Hello I'm new. Any guidance would be really appreciated please

Caring for someone with MS
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I just wanted to say hello if that’s okay. I am very new to MS and have never looked at forums of any kind. My hubby was given his RRMS diagnosis 4 days ago. Initially, he didn’t speak, until I took him to tell his very anxious parents. He seems to be informing everyone now, well everyone bar his brother who doesn’t seem interested.

I want to help him the best way I can through this, but I don’t know how. I have offered him and ear and told him that I am here if he wants to talk. I have said that I will help him with treatments and go to any appointments with him. I keep saying that I will be with him each step of the way.

However, when friends ask me about it or check in with me on how I am doing he walks out the room. I ask if it is upsetting him, which he says no, but I don’t want him to think I ever talk about it without him or ‘behind his back’. Unfortunately i am better at the science and describing things which our friends know.
It also allows me to listen to the…well my friend/mum/neighbour has it and they were in a wheelchair within months but they still get about stories, which really are not helpful. I am trying to get my hubby who is a constant worrier, to not think of what can happen, and focus on what we can control and the here and now, but all the ‘helpful’ stories are taking there toll.

What sort of questions should we be asking to the neurologist/MS nurses?

I feel terrible that I sometime feel overwhelmed but I push this aside and am trying my best to help him. Is this normal? I don’t know what the new normal is.

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Sade41,

I am so sorry that you feel so bad, this is one of the nasty side effects that many people do not recognise. The impact on family and friends can be enormous. The first time I saw my dad cry was when I got my diagnosis.

Both of you will be facing many new “normals”

It sounds like your husband may be doing some “blokey” internalising. If you start to imagine what is going through his mind you too might get overwhelmed. In my opinion just be there when he needs you, don’t smother him, and don’t be surprised if he does not have enough consideration for how you are feeling right now. You are both part of the same team and need to support eachother. You also need to be kind to yourself. Share how you are feeling with a close friend. You can then be in a better position to provide support for him. I wish you both all the best.
Mick

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Hello Sade

Welcome to the forum. I know you must be devastated for both your husband and yourself, so being made welcome at a site like this isn’t always the positive thing it’s meant as!!

One of the problems you are encountering and will probably continue to come up against is that women a) talk more, and b) are generally more comfortable and confident discussing health. Massive generalisation I know, but honestly I think it’s true in most cases.

MS is his diagnosis, that’s true, and it may be that he wants to be dealing with it in his own way. But what he might not have realised (yet), and you probably have, is that the diagnosis affects you both. MS has moved into your relationship and your family, so you need to get your head around it and probably to talk about it just as much as he.

I’ve just seen Micks post - amazingly he’s come to the same conclusion as me, and he’s a man!! Some men have the ability (eventually) to get in touch with their inner vulnerable nature and to see the impact their health has on the wider family. But then Mick has had MS for a lot of years. Your husband has had the diagnosis for a few days. Give him some time.

What you might need to do for a while is to take a bit of a step back. Let your husband ‘own’ the disease for a while. Ask him what he needs you to do, rather than assume you should be learning everything possible and then telling him what you’ve learned.

(This doesn’t mean stop learning about MS, or talking about your reaction to it, just to let him lead the way a bit.)

What you ought to get from the MS nurse and neurologist is some thoughts about disease modifying drugs (DMDs). These are designed to reduce the number and severity of relapses. In reducing relapses, future disability is also reduced. The vast number of DMD’s are suitable only for people with the relapsing remitting type of MS. You may need to ask the MS nurse if that is what your husbands type of MS is.

Meanwhile, do talk to your friends and family, but try not to listen to stories about other peoples poor physical state and disability. Your husband may never reach a serious level of disability. He has the advantage of being diagnosed now, when there are more drug treatments and better outcomes than when say, Mick or I were diagnosed.

Sue

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What I like to tell people is that I had MS for 40 years before it caused me to quit work, and I still walk around most of the time under my own steam. I take a walking stick when I’m out and about, just in case, but that’s mostly so that people don’t think I’m drunk if I wobble. i still basically live alone and deal with my own house.

It’s natural to think of the worst-case scenarios at first, but what you both need to look at is how this is actually physically affecting him right now. Has he had to quit working or reduce his hours? Or does he just need to slow a bit and take more rest breaks?

For myself, I prefer people to discuss my MS openly but in a matter-of-fact way that relates to today. I don’t want people hovering over me or talking about “when” I need a wheelchair, “when” I can’t live alone, “when” I need to go in a nursing home. There is no “when” with MS; it’s always an “if”. There are so many directions the disease can take, and there’s no way of really knowing until it happens.

Find a close friend to confide in. You’re entitled to cry and to rant. Be aware of what could happen down the road, but don’t dwell on it. My mother was with me when I got my diagnosis, and she went into the bathroom to have a quick cry alone. When I told my son, he walked away until he could get the tears under control. When I told my daughter, in their presence, I warned them all that today was the last day they could cry about it, and for the most part they’ve listened.

