talk to a live person. A mom is a pivotal part of our lives and I too was very close to mine. Thanks for your kind words and understanding how I feel

  36. This is such a horrible disease. Your personal stories make me so sad to hear. I am 20 years old and have symptoms of Bulbar Onset. Has anyone ever heard of someone that young with Bulbar Onset?

    Thank You

  37. L, what symptoms are you having?
    My mom who will be 61 this month.was just dx with ALS, her symptoms are slurred speach, her tounge is wasting and I do see the struggles and gags sometimes when taking her meds, she seems to be eating good with out choking, I know it takes a little to manipulate her food though. Her emgs are good, breathing muscles are good even with having copd. I think they said she has some shoulder weakness……her tounge was the first thing noticed I believe and one doctor put it off because he said mini stroke but xrays showed no.such thing, so after getting another opinion the new doctor sent her to John.Hopkins als clinic, the visit was yesterday. I’m not exactly sure what to expect, I’m scared for her, what am I even to expect in the days, weeks, months, hopefuls years to come?!?
    I know she’s scared, my youngest son is 3 months old, her wish is to see him off to kindergarten or see her first great grandchild born, I never in a million years would expect this in our family 🙁 we now wait for blood results on the gene detection, if its a new one with in her then its possible its passed to my sister, brother and me, I pray to the good Lord above my mom progresses slow and its not passed down.

    1. My Father was diagnosed with Bulbar ALS May 2012. He began having slurred speech spring of 2011, we too thought he was having mini strokes due to heart valve surgery in 2010, but the doctors kept saying no he has not had any strokes. He began falling too around this time a lot more and we could tell something just was not right. By Fall of 2012 he needed a cane to walk and about 3 months later he now needs a walker at all times. His speech now is pretty much not understandable. He writes everything down for the most part. We did just start teaching him to text hoping this will help with communication especially since I live across the country from him. He also has problems swallowing and chokes on food. However is very careful when eating. Probably pretty soon he will need a wheelchair but he is not willing yet. Next thing that the doctors are talking about is a feeding tube, this needs to be done sooner than later, the longer you wait the more risks are involved. My father right now does not want a feeding tube and is unwilling to use anything that might help him.
      I know for me it’s very hard for the unknown because you don’t know how long but you need to plan in advance which is what we have been told. We try to have things in place for him to make life easier. All I want is for him to be comfortable as possible and tell me his wishes.
      Spend as much time with your Mom as possible. Bring your son around a lot. I know for my Dad seeing his Granddaugher always brings a smile to his face. Find an ALS support group they have tons of information and are very helpful.

    2. Mary, its not easy to receive the news of this diagnosis, but you really must take the bull by the horns and make the very best of it. Do anything and everything your mom feels able to do. In my mom’s case she had a feeding tube in almost a year before she was diagnosed and her favorite thing in the world to do was to bake. So although she could no longer eat, she still baked for my dad. WIth bulbar onset her speech and swallowing went first but she was still able to walk around and do her daily things around the house. It wasn’t until the last 3 months that she slowed right down and required a wheel chair and eventually a hospital bed. I guess I could say it was slow moving for a bout a year and then it got very aggressive in the last three months. I also know with my mom as new equipment was introduced i.e. wheel chair, walker etc, it would bring on anxiety because she didn’t want to think that she required such equipment. Just show your loved one lots and lots of love

  38. Hi,
    My mother in law has bulbar onset ALS and was diagnosed 2 1/2 years ago. She has no speech, and cannot suck or chew, she works her tongue around to swallow some foods. She refused a feeding tube. She had a terrible amount of excess saliva that would just flow from her mouth, she now has a bottom lip that needs to be held in place with her hand or it sags down, she told me today that her neck hurts, that it is stiff, and that when laying down she cannot lift her head up off the pillow. I noticed today and last week when I saw her that she has very little saliva anymore, but that her breathing seems to be more labored. She still has use of her hands and communicates with us with a wipe off board, she has told me that she does not know if she has shoes on or not unless she looks at her feet, and that her legs bother her from the knees down lately. She also has a walk that when she walks she tends to sway back and forth. Also when standing she has to hang on to somthing and stand a few minutes before taking off. Any ideas to help her out?? I am concerned because now the lack of saliva and the noiseier (sp) breathing. Thank you so much, Pat

    1. Pat, my sympathies are with you and your family! I’m truly sorry for what your Mom-in-law is going through. It honestly doesn’t get easier with this dreadful disease. Just spend as much time and keep her as comfortable as possible. I lost my Mom to bulbar ALS this past December. She passed away almost to the day of the one year anniversary of her being diagnosed. She had her bottom lip that hung a bit, and towards her end, her neck muscles became weak and she hung her head some. I hated seeing her this way, but miss her so much! God bless.

      1. Thank you for you comment, Yes it is so hard to see my mother in law go through these changes, and be so adamant about not wanting a feeding tube. Do you think that the reason the saliva is letting up and her breathing is getting louder and more raspy that things are changing? Thank You.

        1. It’s likely. As the diaphragm atrophies, it’s harder for her to push mucus out of breathing passages, so she’ll get raspy. The same thing happened with my mom.

          1. I believe the muscles atrophy where the disease takes. If she’s starting to have breathing difficulties/irregularities, then ‘for my Mom’s sake’ this was the last phase before it ultimately took her from us. I wanted facts, not BS, when we were going thru this with my Mom. She was only 54 when she left us. Breathing machines or BiPap were not what she wanted. She did agree to a feeding tube because I was pregnant & she wanted to stay healthy as long as she could. Her last 3 months she depended fully on the feeding tube. But, it was her lungs that failed.

          2. Thanks again for the reply, my husband wonders where does the mucus, saliva go if she is drooling any longer?

          3. Just lost my husband to bulbar onset ALS. It was only a year and 3 weeks from diagnosis to death. So much faster than either of us thought it would be. Your mother-in-law is exhibiting end stage symptoms. I will say that with the help of Hospice I was able to make my husband comfortable here at home. Everyone is different but home was our choice. Hospice is a wonderful organization with more than one option for care. It’s difficult to lose a loved one in any situations but for us, the end while hard to watch was peaceful. I worried about that because I knew that he would eventually not be able to breath and I didnt want him to struggle or be frightened. Hospice promised me that he wouldnt struggle and he didnt. At the end, he was no longer able to take anything by mouth and had lost the ability to use his hands or arms. He could still walk with support but when his Hospice nurse asked if he wanted to be more alert or medicated he nodded his head a bit for medicated. A few months back he had asked her about the end. he was a very brave man to have asked that question and the nurse was reassuring with a truthful answer. Once he chose to be medicated he slept peacefully he passed away 5 days later. Our children and their spouses were with us and that helped to give closure to all of us. My prayers go out to you as you face this. It wont be easy but know tha you can make her very comfortable when she tells you it’s time.

          4. We also had help from Hospice, they were a blessing. My Mom’s drooling diminished towards the end, I thought the meds were finally helping. She started needing us to hit her back to help with lung function, then ended up in hospital with bronchitis. We brought her home with the help of Hospice and she passed a week later. She was diagnosed 12/7/11 and passed 12/5/12 @ 54 years old. I miss her everyday, all day… I am a member of a helpful ALS support group as well. Don’t get on as often as I should. I recommend it! ALSFORUMS.COM

          5. My mom drooled so much, she kept a soft (baby washcloth) inserted in her mouth. We got used to seeing her this way but I remember having to explain it to the hospice nurse when we brought her into hospice on December 25 2012. Then one day about a week after it just stopped. The saliva was not dripping from her mouth anymore. BUT her breathing became very raspy, now whether the saliva settled in her esophagus causing the raspy breathing I’m not sure, but it seems reasonable to think so. They gave her a drug called scopolomine to dry up some of the mucus and this helped the breathing settle as well. My thoughts are very much with you.

