3 posts from November, 2007

PatientsLikeMe Update: November 2007

Posted November 29th, 2007 by

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change.

ALS Community
We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there!

MS and Parkinson’s Communities
Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community now has more than 800 members. We welcome and thank all of these new members. Please keep inviting others to join! This vast pool of shared data is what will help make PatientsLikeMe a juggernaut in MS and Parkinson’s research.

HIV Community
The PatientsLikeMe family continues to expand as our newest community, HIV, began accepting charter members last month. We expect to formally launch early next year, and we look forward to growing this fledgling community to its fullest potential. Please help us in this effort. If you know anyone affected by HIV, please invite him or her to join PatientsLikeMe today.

PatientsLikeMe member dwilliams

Happy Thanksgiving! PatientsLikeMe MS Patient Spotlight: FeliciOlivar

Posted November 26th, 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 patient each month to find out more about how he or she approaches life. This month we are pleased to feature FeliciOlivar, a two-star member.

1. What are you thankful for?
I am thankful for being able to walk. That was my worst flare of them all. I woke up one morning and fell right down to the floor. As devastated as I was that my worst fear had come to be, I didn’t let anyone know that I was petrified at not being able to walk or do anything for myself. It was a horrible time for me, but I was determined that I was going to be able to walk again. I’m glad that I can walk even if I do still trip over my own feet. I’m also thankful for the family that stood behind me through that tough time.

2. What do you have in abundance in your life?
I have laughter. If you cannot laugh at yourself, then what are you going to do? I laugh at myself all the time, if I don’t I’ll cry over nothing. The stumbles, the forgetfulness and the anger at my body turning on me after I gave it the best cookie dough in the world, this is the thanks I get. See, you have got to laugh at stuff like a fork flying out of your hand at the most elegant restaurant and running out before the food fight starts. It’s the best medicine.

3. Describe a typical Thanksgiving in your family.
We usually travel home and visit everyone, but this year we aren’t able to do that due to certain problems that have arose (i.e. gas, car repairs), so we will have to have Thanksgiving right here at home (scary since I’m cooking). The highlight is usually seeing my son eat a turkey drumstick. We take a picture every year. I hope he’ll be able to eat one this year without an ambulance ride.

4. What are your interests and hobbies?
I truly, simply enjoy nature. I love watching birds and seeing the pretty ones. Until I lived in a rural place, I had rarely seen all the birds that I’ve seen in the past year. I also like photography. I haven’t gotten a real good grasp on it, but I usually take pictures of the birds that I’m spying on. This would go hand and hand with scrapbooking that I love so much. I don’t do it much now because it’s an expensive hobby. I would like to learn to do needle work like needle point, knitting and crocheting. I like to keep busy.

5. What accomplishments are you most proud of?
I’m most proud of just being a mother. It’s hard when I have bad days, but my son knows why I don’t feel well. This past month hasn’t been good for me going through Optic Neuritis. Having one eye is not easy.

6. What are your top three motivators in life and why?
Prayer, my family and friends (count as one) and the online group that I belong to, The Urban Multiple Sclerosis Alliance. Prayer helps keep me sane. I can’t make it without prayer. My family and friends are there for me no matter what, even though at times I just want to be alone. And the group, well they understand everything I’m going through. It’s a blessing to have someone around and not have to explain what “Coggies” are (cognitive problems). Don’t you just love that nickname?

7. Which PatientsLikeMe patients have you enjoyed getting to know?
I haven’t been posting here a lot so I hadn’t got to know anyone yet, but looking at the message boards, I love seeing someone post about something that I thought only I had to deal with. It’s a great comfort to know that you are not the only one who is not in control of your body or who can’t remember anything about the previous day. It’s great that there is always a place you can go where people just like you (or at least similar to you) exist.

PatientsLikeMe member amorton

PatientsLikeMe Parkinson’s Patient Spotlight: Lynette1400

Posted November 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 patient each month to find out more about how he or she approaches life. This month we are pleased to feature Lynette1400, a two-star member.

What are you thankful for?

A loving husband and family, wonderful friends, having had an interesting and exciting life, Social Security, Medicare, and pensions!

What do you have an abundance in your life?

A) Love and laughter.
B) Time to do all the things I want to do but didn’t have time for when I worked. Because of this, I am busier than ever.

What is your favorite holiday memory?

There have been so many. When my three children were little, we spent Christmas Day at my mother’s. After dinner, she played the piano and my Dad and the whole family, including my three brother’s families, stood around the piano and sang Christmas carols while the children played with their new toys.

It was like the Christmases in our family when I was a child. After the kitchen was cleaned up, the families would all sit around card tables and play card games. The grown-ups would patiently teach us children how to play. Then after that we would have a supper of turkey sandwiches and leftovers. Then on the long drive home we four children would all fall asleep

Describe a typical Thanksgiving in your family.

We have a traditional Thanksgiving dinner with all the fixings, which is planned for about 4 p.m., but we usually get to sit down by 5 or 6 pm. Present are my husband, me, my son and his wife, my daughter and a friend, my brother-in-law and a neighbor of his. I try to include those who do not have other plans for the day or those without family here. Everyone brings something.

It is a lovely and very tiring day for me. This year my son and daughter-in-law are having the celebration at their home, and in addition to the above guests, her parents, a girlfriend and her daughter and her brother will be there. She sets up a badminton net and the younger ones participate. She is a very good cook. I bring two pumpkin pies and probably two chocolate pecan pies.

PatientsLikeMe member amorton