Life is beautiful. It’s different now than it was a few years ago, but then again I’m also older than I was then. Many of the lifestyle changes I’ve made would have happened even without the MS, and that’s what I focus on.

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Brilliant NorasMom just brilliant
M

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Thank you so much. Already it has given me an appreciation of life. I am trying to change my lifestyle as I needed that kick in the rear. But also it seems to have brought us together as a family. We are walking together, and hopefully in the future we will be able to enjoy time together. I am going to be working in the family businesses and that will allow me to be there if he ever needs me.

I was thankful that no one has had that sort of reaction. Tears are not something that his family do. I think we had all been prepared for it. It was a long time coming but that time has allowed everyone to accept it when it was given to us.

Sorry I don’t think I am making much sense.

Thank you for your reply and advice. It means the world.
Sxx

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Thank you Sue, it is lovely to have somewhere to ask questions and just be. I have stopped listening to other stories and am going to just focus on my hubby’s journey. I’m sure eventually he will start to share and once we speak to the nurse and start treatment he will adjust.

He was given a relapsing remitting diagnosis at the meeting so I am hoping that the drugs will stabilize it for now. He is fortunate to still be able to function as he always did. The first obstacle will be his next medical in November. He has to pass one to do his job. But I handed my notice in and will help him run both our and his dad’s businesses so not a lot will change.

We are exercising as a family and that will help I hope. If he ever has a decline in ability I am sure that we will adapt and we will get on with it as best as we can.

Thank you for you help
Sxx

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Thank you. I think his is internalising and just getting on with life in general. He has just said that we will see what the treatment brings and then leaves it at that.
I mentioned to him that I had read the leaflet that was sent about it. He said he wasn’t going to read it that was ‘my job’. Maybe that is what he needs from me. To explain all the medical side to him.

Thank you for taking the time to reply.
Sxx

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It sounds like you’re both handling things very well. Yes, it’s a sucker punch to the chest when you get that diagnosis, even when you’re expecting it, but then when it settles in you realize that nothing has actually changed. You might need to slow down a bit or take a new medication, but every day life continues pretty much they way it always has.

Please keep us posted. You have a lot to offer the forum.

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Hello again Sade

It sounds like the two of you have a great partnership. Together you’ll get past the diagnosis, start a new drug regimen and move on.

Honestly there is no reason why your husband won’t stay completely able bodied for years to come. Possibly forever. There are so many new drugs available for people with relapsing remitting (RR)MS, and more coming year on year.

The point of a disease modifying drug (DMD) is to reduce the number and severity of relapses. A good drug can make it possible to just have no further relapses and thus no more attacks on the nerves which equates to no disability.

You’ll (he will, with your help), have to discuss DMDs with the MS nurse. For a head start, have a look at MS Decisions aid | MS Trust You would normally be offered a choice of several drugs. What is important is to weigh up the benefits (potential reduction in relapse rate) versus the risks (possible side effects).

If you have a look at the website, perhaps show your husband, you might suggest he thinks about joining an MS forum. Either this one, or maybe another, he could look at All the latest on Shift.ms perhaps.

Good luck. Let us know if you need further help, support or information.

Sue

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so ok just say on the 18th he didnt have the lable but on the 19th he has. On the 18th he was your husband now he is your husband with a lable MS.

thats a whole lot of stuff for him to swallow.

i find men dont take things the same way as we do. I would step back you have told him you will be there for him. dont change the way you deal with him, carry on as you did before the lable.

His brother is probably scared he has more likely read it can be hereditary so what he doesnt know about he cant get if that makes sense.

How can your hubby hear what your friends are saying to you about things? I would just ask your friends not to ask things are the same as they always were. Let him just get over it. DONT listen to the well my friend mum blah blah has it because believe me MS is what we call a SNOWFLAKE disease everyone is A DIFFERENT.

No one has my MS they may have PPMS but they dont have my PPMS.

just be there for him. you have changes ahead for yourself too, so just be kind to yourself as well. You are bound to feel overwhelmed ok. xxx

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Hi there, I’m new too!

My partner was diagnosed in December.

The overwhelming feeling will go, that urgency to understand everything, read everything, try to know everything.

My other half is the most relaxed person on the planet though, which is probably why things seem like … normal? I know everyone’s MS journey is different, but despite the daily Tecfidera, you’d have no idea he has the disease. We’re lucky, so far. I know things might change, but we’ll deal with that if and when it happens.

It’s ok to go with optimism. This disease is so eminently treatable now. I’m so sorry for those who came before and didn’t have access to these new medications… we are really so grateful.

My other half’s way of dealing is not through talking about it, and that’s fine. I’m a talker :grin: I know him well enough that if in the future I had to be more authoritative then he’d accept that, but for now life goes on.

It’s really amazing how normal it becomes once the shock has worn off. But it’ll take time.

Sending you both love and happy thoughts x