Disabled but web enabled
Learn About Paul Chambers.
See His Feeding Tube use and care videos
Learn about his life with Parkinson's Plus Syndrome > Multiple System Atrophy.
Learn how Paul Vapes For Taste.
Paul had to cut cable, Netflix and Hulu and go with an Over-The-Air Antenna in 2016 due to finances. If you would like to send old VHS or DVD's movies, etc, to Paul, please send Paul a message. There is not a genre he doesn't watch. He does use a Roku for free video content.
Paul is available for interviews or speaking engagements regarding Multiple System Atrophy, stem cell research, Medicare/Medicaid and how expanded home care benefits saves money, feeding tube demonstrations and end of life planning through Skype, Google Hangouts and with enough planning, in person. Feel free to send Paul a message through the contact form if you have questions about feeding tubes, autonomic disorders or would just like to leave a note.
This site is maintained by Paul with the help of Paul's wife, caregivers and family and friends.
PW Chambers has a rare form of Parkinson's called Parkinsons Plus Syndrome. As a result, certain autonomic functions are limited. Included in these are blood pressure and pulse, autonomic swallowing functions, requiring him to be permanently fed via a feeding tube for all food and most liquids, movement, mobility and gait issue. This illness affects nearly every function the body does naturally on its own. Paul had his feeding tube placed in April 2012.
Baclofen Pump: On July 1, 2013 Paul had a Intrathecal Baclofen Pump inserted to control his movement disorder. The Medtronic baclofen pump is part of the Synchromed Infusion System, which delivers the drug called Lioresal Intrathecal (baclofen injection) for ITB Therapy, a treatment for severe spasticity to the spinal cord. The pump has replaced two high dose medications and the results have been astounding. Although it is in noway a cure to Paul's Parkinson's Plus Syndrome, the pump has reversed Paul's condition about 7 years as far movements and spasticity goes.
On November 10, 2013 Paul had to have reconstructive surgery to the "pocket" that holds the baclofen pump. This was done by surgically "filleting" the abdomen and taking that tissue and creating a cushion and pocket to secure the pump from movement inside Paul's abdomen.
Paul went back to work in 2014 for several months for a large cable company but sadly 6 months later Paul's health would not allow him to continue to work.
Paul working from his home office in Ohio taking techincal support calls from Las Vegas.
Paul's health, mobility and temperature tolerance degraded over 2015. Temperature swings of just a few degrees started making Pauls have episodes of syncope and loss of consciousness. Even going from a heated indoor house to the outside would cause Paul to pass out. In 2015 Paul suffered 27 episodes of syncope and falls. Paul developed Autonomic Dysreflexia, believed to be spinal injury from a fall, which took away his feeling of pain and temperature from just under his breast down. Paul describes it has feeling as if the lower half of his body is asleep. Technically paralyzed, Paul still maintains the ability to transfer and very limited mobility. As of 2016 he is being fitted for a stand-up wheel chair.
In the spring of 2016, Paul suffered an episode of losing consciousness while in the bath tub when turning the shower sprayer on and being squirted with cold water and drifted under the water and aspirated bath water and near drowned. Paul's brain could not deal with the sudden introduction of cold water from the sprayer.
In 2016 Paul had to undergo a gallbladder removal surgery and in the process Paul's bile duct got severed and for almost 2 weeks Paul bloated with 1 gallon of bile per day filling up inside his body until his open surgery incision burst open like a waterfall flowing bile. Stents were inserted in his bile ducts and they eventually healed and had a third surgery to remove the bile duct stents.
When I was in my mid 30's I started experiencing issues tolerating heat and temperature changes. My muscles would cramp for no known reason. Sometimes they would go into "charlie horse" cramps and stay that way for hours or days. Eventually I started fainting and passing out when I went from air conditioned spaces to the hot outdoors, usually within a few feet exiting the house or car. I underwent a litany of cardiac testing but everything came out normal. I started having problems tripping over my feet and eventually became so weak that by the time I was 40 I had to rely on a cane. Our worse fears were realized when I went in cardiac arrest requiring CPR during a "Tilt Table" test which tested the nervous systems responses to extreme posture changes.
Just after my 41st birthday, I was diagnosed with Parkinson's plus syndrome in June 2012, which over time has affected my speech and my ability to swallow. My troubles with swallowing began in mid-2011 when I started getting aspiration pneumonia, which happens when food and liquid make their way into the lungs rather than down the esophagus and into the stomach. I began to work with a speech therapist to strengthen my throat muscles.
