Jon Poll with his battle to live with ALS

My name is Jon, I am 44 years old and I have recently been diagnosed with ALS, and would like to be able to live my life as comfortably as I can. ALS attacks nerve cells, called motor neurons, that control voluntary muscles (the muscles we can control). When these cells die, voluntary muscle control and movement are lost. This leads to progressive weakness and disability. People living with ALS eventually lose their strength, the ability to move their arms, legs, and body, and the ability to breathe on their own. In most cases, their minds remain sharp and alert.

The average life expectancy for people with ALS is 2 to 5 years. However, ALS is a variable disease that progresses at different rates for different people.

My passion has been cooking and I love to see the smile on friends and family when they are enjoying one of my creations. ALS has progressed to the point where I have extremely limited use of my hands, and am unable to do a lot of the things that I love to do in the kitchen with food.

I have been told the average annual medical cost to sustain a decent lifestyle breaks down to $25,000.00 to $30,000.00 per month. That is in addition to what is covered by insurance.

In addition to medical costs, since I am no longer able to work, I need to cover all normal living expenses as well as the very expensive and unique requirements associated with this disease.

I would like to travel while I am still able to enjoy it.

I have family in Chicago, Colorado, and Oregon, My sister Rachael and her 3 year old daughter and 7-month-old son, and her husband live in Chicago and my dad Dave and brother Josh and his 10 and 12 year old daughters live with his wife near me in the Tampa area.

I love cooking and plan to continue to cook as long as I can.

I will also need specialized medical equipment to help me in everyday life. Including handicapped vehicles, and specialized wheelchairs. I will also have to have the interior of my house modified to accommodate the types of medical equipment I will be needing.

Anything you and your circle of friends, family and business associates would be willing to do to help would be greatly appreciated.