Chambers.PW

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Learn About Paul Chambers. 

See His Feeding Tube use and care videos

Learn about his life with Parkinson's Plus Syndrome > Multiple System Atrophy.

Paul's writing at Patreon

 Donate to help Paul meet his needs at paypal.me/FeedingTubePaul or for a $2.00 donation:


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Privacy Policy


http://www.chambers.pw Privacy Policy
Google AdSense
Fair Information Practices
Fair information
Practices
COPPA
CalOPPA
Our Contact Information
This privacy policy has been compiled to better serve those who are concerned with how their 'Personally Identifiable Information' (PII) is being used online. PII, as described in US privacy law and information security, is information that can be used on its own or with other information to identify, contact, or locate a single person, or to identify an individual in context. Please read our privacy policy carefully to get a clear understanding of how we collect, use, protect or otherwise handle your Personally Identifiable Information in accordance with our website.
 
What personal information do we collect from the people that visit our blog, website or app?
 
When ordering or registering on our site, as appropriate, you may be asked to enter your name, email address, mailing address, phone number, Social Media User Names or other details to help you with your experience.
 
When do we collect information?
 
We collect information from you when you register on our site, subscribe to a newsletter, fill out a form or enter information on our site.
 
How do we use your information?
 
We may use the information we collect from you when you register, make a purchase, sign up for our newsletter, respond to a survey or marketing communication, surf the website, or use certain other site features in the following ways:
 
      To personalize your experience and to allow us to deliver the type of content and product offerings in which you are most interested.
      To improve our website in order to better serve you.
      To allow us to better service you in responding to your customer service requests.
      To send periodic emails regarding your order or other products and services.
      To follow up with them after correspondence (live chat, email or phone inquiries)
 
How do we protect your information?
 
Our website is scanned on a regular basis for security holes and known vulnerabilities in order to make your visit to our site as safe as possible.
 
We use regular Malware Scanning.
 
Your personal information is contained behind secured networks and is only accessible by a limited number of persons who have special access rights to such systems, and are required to keep the information confidential. In addition, all sensitive/credit information you supply is encrypted via Secure Socket Layer (SSL) technology.
 
We implement a variety of security measures when a user places an order enters, submits, or accesses their information to maintain the safety of your personal information.
 
All transactions are processed through a gateway provider and are not stored or processed on our servers.
 
Do we use 'cookies'?
 
Yes. Cookies are small files that a site or its service provider transfers to your computer's hard drive through your Web browser (if you allow) that enables the site's or service provider's systems to recognize your browser and capture and remember certain information. For instance, we use cookies to help us remember and process the items in your shopping cart. They are also used to help us understand your preferences based on previous or current site activity, which enables us to provide you with improved services. We also use cookies to help us compile aggregate data about site traffic and site interaction so that we can offer better site experiences and tools in the future.

We use cookies to:
      Help remember and process the items in the shopping cart.
      Understand and save user's preferences for future visits.
      Keep track of advertisements.
      Compile aggregate data about site traffic and site interactions in order to offer better site experiences and tools in the future. We may also use trusted third-party services that track this information on our behalf.

You can choose to have your computer warn you each time a cookie is being sent, or you can choose to turn off all cookies. You do this through your browser settings. Since browser is a little different, look at your browser's Help Menu to learn the correct way to modify your cookies.
 
If you turn cookies off, some features will be disabled. It won't affect the user's experience that make your site experience more efficient and may not function properly.
 
However, you will still be able to place orders .
 
Third-party disclosure
 
We do not sell, trade, or otherwise transfer to outside parties your Personally Identifiable Information unless we provide users with advance notice. This does not include website hosting partners and other parties who assist us in operating our website, conducting our business, or serving our users, so long as those parties agree to keep this information confidential. We may also release information when it's release is appropriate to comply with the law, enforce our site policies, or protect ours or others' rights, property or safety.

However, non-personally identifiable visitor information may be provided to other parties for marketing, advertising, or other uses.
 
Third-party links
 
Occasionally, at our discretion, we may include or offer third-party products or services on our website. These third-party sites have separate and independent privacy policies. We therefore have no responsibility or liability for the content and activities of these linked sites. Nonetheless, we seek to protect the integrity of our site and welcome any feedback about these sites.
 
Google
 
Google's advertising requirements can be summed up by Google's Advertising Principles. They are put in place to provide a positive experience for users. https://support.google.com/adwordspolicy/answer/1316548?hl=en
 
We use Google AdSense Advertising on our website.

Google, as a third-party vendor, uses cookies to serve ads on our site. Google's use of the DART cookie enables it to serve ads to our users based on previous visits to our site and other sites on the Internet. Users may opt-out of the use of the DART cookie by visiting the Google Ad and Content Network privacy policy.

