Last reply 5 years ago
Any help would help

Hello…

Hello all.

This is all new to my wife and me. Our son has recently be dx with RRMs, he’s only 16 and had his first sympton at 14. At the moment things are really tough, he’s just about to start Rebif. We have a daughter who is nearly 18, she has taken it really hard. As all you parents are aware I’m sure, talking to teenagers is hard at the best of times.

Does anyone know of any groups for young people and/or parents.We are based in North London…

Kind Regards

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stumbler
5 years ago

Hi, @paulw, I’m really sorry that you’ve felt the need to find us, especially in these circumstances.
I’m sure someone will be along soon to help you out regarding local support.
However, I’m well aware of the collateral impact of a diagnosis of MS within a family unit.
Yes, MS is presently an incurable condition, but it’s not terminal and it’s a manageable condition. It doesn’t even mean that it’s a one way ticket to a wheelchair.
Possibly, it’s being identified at an earlier stage now, which means that it can be addressed/treated earlier.
However, it still comes as a shock and usually MS is a bit of an unknown.
Take time to find out about MS. The publications available from the MS Trust (http://www.mstrust.org.uk/shop/products.jsp?catid=36) cover all angles. There’s even publications that are targeted at the younger reader. These publications may help to put things into perspective, which may help your daughter.
Otherwise, have a look around this site, see what’s being discussed and feel free to join in or pose any of your own questions. We’ve a wealth of experience and do understand your feelings and concerns.


jasfromtas
5 years ago

Hi Paulw
Really sorry to hear your news, really really crap. Thoughts going out to you and your family.
I know here (Australia) there are groups for teens, pre-teens (sadly) and parents+siblings. I am sure in the UK there are support groups too. Most of this site seems to be UK based, so I am sure someone will be able to give you some more specific advise.
Regarding your daughter I can only say that my sister took it pretty hard with me. Pulled out of her uni for that semester (since returned) and became my research queen. My Mum and Dad also took it pretty hard, but I think put on a brave face for me and lent on each other. Having talked just last week to my sister about “the dark ages” (diagnosis-starting treatment time) she said the worst thing about it was her fear for me and her lack of control – not being able to ‘save’ me. It was only when she felt like she had a purpose, research, reading up, helping me, that she felt positive about the direction of our lives.
I know your daughter is young (my sister is 25) but perhaps some task orientated “jobs” might help, during the adjustment stage?
Not sure if that help, but thinking of you, and I am sure some Brit will know of a group/support person who may be a bit more useful,
Thinking of you and family,
Jasmin


JustJones
5 years ago

Hiya…

Sorry to hear that things have been tough… and the dx has hit you all so hard.

for you guys there are plenty of support groups around… the MS society (or local branches of) run things all around the country and you’ll see the nearest one to you on their website.

I for your daughter… she may be able to get some support from your local young carers group.

every local authority area will run young carer groups… and i don’t know exactly where you are… but you said Norf London…

and these guys might be of use to you, crossroads North London… they are part of the princes trust for family carers and run young carer groups:
http://www.crossroadscarecnl.org/what-we-offer/crossroads-young-carers

you can also have a look at this website:
http://www.youngcarers.net

the support they can offer won’t be MS specific but it will help her come to terms with the changes that are having and effect on you all.

for you guys…. you may find lots of useful info on: http://www.carersuk.org

they may well list a carer support group nearby… which although not MS specific will create a safe place for you to go and vent your worries, concerns and fears.


paulw
5 years ago

Thanks for kind words & links. Paul


stumbler
5 years ago

You’re more than welcome, @paulw. Please feel free to pop in and out, asking any questions that would help you and your family.
We all exist here to help one another, because we understand the implications, the issues and the challenges.
I would say that we have a primarily young membership, but, there are also some more mature types around. So, a variety of experiences.


JustJones
5 years ago

No problems @paulw as @stumbler said… this community is for people with MS and their families and friends… it’s a good and safe place to come to.

I hope we hear from you again.


reddivine
5 years ago

Reccomend you join the National MS society, excellent article in the current mag – a teenage girl who was dx’d at 15yrs, very like your son…..it would, I’m sure hel and inspire the whole family.
There are plenty fo folks on shift in the younger age bracket.


stumbler
5 years ago

This organisation may provide some support in the shape of their latest MS in Focus magazine, which looks at many aspects of living with MS as a young person.
http://www.msif.org/en/

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