Fishbone “Alcoholic”

Silly and fun.

Takes me back to being 14.

http://alovesj.wordpress.com/2010/06/29/amazing-article-the-battle-for-treatment-will-be-won/

Tears of Joy
NYTimes: From M. S. Patients, Outcry for Unproved Treatment
http://www.nytimes.com/2010/06/29/health/29vein.html

Literally tearing up over this. Finally we have good coverage on this new treatment for multiple sclerosis. Some of you know that we fought a battle for Jason to have this treatment, and finally found a doctor willing to help us a month ago. Jason has severely narrowed veins in his neck which has been linked to MS. The procedure treated several of the narrowings. The results for Jason have been wonderful and *very real*. With this article now the pressure is on for hospitals everywhere to approve the procedure, and allow patients the choice to have this treatment. So much to say on this. The journey we’ve been on, and how odd to find ourselves in the middle of such a controversy. It has been very emotional. We knocked on so many doors, jumped through so many hoops, and pushed so hard until we found an amazing doctor. I’ll tell the story sometime. Stay tuned… We will post a video of Jason pre and post procedure showing subtle change.

-Alice

Over at the next few blog posts, I’ll give you the chronology of how I’ve gotten to this point. Alice has been the major support system for me to be able to get here. All her work over the past six months has lead to here.

It’s true when they say ‘You never know what’s coming for you!’

Here’s a treat…check out Alice’s ongoing Florida wedding blog: http://alovesj.wordpress.com/

10 Weeks Across the Country Telling Your Stories
To celebrate the amazing individuals who have shared their lives with MS over the past ten weeks, the We Keep Moving travel team of Jason, Kate and Amelia reflect on each story and also share their individual experience and perspective in this final video. This unique project has brought people together, highlighted challenges and triumphs, and increased MS awareness around the world through authentic individual stories. Thank you for making We Keep Moving a part of your life, and continue to tell and share your stories of living with MS and moving forward.

Pennsylvania is a beautiful, lush state with rolling hills and large forests far from the concrete escapades of New York City. This week, we met Ashley, a sophomore in college, who was diagnosed at the age of 15. High school is hard enough as it is – without a diagnosis of MS. She’s a very brave young woman, who has definitely turned lemons into lemonade.

We Keep Moving is coming to a close; this will be the final blog. And what an adventure it has been! We traveled across the country over and again, to places that we wouldn’t otherwise have found ourselves. It was not without its difficulties: the airport at 4:30 a.m. was exhausting, a different hotel room every night was confusing. Imagine waking up each Monday morning not exactly sure where you are. Imagine leaving your apartment building and traveling a vast network of airports. Intense to the point where one could lose their identity! It is a strange psychology, knowing that for every week from Sunday to Tuesday, you’ll be in someplace totally different. This tour was unique because we didn’t choose our destinations. You chose where we went week by week. We were your messengers! The stories that you chose were the ones that we told!

There have been several difficult times for me in particular, traveling with a scooter. I’ve seen how our society functions (or doesn’t function) when it comes to accessibility. I’ve seen how people look out for one another – we have a universal trust to overcome individual physical disability. I’ve also seen how using a scooter is possible when you have people to help. I no longer fear flying with an assistive device and I hope that by watching our stories and my traveling that those of you who use such devices don’t find them a deterrent to travel. Keep moving!

Some highlights: in Church Hill, Tennessee, (week one winner) Jason’s spirit surpassed MS and his family was of the utmost importance. In week three, we met Linda, in Westchester, Pennsylvania, who honestly shared the difficulties of MS alongside the triumphs. Not to forget Joe and Karen from Winter Park, Florida, whose love for each other holds no bounds even in the face of MS. What about Kathleen from Littleton, Colorado, whose strides are only surpassed by her spirit to keep moving.

One major thread that we saw a throughout the stories is strong support systems for those of us living with multiple sclerosis. As with Amy from Muskego, Wisconsin, or Jennifer from Rochester, New York, family support is important for the day-to-day trials of MS. Of course, the definition of family is broad – even with Buddy and her dog Ellie, a support system is a theme we’ve taken from each and every story.

As Dale from South Euclid, Ohio, showed us, we’re really close to finding a way out of our MS challenges. As an MS researcher, he’s helping pave the way so that this conversation may one day be over. Until that day happens, we have the National MS Society, who’s helping us in multiple ways and, in this case, allowing us to hear stories of others like us.

Thank you to all of you who voted throughout our journey, and a special thank you to all of those who allowed us to invade your lives and tell your stories. You’ve provided inspiration and advice for us all to draw upon as We Keep Moving on our journey together.

