Hello all, my name is Lynn and I am new to the group. My sister was diagnosed with MND 12 months ago and the heart breaking news has devastated the family. I'm hoping that this forum will help all of us.
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Hiya Lynn
Sorry you have had to find yourself here, but a warm welcome.
Feel free to ask anything. Friends and family can have a lot of questions, and there is a lot of experience and knowledge available here.
Best wishes to you all.Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring. -
Hello Lynn and welcomeFoxes Never Quit 💙Comment
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A warm welcome to the forum Lynn, sorry to hear that your sister has MND.
Hopefully she has good support from the professionals.
Love Ellie xx​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Lynn Hi Lynn so sorry to hear about your Sister. I hope she and your family are coping the best you can. I care for my husband who has had this condition for almost five years. This forum is great for advise, information, a laugh and a good old moan with tears on occasions. Thinking of you all.xxComment
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Sorry to hear about your sisters diagnosis Lynn. There's lots of knowledgeable and supportive people on the forum. It is heart breaking when a family member is diagnosed xComment
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Hi Lynn
good that you've found us. We are all here for you.
Denise xxxwhen i can think of something profound i will update this.Comment
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A warm welcome from me also Lynn, xxLost my lovely husband on 31.12.22, diagnosed with ALS on 15.12.21.
Alison ♥Comment
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Hi Lynn, welcome to this wonderful forum full of amazing, brave, courageous, funny, supportive, loving and warm people. So sorry your sister's diagnosis has bought you here.
My mum and I found the forum a huge help (she was diagnosed March 2020 and passed away last September). I would sit with her every night whilst she relaxed in a bath to share the comments, and she would laugh and cry. There are also some incredibly useful tips on the message threads for how to cope practically with all the many changes that MND throws your way. I hope you feel the sense of kindred spirit present here on the forum and it gives your family strength to meet whatever challenges lie ahead.
All the best, DeborahComment
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Welcome to the forum LynnStarted limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.Comment
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Thank you all for welcoming me to the forum. All of a sudden I don't feel as alone now in this awful situation. I am so frightened of what my sister has got to battle with in the future. Its the saddest time ever.Comment
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Hi Lynn glad you have found and joined us, though of course so sorry for the reason you are here. Wishing you all strength as you face the challenges. Love, Heather xDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!Comment
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My sister has ALS bulbar. She's trying to be brave. I can't imagine how it is for her to deal with. I'm scared of asking how things are going as afraid of upsetting her. We were so close but we seem to be drifting apart. I love and miss her so much.Comment
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My Dad has ALS Bulbar as well (diagnosed May 21, first symptons may 20). It's hard to see them going through it.
It's difficult sometimes to know what to say but now is the time to be honest and say how much she means to you and to ask her how you can support her best. I think just knowing that you're there will be a big comfort to your sister.Comment
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Thank you so much for your kind words.Comment
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