First visit

[Polly]

My husband was given the diagnosis almost 3 weeks ago. It came as a complete shock as the most likely cause of his slurred speech was myasthenia gravis. His way of dealing with it at the moment is by not talking or thinking about it too much. Unfortunately, I know far more about it, and am finding it very hard. It’s very early days and I’m trying not to look too far ahead.

I have found the MND Association website very informative, but have only just discovered the forum. I am sure I will find it really helpful to communicate with people going through similar experiences.

[Barry52]

Hello Polly and welcome.

If the primary symptom is slurred speech in your husband then he may have the primary lateral sclerosis form of MND which is slow progression. This is how it started with me 7 years ago. I must point out that most neurologists arrive at this diagnosis after monitoring progression over a few years and I am not qualified to confirm this. I only hope to give you some hope in what must be troubling you both.

You will find many of our forum family eager to help with support and advice on your journey ahead.

Best wishes,
Barry

[Kayleigh]

Good afternoon Polly,

A warm welcome to the forum. The diagnosis is usually a big shock and there is a lot to come to terms with - but there is a lot of support available for everyone affected by MND.

I have found a lot of support from the very friendly people on this forum and also from the MNDA.

You might have already noticed that the MNDA main website is being updated today - but there should be information on there about local support that is available for you and your husband. The MNDA have local branch meetings that are usually held approximately every month. You will also be able to get support and advice from your local MND Regional Care Development Adviser.

The people on the MND Connect helpline are very friendly and knowledgable and so please don't hesitate to phone them if you would like someone to talk things through with. They can also ask your local Adviser to contact you or your husband, if you would like them to.

You are very welcome join in on this forum and ask for advice, as often as you would like to.

Love Kayleigh x

[Ellie]

Hi Polly,

Sorry you find yourself needing the Forum but a warm welcome to you and to your husband.

It will take time to get your heads around the diagnosis and we all cope differently with the news.

Did your husband have the EMG tests and its results, along with his clinical exam, lead to his MND diagnosis?

Or, as Barry alluded to, was the diagnosis arrived at by another means?

It's very early days but hopefully you'll find this Forum a useful and supportive resource.

Love Ellie.

[Polly]

Thank you Barry, Kayleigh and Ellie. The diagnosis is bulbar onset MND and yes, he had EMG tests.

At the moment we are being referred back to our local health authority for ongoing care, which I hope will make things easier. Last week he had an enormous amount of ‘hard sell’ to have a PEG fitted. I know it will be needed in the future, but this pressure so soon after diagnosis was very difficult for him.

[nunhead_man]

Good afternoon Polly,

A warm welcome from me to the forum.

Being told you have MND is usually a big shock and there is a lot to come to terms with - but there is a lot of support available for everyone affected here and elsewhere.

Speaking for South London branch we do not bring people together monthly but bimonthly, and that for coffee, cake, networking and information at one or other of our local hospices (Trinity, Clapham, St Christopher's Sydenham). If you are in South London come and be welcome.

Warmly

Andy

[Ellie]

Yes indeed Polly - he and you both need time to process the life changing diagnosis before thinking about a feeding tube.

Gentle advice though: if the professionals raised the issue, albeit a bit aggressively by the sounds of it, he should start thinking about it when he feels he can do so without undue pressure. For now, just focus on yourselves.

Love Ellie.

[Deb]

Hi Polly,

A warm welcome to the forum but I am so very sorry for your husband's diagnosis. It is a huge and devastating shock for you both and also for your family.

I guess we all cope in different ways. When I was diagnosed I found all the sensitive and very well meant advice and support from professionals totally overwhelming. However, other people would possibly welcome it. I needed time to come to terms with things first and once my husband and I had told our close family we were fortunate enough to have a holiday where we could talk about our options. It was then I could accept practical help and adaptions.

Take Care of each other in these early days,
Love Debbie x

[Polly]

Ellie, I know what you are saying so tactfully! This type of MND develops more quickly. You are right though, a gentler approach would have helped.

[Gillette]

Hi Polly,

Welcome to the forum. As you will have seen, it is a friendly and supportive place to be. It took me a few months to get enough courage to even look at the MNDA website, let alone find out anything about the disease. For those few months I had ostrich syndrome - I kept my head very firmly buried in the sand.

An MND diagnosis is really scary, however there is a lot of information on the MNDA website if you want to find out anything about MND. I have found some of the booklets very useful, particularly:

http://https://www.mndassociation.or...-care-NICE.pdf

http://https://www.mndassociation.or...ive.pdf?7d15ee

http://https://www.mndassociation.or...ack.pdf?7d15ee

Don't forget to take care of yourself, Polly.

[Lynne K]

Hi Polly. A very warm welcome for you and your husband (if he has the courage to read the forum comments). I'm very sorry that you've had to join us. As everybody has already said, an MND diagnosis is a huge shock for everybody to take. I hope that your local services ie OT (Occupational Therapist), physio, speech therapist and wheelchair services give your husband appropriate support. When your husband feels like talking about his future please bring up the subject of voice banking. I don't know how slurred his voice is, so as soon as you can get a speech therapy appointment so options can be discussed. The soonest he can is best for voice banking. I send an electronic hug. Look after yourself. I don't say that unthinkingly. I mean it whole heartedly. It's hard for us who have MND, but we know that our loved ones carry a heavy burden too. Lynne

[Polly]

Hi Lynne

I very much doubt that my husband will look at the forum. We all deal with problems in our own way and some people want to know more than others. We have a lovely local speech therapist already but he thinks someone more experienced with MND will take over. Not sure whether voice banking will be an option, but I’m hoping transfer to local therapists will happen ASAP.

[shrew]

Welcome Polly, you will find lots of support on here x

[Lynne K]

Ok Polly. Good luck with finding a more experienced speech therapist. Lynne

[Barry52]

Hi Lynne

I very much doubt that my husband will look at the forum. We all deal with problems in our own way and some people want to know more than others. We have a lovely local speech therapist already but he thinks someone more experienced with MND will take over. Not sure whether voice banking will be an option, but I’m hoping transfer to local therapists will happen ASAP.

Hello again Polly,

You mentioned your husband being unlikely to visit the forum. This is quite common for people recently diagnosed. Depending on where you live and the clinic treating your husband there is a new treatment called acceptance therapy offered by numerous MND clinics throughout the country. I am connected to the advisory steering group and we have just held a meeting today which reported good feedback from participants. It is now recognised that the psychological impact of diagnosis of MND needs addressing so this treatment is being offered at many clinics throughout the country.

You also mentioned the pressure for your husband to have a peg fitted. This is a personal choice and yes if disease progression is rapid then it is sound advice but don’t rush into all the decisions too early.

Best wishes,
Barry