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DH just been diagnosed with MS(12 Posts)
I was diagnosed with PPMS last year, on my 60th birthday. It was devastating - but also in a mad way, my husband and I were pleased to know what actually was wrong with me after about two years of being ignored by the medics who never joined the dots - each dept doing their own thing.
It can be very frustrating when friends/colleagues/aquaintences seem to think that there is only the relapse/remission sort of MS and that someone they know with MS has coped really well. PPMS is very different and the symptoms and the speed of deterioration so variable, we have decided it is pointless worrying about the future when it's impossible to know what will happen.
I have found it has taken me a long time to accept what I can and cannot do now and how each day varies so much in terms of how I feel physically and how it can limit what I aim to do that day. It has been/is also difficult for me to accept that I sometimes need help and support (literally and metaphorically!) and I get worked up, angry and tearful about it sometimes. I used to be so strong and healthy, fiecely outgoing and independent and I find it so hard to accept my limitations now and to have to let people help me.
I think it is very tough on any partner of someone diagnosed with PPMS. I know my husband feels he cannot let me see how upset he is and that he feels useless as he is unable to help me as I try to come to terms with my limitations now. But whatever he might think, I find that he is the most enormous help in every possible way although I worry that I maybe lean on him too much but I am aware that he needs to be allowed to do whatever makes him feel better. If it sometimes means he is oversolicitous and over watchful then that is a small price for me to put up with if it's his way of dealing with things.
I have come to realise that it really is important that we talk about it if one of us is struggling with what is happening - at the same time, I don't want it dominating our lives. I want to find a healty balance, where life goes on with adjustments as necessary but where MS is not the be all and end all of our lives. Balance, communication, love, partnership, family...these are the things that matter and MS is only a part of it.
I wasn't assessed, I just sent them the letters from the neurologist. The form is soul sucking, it's not nice to see the things you struggle with there in black and white. If you do find that you need to fill the form in again it's best to use a medium day - if he wakes drowsy and can't cook breakfast (not cereal, a cooked breakfast as this is their criteria) then put this down and say why. The MS nurses can help you both fill in the form.
There's a few on the MS thread in this section. You're welcome to join us, it may give you some tips. If you need a virtual ear to bend you're very welcome to send me a PM. It's hard for all patients (I used to work in the NHS) and it can be a coping mechanism to 'forget' you're ill. The jolt back to reality isn't always nice for the patient or those around though. Have you thought about counselling? It may help, especially if he's struggling with his condition. It's bound to be difficult for you too There's no answer, no magic wand. Take each day at a time is the best thing I can suggest.
You're very welcome. You're really not alone, there will always be support here when you need it.
Hi LadyMary - thank you, it's good to know someone understands.
He has applied for DLA - what a joke! He was so upset and cross when he got back.The assessment was done by a physio who admitted that she knew almost nothing about MS, asked DH if he'd seen a neurologist, and said that he was a "bit old" to be diagnosed with MS!!!! FFS!
We're waiting on the outcome.....
We had a bit of a show down a few weeks ago and he's been more mellow. I think the fact that the DS'S have also told him how unreasonable he has been made a huge impact.
I keep putting the literature from his MS nurse under his nose - yet to see it make an impact.
I know it's devastating for him (he fell in the bathroom a few nights ago and found it so humiliating that I had to help him get up), but it does feel very lonely and scary being the one responsible for everyone and everything all of a sudden. I'd say I was strong and independent, but seeing him deteriorating so rapidly has floored me really.
Hey ho, just got to get on with it I suppose. I can't make him pace himself, so I'll just have to be ready when the pieces need picking up.
Thanks again - it means alot.
I know it's been a while since you posted, I was just wondering how you both are? The MS nurses can give you both some support, they don't just help with the medical side of things. Has your DH applied for DLA/ESA? It will really help to take the pressure off you both to know that something is coming in.
He really does need to slow things down, I notice that I get worse when I overdo it (I'm also self employed). It can be so easy to get carried away when you're not feeling too bad, you want to make the most of it. Being tired and stressed can make people (even ones without MS) touchy, stroppy and angry, so hard to live with. Are you getting some time for you so that you can relax?
Things sound so hard for you, I hope you're OK.
So we're almost a year on and I just don't know where to go. DH has got worse very quickly. I think he's really not helping - seems to be racking up the pace work wise (he's self employed), not pacing himself at all.
It's the end of what has been a long tough term for me and I'm finding it increasingly difficult to cope with DH who is sooo touchy, stroppy and angry. Is this common with MS, or is he just BU? I know he's not found it easy, but we're not going to last the distance if he carries on like this.
Hi artcts. Thanks for your interesting posts - would it be OK for me to PM you with some questions?
