Any advice welcome - very new to all of this

[Kjen86]

Hello,

My husband has been diagnosed with MND (well no one will write it down in pen yet but he’s on the medication and I think it’s becoming more obvious). He has widespread fasciculations, cramps, some weight loss and now his breathing seems to be involved (morning headaches, gets out of breath quickly). He’s had an EMG that showed Denervation and his MRI and LP was clear.

I suppose the question I have is does anyone have any experience of early respiratory issues in ALS? He can still move and get around totally fine. We have a toddler who he can still carry and play with fine. Although he says he feels generally much more fatigued and achey. Like he's done a massive workout at the gym.

We have to see the respiratory team at the hospital in the next couple of weeks as his FVC has gone down by 20% both sitting and lying down last time we went to clinic. I suspect they will start him on a NIV. And then off to Kings college at the end of August to visit the centre there. What are the NIV units like? Easy to move around and what seems like a hugely selfish question, how loud are they?

Any help advice would be much appreciated

Thanks,
K

[Ellie]

A warm welcome to you K, but sorry you've had to join the Forum.

I presume the med your husband is taking riluzole? When you say "clinic", is that a specialist MND Clinic?

A NIV machine is not noisy, so it shouldn't keep you awake at night.

But they aren't exactly designed to pop into a handbag - typically one weighs maybe 2.5kg and fit into a backpack-sized carrier. If you're out and about, clip on or extra batteries are available to lengthen time away from a socket.

Your husband should get relief from those morning headaches using NIV, as well as having more energy. He doesn't have to wait until the end of August for one, does he?

Take care.

Love Ellie.

[Gillette]

Hi K.

Welcome to the forum but sorry that your husband has been diagnosed with MND. It's a warm and friendly community on here where you will find help and support freely available.

I'm afraid I can't help with your questions about NIV, but wanted to say 'hi'.

All the best, and welcoming hugs. ((((()))))

[Terry]

Hi K and welcome to the forum;

Sorry to hear of your husbands problems. It sounds like your husband NEEDS a NIV now over night time. It should greatly increase his quality of life and energy levels during the day time and he probably won't need it in the day at the moment time. Please push things along if you can.

Best wishes, Terry

[shrew]

hi n welcome, respiratory an early symptom for my Husband too. He was diagnosed last July after being sent to respiratory, he had the early morning headaches, hands weak etc, he uses a nippy during night n has 45 min to 1 hr mid afternoon nap with it on too

[Kjen86]

Thanks so much for your reply’s and welcomes. It taken me a while to write on here I think the shock has started to pass and the adjustment to this just being the way things are has started to settle.

Yes he’s being seen regularly at an MND clinic at the Royal. Being referred onto kings for a 2nd opinion but we are aware that’s just to confirm. Thanks Terry, the clinic seem fairly on it and he had all the more detailed respiratory tests last week and we go back for a plan of action and probably a NIV on Wednesday so we are getting somewhere. Great to know about the NIV machines, I’ve got tickets to the Grand Prix boomed for him and was really keen to know that he could take it with him if needs be so thanks for that.

Shrew can I ask how things have changed for your husband since diagnosis? I know that everyone is individual with this but I suppose I’m
Always looking for similar stories so I can try get my head around everything

[shrew]

hi since using nippy he doesnt get early morning headaches. he took to it straight away. he only walks really indoors, we use a wheelchair outside. we have flown twice since diagnosis. his arms are weaker and his head heavy. we try and carry on as best we can.

[Deb]

Hi kjen86 and a warm welcome to our forum,

I am so sorry for your husband's condition... it's such a shock to hear the doctors suspicions and everything seems so overwhelming. The forum is a great place for advice and support and I think it takes a while for most of us to make that first post so well done for doing so.

I have no experience of NIVs but I wanted to welcome you. Obviously a diagnosis of MND is shocking but I did find that when it was confirmed I had alot of help, care and support from outside agencies to make life easier.

Take care of each other and be gentle on yourself,
Love Debbie x

[Lynne K]

Hi Kjen, sorry about your husbands diagnosis. Great that you found this forum and had the courage to join. As others have said it's a friendly helpful place to come, share, ask questions and learn a bit about equipment etc Getting a diagnosis is an enormous shock. I'm glad that the initial shock has passed and your husband is hooked up with an MND clinic. I too don't know about NIVs. I hope that your husband gets a NIV at his up and coming clinic meeting and it gives him more energy. Lynne