          6. Thank you all so much for your comments. We are so fortunate to have found this blog. I am wondering if my mother in law is approaching the final stages. Especially since the drooling has ceased, and when sitting next to her, we can hear the raspy breathing. Amazing she can still walk and use her hands, although the walking is becoming worse. Did any of you experience your loved ones saying that their next tighten and was stiff and difficult to move or lift the head up??
            Again thank you all so much.
            My thoughts and prayers are with all of you as we all go through the daily struggles in trying to make our loved ones comfortable.

          7. Yes I know my mom’s neck was sore. She had a wheelchair with a headrest but towards the end she just wanted to lay in her bed. She always had headaches.

          8. My husband lost the ability to hold his head up several months before his death. It complicated eating and drinking. Like your mom, he was most comfortable in bed or sitting with his head resting back against a chair. Just before he died, I bought a contemporary style leather swivel chair and ottoman. It was small scale and padded but not too soft. With a small pillow for lumbar support he was able to sit for awhile. At the end i fed him in this Chair. He didn’t have as much difficulty swallowing as he was in a more normal position. The drooling stopped near the end. He didn’t have a ratteling sound in his throat but his lungs started to get congested so it was back on antibiotics to prevent another bout with pneumonia . We just kept adjusting things to keep him comfortable. My husband was able to let me know if he was tired, hungry or thirsty right up to the last few days. I asked what he wanted and then did it. He didn’t want to eat or drink much at the end so I stopped pushing food and liquids. I am thinking about you and praying for your family.

  39. Pat – it sounds like my father is not too far away from where your mother-in-law is now. His breathing is more labored, his speech entirely gone and swallowing is almost impossible. All of his foods are pureed or are in shake form. But he is consuming less and less. He is still refusing a feeding tube, despite his doctor’s insistence that it will be very discreet and that it will keep him stronger and take the pressure off daily meals.

    My parents have been referred to a pulmonary specialist to test his breathing since it has decreased 30% over the last 3 months.

    His hands are starting to be affected and are losing strength. Yet he continues to walk, drive and do house work! It amazes me how quickly it progressed w/ speech and swallowing. I worry how long the breathing decline will take and what will be recommended for management, as he will likely decline any saving efforts.

    Anyway, no specific comments or questions, but I wanted to chime in again and say that my prayers go out to all of you.

  40. You know, the more I read of others cases and progressions the less I understand the disease. My wife first presented 16months ago, lost speech 12 months ago, had a PEG fitted 9 months ago, and was completely wheelchair bound before Christmas 2012. Whilst her breathing has been affected, she has been rocking along (albeit trapped in a non-functioning body) for 3-4 months now with little progression. We could still be going in months to come…. Who knows?!

    1. The order and timing of what muscles go next are pretty unpredictable. With my mom, it was mouth, neck, right arm, left arm, diaphragm. She only showed weakness in her legs the last week or so she was alive. She lived 15½ months after she had a PEG tube. As things got worse I think she would have asked us to stop feeding her except she had a grandchild on the way. She wanted to see him before she died. When it looked like mom would go right about the same time Nicholas was due, my sister took emergency maternity leave and flew across the country to stay with mom so that she wouldn’t be hampered by flight restrictions when the baby came. Mom got to see him and hold him. In any case, the last 2½ months we woke up every morning wondering whether that was going to be the last morning with mom.

      What turned out to be the “final countdown” was that even with the PEG, she couldn’t keep food down. It started coming back up, though her muscles couldn’t really force it up and it would go into her lungs. She had one really bad incident of regurgitating food that essentially filled her lungs. She was still “breathing” but her lungs didn’t take much oxygen in anymore, so she slipped out of consciousness. It was about 15 hours after that.

      Obviously, I can’t predict that this is what will always happen with a PEG tube, but it’s something to look out for. The hospice nurses in our county really didn’t know what the possibilities were. They told us that after the aspirating started, it would be pneumonia that took her. They had no idea about lungs just flat out filling up. (As gruesome as it sounds, it was really peaceful actually.)

  41. Hi. I have posted previously regarding my father who was diagnosed with Bulbar ALS in May 2012. my father now can not get around without help, he really needs his wheelchair. He can no longer speak, he writes everything. He has increased difficulty eating and has been loosing weight. He is refusing a feeding tube, which I support his decision. He is eating very small amounts such as veggie soup broth, puréed carrots, spoon of mashed potatoes and spoon of pudding for one meal. He, this past Wed, decided he wanted to go to hospice. We discussed assisted living with him but he choose hospice. Now that he is there he doesn’t think he should be there that he is not sick enough. I feel though that he should stay there, I feel like he is going to continue to worsen. Has anyone else had this experience of parents not wanting feeding tube? At this stage what should I look for. I live across the country from my father.

    1. I am very sorry for you, it must be difficult living far away. I live 5 minutes from my parents and it was extremely difficult. My Mom agreed to the feeding tube. It helps with nutrition and weight loss, but I don’t think it slowed anything down in regards to the muscle wasting and lung function. I lost my Mom in December and it was ultimately her lungs that failed her. I miss her so much, she was only 54….good luck to you & your Dad.

  42. Updat Hi. I have posted previously regarding my father who was diagnosed with Bulbar ALS in May 2012. my father now can not get around without help, he really needs his wheelchair. He can no longer speak, he writes everything. He has increased difficulty eating and has been loosing weight. He is refusing a feeding tube, which I support his decision. He is eating very small amounts such as veggie soup broth, puréed carrots, spoon of mashed potatoes and spoon of pudding for one meal. He, this past Wed, decided he wanted to go to hospice. We discussed assisted living with him but he choose hospice. Now that he is there he doesn’t think he should be there that he is not sick enough. I feel though that he should stay there, I feel like he is going to continue to worsen. Has anyone else had this experience of parents not wanting feeding tube? At this stage what should I look for. I live across the country from my father.

    1. Hi Chris, if he doesn’t get a feeding tube, he won’t have particularly long once he can no longer swallow, and hospice is a good place for him (if he’s comfortable there). The nurses there will be much better equipped to handle end-of-life than at an assisted living place. I’ve dealt with end-of-life for family members both in assisted living and in hospice. Emotionally speaking, it was tough for assisted living caregivers to allow someone to die. For instance, their training was to work really hard to get someone to eat. But when eating is difficult and the patient doesn’t need food to live because they are looking for comfort rather than trying to live longer, pushing food on them is counter-productive. Hospice staff know this sort of thing through training and experience.

      I wouldn’t force him to be in hospice, but all other things being equal, that’s what I’d recommend.

      I can’t tell you what to expect to happen without a feeding tube though, as my mom chose to have one. Hopefully someone else can chime in who has had that experience.

