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Just about me

Hi everyone, I am new to the forum, so not sure how it works yet. I am not new to MS though, as I have had it for more than 30 years. Being told you have MS is devastating, but when I was diagnosed, it was a case of being told, go home & learn to live with it, Not Helpful at all. Nowadays, you get so much more help & information, which is so good. I have to use either a wheelchair or motability scooter now, which did take a few years to get my head around, but I had to swallow my pride & use them, or stay at home & never go out again, which I wasn’t prepared to do. I’m not sure if other MSer’s found it difficult to start using them, or was it just me?

Hi Snowie and welcome. I’m a newbie and was diagnosed with ppms last November although I’ve probably had it about 9 years. I’ve just bought a walking stick even though I’ve needed one for a while so I know exactly what you mean. I didn’t go out on my own much last year due to three falls resulting in a sprained ankle each time but I’m getting my confidence back now and trying to get out more… Its difficult with foot drop and balance issues and having to watch the floor for trip hazards is a bit boring…

Im sure you will get a lot from this forum and also be a good help to others as you’ve had ms for so long. … your experience will be invaluable. Karen

Hi Snowie,

Sorry you’ve had to join this forum, but welcome and glad you have as lots of support and information.

Like you, I’ve had MS for 30 years. Was diagnosed 20 years ago and was told to take fish oil and avoid infections, which I still do, along with lots of medication and vitamin D.

Benign, now SPMS and same as you now use a wheelchair and scooter. Got enhanced mobility so have an estate car with a hoist giving me independence. Yes, was difficult to accept , started by using shopmobility not in my home town. Then decided as you did, use them or don’t go out! So no, it’s not just you, think we all have to start accepting our, hopefully, slow demise.

I have a favourite hotel I go to on my own where I take my scooter. The concierge parks my car for me, waiters get my breakfast so I keep my independence.

Stay well and stay positive. MS Society give loads of advice have a good look around this site.

Jen

Hi Snowie,

I was diagnosed with PPMS about 10 years ago. The progress has been so slow that only my MS nurse noticed the decline in my mobility in our six monthly checkups.

A couple of years ago I realised that I was not going out because I couldn’t walk more than a few metres and that I was getting frustrated. My decision to get a cheap second-hand scooter was easy. Spend £600 of my savings to regain my independence or stay indoors.

My first trip was so liberating, I hadn’t realised how much I needed my independence. And it is a need, not a want or a luxury.

Welcome to the Forum.

Anthony

Hi all, well I went to see my Neurologist & MS nurse yesterday, they have trying for the last couple of years to get me to try a drug called Fampridine, it’s meant to be able to help you walk better. I see the MS nurse 1st April (all fools day) & she times me walking with my four wheeled walker over a set distance, then I start the drug, a few weeks later I have to do another timed walk to see if I’m any faster. Fingers crossed it will help. Reading the side effects, it says can cause dizziness, thats all I will need, trying to walk & feeling dizzy at the same time. My balance is rubbish at the best of times. But I’m willing to give it a go & just keep my fingers crossed that it does what it says it does on the tin. Will give you an update when I’ve been on it a few weeks

Hi all, I was wondering if anyone knows how to regain my balance, apparently my Neurologist says it’s my core, any suggestions would be most welcome

snowie16,

I was diagnosed more than 30 years ago so have a bit of historical experience. As for dealing with the constantly shifting goal posts of what I will or can accept, these things shift about and my pride and stubbornness still catch me out and highlight how stupid I can still be after all these years. Only you can set and adjust your thresholds. When I am about to pig headedly so “no I can not accept that” (whatever it may be) I have a couple of things in my back pocket…

1: How would I advise my best friend ?

2: Remembering how useful and liberating all those other things were once I got past my silly pride - dignity based objections

As for balance I refer you to my earlier comment.

Good luck

Mick

Hi

I do Pilates once a week and it’s great for my balance and my core strength. The woman that takes the class is a physio so she knows pretty much what I can and can’t do and how to adapt exercises so that I can do them safely. It might be worth asking your MS nurse if there are any MS specific classes near you.

Hope that helps

Becky x

Have you tried an FES for your foot drop? I’ve been using one for the past 12 years and I can honestly say that it’s changed my life.

Becky x

Hi all, I decided against trying Fampridine after reading comments on the forum. So my MS nurse has suggested I try Simvastatins, as it’s meant to slow progress of MS. So I am going to give that a try, will let you all know if it does help at all in slowing my MS down at all

Tai chi is very good for balance plus veing slow and gentle. I used to wobble all over the place, but you persevere, even sit down to do stuff, its a start. Also there are seated exercise classes. Ask around or google to see whats available in the area. I also have had MS since mid 90’s. Swimming is also good. Mogace is right about the goalposts moving. you’ll see from various posts that ppl struggle with the idea of using a wheelchair/scooter/stick. Dont worry about other ppls’s opinion of you is my advice. Wheelchair made SUCH a difference to me.

Hi your simvastatin may have the added bonus to lower your cholesterol too, it’s the one I take for cholesterol

Kay

Simvastatin is supposed to delay brain shrinkage. So it won’t make any existing MS symptoms better. It is more of an insurance policy for later cognitive deficits.

I tried it for 6 weeks in 2017 on the advise of my neurologist (and reading about it on the Barts Blog). After 6 weeks I was feeling like my legs were really weak (significantly worse than their usual state of crappy). I thought it could be a relapse, tested my wee just in case it was an infection, contacted my GP and got some steroids, then checked the Simvastatin leaflet and discovered weakness was a possible side effect.

So it may not affect you like that. Chances are it won’t, if it did that to everyone, nobody with MS would take it, and there are many people taking it for the reason I did.

(I did discover in the process that my cholesterol was slightly high, but my GP assured me that there’s a difference between ‘good’ cholesterol and ‘bad’ cholesterol, and mine is firmly on the good side. So my cheese intake is acceptable. Good news!)

Sue

I posted on another thread, I reluctantly, and stupidly, over the years, resisted firstly a walking stick, then blue badge, crutches, wheelchair, mobility scooter. However, using each one, improved my quality of life.

I did feel self conscious but my not too subtle mate said “nobody give a sh** and you’ll get a lot more stares when you fall on your arse”

regarding foot drop , I use a SAFO as the FES did nothing for me.

derek

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