At first it was the thumb spasms and then the terrible discovery: an incurable motor neurone disease that left her only a few months old.
Alyssa McClum-Hatton first realized something was wrong when she began having thumb spasms while combing her daughter. In 2013, after losing the use of her arm, she was diagnosed with a motor neuron disease that forced her to give up her job, the Manchester Evening News reported.
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From thumb spasms to motor neuron disease
“When the doctor told me I had motor neuron disease (Mnd) I didn’t even know what it was – the 39-year-old explains – it was also deteriorating and my outlook on life wasn’t entirely rosy. I came home stunned by a post in my hand on Mnd and was basically told there was nothing they could do. I got home and we had a new boiler installed and all the gas guys were there and I went out and sat in the rain and cried. I think I stayed there all night“.
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What are motor neuron diseases?
Motor neuron diseases are characterized by the progressive degeneration of nerve cells involved in muscle movement. This in turn leads to the deterioration of the muscles stimulated by these nerves which weaken and are no longer able to function normally. This limited disease therefore affects the patient’s ability to walk, talk, eat, and ultimately breathe. The most common motor neuron diseases are: ALS, primary lateral sclerosis, progressive muscle atrophy, progressive bulbar paralysis, and pseudobulbar paralysis. Currently, doctors do not know the exact causes of all these diseases.
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“Then came the moment when I was afraid: I tell my six-year-old daughter and I don’t terrify her at the same time“.
So remember those moments Alyssa. “Somehow I did and made a pact with her that I would not die. This still keeps me strong after nine years“. Elsa is now unable to walk and has lost the use of her arms. It can watch TV independently using only one finger and thumb to use the remote control. She is no longer independent and has caregivers who do everything for her, from feeding her to washing her, and sometimes when she’s too tired, they speak her name too. Elsa has over 350 symptoms of MND, including chronic fatigue, eye problems, persistent skin rashes, kidney stones, and nausea, and can have up to 200 of these symptoms daily.
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She does not give up
Doctors say she has six months to live, but she still struggles and thinks differently: She said she intends to live long enough to see a cure for her devastating disease. “I have a doc that says I’m under six months old, but I don’t listen to this stuff. I will survive long enough until someone finds the right treatment to save me. My soul is still very strong and cannot be easily broken. My daughter Isabella is amazing inside and out she is very polite and really fun and so lovely to be with her so I will stick“. A fundraiser has now started buying a new wheelchair for the woman and trying to help her daughter financially because she can no longer afford the costs.