Paul Chambers

is creating Uncertain Roads, an end of life diary

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Hi. I'm Paul Chambers. You may know me on Twitter as FeedingTubePaul.

People said I have a story to tell, so on July 31, 2018 I started telling it here.

When I was in my mid-thirties I started experiencing odd medical issues. For a few years the diagnosis wasn't certain. In 2012 my health deteriorated fast. I was forty. In April 2012 I had to get a feeding tube, which I still have to this very day. Not long after I got better from the surgery I made a Youtube video about it, demonstrating how I eat now because most people think a feeding tube is just a bandaid to get better after an illness or car wreck or something to keep someone alive for a few weeks.

Eventually the diagnosis was made. I have Parkinson's Plus, Multiple System Atrophy. (MSA-A). It's a fast and progressive terminal illness with a mortality rate of 3 to 6 years after diagnosis. As a result, certain autonomic functions, the things your body does by itself, are failing or malfunctioning. Included in these are blood pressure and pulse, autonomic swallowing functions, requiring me to be permanently feed via a feeding tube for all food and most liquids, mobility and gait issue. 

Multiple System Atrophy (MSA) is the current name for disorders once known individually as Striatonigral Degeneration, Sporadic Olivopontocerebellar Atrophy, and Shy-Drager Syndrome. MSA is a rare progressive neurological Parkinson's Plus disorder that causes widespread damage to the autonomic and motor functions of the nervous system. The autonomic nervous system controls organ functions such as heart rate, blood pressure, digestive system muscles, perspiration, and urination. Symptoms of MSA include: reduced ability to show facial expressions; difficulty chewing or swallowing; disruptions in sleep patterns; dizziness or fainting (postural or orthostatic hypertension); frequent falls; incontinence; loss of fine motor skills; loss of ability to sweat; movement difficulties such as loss of balance, shuffling, gait changes; slow movement, difficulties with posture, and tremors. People with MSA may also experience vision changes, voice, and speech changes. The symptoms of MSA are very similar to Parkinson’s disease, but progress faster. The damage to the nervous system is more widespread in people with MSA. They generally do not experience the cognitive decline that is common among people with Parkinson’s disease. The pathological lesions of MSA consist of accumulation of abnormal alpha-synuclein protein in glial cells, but the cause of MSA is unknown. It occurs in both men and women, but is more prevalent in men in the late 50s to early 60s. People with MSA generally live 9 to 10 years (3 to 6 after diagnosis) after symptoms appear. There are no periods of remission from this disease.

What's it like being a dead man walking? What is my daily experiences and deep thoughts. I hope to convey them here in written words, chats and video.

It's not all gloom and doom. I will share my deepest thoughts, past memories, current struggles and the way I overcome obstacles that block my path along the journey down the Uncertain Road.

People say I have a good sense on humor. Of course, those may people drink too much alcohol. 

I choose this platform because people said I have a story to tell, a story that people need to hear. Your support will also provide me a path to self-sufficiency. 

Feel free to follow along this journey down an Uncertain Roads.

I may post past memories, current events and subjects that interest me in my new journey.

I also will attempt to post 4 or 5 times a week. If you see a typo or grammar issue, please let me know. I won't be offended.

Thank you for your support.

$45.59 of $500 per month
When I reach $500 monthly I will do a Ask Me Anything video once a month.
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