Bulbar als

[Paulbx]

MJR, I am a patient of ALS (PALS) with Bulbar-onset ALS. I was diagnosed in August 2023. My first symptoms showed up in January 2023. I do not think I’ve had any impacts on mental capacity, memory, etc. (I’m 57 years old.) My dexterity and general muscle control has not demished really. I take ‘longer’ to eat than I did before mainly because I have to be careful about it or else it starts a choking episode. I use various products to ‘thicken’ my liquids to ‘Nectar thick’. I find that the textures of food become significant. (I recently had to stop with Greek Yogurt as it’s ’too smooth’. I couldn’t eat cheese cake before that. But, I did eat the filling of a key lime pie! And, ice cream remains my friend.)

I have had to be mindful of diet makeup to avoid constipation. (Have used some laxatives in the mix.). I have a history of a kinked colon, so have been mindful of my dietary makeup for many years. So, mixing in some greens (leafy greens are only edible if they are shredded right now and mixed into other things). The viscosity of the fluid is important. I’ve used a hand ‘blender’ to mix soup with bread to make a ‘thicker’ soup as well.

Because I’m loosing control over my muscles in my cheeks and around my mouth, it looks kind of like I’m ‘staring Into space’. But, that’s not it at all. It’s just the control over the mouth that sets that off.

i’ve had some success with a Botox treatment in my saliva glands for my drooling. I had my second ’injection’ series just recently. They seem to help me. I plan to continue with them on a regular basis. (My Neurologist performs these.). I also have an oral suction machine to help with the oral hygiene.

I do certainly have more ‘gas’ even than before. . But, that is more likely from the change in diet than anything else.

I’ve ’discovered’ recently that I can ‘mix’ soda (mineral water, cokes, etc.) with my thickening powder. While it does make it less ‘gassy’, it does still help with the ’gasses’ in my system.

I’ve lost perhaps 35 pounds since the first signs (January 2023 to today January 2024). But, I‘ve still got at least another 40 pounds to loose before I would be considered my ideal weight anyway. Sure, I’m not consuming the same caloric load as before because I find I cannot really consume some things which I used to enjoy too much. I’m taking longer to eat, for sure. But, I’m still eating lots of protien.

I would tell you that bring any concerns you have on mental stability to the attention of your Neurologist. Make sure they conduct the right exams. But, also realize that facial expressions can be deceiving in this sense.

By the way, sorry about the long post. I’m known for writing a lot of text. . Also, this is my FIRST post on this alsforms.com site. I found it therapeutic just to write these things out in ‘public’. And, I’m happy to find a community of people like me — those who are experiencing Bulbar-onset ALS.

 

[SteveO]

Welcome and sorry you are here. You will find a wealth of information here as well as compassionate Pals, Cals. I’m just entering the thickening phase for liquids. I have limb onset and my bulbar symptoms began 10/22 and I have a peg for most of my nutrition and hydration but still drink water by mouth.
i have a friend locally who was diagnosed in September with Bulbar, they are doing Botox injections also, how long did the benefits of these injections last? I believe she is mainly trying to minimize the saliva issues.
There are no stupid questions but use the search feature and read the sticky posts before h to get information first.

 

[lisa g]

Paulbx have you been to a ALS clinic? Has your neurologist talked to you about having a feeding tube placed? The earlier you get this done the easier it would be on you. You may not need to use it now but at some point it will become necessary so you don't have aspiration into your lungs.
I am on my 3rd round of Botox injections for excessive saliva. It helps me for awhile then as the Botox wears off the excessive saliva starts up again.

Sorry to have to welcome you into the club that no one wants to be part of. Ask as many questions as you need there's always someone that can give you an answer or offer some tips.

 

[Firefighter58]

Hay there gang for what it is worth my Doc. Prescribed a liquid and with two drops on the tongue in the morning and the same at bedtime I have no saliva issues any more.
Al

 

[Paulbx]

My first treatment (set of injections into the face/chin/neck — going for angles on salvia glands) was Oct 15th. My secnod set was not until January 19th. We’re going to try to do the next one in only 2 months as frankly, after 2 months (by mid December) I was back to my saliva output I had before the first injection.

My GP recommended I use a ‘Buff cloth’ (basically a fast drying towel) and wrap it on my wrist. That way when I start to drool, i can very easily absorb the extra saliva coming out. In social settings it works pretty well. Just looks I have an ‘accessory’. . But seriously, it goes so unnoticed that sometimes people hand me a napkin when see the drool forming.

