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New diagnosis and before diagnosis
#1

Hi everyone.... Bare with me if I have put this in the wrong section please... Yesterday my wife was told she has PPMS, she is 48 and has undergone a series of tests that I am sure you are all familiar with. I have spent the last 24 hours reading all that I can lay my hands on and have come to realise that the more I read the less I seeem to know. I have read through a number of posts on this and other sites and have just ended up chasing my a..e trying to reach some sort of place that I have no idea where it should be !! Although we have concerns that we are not able to verbalise at the moment, one thing in particular is causing probably more strife than it should.... How do we tell our 18 year old Daughter who is about to take her exams to go to Uni?? Do we delay telling her or just come right out and let her know?? Any advice really would be well received.. Cheers

 

Malc

#2

Hi Malc, I'm so sorry you're having such a difficult time.  It's rubbish isn't it.  I don't know about PPMS, still wating to find out about what sort I have.  However, I am a teacher and a mum.  There is no right answer of course, I think the parent in you will work out what's best.  I suppose it's also a case of wait until you are sure.  If your wife has this it isn't going to go away.  I think your daughter would understand that if you tell her later it wasn't that you didn't want to tell her but you wanted to act in her best interest - her exams will affect her for the rest of her life too.  I suppose I'd just say don't rush at it, there isn't a quick fix - and also, it's probably best if you and your wife are more at ease with/have had time to digest the news yourself.  Your daughter will want answers to all the questions you are looking for answers too.  Of course, she's bright, she's doing A levels, she will know that mummy is poorly but it can remain unexplained for a little while.  Go easy on yourselves and take care.  All best wishes, Lucy x

#3

Hi, it`s okay to post on any board, but there is also the PPMS board, where folk with it, hang out! I read most of the boards, so you could too.

I have been thrown into the PPMS melting pot a few times, but the various neuros I have seen, keep chucking me elsewhere too.

At least having a definite diagnosis, means you are your wife are past the big ? stage and are able to focus on what you`ve been told now.

i can see your dilemma about what to tell your daughter.

I reckon you wouldn`t want her to give her idea of going to uni, so maybe hold off telling her the news., until you 2 have got your head round it a bit more.

Reading anything and everything can indeed cloud your views. Plus, a little knowkedge can be a dangerous thing. That`s happened to me on more than one occassion. But you sound like me........you want to know what might happen to try to prepare for it.

Does your wife have visible sympotms, which may be worrying your daughter? She may fear something worse is happening to her mum.

As in all cases of MS...........whichever the type........each person presents with a variety of symptoms. There is no point asking what the prognosis is................no-one can tell you that.

PPMS is one of the types which has no treatment..just meds for managing the various problems............some people have better benefits than others.

If your wife has spasms/stiffness, baclofen can help with that. But it does take a while to find the best dosage.

If she has nerve pain, there are a few meds for that.

One thing I can promise you is this...life with any type of MS is still a life worth living..........there are many folk here who will testify to that.

We all come on this site for help, support and friendship. we even read a joke or two!  

If you need any info on benefits, google the subject to see what might be available to you.

One thing I feel really strongly about is this;

ask for help. This could be from an MS nurse, an OT (to check your home for things which would make it safer and easier for your wife) a continence advisor, physio. etc.

Hope some of what I`ve said is of help.

Oh, by the way, welcome aboard!

luv Pollx

#4

Hi Malc, and welcome happy2

 

Sorry about your wife's diagnosis - never an easy thing to take on board. However, as Poll said, there are loads of meds and other forms of support, and now she's been diagnosed she'll find it easier to get hold of them. And, while there are no disease modifying drugs (DMDs) for PPMS, there are some in trials and it may not be too long until there are things that can help to slow and even stop the disease. I'm a "knowledge is power" kind of person too, so I read everything I could get my hands on when I was diagnosed (actually, I still do!), but I really would urge a bit of caution: there are some seriously wacky websites, books and theories out there! Stick to this website and the MS Trust website until you find your feet - both organisations do some excellent downloadable booklets all about MS and its symptoms (you can also order hard copies - everything is free), but please remember that MS is a massively variable condition: we none of us have the same set of symptoms and the severity of symptoms also varies from very mild to severe - because of this, the booklets have to cover loads of things that will very probably never happen to your wife! And the things that do happen will be well supported with meds, therapy, equipment, etc IF they are needed (after all, somethings may be very mild).