We have implemented the following:
      Remarketing with Google AdSense
      Google Display Network Impression Reporting
      Demographics and Interests Reporting
      DoubleClick Platform Integration
 
We, along with third-party vendors such as Google use first-party cookies (such as the Google Analytics cookies) and third-party cookies (such as the DoubleClick cookie) or other third-party identifiers together to compile data regarding user interactions with ad impressions and other ad service functions as they relate to our website.

Opting out:
Users can set preferences for how Google advertises to you using the Google Ad Settings page. Alternatively, you can opt out by visiting the Network Advertising Initiative Opt Out page or by using the Google Analytics Opt Out Browser add on.
 
California Online Privacy Protection Act
 
CalOPPA is the first state law in the nation to require commercial websites and online services to post a privacy policy. The law's reach stretches well beyond California to require any person or company in the United States (and conceivably the world) that operates websites collecting Personally Identifiable Information from California consumers to post a conspicuous privacy policy on its website stating exactly the information being collected and those individuals or companies with whom it is being shared. - See more at: http://consumercal.org/california-online-privacy-protection-act-caloppa/#sthash.0FdRbT51.dpuf

According to CalOPPA, we agree to the following:
Users can visit our site anonymously.
Once this privacy policy is created, we will add a link to it on our home page or as a minimum, on the first significant page after entering our website.
Our Privacy Policy link includes the word 'Privacy' and can easily be found on the page specified above.

You will be notified of any Privacy Policy changes:
      On our Privacy Policy Page
Can change your personal information:
      By logging in to your account

How does our site handle Do Not Track signals?
We honor Do Not Track signals and Do Not Track, plant cookies, or use advertising when a Do Not Track (DNT) browser mechanism is in place.

Does our site allow third-party behavioral tracking?
It's also important to note that we do not allow third-party behavioral tracking
 
COPPA (Children Online Privacy Protection Act)
 
When it comes to the collection of personal information from children under the age of 13 years old, the Children's Online Privacy Protection Act (COPPA) puts parents in control. The Federal Trade Commission, United States' consumer protection agency, enforces the COPPA Rule, which spells out what operators of websites and online services must do to protect children's privacy and safety online.
 
We do not specifically market to children under the age of 13 years old.
 
Fair Information Practices
 
The Fair Information Practices Principles form the backbone of privacy law in the United States and the concepts they include have played a significant role in the development of data protection laws around the globe. Understanding the Fair Information Practice Principles and how they should be implemented is critical to comply with the various privacy laws that protect personal information.
 
In order to be in line with Fair Information Practices we will take the following responsive action, should a data breach occur:
We will notify you via email
      Within 1 business day

We also agree to the Individual Redress Principle which requires that individuals have the right to legally pursue enforceable rights against data collectors and processors who fail to adhere to the law. This principle requires not only that individuals have enforceable rights against data users, but also that individuals have recourse to courts or government agencies to investigate and/or prosecute non-compliance by data processors.
 
CAN SPAM Act
 
The CAN-SPAM Act is a law that sets the rules for commercial email, establishes requirements for commercial messages, gives recipients the right to have emails stopped from being sent to them, and spells out tough penalties for violations.
 
We collect your email address in order to:
      Send information, respond to inquiries, and/or other requests or questions
      Process orders and to send information and updates pertaining to orders.
      Send you additional information related to your product and/or service
      Market to our mailing list or continue to send emails to our clients after the original transaction has occurred.

To be in accordance with CANSPAM, we agree to the following:
      Not use false or misleading subjects or email addresses.
      Identify the message as an advertisement in some reasonable way.
      Include the physical address of our business or site headquarters.
      Monitor third-party email marketing services for compliance, if one is used.
      Honor opt-out/unsubscribe requests quickly.
      Allow users to unsubscribe by using the link at the bottom of each email.

If at any time you would like to unsubscribe from receiving future emails, you can email us at
      Follow the instructions at the bottom of each email.
and we will promptly remove you from ALL correspondence.

  • Chambers.pw  uses Twitter’s conversion tracking and tailored audience products for this website for purposes of conversion tracking and serving ads targeted to users’ interests, including the storing and accessing of cookies. Unless you opt-out at Twitter you consent to these activities. You can opt out of Twitter’s interest-based advertising, through Twitter (currently found here).

Contacting Us

If there are any questions regarding this privacy policy, you may contact us using the information below.
 

http://www.chambers.pw
US 50

Fayetteville, Ohio 45118

United States

Last Edited on 2016-10-02

Now lets Learn About Paul
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About Paul




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.

Currently Paul tutors seniors twice a week and by appointment on computer usage and troubleshooting. As a result of his employment, Paul only "earns" about $3.00 per hour of his wages due to decreases in public benefits. Paul would be eligible for additional public benefits if he didn't work. However Paul insists on working even though doing so is against his financial interests.

The Medicare Home Infusion Site of Care Act of 2015

Baclofen Pump


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.

Want To Help Paul Out?


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.

Paul's 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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