I feel so helpless

[Puddy]

My husband, Nigel, was crying this morning. So far, it’s only his right leg that’s really affected, making walking almost impossible. He can’t get out of a chair, turn over in bed, or get out of bed, without really struggling.

Because he doesn’t have all the symptoms, he thinks he’s been misdiagnosed, although I’m pretty sure his voice is quieter and his speech a bit slurred.

He’s always loved doing a bit of DIY, but now he’s frustrated that he cant do anything, because of balance.

I feel so helpless and hopeless, and I’m so heartbroken for him.

Admin - I think maybe I should’ve put this in the carers’ section? If so, please move it. Thanks.

[Lynne K]

Hi Puddy, I'm sorry about Nigel's symptoms and distress. We all progress differently and have a varied collection of symptoms. It sounds like it's time to speak with Nigel's OT etc about getting him something that will help. If he still has upper body strength then maybe something overhead to pull on might help. Does he have a bed guard? Mine helps me get out of bed but I still have use of my legs. It may be that there's something different that would help. I'm by no means expert regarding this.

It must be very difficult for you. I hope that the current problem is resolved quickly. Take care, Lynne

[Puddy]

Thanks Lynne. Living in Spain we don't have an OT. We've been given loads of forms to fill in by a social worker. Apparently we take it to an office, where it will be graded as to its severity. This we'll do next week. x

[Deb]

Hi Puddy,

I am so sorry you are feeling helpless and heartbroken, although it is completely understandable. Nigel's diagnosis is still very recent so you must be both feeling very shocked and overwhelmed. It is very hard to come to terms with and it is hard to watch your loved one struggle. I am sure you have been told that MND progresses at different rates so your husband could stay as he is for some time, although I was told it is best to be prepared.

My MND effects my legs, mainly so I would say at this stage it is important to avoid falls and if you can, use aids to help. I dont practice what I preach however, as I am recovering from my latest fall !, I have learnt my lesson this time and am using my wheelchair and being extra careful!

I hope you get the OT support you need in Spain. I dont know if this would help you but when we had our apartment in Spain it was cheaper to buy some mobility aids off Amazon and have them delivered than buy there. As a resident, though you will qualify for healthcare there.

Sending you big hugs and wishing you strength in these very hard initial days,

Love Debbie x

[Lynne K]

Aha, Puddy. I didn't know that you were in Spain and what goes on there in terms of health needs like MND. Good luck for getting a quick response to the forms that you are handing in next week. I'll be watching for the outcome on here. Lynne

[Puddy]

Thanks Deb. The health care is excellent here. Take care of yourself xx

[Puddy]

Thanks Lynne. You take care, too. Xx

[panniertank]

Hi Puddy. I am sorry to hear of your husband's diagnosis. It is life changing for both of you and a recent diagnosis so it takes time to come to terms with it. You say you feel helpless and it is understandable to have all kinds of negative emotions with such a devestating diagnosis. But I am sure it is very reassuring for your husband to have a partner. I don't mean to talk about myself but I hope it helps you to understand that I live alone without a partner and I am terrified of my future feeling so isolated and alone. I think it is the greatest thing any human being can do to support and "be there" for another human being. I am sure you will both be able to get out and about together and live your lives together and it will not just be about MND. It is understandable that he thinks he has been mis-diagnosed;-I am the same, often in denial but I have read that about 10% of patients get re-diagnosed and my neurologist stated that no medical diagnosis is100% and MND can take several years to confirm!!
Take care and I am sure you are more helpful than you realise.

[Puddy]

Thanks Panniertank. I'm so sorry you are alone with this. Yes, at least we have each other and must be grateful for that. xx