      You are in my thoughts,

  43. I happened upon this website this past weekend and found it incredibly helpful. I want to share our own experience’s so far. We noticed my Mom start slurring her speech in Oct 2012 – seemed to be in the evening’s …first thought she was tired…but it quickly worsened. She went to her GP, then a neurologist, had the CAT scans/MRI etc to rule out stroke…her neurologist diagnosed Bulbar onset ALS just before Christmas 2012. We were referred to the Hospital for Special Care which deals with ALS and our first appointment was Jan. 2013. It’s now end of April 2013, my Mom’s speech is barely understandable, stranger’s do not understand her at all. She uses a Boogie board (Brookstone) which is awesome for her, and recently received an iPad for the text-to-speech tools. The ALS foundation has been incredibly supportive and helpful, and I will be supporting this foundation going forward. She has a lot of problems swallowing, excess saliva, and breathing issues. Her stamina declined rapidly. She has a BiPap, cough assist, and suction machine now (as of March, 2013) which helps. She can still drive and get around – uses a cane for stability and helps with stamina. She remains a positive spiritual person – she turned 78 in March. She was an extremely active healthy person prior to this and it has been difficult for her to learn to slow down but the disease has forced it. She eats because she knows she has to, not because she’s hungry. It’s very difficult for her to eat and there are several things she can no longer eat. She can’t swallow large pills either. She has decided not to do a feeding tube, which I support. We take each day as it comes, but it has been very hard to watch her deteriorate so quickly. In the middle of this, she also has had another melanoma removed, which just throws additional stress into what is going on. We have decided that she will remain in her apartment (62 and over) -it’s gorgeous, it’s 2 bedroom which we now have a spare bed in the 2nd BR when someone needs to stay there, and she’s lived there for 5 yrs ( 5-10 min away from me) and has a great group of friends close by.

  44. Hi, I have posted a few months back on my mother in laws condition with Bulbar ALS, she has started to be very unbalanced and her walk is like a scissor walk, I am so afraid she is going to fall. She cannot talk, eat solids, tries hard to swallow some liquieds, refused a feeding tube, was diagnosed with Bulbar ALS 2 1/2 years ago. Although symptoms started about 6 months before the diagnosis. In the last 2 months she has stopped the excessive saliva and drool, she has to hold her chin up with her hand, writes that from her neck down to about the middle of back doesn’t work right, and she can no longer lift her head from a lying down position. She seems very very tired. I received the following from her this morning, is the end getting closer for her, and should we start staying with her. She refuses to leave her house. Any helpful thoughts are much appreciated. Thank You all ahead of time. Pat below is what she wrote me this morning.

    I woke up about 5 am, on my side in a fetal position. There was a 2 inch band across my back, just below my shoulder blades that would tighten, then the muscle in the back of my neck joined in, both hands, knees, ankles,and lower leg muscles too would cramp so hard my back would arch-then relax-during that time my breathing would be short and fast. It happened about 6-7x before I could slow my breathing and relax my muscles. I could not straighten my legs for awhile or it would trigger another episode.

    1. Hi Pat,

      Were I in your shoes, I would start staying with her. If she’s no longer able to eat solid food and refuses a PEG tube, it means her time is limited. Not to mention that if she falls, she might not have the strength or coordination to get back up. I can’t tell you how long she’s got because ALS is not predictable. But from my own experience, I think it’s better to start spending time with someone before it’s absolutely necessary. I wouldn’t want to err on the side of spending too little time with a loved one who is in the later stages of ALS.

      Yours, Phil.

  45. Having read every single post here, I feel that I am better informed of the future and what it holds.
    My father was diagnosed sept 2012 after slurred speech started nearly a year before. He has now lost speech, has a PEG fitted and is very frail compared to the robust, warm man he once was. Although he did not want to make a public speech at my wedding for fear of everyone thinking he was drunk, I was lucky enough to have walked up the aisle with him and have that memory and video to watch and keep forever.
    We also managed a family holiday in February 2013 which was truly difficult for dad. He had lost speech completely by then. He was really struggling with food too and by the time we got home he was straight into hospital for the PEG to be fitted. This was scheduled but couldn’t have come at a better time as he was then so dehydrated. The saline drip helped to restore his happiness as he felt do much better for being rehydrated.
    He has used the iPad for a long time and as I live far away it has been wonderful to read his words and ‘hear’ his voice come through, reminding me of the man he still is inside. He is so positive and although my childhood bedroom is now ‘ward 1’ as he refers to it, he seems happy, if tired.
    My mum is a strong hardworking woman but losing your husband and best friend after a lifetime together will be too much for her to bear alone. Thankfully she has wonderful friends and us kids, her eldest being a saint as well as providing the only grandchild, which also lightens up dads life.
    The mind inevitably wanders to the end and whilst it is distressing and unimaginable it is good to be prepared. I have been in denial for some time thinking that dad would get better, even a little or it would stop and we would remain… Of course I knew this was an impossibility but that is why it is called denial.
    I have and will always be a daddy’s girl.

    1. Hi JC, if you have any recordings (video or audio) of your father, hang on to them. My mom had a Dynavox speech device (this was pre-iPad days) that she used. After listening to her talk through that for a year and three months, I could no longer hear her actual voice in my head. I thought the memory of her voice was gone until I called my dad one day and he didn’t pick up. He hadn’t changed his voice mail recording and it was my mom’s voice. I really needed it and I can now “hear” her voice in my memories. I don’t like to give prescriptive advice about ALS, but keep those recordings (if you have them) handy just in case.

  46. My moms first symptom started of slurred speech and a deviated tounge 3 years ago, nothing has really worsen, slow progression .or maybe misdiagnosed?! She does have trouble eating and all that, three months ago her emg was good….the muscle test….thoughts. is bulbar ever misdiagnosed?

    1. ALS progression is really unpredictable. If you are worried that she might not have ALS, ask the doctors or perhaps talk to the ALS Association. They’ll know the differences between ALS and the few similar conditions.

      1. My mom started out with slurred speech and trouble swallowing, she remained that way for about 2 years before the swallowing got so bad and she was not receiving proper nutrition. We took her to ER as suggested by her speech pathologist and the neurologist suspected ALS. They did an EMG and an MRI and both came back negative. She was placed on a feeding tube right away. A few months later she had another EMG,and again it was negative. 6 months later another EMG came back negative but because everything else was ruled out a neurologist specializing in ALS diagnosed it as ALS. My mom lasted 17 months from the date of diagnosis and passed away this past January.

  47. Hi,
    My mother in law has bulbar ALS, she is now on hospice care. She is 5’10” and down to 110 lbs. She has been doing protein shakes once a day, and still trying to eat solids with a lot of choking. She is starting to rapidly lose the ability to walk and we notice her hands are getting weaker. Her mobility has gone downhill in just 3 weeks. We have urged her to use a walker and hospice insist she use it. She also has decided to get a feeding tube. She refused this when the specialist suggested it 3 years ago. She used to drool excessilvey and that has diminished also over the last 3 or 4 months, but my question is, she has developed a noise when breathing and a terrible terrible smell when breathing, others who visit are even noticing this…does anyone else have experience with their loved ones developing this smell, should we be concerned??
    Thank You all

    1. Hi Pat, I am sorry for your MIL and you and your family. My Mom passed away this past December, almost a year after being diagnosed with Bulbar ALS. She also had a feeding tube and it really helped. We were able to feed her and give her water and meds through the tube, she was totally dependent on it for her last 3 months of life. Yes she had horrible breath and the noise when she would breath would come and go, but it was either phlegm or just spit that she was not able to clear her throat and swallow. I’d be clearing my throat when I’d hear it and felt horrible for her. And the bad breath is due to not enough saliva to keep the bad bacteria away and the muscles in the mouth deteriorating. She’d brush her teeth 3 times a day and still have it. We did use a suction in her mouth to help since she was not able to swallow without choking. ALS is the most horrible disease. God bless. Patricia

  48. Well, after a 20 month battle, my wife Kat died July 16th. Her bulbar onset ALS progressed rapidly until about Dec/Jan this year when she was left unable to move, not even her hand to type, with her speech and eating long gone. She was literally trapped in a non functioning body for 6months. Hell on earth. Eventually her breathing became shallower and with careful use of meds on offer we gave her the peaceful death at home she wanted. Surrounded by family and friends and with music blaring she just gradually stopped.

