01. January 2065 - 0:00
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Help Michael Save His Fingers - Donate! | Thursday, 01. January 2065

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THE DISEASE
Michael has a disease called Dupuytren's Contracture, which is an overgrowth of collagen in the hands that causes them to become debilitated. Without our help Michael may well lose the use of all his fingers.

THE TREATMENT
Michael has already permanently lost the use of both his pinkies and ring fingers, but there is an enzyme injection treatment called Xiaflex available for his other fingers and his thumbs.

THE EXPENSE
Xiaflex costs over $3,000 per finger. What little insurance Michael has does not cover this procedure. Current estimates of the total uninsured costs indicate we can send Michael to his November 16th doctor appointment reasonably funded if we raise $25,000.

Michael is a young guy and it would be tragic for his hands to be debilitated at his age if there is the possibility of preventing it. So let's step up and do this!

ABOUT MICHAEL
For those of you who don't know Michael, he is a wonderful guy. Those of us who know him from our time at St. John's College know he is a force of intellectual verve, a trusted friend, and as the years have gone by, Michael has continued to be a bright presence in so many of our lives. Very few of us knew about his situation until now. But now that we know, we are working tirelessly to see that he gets the treatment he so badly needs.

So, whether you know Michael or not, please know you will be donating to a wonderful person who has brought joy and great friendship to many, many people.

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We will keep you updated with how Michael is doing and what new information his doctor appointment makes available. Thank you so much for your time and consideration.

And invite your friends, please!

BTW, the date of this "event" is set to 6/21/13 simply because there has to be a date for an event, but that date means nothing, so don't wait to donate!

Again, you can go to to read more and to donate. Thank you!!

