Team Linda ALS medical expense

My mother has ALS. She has the sporadic form. No one knows why she has it but she was diagnosed 3 years ago when she was 59 years old. It started when she kept falling down. It took another year for her to be diagnosed. She went from working a full time job to being bed ridden in a matter of a year. Now she only has a little use of her right thumb and her eyes. She had her feeding tube put in in May 2013 at the Mayo Clinic for her birthday that year. She is now going on a year of being on a ventilator to help her breathe after my dad and I resuscitated her last September. She looked at me one day started crying and spelled out on my hand “I don’t want to die.” Thus I will fight for her well-being and survival until she tell me she is done. Each time I see her I wonder if it will be the last and it becomes harder and harder to leave, but I will not stop fighting for her.

Medicare doesn’t pay all of the bills for her care. She is at home and my family pays for someone to come and help care for her in the mornings so my dad can continue to run his business to support her care and supplies. She was on hospice until she had the ventilator put in, because it is a life sustaining treatment she cannot remain on hospice. Hospice provided most of her medical supplies before the ventilator. Now a good percentage of her medical care despite having Medicare and supplemental insurance falls on the family. Oddly enough if we were to place Mom in a nursing home it would mostly be covered. Which we will never do. There is so much insurance doesn’t cover.

Awareness and donations to support those coping with this horrific disease are the only way to a cure. Whether or not you choose to donate to a cause or not is entirely up to you, but I do hope this makes you more aware at the very least and will support our fight to save our loved ones in your hearts.

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Kimberly Deissenberg 
Winnebago, IL
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