6 posts tagged “Amy Morton”

Patient Interview: “A Sense of Togetherness, Love and Unity”

Posted December 17th, 2010 by

This week’s “Treat Us Right” theme focused a lot on the sentiments and data you share every day to help others learn more about your real-world experiences.  We, at PatientsLikeMe, also like to just check in to see how you’re doing as a person, not just a patient.  Here’s an interview with member “jesus reigns,” a member of our PatientsLikeMe Fibromyalgia Community who was interviewed for last month’s newsletter.   Read on to learn more about what puts a smile on her, her attitude on life, her favorite holiday traditions and more. Enjoy!

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2166 (Amy) What puts a smile on your face?
mama-full (jesus reigns) My children, my church family and the holidays.  Christmas is my favorite holiday, so I get to enjoy all of those things at the same time.  I am very sentimental, so it doesn’t take much for me to get emotional.
2166 (Amy) How would you describe your attitude on life?
mama-full (jesus reigns)
My attitude on life has changed quite a bit since I became ill with fibromyalgia.  I used to think that everything had to be done each day, just so.  I was a master in multi-tasking and could get by on six hours of sleep a night.  I would take on more and more tasks outside of the home, church assignments, school activities and so on.  My day was always full of things to do, and not enough time in which to do them.  I used to feel guilty when I couldn’t fulfill all of my obligations to everyone, and try that much harder to please everyone.

Now, my attitude is that life is meant to be enjoyed, not worked through.  I have learned to delegate tasks around the house to my children, instead of trying to do it all myself.  I cut down on my outside activities drastically, even having to drop out of our choir in church for a while.  I am still learning how to pace myself, and to understand that being ill is not my fault.

In knowing this, I am past feeling guilty about the things I can’t control.  Because God is my priority, my trust and help lie in Him, so I am taking life as it comes, while my faith is in Him.

2166 (Amy) What is your favorite holiday tradition and why?
mama-full (jesus reigns) Christmas is on the top of my list.  My favorite holiday tradition is my family and I going to our candlelight services at midnight at our church on Christmas morning.  We usher in Christmas by singing Christmas songs and lighting candles in a circle around our church, each member holding a candle.  It is our way of putting Christ first for the day, and acknowledging that this is our first priority.  It gives us a sense of togetherness, love and unity.
2166 (Amy) What features of PatientsLikeMe do you use most?
mama-full (jesus reigns) I use the update pages the most.  It is very handy, because I can keep track of my symptoms whenever I want to.  I also like the way that I can use this to print off [my updated history] for my doctor’s appointment.
2166 (Amy) Thanks so much for sharing, jesus reigns!

An Interview with DannyD to Kick-Off ALS Awareness Month

Posted May 7th, 2010 by

It’s ALS Awareness Month!  Did you know there are more than 4,500 patients with ALS (PALS) in PatientsLikeMe’s flagship community?  We’ll be updating you all month on what is being learned by and from our PALS, so stay tuned.  To kick us off, here is an interview with one of our long-time, three-star members  – DannyD.  Read on to find out what he recently told our very own Amy Morton about living with hope, making resolutions, being impulsive, and learning from PatientsLikeMe.

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2166 (Amy) What gives you hope?
44

(DannyD) People give me hope. I know there is an army of people and organizations out there working to cure ALS while continually finding ways to maintain quality of life until there is a cure. Even in these tough economic times, people are still giving of themselves, whether it is their time and/or money. I even saw somebody with a tab open, reading an Opploans.com review, considering taking out a loan to donate. Moreover, I think in the last 10 years we’ve made more progress into understanding ALS than we’ve made in the previous 100+ years, and as my disease process is progressing very slowly, I’m optimistic that I will see a cure in my lifetime.

2166 (Amy) What are your resolutions for 2010?
44 (DannyD) I don’t usually make resolutions, because I think you can set yourself up for failure. But I do strive to be a better person, by being more patient, understanding and tolerant, which is most challenging for me. Historically, I think I’ve accomplished that but only in baby steps. I do try to learn something new every day and teach something to someone, and I will continue to do that in 2010.

 

2166 (Amy) What’s the most impulsive thing you’ve ever done?
44 (DannyD) I’m generally not very impulsive, so I would have to say in 1990 when I was living in New York and just prior to getting married.  I went to work on Friday for a 3-11 shift as a paramedic and was greeted by three of my closest friends, who hijacked me away to begin what would be a two-and-a-half-day bachelor party. They shackled an eight-pound bowling ball to my ankle for the entire weekend. They had made arrangements to have my shift covered, took me to dinner and then back to the volunteer firehouse for a huge party. The next morning we got on a chartered bus for a day in Atlantic City and gambling at the casinos on the boardwalk. It was a heck of a weekend.
2166 (Amy) What would you like to learn from PatientsLikeMe and its members this year?
44 (DannyD) I started as a beta tester here and have watched it grow into the largest online community of patients helping patients. With all the restrictions put in place by the HIPAA laws, this website has transcended the status quo and become a great tool in helping patients fight this disease and several others. Truth be told, for purely selfish reasons, I would like to learn this website is no longer necessary for the ALS community because the cure is here!
2166 (Amy) A beta tester?  Wow.  Well, thank you for sharing with us today and every day since you joined, DannyD!