Newly Diagnosed - When to tell family and voice banking advice pls

[Ian C]

Hello,

My name is Ian (43) Newly diagnosed with MND 3 weeks ago but been living under the diagnosis cloud for 14 months.

So far i haven't told anyone bar my partner and struggling to know when to tell parents, family and friends (will leave the kids for now).

Voice is probably 50/50 now, as i sound very nasal, since Xmas I've been telling everyone i have an issue with my nose.

We have a big family wedding in July i was hoping to leave it till after that (maybe selfishly as I don't want people asking "are you alright?" every 5mins) however with the voice tailing off July may be a bit of a stretch.

Anyway, thanks for listening what i wanted to ask was a) any advice/lessons learned/experience for telling loved ones (hoping not to bring back any painful memories for anyone)? b) any suggestions re which voice banking tool to use?

If i've put this on the wrong thread then apologies and please feel free to point me in the right direction

[Bowler]

Hi Ian, welcome to the forum which is possibly one of the best places to find support, advice and strength freely given by those that are walking in your shoes.

in terms of telling family IMO there is no right or wrong time only the right time for you. I will say the first time is the hardest but then most things are.

in terms of voice banking have a look at “I will always be me”. It’s simple, free and if necessary the MND Association will lend you the equipment. I will warn you when you listen to the YouTube article it will be quite emotional. The other thing about “I will always be me” is that the banking is done by way of reading a story telling people a little about what is happening to you which can be useful.

this is the link https://m.youtube.com/watch?v=NTN0uZxwu7s

[Tony]

Hi Ian and welcome. Telling people is difficult and very emotional and there’s no getting around it. Once done though it’s a great weight off your shoulders. I did voice banking very early on although I’ve not yet needed to use it. Sooner the better though. All the best to you

[PeterPan]

Hi Ian

There isn’t one right answer, you have to do what’s right for you. What I can say is that I told everyone as soon as I could and the love and support I got back was instantaneous and so reassuring. Even from grandchildren under 10. It was difficult to mask my failing speech - people probably secretly worried about my alcohol consumption! It was a huge relief, and people didn’t ask me how I was when I’d told them. They respected the problem.

Your local speech and language therapist will advise about voice banking. Do it asap

Sorry to welcome you here, but you’ll get great support and varied opinions. Best wishes

[JamesW]

Hello Ian,

Welcome to the forum and I’m sorry that you find yourself here 😔

I can’t really add to the great advice you have already received above other than to say do not leave it too long. Yes it is difficult but your loved ones (especially close family) will want to know. Keeping it from them for too long could cause additional upset but ultimately you know them and can be the best judge of this.

Take care,
James

[Ellie]

A warm welcome to the forum Ian, so sorry you've had to join us.

... any advice/lessons learned/experience for telling loved ones

You know your audience best but... well, honesty is the best policy. I would hazard a guess that some folk are wondering what's up as it is, maybe putting 2 and 2 together and probably getting 5. I told close family and friends immediately, but I suffer from verbal diarrhoea 😏

One thing about voice banking: if you are using that "I will always be me" recording tool, prior to recording, read it aloud numerous times to desensitise yourself to its emotional content.

Many people rate SpeakUnique highly for voice banking too. Either way, the process starts with your Speech and Language Therapist.

Love Ellie xx

[MMG]

Hi Ian

We told our adult sons immediately as we are not good enough at hiding our feelings and they would have known something was very wrong. They suspected something nasty anyway given the symptoms and the GP had already incorrectly suspected a brain tumour.

In terms of wider family, hubbies siblings etc and aunts and uncles ( There are lots of them) his older brother acted as gatekeeper and told everyone for us. This was very kind of him and much appreciated by us.

Similarly a trusted relative passed on the news to my side of the family and a trusted work colleague told people at work etc.

Might seem like ducking the issue, but like you we found the "telling" very difficult.

Some people have subsequently stayed away, through fear I suppose, others have remained close.

A bonus is that old rifts have been healed.

We have found that fundamentally people have been very kind and caring.

We couldn't have hidden it for long as his mobility went very quickly.

We voice banked after his voice had started to go, but his "bionic" voice sounds very much like him.

Best wishes xxx

[LindaB]

Ian C welcome to the forum & our MND family....the good thing is you can dip in and out of this space whenever you need to.

Telling loved ones isn't easy, there's advice on the MNDA front page which is useful especially regarding telling children.

Telling my adult daughter's was tough especially in the middle of the pandemic.

I banked my voice using Acapela & the Predictable App....supported by my speech & language therapist and MNDA.

Look forward to reading your posts 💙
👍🏻😉

[AngieCanuck]

Ian C welcome and sorry to hear about your diagnosis. I think we’re the same age, but I’m not sure about the ages of your children. I have an 8 year old daughter, and found some great resources that were age appropriate depending on the child’s age. I also have started her with a therapist that deals with anticipatory grief in kids. It isn’t easy, but I share information in dribs and drabs, trying to not overwhelm her.
With family, friends and colleagues I have been pretty selective about who I’ve shared things with. I’ve found I can only handle actually talking about it all with a few people.
The good thing is that you now have all the helpful and knowledgeable people on the forum. Speaking with those who are going through similar situations has been such a comfort and resource.
Hang in there, and enjoy everything that you can, while you can. Sending positivity and hugs!
Angie❤️🩹

[Ian C]

Hi everyone,

Thank you all for taking the time to respond and sharing your experiences.

It's nice to have a space to finally speak openly and honestly about what's going on.

More questions will follow

Thanks for listening
Ian

[Marc from London]

Hi Ian C

sorry for reading your post only now. I know pretty well what you are going through. My situation is similar. I am 45 and was diagnosed with ALS October 2021. “Luckily” i have limb onset so speech and all the rest are still fine. I have also not told everyone yet. I started with my wife and mum first then I told my brother. A few weeks back I told my employer. I found it’s a lot easier to tell my employer by sending an email with the heavy stuff first. That made it so much easier. My children are both around 10years old. I have mentioned to them that daddy has some problems but did not go just yet into the difficult bits. Next month I will tell all my Friends. It’s gonna be an emotional time and I have pushed it out month by month. However time I feel is right to come clear as emotional as it will be.


stay strong
marc

[shelly21]

Ian C A late welcome aboard from me. my first symptom was slurred speech. Re telling family i did it asap. I visited my elderly parents and yes it was tough. We all probably think pants that we are inflicting pain on our loved ones. The rest of the family I did a group chat (I've got a huge family). I told them that regards to survival rates etc that they cannot give. That everyone's journey is different. I advised them that please be cautious on the Internet and if they did wish to find out more then to read the mnd association site. Only my sister who is a nurse asked me which type of Mnd and I am an honest person so told her.

Have you seen your mnd nurse yet? They give you a mnd association pack that as a large a4 size book in it. It covers mnd and symptoms etc that you can either read all or dip into when you choose.

[Chris Mottram-Wooster]

re voice banking, do it as soon as possible. My partner didn't really take the speed that you can decline seriously untill her voice had gone too far. Once it's done you don't have to worry about it, but do get it done.