    ALS is a prick of a disease, and especially so when taking an otherwise healthy and vital person. Would I do anything differently? Perhaps I would have pushed to do more early on. The rate of progression seemed sometimes hard to fathom, and I had to adapt on a daily basis. I am thankful for my size and strength that allowed me to lift and move Kat as and when I needed to, and to get out and about without a team of helpers. I hope to be able to offer myself to others going through this as a ‘portable crane’.

    Good luck to all of you going through the ALS journey. Somewhat poignantly, the song playing as Kat took her last couple of breaths was Get Free…

    Signing off.


    1. Rowan, I am very sorry for your loss. And this is the right place to let it all out because as you say ALS is a ‘prick’ of a disease. BUT the only persons that know that are the people living it…the patient, and their caregivers. It is truly a monster. My mom died in January after her battle with bulbar onset ALS. And she too was a prisoner trapped in her body, where her mind was fully functional. I too, feel better about coming to a place where I can offer support to others going through this.

      1. Rowan, I am so sorry to hear of the loss of your wife. I, too, am a caretaker. My Mom was diagnosed in Dec. 2012 with Bulbar onset ALS, she could no longer speak as of March, and struggles with liquid nutrition at this point. She is not doing a PEG tube, so she is losing weight on a regular basis. It’s absolutely horrible to watch her deteriorate. She is still able to get around using a walker at the present time, but she is clearly getting weaker. I can only imagine the impact of her loss to you. May you have peace knowing she is no longer suffering. This disease is a horrible monster, which takes every last dignity from our loved ones.

  49. My mom has been passed now for 15 months. It isn’t getting any easier. Moms symptoms started in January of 2012. She seemed winded and tired easily. Also was having a hard time holding her head up right. Her family doctor totally missed diagnosing properly. Ugh. Gave her antidepressant and muscle relaxers. Went back to the doctor March of 2012. Mom was losing weight and speech was slurred and was drooling. Mom looked good though. She was a beautiful woman. Doctor finally order a cat scan. Cat scan showed nothing. Doctor diagnosed her with arthritis and depression. Ordered some physical therapy and sent her to a chiropractor for her back/neck. Mom became clumsy was stumbling more. July 2012 she fell going into house. Had a large goose egg on head. Refused to go to emergency. Things just declined more and more. Physical therapy was coming to her home. Mid July 2012 her physical therapist suggested she go to Emergency. Her O2 stats were 82. She went. They kept her all night. Next day she was on life support. Ended up on life support because she was retaining CO2. A neurologist did several tests on her and diagnosed her with the bulbar als 🙁
    Mom did get off ventilator and was discharged on hospice. I drove her home. Took care of her. She passed 3 weeks later in the night. She was on no meds. She was using a bi pap. Do I think it looked peaceful? Absolutely not 🙁
    As for her family doctor what a quack. Sickens me. My poor beautiful mom gone at only 68 years of age. 8 months of symptoms until death.

  50. My wife has been having trouble talking and swallowing. It started about 1 year ago, was just diagnosed one week ago. Seems everything I read on ALS onset bulbar, the patient only has 6 months to 18 months, which sucks because her symptoms started a year ago. I’m scared to death that she might only have about 6 months. I’m very glad I found this sight, gives me even more understanding following other patients. Don’t know if it is related, but she has had cancer three times over the last ten years, now this, I’m just in fog.

    1. Mike Couto,
      I’m very sorry to hear what your wife is going through and you. It is such a devastating disease. There is no definite way to tell how long she has left, just try to make her as comfortable as possible and be there for her as much as possible! My Mom was diagnosed with Bulbar ALS and passed away almost exactly one year later. In fact, on 12/5/13, it will be a year since I sat by her bedside and watched her breathe her last breath. She was 54 years of age and loved by so many! I can only hope to touch people the way she did, full of love and laughter. Her symptoms really began several months before she was diagnosed, and she agreed to have a PEG tube (feeding tube) which really helped her be here with us for her final 3 months or so. I was 8 months pregnant with my 3rd boy, her grandson, when she had the tube surgically inserted, so glad she did, because she was able to maintain her body weight and vitamins when she had choking spells. Ultimately she got sick, bronchitis, and did not have the muscle strength to cough or swallow. Within a week and a half, after bringing in the help of our local hospice, she left us, ME…..her only daughter (I have a brother also, very close)….ohhhh, I miss her daily, and think of her sooo often. But, I am glad I spent a lot of time with her, prior to diagnoses we were close and after I was there for her more than I mentally thought possible. I fed her via her PEG everyday during my lunch break from work and after, washed and fixed her hair, took her places, got her nails done, I’m so thankful! I still have a hard time believing she is no longer here, that I cannot pick the phone up and have a normal conversation with her. But one day I will see her again, that is my faith and gets me through….Bless you. Also, I frequently visited ALSFORUMS.COM. Had some help with that site. Bulbar ALS is very uncommon. And my Mom had that along with frontotemporal dementia, even more uncommon, but she didn’t have normal fear of things or lacked decision making abilities towards the later stage. I think it was better because when I asked her ‘Mom, are you ok? Are you afraid?’ She looked me dead set in the eyes and said ‘NO.’ I knew her eyes, talked with them many of times, lol. A child always can look at their parents eyes and tell how they feel. Don’t hesitate to ask for help or just someone to talk to….

      1. Thank you for the insight, I’m sorry about your mom. My wife is 61 next month, Xmas eve. Once again thank you, and merry Xmas to you and your family.

    2. Mike, I am sorry to hear of your wife’s diagnosis. It is not an easy one to receive. My father was diagnosed with bulbar onset ALS August 2012, although symptoms started in early 2012. There are things, depending on her progression and if she is willing, to extend quality of life a bit. Most notably, getting a PEG or some type of feeding tube for when swallowing ceases to function. And doing regular exercises to keep her limbs active is essential. In my father’s case, it appears as if the disease moves faster the more inactive he is. If you can travel, do it. Be aggressive in making memories and taking control where you can. Your local ALSA may be a good resource and they may be able to put you in touch with other bulbar onset families. Sometimes it helps just knowing there are others out there going through the same thing.

      My prayers are with you and your wife, as they remain with everyone on this list.

      1. Thank you for your input, I’m trying to figure out where I can take her for some more memories.

  51. My father (diag. 8/2012) was recently put on in-home hospice care. He cannot take anything by mouth and has had a PEG tube for months. Mobility just decreased within the last 2 weeks with left leg weakness. The symptoms giving him the most trouble are 1) shortness of breath and 2) heavy mucus in the back of his throat causing choking. He takes different combinations of robinul and scopolamine that thickens his saliva, but it is getting so thick and catching in the back of his throat. Has anyone tried hycosamine? I worry that it will make things too thick and create more of a choking hazard.

