Hello. My husband is newly diagnosed. We have yet to tell our teenagers and I’m wondering if anyone can signpost me to some literature that support us in this. I have lots of downloaded pdfs but I’m hopeful for some sort of booklet that will support is in the conversation with them. Many thanks.
Have a look at https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis/telling-people There are many useful webpages on the MS Trust website which can help you to understand the diagnosis as well as telling other people, children included.
There is also https://support.mstrust.org.uk/shop?prodid=137 it seems to only be available as a pdf rather than a booklet.
Hopefully, you’ll find the right way to tell your children. Don’t forget that your husband will probably be fine for years to come. It’s not an automatically disabling condition. And if he has relapsing remitting MS, hopefully he will soon be taking a disease modifying drug (DMD) that will with luck stop him having damaging relapses.
Best of luck.
Thankyou Sue, we’ve not been told which type of MS it is yet. I will look at the links you’ve sent. We are seeing his main consultant in a few weeks. He’s lost stability in his one leg already and is having issues around urgency. But I hope, from reading lots in the last few days, that this can be delayed with a good treatment plan. I think j will be visiting here often. Thankyou for making me feel welcome.
i was diagnosed in 2008 with rrms.
my sons were 17 and 19.
the eldest was in australia on a 12 month visa.
i sent for the booklet understanding rrms from the ms society.
it explained it clearly with diagrams showing how the immune system attacks the myelin sheath.
it really helped my boys to understand.
the eldest had just completed an apprenticeship as an electrician.
he latched onto the diagrams and said that the system was knackered and could need a complete rewire!
Ours are almost 16 and soon to be 13, so I’m hopeful having a back up of factual information will help us in explaining to them both. Love the rewire references. And yes if only.
have a look for videos from shift.ms (I think they have a youtube channel) there could be something to help explain MS to youngsters
Thanks for this Mick, we will take a look. Appreciate that.