Husband has MND- what now?

[user1471461791]

Hi,
Long time lurker on MN, first time poster.
I don't know what I want from posting, just need to get it out.
My wonderful husband has been diagnosed with MND, it has taken a year to get diagnosed. We have two children, one in primary the other in secondary.
How do I do this? How can I find the strength for this journey? How do I deal with burning rage that I feel, its so unfair! Why him? Why us? He is only 44!
We had so many plans, things we wanted to do.

I have no answers for you, just wanted to say how sorry I am this is happening to your family. Have the clinical team given you contact details for relevant charities for practical and emotional help?

I'm so sorry you are going through this. I have worked with patients with MND. You will hopefully be put in touch with an MND Nurse specialist who will be able to talk things through with you and discuss the best way to manage symptoms. The MND society are also a great source of support and information on practicalities, equipment, benefits etc. Many local hospices can offer respite care and symptom control if you need that in the future.

I'm so sorry.

Please contact www.mndassociation.org/support-and-information

I'm sure they can be some support for you and your husband.

From an entirely practical point of view, you need to get in touch with adult social care and arrange for an occupational therapist to assess his needs.

Thank you for the replies.
We have been put in touch with the MND charity and local community nurse.
It just feels so surreal at the minute. I feel so overwhelmed with all of it. I am fortunate that we have support around us.

So sorry this has happened it literally feels like being given a death sentence. I have cared for a number of people suffering from MND over the years and all I can say is it is so hard but there isn't really a text book. Try and do as much as you all can while you can. Get things in order and say everything you want to say. There is a lot of support out there. It can affect people differently and many people seem to battle on longer or others have a more aggressive form.
One man I looked after used to say why does everyone talk to me about dieing when all I want to do is concentrate on living.
He tried to live as healthily as possible drinking Aloe Vera juice which he swore helped him but nobody can be sure what it's going to be like.
I hope somebody can give you better advice soon. All I can say is make the most of every day and live the best life you all can. In sickness and in health and get as much support as you can for all of you.x

I’m so sorry. A friend’s relative has this awful disease.

Practically, I would find out what benefits you can claim.
Does your home need adaptations, the local authority should be able to assist you with the work/ grants. Find out what help you can get and how long the help takes. He may hopefully not need it yet, but might one day. Likewise carers, they can come in to help (if needed). You may need a break at some point, it’s just useful to know.

I’d look at any clinical trials that he may be able to take part in. Any drugs he can take to slow the progression.
https://www.mndassociation.org/research/clinical-trials/treatment-trials

Also, look after yourself OP.

I am so terribly sorry to hear this @user1471461791 . Last year I found the mnd association incredibly helpful and supportive. My husband has some as yet unidentified neurological problem, last year MND was our greatest fear.

I latched on to the idea we should do voice banking is this something you have considered?

I don't know how you do this. I'm glad you posted 🌷🌷🌷

I’m so sorry Op, someone in my circle has recently been diagnosed too. I know the MND association has been amazing. She’s also connected with our local hospice and found that really useful too.

@BeanWriting I hope you get some answers soon,the uncertainty is soul destroying.
The community nurse is referring us for voice banking, it is something we both want. Especially for our children.
We are compiling a list of things we need to sort: blue badge, PIP, life insurance policies etc.
My head is in overdrive, trying to think about what needs to be done, making sure we are saying the things that need to be said and making the most of our time.

Sending hugs to everyone who needs them x

Hi, I am coming up to the one year mark since my partner was diagnosed and at times still think that this can’t be real. We have teenage children. Feel free to PM me if you have any questions- th initial period I can’t remember after he was diagnosed and can only describe this as trauma. I have found the MND association to be amazing. Hugs back x

Hugs to everyone living with this horrible illness or trying to get unexplained symptoms investigated 🌺

Contact the adult social care department at your local council, they can arrange for an OT to come & assess your home for adaptations & aids, grab rails, stairlifts, shower seats, ramps, anything so he can keep his independence & dignity for as long as possible.

I work with clients with MND and it is just a cruel illness. Have they said what type he has? That will alter the advice I can give

Hi @user1471461791 - I too was diagnosed with MND last year, a few years younger than your husband and with a young family.

The first few months are rough, but you will find a way through.

Let me know if you’d ever like to catch up about anything. There’s so much I’ve learnt over the last 12 months, both about reasons for hope and adapting how to live.

Although the average prognosis is a tad depressing, it is a highly variable disease in terms of progression.

Gentle hugs,
Simon

What a kind offer.

How is your husband now