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Balance and what to do next in life .....

Hi all hope everybody is ok , I was wondering how other people deal with balance problems my balance is absoloutly awful since a previous relapse that was just over a year ago. I regularly end up clinging on to things to get about and have fallen more times than i can count somedays are worse than others but i have got to the stage now where i dont go out alone apart from in the morning to drop my daughter to school but i remain in the car and she just runs in so its not a issue. The thought of going out and falling when im on my own is one i dont want to face and then theres the looks and sniggers that make it even more upsetting . I have never applyed for DLA or any other benifits as i dont think i am at the stage where i would qualify for it so now need to go back to work, the job that i used to do is no longer a option due to the ms so i would really like to retrain in another career that will be suitable now and if things get worse in the future as at the moment im only in my 30,s .Everything that i consider that i would really like to train in seems to not be suitable unless i can get my balance issues under control the only thing that could be a option is admin work wich to be honest doesnt interest me at all.I have also been told by my neuro the way things are progressing i should put on hold thinking of any more children. Im at the stage where i really want to get on in my life and do something but the MS always seems to be in the way . What am i supposed to do just sit in and do nothing for the rest of my life because thats how i feel right now . Also another thing i wanted to ask and the reason for my post being Anon is i suffer from dizzy spells very often, if i mention this to my neuro or ms nurse will it go against me when my driving licence is due to be looked at again ? I have to say it hasnt effected me ever when sitting down driving just when walking/ stumbling about but the thought of them thinking it might do and taking my licence is something thats really worrying me as how would i get about then . Sorry for the moan just really need some advice and feel like i need a direction to head towards at the moment , Thanks xx

Hi Balance problems are not much fun. I used to always be falling into walls etc and a year on from when my main problems started I still have mild balance problems but on the whole much improved. For me I had a few sessions with a physio ( still waiting for my NHS appointment to come through seven months on, still have hand and arm problems, ms nurse chasing it) I went private, just for a few sessions, because I was told it could be that long and i needed to use my arm and hand to write for my job. My hand wouldn’t work at all! However although I was given exercises to help my hand the physio was more concerned about me falling. She was able to give me exercises to improve my core strength. I also had exercises that used an exercise ball and a balance pad. The balance pad was really useful for me. It’s a foam mat that you can just stand on and feel your balance…making sure you have something to hold on to! Have you had any physio yet? If not maybe you could be referred? Not all areas have such long waiting lists, it can be a bit of a postcode lottery unfortunately. Not sure what to advise about dizzy spells. I have them too on some days and like you say better when sitting. I just try and avoid driving if I feel like that. Hope you find something that helps you soon. Mish x

Hi, I can’t give you answers to all your post but I think you need to apply for dla. It sounds to me like you may well qualify if your balance is that poor and you can’t get out the car when you drop your daughter off. I would apply if I were you, the worst that can happen is that you are refused! IMO definitely worth a try. I can’t help you regarding your balance, mine is also very poor, in fact it is and always has been my worst problem. As for dizzy spells and driving, I don’t know, I mean , yes, if you mention it to neuro then it is in your records and then there for the DVLA to make of it what they will, no idea if it would lose you your license or not. If you don’t mention it, its not in your records so won’t be taken into account by the DVLA because they won’t know about it. Then, if you suffer dizzy spells are you safe to drive even though you say you are. If you mention it you might get something to help you with it. I can see your dilemma in regards to this and understand why you posted anon, I guess this is a bit of a moral dilemma, I know what I would do, you’ll have to decide what you’ll do! Cheryl:-)

Hi I suffer with dizziness/vertigo which makes balancing very difficult for me too. I have had an episode of double vision also. I had to disclose this info to the dvla and they restricted my license to three years but I didn’t have it revoked. Although legally I can drive I am still recovering from two severe relapses since June 12 and I haven’t driven since then through choice, I wouldn’t want to put myself or anyone else in danger. I would advise you to inform your neuro team so you can get help with the issues rather than masking them in order to keep your license. The chances of you losing your license is small. Hope things get better for you soon x

