At Times Wishing That I Could Swap Places With Them

[jonty31]

Hi everyone, I'm new here, I don't have CMT, although my daughter and two grandchildren have it. Just a straight forward question here, although important and any advice would be most helpful. If you're experiencing like myself, how do you cope, having to watch your family live with CMT

[mia160505]

Hi jonty , I have cmt and both my son do as well , our condition comes from my mums side , watching my family cope with it was and is hard , my older son can hardly walk where he's in lots of pain and very tired, so it is hard to watch it, but at the same time we have to get on with it, we can sit and get depressed but what's the point, it won't make it go away , just have to feel positive and put a brave face on for them, I'm sure there are many other mums who understand what I mean , just got to be there for them with a smile and a brave face , I hope I have helped in some way x

[jonty31 in reply to mia160505]

Thanks Mia, for your thoughtful reply, it is most appreciated. My daughter and her son and daughter inherited CMT from my daughter's father. I support my daughter and my grandchildren when and where ever I can. My daughter appreciates my support and we all try and remain positive living with CMT. Thanks again Mia.x

[Susanne20]

Hi Jonty, I haven't got CMT but my little son has got it severely. In the beginning we didn't know if he would ever learn to walk and it was difficult to see positively into the future. Now that he does walk we appreciate every achievement and focus on everything he can do and not what he cannot do. Try to accept things as they are and see your family's individual achievements, don't compare to others. We encourage our son to talk about his worries and frustrations. Although some days I have to admit I don't feel like coping and putting a brave face on and that's important too. I try to meet up with people to talk then. Hope this helps. You are not alone!

[jonty31 in reply to Susanne20]

Thanks Susanne for your reply, it's so important for all of us to share our experiences living with CMT. I only began searching the Internet for information on CMT almost a week ago. I'm so grateful for the insight that it has given me and will continue to do so.x