As you know, I’ve been to a lot of airports in North America, especially lately. This continuous air travel is helping me to realize something: I tend to learn things in the extreme situations, like getting hit by a car to find out you need to look both ways before crossing the street. Ten weeks of airport traveling as a disabled person has taught me a great lesson. And unfortunately, I just missed the flight I was supposed to be on. Let me tell you how it all happened.

My alarm buzzes repeatedly at 5:30 AM. I hit snooze a couple of times and then roll over begrudgingly to wake up. It is a clear morning in Santa Fe, New Mexico. My flight is departing early morning. Sherri drives me to the airport at 6:30 AM. It’s going to be a beautiful Santa Fe day, we agree – too bad we can’t stick around and enjoy it! We arrive to the airport in more than enough time, but the airplane to Dallas is arriving late. Because of this, Kate, Brett and I will have only 55 minutes to catch our next flight in Dallas. The plane lands. “Please let all passengers with a connection leave the airplane first.” Brett, Kate and all connecting passengers rush out. Of course, I should rush, but I sit tight. I can’t get up and walk very far, so I wait. The flight attendant tells me she called ahead to let them know I had a connection. Well, that’s good. But she also informs me that that doesn’t make a difference – sometimes. All the passengers get off the plane and I sit there waiting to be taken off – for approximately 15 minutes. The wheelchair crew comes in to get me with their handy-dandy aisle chair. After the massive delay, it adds insult to injury to have to get into one of these to be escorted off the plane.

I get outside and as it happens my scooter is still down in the plane. I tell them that I have a flight to catch. “This is the first we’ve heard of that,” one of them says. Wonderful. Even though the flight attendant called ahead to say: we have a need for a wheelchair for a disabled passenger and he has a short connection time. I get into a wheelchair and go out to the front of the gate. Ten minutes later they bring my scooter and I’m on my way. Unfortunately, my connection is in C-37 and I’ve arrived to the B terminal. I feel sorry for the wheelchair attendant who pushes my walker as I speed toward the shuttle to the C gates. We bolt down and arrive to C-37 and guess what? The plane left just minutes before. The gate attendant tells me to go to Gate C-30 to wait and catch the next flight to LaGuardia Airport. Awesome.

So I sit writing this blog at noisy, crowded Gate C-30. As I’m writing, I’m listening to the music of a new friend I’ve made, Preston Craig. He’s an Atlanta-native who descended upon New York late last year. He’s got muscular dystrophy, and is an amazing DJ. Check out his work on his blog.

Now, I understand the variables of air travel and that airports are trying to wrestle with human error and the inconsistencies in finding order. I also know that if I was taken care of in a manner that would allow me the same chance as someone able-bodied, I would have made that flight. On my way to the C terminal, I called Kate. They boarded in time and were on the plane headed to New York.

Really, this is not about missing a flight. I see this over and over in different places and different circumstances. Is it the basic concept of survival of the fittest or the human instinct of every man for himself? I want to believe that, as a society, we’ve come a farther in our philosophies towards life than this. Here’s the lesson: every time that I see there is no ramp or elevator in a building, every time that there’s no accessible accommodation in a hotel, and every time I can’t get onto the curb, I’m reminded that we have a long way to go. More so than this, I am reminded of the extra steps that people with accessibility issues have to take to be accounted for and heard, and to do something as simple as take a trip. More so than this, I am reminded of how much human potential has not in actualized because of these basic things that society doesn’t hold as a priority.

Sorry to get deep on you. It might be now that I see cities from high up, I get to see the houses, the cars on the streets, and I have a broader perspective. Though I vent, I’m certainly having a good time, with Preston Craig in my ears, remembering the amazing day we had with Buddy in Santa Fe. She taught me something about making my voice heard. It’s with her spirit in mind that I wrote this blog.

This week took us the furthest west that we’ve ever gone! Thank you voters, you’ve answered Amelia’s prayers!

We fly into the Denver airport and I meet Becca, who’s already been in Denver for meetings over the week. It’s a cold and dreary night, almost reminiscent of the wind we just fought through. As Becca and I drove into Denver proper from the airport it was almost looking like sleet – and could have turned into snow. No, please no.

The next morning, we all met and were on our way to Littleton, Colorado. The day brought separating clouds and eventual sunshine, which I’ve been told is the Denver norm. We pulled up to Kathleen’s house and lo and behold, two steps to get inside, with no handrails. I slowly made my way from the street up the path to the godforsaken steps. Now, keep in mind that I’m not just doing this for a joyride. It’s very necessary for me to be involved with the crew to hear the initial interview with Kathleen, so I get a better idea of her and her story. That helps shape the blog that I’m writing to you!