Hi anon Sorry, but I agree with mini78…I too suffer from dizziness…in fact it was what started my road to diagnosis…DVLA have given me a three year licence but I choose not to drive. It is dangerous to you, your daughter and other innocent road users and pedestrians. Dizziness also affects spatial awareness and reaction times. If you were to have an accident and were found to be suffering this symptom, your insurance could be invalidated and you could be prosecuted. I’m sorry if this sounds harsh but you really are better off curtailing this before anything happens and DVLA revoke your licence because of it.

Hi anon

By the sounds of it you definitely should apply for DLA. And if you’ve not done so already, you need to inform the DVLA and your insurance company you have MS, as this is a legal requirement. However, your premium won’t go up and chances are you’d just get a 3 year licence.

As for you balance, I would ask to be referred to a neuro physio. If there isn’t one available, then see if there are any Pilates classes near you. The exercises I do with the physio are all based on Pilates ones, and are designed to improve core stability, balance and walking - they certainly help mine.

Dan

Have you considered a rollator to assist with walking?

I have a 4 wheeled one with a seat so I can sit down when necessary.

The brakes are very useful to save yourself should you stumble.

Mine was provided by a physio or OT.

It folds easily to go on the back seat or boot of a car.

Do you use a stick - you don’t say anything about it if you do. I still fall sometimes with mine but often am saved by it. Sorry if I’m telling you something really obvious. Apart from that, I’m afraid I agree with everyone else. A neurophysio will be able to help you. You must tell the medical profession and the dvla about your symptoms. Just imagine if you have a dizzy spell while driving and cause a serious accident. It’s not worth the risk.

Hi thankyou all so much for taking the time to reply it really has given me alot to think about. I have kept on driving till this point as i have never had a dizzy spell sitting down or whilst driving before, if i had ever felt like that whilst driving i would never dream of continuing driving and putting anybody at risk i just wouldnt do it . However it has made me realise from your replys there always could be a risk of it happening when driving and for this reason after a long talk with my husband I am going to stop driving until i have spoken to my neuro in mid april about it and see if he feels i should stop on a permanent basis . Its scary that unless things improve i may not be able to drive anymore but fully understand it is for mine and others safety it has however put me on such a down today . Just another thing in a long list i can no longer do :’( . As for the balance i have been on a list for physio and just waiting for a appointment im just hoping it helps. I have to say and please dont think badly of me i dont use a stick and choose to remain inside instead . Vanity yes it probably is am i cutting off my nose despite my face yes , at some point i know im probably going to have to face the whole stick situation but as i said im in my 30’s and just find it hard to get my head around. I really need something to do in my life i need to work i need a project i need something i can do that im good at, i feel so lost :’( . What do other people do for work that works around there MS . What do other people do in there spare time ? many things i used to enjoy i cant do anymore , How do you cope with this as im sure many people have felt the same ? Thanks so much xx

Hi again, think you’ve made the right decision, but please do consider applying for dla, you may well qualify for dla and if you don’t you are no worse off than you are now. I resisted using a stick for a long time too, I know how you feel, you’ll know when the time is right. I guess that work wise you should think about doing a job that involves little or no physical effort, i.e a sitting down job , accountancy, computing, I work in can office and it suits me fine with my ms. I admit that I have been very very luck with how things have worked out with this. Cheryl:-)

Hi anon

I work for an evil bank, who have been absolutely amazing since I got diagnosed. The job’s sat at a computer and they set me up so I’m able to work from home, so I split my time between home & office. They also let me work what is effectively flexi-time - I don’t have a definite start or end time, just as long as I get my hours done during the week. They also even paid for my very nice wheelchair. I also use Access to Work (a DWP initiative to help people with disabilities to work), who pay for me to get a taci to & from work.

