Having had a read of a few posts over the last couple of days I have finally decided to post for myself, mainly for advice/support/sanity/?.
I used to be a very positive and hopeful person, however this has rapidly eroded away, and i am finding it difficult to cope and see any wins with this cruel disease.
I remember 6 years ago the day my partner was diagnosed after having a “relapse” out of the blue 4 months after her 30th birthday. She was taken to hospital with Mydriasis and uncoordinated walking. Initial diagnosis was a bleed on the brain but after more investigation she was diagnosed with M.S. I actually remember being relieved that it wasn’t something terminal and thought, this isn’t too bad, boy how wrong was I!
She was put on Tysabri for 3 years and this is awesome, she was able to return to work as a mental health nurse and retained her independence but then disaster! she was taken off Tysabri because she got an infusion rash.
Neuro put her on Gilenya (which she had 3 relapses on) she had to quit work, developed fairly significant cognitive impairment to the point where she can’t really read or write anymore and struggles to work the remote control. They took her off this after a year.
Neurologist put her back on Tysabri, but give her Piriton at the same time. It was by that time too late, a year back on Tysabri, she got an MRI and lumbar puncture and it’s meerly stopping the relapses but no improvements, they say her M.S is stable and the damage is/was cause by brain atrophy.
We feel very let down by the Neurologist, despite our opposition I really feel he decided my partner’s path for her rather than helping her decide herself. You put your trust in these people to know better. At no time was cognitive impairment even mentioned, we didn’t even know it was a possibility.
I would urge people starting this to question, question and question again their M.S care team, don’t just take what they say as gospel. But then hindsight is a wonderful thing. I know they are overworked but I always thought at times they were just not listening to us.
Anyways fast forward 6 years from diagnosis and I’ve had to quit work to look after my partner, they did offer carer’s but said it would be for 3 times a day, 30 mins a time and it would probably cost a couple of hundred pounds a month. My partner really needs someone here all the time otherwise she sits alone (which breaks my heart) watching Friends all day and is prone to falling occasionally going to the loo.
Family are a joke, she has 2 brothers, one visits sporadically, 1 hasn’t seen her in 2 years as he doesn’t like seeing her like this and her mum who did move in initially to help and was then very resistant to leave once my partner was back on her feet visits for around an hour on a Saturday. I phoned her the other day to ask for help, she pretty much told me I had made my bed. (she blames me for her having to leave when partner was back on her feet.)
This last week has been particularly tough, I started having panic attacks, thinking I was losing my partner, had to go to the Drs who gave me beta-blockers. I’m just so lost and starting to feel like i’m failing.
I really need to help my partner with her cognitive impairment, it’s tough because she doesn’t even realise she has an issue, the neuro said this was common. I need more info on CRT or something and was hoping other people would have ideas. I have done the usual things like diaries and even got an Amazon Echo hoping that would help as she asks about appointments at least 5 times a day but she keeps forgetting the Echo’s name (Alexa)
I need to break the cycle of her sitting all day watching tv although she’s very resistant.