Hi! I am 34 and recently diagnosed with limb onset. I have two children aged 2 and 4. If anyone else is in a similar situation with small kids it would be good to connect. Thanks
-
-
Welcome to the gang floflo your in the right place for help, support, advice and love. ๐๐ค๐๐xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐ค๐๐ค๐xx -
I don't know if you will find similar families, but there are many members that have not yet posted anything. It feels like the main posters are all well over 40, i am 66, nearly double your age. I will keep my fingers crossed for it to be Kennedys or another very slow progression version. You sound very matter of fact, but I assume that is not how you, or your family feel. My heart goes out to you allMum died with MND in 1979 โ My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.Comment
-
Hello Floflo. I'm sorry you you find yourself with us. I'm sure that some others in a similar position to you will be touch. This cursed thing affects us differently. Hopefully you will have slow progression. All my love. xxComment
-
A warm welcome to the forum Flo.
My children were 3 and 5 when I was diagnosed, so I know what you're going through. I found it very hard to reconcile my prognosis with leaving my young children behind, but I was really helped by having counselling, so I really recommend it, even if it's not 'your thing' (it wasn't mine but I was happy to be proved wrong ๐)
I won the ALS/MND lottery though as, against the odds, I am a long survivor (in my 15th year) I am severely disabled and I have been dependent on others for a long time, but, together with my husband, have raised my children into lovely, normal and well-adjusted young adults of nearly 18 and 20 years of age. Yes, it's had its challenges and I was not able to physically do much of what I wanted, but I was a loving mum and was there for them. And, what parents sail through parenthood unchallenged anyway!
Don't give up hope.
Love Ellie.
โDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
โComment
-
Hi Ellie, it was great for you to share your journey bringing up your children and proud of your kids who are now young adults.I really hope that parents of young children can be inspired by what you have shared.Certainly not an easy ride.Best wishes
Mary x
Comment
-
floflo Welcome. You will get loads of support here from people who are on are same journey or whose loved ones are. I sincerely hope you are on the slow journey. Nevertheless do feel free to ask whatever questions you have, nothing is either silly or out of bounds. The most important thing is to find time to laugh itโs the best medicine
RichardRichardComment
-
Hi Flo, sorry that youโve had to join us on this journey whilst your so young and a mum of little ones. I hope that you have slow progression so that you can see your children grow up liking Ellie did. Lynne xLast edited by Lynne K; 6 June 2021, 07:53.ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.Comment
-
Welcome flo,
You will learn how to cope with support from our members. Ellie is a great example of how to cope with adversity and raise a young family plus her vast knowledge knows no bounds. You can be sure of great advice from members.Iโm going to do this even if it kills me!Comment
-
floflo Hi, Iโm very sorry that youโve joined us in the forum, but youโre very welcome. Iโm older than 34 but I have children and young grandchildren and I can just about begin to imagine what this experience might be like for you. Youโll find a wealth of experience here, lots of different viewpoints and some great banter and supporters. For my part, I was a Citizens Advice adviser for 10 years and this has helped me to navigate my way around the benefits issues, equipment providers, NHS trusts etc etc. Iโve drawn a little map for myself and I have more than 30 different people and organisations providing support. It can be very confusing! Different people deal with this challenge in different ways. Iโve tried to plan ahead and stay at least one step ahead. Thatโs my way of pretending Iโm in control as events unfold! Please get in touch if I can help. Best wishesDiagnosed October 2020 - See my blog at https://www.myneurodiary.comComment
-
PeterPan any advice you can share on here would be gratefully received. ๐๐ค๐๐xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐ค๐๐ค๐xxComment
-
Hi floflo
it's very nice to meet you. Like others have said we are a great bunch on here and feel together we are strong. You will never be alone.
love and hugs Denise xxxwhen i can think of something profound i will update this.Comment
-
Hi floflo, Iโm 41 got 4 kids 23,10,8,3 itโs a terrible situation we are in but we got to make every day count and make as much memories as we can , I found it so hard at first , still struggling after 3 months since diagnosis, anti depressants helps and just accept the situation we are in and power on xx
if u would like a chat anytime me and my partner will always be there for uComment
-
Hi Flofllo.
I am so sorry for your diagnosis... An MND diagnosis devastating for anyone but having small children makes it even more heartbreaking. I hope your progression is slow and that you can be comforted in some small way from the experience of others.
A warm welcome to the forum... Im glad you've found us.
Love Debbie xComment
Comment