Overwhelmed Partner of MND sufferer

[Lynne K]

Hi Louise, sorry about your lovely husband’s diagnosis. It is a dreadful shock and destroys our future plans. I was 63 when diagnosed, three and a half years ago. I could have been diagnosis the year beforehand but the first neurologist that I saw didn’t manage that. We had planned lots more hillwalking and in foreign parts when we retired.

I’m still, just about able to wobble around indoors with my walker but it’s getting harder. I won’t bore you with my other symptoms.

I hope that your husband gets all the professional help that he needs. They don’t dwell on negative outcomes in my experience. They have all been helpful and friendly.

I hope they your husbands deterioration slows down and you can build some lovely memories together. Love Lynne x

[Positive vibes]

Hello Louise

Really sorry to read this, our family too, are trying to come to terms with my Dad's recent diagnosis (ALS upper arms). He is probably taking it far better than we are - he is 82 though, and has seen and experienced an awful lot, so he isn't phased by it.

I think the fact that he is showing us a positive way to cope, helps us to cope, if that makes sense? He isn't that angry/grieving (or he is hiding this), just accepting and 'getting on with it'. I am doing my best to steer him on what he can still do, rather than dwelling on what he can't, and we are aiming to have as many experiences/trips out, and make memories so he doesn't just see me or other family turn up on medical issues only.

Although the guide we ordered from here (the connect contact area), doesn't give a long expectancy, no-one really knows for sure. I am sure a positive attitude will help him (and us), and we aim to wring out any fun or humour (even if it's dark humour) along the way.... sending you all a virtual hug.

[richard]

Mole41 Welcome to the group no one really wants to be in. Here we can laugh, cry, shout and scream. We have all done it. You can also ask questions and share concerns. We are all here for each other.

Richard

[Bowler]

Hi Louise it’s a bugger isn’t it. So many things buzzing around your heads.

I cared for my Ann for 5 years. I found what worked for me was building good relationships with the critical medics. For me that was OT, Speech and Language and the hospice. Please don’t be frightened by the word hospice. They are not just about end of life, they are experts in pain management and can offer so much more. All 3 provided the most excellent help. Get hold of their direct number.

The one thing I missed out on and regret now is the support available from my local MND branch. They too have so much to offer should you wish to use them.

There is also loads of helpful advice on the main MND page should you prefer to read in your own time.

Caring is without doubt physically and mentally demanding however now you have found the forum you never need be alone.

Take Care..Phil

[Barry52]

Hello Louise and welcome.

Sorry to hear about your partner but now you have reached out to this group I’m sure you will find support and advice. You mentioned his speech and if he still has some verbal communication then I suggest you investigate voice banking. A number of the forum members use a speech app, including me. Even if the user has limited speech the voice banking team can often repair the voice so that when using the app it recreates the person’s voice. Use the search function and type in voice banking for numerous discussions on the subject.

Best wishes.

[Deb]

Hi Louise and a warm welcome to the forum,

I am so sorry for your lovely partners diagnosis... .Its not surprising you feel overwhelmed. Its such a shock and there is so much to take on board. I have found the support from the MND team to be sensitive and caring but in the early days I was very resistant to help... probably a bit of denial. They obviously recognised this and have always been patient and easy to contact.

My fab husband is my carer and we try to take one day at a time. However , unfortunately with MND you do need to think ahead sometimes because practical adaptations in the home take time to organise. Although we all have things in common people progress at different rates and everyone's journey is different. When I was first diagnosed and was asking questions the MND nurse said to me... if I put everyone with MND in separate rooms they would all differ.

Your partner is fortunate to have you on his side... take care of yourself too,
Love Debbie x

[Mole41]

Thank you so much everyone for your lovely kind words, I actually don't feel so alone now knowing you are all here makes such a difference glad to be part of this group and thank you for the warm welcome xx