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The future...

I was diagnosed with RRMS 3 years ago.

I’m desperately trying to piece together an image of my life in the future, which I know sounds ridiculous… but it helps me cope with the now. I’m struggling to find info on ms as an elderly person.

Can anyone comment or give me stories- good or bad?

Before we get m.s. we take it for granted that we’ll live to a good age and remain healthy. A dx of m.s changes everything because we don’t know what the future holds. I suppose it’s a case of hoping for the best but in the back of our minds is the thought that things may not go well. Somehow we have to be positive and be optimistic but we don’t have the luxury of being confident in our future.

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every second, minute, hour, we get older and we have MS. I have had it now 17 years and no different to when i started albeit with much less mobility, but still have my sense of humour, and smile and in that 17 years i have lost friends to cancer, my beloved mother last year and my beloved husband only 3 weeks ago. so many things change in our lives on gong i never think about how i will be older with MS. I am just getting old and loosing friends and family around me and my MS is just coming along for the ride.

I am 66 classed i suppose an elderly and get a pension and its fab just chilling out all day in retirement and doing what i want when i went.

there is a lady who goes to my ms therapy centre.

she had her 70th birthday recently and has had ms since her 20’s.

apart from a rollator she appears fit as a fiddle.

she goes abroad twice a year too.

I’m so sorry about the passing of your husband. I can’t even imagine how that would feel and I really hope you’re ok.

I know the future is unpredictable and life is fragile for us all. I think I just really want to be more aware of what might await me, to help me plan for now. I have two children and we always imagined a third, but now I’m battling with myself - is it just selfish to bring another child into the world who will have to watch their mother decline?! Will I see my grandchildren? Can I walk our dogs?! Etc etc.

Too many questions but no possible answers.

Hi Amelia,

As with life before diagnosis, concentrate on what you can do and not what you can’t.

MS is not a barrier for me, it is a challenge to find out what I can achieve.

It’s all about making the most with the material you have.

Regards,

Anthony.

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Amelia - you are right - no possible answers. Because that’s the case there’s no point in asking or dwelling on the question!

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Amelia C. How old are you? How old is an old person? Age is just a number, as they say, and its bloody true. Sometimes I feel 90 and sometimes 19. You can be young in your head and yet the body lets you down.

Don’t worry too much about the future. Live the NOW and tackle problems as you hit them. MS is different for everyone and you will read a 100 different answers to this.

I’ve found myself worrying about this. Nobody knows what’s coming for them etc… but I feel we have a fast track look at being older and less able. Trouble walking, trouble gripping, trouble seeing, fatigue - ‘It’s a bit like getting old then’ as my mum observed. I’m 46 btw, which means I’m bracing myself for the ‘it’s the menopause’ comments! I try to comfort myself by thinking that, having faced some of these problems earlier, I will have come up with some coping strategies earlier too. I think it’s good - stoical - to face the potential realities, and start thinking ‘how would I manage’.

all the best, Rebecca

Things will either change or stay as they are, a saying off my Grandad. This may be true for MS. RR may stay as it is, it could change, but don’t waste a time wondering. I know (as most of us do) you wonder what the future holds, truth is, none of us know. What is happening to others, may never happen to you. Don’t spend precious time thinking ‘this may happen’ when it may not or it just becomes all consuming. As humans, we adapt to whatever is presented in our way, enjoy the now, what’s round the corner isn’t known, not for any of us, with or without MS. Tracey xx

Hi guys, just lately I have been talking to my ms nurse about the very same concern. I was dx in March and my symptoms seem to have moved along quite quickly since then. I’m 52 yrs old and the consultant thinks I may have had ms for the last 20 years probably Rams and now progressed to ppms. As I I said symptoms since March have gone quite quickly mainly the fatigue which puts me back to bed by 1-2 pm, pins and needles are getting worse in my hands and forearms. My right hand arm and leg are losing power. Bladder problems, problems swallowing. Drop foot the list just goes on and I worry what the next 5 years will throw at me.

reminded me hun, of my sisters mother in law she was 80 with MS and only went into a wheelchair about 6 years before she died not of MS but of complications to her diabetes.

thank you hun, its been horrific and I never thought i would get through it every day is a challenge, and ongoing as they had to do an autopsy, and the results were inconclusive so tests were sent, and inquest for next MARCH 2018 so never ending. My MS is so bad right now but still got to keep moving forward.

You cant plan you have to live for the now the day you cant plan for the future in the respect of how your illness may affect you as there are many other things which can get in the way.

If you feel like you would want to add to your family then do it, let’s face it there are no guarantees in life that any mother will see their children grow up or grandkids etc, who knows what the future brings my husband when to the IOW on Tuesday 26th September to check it out for us both as we wanted to move there by monday the 3rd October at 5am he died. He will never see his grandchildren married or grown up or great children, we just dont know so for me its best to live for now, and just enjoy the time we all have together. xxx

Life goes on ameliac make the most off it

hiya amelia

life will happen whether u worry about it or not!

i now have 3 grand daughters. unable to hold any of them so they (one at a time!) had to come in the bed with me! it was 3 days before i saw the eldest and we shared 1/2hr an hr together alone whilst mum waited downstairs having a cuppa-neither of us could go anywhere could we?!

life may not be as u hoped but thats the same for most-without ms!

they are still under 5 and the chair is just part of life with gran-in fact the encourage me to go faster!

take care and live-u will deal with issues when or if they arise.

ellie

RRMS is different for everybody. It’s not really something that you can plan for. A friend’s husband suffers from it and the worst relapses he’s had have involved numbness and pins and needles. I have had RRMS for 17 years and my mobility is gradually worsening. I’m not in a wheelchair yet, but I’ve had to start using a rollator to stay mobile.

If a time comes when you need a mobility aid, don’t be afraid to use one. Age is irrelevant. I used a hiking pole for years because I didn’t want to look like an old woman with a walking stick. Similarly with rollators, mobility scooters and wheelchairs. They all fill a need, so use them if you ever need them.

Other than that my advice is to take things as they come. You may be one of the lucky ones. I wish you well, and you’ll always find support and advice here whenever you need it.

I was first told I probably had MS (the diagnostic tools were not as good then) in 1980 when I was 20. The symptoms left me after about six months and I wasn’t really troubled by anything of any consequence until 2014/15 when I was hit by fatigue. I also developed a bit of a limp (drop foot) and had bouts of dizziness etc.

Was actually diagnosed in Feb 2016 and my symptoms are pretty constant now. Looking back I have had little ‘episodes’ over the years but I never thought it had anything to do with MS. I blamed hormones, virus etc etc. Turns out it was MS.

I’ve lived with no problems really for 35 years and i’m grateful for that. There’s no knowing what way this disease will go. Just go with the flow and enjoy the good things you have when you have them. Worrying serves no purpose at all.