781 posts in the category “Conditions”

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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From preclinical to approval: How clinical trials bring new treatments to market

Posted September 15th, 2017 by

Often we hear of new treatments becoming available, but have you ever wondered what each new treatment had to go through to get approved by a regulatory body like the FDA? Before a new treatment is approved for commercialization, it needs to go through a meticulous trial process to prove a number of things: Is the drug safe? What are the potential side effects? Does the drug do what it’s supposed to do? All of these questions and more need to be answered before a drug can be considered for approval by the FDA, so that’s where clinical trials come in. Here’s a breakdown of what’s involved in the drug development process, from preclinical through to commercialization and post-approval monitoring.

(Click to enlarge)

How can I participate in a clinical trial or find out more?

  • You can learn more about research and clinical trials by joining or logging into PatientsLikeMe and clicking on the Research tab
  • Use the PatientsLikeMe Clinical Trial Finder to search for trials that could be a good fit for you
  • Check in with local associations and hospitals to see if they are recruiting for any trials
  • Talk to your healthcare provider/clinician to see if there are opportunities they are aware of and how you can participate
  • If you’re a member of PatientsLikeMe, make sure you consistently update your profile so we can let you know about research survey opportunities that are right for you

Interested in finding out more about how PatientsLikeMe members are impacting change in the clinical trial sphere? Check out these stories:

It’s Clinical Trials Day, and patients are driving change

“My expertise is as a person with Parkinson’s”: Member Lisa brings the patient voice to drug development

Bringing the patient voice to clinical trials

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