The Internet was down so I wrote in word everyday and saved till now
November 15th, 2007
This morning I awoke to no internet (for the 2nd day in a row). No big deal but how many episodes of CSI, can one watch!!!!!!!!
My sister and few of my friends went to the Project Main St. Gala for ALS, last night in the city. They said and I quote, “it was amazing” and “it moved me”. I know they (project main st.) worked hard for a long time and I was both moved and honored that they asked me to be a part of it. From the feedback, it was a ton of fun and there were a lot of grand selections from the silent auctions.
A little bit about Project Main St.:
A family friend and an introduction led me to Project Main St. They are huge advocates in the fight to spread awareness and knowledge about ALS. Tim, there founder, had ALS and fought to see his vision come off the paper into mainstream America-where ALS is NOT widely known. And he succeeded! Very few of you can say, you knew someone or even thought of what ALS is (Lou Gehrig’s disease-I know we all knew who he was) before I had it or Project Main St. was born. And believe me; I would do anything NOT to have you think of ALS and me in the same sentence. But like I always say, “it is what it is”. I’m not angry anymore-that’s wasted energy. I have unfinished business with some people-in a great way-and you know who you are. So, NO, I am not going anywhere anytime soon!! Ha-ha.
www.projectmainst.org –check the website out
Here is a letter my sister and John M. read at the Gala:
I hope you’re enjoying yourselves tonight!
I wanted to say a few words of thanks. As you may or may not know I am in china for a second round of stem cell treatments. It’s going well. But I wish I were there tonight to personally thank everyone.
I first want to thank Tim (the founder-He had ALS and a vision to spread the word and create awareness through Project Main St.-Tim left this world in April 2007 gracefully: knowing that his vision would be seen and heard) for having a vision and seeing it through-although I never met Tim, through my discussions w/ Mike, I got the pleasure of learning a little about his courage and the dedication he had to see Project Main St. as a real and inspiring charity for ALS. Tim-I am fighting the good fight in your honor.
To my family and friends for walking with me on this journey. Without them I could not have gotten this far and stayed so positive. There were times when it was much easier to give up then walk further. For that I’m forever in your debt. To the Cantore family for putting me in touch with Mike Rosen. That introduction led me here to Project Main St. And lastly, I want to thank Mike and the whole Project Main St. team. You all worked so hard for a long time to make this night special and I’m honored that you chose me to be your guest of honor.
ALS is not widely known in this world but by having charities like Project Main St. and other’s, the word is going to get out. This is a devastating disease that needs your help! Awareness is paramount and then with that, comes, the funding for research. Funding that research is the only obstacle in the path of a cure. Not enough attention is focused on Motor Neuron Disease’s. This event is a stepping stone to that awareness which will eventually lead to a cure. To that I’m thankful.-and remember- The man who removes a mountain begins by carrying away small stones.
Many Thanks Again,
November 16, 2007
Hope you’re well.
It snowed here in Shenyang-just about one inch and more is coming! It’s been like in the thirties and windy.
Shannon and Brandon from Wilton, CT left this morning. Hopefully we’ll see Shannon and the fam when we get home. Brandon lives in Utah. Email!
Gabriel from NY woke up with a fever so my mom cooked him some pasta! He’s alone so mom looks after him. He’s married w/2 kids. Newbies Mike and Donna are from Toronto-huge hockey fans!! Mike has ALS. His diagnosis- October 2006-a month after me. It started in his legs and then went to his hands. He speaks perfectly. He has no use of his hands and is in a wheelchair. So I have been asking this question a lot since I’ve met him. Would I rather talk than walk? I HAVEN’T A CLUE. So, I pose the question to you, would you rather walk then talk??
November 17th, 2007
We awoke to the internet being down once again. So I am writing this in word and saving till the internet is on and I can upload to my blog.
Well, yesterday in the morning I had acupuncture and then the bone marrow from the transplant was put back in me. See, when you get an injection in your spinal cord, they have to take as much out as they are going to putting in to equalize the pressure in the spinal cord. Well, let’s just say when he put the marrow back in, I have never felt the pressure like I did. The soreness after I’ve never experienced. I was in bed till 8pm. I’m so sore today but I have a Chinese massage (guys-it’s not that kind).
1pm Same day:
“How long before I get in-before it starts, before I begin-how long before you decide, before I know what it feels like-where too, where do I go-if you never try then you’ll never know-how long do I have to climb-up on this side of this mountain of mine”.
I’m bored before my occupational therapy at 1:30pm-its 12:30am your time. My mom is out with the ladies and I’m here listening to Tori Amos’s taxi ride on my ipod! In a million years I never thought that or this. Now its cold play and clocks is the song. Diana from Trinidad needs a hip replacement. That’s what I used to sell-hip and knee replacement implants. So I’m in the process of having her get in touch with one of old doctors that I sold to and I’m friends with. She wants to have it done here so I’m going to the skinny on what company’s implants they use here. I know my old company has products in china-I just don’t know where. Glad to be of service.
Off to OT.
2:30pm Same day
Now it’s Crosby, Stills and Nash-Southern Cross. It’s one of my top 5 songs of all time.
I’m feeling improvements in my hands and legs. They work me to a good sweat! And with my hands they do all these coordination exercises like: picking things up w/ 2 fingers and walking my fingers up a miniature stairs. I get three solid hours a day of therapy.
I got the two seasons of the show Prison Break-I’m addicted. It’s so far fetched but Michael Scolefield is so smooth. Now it’s Gerry Rafferty-Baker Street-good tune. As you can tell I’m highly bored. Off to the Chinese massage……
hve to upload pics tomorrow!