As I mentioned, I have an oral suction machine now, but only have started to use that. It’s great for oral hygine, but unless I’m sitting next to it, I doubt I would use that machine to clear my excess saliva.

I’m sorry to hear that you’ve started down the Bulbar symptoms. I suppose that means your overall ALS has been with you some time now.

My post here was in response to a posting in the ‘CALS’ subgroup. I did not know I needed to post to the PALS group. Oh well, next time I’ll know better. So, my post maybe makes more sense in that thread‘s context.

 

[SteveO]

Paulbx yes in April it will be 5 years since my first symptom. Until the last few months my Bulbar symptoms were mainly swallowing and speech. Since about October the salIva monster has come out in full force.

 

[lisa g]

I'm right there with you SteveO. In April it will be 5 years since my official diagnosis though I was symptomatic since 2016 and didn't realize it.
Within the last year the saliva has been out of control. Besides the Botox I also take Glycopyrrolte for breakthrough saliva and use 2 drops of Atropine at night.

 

[Firefighter58]

I have used Atropine for 10 years with no problems,nothing else is required.
Al

 

[Paulbx]

Early on, my doctor prescribed Ipratropium Bromide (a nasel solution, which I would ‘spray’ on my tongue directly). After about 2 months of no success, we went down the path of the Botox. The saliva is manageable. And, while perhaps I’ve aspirated once or twice due to saliva before the Botox, since the Botox, I’ve found that i really don’t have aspirations due to saliva build-up. but, then agsin, due to muscle control, I suppose I’m drooling more.

I also find that if I’m exerting myself (lifting things, or bending down a bunch), I tend to have even greater saliva build-up. (And yes, I’m practicing my breathing techniques that I was taught by speech and physical therapy. I go for speech therapy weekly, but I’ve only and an initial assessment with physical therapy — to get a baseline. )

Managing the aspirations requires frankly quite conscious/deliberate eating technique. The ‘easiest’ way is just going for puréed foods only. But, that is ‘boring’ and ‘unappetizing’ and goes against my moto of ‘living life’. Sure, I eat a lot more yogurt and ‘mashed up’ foods like a Burrito Bowl with lots of small things mixed in a ‘mixture’ with sour cream, cheese, and guacomole. But, I do find i can eat a steak (rare to medium rare is better than well done - from swallow standpoint). I have to cut it up into small pieces, and sometimes have to use my finger to ‘move’ it to the right spot to chew. But, I can do it!

 

[lisa g]

Paulbx, does dairy products effect your saliva? I find dairy products increase mucus and saliva. I was vegetarian for a long time and then went to vegan. All that kind of went out of the window with this disease. I do get a burrito bowl from a local restaurant. I either have tofu or chicken for my protein. I add the extras at home non-dairy cheese and sour cream. My husband will put it in a nutribullet blender with added water and liquefy it. I can then drink it through a straw so I can atleast taste it or thin it out enough to take it through my feeding tube.

 

[MJR]

Thank you Paulbx, it been very helpful to have insight into what other people with the bulbar are experiencing, there are more things going on with his cognitive problems then just the blank look he has at times, . I have noticed that the thicker things are, the less choking there is, i purée most of his food, andhe uses yogurt to get things down also,

 

[Paulbx]

Lisa_g, I have not found dairy is a problem. With bulbar onset, I lost the ability to use a straw early on. (Cannot ‘suck’.). But, I get your point about tasting the food. A Puréed chilli is better than a bland pre-packaged puréed food. I cannot say that my saliva has affect things too much in the way of eating. Though I have to admit, I’ve not correlated it.

MJR, I suppose I am a little sensitive about mental ability. So, please excuse my point about blank stair. Your tip about mixing yogurt is a good one. Thanks for that! And, yes, thicker is better. It’s the ‘smoothness’ which sometimes gets things hung up. I suppose that is part of the transition from ‘nectar thick’ to ‘honey thick’ which we will experience.

I am fortunate in that I can feed myself, even if it means I have to sometimes push things into my mouth and manipulate them in my mouth to get things clear. Though, that only is yet another thing about Bulbar. It starts with the mouth and goes for the respiratory vs. starting with the limbs first.