Newly Diagnosed Bulbar Onset

[GillB]

Hi

I have been browsing this forum for a few months now but think it is time I post. I was diagnosed with bulbar onset on 3^rd November after my voice started changing about a year ago. I put it down to stress but eventually went to the GP in June. He sent me for to an ENT and all was ok. I lost count of how many times I went back to the GP but it was only when I saw a private Speech Therapist at home in September that red flags for MND were spotted. I was referred to Sheffield MND Centre and finally diagnosed on 3^rd November. I live alone with my 17 year old son and have no family nearby. I have lost my voice totally and use Predictable 6, am on soft and bite sized food and have starting using thickener this week. I have been off work since the end of June and finish at the end of the year. I am due a Peg on 14^th January. I am getting help from the local team but without a voice things are so difficult. I am trying to take one day at a time but alternate between sticking my head in the sand and being terrified about the future.

[Lynne K]

Hi Gill and well done having the courage to post. I’m sorry that you are alone apart from your son. I hope that your PEG procedure goes well on 6th. Predictable is kind of slow to work but the good news that I got in an email from them is that it now works with eye gaze… You’re doing well to take each day as it comes. I’ll watch for your posts. Love Lynne xx

[Worsleybird]

Hi Gill same here, diagnosed with MND Bulbar onset in July 2021, been off since April when I started slurring and will probably be offered medical retirement this month. I keep resisting the PEG much to the frustration of my consultant but the stay in hospital for 5 days when you can hardly speak is very daunting for me, particularly as I have breathing issues supposedly due to overnight oximeter test and will have to stay in a hospital some way from my own local one. I have 14 year own twins and a lot of support but tend to keep things back from the family as I dont want to worry them unduly. I get everything you are going through and thinking and yes in my case too the SALT mentioned MND way before any of the consultants did.

[matthew55]

Hi GillB welcome along to the very best place for help, advice and friendship. We know because we are going through the same as you. 🤝🌹😁❤️xx

[keno]

Welcome Gill

[Derbyram21]

Welcome Gill This is a great place for support and advice ! X Take each day as it comes x

[GillB]

Thanks everyone.

Lynne K
Derbyram21 keno
Worsleybird - yes the stay in hospital is very daunting with no voice . I am trying to keep things from my son too. I don't have breathing issues yet and hope to use it for water at the start. Consultant offered it to me on diagnosis, which I declined and then went back the day after and said yes,
matthew55

and to to add to chaos we have a 10 month old Golden Retriever.

[LindaB]

GillB welcome to the forum and sorry you've found yourself eligible to join us. You've been browsing so you already know that there are some amazing people on here...always glad to offer advice and support. Lots of humour too and a safe place to vent!!

Hopefully good support for your young son too via MNDA & your hospice team.

The good thing about being here you don't need to feel alone 😘🤗

[GillB]

I do indeed LindaB
I even got the idea of using Borrowbox off here.

Managing for the moment with home visits from Salt and Dietician, video calls with the MND nurse. The hardest is dealing with the GP but I have friends nominated to speak on my behalf. I am waiting for a referral to the local hospice in the hope of getting counselling.

[Gordan1111]

Hello GillB - very sorry you've joined us. I've also got bulbar onset. I hopefully you'll both find the dog a comfort and good addition to you both xx

[Mary C]

Hi GillB
so sorry to hear of your diagnosis.I had my RIG fitted in June at Coventry hospital and the ward asked my husband if he wanted to stay in with me which he did.When you can’t speak it must be frightening( my voice is on the way out and trying to learn predictable 6).The ward was trialling MND patients having someone stay with them .

Is it worth asking the ward staff if you want someone to stay in hospital with you?

Can you write something up to print off for ward staff about your care needs/ personal care routine?( a couple of copies and update pre admission)To remain with you in hospital.

Can SALT team give you a basic communication board to take to hospital in case you just need to point rather than write on predictable app.?

just thinking aloud…So glad the local team is supporting you and hope your son gets their support too.
There may be others on this forum who are in similar situations that can help you.
Best wishes
Mary

[GillB]

Hi Gordan1111

We got him in March when all was good. He is a comfort though and helping my son.

[GillB]

Hi GillB
so sorry to hear of your diagnosis.I had my RIG fitted in June at Coventry hospital and the ward asked my husband if he wanted to stay in with me which he did.When you can’t speak it must be frightening( my voice is on the way out and trying to learn predictable 6).The ward was trialling MND patients having someone stay with them .

Is it worth asking the ward staff if you want someone to stay in hospital with you?

Can you write something up to print off for ward staff about your care needs/ personal care routine?( a couple of copies and update pre admission)To remain with you in hospital.

Can SALT team give you a basic communication board to take to hospital in case you just need to point rather than write on predictable app.?

just thinking aloud…So glad the local team is supporting you and hope your son gets their support too.
There may be others on this forum who are in similar situations that can help you.
Best wishes
Mary

Hi Mary C


Yes it frightening but currently finding it more frustrating. I'll take the Ipad, boogie board and also pen and paper. They tell me I will be on a ward where they are used to MND patients. I haven't anyone I can ask to stay in with me but pre all this I was very confident so will need to dredge that up from somewhere. Yes that is a good idea and I will write something up re care needs, medications, next of kin etc.

[LindaB]

I do indeed LindaB
I even got the idea of using Borrowbox off here.

Managing for the moment with home visits from Salt and Dietician, video calls with the MND nurse. The hardest is dealing with the GP but I have friends nominated to speak on my behalf. I am waiting for a referral to the local hospice in the hope of getting counselling.

Borrow box is great...love anything free😃 and our (very informal) book club members have made some great recommendations📚

Linking with the hospice team has also helped me regarding liaising with the GP. I e-mail the hospice nurse with any GP requests and she contacts them (she also attends the surgery monthly)👍🏻😘

[GillB]

LindaB That's useful to know. I'll get someone to chase up my hospice referral.