Last reply 8 months ago
Worries – newspaper

In the newspaper online today it talks about a lady who has ms who was 38 and ended up in a nursing home .

Can I ask how do we know we might not be that disabled in the future ? It really scares me and freaks me out. I just wanted to share that and get it out !

Thanks

Rachael

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stumbler
8 months ago

@rachaellouise , I too saw that article.

I consider myself fortunate that I was around with MS and I’m still relatively OK now. But, there were no MRI scanners and no Disease Modifying Therapies (DMTs) when my journey started.

Things are so different these days. Standards of diagnosis, treatment and care have all come forward in leaps and bounds. Even more so in the last 10 years.

We are all more educated, or have peer support, and understand that we need to be our own advocates, to obtain the right treatment and support.

I would therefore hope that this was a very exceptional case, with other undisclosed factors.


potter
8 months ago

MS affects everyone differently, I had two aunts that had MS before there was any DMT’s. One of them a RN was in bad shape from the start and ended up in assisted living by the time she was 32. Her sister had a problem with foot drop and never really got worse. She even learned to walk with a cane instead of a walker when she was 70 through some therapy. It is a harsh reality to face but you can’t let what might come next ruin your life. Life happens, you could get ran over by a bus tomorrow and you don’t worry about that. Get on with your life and try to make the best of it, don’t let it slip away. Potter


hmcampos
8 months ago

@rachaellouise,

I haven’t read that article but, like many more, it probably only shows the darkest side of MS. Maybe that sells better….

In any case that lady may be unfortunate to have a very aggressive MS but:

1) That does not mean you will necessarily have it too
2) DMT’s have evolved strongly in the last decade and they keep on going
3) Myelin rebuild meds are currently under heavy study
4) We all know (much) more about MS than before and we all fight on our own, either through exercise, food, healthy habits or whatever means we can

List could go on and on proving that hope is real. Be strong, keep believing and live with your MS and not for your MS. Don’t be afraid of the future, be hopeful instead. Hopeful that it will bring us all more means to make our lives even better.

H


vixen
8 months ago

Hello lovely, yes I saw and read the article too. First of all, the context is unclear but secondly, the article isn’t about mS really, its about how people who aren’t able to be supported by their families for whatever reason are placed in imapparopriate provision.

Don’t forget, this is one persons story; it is clearly a rare and unusual case. There are two million of us MSers out there and we are all on unique journeys. But then, so is every person we know, with or without MS. For example, my husband is my age and healthy. The irony is, since my diagnosis, he has developed a foot condition which means he can know not walk as well as me and I have MS! See what I mean, not one of us, whatever age, knows how our story will unfold. I know stories like that can induce panic. @stumbler makes a great point about the advance in development which has sped up over the last decade. Keep posting when you have amxieties, I’m sure it will help. Take care xx


stumbler
8 months ago

For anyone that is interested, the story is here :-

http://www.bbc.co.uk/news/uk-england-nottinghamshire-42043882


nutshell88
8 months ago

My neuros keep telling me im lucky i was daignosed in DMT’s age I will try my best to beat my fear and make a hard turn and adapt a DMT just as i adapted my ms.
But my english didnt help me understand what happenedbto this lady in the article exactly.. 🤭 all i could say i hope a miracle happens and she gets well soon.


sandwich
8 months ago

Such a sad story. My heart goes out to Joanne and her family.

I’ll be honest and say it is my worse fear. It was the day I was diagnosed and remains the same 5 years on. That said my fear has calmed down significantly and I think I’m at a point where “what will be will be”.

These days I prioritise MS when I need to. For example making sure I’m sufficiently monitored, getting on the most effective DMT and making sure I have a good MS care team. That’s all I can do and there’s no point worrying about things outside my control. The rest of the time I get on with my life without much thought of MS and what may become of me.