 

All in all, we none of us would wish for MS, and it certainly brings challenges that we would definitely rather avoid, but it really is not the end of the world. Life goes on, and it can still be good!

 

As far as your daughter goes, I think it really depends on how noticeable your wife's symptoms are, how concerned your daughter has been about them and the whole diagnostic process, as well as your daughter's personality. Finding out that her mum has PPMS is not going to be fun, but finding out that her mum doesn't have a terminal illness may actually be a massive relief. Same goes for the fact that it isn't a genetic condition. So, I guess you have to work out which would have the bigger impact: worrying about mum having something terrible and potentially fatal wrong with her, but there being a chance that it's something easy to cure, versus knowing it's PPMS, but while it ain't great, mum will still be here for a very, very long time. (One thing: remember that kids are often well aware of what's going on, but are hiding it to try and help.)

 

Good luck with your daughter, and I hope she does really well in her exams!

Karen x

#5

Hi Malc, I'm also ppms. I agree with Seaside Belle & Poll. Maybe put off telling your daughter till after exams.

It's dead scary getting a diagnosis... but I've had mine for over 4 years now and you know it really isn't the end of the world. You can read about it until you're cross-eyed but the fact is that MS is different for everyone. No two people have the same symptoms. Some people with a ppms dx still work full-time years after getting it, a few others have very difficult problems. Most of us I think fall somewhere in the middle. You and your wife will now have to take it a day at a time. Get used to it. Your wife will slowly get to understand her own MS. What makes her symptoms worse... what helps... how to manage on not-so-good days. It takes time but she'll get there. You get to a point where you are the expert on your own MS. You can look down your nose at the neurologists... lol... it becomes part of everyday life. Sort of merges into your everyday life. It becomes normal.

I so agree with Poll. Life is still well worth living and ask for all the help you can get. You'll soon learn the ropes.

Hope your wife comes and joins us when she feels she can... on any of the boards of course... but we are a nice little elite gang on ppms board and will welcome her with open arms.

Take care and say hi to your wife,

Pat x

#6

hiya…so sorry o ear if your wife’s dx
as others have mentioned it may well be better putting off telling your daughter till after her exams but also give yourselves time to adjust to the diagnosis, and your daughter may well have questions to ak once she knows, and in Time you will be able to answer them and also put it all in a personal context. am sure your daughter will be relieved once all this is out in the open…till then sick to here and other reputable sites and draw on any support your wife is offered…all helps
em x

#7

Hi Malc, I recently was dx with RRMS. I have 2 children though they are much younger 8 and 9. My wonderful gp advised me to tell them something about my illness as I had problems with walking and often sounded like I’d spent the whole time while they were at school wrapped around a vodka bottle!
I kept them informed throughout my dx process, but in very simple terms. I only realised how it affected my daughter, the youngest, when she said she didn’t want to go back to the caravan as that was why I got sick. I’d had a relapse start when there on holiday.
I know your daughter has exams coming up and depending on her personality, it is a decision only you and your wife can make together.
The ms society offer support to families. I think they even have a support group for teenagers. It might be worth contacting them either before or when you tell her about her mum .
I am so sorry you are going through this, it’s a jhorrible time but I took comfort in being out of the limbo stage, at least I know what’s wrong and this is how I’m going to deal with it.i hope you are getting lots of support, as is your wife. I think it was worse for my poor husband to deal with as he saw his future suddenly collapse around him. I can promise you though, that so far, there is no sign of that happening.
I wish you and your family all the best and the best of luck to your daughter on her exams,
Chis x

#8

Wow.... what a fantastic group of people populate this site... A  heartfelt thanks to all that have responded, it restores ones faith in  humanity. A common theme comes through along the lines of.... HER MS is HERS, i.e although the name of the illness is common the effects are personal so learn what your body tells you. We were of the opinion that we would delay telling our daughter for all the reasons you all have outlined, I guess it just makes us feel less guilty keeping it from her when more experienced heads, and here Seaside Belle as a teacher and mum says it very well, as does Karen.... well actually you all do !!  I am sure that Tracy will be making an appearance on here once she gets her head around it all....

 

Really, THANK YOU all for taking the time out to help us. x

 

Malc & Tracy.