Mother just bulbar diagnosed what to do straight away

[Roottoot]

Hi all,

My wonderful mother has just been diagnosed with bulbar onset ASD and I am devastated. She is mid 70s. She has been slurring and having issues with her tongue function for a few months, not exactly sure how many. Before that she was fine as far as we’re aware.

I believe this was triggered by a virus.

What can she/we do straight away to support her health and get on managing this physically? Any alternative treatments/supplements she should immediately start? future decisions to consider? I am so worried about how quickly this is going to worsen for her.

While she gets her head round this and waits for her referral to an ALS clinic I’d like to collect info on her behalf so she doesnt have to, she’s processing things right now and obviously very upset.

Thank you in advance, I’m very grateful this forum exists though sad it has to.

I hoped this might be a misdiagnosis as her EMG was ok and it hasn’t been repeated, but it was a while ago and her neurologist is unfortunately sure of the diagnosis.

 

[Nikki J]

The priority should be getting her to a specialist neurologist to confirm the diagnosis. Bulbar ALS is tricky and without a supporting emg or an ALS specialist I would really really want that next appointment.

Communication is a key issue. I am not sure if she is up to voice banking. However looking at text to speech for whatever device she uses is important. Eye gaze is the step after that for most though some use an alternative mouse.

Assessing swallow and nutrition If she is having swallow issues she may need to adjust consistency and consider a feeding tube.

How is her breathing? Has it been tested?

Of course she needs her paperwork in order and any wishes documented

You can think about her living situation but I wouldn’t do any irrevocable without confirmation

 

[Roottoot]

Hi Nikki,

Thank you so much for replying so quickly and at length.

Do you mean it’s tricky to diagnose? Or manage in general. I’m so gutted it’s bulbar.

I’m trying to find out who exactly diagnosed her as I can’t ask her anything right now but it was a top nuero in London (England) and I assume qualified to diagnose her. She said he was sure about her diagnosis and that it was made by basically eliminating anything else, she has had thorough investigations. I assume he wouldn’t have said it if he wasn’t sure. I can’t think what else it could possibly be.

I saw her today for the first time since April (she was speaking fine then). She talked for a few hours (laboured and slurring (for want of a better word)) and then was struggling. Her voice grew hoarse and her annunciation got worse and she kind of ground to a halt. I am very concerned she is going to lose her speech rapidly. I will have to try and bring up voice banking (THANK YOU for that suggestion) but she doesn’t want to talk about anything and I’m scared of sending her over the edge emotionally. She is very intelligent and knows a lot about health matters so she is probably under no illusions.

She is eating ok, she ate eggs florentine while I was there and it didn’t look too bad, but I could see her tongue is not working quite right. Some things she struggles with and says she bites her cheek etc and can’t coordinate it properly.

Her breathing is ok as far as I can tell. I’m not sure if it’s been assessed yet, i would guess not.

She’s otherwise ok, mentally and the rest of her body. Although she drove a short route that’s she’s been driving for about 40 years and randomly hit the curb on a straight bit of road. She said she’s never done that (always been a very good driver).

 

[Nikki J]

It sounds like perhaps it was an MND specialist that made the diagnosis then? When I said tricky diagnosis there can be misdiagnoses particularly if it isn’t made by an MND specialist.

There are a few MND specialty groups in London. Hopefully she is being seen there

If her tongue is not working correctly to control her swallow it is really important to adjust consistency and it is a moving target. Of course she is her own erson and she gets to control her journey.

If she was seen by an MND specialist they probably screened her breathing. My clinic does it every visit. It is a handheld machine that only takes a few minutes

 

[Hayley]

Hi, I’m so sorry that your mum has had this diagnosis. My mum was diagnosed with bulbar on set ALS 18 months ago. It started as quivering in her tongue and slurred speech. We thought she’d had a stroke. She had several tests including an EMG which were all normal. This made us doubt the diagnosis of MND. We looked into myasthenia gravis but the neurologist said it was definitely MND.

We were devastated. I did so much research and found this forum so useful. At present mum cannot speak and uses an iPad to type what she wants to say. She banked her voice almost immediately using speak unique it took 5 months before her voice became inaudible. I urge your mum to do this asap. She has a bite guard for the chewing of her cheeks and lips as she does this in her sleep. The choking was so bad whilst eating and drinking Mum had a feeding tube fitted a month ago and is doing well with it.

Mum put up a fight as she didn’t want to enter the next stage but thank god we persuaded her as it would be near impossible to get calories in her now. She still drinks coffee but it’s more of a habit as that’s what she likes. I worry about aspiration and I’ve ordered a biozoon to try just so she can still have the taste. She is very tired now and rests for 50% of the day even though she has the use of her limbs. She did run 25 miles in December 2023 for MND and raised £1500 for the cause which gave her a boost and a purpose.

Mums personality has changed more recently and she is almost child like which is devastating, not sure if this is depression or MND. We take each day as it comes. My dad is a saint and they laugh together every day. We are planning a weeks holiday in Tenerife in the next month, even if we don’t get there it’s the thought of going and the planning that keeps her mind busy.

Mum was 69 last week, we had a family celebration and got her to wave the candles out as she can’t blow. And the cake was a moose like cheese cake, obviously no biscuit base. She did only have a spoonful but it’s keeping things as normal as possible I guess. Sorry for the long message, sending you and your mum strength and love xx

 

[sudulski]

I have bulbar als. My doctor recommends vit c 500mg daily, vit e 400 units daily, beta Caroline 25000 units daily, coQ10 200-600mg daily

 

[Racgail]

Hi Haley, sounds like our mom’s going through same thing. My mom is 88 and was diagnosed with bulbar onset in February and I believe she has had it 1.5 yrs based on symptom onset. She got a peg tube in April and she too wants her coffee. She chokes on it awful and scares me. She started Prozac this week for depression and she is definitely more tired. We had our second als clinic appointment Monday and so far it has not spread to any other region. We are waiting on the dynavox tablet. I moved in with her a few days ago to care for her although she is pretty independent.