    Can anyone shed light on what comfort care medicines relieved these symptoms the best? What medicines have your loved ones received at end stage care? We obviously would await instruction from the hospice care team, but I’m curious what, if anything, has worked for others.

    Many thanks and prayers for everyone here.

    1. My Mom passed from bulbar onset Dec 12, 2013 –
      KRS – for comfort she was on morphine dosage started at 5 mg I think and was increased as needed as she progressed. She was also on scopolamine patches (2 seemed to work) along with drops of atropine, and also used Lorazapan….she did not do a PEG tube – she didn’t want one – she saw no need to extend this ugly disease. My Mom started with slurred speech in Oct 2012…was diagnosed Dec 2012, and passed a year later. She decided to stop eating Nov 26th as it was too difficult to swallow and too exhausting. She passed VERY peacefully. I miss her with every beat of my heart. I was able to keep my Mom at home with hospice care – they were incredibly helpful and worked tirelessly to keep her comfortable which she was.

    2. My Mom had ALS Bulbar onset, she did not take hycosamine, I am not aware of side effects. We used a suction machine and the scopolamine patches and atropine drops to help, she also wanted us to hit her on her back to help get the mucous out of her airway. We started small doses of morphine and lorazepam to make her less anxious, this was with the help of hospice. She’s been gone for over a year now, I miss her so much. God bless you all.

  52. I was just diagnosed with ALS Bulbar onset. I have dysarthria and dyphagia and have a weak neck, and arms. My son feeds me and I am still trying to eat what is cooked. I am trying to find an ALS support group in my area (West Central Florida) before I get to weak to drive

  53. I am Sandy Colemans daughter from the above ^^^ comments. Mom just wanted you to know we are out here reading the same posts. 🙂
    Love you!!

  54. I was diagnosed with ALS in Apr2014 told I had 6-9 mo to live,what a quack of a neorologist,never went back to him. Went to the big city for 2nd opinion same thig ALS with cervical radicuapothy, along with fibromyalgia, and scoliosis.Now they tested me and this that the other,already slurring,and drooling,lost over 40 lbs home trying to fiquire this out.facing the fact I had a terminal illness @57was a big thing,to date I’ve lost 64 pds and live in a nursing home. and from all the books and info my local hospital gave me I had determined I have Bulpar ALS,I’ve lost my ability to speak, I use an I pad,lost use of both hands,loss control of bladder, almost lost my mind, I have 4bros &sis buzzy with their own lives,I am a single mom,4grandchildern,and sure wish I could find an answer to how long I have left in this crazy circle called life.i still set in wonder why me, how long

    1. No one can tell you, my wife was diagnosed in October of 2013, with bulbar onset, she was gone by February of 2014. She had the symptoms for a year before she was diagnosed. Pneumonia is what finally got her. I wish you the best, hope it won’t be long. Keep the faith.

    2. As Mike wrote, no one is really going to be able to say with any degree of certainty. However, from your description your condition is fairly advanced. You are at the point my mother was only a few months before she died. But there’s no way to tell if the speed ALS is progressing for you is along the same timeline as other patients.

      1. My father was finally diagnosed with Bulbar ALS in May 2012 and passed away May 2013. He did not have a feeding tube. He lived at home until April 2013 and them to Hospice. He was there aprox 1 month. I lived across the country and was with him when he decided to go to hospice. He seemed to be doing good the staff was wonderful so I went home for maybe a few weeks. I recd a call a few days after I got home that things had changed and I needed to come back. I returned and he passed away the next day. I’m so happy that I was able to get back to spend those final hours with him.
        I pray for the best for you. There is no way to tell the time but make try to spend as much time with loved ones as you can.

  55. Hello, my mum was diagnosed with ALS in July. She has been losing weight and her voice for over a year. Her primary care doc just kept telling her to eat. Finally, they sent her to a specialist which told her she must have had a stroke and that her vocal cord was paralyzed. It was about a year or so before she was so weak we took her to the ER. The first time, the doc sent her home told her to eat. The next week she was back in the ER with a new doc that admitted her. She was at that point 70 lbs. After several tests and a week in the hospital she was giving her diagnoses. They put in a feeding tube so she can get her nutrition. She is unable to eat by mouth, has a very difficult time speaking and can’t swallow her saliva. This past week she was again taken to the hospital due to breathing difficulties. They have given her a bipap machine, a nebulizer and a suction machine. I believe they are also bringing her a cough assist machine. She does not want to be on a ventilator that is invasive. The doc said that her disease is progressing very quickly and that she has months left. He is hoping several months, but months none the less. I am praying that she is still her for Christmas, but it seems she is getting worse by the say. Has anyone had a similar situation? I am trying to prepare myself, but more so, I want to make sure she is comfortable. Any thoughts would be very nice.

    1. My wife was diagnosed with ALS of the bulbar, she was diagnosed in Oct of 2013, and passed in February 2014. She ended up with pneumonia, just didn’t have the strength to carry on. Even tho it went fast, was better than 3-5 years. Wish you the best, hang in there. It’s a terrible disease. Mike

      1. Mike,

        Thank you for the information. I am so very sorry about your wife. I hope she was not in any pain. So far my mum is pain free. I see her struggling and I just want to take it all away. I am sure you can relate. I wish you all the best, Sandra

        1. Sandra, my mom’s experience, and that of the people I met, was not that she had much pain. However, she was uncomfortable a lot of the time. When she had an itch, she couldn’t scratch it. When the saliva pooled in her mouth, she couldn’t swallow it away. When her arm was in an uncomfortable position, she couldn’t move it or stretch it. All these things and more had to be done by other people for her.

          I can’t say every ALS sufferer is pain free but the ones I saw were. Even if they aren’t though, what I saw was a lot of discomfort.

    2. Enjoy every moment. Hug and kiss her as let her know you love her. If you are able be with her 24/7. ALS is a dirty bitch. Moms was aggressive as well.

      1. I appreciate the feedback. She said that her neck feels weird now and she is getting weaker in general. My prayer is that she will make it to the New Year, but I am not sure that is going to happen. If I may ask how long your families lasted once they were at this point. I have researched as much as I can find and everything says the same thing. It is different for everyone, but it seems to me that it is more similar than people think. It just seems that my mum is going down hill so quickly. My father died 12 years ago from multiple myeloma. I was able to research his disease and follow his progress every step of the way. Although it didn’t change the inevitable, it sure helped know what to expect next.

        My thoughts are with you all,

        1. My mom’s timeline was: slurred speech in December 2006, diagnosis in Mar 2007, complete loss of speech and ability to eat Jun 2007 (she had a PEG tube put in at that time), neck brace 100% of the time Nov 2007, right hand Jan 2008, left hand Apr 2008, breathing got progressively worse from May 2008 until she died in October. If she hadn’t put in a PEG tube in June she wouldn’t have made it very long at all. I would not take this as typical at all, as every patient is different. But bulbar onset tends to be a lot more aggressive than other forms of ALS and this kind of progression certainly could happen.

          My mom didn’t have multiple things atrophy at the same time, but it can happen. That fact that your mom has breathing difficulties at this point means that the progression of atrophy in her diaphragm could have started. Even on a PEG tube, my mom lost weight every month. If your mom is starting from 70 lbs it’s going to be very hard for her to maintain weight and could be a factor in her difficulty breathing.

