Hi all, could someone please help me with this as i dont really know but- i’ve been dx a year now and i have gradually got worse. I am doing an ms diet and have exercises from the physio which i do find hard but i do them. My husband is good but he thinks that if im doing all this properly then i shouldn’t get really bad, ie, in a wheelchair ect. What im asking is this, am i destined for a life in a wheelchair ect, is it a given that ppms sufferers will end up this way or not everyone does get that bad? Because if this is true then when it does eventually happen to me, i have got to get him to realize it isnt my fault and i tried to hold of the inevitable for as long as i possibly could.
Hello, the rate at which your symptoms may deteriorate is a very random matter. All I can say is that a lot of us who post have had MS for a considerable amount of time and our needs, whilst being pointed in the same direction, are still varied. I was diagnosed in 1994 after 10 years of minor symptoms. I now use a wheelchair but I can walk a little, and tend not to use one at home. We first bought one in 2005. If you get a chance to show your husband some of the general information on this site, it might go some way to deepen understanding of our affectations. My philosophy is when I can I will, but sometimes I can’t. Best wishes, Steve.
No, not all PPMSers need wheelchairs…havin said that, some need some kind of walking aid = that could be a stick, FES, a zimmer or maybe a wheelchair for long days out. I`ve seen people pushing empty chairs, for just in case!
I had some difficulty getting my hubby to understand why I needed such things. Because I always research all sorts of things, he says I talk myself into it. Been married 41 years and we still dont really
get each other.
Hya, I think that part of the problem of the diets and exercise it that it makes people think we can ‘get better’ or at least not get worse. For those of us with progressive MS, of course it’s good to stay as healthy as possible, but all the dieting and exercise in the world isn’t going to stop the MS progressing IF it is going to progress (ok some people think that certain diets slow down progression… sorry but I am not a believer). We all progress at different rates and sometimes progressive MS can just stop progressing altogether. Nobody knows why. Nobody knows IF the diets work. There is no real evidence at all. Your husband needs to realise that you cannot beat your PPMS by diet and exercise… someone on here summed it up recently with what a neuro had said to them “MS is a condition that the more you fight it, the more it fights back”. Your husband needs to understand more about PPMS. There are factsheets on this website and also on the MS Trust website. The more he learns about it, the more he will understand that you can’t beat it with diet and exercise (even though both help to remain healthy… but honestly sometimes I get so sick of people going on about exercise! I haven’t got the damned energy to get dressed!!! Don’t talk to me about exercise!!!). Rant over… lol… As for spending your life in a wheelchair… I think for most people with progressive MS using a wheelchair is one way to be able to get out and about. Lots of us are still able to walk around our homes… and others use a wheelchair all the time. Some of us use mobility scooters or crutches. But it’s not the end of the world… It’s a chair with wheels that helps you get about when your legs don’t work… quite simple really. I think your husband is in denial… get him some info and try and talk to him about it. Not a big ‘we need to talk’ session, but just keep gently telling him more about PPMS. Best of luck… and do please come back and introduce yourself. We’re a nice little gang on here and always like to welcome a newbie. Pat xx
Hi everyone, I’m newly diagnosed with ppms actually since Dec 13, I have been reading your posts on and off for the last couple of weeks and found the sharing kept my spirits up.‘you are not alone’ Is definitely true. As a newby to both the MS journey and forums I hope not to rattle on too much (I do have a tendency ). When I was delivered the diagnosis I responded with I knew it, i’d suffered most of the Symptoms for at least the last 3yrs, they all impacted negatively on my home and work life. I left the consultation room and burst into tears not of sorrow but relief. I have just been assigned to an ms specialist , took bad this week couldn’t walk more than 6 paces and definitely unable to drive to work.Gp said I should go in as an impatient, neurology dept said no, advise to Gp, prescribe methylprednisolone 100mg 20 tabs. feel like a mushroom at the moment. I have an appt this week they can’t tell me who I’m seeing cause it’s an urgent appt. my line manager has refused my possible return to work Monday and wants to do an occupational assessment referral therefore wants answers to questions that no one can answer at present. Too much too soon.
Welcome to this forum and especially to this little PPMS gang.
You should introduce yourself on your own thread so that most people can see it. You will get loads of replies.
Hi Pollypocket… your user name is so familiar. Did you used to use the EL board? As you are a newbie to MS I guess I’ve got it wrong. Anyway hon welcome to this board! We’re a nice little gang on here, and although it’s not a gang you would have chosen to join, I’m glad you found us and we’ve already helped you… NO you are not alone! Feeling a sense of relief when you get diagnosis is actually very common… I had it as well as do loads of other people… at least you have a name to describe all the awful symptoms! But that doesn’t mean that negative feelings don’t come along as well… so go with whatever feelings come up. It gets easier as time goes by… but nearly 6 years after diagnosis I still get ‘OMG I have PPMS’ moments! Also remember that stress makes symptoms worse, so try if at all possible to keep stress to a minimum and rest as much as you can. You are legally protected at work. They can’t sack you because of MS and they have to do everything possible to ensure you can do your job… which might include lowering your hours or giving you a less stressful position. They can only let you go if it is really not possible to make any further changes. You could ask your neuro or MS nurse (if you have one) to write a letter explaining the situation for your employer. Never heard of methylprednisolone… but hope it helps. When you want to start a new subject on here… click on the ‘new thread’ button above… put in a title and write your post. Doesn’t have to be anything important… as you can see, we discuss everything and anything on here… chocolate to wheelchairs to tv shows to bowels… nothing is taboo! Once again… welcome… let us know how the appointment goes this week. Take care, Pat xx
welcome to the forum,i have spms but come on here,as i have more in common with the people on here,and they made me feel very welcome when i asked if it was ok.sorry to hear that you are having a bad time of it.try not to stress too much over work,and dont be in a rush to go back,if your not feeling well,take as long as you need,you know how far you can push yourself,listen to your body.