Forum

SPMS

Having had SPMS since 2008 feel my little mobility is now fading fast. Feel upset clinging to what I still got and scared for the future. Differant from when I first got diagnosed 18 years ago with all the great DMD’s now its just giving me drugs to combat the everyday worsening symptoms. Do I look at putting in a wet room? Should I get a more suitable wheelchair for more permanent use, superlight sporty type?

Had to others cope with the future with SPMS?

Sorry for being a gloomy cow

Hi

My diagnosis came straight in with SPMS in 2006 so it’s all I’ve ever known. It is a bugger to get used to.

I know this easier to say than do but try and not think about the future too much as there is no certainty about it. Live each day as it comes. If you are buying a new wheelchair anyway then I would look for one that could best cope with any possible future needs but I wouldn’t buy one if I didn’t need it now. Have you contacted wheelchair services? That might save you any unnecessary expense. Likewise with the wet room, if you are putting in a new bathroom then I would put in a wetroom otherwise I would wait until I needed it.

SPMS can and does plateau so anything is posssible, it makes planning and control difficult. However, there is no inevitability about the course of the disease.

Good Luck

Anne x

Use wheelchair now in and out probably too much have one from wheelchair clinic but want one I dont have to rely on my husband lifting out boot worry if I was one my own. Our bathroom is done with bath but getting harder, would mean a extension if a wet room is needed.

Fed up worrying about the uncertain things and making home more adapted.

Thanks for advice

Can you access your bathroom OK? Do you live in a bungalow or can you manage the stairs in your house? If you can would it be easier and cheaper to adapt the existing bathroom? If you can’t get to your bathroom then you probably need to think about an extension and then it would make sense to put in a wetroom.

Re the wheelchair I don’t know a lot about this but I think you need to do some research and get some specialist advice. There are a whole range of lifts/hoists available and wheelchair adapted vehicles.

Please try and not to worry and deal with things when they happen, things are rarely as bad as we imagine them to be.

I had a seriously bad day yeterday felt over the edge. normally can deal with it as it happens. A nightmare 5 months.

I can access bathroom with had rails although bath is getting hard. not wide enough for wheelchair so would need extension on back or side of bungalow. Can deal with what comes just feel unorganised and hate that. Oh i just get so angry.Not the right frame of mind for ms dont think.

seen great wheelchair on web £2000 just got to see if can get similar from local services.

I would change a lot of things in my 18 years of ms journey. Being 23 at the start did not help. Oh well nice to dream

Thank for advice

You are not being a gloomy cow. I have been feeling exactly the same today. I fell this morning and had to drag myself to the settee and pull myself up. I just use sticks at the moment but really wish I had a wheelchair around this morning as I was on my own when it happened.

I already have a wet room which the council put in for me. Realy helpful.

I have SPMS and suffer every day with mobility. I am fighting the wheelchair thing but know it will come soon.

Hope you feel better soon.

Shazzie xx

I dont feel as though I didnt fight the wheelchair long enough so good on you. Just feel once spms itt feels like a downhill descent with lots of drugs thrown at you to manage progressive symtoms and no positive feedback from neuro so complete waste of time. I sound so unoptimistic need something tp pull me up it used to be a nice glass of pinot before I was so lightheaded.

I’m not sure Suki. Think I am being a bit silly now trying to fight on with the walking when I am putting myself at risk. I broke my foot a six months ago because of a fall and damaged my hip a few months later. Consultant said I was lucky I didn’t break it. If you can call it lucky.

I think you are doing brill. Perhaps if we can get a nice sporty wheelchair we will feel better.

Take care of yourself.

Shazzie xxxx

Hi Suki,I reckon you need to live for the day, but have one eye on the horizon and plan accordingly

Wb