          I can’t say (no one really can) how quickly it will progress for any one person. But my experience is to assume the worst and spend time with your loved ones sooner rather than later.

          My thoughts are with you, your family, and especially your mom.

          1. Thank you for allowing me to understand your mothers time line. I am praying that my mum is able to hold on for a long long time. Unfortunately, I can see her deteriorating almost daily. Thank goodness she is not in pain. I will let you know how she is doing.

            Thank you again for sharing,

  56. My husband was diagnosed with bulbar onset all the way back in February, 2012. He actually started with slurred speech and yawning in summer of 2011. He lost speech in 2012, stopped eating in 2013 (uses a PEG tube). He gets Botox shots monthly to control saliva and uses a cough assist and suction machine. He’s also on bi-Pap about two hours a day. And uses a neck brace for mowing the lawn and long distance driving. He is an amazing fighter! Even though he has a frozen left shoulder and diminished strength in his arms, he still GOLFS! And in the 80s at that! His friends, doctors and nurses are amazed. He is my hero!

  57. I am from U.S.A, I was diagnosed of ALS disease (Lou Gehrig’s disease) in 2011 and I have tried all I can to get cured but all to no avail, my life was gradually coming to an end, until i saw a post in a health forum about a herbal doctor from Africa call DR Isaac who prepares herbal cure to cure ALS/ and all kind of diseases including HIV, MND, Epilepsy, Leukemia, Asthma, Cancer, Gonorrhea etc, at first i doubted if it was real but decided to give it a try, when i contact this herbal doctor via his email, he prepared an ALS herbal portion and sent it to me via courier service, when i received this herbal portion, he gave me step by step instructions on how to apply it, when i applied it as instructed, i was cured of this deadly disease within 7 days, I could not walk or talk understandably before but after i took the herbal cure as he instructed i regained strength in my bones and i could talk properly unlike before, I am now free from the deadly disease, all thanks to Dr Isaac. Contact this great herbal doctor via his email <email deleted> or you can call his cell phone on <phone number deleted>

    1. I don’t normally leave spam comments up, but in this case I’m leaving a modified version. Readers, the commenter uses the name jessica visibly, but left an email address that has the name Georgina and a scam email for getting these herbal supplements with yet another name. Currently there is no cure for ALS, much less some quack supplements. Please don’t be taken by the scams. ALS sucks, but it sucks even more if you’ve spent money on a charlatan who leads you on with respect to your chances.

      In any case, if folks really want to seek out quackery, they can do so. That’s your choice, as ill-advised as it is. But I won’t allow it to be spread on my web site.

      1. Thank you for this message. My mother passed 9 months ago from bulbar onset ALS. In uncharacteristic desperation she would search the Internet for a cure. There were horrible horrible people that would say they had the cure and for 10,000 along with a trip to another country they could heal her. As her caregiver I refused to take part in these shenanigans and my husband and partner caregiver wrote the scammer and told him to never contact our mother again. We gave the scammers contact info to the ALS Assocoation also. This blood sucker had the nerve to write us back and tell us we were horrible children for refusing to save our mother. My mother also felt we had signed her death warrant by not making this trip of false hope and empty promises.I miss my mom so much. I do not miss ALS in our lives at all.

  58. My brother diagnosed in February 2014 at 59 yrs of age. Bulbar onset approx. 4 years ago, no diagnosis as medical doctors could not find any acute symtomtology. Now unable to speak, eat, but still has use of limbs. Has some disordered thinking and difficulty with the saliva issues. Two weeks ago had radiation to the sliva glands and will have once more radiation session in two months. botox not a option for him as his breathing nerves are compromised and could be further damaged. Radiation is said to be 80% effect and we do see that the saliva production has reduced somewhat but difficult to measure as his responses to our inquiries are sometimes confusing. We do see that he does not use the cloths in his mouth 24 hours a day as he did prior to the radiation. Fingers crossed for the next round of radiation. On a related note, he had to have all of his teeth removed to be able to do the radiation as it would have damaged his teeth making it necessary to remove them after treatment. does anyone else know about the results of radiation treatment for the mucous production and, have you see any positive results? It is a horrible disease and as sibling trying to do the best for him, it has been quite stressful yet, he is still with us so, me and my sister do what we can to make his life a little brighter. Kind regards to all of you supporting a loved one.

  59. Hi,
    Haven’t seen a post on here in a while. Does anyone still post? For once I felt as if I weren’t alone. I’m 50 y.o. I was diagnosed with Bulbar Onset on February 3rd of this year. This is the first site that I’ve seen where people actually talk about what I might expect. Right now I’m dealing with slurred speech, drooling, and some choking each time I swallow. Also, I catch myself holding food and liquids in my mouth as if I’ve forgotten to swallow. I’ve no symptoms in my limbs, as of yet, other than some severe cramping in my hands and feet every once in a while. My doctor gave me Rilutek on the day I was diagnosed, but I don’t know if I want to take something to prolong this horrible thing. I’m pretty much alone in this… no family, am widowed, recently moved, so I know no one where I live. Now, I felt like I had found a place where people are dealing with the same things and there hasn’t been a post in months. Is anyone still here?

    1. Hi,

      There are a number of people who are subscribed to the comments on this post, so they will see yours, and I am guessing that there will be a comment or two in response. I am still amazed that the comments section of this post has turned into an informal place for people to talk. There are a few new comments since November, but they show up as replies to other comments so they don’t appear at the bottom. I can’t speak for how much the other people subscribed are paying attention any more (some probably cannot), but I receive every comment and try to comment or write privately.

      My mom chose not to take Rilutek, so it’s hard for me to even talk about whether it’s a good choice. In one respect, I’m glad she didn’t because some of the later months of time she did have were not pleasant for her or us. If that’s the time that got prolonged, she would have been miserable. On the other hand, her second grandson was born about a month before she died. A few more months of her joy at holding him would have been amazing.

      All that said, it was only her last 3 months that were truly unpleasant for her. Before that, ALS merely made things in her life inconvenient. She could still cheat at cards, for instance. And took much joy in that. It was not bad for her until her arms were completely unusable and her legs were weakening. Even then, she still enjoyed visiting with people after we set up her Dynavox to work with a giant mouse that she used with her feet.

      Have you been in contact with the ALS Association? At least here in Western Washington, they were able to help with support well beyond doctors. They made it so we weren’t alone.


      1. Thank you so much for responding so swiftly, Phil. I appreciate that and the fact that you’ve kept up with this so diligently after your loss. Please allow me to offer my condolences, even if a bit late. Thank you also for your candor throughout this. I’ve read the majority of the posts here. I could never have imagined so many people were afflicted with this. Yes, I am currently in touch with the ALSA and the MDA. Things are moving a bit slowly, but that’s my fault. It has taken me some time to even grasp that I have this. Denial… a stage, right? Anyway, I’m grateful that you are still here. I hope it’s not too painful for you to deal with this over and over again. Again, thank you for answering each of our questions so honestly. That is a rare and wonderful thing that we need and get not often enough.

    2. My wife was diagnosed with the same Bulbar being affected. She had symptoms for a year, when they finally diagnosed it as ALS. She passed 3 months later. She ended up with pneumonia. In my opinion, you have the best ALS to have shortest time span. I also agree you don’t want to drag it out. I wish you the best of luck on yout journey. Check with an ALS support team, great help.

