I just had to come here to see if anyone else who cares for their loved one with MS is feeling like they are slowly losing them to the illness.
My husband was diagnosed in 2003 with Primary progressive MS. He is more or less bedbound and his cognitive issues have increased. By that I mean he gets very confused and can mixup reality with what he is watching on the TV. His memory is not good and if you didnt know he had MS you would think he has dementia but it is the lesions.
I used to be able to phone him or him me while I am at work but I am noticing things are getting harder for him to communicate.
He has tremors which means he has to be fed but he can still hold his sports bottle for a drink.
He has The possum system fitted next to his bed which makes turning on the TV so much easier. He has now been registered partially sighted and this is another thing taken away from him.
I just feel very sad when I think of the man I met and married and now 36 years together this is taking him away from me.
Hi Caz, I’m very saddened to read your post. I can’t think of anything to say but I wanted you to know that I’m thinking of you and your husband. I hope he knows how lucky he is. Yours, Anthony
I know exactly how you feel .My hubby became ill in Nov 2017 and diagnosed ppms Dec 17 .He now can hardly walk .his speech is slurred and his cognitive test scored him at 13 /30 .Consultants dont know why he is progressing so rapidly .I have lost the person i knew in the space of 2 months.
Reading your post it was as if I was writing it about my husband, he has had primary progressive MS since 1993 and his eyesight is not good , his eyes keep moving the whole time so he isn’t able to concentrate on anything or anybody, he also has cognitive problems in mixing up TV programmes with reality, and thinking we have more houses than our only home and where is the money from these houses! other times he is completely lucid. He is also very deaf which dates back to childhood.
He also has to be fed most of the time due to tremors on his left side, his right side is almost numb and does not have much circulation he also has a sports bottle for his drinks, which now has a small light attached that flashes twice an hour to remind him to drink, we use hoists to move him about which are a great invention but very time consuming.
And yes I do miss the person he once was, we celebrated our 50th wedding anniversary last year and it was all supposed to be so different
I see what you mean we are writing as if about the same person.
My husband is 55 and for a young man who was very active this is terrible for him. Although he is a very positive person and never gets down I guess he leaves that part to me.
I have now brought him a doro secure 580 phone so I can phone him during the day and it automatically goes to hands free and connects so I can speak to him. He doesn’t even have to touch the phone because if he did he would disconnect me accidently. It will block all incoming calls except mine so no cold callers.
We are using it for the first time this week and sometimes he has the TV up so loud I can hear what he is watching but he still cant hear me saying HELLO although all in my office can… LoL.
I have the community opticians coming next month and I will enquire about having him tested for hearing issues as I am sure he must be losing his hearing by turning it up so loud.
There was an appointment made for him last year to see a neuropsychologist for a 2 hour assessment at a hospital an hour away. So in total he would be out 4 hours making him very tired. I had to cancel it as they don’t do mornings and no home visits. Ridiculous especially when some patients a housebound.
Like you we use ceiling hoists since December last year and a godsend prior to that I was lifting him and now had a knee replacement due to wear and tear.
I know the feeling all too well, our 46th W/A is coming up in about a weeks time and my wife is definitely no longer the girl I married.
I’m finding it increasingly difficult to even like her any more, I have to keep reminding myself that it’s only the MS that’s the problem, it helps for a while.
We’ve not progressed as far as hoists just yet, but that (or some other lifting solution) can’t be far away.
I make sure that I escape every afternoon for a walk for couple of hours, and come back ready for the next round of problems. It keeps me mostly sane.