New to this…

[Lindsay67]

Hello, I’m Lindsay, caring for my husband diagnosed officially in February but more than likely to have had mnd for a year to 18th mths or even more. We had several red herrings until finally seen by neurologist. I’m finding it all a bit overwhelming and have now given up work as want to be around while my husband still able to just about walk albeit not for long. I’m not sure what to expect with stages or even where we are in the scale of things. I know the general statistics advised by dr and and MNDA have given us so much info. But realistically I guess I want to know from the people dealing with it everyday. My husband has als, is on NIV, no bulbar symptoms yet. Fatigue and breathing is the biggest issue. Waiting for wheelchair so we can get out for longer periods.

contemplating a trip possibly cruise. Should we? What experience has anybody had? Insurance?

so many questions!

[PeterPan]

So sorry you are here Lindsay67 but think you will get good advice from the forum members. There is so much to think about in the early months. I don’t have any experience of cruises after diagnosis but I’m sure others have. Best wishes

[Ellie]

A warm welcome to the forum Lindsay, sorry about your husband's diagnosis.

... contemplating a trip possibly cruise. Should we? What experience has anybody had? Insurance?

Yes, you should think of travelling! And cruises are popular for people with limited mobility and no all cruises involve flying to a departure port.

Different cruise companies have different rules, including policy on NIV use, so it would be important to check that one out early on in the process - does your husband only use NIV in bed?

Allclear insurance is usually the company people recommend.

If you use the search box, you'll find threads on both cruising/cruise and insurance.

Love Ellie.

[JamesW]

Hello Lindsay

I’m so sorry that you find yourself here 😔

As Ellie has said have a look to see what you can find on cruises that’s already been posted …..but as someone who has been on a cruise or two please feel free to drop me a message 👍

James x

[shelly21]

Lindsay67 hi and firstly I'm sorry you and your husband are here.

So the first few months are kind of hectic. Lots of departments etc will see you both like speech and language and dietician.

You may want to read about a peg or rig. They are feeding tubes. They basically are there for when/if swallow gets poor. Basically when breathing weakness is involved they have to decide how best the procedure can be carried out.

But some decide not to have them some do.

I'm sure we will all be on hand to help you both xx

[denise]

Hi Lindsey
I'm sorry about the diagnosis but glad you have found us. I also look after my husband.

You will find lots of lovely people here to share your thoughts and problems with. There isn't much we don't discuss.

Love and hugs
Denise xxx

[Tabbycat]

Lindsay67 welcome to the forum, it's a great source of information, support and good humour.

[Lindsay67]

Thanks everyone. Tbh feeling very low this week. Can’t snap out of it… need a good slap 👋 😂 probably. I feel we should get out everyday, otherwise we both go nuts but it’s like Groundhog Day. Same go to coffee somewhere…. Am I being selfish?! Absolutely. But can’t help it. Recovering from uti so probably doesn’t help.

[Ellie]

Tbh feeling very low this week.

Sheesh Lindsay, don't be so hard on yourself 😉 MND is the illness which Neurologists themselves would most hate to get...

And that UTI isn't helping your mood.

Love Ellie 🤗😘