      1. Mike C,
        I’m so sorry for your loss. I know it’s not much of a choice when you boil down to it, but you’re so very right. If one has to have ALS, best to have the quickest acting one and have it over with. (I’m sorry if that’s painful to other’s whose loved ones are diagnosed. I’m speaking solely from my own perspective. I just have no desire for this to be some long drawn out thing. I have places to go.) Thank you for the good wishes.

        1. Hi,

          I would agree with Mike. Bulbar ALS seems to run through you faster and is arguably more merciful. I lost my young wife to that form and we were continually surprised by how quickly we lost the ability to do things. My advice is do as much as you can now, pay to do the frivolous things you could never justify financially, and generally just immerse yourself in what ever it is that makes you happy.

          Good luck, my thoughts are with you.


          1. Hi Rowan,
            Thank you for your response. “I’m sorry for your loss” doesn’t seem quite enough when losing a young lady with whom you chose to be with forever, but I truly am.
            All very good advice, so, thank you for that, as well.
            Would you or anyone here, have advice on support systems (moral support) other than the ALSA or MDA? I know Ms. Ryan commented that I might move to where I’d have support, but having no family or close ties anywhere, that really is not an option for me. I have my golden retriever, Max, and that is the extent of my support. I’d appreciate any suggestions y’all might have.

            My thoughts are with you, as well, Rowan. Thank you again for responding.

          2. My husband passed from Bulbar Onset ALS. It is definitely a kinder form………he was able to walk (shuffle) and remain fairly independent until the very end. His arms were weak so I helped him with dressing a little, and he drove up to two months before he passed. He lost the ability to talk (used an iPad) and eat very early on (feeding tube). He even took care of his own feedings until he went in the hospital with aspiration pneumonia, which is what killed him. If your PALS is as fortunate as mine, support other than ALSA or MDA may not be necessary. We did seek home health care at the end but never got to take advantage of it, and we were going to resort to Hospice care if necessary, but didn’t get that far either. But that is what I would suggest. So sorry you have to go through this, it is a journey I would not wish on my worst enemy!

    3. I just recently found this blog. I have yet to be able to read ALL the comments as it starts getting to me after a few. My dad was diagnosed with PB ALS in January of last year. A year before that, he was misdiagnosed as being a stroke patient after having slurred speech. By the time he was diagnosed, he could no longer form any words. In a year’s time he went from sounding like he had been drinking a little, to not being able to speak at all. We talked him into getting a PEG tube last year and it is a good thing we did as he is no longer able to eat anything by mouth. He has had a hard time with saliva since the reflex to swallow no longer works. There are some patches he uses that helps reduce the amount he produces. He has just recently been experiencing some weakness in his limbs. His right leg and left arm are the weakest at this point, but he is choosing to use a cane for now. His lungs are functioning at 50%. He is taking it better than the rest of us I think. Or at least that’s the mask he wears. I often wonder how he must really feel. It is a very lonely feeling to go through all of this. This blog helps me not to feel so alone in everything.
      I have done a LOT of research on ALS since my dad’s diagnosis. They don’t know the cause of ALS. Only 5-10% of the time it is hereditary, but you are twice as likely to develop it if you are a veteran. Because of this, it is considered 100% VA disability. My dad is a vet and the VA has been a Godsend! I don’t know what we would do without them! Just out of curiosity, are you a vet?
      I hate to hear that you, or any other human being for that matter, are having to deal with this horrible disease. I hope you have more good days than bad. I would suggest moving closer to someone who can help you out when you are no longer able to do things for yourself. My dad has started a blog and that has seemed to help him. You can find it at http://byroncrownover.blogspot.com/ if you want to read any of it. I wish you the best of luck! <3

      1. Ms. Ryan,
        I’m so sorry you have had to find this place as the rest of us have. First, thank you for sharing the link to your father’s blog, I will check it out. I think the thing that bothers me most in trying to research this, this horrible thing is that there is so much information about limb onset ALS and not a whole lot about Bulbar. At least not honest, what-to-expect, information. Finding Phil’s blog has been a true God-send for me. I’m not one to want things sugar coated and here they are not.
        I, like your Dad, have saliva issues as well as drooling problems. My doc prescribed me Robinul for it. It dries things up, but dries *everything* and gave me nose bleeds, so that was a bust for me. Have heard others say it worked okay for them.
        I am not a Vet. I did join the Coast Guard when I was 18, but I had medical problems and was given an honorable discharge right after boot camp.
        I think your Dad is probably showing you how he really feels about this. He’s had some time to consider and come to terms with it. I don’t know, I could be mistaken, but it’s much easier for those of us who have it to deal, than the loved ones. Not at first, maybe, but in time. We sort of make our peace. I hope that helps you in some way. I lost both my parents to colon cancer. My mother in ’95 and my father 4 years ago. I know for them it seemed easier accepting it than it was for me, especially as an only child. I was devastated. Their biggest worry was that they were leaving me behind alone. Anyway, I digress, sorry. The best advice I can give you, having lost my parents, is to spend as much time with your Dad as you can. Leave nothing unsaid. Watch things that make you laugh. Listen to music together that you both love. Make new memories together that you can cherish. You’ll both be so much better for it. I’ll visit your father’s blog soon.
        As sorry as I am that you have to be here, I’m glad we both found this place. It does help. (Thanks Phil!)

        1. Your words do help… Thank you for that! I always knew that I would lose him one day, but I never expected to be losing him at my age. I am only in my 30’s and have two daughters that adore him. Like I tell people though, no matter if it is tomorrow, or 20 years from now, I would never be ready… I do pretty good most days and have been told many times by my family that I am “the rock” of the family. I do have my days though. It was a year ago today that he had his feeding tube put in. I am thankful we were able to talk him into that because he does not want any form of life support. I have no doubt in my mind that he would be gone by now if he hadn’t.
          We do try to make as many memories as we can. When my parents sat me and my sisters down and told us, my sister looks up at me after crying for a while and asked “What do we do now?” I told her that we make the best of the time we have left… We try to make the best memories we can and spend time together… That’s all we can do. We finally got my parents moved back in the town I live in. It has been a blessing.
          We have a support group in Little Rock, AR called ALS in Wonderland. They are awesome! I am not sure about what support groups are in your area, but surly they have at least one. The ALS Clinic that my dad goes to told us about them as well as other resources. I don’t know how they do it where you live or if they have ALS clinics, but if not, your Neurologist should be able to give you a list of resources.
          I hate this horrible thing they call ALS… I too hate that you have to be here… I hate even worse that you have to live with it, but am glad we have had the chance to talk. Sorry it took so long to reply.

  60. Hi. My mom has ALS at 56 years old. She is in a nursing home . She can’t talk at all, eat , drink. She can’t move any part of her body but has her mind 100% . She does cry a lot . Any suggestions on what I can get or do for her to communicate some how?

    1. Hi Melissa,

      My mother kept the use of her feet until the day she died. So I bought a large trackball that we connected to her speech device. She moved the cursor around on the device with her foot. It was slow and cumbersome, but she could communicate.

      I started looking into eye tracking technology, but we did not need it. I suspect it has gotten a lot better since mom died in 2008. Basically, it can see what someone is looking at and allows someone to control a device by looking at things. I don’t have any idea how well those work now, nor what they cost.

      There are also sip-n-puff systems that let people communicate by breathing in a tube.

      Case workers with the ALS Association and staff with ALS clinics (I don’t know where the one nearest to you is), will know much more about the current state of these technologies and their availability. I highly suggest getting in touch with a specialist if you aren’t already. Because ALS is so rare, many doctors and nursing homes don’t have information on the latest technology.