The other thing u did was started the Dr Swank MS diet. It's very strict but based on a 34 year study where people who stuck to the diet did not have disease progression. Worth a try, I thought! Especially since in have lesions on the spinal cord and want to keep myself as independent as possible.
I stay off forums too as they are depressing!
My mother in law suggested all kinds of modifications to our house renovation when I was diagnosed, downstairs shower room, widened door posts etc, and I'm not even immobile yet - IF I ever will be! I know it was well meaning planning and all that but I'm glad we didn't change our plans just yet as I might not need to, being on the Dr Swank diet and LDN (hope, hope)!
I would recommend you look into trying LDN asap. I've got MS and it's the only thing that had helped. Mine is relapsing remitting and a lot of people take LDN when they are either secondary or primary progressive but I chose LDN over disease modifying therapy and am glad that I did.
It hasn't by any means cured me but it has helped ease some of my daily symptoms and given me a little more strength - every little helps and all that.
More than easing symptoms it's supposed to help slow progression of the disease. And best of all it's cheap and very low toxic/side effects.
Being ppms your Neuro or GP may be willing to prescribe it, but mine weren't as I'm rrms so I had to buy it privately through an online GP service called emed. Anyone can join emed and you only have to email a hospital letter to prove your name and diagnosis to buy a 3 month prescription costing £ 15, so it works out a fiver a month! The monthly pharmacy delivery costs only £18.50 delivered straight to my door - so all in all total cost per month works out £ 23.50. However like I said if you can get it prescribed through your GP it's your on the NHS.
I'm really sorry for the diagnosis - it is a real shock. You sound very supportive and I must say that goes such a long way, makes all the difference in fact. I've felt like I have to hide my struggles from my other half to protect him and sometimes even had to fight him to help me out when I am ill, because he uses denial to cope which is no good to me! It makes it a very lonely road indeed so your support is worth it's weight in gold.
HI Lara. Sorry you're going through this. I could have written your post two year's ago. We're more fortunate (if that's really the right term?) in that DH has RRMS, but we are both a fair bit younger, and at the time I felt so much sadness and rage that our futures had been taken away from us.
The forums are scary scary places - pretty negative at times, and I've not been near them for a while. They help some people, but I couldn't cope with the worst case scenario part of it all.
In terms of priorities, with PPMS get talking to them about treatment, and what drugs are available to help with symptoms and to reduce the severity/frequency of attacks.
Decide who you are going to tell and what. We have only told DH's parents so far. I'm not crazy about keeping things from my mum, but it is his choice, and I support him in not wanting this to change how people see him. This may have to change if ever his symptoms worsen, but we'll cross that bridge if it comes to it. The MS trust has some good advice on this. As far as I know he's under no obligation to tell work.
And (I know it's easier said than done) do try not to focus solely on this. I've had to make a real conscious effort to not pick up on every twinge/ache/cold DH has had since diagnosis.
I completely understand the panic - the uncertainty is absolutely the worst part of it at times. We are both 'planners' by nature and not knowing what the future holds has been a real struggle to come to terms with and has affected how we think about lots of things, but particularly our work and also not putting things off which we know we want to do.
I'll make sure i pop into the forum more often, in case you've any questions, or if you want to, please DM me.
Right. Firstly don't panic. Secondly, many people are diagnosed withbMS and go on to live very normal and fulfilling lives, depending on the severity. A family member of mine was diagnosed with it, and we all felt exactly what you are feeling now, so I understand. But his is the regressive type and since he calmed down, stopped some causes of stress in his life and looked after himself, has actually had no more lapses. You would never guess he has it and we hope that with this continued healthy lifestyle that he will go on as he's doing now.
I would find out exactly what level the doctors think he has and go from there. I would strongly recommend a consultation with a nutritional therapist to make sure dh's diet is the best it can possibly be, and make a resolve to live an active and social life if you don't already. Take each day as it comes, support, listen to him and enjoy your marriage. MS does not necessarily mean the awful things you have most likely heard, but you need to keep an open mind and keep in close conference with the doctors who will be reviewing him. Relax
Oh shit!!!!! What do we do now? He was disagnosed at half term with PPMS after a very short time really. I've gone from knowing nothing about MS to having read loads on the MS Trust, MS Society and NHS websites. But it's information overload. DH'S has dipped into some MS forums but they depressed the hell out of him.
The total uncertainty scares the hell out of me - I know that we have to be philosophical but how do we plan for the future? DH'S is 54, I'm 50 - not quite what we had planned for our dotage.
My way of coping is to go into practical mode and I want to move house now while we can, but I'm very aware that DH won't cope with me in this mode and have kept it to myself mostly.
Where do we go now????
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