For PPMSers

[Marina]

From post - http://ms-people.com/forum/index.php?showtopic=814

If I can find the time/energy I shall be trying to get a PPMS group going on here, so please watch out for the post.

 

Crispy and other PPMS'ers

 

Now that the Forum is beginning to take off a bit (takes a while, doesn't it?) and people are beginning to chat more about MS as well as about everything else, would you like me to open a new separate section/forum for matters relating specifically to PPMS?

[crispy]

Hi Marina,

 

Thanks for the offer, I'm not quite sure how to answer that one. Perhaps we'll get a better answer if we wait to see what response we get from other PPMSers.

 

I will send you an Email to explain my thinking behind this, so watch your IN Box.

 

You were up and active very early today - I hope it wasn't down to trouble sleeping.

 

Take care,

[petac]

Hi Marina

I'm also a PPMSer and for my own thoughts I'm not sure that having a separate PPMS section helps too much. Looking back at another site the PPMS section gets very little content as I think some people aren't sure whether to put comments there or another more used section. I like the way we are here as to me we seem more like "family" and don't need our MS compartmentalised. Does that make sense?

Keep up the good work

Peta

[Marina]

I'm not sure that having a separate PPMS section helps too much. Looking back at another site the PPMS section gets very little content as I think some people aren't sure whether to put comments there or another more used section.

Hi Peta

 

What you say makes perfect sense to me, which in many ways was why I set up the Forum with just the one sub-forum for main MS discussion per se. Initially, I had one for MS discussion only and one for non-MS chat, but in the end I merged them both as MS would inevitably get discussed in the then non-MS forum.

 

I found that many of the other MS forums around lacked the non-MS side to them, which is why I've included so many other sub-forums for users to share - our lives consist of more than just MS, so it can be nice at times to share those non-MS moments amongst ourselves too and to develop a friendship community amongst those who understand (or want to learn more about) what it's like to have MS as well as maybe sharing their feelings, queries etc.

 

Having said that, I'd also like this forum - as a whole - to be that which you, the users and members, would like it to be - with what you'd like to have and see, and where you'd like it to be.

 

I think rather like Crispy says, that we maybe need to wait and see what, if anything, anybody else might feel about it.

[ddgorgeous]

Marina,

 

I tend to agree with Peta on this and think there is no advantage for splitting a very small forum up as it is.

 

The maximum users is 20 and even when we have tried to increase this, it has so far eluded us. To create a separate section for PPMS would possibly need a separate section for RRMS and SPMS also, as there certainly appears to be a lot more RRMSers than anything else. There is a school of thought that appears to think that PPMS is in fact a separate illness altogether and really justifies being completely independant from anything else.

 

The 'other website' has created a different section for PPMS and almost nobody posts anything on it, anyone who visits this area will see that. To visit that area more than once a week is usually not worth it.

 

If anyone can see an advantage to breaking something up further, then please post it as I am keen to learn the thoughts behind this idea.

 

With best wishes,

 

Ron

[crispy]

Hi Peta, Ron and everyone else,

 

I'm sure that no-one is trying to break the group apart, we are building a great little community here. I think you are both talking about the MSS site, who intoduced a PPMS section, and designed it like a different forum, which was not the way to go about it. All that has been mentioned here, is adding a new section, such as the Computers section, where members can go post or read, or choose to ignore it.

 

My initial idea, was to get PPMSers together using Email, but I guess that would be more likely to break up the group. The reasoning behind this was one of fear on my part. My condition has been rapidly deteriorating in recent months and I didn't want to unduly frighten new members or visitors by openly discussing things here. We all know how different each case of MS is, but to a newly diagnosed member, or visitor, I thought knowing all could be unduly frightening.

 

Having said that, it would still be good to talk about things, and find out how others are coping. There seems little in the way of medication for PPMS, but if others have found something that works for them, or a product that helps in any way, it would be good to openly discuss it here.

 

Anyone else want to join in here?

[crispy]

Hi all,

 

Am I to believe that we only have three PPMSers amongst us?

 

Even if that were the case, it would be good if we could continue this conversation. Three of us have had a say, expressing opinions, and I have come back with further comments, that I believed to be important. Since then, nothing, zilch, sweet f.a.

 

Come on guys, a forum is not a forum without open discussion.

[Lula_lulabel]

Hello Everyone...

 

I can see it from both sides... but as it takes a little digging around to find this forum, surely by then the person would have gained a little nkowledge of the disease anyway.

