Any thoughts?

Everyday living
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I should probably post on the ppms forum, but here seems to get more traffic.

I’ve had a particularly bad week as it goes. My weak right leg that normally drags, seems to be particularly defiant this week. It won’t bend at the knee as I try to walk (with a wheely walker) so “draws” a semi circle outwards from the hip, before it touches the floor. Getting into bed this week has become a circus. I kneel on the mattress with my left knee, and can’t always bring my right one onto the bed. Either that, or I can manage it but have got the positioning wrong. My head then lands on the pillow, either touching the head board or not quite on the pillow at all. The efforts of just getting into the bed, not to mind into position once there, is exhausting. I’m either crying with anger and frustration or get a fit of laughing and fall asleep.

Also this week, my right hand has become weaker. The finer movements are failing. I can hold a pen or a knife, but can’'t seem to utilise them. I drag the spread across the bread, rather than purposefully butter the slice. I can only manage to use the pen with feather light pressure and barely form the letters. However, tonight I notice the last three fingers are beging to curl upwards. I cannot flatten them, palm up.

Is it worth phoning my gp tomorrow and explaining I wonder. Would oral steroids help? I know there is no relapse with ppms, but surely the deterioration in mobility can’t be this fast, can it?! Any thought would be appreciated folks. I seem to have spent most of today crying with frustration and fear of the future. I am 58 (almost) and diagnosed aged 55, thought I’d be around 65 before deterioration would be noticeable. Not so. Definitely not so.

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Hello Poppy from someone who has been living with SPMS for over 20 yrs but have a lot of experience from chatting to people like yourself. The first thing I would check up on is whether or not you have a UTI ( water infection ) because this could make your symptoms worse temporarily until it gets better. In which case I suggest you contact your GP to get it tested and treated . If that comes back clear then I suggest you contact your MS Nurse if you’ve been allocated one . Hope that helps

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I’m SP and a high (or low) temp makes my symptoms worse whether that is due to any kind of infection or simply because I have the central heating on too high in the house.

As Amethystina suggested ring your MS Nurse for advice. Hope you feel better soon.

Jan x

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Hi Poppy.

I could have written that, all of it, though not so succinctly. We’re even the same age! As I am often cursed with UTI infection, and possibly have one now, I’m going to take Amethystina’s advice. However the symptoms described do tend to be pretty standard with me.

The interesting method of walking you describe, in my case, is caused by having drop foot. I have a leg splint which helps me enormously, I always wear it…or my recently acquired FES device which is also good when I’ve wired up, but as it consists of wires and tiny confections that are very fiddly when one of your hands doesn’t offer much help, I only tend to use that when I particularly don’t want the splint in all it’s glory on view. I saw the Functional Electrical System advertised in an MS magazine, armed myself with all the bumf and mentioned it to my neuron specialist. To my surprise, as she hadn’t alluded to it before, she said, " yes, why didn’t we think of that before".

X.

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Loulla,

If you can afford it there is a wireless unit for FES called Linq. I loved my wired FES but every time I dragged my stupid foot over a doorstep it became disconnected and the associated re-connection risked regular face plants.

Poppy, it might be well worth a chat with your nurse or GP, I understand that steroids help the bodys natural defence and repair systems. Not everyone gets on with steroids and they might not help everyone, but it will be worth a conversation.

Good luck to you both.

Mick

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Hi Poppy

Good tip about the potential for UTI. I test my own whenever I’m either feeling like I’m weeing a lot, or just generally feeling crap. I can post on the EL forum about how to test if anyone wants.

Re your hands, if you are struggling and they are wanting to ‘claw’, or do other unwanted actions, there are a couple of things you can do. First, I’ve discovered some exercises to help with this very problem using ‘Theraputty’. You could ask an OT or physio if they can help with exercises, it was an OT student who actually showed me, after a few years of asking PTs for exercises!! Or google it.

Second, it’s a case of figuring out how to do things that your hands just don’t want to do anymore. So I eat with a smaller and lighter knife and fork to my OH (and other guests to the house). Some people get a device for holding their bread/toast in order to butter it. (You’ll probably need to either ask OT or google such a thing). Then there’s eating, I have trouble with both hands, my right hand doesn’t always want to cut food, but I either just make it do it (sometimes with more success than others) or have OH do the cutting. Then there’s holding a fork and lifting it to my mouth with the left hand: that just doesn’t work. So I cut all the food up and eat just with a fork in my right hand. When eating out I choose things that can be eaten just with a fork. Or fingers.

Then there’s special cutlery. Which I hate. Why do makers of said items think we all have enormous mouths? Mine is not (apart from metaphorically) so I stick with my small and light cutlery. When necessary, I tie elastic bands round the handles to make them easier to hold. I actually have a small fork in my handbag complete with elastic band for eating out. (Or ask for starter sized cutlery which is smaller and most important, lighter.)

And writing, mine is shocking. My signature is unrecognisable. Again I have certain pens which I can just about use and once more, the elastic bands come into play. I do the crossword with a pencil with an elastic band attached. It takes longer, and sometimes I struggle with the clues because I think a letter is actually something quite different!

I type on a tablet rather than a keyboard, using just my thumbs. I know this is actually not helping with the right hand ‘clawing’, but can’t stop myself. I have to be able to write. I try and spread my fingers out, but they do try and get involved!

