847 posts in the category “Openness”

The ALS battle forces changes

Posted September 25th, 2017 by

Jim Burton in Dalton, Ga., in January 2015 while on a freelance assignment for a statewide newspaper. Photograph by Gibbs Frazeur.

A guest blog by member Jim Burton, the ALS Warrior

 

A harsh reality of progressive diseases like ALS is that your body is constantly changing. After my ALS diagnosis in January 2013, I noticed that the progression seemed to happen in stages. After losing some degree of capacity, I’d settle on a new plateau, which became my norm for a while. The plateaus have become shorter, and the declines have become more pronounced.

Neurologists call ALS a progressive disease, but to my family and me it’s digressive as my health declines. In turn, the digression forces change as today I can’t do what I did yesterday.

The biggest changes happened early on as I lost the ability to walk and began using a motorized wheelchair. As dramatic as the change appeared when I became a de facto paraplegic, the new plateau felt manageable. With a handicap-equipped van and hand controls for driving, I maintained most of my independence.

For several years after the diagnosis, I worked as a freelance journalist not only writing stories, which I could do from my home, but also going on location for the photographs. In one week, I traveled alone about 900 miles throughout Georgia and stayed in several hotels. Two years later, I had digressed to yet another plateau, and that independence became history.

Transitioning to a motorized wheelchair represented a radical lifestyle change. Now the disease has reached my shoulders, arms, and hands, creating new and different challenges.

Jim Burton in Dalton, Ga., in January 2015 while on a freelance assignment for a statewide newspaper. Photograph by Gibbs Frazeur.

Recently, I’ve made another major adjustment. Practicing journalism and doing location photography has become impractical. Just this year, I’ve lost the capacity to type, which I’ve done since the ninth grade. I now produce copy like this blog with talk-to-type software, and I’ve written four novels. The capacity to continue writing has kept me “in the game.” Though fiction is a new genre for me, I’m growing as a writer and continuing to exercise my creative capacity as a communicator. This new discipline keeps my mind sharp and my motivation high to press on and live as fully as possible even with my digression. Still, new challenges arise daily.

Jim Burton speaks with M.B. Howard, a former colleague, during the twenty-year reunion July 29, 2017, of a former Memphis-based nonprofit where they both worked. The trip from Atlanta to Memphis would have been impractical for Burton, so the organizers recommended an adjustment that allowed him to participate via Skype. Photograph by Bill Bangham.

In my home office, I have a workstation with a desktop computer and printer. When first diagnosed, I worked daily on my final doctoral writing project and used the printer constantly. Normal functions included loading paper, changing ink cartridges, loading documents into the feeder, and of course retrieving the printed pages. Each of those seemingly simple tasks now exceeds my physical capacity. The most frustrating challenge has been the inability to retrieve a printed piece of paper that lays on a shelf about four inches off the table. Unable to raise my hand that high, I discovered a way to work around that challenge. By placing my stapler beneath the shelf, I can put my hand there and then reach the printed paper. Another problem solved. These incremental changes that allow me to solve new challenges, create hope. And with every accomplishment, ALS loses.

Several years ago, I determined that I would not see myself as an ALS patient or victim. I’ve chosen to be an ALS warrior because I fight this disease every day along with thirty thousand other Americans and their families. Whether large or small, each victory matters.

I encourage you to remain determined each day in your battle to defeat ALS.

Jim Burton is a writer based in Atlanta who frequently writes about his ALS journey at http://life-bluezone.com/blog.html.

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Team of Advisors member Kimberly shares part two of her insurance series

Posted September 20th, 2017 by

 

Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors and is living with autonomic neuropathy, a rare disease which forced an end to her career as a Registered Nurse. In part 1 of her insurance series, she tells the story of how eight of her doctors became out-of-network overnight, and how she navigated the system to replace those providers. In part 2, she shares tips and insights into what to know when dealing with insurance companies, what kind of documents you should take note of and how to understand your pharmacy benefits. Here’s what she shared…

 

Most of you have probably played the game “telephone” when you were younger. The first person whispers something to the next and it goes down the line of people until the last person says what they were told. 99% of the time, the result was absolutely nothing related to the original statement. Things got misconstrued, wording got changed, and as a result it was totally wrong. Well the same goes for health insurance and healthcare in general. The saying, “If it isn’t documented, it didn’t happen,” is used all the time.

