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Nick

It's all gone quiet!

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Nick

I suspect these days lots of folk use Facebook rather than forums, but it feels pretty quiet around here just now.

I'm one of those people who, so far anyway, have shied away from social media. That probably gives away my age, but still, I do rather prefer the old fashioned internet forum. This forum has been brilliant and I do hope people will continue to use it as I know lots of you have such great insights into what it means to have MS, a subject that can be passed on to people who have just been thrown into the deep end. Not just that, as a community we are fairly wide spread and direct contact is often difficult. That make this place special to me anyway! I like the fact that we all have such diverse backgrounds, ages, a and different interests.

 

Anyway, right now I'm just pleased the spring has arrived and that the dark days of winter are passed. It's been a rather tough year for us but as always, with things like that, things have started to calm down and we are looking forward to trying to arrange some kind of proper holiday, which last year we rather failed to do. Arranging such things when you have MS I have found to be a bit difficult. Luckily for me Kay always goes to great lengths to avoid stressful situations for me. Last year we did manage to get away with a carefully planned driving trip abroad. My car is fully adapted with left foot accelerator and steering ball. It also has the wonderful invention of adaptive cruise control, which is an absolute godsend. All this does not avoid the problem of my lack of 'mental ability' to drive any distance. Kay also drives, but even then we have to break down the distance depending on difficulty, that I am safe to achieve. Lat year we broke down the distances between overnight stops to around 150 miles. Slow but sure and with my scooter also making the trip, things were looking good. Unfortunately that's not quite how it turned out, and for other, unrelated reasons the holiday was not really a success. This year we shall try again, so keep your fingers crossed!

 

So come on, what have you been up to?

 

Nick

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Just another Warrior...........

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Sleepy
Scully

Hello Nick,

 

Me too. I hate Social Media, particularly Facebook where people seem to post load of inane pointless things....do I really need to know what people are eating for lunch!?!?!?

Even our GP surgery, who I'm on the committee for have joined Facebook....I still refuse, patients are posting all sorts of personal stuff...for all the world to read...

 

Having said that, I've been representing a few litigation matters, and managed to 'find' both people and comments that have helped my clients cases....so it has some uses,

 

I prefer forums where it's more sorta 'one to one' almost and specific to people's concerns and questions. Much more personal .

 

Perhaps it is our ages, perhaps it's us shying away from 'big brother' as it were.....as above, with people posting boasts about how they are intimidating others...it's helped my personal clients cases......I know that the police in the U.K. Use it to track criminals and assist arrests, so it has some uses.

 

Am keeping fairy week, apart from a prolonged Trigeminal Neuralgia episode, a chest infection, bronchitis....., seem to be well now though, long may it continue!

 

Best to all

Scully

X

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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Nick

It must be a generational thing but I just can't help feeling that there is something 'wrong' with the major social media concept. Somehow its pervasive while at the same time being very enticing. A good friend who will be 80 this year has fully embraced the Facebook concept and simply can't understand my resistance.

I know I 'miss out' on not being 'one of the crowd' yet I think I will refrain a little longer. I have a postcard collection originating from my Grandmother (A country lass) going back more than a hundred years. This was at a time when postcards represented a similar liberation of society as social media today. So nothing is new, and perhaps in the future we will mine the internet for hundred year old snippets of 'nothingness' that will illuminate the way things were.

 

Enough of all this, I'm going outside to enjoy some spring sunshine.

 

Nick

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Just another Warrior...........

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Sleepy
Scully

Maybe we are just becoming 'grumpy old people'!

 

I do feel that in this age if texting, emailing, and social media, the ability to have a good old 'conversation' is somewhat of a dying art.

 

Even when I was last office based, which was probably a few years back, I remember the whole systems going down,,,as they do from time to time, one of my team complaining that they really needed an answer to a question....the department who needed to give that answer was literally the other end of the office....I said " they are only over there, why don't you go and ask them?"....which was met with a look of horror...and a reply of "what, actually go and speak to them?"........"yes" !!!

 

I admit that there are needs for paper trials when dealing with cases, but honestly...

 

At a recent social gathering, more than half the people were head down, staring at the yawning abyss that is the internet or complaint that there was no wifi, rather than joining in surrounding conversations.