PS: If you prefer to use Paypal, you can send a payment to through that website.
Comments
  • Can I donate fingers I will hear is my number 4804531836
  • Dupuytren's or Viking's or flexior (contraction): suppose I know the remedy and forget my deleted post. The cause is variable of course. "Sadhu Ashram" on fb has my first post. Method vs surgery because method is surgery without the scalpel.
  • The following, by Seth Godin, is what Dupuytren's means to me. Bounce forward When we hit an obstacle, sometimes the best we can hope for is to bounce back. To recover, to get through this and get back to normal. But when our project hits a snag, perhaps we can consider using the moment to bounce forward instead. Being on the alert for opportunities, not merely repairs. If we're spending our time and effort focusing on a return to normal, sometimes we miss the opportunity that's right in front of us. Bouncing forward means an even better path, not merely the one we were on in the first place.
  • Have you tried Kickstarter?
  • Dad, who also has Dupuytren's Contracture, had his pinky amputated today. If I ever need to have that done, I'd like to have the bones posed in a glass case a la 'Enter the Dragon'.
  • I've scheduled a second opinion for my hands. I want to find one more doctor to consult. Since surgery is such a serious move for me, I want to create a situation where the opinions, if very different, will be weighted in one opinion or another. Having one doc say A and another say B is really not any more helpful than just flipping a coin. Now to find a third doctor who is well versed in all forms of treatment.
  • Update: My doctor wants to move toward surgery. She does not see NA (where they perforate the cord and pull the finger straight) as a viable option for me. That being the case, she is not certain that these same fingers that we've been working on are eligible for more Xiaflex at this point. Her reasons for no NA or Xiaflex are the condition of my knuckles and the cords are not pronounced enough. If we could affect the cords, then either of those options might be worth a try. If the knuckles were in better shape, then it might be worth a go. But since neither are working in my favor, she wants to aim for surgery. (And she's conservative when it comes to surgery.) I decided to put everything on hold for just the moment and get a second or third opinion. She may be right. She probably is right. But I need to get my head in that space if her way is indeed the direction to go. Cross you fingers (since I can't!) for me that I'll find a good doctor who is certain that there are other less invasive steps to be taken before we cut.
  • It was one year ago today that Kevin Grizzard set up the fundraiser where hundreds of you jumped in (and are still jumping in!) to help. I am still amazed at everything that has happened in one year. As well as thanking Kevin, I want to also thank Katherine Beal Frazier, Annie Frazier Crandell, and everyone else who has been a part of this. There are too many of you to name individually, but you know who you are. One of the greatest lessons that I've gotten from this is that it can be a valuable thing to get your **** kicked now and then as long as you use it to grow. I have grown from this and am still growing. Thank you all!
  • I posted this in the Group, but for those who still prefer to follow here, I am reposting this for you. I have had a number of people ask me, so I'll post here. Yes, the fundraiser is still ongoing. I want to clarify that, though, while the need still exists, it is less immediate than it had been one year ago. (Can you believe the end of this month marks a full year for this adventure?! I can't!) The disease is a lifelong condition, unfortunately, so there will always be need for treatments and surgeries. I hope this clarifies things for anyone who wondered. If you have any questions, please feel free to ask. Also, don't hesitate to send me any questions you have about my current condition and how this year has affected my hands. Because I'd LOVE to hear from you! PayPal donations can be made by sending a payment to help.michael.s@gmail.com with no deductions taken from PayPal, or the more popular gift site is http://www.gofundme.com/1fhtmc. Thanks for this amazing year and for all of your help. P.S.- (In the Group page) Don't forget to check out the Photos tab to see my progress, and the About and Files tabs has a lot of info about Dupuytren's Contracture if you're still unclear what it is-- or just ask me!
  • Update: Manipulation went well. It took two (normally they don't get through a whole one) syringes of anesthetic to numb my hand enough to get started. As the doctor walked out of the room after numbing my hand for the third time, she said that this should do it, at least it would for "most people". Apparently the needle just touching my skin was causing me intense pain. No idea why, but apparently my hands feel pain more intensely than the rest of my body (and the rest of the world population!). An injection in the nerve in my wrist helped a lot and was much more bearable. Plus I got to have a stigmata for a while, and who has ever not wanted a stigmata? (Well, maybe Jesus didn't care for it too much.) An hour later I laid on the table and she did the manipulation. This time went much faster than the first two manipulations, but I was told that I was a lot louder, as well, this time around. I don't doubt it. My hand seems much better, but I'll know more in a day or two when I'm less afraid to move it around more. I've not reviewed the vid, but I plan on giving you a short movie (and pics) soon--on the group page if not here, too. Get excited!
  • Get ready for another exciting video in the Michael's Xiaflex story! 8:00am tomorrow for my manipulation. Are you excited?!
  • Got the notification of Michael's update on his treatment today and out of curiosity went over to the GoFundMe page to see how the fundraising was going. Last donation was 3 months ago, so I made another donation. Just thought I'd put that out there...maybe people who donated before could give a little more now. He's just over $14K of the $25K goal. Get your good deed in for the day... :)
  • Update: Got the injection. Hurt like a *bleep*. Hand is swollen and I'm babying it now. Hard to type, etc., so today will be a challenge to be productive--but I'm up for the challenge! I just wish I had sorted out plans for food prep before now. Ha!
  • Xiaflex injection in less than 7 hours!
  • Next Xiaflex treatment: July 17th with the manipulation two days later on the 19th. We will be starting my right hand this time. It'll be quite a challenge to put splints on both hands. So nervous and excited!
  • I've posted a video of my manipulation that occurred today on the group page. I'd have also posted it here, but it was so hard to get it to upload there.... Some of it might be a bit intense for some people, but it's the real deal. Enjoy!
  • Are you ready for this excitement? I am! Manipulation in T-38 minutes and counting....
  • Update: I got the Xiaflex injection today. The actual injection felt about the same as last time (the short injection story--not the finger extension story); in other words, as you might expect, three pretty major needle ****** but nothing too bad. On the way home, however, I went to point at something and as I tried to open my hand I felt a very sharp pain and it still hasn't gone away. My fingers are tight and there is some bruising already. The first time I had almost no bruising and no pain like this, so it's all a bit of a surprise for me. This seems more like what my doctor described it to be like -- I hope. A plastic surgeon also visited today to try to learn about Xiaflex. (My doctor tends to bring people in to view me since, as she likes to point out, as a patient I'm well versed in the disease and am good at giving info to the pros who happen to be less knowledgeable on the subject. I figure that one day they could be treating me so I ought to help them obtain the knowledge I want them to have!) I learned from him why I have not been able to find certain things online about my DC: I have a very atypical case, and they don't know why. Apparently DC should only make it difficult to fully open the fingers and lay the hand flat. In my case, I also cannot close my hand completely or ball my hand into a fist. My fingers also have some clubbing, and none of the doctors who have seen me have been able to figure out the cause. While, as I said, the reasons for this are (yet) unknown, this explains why, as Katherine says, for most people this disease seems to be more of a minor inconvenience, while for me it is something more. As for the extension on Friday: my doctor expects this experience to be significantly less painful than the first one. In short, she says that in addition to my case being the worst she's come across, she was also (inadvertently?) doing a -- well, I forget the word -- but it's where the knuckles, which have been frozen in place for a long time, are manually yanked loose. What this means for you guys is that I may not have quite the adventurous tale to tell afterward. But, cross your fingers in the hope that I do! Finally, I had recently mentioned that I was to be interviewed yesterday. That got rescheduled--possibly for tomorrow. Don't worry, I'll keep you in the loop.
  • Tomorrow the photojournalist is scheduled to come over for an interview. Then Wednesday morning I receive the Xiaflex injection, and Thursday my fingers get extended. Busy week!
  • It's official-- I get a second Xiaflex treatment on April 10th, and the (hopefully story-worthy) extension April 12th. Thank you all for making this happen!
  • I have yet to receive a call from my doctor's office, but my schedule printout from the hospital shows that I have two appointments with her two days apart, which matches the pattern of my first Xiaflex treatment. I asked my occupational therapist if she had seen this and she said that my doctor had recently asked her if she'd be available for a Xiaflex treatment but didn't say for whom. Granted I have no official confirmation (so cross your fingers for me that I am not misreading the stars here), it looks like my second Xiaflex treatment will be Wednesday, April 10th and the extension will be Friday, April 12th. So, yeah, that's something noteworthy.
  • Pretty interesting stuff here. DC is quite prevalent in some areas.
  • Now that I have had some therapy on my fingers, tonight we get the 'After' pictures of my hand(s) taken. Cross you fingers that Paul Miller will be able to find some cool ways to show the progress that all of you folks have helped to make happen!
  • Great news: I saw my ortho today as it's been one month since my Xiaflex treatment. My progress with the occupational therapist has gone really well so we are scheduling a second Xiaflex treatment! So, yeah, that's pretty good news. Thanks, everyone!