I have done an advanced decision should the worse happen which gives me some comfort.


billybilo
8 months ago

I think that despite of our fears, we must remember that MS is never fair, life is never fair. There are also cases of very agressive MS, where people stop walking not long after diagnosis. And none of known medications is effective for them in stopping disease progression. One of my colegues from hospital, diagnosed with RRMS, stopped walking and using hands 2 years after being diagnosed – he had very frequent, severe relapses. Since now he has tried every possible DMT – even Lemtrada 4 months ago. Lemtrada doesn’t seem to work for him either. He’s already had 2 relapses after receiving it. He wants to try HSCT next year. It has taken only 5 years for MS to destroy his normal life. I remember him saying that he rarely tells his story to other MSers, because he doesn’t want to needlessly scare anybody – he wants everyone to try living a normal, positive life, despite of MS. But I also noticed that he was a little sad, that people with MS were scared to even look at him. You know, that kind of stories also happen. So we should be very grateful to fate for our luck and try living the best kind of life we can.


sandwich
8 months ago

You’re right @billybilo

I’m very sorry to hear of your friend. Talking about advanced MS does seem a bit of taboo subject at times and it shouldn’t be. I’m on a MS facebook page run by my local ms team and people try and keep posts positive.

I can only imagine how utterly isolating and terrifying it must feel to have advanced MS.

Yes we need to live the best life we can.


rachaellouise
8 months ago

@stumbler and everyone
To be honest I worked in a nursing home when I was 16 and at college! It is the biggest fear I have . The one I worked in wasn’t a nice one at all. I saw things that not many have seen and I also thought some of the staff were not nice.

I also did some community care work when I could drive . I also saw some harrowing cases and really sad things .
Also one lady needed round the clock care , bedbound and she had ms ! I worked with several agencies and that one didn’t allow me to go to that one.
Now I have ms myself and I am frightened to death that I will end up bedbound
The things I saw In the nursing home have never left me. All kinds of illnesses and dignity stripped away.
Things play on my mind even more due to my experiences .

Tonight had some sort of flare up where my leg heavy and buzzing and right arm and I’m thinking is this just the beginning what will it look like in 10 years?

Sorry I am not very encouraging for many today but I feel I need to be myself and this is what I am thinking . I think keep it all in or say .,. Maybe in some ways it might help to talk about what’s on my mind and maybe help others to do the same instead of keeping things all bottled up!

I couldn’t bear to end up so bad! This drives me to not stop but also get depressed with it when I’m not having a breakthrough … I’m in the depressed low esteem category at the moment!
I’m sure I will get out, always seem too somehow ! Some way! Some day!

Rachael
Xx


edmontonalberta
8 months ago

@rachaellouise

Life is a journey & we all know the destination. It is the journey that makes life worth living. Enjoy it while you can…

I am sorry you are in “the depressed low esteem category at the moment” With all due respect, snap out of it. We only live once – spend as little time depressed as possible.

True story – my 1st wife was diagnosed with Scleroderma at 27 – she was dead at the age of 31. You state “I am frightened to death that I will end up bedbound” – Donna had that exact same fear. She did not want her friends showing up to visit for months then slowly dropping off. Donna knew her family would always visit – but she could not enjoy life “today” knowing they could not enjoy life for years.

She made me promise that I would end it for her when she ended up bed bound. I promised (I always keep my promises) that I would do that for her; and yes I would have ended up in jail. That weight was lifted from her shoulders & she had a great time enjoying life until “a doctors mistake” saved me from jail.

To make a long story shorter, do whatever it takes to get yourself out of depression! Make your journey through life as enjoyable as possible. There is no better plan… 😉


hollylb10
8 months ago

When I had my first proper relapse which was inter nuclear opthlamopegia (hope I spelt that correct) I sat in the hospital waiting room waiting to be seen by an eye specialist and there was a lady with MS on the news, fighting for her right to end her life! I had had other sensory issues and already has a scan that came up clear but MS was mentioned and it was a waiting game. I never really had an official diagnosis where I was sat down….it was actually a very kind ophthalmologist that said this is neurological and I just put the jigsaw puzzle together and crumbled in front of her. Any way…..3 years on and I am doing ok and my positive attitude (some say denial) and healthy lifestyle keep me going! Others may disagree but I strongly believe in mind over matter….there are things you can do to help yourself!