 

Finally, my 6 year old granddaughter has a wonderful two storey play house in the garden. After being told off by her Mum for some misdemeanour, Imogen picked up, her rag doll, her lunch, and her iPad and stomped off to her playhouse.....only to return a short while later with a thunderous look on her young face..."what's up?" I asked her, as she flung herself onto the sofa...."Nanny, the wifi doesn't reach to my playhouse"....was difficult not to laugh I admit !

 

Yup, definitely turned into a grumpy old person!

 

Scully

 

 

 

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They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Sluggish
Marina

Count me in as someone else who dislikes Facebook and who much prefers forums (despite my being an admin on one or two FB groups, and so I'm now a reluctant user).

 

This is partly because FB's privacy is no better than Google's, they track your every move. What Google and FB and any of these sites with trackers don't seem to get into their thick heads is that I don't use the internet solely for things that interest me, I use it for research and other things, which include things I positively dislike. So "serving" me with ads based on my surfing is of absolutely no use to me whatsoever!

 

As for the rest, I'm not saying Facebook can't be useful, but it's horribly user unfriendly:

 

- FB groups are useless for anything but today's posts. You can't easily see older posts, even yesterday's, without scrolling forever.

 

- You get a narrow column to read it in, in tiny font.

 

- You have a teeny box to write your post in, and an even teenier one to reply/comment in.

 

- You get short answers, as anything longer than a few lines can be difficult to read. FB (and Twitter) have "trained" people to make short posts, so it's easier and quicker to post a short quick reply, especially if you're using just your thumbs on a phone's keyboard.

 

- If it's a longer post, there's rarely any paragraph breaks, making it even harder to read, as hitting "Enter" sends the post and many people don't realise they can hit Shift+Enter twice for a new paragraph (or can't at all on a phone).

 

- You're bombarded with great big maps when people want a "recommendation" even if replies can only be phone numbers or websites.

 

- You get people squabbling or replying with useless replies.

 

- Comments (replies) are not in chronological order, depending on whether you "reply" or "comment", and then FB puts what they think is most "relevant" at the top.

 

- You have to endlessly click to read more replies.

 

- The amount of bad spelling and grammar is shocking (there, their, they're, etc). Textspeak is common - u c a lot of this.

 

- Searching is a nightmare.

 

- There's no organisation (like categorised forums, or "sections" as I call them).

 

- People can't be anonymous with invented usernames. Not everyone is happy to be seen under their real name in a group.

 

- Anybody can join a group, so who knows who might be lurking who knows you.

 

- Settings, for privacy and other, are all over the place instead of being under just one common area, making it a minefield trying to find them.

 

- There are constant endless bugs and frequent code/display changes.

 

Etc, etc, etc.

 

People spend their lives with their phones in their hands, wherever they may be. It's easier for them to keep the FB app open instead of opening a browser and going to various forums. I think I've said it before here on the forum, people have become lazy - they like FB because their groups are all on one website. For them, FB is the internet; often enough, they'll refer to an FB group as a "site" (I despair! :pullhair: ).

 

The art of proper "discussion" (as in forums) has therefore become lost.

 

This is an old topic where we talked before about Facebook groups:

http://ms-people.com/forum/topic/20195-open-or-closed-groups/

 

PS - Imagine trying to post this long reply on FB, especially on a phone, and then trying to read it!

 

PS - Not everyone uses only their phones for the internet.

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Marina

(belated DX in June '05, SPMS)

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Nick

Totally bizarre ! Here we are in a virtual world, ripping into ........a...virtual world. I do agree, but as Lori says.........perhaps we have simply turned into grumpy old people.

What a brilliant and great thing all this technology is. The big downside, as so eloquently described, is the loss of having to make our own decisions. The generation that grew up before Wendy houses had WiFi used their own imagination to make decisions. Its call play. A smart phone is a wonderful thing yet you really don't need google maps to find a pub! The technology that is making your decisions for you is also taking away your independence and in all probability is also choosing which pub you will find.

 

Cheers mine's a pint!

 

Nick

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Just another Warrior...........

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Sleepy
Scully

While we are all being grumpy....

 

Trip Advisor - you decide on a nice restaurant for dinner, you check Trip advisor.....because it's a virtual world and it's what everybody does. 5 stars ! Great food, great staff, great ambience.......next is 1 star....dreadful food, deadfall staff...just dreadful......so you go someplace else.....and it's dreadful.......yup, virtual world has chosen for us.

