Hello, I have been visiting this forum every day since my diagnosis in November, but was feeling too timid to introduce myself until now. I have already gained so much useful and practical information, as well as being encouraged by the positivity of the majority of members. It has really been a huge help, so thank you to everyone! I am trying to stay positive and am determined to keep doing everything I can, for as long as I can, while accepting there are going to be many changes and difficulties as I progress. So far my hands are mainly affected, with a little weakness in my legs and my voice gets very tired at times, usually after talking too much. I look forward to contributing a bit more to the forum from now on.
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Diagnosed November 21, ALS limb onset, started in right hand June 2020 -
Welcome Jane
It is a great support for me as a carer for my husband. Sorry you have joined the club.
Best wishes
DonnaDonna
Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020. -
Jane A warm welcome to the forum Jane and thanks for taking the brave/daunting step of making your first post - I know it's not easy...
My onset site was also a hand. Looking forward to getting to know you.
Love Ellie xxβDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Hi Jane and welcome. Glad you braved your first post. XxDiagnosed May 2021 bulbar onset als.Comment
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Jane Hi and welcome. I am fairly new here too but, like you, have gained a lot of useful information from this forum. Sorry you have to be here. xxBulbar onset diagnosed Nov 21. No speech but limbs ok so far.Comment
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Hi Jane welcome. Good to see you are keeping a positive attitude,it isnβt easy at times.Comment
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Jane welcome and glad you've introduced yourself....look forward to reading your postsπππ»Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.ββββββComment
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Hiya Jane
Welcome to the gang.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.Comment
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Warmest welcome Jane very happy you made this decision but very sorry you're here. We are always here for you. Stay Strong. πͺππβ€οΈxx
Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong π€ππ€πxxComment
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Hi Jane, don't worry the first one is the hardest!
It sounds like you and I had a similar onset and I love your attitude, I think positivity really helps with this disease.
Rich
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Hi Jane and a warm welcome to the forum.
Well done for making your first post which is the hardest. Im so sorry for your diagnosis but im glad you've found us as it's a good place for friendship and support.
Take Care,
Love Debbie xComment
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Jane Well done and welcome! Acceptance and positivity are both really helpful in my experience although both are hard to sustain at timesDiagnosed October 2020 - See my blog at https://www.myneurodiary.comComment
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Hi Jane πFoxes Never Quit πComment
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Hi Jane you sound very similar with onset to my husband. Its a great group full of useful advice, humour(which we all really need
) and friendship.
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