Hi my name is Linda and I have Motor nerone disease.my mum and granny had it
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Hello and welcome Linda.
I guess you have knowledge of the disease and management of symptoms based on your genetic link. Although we are no further forward with a cure or even a treatment to slow progression than we were 30 years ago, there has been progress in improving our quality of life.
I hope you will keep in touch and I wish you all the best.
BarryI’m going to do this even if it kills me!
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Welcome to the Forum, Linda.
Sorry MND has had such an impact on your family.
Signicant advances have been made in inherited ALS/MND, notably in SOD1 & C9orf72 genetic mutations, which I hope will benefit you in the coming years.
Take care.
Love Ellie.Diagnosed 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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Hello Linda
I send you strength and best wishes
As a recent diagnosed MND sufferer I find this forum so helpful and has made me appreciate that I am not alone. I am grateful to be able to communicate with other MND sufferersI have the ability to cope with this and I can still be the best person I can be. This is my life - if I am happy others around me are happy too
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Hi Linda - sorry you've joined the club. Have you had bloods sent for gene testing by your consultant? As Ellie says things are moving now on some of the familial gene mutations (particularly the two she mentions). Promising Trials are in progress for these which may be of interest to you if you have one of these mutations (I'm not sure about the recruitment status though). All the best.Best
Robin
Diagnosed 05/2017 Familial ALS Limb onset
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Hi Linda, very sorry about your diagnosis and your family history. It must have been a worry for years. I have the C9ORF72 gene fault and my niece has tested positive for it. Take care and chat soon, LynneALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
I'm staying positive and taking each day as it comes.
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