Forum

scared

Feeling guilty because I’m emotional and scared to death I will loose my hubby he was diagnosed 18 months ago with progressive ms its all changing so quiCk he never moans says just got to get on with it but there questions I want to ask but don’t want to offend any one

Hi Budda,

OK, I’m going to have a go at this because nobody else has (yet), but I’m probably not the best qualified person to answer, because (i) I’m not married or in a relationship, and (ii) I do have MS, but not progressive, and I realise it’s not quite the same.

However, I can say straight away that it’s very rare for anyone to die of any type of MS. Although I can’t promise you it could never ever happen (rare things sometimes do happen), I can promise you the stats say it’s very unlikely.

I can only guess at your questions, but if you are wanting to know what will happen to Hubby, and how soon, I’m afraid that’s the big unknown all of us with MS have to deal with. MS is personal to the individual, in a way few other diseases are, so even a neurologist cannot confidently predict how someone will be affected, or over what timescale. But it’s NOT regarded as a terminal illness. Most people will have a pretty normal lifespan.

I do not think you will offend anyone by asking questions, as long as you’re not assuming we’re all “terminal”, which people can understandably find a bit upsetting - especially when it isn’t true.

If it’s things like sex or toilet problems, I don’t think anyone here would be offended by that, as it won’t be anything we haven’t heard before, if not experienced ourselves!

Hope this helps,

Tina

x

Hi hun.

As Tina has given you good info and advice, I have little to add, except to say that perhaps you may benefit from reading up on the type of MS your hubby has.

People can live to a normal age, even with PPMS.

have you got help at home, to cope with hubby`s needs?

I use Direct Payments to pay for extra care. My hubby is my main carer and really feels the benefit of some time off.

If you`d like to know more about it, you are welcome to PM me.

luv Pollx

Hi Budda

I commented but my post was lost. Tina was right when she said there was very little that would offend. If your hubby has PPMS that section of the forum may be the best for answering questions specific to that type of ms, if it’s something personal for example likes and dislikes, then only he can answer them.

Are your fears related to the illness, his deterioration, his life expectancy, happiness, general needs or your ability to cope either with his physical or emotional needs? Remember he’ll be worried about you too, and might want you to bring in some kind of care to help you but not want to say anything in case he upsets you. There’s no shame in doing as Poll suggested and getting help. In fact if you get run down your situation will become worse.

Please let us help if we can, and the doctors and nurses will help too, they’re there for the family as well as the patient. Maybe you can organize some quiet time with your hubby when you’re both relaxed and you can both talk as he probably has as many questions as you.

Take care and please let us know how you get on, and let us help as the advice you get here comes from experience not text books. Someone will have had similar problems and there are some really nice knowledgeable people here.

Cath x

Hi budda i understand how you feel all to well my husband has been diagnosed with multiple sclerosis has probibly had it years we were told by neurologist and has alot of scaring to brain and spine.My husband is so thin before diagnosis we thought he had cancer he is under 9stone and over 6ft tall.We still dont know what type he has and has alot of symptoms that do not go away.We have 2 little children and things get really hard.Try not to get too down do you have children?if you ever want to talk and let off some steam feel free to send a message .Keep your chin up xxx julie