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Petrified

Up until last year, I was coping reasonably well and getting about mostly unaided. Then I started needing to use a stick for the first time in a few years for any walking over a few hundred yards. I then started needing to use a mobility scooter for shopping centres.

Over the last few months, it’s been getting steadily worse which has led to me needing to use crutches. The last few weeks it appears to have accelerated to the extend that I now struggle to get around the house without having to cling on to furniture/walls.

To cap it all off, I just made the cardinal sin of looking it all up on the internet and have come across a few articles saying that, on average, wheelchair dependency for PPMS sufferers comes after 10 years. My 1st symptoms appeared in 2002!

I’m petrified that this awaits me very shortly and all sorts of things are running through my mind, the biggest of which is that our home would be impossible to convert to something that would be remotely wheelchair accessible and, even if it wasn’t impossible, we couldn’t afford it. Most of all, I really don’t want to spend the rest of my life sitting down!

Sorry for the whinge, I’m just very upset at the moment and need to vent.

Hi,

Your story matches mine.

Mostly OK, then sticks and crutches, throw in a rollator and now I have a wheelchair. My house was completely unsuitable so I had to move into a council bungalow – away from an area that I loved but hey ho life goes on.

I spent 6 months refusing to even talk about secondary progressive but eventually had to accept that it was my new reality. It was like being dx all over again.

I cope by dealing with the here and now. I don’t look ahead because it’s too scary. When I was initially dx in 1995 I thought a wheelchair would be the worst thing in the world…… but it’s not. I’m waiting for a new powerchair to be delivered and I’m giddy with anticipation.

I don’t really like where I’m living if I’m brutally honest but the bungalow is perfect and makes my life much easier. As for spending your life sitting down – it’s not sitting, it’s gliding and it’s so much nicer than stumbling.

I know it seems bleak – but get Occupational Therapy involved they may come up with all sorts of solutions for your house that you can’t think of.

Jane

Hi fabs

First off, why the apology?! I think there’s this myth for us Brits that we’re meant to stiffen our upper lips and put on a brave face all the time, and that if we down’t then we’re weak and have failed. But this is a huge thing to happen - we’ve spent most of our lives walking, and it allows so much freedom, so whenever any of us go through what you’re experiencing, to feel petrified is normal.

When I was first diagnosed I was terrified of the idea of ‘ending up’ in a wheelchair, it utterly freaked me out. Now, several years later, I do use a wheelchair most of the time. Obviously I’d love to be able to walk freely but to be honest, as with most fears in life, the reality isn’t as bad as the the fear. I’ve survived. My life hasn’t fallen apart like I assumed it would. I can still get from A to B. It might take a little bit longer than it used to, and I might need other people’s help sometimes, but I can still live an active life. I’d love to be able to play football again, but actually pretty much everyone I used to play with has stopped playing as well because of dodgy knees or too many other commitments. My wife wrote a song a few years ago with the line ‘Everything’s going to be Ok, but only when your definition of Ok’s been redefined.’ and, while it oviously can be a pain in the backside sometimes, that lyric is something I can relate to.

I don’t know if that’s something you want to hear or not, but I hope it helps. But also, it might be worth being referred to a neuro physiotherapist or take up some Pilates, as they will be able to help improve your walking and balance.

Dan

I’m not quite there yet, I can walk around for aboout 10-15minutes gradualy getting weaker and less in control of my leg movements and then I have to just stop and sit down. I steady myself on the furniture and walls and often hold my partners hand when I have to go out anywhere.

Physio has offered me a cane but I have refused it for now, I’m determined to walk for as long as I can even if it means I look ridiculous and risk falling over. I assume one day I will be in a chair.

This August we are off to Cyprus and getting around the airport and onto the plane will be my first real taste of what it feels like since I am unlikely to be able to stand or walk for that ammount of time or distance. I will have to get a chair or assistance to get me to and from the plane.

People have said to me, don’t worry about it, nobody will recognise you at the airport anyway, thats really not helping though.

As for how suitable your house is for converting to a wheelchair environment, I think you can ask your local council for a house that suits your needs. If you are unable to get around your current house I think they are obligated to find you something, although I know the thought of going somewhere picked for you isn’t great.

FrostPaw,

We were on holiday in Florida the first time I used a chair (The theme parks in Orlando being just too huge for dodgy legs) I can’t tell you how wonderful it was. For the first time in years I was brisk! I could keep up with the family no matter how fast or far they went. I found it completely liberating.

Using it back home where I knew people - that was a different matter. Eventually I had no choice but honestly it’s not the worst thing in the world. The worst was probably loosing my balance in M&S and knocking over a display of china - I’d rather be in my wheelchair than suffer that embarrassment again.

Relax about it and have a lovely holiday.

Jane

I forgot to add regarding not being able to afford any adaptions to your home. Contact your local council as there’s a good chance there’ll be funding available for things like that. Not sure which department it would be that woukd do that though. As as jane says, an occupational therapist may think up (and provide) solutions that you’ll not have thought of and could really help. Ask your MS nurse or GP to be referred.

Dan

Thanks for the replies, appreciate everything you guys have to say.

I will certainly speak to my Occupational therapist about what modifications could be done but I don’t hold out much hope with regards to funding. I had a look on Direct.gov and it’s all means tested. We both work full time so I suspect that we wouldn’t qualify.

Dan - the apology is because I know that there are people on here who are worse off than me so I do feel guilty about having a whinge. I have been seeing a neuro physio for a while now and she’s been great but the progression lately has been quite rapid (hence my fears) so it’s been tough going. I’m not sure how much physical benefit I’m getting but she’s very good at cheering me up.

Marc

Remember, a walking stick, a rollator, a wheelchair, a scooter etc are ‘tools’.

Everyone uses ‘tools’ in their life, cars, busses, trains etc to get around.

I finally accepted that unless I wanted to sit and vegitate I needed an arsenal of ‘weapons/tools’ to keep me involved in living.

Yes I still get down days when I sit and get depressed about the direction my life has gone, definately not the route I chose but hey-ho we all hit ‘road-works’ on the best planned journey.

Good luck, face each challenge as it comes and stop trying to see round the corner, who knows the road might vere away from that corner before you get there!

Good luck. Ann

Ann, I do apologise for not replying to your post which makes a lot of sense.

The last week has been very difficult and my had has been spinning. I saw my physio today and it’s looking like I’m nearing the end of what she can do for me. I did get my new crutched which are a little nicer than the temporary ones she gave me and have comfy ergonomic grips.

Next stop is my annual Neuro appointment in June so we shall see where we go from there.