My name is Tracy Wheadon I got diagnosed about 10 weeks ago !! I don’t know what to do
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A warm welcome to the forum Tracywheadon69
You've joined the forum, so that's a good start 👍👍
We're here for support, advice, a place to laugh, cry, rant & rave or play silly games!
Love Ellie.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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Thankyou EllieComment
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Hello Tracywheadon69 Welcome to our special club. You'll think of all sorts questions but they'll come when they come. xxComment
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Tracywheadon69 welcome to a great place for info and advice. Lots of people here who are happy to share their stories & answer any queries.
Sorry you've had the diagnosis & of course it does feel overwhelming. Beyond overwhelming!
Hopefully support is kicking in for you.
Take care & keep posting👍😘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.Comment
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A warm welcome to the forum Tracywheadon69
I am obviously so sorry for your diagnosis but I'm glad you've found us. The early days are so overwhelming so I hope you have the support of a professional team and also friends and family.
Take care and if you can take one day at a time.
Love Debbie xComment
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Hello Tracy and a warm welcome to our family. Very sorry you joined us but very happy to meet you. Try and take little steps and one day at a time. We are here to support you. Stay Strong. 😁👍😚😍xxBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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Hello Tracey and welcome
these first few weeks are very scary, we’ve all been there so don’t think you are alone, we are here to support each other
sAs long as there’s golf and beer I’m happyComment
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Hello there Tracy. It's hubby with mnd not me so maybe it's easy for me to speak. It took us a good 6 months for the diagnosis to sink in, so take things slowly, we've had good support.
Hubby is in his fourth year now and we've still had some great times. Life does go on xxxComment
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Hi tracy. I am 4 months in and it's a process that is such a mixed bag of emotions. Grieving for me came a few weeks in. Then I had to regain control and strangely I started to feel a tad better. I have only just started posting having read lots of others posta and taking it all in bit by bit. Some weeks I would pop on the forum once, other times daily.you can learn a lot from this wonderful family.
xLast edited by shelly21; 30 September 2021, 00:27.Diagnosed May 2021 bulbar onset als.Comment
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Hi Tracy. As others have said the early days are really difficult. But you’re now a member of our exclusive and supportive club. Ask and share whatever you want to. Love Lynne xLast edited by Lynne K; 30 September 2021, 08:52.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
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Hi Tracy and welcome. I’d say a big well done for joining us all - it took me about a year and I’ve never looked back. We’ve all been there and know how frightening it can be so it really is one day at a time. XxComment
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Looking back I knew I had MND before my diagnosis, and I couldn't wait for said diagnosis because then all the doors opened. Accepting early helps. xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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