20 posts from January, 2011

ALS Patient Interview: Never Give Up

Posted January 19th, 2011 by

We continue our series this week of getting to you the person, not just the “patient.”  Today’s interview is with “iceberg,” a member of our PatientsLikeMe ALS Community and another 2010 newsletter interviewee.   Read on to learn more about what keeps him motivated, how his condition has affected his work life and how he took part in the PatientsLikeMeInMotionTM program.  Enjoy!

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2166 (Amy) What keeps you motivated?
iceberg (iceberg)

I have always been self-motivated. I have been running since my high school days, running cross country and track in high school. I started to run again in 1978 and even ran a marathon in 1990 when I was 40. I continued to run until 1995 when my foot drop became so severe I began to trip myself.

My wife says I am just too bullheaded to give in to ALS. I think watching my grandson grow up is my motivation too. In 1998 when he was born, I didn’t know if I would see his first birthday. He is now 11.

2166 (Amy) Who do you admire and why?
iceberg (iceberg)This is a hard question to answer. I admire anyone who has ALS and continues to battle to live. When I travel to Washington, D.C., for Advocacy Days and see PALS in wheel chairs with breathing tubes and feeding tubes and see how they are fighting to live, it makes me admire them. “Never Give Up.”

2166 (Amy) How has your condition affected your work life?
iceberg (iceberg) I was a Toll Collector on the Pennsylvania Turnpike until August 23, 2009, and I am now on disability retirement. I have gradually lost the use of my thumbs over the last several years. I was no longer able to keep up with wrapping coins and counting change back to the customers. So I guess you would say it has affected my work life quite a bit.
2166 (Amy)  What’s your favorite aspect of PatientsLikeMe?
iceberg (iceberg) PatientsLikeMe has afforded me an opportunity to meet a lot of people with ALS who I have become friends with over the past several years. Some of the people that I have talked with on PatientsLikeMe I had the pleasure of meeting in D.C. over the past several years. PatientsLikeMe also supported our walk team this past summer for Walk to Defeat ALS. [See photo on left]  My thanks to PatientsLikeMe for the ability to make new friends and talk about how ALS has affected our lives.
2166 (Amy) No, thank you for being so willing to help others learn from your experiences with ALS, iceberg!

Parkinson’s Patient Interview: A Spring in Your Step

Posted January 18th, 2011 by

As you know, we like to just check in with our members to see how you’re doing as a person, not just a patient.  This week on the blog, we’re highlighting some interviews to help you get to know some of the people here just like you.  Here’s an interview with member “angela_b,” a member of our PatientsLikeMe Parkinson’s Community who was interviewed for one of newsletters last year.   Read on to learn more about what puts a spring in her step, how she copes with her Parkinson’s, and what’s she’s learning from other patients.  Enjoy!

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2166 (Amy) What puts a spring in your step?
angela_b_pd-original (angela_b)

That would have to be my new love for crafting. I didn’t realize how many ideas I had hiding away in my head until just recently. Now, you cannot even mention a shower or party, and I’ll start planning what favors to give.

2166 (Amy) How do you like to spend holiday weekends?
angela_b_pd-original (angela_b)

I am a hostess by nature – that I get from my momma – so I love to have picnics/parties at the house. Plus it’s easier for me to give the party than to go to one. I have four kids, ages 11, 8, 3, and 1, so you never know what the moods will be!

2166 (Amy) What is helping you to cope with your condition?
angela_b_pd-original (angela_b)

I have a humongous support system. My family, friends. It’s pretty awesome. Plus, my husband and I just started our own non-profit (Running for Parkinson’s) to raise money and help fund Parkinson’s related issues within our community. We run (he runs, I try very hard to…LOL) and this helps keep me motivated!

2166 (Amy) What have you learned recently at PatientsLikeMe?
angela_b_pd-original (angela_b)

I’ve learned a lot from lurking. I’ve found many answers, like my cramping when I run is dystonia, and a lot of people have the same sleep issues. I’ve found that we all have a lot of “non-parky” things in common, such as career choices, crafting, running.

We are all in this fight together. It’s great to know that I am not alone in this, but surrounded by great, loving, caring people.

2166 (Amy) Thanks, angela_b!