14-yr old daughter with GDD & I have MS

josfromglos

Hi dads/ all

I cannot remember how I got involved with Netbuddy but I like what I have seen/ read so far (that is in a constructive way).
My name is Jos, I emigrated from Holland in 1995, and I am happily married to my English wife (music teacher and therapist). I understand that I should be grateful for still being in a stable relationship after reading some stories.
My 14 year daughter has GDD (Global Developmental Delay), I have MS but I can still sort of move around. We also have a 10 year old son.
I suppose I could still have been in a (P/T) job but the combination of 2 conditions proved too much at some point.
I hope to exchange useful information/ tips/ ? with you guys, as life can be very complicated at times.
All the best.

Alistair

Hi josfromglos nice to hear from you. My 13 year old daughter had the same diagnosis, GDD, but I pushed and it was changed to ASD (I knew she was, ages ago).
I know a little about MS and have worked and befriended a couple of people who have the same condition.
Good Luck and stay in touch

josfromglos

It's good to hear from you too Alistair. Yes, I will certainly stay in touch, especially now your daughter had the same diagnosis of GDD.
I have 'fought', queried and questioned my daughter's state of health for years (lack of oxygene!?), especially as the circumstances under which she was born (and the aftermaths...) gave me enough reasons to do so. But eh, we are talking here about opposing the General Medical Council....
I was more or less forced to give up when it was made clear to me that there would be a long and expensive road to go, mainly because it was difficult to prove that my daughter's condition was caused by let's call it 'human misjudgement'?
My wife had a brain haemorrhage soon after (she recovered more or less -thank God for that-), which was another reason to fight one and another.
However, when diagnosed with MS myself in 2003 enough was enough and I gave in for my family's sake...
I must say that the strength of my wife has been a decisive factor in all this. I regret that things worked out differently on your side.
All the best, regards Jos.

josfromglos

I certainly haven't gone Alistair, I check the messages on here on a regular basis, and I am very grateful to the person who suggested this site.
Some story you have Rob, one could say that you have multiple 'issues' too!
Your description of the 'events' surrounding the birth of your son could not be closer than what happened during the birth of my daughter, and this includes 'missing' information (in our case it seemed to be a printer that needed new paper??)
On top of that did my daughter have an Apgar score of 10, in spite of an utter lack of responses?!
I will never forgive myself for the fact that my wife was taken to the theatre for an emergency ceasarian, while I was smoking a cigarette outside... (quit several years ago by the way; the memory of that day helped).
She was black and blue afterwards, all the signs were there that it was indeed an 'emergency'.
All this was in 1997 and the memory of that day will stay with us forever, as will the serious problems my wife had soon after.
Also, the (locum!) consultant at the time, a Mr Azaday, claimed at the very last moment, while my wife was in agonising pain, that my wife was going to have twins (which must have been the moment that I decided to go out for a cigarette, and my wife, as I was told later, passed out...)
MS does effect memory, but some memories are too solid to crumble....
All the best to you both and to all other dads, please do not hesitate to respond (although the results of the Dutch football team is a different issue... thank God I now have a remarkable English team to support too!)

josfromglos

Hi josfromglos Hope you doing OK. I know MS kind of has its moments (sorry, but I don't know how else to put it).
Not much of a sports fan myself so this is a fairly dismal time for me!

Alistair

Hi Jos and the rest of you out there.
How has the summer holiday been? I've seen some stuff on the forum about people going away! I don't think my girl would cope in a country where they didn't speak English, even if I could afford it.
Jos, I would of replied to your long post earlier, and this is very glib of me to say, but it is hard for me to talk about MS since my best friend, who suffered from MS, died about a year ago. In his case, neglect, heavy drinking and falling over too many times. I hope you are keeping OK.