Oh I know we can just avoid things like trip advisor.....but we don't, so I guess it's our own fault in some way.

 

Sat nav - as a woman, I cannot read a road map, and especially while driving.....but sat nav can find our destination with ease...

Mine is the most officious and rude sat nav......oh it doesn't yell at me like my husband used to when I got it wrong. But this smug, officious computer voice seems to make me feel completely stupid ...while on a trip to Cambridge, sat nav had been very quiet for ages so I jabbed the screen to see if it was still working....the result was the bodyless voice...." continue on the A14 and wait for further instructions ! "

 

I would also suggest that the sat nav begins its instructions at around turn 5.... I'm pretty sure I know how to get out of my own street!

 

Big brother knows exactly where I've been, and seemingly knows where I'm going....even if I don't !

 

You gotta love this new world....my car also has park assist.....I press a button....it finds a gap it knows it can fit into....and while I operate the brake and accelerator....the steering wheel whizzes about all on it's own.....and parks perfectly....then smugly announces..." vehicle parked"......my sister even managed to say "thank you"....

 

What a wonderful world ?!?

 

Scully

 


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Nick

Yep, Brilliant,

 

I studied for years the 'art' of navigation only to be superseded by a small black box. A great bit of kit GPS but the 'art' part is totally missing. By the way it's a long standing joke around here that I once got lost in a city park! The art part of navigation, be it at sea or by road is the difficult bit, it explains our annoyance when the car sat nav fails to do what we want. It also explains the increase in shipping losses, Costa Concordia being a recent prime example.

My car does not park itself (wish it did) but I have fallen in love with adaptive cruise control, which I use constantly to avoid using the foot accelerator. Again it's easily predictable that as cars go autonumous, we shall see similar failings in technology to account for the human whim.

 

Lets just call the whole shooting match a love hate relationship.

 

 

Nick

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Velvet

I don't exactly contribute much to the activity here, but I still check in now and then.

 

I dislike social media type sites as well. I find forums a much more useful resource and a lot easier to navigate.

 

I've been lucky that so far since starting DMT I've not had any more relapses and am pretty much symptom free, so I try to just get on with life and work and not dwell too much on MS. But I was very grateful for this forum while I was in Limbo and after getting my diagnosis, and I hope if I need it in the future this place will still be around to offer advice and support.

I think forums are a much better environment for discussion and meaningful information, so thank you all for being here.

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Procrastinating
Stumbler

This one says it all :-

 

https://youtu.be/Z7dLU6fk9QY

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John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Sleepy
Scully

It certainly does say everything Stumbler.

Great video.....even if it meant I was 'looking down' for 5 minutes.

Scully

x


They are not brain lesions..........they are just bright ideas

 

"The truth is out there"

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Nick

Very good John, but..............um, I was watching 'In our time' on the TV and one topic revolved around young people and their phones. The conclusion was not as negative as (the very poetic) Utube video. Its a matter of balance. As for me, I have never properly engaged fully with all this stuff, that clearly reflects the generational difference. Yet think how much our generation (growing up in the 60's) was different from our parents. Today is no difference.

 

Still we seem to have generated some interest, back out to the Shed now to work on a very low tech woodwork...........you can't beat a man cave

 

Nick


Just another Warrior...........

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Nindancer

Great video Stumbler and so true.

I'll openly admit to being hooked on facebook but largely for keeping in touch with family and friends as I don't get out as much now and I'm retired now. Even my Mum catches up with meon it so it's actually really nice.

I still like forums tho and it is quite quiet here at the moment!

I do have blog to share as I gave this Fasting mimicking diet a go last year, results were good enough that I've gone back to it :wink2:

Sonia

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ptlike

Hi guess the nicer weather keeps people active in other things. Every man needs a shed nick lol

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Mal

Hello :wave3:

 

Ive not been enticed away by Facebook , just too much stuff going on

 

I think the groups on FB are not very good , they start off good but it turns into

a I've got it worse than you sort of thing , there was one it was great then it put a stop to

people having fun so that bit of entertainment ended

 

Will be trying to get on more

Mal

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Mal

Great video Stumbler and so true.

I'll openly admit to being hooked on facebook but largely for keeping in touch with family and friends as I don't get out as much now and I'm retired now. Even my Mum catches up with meon it so it's actually really nice.

I still like forums tho and it is quite quiet here at the moment!

