43 posts tagged “PatientsLikeMeInMotion”

“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa

Posted December 28th, 2015 by

Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with new members in the community.

We caught up with her recently to learn more about how she copes with ALS, and here’s what we learned …

1.  Give us a glimpse of a regular day in your life. What are some challenges you face? What do you most enjoy?

I need assistance with most things now. I am in a power wheelchair 95% of the day. I will occasionally transfer to a recliner with a lift seat on top the cushion. The biggest challenge I face is constantly changing strategies to remain as independent as possible as the progressing nature of this disease takes away my ability to do even simple tasks. I can no longer speak and I use an iPad with speech software to communicate. I really enjoy getting outside to be around some plants or flowers. I was an avid gardener before ALS, and even worked at a greenhouse for 3 years.

2. Can you describe how life has changed for you since your diagnosis in 2008? 

I was in the process of becoming a teacher while working and raising a family when in 2006 my voice sounded raspy and different. I was diagnosed at Duke as was my sister 2 years before. Our father had the same MND, probable ALS. Most genetic types of ALS account for only about 10% of all cases and ours is slow progressing Bulbar type. So ours is pretty rare.

3. What inspires you to keep a positive attitude?

I think my faith helps me and the fact that most people with ALS don’t have a slow progressing form. I feel as if I have been given more time to advocate and spread awareness, so that’s what I do. I spend a lot of time in different forums, chat rooms, ALS Facebook groups and of course PatientsLikeMe trying to give and get advice.  In the case of PatientsLikeMe, I can also get data I can use to make more informed decisions regarding my healthcare and wellbeing.

4. You were recently an InMotion participant in Richmond’s Walk to Defeat ALS in October. Tell us a little about this event.

This yearly event raises money that goes to help local PALS (Person’s With ALS), like me with all sorts of stuff like equipment, support, technology, respite care and more. ALS can cost hundreds of thousands a year in the later stages and having access to equipment free of charge is one less worry we face. My local chapter has supplied me and others with a lot of equipment.

5. What has your experience been like on PatientsLikeMe? You recently posted in a forum about long-term ALS patients – what does it mean to you to be able to connect with people who are going through a similar time?

Connecting with others for support, to learn I’m not alone, and the data tracking features are very important to me. As I said before, I belong to many ALS support groups and forums but none can compare to PatientsLikeMe. It’s such a novel concept where users can set parameters and track data while getting support and answers. I have a complete history going back to my diagnosis to show any doctor, of all sorts of things relating specifically to ALS.

6. If you could give one piece of advice to a newly diagnosed person, what would that advice be?

Advice to newbies, prepare for the progressive nature of this disease by being proactive in your healthcare. Take advantage of your local ALS Chapter for equipment and support and reach out to others who have been where you are now. It’s amazing how beneficial it is to communicate with others going through similar circumstances.

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Shining a light on lung cancer

Posted November 2nd, 2015 by

What began as one awareness day back in November of 1995 has grown into Lung Cancer Awareness Month, now in its 20th year, as the lung cancer movement expanded and activities increased. Lung cancer is the second most common cancer in both men and women, but is the leading cause of cancer death in the United States.[1] Although the risk of developing lung cancer is highest in smokers (about 90%[2]), many people who do not smoke develop lung cancer each year.

Luckily, there are plenty of ways for you to get involved and help spread lung cancer awareness throughout the month of November – and year-round.

  • Shine a Light on Lung Cancer: This year’s 7th annual global event, hosted by Lung Cancer Alliance, is taking place on November 5, and is largest coordinated awareness event for lung cancer in the U.S. The lighting of the flashlights in local communities honors survivors and loved ones, and provides hope, inspiration and support for everyone touched by lung cancer. Find the Shine a Light on Lung Cancer event near you!
  • Do your part in fundraising for a cure: Participate in the event of your choice, on your own or with family and friends, and fundraise to support Lung Cancer Alliance or another lung cancer mission of your choice. Don’t forget, PatientsLikeMe will make a donation to your fundraising efforts – and provide team t-shirts – through PatientsLikeMeInMotion. All you have to do is join PatientsLikeMe, get 3 stars on your profile and submit your team details.
  • Take part in local, national or global events: Take part in one of many events hosted by Lung Cancer Alliance, our partners at LUNGevity, or host and attend your own event!
  • Spread awareness through social media: Make a difference in your social networks. Lung Cancer Alliance offers some sample posts to get started.
  • Become a #LUNGFORCEday social ambassador: Launched by the American Lung Association, the LUNG FORCE initiative aims to unite women to stand together against lung cancer and for lung health.

How are you showing your support for those touched by lung cancer this November, or in the months ahead? Share your awareness efforts, and experience with lung cancer, in the PatientsLikeMe forum, and connect with more than 3,380 others living with lung cancer on the site.


[1] http://www.cancer.org/cancer/news/specialcoverage/how-acs-fights-lung-cancer
[2] http://www.cdc.gov/cancer/dcpc/resources/features/lungcancer/

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