josfromglos

Hi everybody

I have not posted for a while for which I had, I suppose, 'valid' reasons. I hope you 'readers' are all OK under-the-circumstances...
My daughter ('has' GDD) was admitted to hospital a few weeks ago, after having been diagnosed, eventually, with a fractured hip.
She did hiphop around at times and occasionally complained about pain, but as she can be a copycat, my wife and I were not giving her complaints as much attention as we should have done!
She was finally admitted to hospital and operated upon in The Children's Hospital in Bristol, after an initial admission to Gloucestershire Royal Hospital.
As I was in the position to do so, and necessary because of my daughter's limited understanding of the world around her anyway, I stayed at my daughter's bedside for most of the time, day and night.
I suppose it was interesting to see how my daughter (and me with my MS issues...) would cope in a hospital environment surrounded by children/ adolescents withoùt mental issues (ànd theìr parents...).
I can say that I had, when it comes to the care, MAINLY positive experiences, although we, my wife and I, also had some negative ones with regard to some 'caring' staff in both hospitals, mainly because of their lack of understanding towards a girl with a mental disability (sorry, 'learning difficulties' is too politically correct and too vague for me and many others around us I assume).
Or maybe a mentally disabled adolescent constantly accompanied by a MS dad of dutch origine was a bit much too them?
My daughter is now back home, occasionally unattended! hiphopping again, although not allowed by the doctor just yet...; there is a reason for that temporary wheelchair!
I also had a humble private chat with one of the mothers off the ward, a lady from Wales who accompanied her son. She had already lost a son due to the MRSA bacterie several years ago she told me in a controlled way, without her prompting the subject..
That IS one of those moments that I can clearly say that things could be worse considering our own situation...
An overall good experience, even if it is for the wrong reasons!
Sorry, I now have to attend my daughter as she is waking up!.......

Alistair

Hi Jos and all other people out there
Sorry to hear about your daughter, I can really relate. My girl has an incredibly high pain threshold and I too had to spend a night with her in hospital just before Christmas. It was a weird experience for us both. On the one hand she wanted and needed me to be there but a dad supporting his teenage daughter was a bit odd for some of the, mostly fantastic, staff to understand. Funny though, since that experience she chose an 'early years' book about what hospitals are about from the library and has become obsessed with sharing it with me.
It's good to get something positive out of adversity.
Good to hear from you.

josfromglos

......and good to hear from you Alistair. Not in 'talking mode/ mood' at the moment, but I appreciate the contact. Part of the reason for that first remark is that I very much fall behind with administration/ domestic duties, which is partly due to the fact that my daughter has been unwillingly claiming me more as usual lately.
Also, the always apparent MS issues do not contribute to an easier life, as I found out in particular when 'assisting' my daughter in hospital(s).
I feel extremely lucky for being in a stable relationship Alistair, and I do feel for you not being that fortunate. On the other hand, I feel terribly ùnlucky for having MS at the same time..... no, nothing is perfect indeed....
Where do you actually live Alistair?
Take care.

Alistair

Hi jos, it's late and I'm not much in 'talking mode' right now but will try and reply more fully over the weekend.

Alistair

...and here I am! OK, I hope you understand that I do not want to patronise you in any way so it is really hard for me to talk about your MS but I imagine that your administration/domestic duties must be really hard with your condition. My friend had changing difficulties with his limbs so maybe it is hard for you to use a keyboard at times?
It would be nice to have a partner and I feel a kind of guilt that my daughter has no mother to act as roll model, it is really hard for me to help her develop as a young lady. She hates shopping with me, I'm not sure of it is to do with the environment, her ASD , being with her Dad or she picks up on my own anxiety and dislike of shopping for clothes!
I live in Dorset but lived in north Wiltshire in my youth so know Glous, Bristol and Bath well. On a happy note (did you you my 'Happy Stories' post?) my daughter was in respite last night so I spontaneously went to the Swanage blues festival. It was a rare moment where I forgot all my troubles and lived in the moment with some live music. Take it easy Jos.

josfromglos

Apologies Alistair, only just read your reply, forgot to 'turn' the page! (still have a 'CV' -just in case- but I will now remove 'accuracy' as one of my 'qualities'...).
I do not have any problems using my keyboard, the 'signals' to my hands are fully intact, it's 'just the rest of them'...
Funny that you should mention 'having a partner' would be nice....I 'have' one for you! She is a most wonderful inspirational caring friend and is on her own again.... (and is also very popular with my daughter). BUT no way I want to be involved (...?...).
ONLY if you are interested (she is 50 and very much into live music etc!), I take the freedom to pass on her email address, to yours that is....., all you have to do then is saying that you picked up her address on some dating website (was involved with that for a while not long ago).
No, I don't feel guilty of 'getting involved', as I would have appreciated it myself under similar circumstances (as simple as that).
As a said, ONLY if you are interested (she lives in Leics BTW).
Now where was I....., well let's talk about 'other things' next time.
You too take care Alistair.

Alistair

Hi Jos,
I have asked Emma (Netbuddy team) to pass on my Email to you. Don't think they were expecting to be a dating website! But I would be very interested in chatting to your friend. Also, while Netbuddy is such a great, friendly place it may to nice to share some more intimate details on a less public gallery with you.
It's been a lovely sunny day here today and I'm feeling really positive. Hope all is well with you and your family.

Heather

Dating agency open! I've sent you an email alistair. Let me know if you don't receive it.

Alistair

Thanks Heather. That was very thoughtful of you.