I do have blog to share as I gave this Fasting mimicking diet a go last year, results were good enough that I've gone back to it :wink2:

Sonia

So you know a bit about diets ? looks like i may need some advice , I've not been on a diet in my life and it

​looks like I'm going have to go on one :wtf:

 

Mal x

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Marc

I looked for FB groups before I found this place but they all seem to be American when it comes to MS. I also prefer forums though.

 

I did think it was very quiet on here but that isn't always a bad thing. The busier a forum is, the less friendly it can get. Ive been on one forum with 60k+ members for over 10 years and it gets extremely fractious at times.

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It's not the hand I wanted to be dealt but I'll play it anyway.

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Nick

It comes and goes here Marc. It's been a brilliant place for me and I can never thank Marina enough for all her efforts. It's always been a friendly place along with the fact that the astonishing amount of sound advice and knowledge is better than anything else. As far as other stuff, I suppose it is simply a matter of what other people are interested in and how they relate. I like the quirky nature and the fact there are so many different people of all kinds of ages and backgrounds.

I go on a couple of other forums (Not MS related) and I have the same view as yourself. it either becomes very 'clicky' or people start telling others their own opinions (always right of course) in a completely boring way..................never found that here!

 

Nick

 

PS I've not been chucked off yet!!


Edited by Nick
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Just another Warrior...........

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Marc

Yeah, I had a feeling this was a forum that varies and that's certainly no bad thing. I like what I've seen so far, I've found people to be very friendly and helpful and, hopefully, I can be the same so I intend to stick around.

 

As for other (non MS forums), I've so often been told I'm wrong about what I can and can't do as far as my MS is concerned!

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It's not the hand I wanted to be dealt but I'll play it anyway.

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Sluggish
Marina

At one time I had 5 moderators, which shows how much busier the forum was than it is now and when it averaged 40-50 posts topics a day. It wasn’t so much that we actually needed 5 moderators, but that it was possible for 2 or 3 of them to not feel up to it on any day due to their MS.

 

This can never be a huge forum with 10s of 1000s of members or 100s posts a day, as it’s a more of a “niche” forum, for the supposed 100k people with MS in the UK. I think the more generalised a forum’s content is about, the more likely it is to have topics with contentious posts.

 

We’ve only once had a bit of trouble, when a particular group of members were hell-bent on a certain treatment (which has since been debunked), which caused disruption as well as annoyance to the rest of us. That’s pretty much the only time any member has been banned.

 

Like many a forum, this one has its loyal members, who stick with us on an almost daily basis through the years no matter how quiet, and I’m particularly grateful to them for helping to keep it going! :hearts:


Edited by Marina
Changed "posts" to "topics"
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Marina

(belated DX in June '05, SPMS)

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Sluggish
Marina

PS - It's replies like those in this topic that make my heart go "aww..." and which encourage me to keep the forum going...

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Marina

(belated DX in June '05, SPMS)

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Marc

I'm actually one of a dozen moderators on the aforementioned 60k+ member forum but there's rarely more than 2 or 3 logged in at any one time and often only 1 or even none. a few rarely log in at all these days. Lost track of the number that have been banned but it's a sad inevitability due to its size.

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It's not the hand I wanted to be dealt but I'll play it anyway.

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Nindancer

Not sure this would suit if you are diabetic, you'd need to be careful.I coped OK with it when was on Tecfidera tho so I'd imagine it's still possible.

Here's the blog anyway:

http://brokendancer.over-blog.com/2017/04/mimic-fasting-fasting-mimicking-diet-what-it-s-all-about-and-is-it-worth-it.html

 

Hope you're doing ok otherwise Mal

Sonia x

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Crappy
Happymama

You can run out of time.  I don't use FB much, I have an issue with hegemony, that and google ...

 

I'm a moderator on another forum. It started on the back of the It's not easy being green series, fronted by Dick and Bridget Strawbridge.  They started the forum (now are divorced, and you see Dick on the Chateau thing with his new missus Angel.)

 

The forum is about all things green plus a bar and a tearoom.  The woodburning thread is the most popular possibly.  The forum is a place you can take your kids, it's a very nice place to be.  I'm Happymama on there too - HN.  I joined in 2006.  It does eat my time.  We've only had to ban a few.  One for posting pictures of 'beards' - not the ones for the chin, and refusing to stop when we asked, and another for flouncing too much and being rude.  

 

Twelve years is a long time ...

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