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Catching up :-)

Hi Lovelies

Been a while…again.

Just catching up on a few posts and have a little tear in my eye…so, so happy for you Pat You must be so excited!

Hope you’re all as good as you can be.

As for me, I seemed to be in the throes of progression. I don’t know if it’s a mixture of progression and being less active now I’m not working or just progression (can’t believe it’s a year at the end of this month since I was made redundant)!

I’m having real problems with my left leg. When I wake up I can’t bend my leg as it is so stiff, I have to manually lift and bend it…how heavy are legs to lift deary me . After about an hour it loosens a bit but I’m finding it really hard to bend it when I’m trying to walk up stairs. I’m now suffering from extensor spasms when I’m in bed so I’m presuming that has something to do with it.

I’m also having a problem with my left ankle, when I stretch it (when I’m doing yoga for instance) it’s really painful and the only way to describe it is it feels like it’s tearing inside. Does anyone have this or know what it is?

I know I should be speaking to my GP and making physio appointments but since my fall I have lost all my confidence and can barely walk to the car now.

Oh and sticks v sticks with cuffs. For those of you that use sticks do you find sticks with cuffs better?

On the plus side the sun is shining as I look out over the fells

Much love

Oonagh

Xxx

PS sorry this message is a bit all over the place

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Hi Oonagh, so lovely to hear from you but not so good to hear the problems you’ve been having.

Baclofen is very good for stiffness and spasms… have you tried it? Problem is that some people find without the stiffness their mobility is even worse.

Worth remembering that even with PPMS things can come and go. It’s possible the warmer weather is having negative impact… also remember those pesky UTI’s can knock you sideways.

Thank you… re the cat! Yes I’m very excited. Amazon are delivering ‘Cat Heaven’ tomorrow. Only the best for Dickie!!!

Hope you got your benefits sorted. I seem to remember you were having some problems with them… or maybe just applying for them… that is a problem in itself!

I haven’t tried the walking stick with cuff. I generally use a walker around the building I live in and mob scooter or wheelchair outside.

Good to hear from you and as usual even with all the stuff that MS throws at you you still manage to sound positive!

Bet it’s lovely in the fells. Very much ‘summer in the city’ here.

Take care and have a great weekend,

Pat xx

Hi Oonagh,

nice to hear from you, sorry to hear things are not too good, same here too,wish i had a magic wand to make us all better.

J x

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Oonagh,

l found l could not manage with sticks - and ‘furniture walking’ - so l got myself a rollator. This has become a good friend. l was advised to try a Topro Olympus - and l must say it has been so useful. lt opened up a new world for me - as the carrier holds so much and the seat so comfy and easy to get up and down. Now l can get all around the garden - carry watering cans etc - and even pick veg and berries. Always having somewhere to sit is reassuring. lt folds up easy and goes in the back of the car.

l have a stairlift - so l have another rollator at the top of the stairs so l can get to my bedroom.

Now l can cook and carry my plate and cup etc on the rollator to the table. This has made such a difference. lt holds me in a good upright position as you can adjust the height of the handles. This means l can get to the loo in double quick time!! -

Now l can go to the library - carry my books in the bag and use the seat when l need to - a bit more independence. Been to parties where l have managed to dance with my rollator. And by the end of the evening l notice that many of my pals [the worse for booze] are also holding onto it. We used to dance around our handbags - now it is the rollator.

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Hi Oonagh

Lovely to see you here again, sorry that things have not been so good. Wow, is it already a year since you finished work, my time seems to be flying.

I take baclofen for spasms and stiffness, and it does take the edge off it for me, maybe worth a try, but if you do, start on a low dose and increase gradually.

Going back yonks ago I found elbow crutches were far better for me to use, but a rollator was better still, especially one with a seat on. Have a word with an OT Oonagh, as they can supply these, no point wasting money if you found it not to be useful.

Nice day here today, sun but with a lovely cooling breeze, enjoy the Fells, that sounds great.

Let us know how things go, take care.

Pam x

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Hi Pat

I take Baclofen and some nights it does take the edge off but the extensor spasms are new.I’ve finally made an appointment with my GP to discuss it.

You’re probably right about the warm weather not helping, I wasn’t affected by heat until this year…thought I’d escaped that joy

I eventually got my ESA which was bitter sweet of course…just keep dreading the post cos we know PIP is just around the corner.

I hope your ‘Cat heaven’ is full of catnip toys and treats

Thank you for your kind words as always Pat.

Oonagh

Xxx

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Whenever you find that wand J please pass it around

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Hi Spacejacket,

I only have a wee house so basically don’t have any room for anything but a stick or sticks. What I am striving to do is more physio, more yoga and seeing my physio again to see what other exercises I can do to help with the new symptoms I have. Don’t get me wrong, I’m not overdoing it when I do exercise I’m just not quite sure which areas I should be focusing on. Hopefully my physio can set me on the right path

Oonagh

Xxx

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Hi Pam ,

Time does indeed fly…just thought it was supposed to be when you were having fun LOL!

I take 20mg at night and 15 in the morning, I don’t really want to up it any more but will discuss it with my GP week after next.

When I see my physio I’ll ask her which type of stick would be better for me…she might even have some I can have a ‘go’ on

Thank you muchly Pam.

Oonagh

Xxx

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Getting a decent physio to sort you out is exactly the right thing to do, but MS Trust is a good place to start while you wait. The core stability exercises really do help keep you upright.

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Awww thank you Whammel, I started off with all good intentions over 2 years ago courtesy of links from your good self In the end I was so knackered after work that I couldn’t face doing any exercise. I’ve been trying to get back into some kind of routine recently but I obviously need some guidance. I have a neuro physio who is lovely and works with quite a few people with MS. I haven’t seen her for quite sometime but will be making an appointment with her.

Thanks again for the link Whammel

Oonagh

Xxx

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Cat nip and treats (Dreamies) are all ordered.

(As well as litter tray with hood, eco-litter, 48 pouches of food in various flavours, big bag of dried food, little feeding bowls, water bowls, little mat to put the feeding bowls on, radiator bed, scratching pole with another bed and more toys inc running mouse toy… I think that’s it… lol… never had so much fun shopping in my life! )

I wish they’d come! Still waiting.

Pat xx

Hee Hee! Well there’s only the main man missing now my mammy’s cat Albert adores Dreamies, you hold some in one hand and he taps your other hand to ask for some

Awww Pat you’re going to have such a lovely time together

Oonagh

Xxx

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Does anybody have trigeminal neuralgia? If you do can you tell me how it was diagnosed, can you get it on both sides of the face, does it ever go away? Thank you

Hi Oonagh, sorry to hear you’re struggling but it’s nice to hear from you again. Like Pam I like elbow crutches, they make me feel steady but I agree with your decision to wait and see what the physio recommends as they usually know what’s the safest and best for your posture etc.

Good luck with it.

Cath x

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Hi Nina

I’m not great with my stick but I think it’s cos I don’t use it very often now as I’m at home most of the time.

As you say, hopefully my physio can guide me.

Oonagh

Xxx

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My rollator is 25’’ at the widest point - back wheels. Handlebars are 19’’ across. A normal door is 30’’ - although in a newer property they do have to be wheelchair width. Topro do a smaller version - as mine is designed for outdoor use - going over rough ground etc. lf l get to a point where l can’t get through - eg. ln a restaurant between people sat at tables - l just pull up the handle and it folds together and will go through a 6’’ gap.