      Someone may also pop up in the comments who has experience with these kinds of systems, so you may want to check back here.

      (Note, you left your comment as a reply to someone else’s comment in the middle of the page. I moved it on the page so other people can see it better. I’m hoping that will allow someone who has used some of the more advanced assistive technologies to see it and reply.)


  61. Thank you everyone for sharing your stories here, I have found some comfort in reading them, knowing my family and I are not alone in this struggle. My mom has recently (may 2016) been diagnosed with “probable ALS.” Only her speech and swallowing is affected at this point. The slurred speech started in January/February, progressed slowly and remained stable for several months, then last night I spoke with her on the phone and couldn’t understand a word she said. I had just visited with her on Sunday and could understand her fine and it’s hard to believe it could get so much worse in just a few short days. Perhaps she was just tired, and it usually sounds worse on the phone. I don’t know. I’m just feeling very heart broken right now. My dad has to translate for her.

    She still needs to get a second opinion, so we are waiting on the doctor to set an appointment for that. I still have some optimism but my dad is in total denial. She’s gone through all the usual tests which came back negative and ruled out other potential causes so far. I am trying to prepare for what lies ahead, but the whole thing is just difficult and shitty, as I’m sure you all know.

    She is my best friend and a true angel. I love her so much. I don’t want her to suffer. I don’t want my dad to feel sad and scared. My heart just aches for them. We have no other family to help and I need to be the strong one but it’s going to be so hard. I’m trying to plan as many fun events with them as possible while she is still mobile. They live 3 hours away but we’ve been visiting almost every weekend this summer. Trying to make the best of our time together!

    Thank you for providing a space for me to vent and find comfort. At least we’re all in this together.

    1. Lisa, I’m so incredibly sorry to read this. I do know what you are going through…my Mom started the same way. Know there are a LOT of resources out there for you…make sure you get in touch with your local ALS chapter. Feel free to reach out to me if you would like.

      1. Thank you Linda. I’m so sorry to hear your mom & family are dealing with this as well. The new neurologist is at an ALS clinic right near where I live so I will be taking full advantage of all the resources there when the times comes, thank you so much!

    2. Lisa,
      I read this with tears in my eyes. Your story is almost identical to mine, only it is with my dad instead of mom. My heart breaks for your family. I know all too well the struggles your family is facing and will face in the future. My dad was diagnosed in January of 2015, a year after onset. He ordered his wheelchair this week. He is now seeing hospice. I find myself struggling even more as his disease draws closer to the end. I know how alone you may feel. It is hard to talk to loved ones about how you feel because you don’t want them to hurt. This blog has been a blessing to me. It really kills me to see more people suffering with this terrible disease. I try to keep the faith that ONE DAY THERE WILL BE A CURE!!!! Until then, I will continue to educate those around me! I wish you and your family well.

      1. I’m so incredibly sorry to hear about you and your family as well. Sending you hugs and so much love. Thank you for taking the time to reach out to me! I know it’s so hard to talk about it, but it can also be helpful. Some days I just can’t believe this is even happening. You’re right, one day there WILL be a cure. I will try to do the same, educate others about this. I also find it helpful to learn as much as I can about the disease, so I can prepare for what lies ahead and also so I can be the rock my parents will need. I’m terrified I won’t be strong or level headed enough to get through this whole thing 🙁

        Thank you again, all the best to you and yours as well.

        1. Lisa,
          I am sorry it took so long to reply to this. We all have those fears. We are human. You will have your moments of weakness, and that’s ok. You can’t be strong 100% of the time. Allow yourself moments to be weak, or it will come out in the worst ways at the worst times. It is absolutely ok to be sad and depressed. You just can’t STAY that way. On October 10th, my dad went in to the hospital. He was in and out until he was freed from ALS on November 12th. So much went on in that month. I took off work and helped as much as I could. I was in the hospital and beside my family every step of the way. I had one sister who struggled with everything. I somehow was able to hang in there and even got my sister to come to the hospital before he passed. You will be amazed at what you can handle. Never did I think I could be as strong as I was forced to be. You will be too. I pray your mother has a better day today than she did yesterday and that your family has peace. I pray that you have more strength than you think possible and that you are able to smile at least some. Just know you aren’t alone!

  62. Hi everyone,

    I’ve been reading and re-reading this post for quite some time and just now decided to post. My mom was diagnosed with ALS and moved in with me, my husband, and 2 small children. I hate this disease and what it has done to all of us. My mother’s timeline is:

    Nov 2015 subtle slurring of speech, fatigue, weight loss
    May 2016 workup done for possible parathyroid issues and myasthenia gravis
    July 2016 official diagnosis of ALS
    October 2016 no longer able to work due to extreme fatigue and noticeable slurring of speech
    Jan 2017 PEG tube inserted due to continued weight loss
    Feb 2017 extreme slurring of speech, drooling, no longer able to eat, unable to hold head up when fatigued
    March 2017 wearing breathing machine 4+ hrs/day, unable to drive, weakness in both arms, mouth twitching

    Thankfully, we put all of my mother’s affairs in order before her speech got so bad that she could no longer talk on the phone or sign documents. She also has insurance to pay for home care so that I’m not stretched to my limits with working full-time, taking care of kids, and caring for her. Everyone dealing with this disease has my deepest empathy and utmost respect. I’ll continue to update on my mother’s progression as I know timelines are a big curiosity for others.

    Thanks again to everyone for letting me read your experiences. It’s comforting in some way.

    1. I am so incredibly sorry to hear about your Mom. My Mom also was diagnosed with Bulbar onset after slurred speech. Her neurologist was very good and quick to diagnose it. She had scans to rule out stroke, etc…he went right to the neurological testing.
      My Mom was diagnosed Dec. 2012 at age 77. My Mom’s timeline:
      Oct. 2012 slurred speech noticed
      Dec 2012 ALS diagnosis
      March 2013 My mom could no longer speak
      June 2013 My Mom was put on Hospice care (early – but everyone agreed it was extremely helpful)
      Dec 2013 my Mom passed peacefully
      My Mom did not want any stomach tubes, breathing tubes to extend her life as she didn’t feel it would add to her quality of Life and she felt she had lead a very nice life up until the diagnosis. We supported her wishes.
      ALS indeed sucks. We were helped tremendously by the CT Chapter of ALS through out the ordeal.

    2. I can not wait for the day that there is a cure! I so hate ALS. It has been a while since I have commented on this site. My sweet daddy was free from ALS on 11/12/16. Just three short days before my parents’ anniversary. The last month was the hardest. Something I have noticed through this is most ALS patients have a greater acceptance of their fate than the loved ones around them. I think about my daddy every hour of every day. I miss him so much. I hate that your children are losing their grandmother, but they will be able to have good memories of her while she is still here. Small children tend to take these things better than adults and they tend to surprise us with what they can handle.

      It is comforting to talk to others who have experienced what you are going through. I will never forget how alone I felt when dad was diagnosed.

      One day there WILL be a cure! Until then, I will continue to pray for those affected by this most horrible disease!

  63. Hello, my mom was diagnosed with familiar onset bulbar ALS on January 11, 2016. She died October 10, 2016 . It says painful experience I’ll never forget.

    1. ALS is a horrible illness, and bulbar onset comes with an extra layer of trying conditions. I hope you are able to retain the memories of your mother from a better time.


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