Two steps can sometimes feel like a mile high. A mile high in the Mile High City! Denver, please don’t kill me for that pun. Being in the theater has taught me the importance of accessibility. I’ve almost become obsessed with it. How could you not? Any place that you want to go is a challenge unless you know about whether or not it is accessible before you get there. A few months ago I did this small video with my friend Suri in New York City where we vented our frustrations about accessibility. View on YouTube. Really, I’ve been trying my efforts towards finding a solution, rather than just complain. More to come on that in a little while!

Kathleen is truly an inspiration – showing us that anything is possible when you create your own sense of access! As I continue on the MS journey, I realize the importance of access. It makes what was once said to be impossible – now very possible.

Denver hosts one of the home offices of the National MS Society! After the shoot, we went to dinner with Joyce, the CEO of the Society, and the crew that’s been helping us from place to place and posting our stories on the Web seamlessly. It was a great way to end our Denver experience.

-taken from wekeepmoving.wordpress.com, written by Jason DaSilva

This week, the New York-based WKM moving team boarded a 6:30 AM flight to Milwaukee. To put into perspective, this means that I had to leave for the airport at 4:30 AM. This meant that I had to wake up at 4 AM. Please know that this is the backdrop from which this blog is written, and be reminded that MS is not exactly tolerant when it comes to sleep deprivation. I’m just asking for your empathy, please and thank you.

We got to the Milwaukee airport, met our West Coast colleagues, and took off to meet Amy. Hold a second – let me just give some props to Amelia. So far every place that we have visited has either been on the East Coast or in the Midwest. She’s in San Francisco, which means that she has to travel far every time that the destination is chosen. Please voters: don’t do this to Amelia again. I can tell she’s getting tired from the amount of air miles that she’s accrued. Get out there and tell all your friends to vote for someone on the West Coast at least once. Sorry, I digress. Save Amelia 2010.

Back to the Milwaukee airport. Well, by this time were actually in rented cars speeding towards a shopping mall. A shopping mall? What does this have to do with multiple sclerosis? We’re headed to meet Amy. She founded an animal rescue agency which seems like the funnest job ever. We were surrounded by cats. I could’ve been there all day. I didn’t grow up with a cat or a dog, so this was such leisure! This is what heaven must be like!

WKM Cats

Amy’s story reiterated the importance of family and support which really hit home for me. I’m realizing that living in New York has been a challenge without family around me. My father lives in Hawaii, my mother and my brothers live in Vancouver. Both parents are on the other side of the continent. In New York, your friends become your family. But at the same time in your 20s and 30s, nobody really has time to be your family when they’re racing around New York on the grind. Only in the past six months have I really felt like I have somebody looking out for me in New York. My girlfriend Alice is really the support system that I never had. It can be as simple as somebody to ask you how your day was, somebody to help you with your shoes on in the morning, or somebody to give you a call just to check up on you. These are the things that someone close does. I’m realizing how isolated I had become, and how nice it is to have Alice’s support. To those who don’t have someone: I know that feeling and it can be rough. But I do have this to say: Keep on, living and surviving, you’re providing inspiration to others around you, whether you know it or not! Don’t be afraid to ask for a little bit of help or support. I want to be as independent as possible, but sometimes this is to my own demise.

As the sun set, Amy’s family Bike MS team socialized in her driveway, and the We Keep Moving team left the cats that reminded us what love and support really is.

Eva Dien Brine Markvoort … what a life! She lived passionately, with purpose, and died on Saturday, March 27. She left a legacy of love and made a difference in the lives of thousands of people both in her personal life and in her online community. Eva’s life, almost 26 years long, was defined by her challenges related to cystic fibrosis. She knew how to live for the moment and her magnetic personality drew people in at every turn. Eva took nothing for granted and she had no time for complainers. Her life was full of vibrant moments and she appreciated all the beautiful aspects of her surroundings, constantly adjusting to the limitations presented by her health. Eva filled every room she entered, she engaged herself in the present and she learned to turn the most challenging situations into positive experiences. She was a force! Eva has enriched the lives of her parents, Janet Brine and Bill Markvoort, her siblings Annie and Hunter, her loving extended family of aunts, uncles and cousins, and her dearest core ‘team’. Eva’s family expresses their gratitude for the tremendous support provided by friends, family, neighbours, colleagues, the medical team, and Eva’s online community.

In lieu of flowers, donations in Eva’s memory to the Vancouver Cystic Fibrosis Foundation will be gratefully accepted at www.cfvancouver.ca . All who read this are also encouraged to register as an organ donor at www.transplant.bc.ca . For her online community, Eva’s Celebration of Love will be streamed online on April 30 beginning at 4:00 p.m. Pacific Standard Time.

http://65redroses.livejournal.com/