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- J
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I'm Not Dead Yet!
Previously an avid skier, mountain biker and artist, I now find I'm in a position to use all the strength I have left to fight for my quality of life.
4 years ago while skiing in Lake Tahoe I realized a weakening in my limbs. I thought that maybe I had a flu or some type of virus but after a few months the weakness continued so I went to see a doctor. The last thing I expected the doctor to tell me was that I had ALS (Lou Gehrig's Disease) and that my life expectancy was about 5 years. It's been 4 years and I've been working hard and fighting every step of the way to try and prepare myself for my pending decline.
The second year after my diagnosis I built an automated wheel chair and attached an extended metal arm to it to enable me to continue my work as a painter. This worked for a year or so until I could no longer sit in the wheel chair.
During this time period I continued to loose the use of various parts of my body and tried to develop simple equipment to help me function at home. Equipment that I never dreamed I would have to use such as a hoist so that I could life myself out of bed and into my wheelchair to have access to the kitchen or bathroom and when I no longer had the strength to use the hoist I connected a simple vacum type machine to attach to my body while confined to my bed to help me urinate without being able to get up to use a bathroom.
I'm at a stage in my illness where I am mostly confined to my bed. I can not move my limbs and need assistance for every function in my life. Fortunately I can still talk and for the most part my breathing continues to be regular, which I'm told will be the final parts of my body to give out.
I've tried to manage my illness on my own and since I have no family I've recently resorted to asking friends to come by and take turns making meals for me or helping to wash me or move my body because it gets sore lying in the same position. These are requests that are difficult for me to ask, and is at times humiliating.
As kind and loving as my friends have been they can not give me 24 hour care which is what I now require. Insurance does not cover home health care until the time of hospice. Being an artist I've never made an exceptional amount of money and at this stage in my life my earning potential has diminished to a point of truly needing to ask for serious help.
I hope to be able to have a reasonable quality of life for the remaining time that I'm still breathing. I need a full time nurse, someone to help during the night when I begin to choke and need a person to put a breathing apperatice to my mouth and someone to be there during the daytime to help make food and feed me.
I also know there is equipment available that can make my life easier and possibly even help me to communicate in the future for when I'm no longer able to speak.
With help from caring and compationate participants of the GoFundMe Community I might be able to have access to these ammenities.
Of course this type of care requires a lot of money.
Home Health Care alone for my condition is about $4,000 a week so I'm hoping I can raise enough money to at least pay for what might be the last year of my life.
I have a website that a friend made for me last year which has my remaining art work from my last exhibit "I'm Not Dead Yet".
www.jimkimberly.com
Any purchases of my art or donated funds would make all the difference in the quality of my life and I would be extremely grateful.
Thank you,
Jim
Previously an avid skier, mountain biker and artist, I now find I'm in a position to use all the strength I have left to fight for my quality of life.
4 years ago while skiing in Lake Tahoe I realized a weakening in my limbs. I thought that maybe I had a flu or some type of virus but after a few months the weakness continued so I went to see a doctor. The last thing I expected the doctor to tell me was that I had ALS (Lou Gehrig's Disease) and that my life expectancy was about 5 years. It's been 4 years and I've been working hard and fighting every step of the way to try and prepare myself for my pending decline.
The second year after my diagnosis I built an automated wheel chair and attached an extended metal arm to it to enable me to continue my work as a painter. This worked for a year or so until I could no longer sit in the wheel chair.
During this time period I continued to loose the use of various parts of my body and tried to develop simple equipment to help me function at home. Equipment that I never dreamed I would have to use such as a hoist so that I could life myself out of bed and into my wheelchair to have access to the kitchen or bathroom and when I no longer had the strength to use the hoist I connected a simple vacum type machine to attach to my body while confined to my bed to help me urinate without being able to get up to use a bathroom.
I'm at a stage in my illness where I am mostly confined to my bed. I can not move my limbs and need assistance for every function in my life. Fortunately I can still talk and for the most part my breathing continues to be regular, which I'm told will be the final parts of my body to give out.
I've tried to manage my illness on my own and since I have no family I've recently resorted to asking friends to come by and take turns making meals for me or helping to wash me or move my body because it gets sore lying in the same position. These are requests that are difficult for me to ask, and is at times humiliating.
As kind and loving as my friends have been they can not give me 24 hour care which is what I now require. Insurance does not cover home health care until the time of hospice. Being an artist I've never made an exceptional amount of money and at this stage in my life my earning potential has diminished to a point of truly needing to ask for serious help.
I hope to be able to have a reasonable quality of life for the remaining time that I'm still breathing. I need a full time nurse, someone to help during the night when I begin to choke and need a person to put a breathing apperatice to my mouth and someone to be there during the daytime to help make food and feed me.
I also know there is equipment available that can make my life easier and possibly even help me to communicate in the future for when I'm no longer able to speak.
With help from caring and compationate participants of the GoFundMe Community I might be able to have access to these ammenities.
Of course this type of care requires a lot of money.
Home Health Care alone for my condition is about $4,000 a week so I'm hoping I can raise enough money to at least pay for what might be the last year of my life.
I have a website that a friend made for me last year which has my remaining art work from my last exhibit "I'm Not Dead Yet".
www.jimkimberly.com
Any purchases of my art or donated funds would make all the difference in the quality of my life and I would be extremely grateful.
Thank you,
Jim