I have to haul my stupid legs into the bed, and once there get my lovely OH to put them in the correct (ish) position.

With regard to walking, are you suffering foot drop? Which can also affect the knee. You could see if an FES might help you to walk around the house. It usually stimulates the perineal nerve (knee to foot to initiate picking up of toes), bit there are other nerves that can be stimulated with FES. You could ask a physio for advice?

It’s a huge learning curve. One that it’s taken years for me to get to grips with, but then my progression has taken years!

Sue x

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Sue, thank you so much for taking the time to write such a comprehensive reply. You really are some special lady. I’m trying to contact my gp still. Not very successfully so far. You’ve given me lots of information to be looking up. Thanks again x

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Hello Poppy and Sue, and Loulla, I think that I’m in the same boat as all of you, but perhaps not so far along. My right leg has been bad for 12 years. I used to flick it out sideways to climb upstairs, but that movement affects the hip. I’ve come from an Orthopaedic background…!!! I struggle to get into bed, or onto the sofa where I’m sleeping at the moment because I can’t get up the stairs. But waking up is awful, because my legs go into spasm (Is that the correct terminology…?) And it is getting worse, and goes further up my body towards my waist… (?) I have heard about those splints, L-shaped splints. I think I need them. I started off with footdrop, but my first neuro said that I walk normally… I had a violent, violent, violent pain in the lateral (outside) side of my right knee, but nobody found a reason for it. Oh, I say ‘violent’ 3x because nobody would listen to me, and I wanted to make an effect…!!! I think now, as I did years ago, that it is related to the Perineal Nerve which runs down that side. It seems to me that it is caught in something because it is often painful still. Not just neurological but orthopaedic, too. It is quite possible that I have BOTH issues, isn’t it…??? I also have B and B problems. I was looking at getting special pants, but couldn’t work out what sort to get, let alone what size… but, although I can’t do pelvic floor exercises, I do seem to be tightening up some muscle or other, or indeed the bladder itself, by holding on to my wee for as long as possible before peeing. Is the bladder a muscle…??? And I can hang on a lot longer now, but still want special pants for going out, just in case. I must stop writing now and walk around for a little while before I get rooted… Oh, Sue, could you post how to test for UTI, please…??? Thank you… It’s handy to be able to keep a step ahead… Bye for now, Anne

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Hello Anne

You can self refer to the bladder and bowel service. Or ask your MS nurse (I can’t remember if you’ve got one yet!) or GP to refer you. Strengthening your pelvic floor is a good idea, if you can manage it, but many of us do have more B & B issues than can be helped by exercise.

Try talking to a physiotherapist about FES to see if it would help you. Just bear in mind that it’s not available on the NHS in every area (damn the postcode lottery!)

I will post the self testing information separately.

Sue

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Hi Poppy,

When we walk we use a whole team of muscles, from the middle of our back right down the foot; all working in perfect harmony. Until we get MS. I heard of someone who diagnosed someone else with MS based entirely on their gait. They called it the MS walk.

Getting into bed requires a lot of effort. I use a scoring system based on technical merit, artistic impression and presentation just to relieve the tedium. Getting it right means I have to line up with one particular stripe on the curtains and the wardrobe door handle on the left. When it goes wrong I have to get up and start again.

Occasionally I take 5 mg Prednisone steroid when I feel I might benefit but there’s no evidence that I’m doing myself any good. As with all these medicines, what works for one doesn’t work for the other. If I have an idea I’ll ask my MS Nurse for advice or simply tell my GP to write a 'script.

We all get frustrated and frightened. I know I do. I’m 63 (nearly) and was diagnosed when I was 55. I had no idea what I’d be like now eight years ago. And I have no idea what I’ll be like in another eight years.

But there is one thing I am very sure of and that is the people on this Forum will always be as compassionate, caring, funny and thoroughly lovely in the years to come as you are now. Including you Poppy.

And for that I’m very grateful.

Thank you.

Anthony

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Thank you Anthony. A smile and a lump in my throat… I too was diagnosed aged 55, and I’ll be 58 Wednesday. A frightening race indeed with so many hurdles along the way. Frightening to think where I’ll find myself in a few years time, with the speed of things now. I try not to think most days, but sometimes it just overwhelms me.

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It was through the physio dept that l eventually got my FES. It took a long time and a bit of a journey into B/ham to a rehab hospital to get it. Mine is wireless Bluetooth and is easier to wear then the previous type. I now only go every 12 months, unless l have any problems. They stock me up well with replacement foot switches and the contact pads. You need to get a physio on your side. They can contact your nearest rehabilitation centre to get you the initial appointment. Once you are on their list it takes no time at all to get started.

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I envy you, spacejacket. I have an FES funded by the NHS but was told that if I wanted wireless I would have to fund it myself. On the meantime it’s trailing wires sort of contained by a piece of tubigrip.

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I envy you Moirah, I self fund my FES entirely. My CCG take the view that they will only fund FES for people with MS who are ‘exceptional’. As everyone with MS is different, no one is exceptional. Thereby they get around the NICE guidance that they are not permitted to have a blanket ban on funding for specific diagnoses. Gits. I self funded the wireless footswitch as well, until it broke. Then it was going to cost me another £300. I decided that I don’t / can’t walk enough, even with the FES to pay that. So I too have trailing wires and ragged tubigrip.

Sue