My husband was diagnosed with MS 10 years ago with rrms. We work together. He had lemtrada 2019/20. He had thyroid problems Nov 2021 which is now being treated but since then he seems much more confused about stuff and he struggles to plan. We run a specialist construction company that works all over the UK. I don’t know what to do. Our clients are starting to notice that he’s not as “on the ball” as he was. When I try to talk to him about it he blames me for being unreasonable and hangs up on the phone. I have tried to broach the subject because I think it’s like the MS fog. Does anyone have some practical tips to help? He isn’t by nature a writer so alot of apps or paper things won’t work if you see what I mean or even just how I talk to him about it. He is a good man but quite old school. He isn’t really a talker and seems to see the MS as a weakness to be overcome and ignored. I’m sorry this is wombly. I just would like some strategies to help him. What helped you the most? Thank you
Sorry, to hear this. Such a stressful situation. Not sure what to suggest. But has he got an MS nurse? Could you contact them to ask for advice? Sorry not today amore helpful. X
This is really difficult. Cognitive problems in MS are not talked about nearly enough. As I understand it, a fairly low proportion of MSers are working full time 10 years on from dx and my guess is that cognitive issues have at least as much to do with this as mobility or other problems. That was certainly the case for me. I think that a demanding job with exacting customers will cast a particularly pitiless light on any cognitive issues, and it sounds as though that is what is happening here. That is very worrying for you, and probably just as painful and worrying for your husband, even if he won’t admit it - maybe particularly because he won’t admit it. At the risk of sounding sexist, I do think that these things are particularly brutal on men - particularly the high-achieving, old-school type. I am sorry that you are both struggling. I suspect that he can see as well as you can which way the wind is blowing, but that doesn’t make it any easier.
The one thing I would suggest is to think first about possible alternative explanations for the cognitive problems before automatically blaming MS.
Poor sleep, for instance, or depression, or both. Those are issues that can be dealt with much more easily than irreversible MS cognitive decline.
Hello Rosie
One thing that just struck me is medication. The other is thyroid levels.
What drug treatments are your husband on? I know we’ve mentioned thyroid before, some of the anti-thyroid drugs could have an effect on mental state. Possibly making him a bit less ‘sharp’ or slowing down thought processes. Or for example, other drugs like Amitriptyline have effects that can last well into the day after taking them.
If you were to get together a list of the drugs he’s taking and look at their side effects, something might immediately jump out as affecting his mental acuity. If not, maybe you could talk to a pharmacist about combinations of drugs?
The other thing is to make sure the doctors have actually got his thyroid medication dosage quite right. I’m thinking this in part because I do understand the balance of thyroid hormone can easily affect thought process. Supposing his thyroxine is actually less than it should be (ie a bit underactive rather than over), that could affect his thinking as he’s not getting the right level of stimulus for his heart (thus oxygen levels) or other organs. Alternatively, still being overactive can make a person extremely tired. It’s caused in part by the overactivity affecting sleep and also making the heart for eg overwork.
Thyroxine is the hormone that directly affects many other organs and bodily systems. Have a look at Thyroid Gland Overview: What to Know About This Endocrine-Hormone Powerhouse for a brief synopsis of what it does. It can of course effect your nervous system.
I can easily understand why your husband becomes easily irritated by the subject too. If he’s aware of his brain being a bit slow, it would probably scare the heck out of him. This in turn can make a person grouchy to say the least. Fear can cause a knee jerk response of extreme irritation.
Just my thoughts.
Sue
Hi Rosie
I’m in a similar situation to you, my hubby has PPMS diagnosed 5 years ago and he has significant cognitive issues, he has been on levothyroxine for about 20 years. He now has to have B12 injections also, I feel all this is contributing to his cognitive problems. Last week I had a call to my work from one of my neighbours saying my husband was outside in his PJ’s trying to open next door’s car with the house keys. He was very sleepy that morning when I left for work the MS nurse seems to think he was under the weather and this could have been the cause. I asked if he remembers going out he said he did but he didn’t know why. He had put his trainers on and locked the front door, seems very strange. He had fallen over and hurt his back. I called our GP and she came out and ran a few tests, urine etc and everything was normal, but since then he’s struggling to walk. He’s getting a bit better now but is still tired and struggling. Hopefully when he starts the B12 jabs this may improve things for him. I feel he has been neglected, he’s not on any medication and to be honest there isn’t much support either. He has carers coming for an hour a day 5 days a week, but they can’t offer more as there is a shortage of carers and a waiting list. I had to take time off work last week to be home with him as he was struggling, I don’t mind at all but it’s heartbreaking seeing him like this. Maybe if the carer’s allowance would be more then it would be easier to stay home but unfortunately there are bills to pay and I have to work. I feel stressed out most of the time, and work isn’t
the easiest place as it’s a busy Solicitors office. Sorry for the moan!
I can relate to all of this. My husband has spms, diagnosed 16years ago now. Not really worked since due to company policy to put him on permanent disability, thankfully with 75% of his salary.
However he experienced many occasiobs in meeting where he contradicted himself and confused pppl who questioned and thats how he realised he could no longer continue with his job.
He like the other men mentioned here is driven, perfectionist and relentless in his work ethic. As a contracts manager, memory and cognitive function was crucial to his role.
He gets v frustrated, and often when doing even simple things nowadays, gets it completely wrong but is absolutely convinced its correct and its me who is wrong. Ive learned to leave him to his own devices otherwise it’s not worth the stress!
Is v difficult but different for you, as you will have clients questioning performance and where you are offering a business this could result in serious consequences.
If you have a ms consultant is this something you could discuss at next appointment? Ir as other’s hsve suggested ms nurse? Does he still drive? Cognitive function can impact on this massively and my husband no longer drives.
Cognitive issues do appear to affect men more than women in my experience.