5 posts from August, 2007

PatientsLikeMe Parkinson’s Patient Spotlight: iowa

Posted August 15th, 2007 by

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview one member each month to find out more about how he or she approaches life. This month we are pleased to feature iowa, a two-star member.

What is your favorite time of day?

Well, when I was first diagnosed 2 1/2 years ago, it was the first five minutes [of the day]; things went downhill in succeeding minutes due to my very low stamina.

Nowadays my favorite time happens to be the first five minutes as well, but as a prelude to a wonderful day. That’s when my wonderful husband of 33 years brings me my morning cup of coffee in bed made to exact specifications. The coffee I mean. In these five minutes while I am regaining consciousness, I sip the sweet brew and reflect on how blessed I am and thank the Blesser.

And then, being an incurable Type A, I make a list of some sort, which, in retrospect, is kind of silly since being an incurable Type E (easily-distracted), I rarely stick to it. My second favorite time of day is naptime, from which simple pleasure I am rarely distracted.

What makes you laugh?

Almost anything, mostly because laughter releases endorphins and having frugal Dutch ancestors, I figure any drugs I can get for nothing is a plus. Plus, it loosens up my face, like when I began using the Neupro patch, which lists as possible side effects compulsive behavior such as A) “increased sexual desire” and B) “gambling too much.” Three minutes after I’d applied the first patch, my wonderful husband of 33 years queries expectantly, “Well??” To which I responded, “Nothing in category A, but ya wanna play Bingo?”

What would people be surprised to learn about you?

Considering what I’ve already shared, probably not a blessed thing. I’m your ordinary 52-year-old coffee-sipping, nap-loving, laughing, Bingo-playing gal. And not many of you would be surprised that I have found being diagnosed with PD to be a God-rediscovering experience, since [many of] you have had a similar experience.

How has PatientsLikeMe improved your life?

It might be too soon to know, but I suspect reading about and comparing notes with other ordinary real people will be helpful, not to mention inspiring. Inspiration is good. Right up there with laughter. And coffee. And naps.

PatientsLikeMe ALS Patient Spotlight: thornbal

Posted August 15th, 2007 by

At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we’ve decided to interview a PALS each month to find out more about how he or she approaches life. This month we are pleased to feature thornbal, a two-star member.

Where do you find joy?
I find joy in my family and friends, especially my two daughters. I have really enjoyed every day this summer with my daughters home on break from school! We all enjoyed reading the latest Harry Potter book! Also, I find joy in everyday things like reading the chat board on PatientsLikeMe and watching my favorite soap opera General Hospital (one thing about a soap opera… it is never a repeat! LOL). During the school year when my daughters are at school and my husband is at work, I always enjoy watching movies, television shows, and reading books… all online. And, there’s always Starbucks! Or just looking out my computer room window at my little flower garden, watching the birds and listening to all the sounds of nature.

What person do you admire most?
I don’t think there is any one person I admire most. I admire everyone living with ALS. Really, anyone living with a terrible illness… just to do what it takes to “keep on keeping on” is admirable.

How have you evolved since your diagnosis?
Like most people, I used to be so wrapped up in the “business” of living… working 40 hours a week, working around the house, running errands, etc. Since I was diagnosed, I have been able to weed out some of the things taking up my time that were suddenly not so important any more. When I still worked for Maid Sailors, I cut down my work hours and spent less time cleaning my house.

In the past several years, I have spent more time with family and friends, have traveled more, have spent more time in my garden, etc. Even though those everyday tasks still have to get done, I spend a lot less time on those tasks than ever before and more time doing the things I enjoy.

I was never an extremely religious person. I do, however, now consider myself a much more spiritual person. I have sought and found the answers that are right for me to some of those “big questions” about life.

What have you learned from PatientsLikeMe?
I have been able to read other people’s opinions and views on so many different topics. I have learned that oftentimes when dealing with ALS, the answers to my questions and the support from other people dealing with the same problems can easily be found here.