Unlocking good habits

Documentation is the key to healthcare. There are many times when we speak to someone who passes that message along to another person, and your original question has likely been reworded in some form. If you don’t remember anything else from this blog, here is what I want to plant in your head: Document! How many times have you called a doctor’s office or insurance company, had a conversation and then hung up the phone without giving it a second thought? How many times have you taken notes during conversations or written a summary afterwards regarding the content? My guess for many of us would be zero, zip, zilch, nada! You’ve always assumed that the information that was passed along would be correct and that whoever was answering your questions was documenting everything you said.

Start making it a habit of keeping a notebook for your healthcare conversations. That way if there is ever a question of what was discussed, you can refer back to it. If possible, use patient portals if they are available through your doctor or insurance company. Most, if not all of them have messaging features, which is a simple way to ensure things are documented. My practice has always been to attempt to send messages for non-urgent matters. This can also be used for evidence if anything becomes a legal issue.

Knowing your coverage inside and out

No matter what insurance you have, it is essential to know what doctors and facilities are covered. If you have private or employer-based insurance, who is in your network? Are there differences in your in-network vs. out-of-network coverage?

A handy place to find this information is on your insurance company’s website. Most companies have a link that lets you search for doctors and facilities. Your insurance will have your PCP (primary care physician) listed already – make sure that it is correct and update it if there is a change.

Do you remember the pile of paperwork that you received when you got your current insurance? Did you read it? I mean REALLY read it! If you’re like many consumers, you probably skimmed through your Summary of Benefits and were able to see a brief overview of what your deductible, copay, premiums, and out-of-pocket maximum amount were. It also described the difference between coverage for in and out-of-network coverage.

The Certificate of Coverage is going to be your “bible,” if you will. It is the 70+ page document that goes into every detail you ever wanted to know about your coverage. This is a document that I highly recommend you read. If you ever have doubts or questions about anything, this is where the fine print is at. It also will address how to file an appeal or grievance.

Taking a closer look at the types of insurance

Maybe it’s time to look for something more affordable or perhaps you are just coming off someone else’s plan. No matter the circumstances, insurance is something that can be very confusing. Premiums, deductibles, copays, blah, blah, blah. What does it mean? That’s what I can imagine going through your head. Brace yourself for a tidal wave of information.

If you’re wondering what the different types of insurance are, you’re in luck. It’s time for a bare necessities lesson (minus the singing and dancing). Check out this handy one page I wrote that shows the types of public and private insurance available.

Understanding your pharmacy options

Often there will be a Pharmacy Rider, which will list the tiers or classifications of medications for coverage. A rule of thumb is that a generic drug is always less expensive than a brand name. Some patients are unable to tolerate generics or experience a different response than with the brand name, if that’s the case you can ask your provider to file a prior authorization form with your insurance company showing you’ve tried generic alternatives of the drug which have not had the desired effect, and you’ll need to be prescribed the brand name version only. Once again, this information can usually be found in the certificate of coverage or by simply calling customer service.

In addition to your pharmacy coverage, there are many programs available for patients with private or employer-based insurance. Almost all pharmaceutical companies have financial assistance available or will offer copay cards for newer medications. This is the case very frequently for injectable medications.

Also, don’t hesitate to do an internet search. There are a lot of free drug discount cards available. However, many of them cannot be used in conjunction with insurance. That is a detail that you will have to clarify.

I truly hope that this blog has been helpful. There are so many different things that go on within a single policy for one patient that it can be overwhelming. Always ask if there is ever doubt, and DOCUMENT. Don’t play the telephone game!

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