44, wife with ppms, serious cognitive issues, bed bound and double incontinence. Prognosis is 6 years (neurologist) and a heavy burden to keep from her and the kids. Drink too much, smoke too much and wait for death. Please be bloody realistic, it’s a shit disease. don’t kid yourself that life’s great. It isn’t. Sorry, but keep smiling while you can…I do. Xx
Hi Anon, very, very sorry to hear your wife is so ill with ppms. And terrible for you and all the family.
PPMS like all MS is different for everyone. None of us are kidding ourselves that it’s anything but awful.
Luckily some of us do not have symptoms as aggressive as your wife’s, although we all struggle on a daily basis. Yes we try to keep going and keep smiling. No choice really. And we work hard at keeping each other positive. As I’m sure you know, it’s easy to be isolated with this damned MS… so our friendship on here means a lot to us.
Once again I’m sorry things are so bad for your wife and you. I’m aware there is nothing I can say to improve things for you. I only wish there was.
Best wishes,
Pat x
Hi Anon
Sorry to hear that your wife’s ppms makes her so poorly, it must be extremely hard
for all of you. This is a c**p illness, which affects everyone differently, and yes, life
is hard, but we have no choice, and mentally for me is easier if I try to be positive
rather than negative, but sometimes that is harder than others, in fact, somedays
nigh on impossible.
I wish I had some words of wisdom for you and your family, but I don’t, apart from
letting you know we are all here and send you some (((((((((((hugs)))))))))))) to let
you know I am thinking of you all.
Pam x
Hi Anon Just want to echo what Pam and Pat say - it is a foul illness but we have to get up every day and keep going. There is no other choice. I feel your despair over the plight your wife and also therefore you are in - it’s awful. I hope you have a friend or a family member that you can unburden to. Don’t take all the pain and responsibility on your own shoulders - try to share. You have children, they are worth getting up every day for. I wish I could help, but I’m thinking of you all, Teresa xx
Hi, I`m so sorry to hear how bad things are for you and your wife and family.
But one thing I really must comment on…prognosis of 6 years…what? I believe no-one can give a prognosis on MS. I think it was wrong of your wife`s neuro to say this. It has obviously done you no good to be told this.
Yes, PPMS can be such a cruel tormentor.
Are you her main carer? If so, you are entitled to a carers assessment of your needs. Sounds to me like you really need someone to help you with her care, if you dont already have that.
Waiting for death is so so sad.
luv POllx
I’m like the anon poster - my hubby is 43 - our lovely GP has agreed (off the record) that based on his progression so far he probably has 5 years max left. All the same issues as the first poster - cognitive issues being the hardest to handle when you have 2 small children too. Carer’s assessment? Don’t make me laugh - they tell me because my husband refuses to go to respite that’s it - it’s his choice. What happened to me and the kids’ choice just to have a break? I find it VERY difficult to keep smiling - I do, but that’s for the kids. What do I have to smile about other than them? They gave me carers 4 times a day - then tell me we have to pay £700/month to pay for them - oh, I’ll just not pay the mortgage then, shall I??