Message me if you want some advice 🙂


marcyg921
8 months ago

It is a scary thought but its why I try not to dwell too much on it because none of us can tell the future. Who knows in 10-20 years they might find a cure but for now I just try to live life day by day because I’ve had the treatment, I’m constantly making improvements in my life to help manage this condition but I don’t know how this condition will affect me 20-30 years time (with any hope it won’t affect me at all). All I try to do is just live life. So far I’m planning trips to Canada to see family and to go back to America in 2019. Obviously there’s a very good chance MS will get in the way again but if it happens it happens. My life was already put on hold for 3 years while waiting for diagnosis and treatment so its time to stop putting it on hold and to start living again. Plus worse case scenario if I do end up needing care, I know I have a loving family and great friends that will help with that.

Also don’t worry about being scared or voicing your concerns. There’s no real set time in how long it takes to come to terms with this condition and we’re all here to help.


vixen
8 months ago

Hello again @rachaellouise. So, your original post has gotten lots of attention! It’s unusual to come across one so young who has worked in the care profession, that’s a tough thing to do. As we see reading above, you’ve got lots of support through opinions and ideas. Do you get access to any counselling or psychotherapy? I think it would be really helpful for you to have a professional to ‘check in’with every so often. You might be able to be shown techniques to help manage your feelings and emotions when things like this crop up. I did a job once working with vulnerable communities. As part of this we had to have regular spots with a counsellor, which I really wasn’t comfortable about. But, over time, I came to find real value in having the opportunity to discuss what was on my mind at the time, I was able to report back on my coping strategies for managing tricky situations. Do you have an MS nurse who could advise you on this? I hope you’re managing to have a good Christmas, despite the BBC decorating their news site with depressing stories for Christmas! X


chezy17
8 months ago

Hey.

I’ve not read the article but then again I try and stay away from the negatives associated with MS. Life is very short and if we spend more time worrying about what could happen, you miss the good and positives of what are happening around you.

From what I know about mine, I’ve had it possibly 5 years and in those 5 years, apart from the numbness and tingling and the fatigue, I feel alot better.

It maybe that you’re feeling stressed, anxious or even run down or tired, it can make your symptoms flare up abit. I have numbness and tingling down my back, legs and arms but it’s from where I have a lesion on my spine. Those symptoms only flare up when I’m tired or I’m feeling stressed. They aren’t new symptoms. There’re like a reminder to me that I need to slow down or rest.

I was speaking to my ms nurse, other people with MS and I’m pretty sure the first 18 months are the decider in how it progresses, I could be wrong but I think that’s a positive sign :-).

Live life, don’t let it stop you from living and have an awesome New Year!!!! Xx


teresapascolat
8 months ago

Hello dear @rachellouise,
You have a strong support from all of us. Many of the things written above are so true! But certainly do NOT let sad stories get at you! Sad stories are and have been but now YOU is what matters. My mum used to say: look after yourself because only so you can look after the others…so you have the DUTY of looking after yourself…first and foremost! It might be difficult to separate the two, but you have a responsibility towards yourself, you cannot escape! Be nice and kind, and with the experience you have on your shoulders you are surely just very good at it, and now it’s time to do it for yourself. Take one thing at the time, one day at the time. Do not stress yourself on anything, be close and understanding of yourself.
Live life NOW because the future?? Who knows what will be? Nobody knows! And no, please, don’t lock things inside, do let them run out, whatever they are! Any doubts, any worries, any scary stories that come creeping up, write them in here, or shower someone who is there to understand!
Well, I must remind myself too of all what I’ve just said😉 but it works😊. Let us know how it’s going and let the sun warm your inner side😆
Teresa

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