teenager has been diagnoised with MS and struggling to get on with the MS nurse (the only one for our area) she is misunderstanding where we are coming from as we need help and support for 16 year old to continue to follow her dreams and ambitions. so hard to deal with all the changes, has anyone else got a youngster who has been diagnoised? how are you coping?
your teenager needs to keep all aspects of life open.
health is a priority but friends, family and social interaction too.
i don’t understand how the ms nurse can misunderstand where you are coming from.
if you have contact with their friends, encourage visits and maybe small outings to get the ball rolling.
your daughter can still follow her dreams and ambitions.
if she is at school or college, go to see her tutor (one of them will have responsibility for pastoral care) and explain her diagnosis.
i can thoroughly recommend the booklet RRMS Relapsing Remitting MS available free from this site.
got to support on the orange banner at the top of this page, then there is a list on the left hand side - select publications then understanding relapsing remitting ms.
it gives a clear explanation with diagrams and helped me explain it to family and friends.
find out what is available locally for her.
the MS Society and the MS Therapy Centres have groups where the staff are helpful and everyone chats over coffee.
carers are also welcome so you could go with her and have one of the therapies, a massage maybe.
let us know how you both get on
oh and claim carers allowance too.
Have a look at https://www.mstrust.org.uk/a-z/childhood-ms I know your 16 year old probably doesn’t see him/herself as a child, but this webpage covers diagnosis for all under the age of 18.
Carole is absolutely right with regard to the ability of a young person to still follow their dreams, to go to college and have a good career.
A disease modifying drug is pretty much essential to enable your teenager to minimise relapses and their severity. It’s a shame the MS nurse isn’t as understanding as she ought to be. Hopefully the neurologist is more so.
One thing that Carole said might not be possible and that is to claim Carers Allowance. You can only get Carers Allowance if the person you care for gets PIP for Daily Living. And your child may not be entitled to that. It’s worth having a look at both benefits anyway. Have a look at Sick or disabled people and carers - Citizens Advice
Best of luck.
I’d like to ask what help and support your child you are asking for.
What are the ambitions?
What barriers do you have to overcome to follow the dreams?
she is amazing , loves sport but has had to adapt to yoga and swimming. She does drama performances and is a talented wedding and event singer. She is going to uni! wants and will be a marine biologist , she’s looking at the other end of the country , she has also applied to go to uni in USA as had amazing GCSE grades. The fatigue gets her down as she has too much to do and has never had time for sleeping during the day as feels it’s a waste of time , although she does find herself napping at times. School have been very supportive too. Very proud of her. Her condition came on suddenly and was a confirmed diagnosis 3 mths later x
OK. That’s good. Your daughter is a highly motivated and talented youngster. What support are you asking for the MS Nurse to provide that you and her school don’t already? Anthony
Sorry that you and your daughter are struggling. The NHS is slow and unforgiving but there is other support out there.
There will be help out there for your daughter too. Keep communication open. ‘Shift MS’ is a similar forum online (I find it too young!) and the Overcoming MS website organises a multitude of events (often for younger people with MS). GPs can offer counselling and so can schools. Most importantly, lots of love and chatting, and do tell her not to google ‘worst case scenario’. It is so tempting to do so but there is some sad/horrid stuff. Be patient and take each day as it comes. Since my own diagnosis (sorry, I am an older teacher) the fear subsides. Teenagers mostly are brilliant, energetic and importantly, enormously resilient. Warmest thoughts Ali.
thank you for all your helpful comments and suggestions, I will look into things more. It’s just hard to get your head around at 16 yrs , it’s so cruel. we will be positive and support her to do what she wants, just hope we can keep up x
I meant to mention https://shift.ms/ too, but forgot! You could suggest that your daughter checks it out, there are a lot more younger people on there. Not that she’d be unwelcome here, there are some younger people, we’re just more of a mixture of ages. And sometimes a site that a parent might look at would be the last place a teenager might want to look at, let alone join! Sue