 

Worrying about what newbies are going to take from the discussion could effectively stop most of our symptomatic conversations altogether. I agree it could be harsh for them... but how many people have you met, whom have complained about nkowing too much?

 

I get lost in the vastness of the forum already! Perhaps if there were more PPMSers... then it would be more relevant, but with so few members active at any given moment, it would be hard to assess whether it would be of any great value to the forum.

 

that's my 10 penneth worth

 

Love Lula xxx

[crispy]

Worrying about what newbies are going to take from the discussion could effectively stop most of our symptomatic conversations altogether. I agree it could be harsh for them... but how many people have you met, whom have complained about nkowing too much?

 

I get lost in the vastness of the forum already! Perhaps if there were more PPMSers... then it would be more relevant, but with so few members active at any given moment, it

[Lula_lulabel]

Hi Crispy... firstly.... please read this with a smile. Just trying to see your point of view.

 

I read your reply several times, and I'm still not sure what you are saying.

Are you pro- PPmser's having a separate section? If it is to segragate the PPMSers from worrying the newbies about future possible relapses, to be honest, I don't think it would make that much of a difference, because most of the people I know on the internet, are not categorised as PP at all, even tho many have symptoms as bad as yours, the failing in the NHS has not helped them get a true picture of just how many have MS let alone how many are under diagnosed with perhaps RR, when they are truely more advanced. Is it not true that from primary diagnosis, it takes 5yrs for the pattern to have shown it's full potential? I would imagine anyone whom is advanced enough technologically to be able to use a computer, would be able to research MS for themselves. I understand you have many symptoms that are effecting your life, by gosh, so do I... as do many who view this site, you know me Crispy... I face things head on... I went from a working mother of 4 to a blonde vegetable in three easy steps and only in 2yrs. What I'm trying to say is that if someone is diagnosed with MS and they have enough inclination to look for a forum, then they are already researching into MS and it's possible symptoms. Times have changed since 10yrs ago too Crispy... and altho there are useless Neuros around... there are allot of us folks, like your good self, that offer support to other MSers. The feeling of isolation can be damaging enough, at least here we are amongst friends.

 

Love Lula x

[crispy]

please read this with a smile. Just trying to see your point of view.

 

I read your reply several times, and I'm still not sure what you are saying.

Hi Lula, I can only conclude that I am also losing my ability to explain myself.

 

Anyway, as I said, I'll leave it there and just try to get my diary entries running again.

[petac]

Hi Everyone and especially Chris

Before I say anything just let me say I'm not very good with words, so please bear with me and hope I make myself clear and don't mean to offend anyone. Once it was suspected that I had MS I didn't know there was anything but RRMS and at the time I was first ill there was a lot of tv coverage about RRRMS and that did scare me witless. It took my "caring" neuro a long time to even acknowledge I had MS and many years later to drop into the conversation that it was PPMS. Please bear with me if I seem to be getting off the point. I at first thought that I would go from RR to PP to SP I had no idea that PP could be so very different from RR and SP. I some ways I think the title of primary misleads people into thinking that this is the first stage and can therefore see what you mean about scaring newbies. But as I've said I was scared by RR!! MS can be scary and I think we've all been through the wanting to gain as much knowledge as we can. For myself I have learnt more about myself and my MS by reading so much on this and the MSS forum and many thanks to everyone for that. I agree that having a separate section about treatments may be advantageous, but with an amalgamated board if something relates to a treatment for RR I just skim read it and concentrate on what seems relevant to me. Sorry, I expect I've gone far too long, but hope that some of this makes sense.

Best wishes to all ( out of interest it would good to know how many of us are PPMSers or is that intrusive? )

Peta

[ddgorgeous]

Hi Petac,

 

I hope all is well.

 

PPMS here.

 

It is not intrusive whatsoever.

 

Ron

[crispy]

Hi Peta, hi Ron,

 

I said I was going to leave it there, and I will do, but after such a heartfelt response from you Peta, I felt it certainly required a reply. You explain your feelings very well Peta - Thank you.

 

I may well start another thread in the discussion lounge, and you both may like to join in there. Who knows, we might even get a few more PPMSers to join the party.

 

Have a good day,

[Marina]

We might want to consider also setting up a simple "yes/no/don't care" poll here in this thread, so that people who may not want to get involved in the discussion as such can just "vote".

 

Might that be an additional idea?

[Lula_lulabel]

good idea Marina!

[Lula_lulabel]

Hi Crispy and Petac and Ron, Marina and everyone...