When I’m not working, I do things like writing, reading, playing board or card games with friends, going to the cinema or watching box sets, going for a drive in the countryside, doing mindfulness meditations… I sometimes do a thing as well where I look back over the last day or week & notice the things that I really enjoyed, that energised me or that felt like they were good for my soul somehow. As I’ve done this I’ve noticed recurring things that come up, so I try & make sure that I do those things regularly.

Dan

Hi

I get Balance problems but only when I stand up - I’m okay when I’m sitting and I’m now in a wheelchair as I was falling up to 20 times a day. I tried very hard to keep going without a wheelchair and tried walking frames, sticks etc but none helped as the actual standing seemed to bring on the balance problems. So I’m in a wheelchair - sitting - and I dont have those problems anymore (unless I try to stand up). If I was having dzziy spells when sitting then I wouldn’t drive as it puts peoples lives at risk and I couldn’t live with hurting someone else. I drive with hand controls and have a 3 year licence. You need to apply for DLA as your mobility is problematic and it will help you to get essentials to keep you in your community - I got a motobilty adaped car and with that and my wheelchair I’m able to get out and about again.

Get someone to help you fill out the forms such as DIAL and put down how things actually are for you and not simply as they are on a good day as those good days are often few and far between with MS.

BW, Mary

Hi anon I am 47 and resisted (and still do) using a stick. I manage without most of the time at the moment… However I do have a fold up stick for my bag for if I start to overdo it then I can whip it out to help! Feel like superman stepping into a phone box (usually among the the clothes racks - lol) doing a twirl and ta- na emerge with my stick! Ok sounds bonkers, and probably is, but like to try and deal with everything with humour when I can! My poor hubby has got used to it over the years! Lol I work in a school, which is tiring but I have been able to adapt what I do most of the time. Two months or so before my main problems started I also converted my hobby of decorating cakes into a small business as I love a project too. Unfortunately, despite all the money I invested, I am back to.cakes for family and friends as I just haven’t got the energy, or full use of my arm and hand to do it like I want to. I can be a perfectionist! So I have been looking for new projects too. My best friend moved to france so i tried to learn french - but i haven’t managed it in 47 years,so abandoned that idea for now. At the moment I am trying to learn about antique silver and use my brain to remember kings and queens of England! Memory not good!!! Good excuse for an outing to go to fairs and things. So may be find something you have wanted to learn about or do to give your brain a work out. My poor brain is exhausted but feeling useful. You know no one can tell what the future brings. I visited a dear friend who is a year younger than me,at our local hospice the other day. They have helped me realise that life with ms carries on and you must make the most of every opportunity. Stay happy, stay positive and don’t give up on dreams. : ) Mish x

Hi Anon,

Balance problems are so annoying. I was referred to neuro physio and was given exercises to do, which seem to have helped.

Standing on one leg, then the other - using a balance cushion was good. Mine is bright blue rubber disk, bought on Amazon.

Use it under the table to exercise my feet.

I agree with someone that you have to tell MS nurse about dizzy spells, they may be able to give you mediction to stop it.

Jen x

Hi, I think it was a wise decision of your`s, not to drive until you see your neuro in April.

Something i`d like to mention, is a point about when our mobility causes us to need the assistnace of some kind of aid.

I`ve had my MS like problems for going on 15 years.

They did progress rapidly, but each time i was advised to use the next aid, i resisted, feeling like you…why in my 40s, 50s or even now my 60s, should i want to make myself look older by using things I used to imagine only older folk using!

I went from a stick, to a lightweight walker, then a wheeled walker, then a vairety of wheelchairs, now i need a hoist several times a day.

So how do I view these things now?

well I know only too well that if i used none of them, i would be bed bound, house bound and damned well fed up to my back teeth!

Life is for living. This is not a dress rehearsal.

Help yourself as much as you can, by taking advantage of everything that is on offer.

luv Pollx