Hello my name is julie my partially sighted husband has just been diagnosed with ms after a brain scan in february 2013.He is currently waiting to see a ms neurologist and nurse.We have been together 20 years married for 13 and have two little children.I will be his main carer although he is trying to do as much as he can himself.The main issue at the moment is his mood swings and all the shouting he swings from happy to crying in minutes.He has alot of tremors down rightside of body and has lost bladder control he has uveitis this is also autoimmune.He forgets his childrens names and gets very tierd quickly.Our children have noticed a difference in him he is going down hill fast.He tells me he does not want a wheelchair.But i said if he gets tierd even on short distances he may need one.He wants to try to remain independant but its hard when you have very little vision remaining.He currently works 5 hours a day but this is getting to much for him.
Oh dear, I do feel for you…both and the children.
as your hubby`s diagnosis is new, it is very early days. There will be so many questions going round in both your heads. His partial loss of vision is also draining on his self esteem.
Perhaps you can chase up the ms nurse. I`m sure she will be able to help, by referring you to various services. Maybe some counselling or CBT would help.
It is good that hubby wants to do things for himself, but some things could be too much and this will make him even more stressed.
As for his mobility, I hope he will come round to the idea of a wheelchair, for longer trips out, or the alternative could be nasty, if he has a fall.
The MSS publishes some info for children, to help them understand when a parent has MS. Have a look at their list of leaflets. Maybe there will be something for you too. You are going to need support too. There are groups for carers. try looking at a website for that in your area.
I hope things become a bit easier, but I know it will be tough.
Thanks its nice to talk to someone who understands.I think the doctors at the opthalmology clinic are hoping when he gets some medication some vision will inprove but we are very doubtfull as central vision in both eyes has been gone for about 2 years.He has been in touch with local charity who has helped him use his peripheral vision using eccentric reading this has helped him quite abit.I think his vision loss stumped doctors as they knew he had uveitis and thought this was the reason but always said he should of been able to see better than he could as it looked like the inflammation was undercontrol.Now they know he has ms i think they are thinking he has optic neuritis.I think he may come round to the idea of a wheelchair in time its early days, hopefully he will be able to get something to help him with his moods.He has an appointment early april with hospital not had one for nurses yet, hopefully it will be soon. You are right i had not thought about him falling his right leg seems to have a mind of its own it twists wile walking and gets trapped behind the other leg (strange) it even kicks on its own and muscles look like poping.He is very thin he is 6ft 4 inches and weights 9 stone he trys to put weight on but cannot.I AM REALLY PROUD OF HIM HE REALLY TRYS TO CARRY ON LIKE NORMAL AND WILL FIGHT MS ALL THE WAY.