 

I think it is good we have differing thoughts on this subject. I have a few thoughts tho...

 

Would a PPMS room be solely for PPMSers?

Surely a newbie with a severe first relapse, would need the experience and comforting of a PPMSer?

What if you are symptomatic of a PPMSer, but had only been given RR dx? Should you then not speak of your MS relapses incase a newbie sees?

I mean where do we start drawing that line?

 

Food for thought methinks!

 

( Dearest Crispy, my misunderstanding before was, why you were mentioning your symptoms for all to see. I am sorry for upsetting you :o)

 

Love Lula xxx

[crispy]

Hi Lula, (still a true friend x)

 

Upsetting me? - No, I'm in a constant state of being upset, that's life, not you.

What if you are symptomatic of a PPMSer, but had only been given RR dx? Should you then not speak of your MS relapses incase a newbie sees?

In reality Lula, that's never going to happen. After all, the whole thing about PPMS is that you don't have relapses. You start with strange happenings which get progressively worse.

 

As to any section being purely for anybody - I don't think anyone is suggesting that. I think the idea was to have a section restricted to members, and in that way any member could visit or post if they care to, I'm sure Marina will correct me if that is not the case.

 

I'm signing off shortly, but I'm happy to continue tomorrow.

 

All the best,

[crispy]

We might want to consider also setting up a simple "yes/no/don't care" poll here in this thread, so that people who may not want to get involved in the discussion as such can just "vote".

 

Might that be an additional idea?

Hi Marina,

 

That might be an idea, but it would need careful wording to get the true picture.

It is so easy to influence the vote with the wording used.

 

Have a good weekend,

[Lula_lulabel]

Goodmorning!

 

I think that's a good idea Crispy, restricting it to members only.

I too seem to be on a slippery slope downwards too at the moment.

Marina could set it up and we will see if it is of any great use to the forum.

 

I hope you will still come out and talk to me tho

 

Lots of love Lula x

 

 

PS We are all grown up enough to be able to stay friends even tho we may have differing view points. (I know we both think the same, I was just defining it's clarity).

[crispy]

Good morning Lula, even though it is almost afternoon now.

 

As usual I was up early, but it takes me a good two or three hours to get me shower ready. The shower's over now and I'm ready to face the world.

 

Sorry to hear you are slipping at the mo', but at least we are all here for each other.

 

Take good care,

[Lula_lulabel]

That's cool Crispy

 

I am like the walking dead at the moment.

 

Love Lula x

[dawney-t]

Not too sure if this subject is still being debated or not - but I am a PPMSer and my personal view is that I wouldn't particular want a thread solely for PPMSers. I like to think we can all join in on any subject/thread that we wish to and can't really see any particular advantage in categorising.

 

That is only my opinion, of course.

 

Dawn xx

[crispy]

Hi Dawn,

 

You've had a lot of posts to read through, but the whole point was not to restrict threads or sections to anyone, other than to members. The point was not grasped by anyone really, so I, personally, have written off the idea.

 

All the best,

[ddgorgeous]

Hi Lula, (still a true friend x)

 

Upsetting me? - No, I'm in a constant state of being upset, that's life, not you.

What if you are symptomatic of a PPMSer, but had only been given RR dx? Should you then not speak of your MS relapses incase a newbie sees?

In reality Lula, that's never going to happen. After all, the whole thing about PPMS is that you don't have relapses. You start with strange happenings which get progressively worse.

 

As to any section being purely for anybody - I don't think anyone is suggesting that. I think the idea was to have a section restricted to members, and in that way any member could visit or post if they care to, I'm sure Marina will correct me if that is not the case.

 

I'm signing off shortly, but I'm happy to continue tomorrow.

 

All the best,

Hello all,

 

The first mention of this proposed ppms section being restricted to 'members only' was on 08 April, I cannot find any reference to it prior to then. Possibly I have missed a post somewhere along the line.

 

I think it might be a good idea for a clearer explanation of what is being proposed and then asking for input, to constantly move the goalposts around and claim new things as to what is being propsed is possibly not the best way forward.

 

Once a clear idea is proposed, it has got to be better to put it to a vote as suggested, that way everyone can have thier say and nobody can claim anything unfair or untoward in any way afterwards as it was all clearly explained and they had their opportunity to express their view.

 

The way this has gone on does not appear to be getting anywhere as what was originally proposed appears to have possibly changed.

 

Take care and best wishes,

 

Ron