Bulbar MND newly diagnosed

[dolomitesquirrel]

Hello👋🏻
My husband is a very fit 56 who was diagnosed this May. He has had some problems with his speech for roughly 6 months. He is still able to talk and is taking riluzole.
When we see the specialist it is depressing as they are quite bleak regarding the future. We both know there is no cure and that it will get worse. It’s just in regards to the future what do we do? Do we move into a bungalow? Do we travel while we can? I know bulbar MND is different for everyone in terms of progression so it is difficult to predict. So many thoughts going round my head. Any help/advise greatly appreciated😊

[Ellie]

dolomitesquirrel A warm welcome to the forum, sorry about your husband's diagnosis.

If only we had a firm road map for our progression, eh, that would make planning sooo much easier...

I would say yes, definitely travel as much as you both want to, it's very difficult to know if you should move house but, if your current house has small bathroom(s), small rooms, tight stairs, outside steps, narrow hallways, then moving to a bungalow or house with downstairs accomodation might be the sensible option. If your house lends itself to potential adaptations, you wouldn't need to move.

One thing he should do now is voice banking.

I know your head is like a washing machine right now and it's too easy to get overwhelmed, so try break things into bite sized chunks.

Look after yourself.

Love Ellie.

[Ellie]

dolomitesquirrel If you or your husband aren't fully aware of what voice banking entails, the MNDA's fact sheet on it is here

[matthew55]

Welcome dolomitesquirrel try taking a step back and focus on the short term. We have all been where you are so feel free to ask anything. You're not alone anymore. 🤗😁💗🙏xx

[Gordan1111]

Hello dolomitesquirrel - others on here also have bulbar onset (as I have.) I've had voice-banking done. But not made any adaptions to house yet. One thing - try and make allowance for any mood-changes. Best we could manage was caravan year before had diagnosis confirmed but would have trouble doing now ... xx

[Shaun]

Hello and welcome
Like all off us, in these first few months it’s a struggle to understand what is happening, try to take a breather and enjoy what you have now.
Please don’t rush into making hasty decisions, try to understand how it may progress first, there’s no point in rushing to buy a bungalow, as you will discover most of them will need adaptions anyway and you may not need them for a while
I agree with Ellie , go out, travel , see that show in the west end, make lots of nice memories and spend the kids inheritance.
S.

[LindaB]

dolomitesquirrel it's devastating and overwhelming sorry to hear that news but welcome to the forum. I'd agree with others do what you can while it's possible. Lots of advice on here and some very knowledgeable people who are always happy to share. It's a good space 🤗😉

[John D]

dolomitesquirrel We all know what a tough time you’re having and that there are so many difficult decisions to take. I would say travel while you can - we haven’t thanks to COVID. Insurance for foreign travel is available.

Whilst not knowing where you live, I would say don’t think about moving but get advice from your council’s Occupational Therapist about possible alterations to your existing house. Unless you are in a centre of excellence, get a 2nd opinion, not so much for looking for a different diagnosis but for sharing care between the current hospital and a centre of excellence. Teams in respiratory and gastrology and palliative care departments should all be swinging into action to give advice and monitoring.

Arrange voice banking ASAP. Do you have a Speech and Language Therapist on board yet? Start thinking about having a PEG fitted for tube feeding even alongside eating normally. May not need it in near future but the time may well come.

Use all the resources that the MND Association has to offer.

Think that’s enough from me for now, Very best wishes

[Banned]

I had professional advice that I wouldn't see out 2013! There is much that is not understood about MND by the NHS and MNDA.

[Heather R]

dolomitesquirrel Welcome to the forum. As everyone says, so unpredictable! I have bulbar onset, and the jury is still out on whether I have done the right thing moving to a bungalow from a terraced house I loved, with steep stairs. Ever since I got diagnosed in July 2020, I have been encouraged to move, which was expensive and stressful. There now appear unforeseen problems with the bungalow, which the adaptation OT came with me to see before I bought it. (Can't expect her to have known everything). I am still waiting for a definite date for the adaptations, probably 3-4 weeks worth, for which I have to vacate the house (when my health is decidedly worse, with walking restricted not by legs but lungs). Hopefully I will survive it all and it will be lovely.........( I must admit I did resist having a PEG tube, but am finding it useful now). So impossible to really advise, Speed of deterioration and in which order impossible to predict, bulbar onset said to average reduced life expectancy, but who knows. All the best in whatever you decide x

[Lynne K]

dolomitesquirrel Welcome. I won’t add anything to the advice that you’ve already received but I agree about voice banking, explore PEG options and speak with your husbands OT about what possible adaptions or a house by move would best. But definitely enjoy each day as it comes. Look after yourself, Lynne x

[dolomitesquirrel]

Thank you each and everyone of you who have replied. Your experience and advice is greatly appreciated. My husband is carrying on his normal routine of running 4 times a week and walking our dog 2 hours a day. His speech is slowly deteriorating. He has voice banked with a link sent to us by the speech team at the hospital. He was not particularly impressed with the voice banking to be honest. We live in a semi, it’s just so difficult trying to predict our future.
Looking back he was having subtle problems with his speech well over a year ago. It became more of an issue at the beginning of the year. Officially diagnosed as bulbar in May. Still speaking although not always understandable. Eating normal diet albeit more slowly so 5months on not much has changed thankfully. I know it will.
Thank you again everyone I’m sure I’ll be back asking questions soon xxx

sorry I don’t know how to add everyone’s name to say thank you 😳

[Hakuna]

Its comforting to hear about other people's experiences and journey. I'm also taking riluzole. I haven't had a peg fitted. I would like to resist that for a while. I managed liver & bacon yesterday & cottage pie tonight, although only small amounts. Goid luck for your future.

[Ellie]

Thank you each and everyone of you who have replied.
sorry I don’t know how to add everyone’s name to say thank you

No need for 😳, you covered it in your first sentence 🤗

If you want to use the @ symbol in front of a user's name, that tags the user - like dolomitesquirrel is tagging you, or you could just type a user's name.

Anyhoo, sorry to hear that hubby's not overly impressed with his voice banking results - if he hasn't done so already, it might be worth contacting the company and asking if it can be improved upon. xx

[matthew55]

It really is best to get a PEG fitted long before you need it. It's all about the procedure. Just saying. 👍😁🤗😍xx