By late February 2012, the tricks and tools learned in speech therapy no longer worked. My hiatal bone reflexes and gag reflexes were completely gone and when I swallowed, food and liquids, including saliva, would get into my lungs. A new modified barium test showed that my swallowing was significantly worse.
By mid-March my ability to eat or drink anything safely was completely gone and as a result I lost more than 40 pounds within two months. Due to rapid weight-loss, my speech therapist called my family doctor, who after consulting with a surgeon, recommended I be placed on a PEG feeding tube. I had it implanted April 12, 2012 and rely on it for all my nourishment, medications and hydration. In 2014 I had to start using a feeding tube pump to slowly introduce feeding tube formula into my stomach over a 24 hour period because the formula was going into my feeding tube and up my esophagus and into my lungs.
My illness was progressing. By July 2012 my mobility was gone. My muscle spasms and spasticity got so bad that I was taking so much medication that I was constantly "out of it". I had several bone fractures from my muscles "squeezing" them to the point of cracking and the oral medications through my feeding tube was no longer helping. I was helpless.
By January 2013 my autonomic system was so shot that changing temperatures even a few degree's caused my body to go into shock. I couldn't go from a heated home to the outside without introducing the temperature changes to my body in a controlled manor. Even then it was torture. I no longer sweated so even sleeping, when most people get hot and cool themselves down, was a torturous experience. Most of my muscles were tight and stiff making it difficult to move or control your arms, legs, and body. Everyday life was exhausting and difficult and I required constant help to do everyday items and care. In 2015, I had 27 autonomic related passing out falls. Luckily I wear protective clothing and I only had 3 moderate injuries and 1 concussion.
The layman way I explain this temperature based shock is this. If you are stuck outdoors in a blizzard, your autonomic system attempts to preserve your life by slowing down your heart and preserving energy. If you are stuck in the desert, your body attempts to protect itself also. You and I experience this every time your brain senses a temperature change only people with intact autonomic systems figure out you went from an air conditioned house to the 90' outdoors. In my case it doesn't recover in a split moment and continues until I am unconscious, have a stroke, heart attack or severe muscle trauma.
I found out about the implanted baclofen pump therapy that would put the medication baclofen directly into my spinal cord and deliver it to the brain. I had a trial spinal tap performed where they simulated the pump's action to evaluate if the medication therapy would work for me. By the time I had this done in July 2013 I was completely immobile. Immediately my muscles relaxed from the "charlie horse" they had been in for several months and I was loose again. My muscles sprung free like all the parts coming out of an old clock. 2 days later the baclofen pump was implanted.
The pump was placed just under my skin in my abdomen with a catheter going back to my spine and attached to the intrathecal area of my spinal cord. It constantly delivers the medication to my spinal cord and to my brain. I use flex dosing which gives me a little less in the AM so I can be a little stiff to be mobile and more in the afternoon as the day warms up and much more over night so I can rest. It is filled by a needing puncturing my skin and going into the pump itself.
Before baclofen pump. After Baclofen Spinal Pump
Mobility restored and less medication intoxication!
I can do more for myself now, I am less of a burden on my family and friends and my home health aide only has to come three times a week instead of multiple shifts per day. However, my autonomic system is still gone and changing temperatures causes my body to go into shock. I get uncontrollable blood pressure and heart rhythms, as well as the baclofen isn't adjusted to meet the demand of the temperature. I am literally a prisoner in my own home.
The baclofen pump replaced about $1500 of medications a month. To have it adjusted or refilled it takes strategic planning. I have to acclimate my body temperatures going from the home to the vehicle and then from the vehicle to the facility.
I take pyridostigmine bromide, along with other medications, to control my passing out, also called syncope and neurogenic orthostatic hypotension (nOH). The first time I was introduced to pyridostigmine bromide I was in the early 1990's when I was in the US Army, and it was standard gear to protect against nerve gas exposure in the Middle East.
My primary doctor comes to my home for my doctors appointments. I have lab work, xrays, ultrasounds and other procedures done in my home and Medicare pays 80% of that. Having my doctor and many facility procedures done in my home is a new Medicare pilot program and it saves both Medicare and myself money. Every time I have to venture out of the house between May and October, in uncontrollable temperatures, It takes me at weeks to recover, costs about $100 additional per out of the house appointment. The Medicare pilot program improves my health and saves me real money.
I hate being sick. I wish my body would allow me the freedom to come and go. I wish I could go to my grandson's t-ball games. I have a good life and make the most of what time I have here on Earth before judgement day.
I enjoy exercising my brain and wit by joining in on various Hashtag wars and challenges on Twitter.
The More You Know...
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