"When I Walk"

 "When I Walk" by Jason DaSilva is a film I first saw last summer at the Museum of Fine Arts in Boston with Abe. It premiered at the 2013 Sundance film festival and later that year had its theatrical release. It now will be aired on PBS tomorrow, Monday, June 23rd.

 

Jason DaSilva is a film maker and after being diagnosed with primary-progressive MS, he decided to document his journey.  Jason was 25 years old when he received his diagnosis and like all of us MSers had our lives turned upside down.  Jason has a lot of challenges and his condition gets worse as he goes from walking, to needing a cane, a wheelchair and now a scooter.  Along the way, Jason meets Alice and they fall in love and get married in 2010. They now have a son, Jase. Alice becomes Jason's caretaker as well, and at times that is difficult. Not only does she help him with everyday tasks, but she also helps him with this film. (And now being a mother and Jason's caretaker.. I don't know how she does it! Kudos to Alice!!) Check out the website at http://wheniwalk.com.

 

During Jason's filmmaking, he came up with a great idea for an app called AXS Map (pronounced access map) where everyday people can post places from restaurants to stores that are truly handicap accessible. Getting around on public transportation is extremely difficult if you are not able to walk, which you will truly understand once you see this film. Often when people with walking aids like a wheelchair finally get to their destination they find there are few steps, and therefore not handicap accessible. How frustrating after a maybe 2-3 hour commute that would take a mobile person 30 minutes!! AXS Map will help those who still want to go out find places that they are accessible. Find out more about this incredible project at http://wheniwalk.com/axs-map.

 

In the last Momentum MS Magazine, Jason DaSilva was featured. Read his story here and more about the film. http://www.momentummagazineonline.com/reel-life-ms/

 

The film premiers on television tomorrow, Monday, June 23rd.

Locally, it airs at 10pm, but here is the link to find out exactly what time it will be aired in your area. http://www.pbs.org/pov/wheniwalk/

 

This is a powerful film and I urge you to watch. Share with your friends and family so they can watch too and learn more about what it really means to have MS. Jason has spread MS Awareness and continues to do so. He has really become an activist for all of us MSers and I could not be prouder!

 

Now let the rest of us help spread MS Awareness too!

 

 

 

Bean's Spring Update

It's been a while since I've made a post. I haven't been feeling the best as I have been getting a lot of headaches and fatigue. While working a full time job, these aren't the easiest symptoms to deal with. I have a hard time falling asleep and started a new medication to help me sleep through the night. The periodontal office where I work has been going through renovations and keeping the office open during the renovations has been challenging at times. Also, I have been having asthma issues (my inhalers are no longer working) and I am scheduled for testing next week to try to figure out what's going on with me. (Look forward to the next post to find out!)

The past few months have also been busy as I am spending time with my sister and my new niece, Melanie. Melanie was born premature on February 7th (my anniversary with Abe!) but now is growing fast and becoming stronger and stronger every day! I visit my sister, her husband and Melanie on the weekends and help out any way I can. I have been enjoying seeing Melanie grow and her developments. She now smiles and I look forward to hear her giggle!


In April I participated in Boston's Walk MS for the 6th year. Walk MS is such a fantastic event and I am proud to say I raised $3,673 and in total Team Kaliope raised $4,353!  It always is amazing to see the amount of people who come together to find a cure for MS. The Boston walk was in a new location this year, and we walked 3.5 miles down Commonwealth Avenue by Boston University and looped around the Charles River for a bit before walking back up Commonwealth Avenue to the BU Indoor Track and Tennis Center. This year Team Kaliope was a little smaller, as I mentioned in my  that my sister had a baby so she and her family were not able to walk with us this year. I am now looking forward to next year's walk more than ever knowing my adorable little niece will be with us!

In May I had another JC virus test since I am on Tysabri, a monthly infusion, for my MS. I am thrilled that it came back negative! It is such a relief because Tysabri has been working so well for me, and if the test came back positive I am not sure I would continue on it. In comparison to other MSers, I know I have it pretty good. I thank Tysabri for that. July10, 2008 was my first Tysabri infusion, and am thankful I have been on this medication for almost 6 years! Next month will also be my 8th MS anniversary.

Regardless what is going on with MS, I just take one look at Melanie and all my problems just fall away! She has become one of the most important people in my life and my MS will not stop me from being the auntie she can count on!