Thursday, May 26, 2016

Haiku Thursday?

That sound a truck makes

In low gear going downhill

Me nearing the clock

Wednesday, May 25, 2016

Focus

The little update on the results of the Brooklyn half Marathon.  Of the 27,410 people who finished the Brooklyn half I finished 27,403rd. I personally knew three of the people who technically finish behind me. My average pace was 21 minutes and 40 seconds per mile, which is still two minutes per mile faster than I ran a whole mile a month ago. Below are some of my favorite photos that I found on Facebook. 

This was just after the 13 mile mark. Just after I turned onto the boardwalk and was joined by so many of my teammates. They said I was like Rocky going for a run and being followed by all the kids in Philadelphia. But I wasn't focused on what was behind me, I was busy changing gears from running to walking.




Just after I crossed the finish line being greeted by Peter Chaccia of the New York City Road Runners Club. He has been the guy who make sure everything goes right on race day. That was kinda my old job.







Getting my medal. Just like the 27,402 people before me and the seven people after me.









And then the photo ops quickly began. Peter grabbed me and brought over Michael Capiraso, the CEO of the roadrunners club. I don't have the pictures but someone walked over to me and had me pose with them who I'm told was a state assemblyman and then the community board leader wanted to have a picture with me.

And on the entire course I was continually being filmed by my friend Josh. I'm not sure if he's making a documentary about me for some sort of short story with me as the star.

I didn't shed a tear. Although I thought I would. Now when I saw the finish or even when I got that medal. I was ready to, but I was to focus on not falling down. I almost choked up a little this morning when I met a bunch of my GBS friends and they congratulated me. Some of them saw my Facebook status the morning of the race. 

 For everyone who helped me up.
For everyone who could not get up.


Above this line was written the day after the race
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Below this line was written the day before the race

On this date two years ago, I couldn't tell you what hospital I was in without checking my records.

On this date one year ago, people applauded me because I could stand up and rotate myself 360° without holding onto anything.

Last week, I could not hold back my emotions when I told a room full of GBS survivors that I would be participating in the Brooklyn Half Marathon

It's been hard to focus lately. And when I say lately, I mean for the past two years. Guillain-Barré syndrome... Chronic inflammatory demyelinating polyneuropathy.. Acute motor axonal neuropathy... They are all conditions that affect the motor nerves. But who's to say what's going on in my brain. Maybe this peripheral neuropathy has nothing to do with my cognitive function. Or maybe I'm still recovering from all the shit that happened to me in the past two years. Maybe I have PTSD, but I don't have the time to find out. Sometimes, I find it hard to maintain a sustained thought. Sometimes and having a conversation and I forget what word I'm about to say. I told this to my neurologist and she suggested actual sleeping pills. Yeah maybe I'm a little better, but I'm still a little bit out of whack upstairs.

Whatever, the day after tomorrow on the be running completing the Brooklyn half Marathon. I'm will walk I half a mile to the starting line and then I'm gonna walk around the Brooklyn Museum / Botanic Garden then around Prospect Park and then all the way to Coney Island. 13.1 miles. It will happen. My training hasn't been much. Last week I covered 10 miles into chunks on Thursday. And a week before I completed a 6.2 mile race. I'm pretty confident I'll get to that finish line. I'm not thinking about the start, I'm not even thinking about the finish line. I'm focusing on that park bench that's going to be 10 or 20 feet from the finish line. All I keep thinking about is crossing that finish line and getting to that bench and crying like a baby.... Yeah, I'm focusing on that moment where I could let it all out.

I think a man enough to admit that since May 7, 2014 I have been no more than three deep breaths from completely losing it. And by losing it I mean having an out of body temper tantrum or crying fit that I'm afraid would never end. That's where my focus has been going. It's taken a great deal of mental energy to just keep my head on straight. Okay, just saying that made me feel little better.

If you want to keep track of me you can use this app you don't even have to know my bib number just type in my name. Michael Ring, or you can go on Facebook and follow my two friends arre going to chaperone me for the whole race, Nicoletta Nerangis and Josh Pesin.

By the way, this is at least the 13th time I'll be running the Brooklyn half Marathon. I say at least because I'm sure I was a bandit more than once. In 2013 I actually managed one of the water stations. I was supposed to do it again in 2014 but I vaguely remember answering the phone and saying "I am in intensive care you have to find someone else to do this." You can also read about me in last Sunday's daily news.

So it looks like it's going to rain on Saturday. Fine! Let it Reign O'er Me!



I don't sing out loud very much. But on those rare occasions where you can be alone in a park in New York City, when it's pouring raining, I would look up at the sky and sing the chorus.

Tuesday, May 24, 2016

How to make a living finding MetroCards (Updated 5-24-16)

Update, May 24, 2016

It's been a long time but I'm finally updating this.


It's kind of ironic but the MTA gave me a Metro card with my picture on it. I don't have to put money on it and it just comes loaded with eight swipes a day. I guess they'd rather have me on public mass transit then send an Ack-Stress o Ride to go get me. This past Saturday when I was approaching the starting line to the Brooklyn half Marathon there was a Metro car on the ground. I can bend down but it's hard to pick things up off the floor, so I compels my friend Josh to pick it up. He didn't need it so I wound up running the whole race with it in my pocket. I just checked it, and it's going to work till May 31. 



It has been a week since the fare went up and the MTA is collecting an extra buck if you don't refill you existing MetroCard.  The is not less litter.  In fact, I have seen many people pay the extra $1 for a new card when the top of the MVM is strewn with cards.  I also assume that I will start finding many $1.95 cards instead of $1.70 cards. People are just going to put $10 in the machine and get a $9.45 card.  After they ride 3 times for $7.50 they will toss the card with $1.95 on it.  (3-8-13)



The card to the above was found sitting
 on top of the scanner box.  It had $7.25 on it
.
So next week the MTA will start charging $1 if you need a new card.  I really don't think I will find any less.  People leave $45 cards on top of the MVMs because they are careless, not because they don't care about the money.  So instead of finding a lot of  $1.70 card I will find a lot of  50 cent cards.  (3-1-13)

The other day I watched a guy freak out as he was trying to swipe his way onto the subway.  He kept swiping cards and  could not get in.  He slammed a pile of cards on top of a payphone and stored over the the machine and bought a Single Ride.  After he went through the turnstile I check the value on those cards.  They added up to over $20, mostly $1.70 cards and a few larger cards that had recently expired.  People just don't know that they can go over to the booth and get them combined. (12-25-11)

Now the bonus is 7%.   $10 gets you $10.70 and the fare is $2.25.  But, 4 trips is $9.  With $1.70 left our the card there is no extra ride when someone buys a $10.00 card.  Since 2011 started I have been finding cards with $1.70 on them for every one that used to have a nickel on it.


In the sidebar of this Blog I list the sum of the value of the MetroCards that I find. If I find 5 or 10 cents in a given day I don't post it, I wait till it adds up to something worth typing.

I would like to point out that I believe that every MetroCard that I find was lost by somebody. They were not put there for me to find. On more than one occasion I found some valuable cards (Transit Check Gold) and moments after I scanned it at the reader I saw a desperate individual looking at the ground in a subway station. Asking that person if they lost their MetroCard and returning it to them was more satisfying that riding for free for the rest of the month.

I think the design of the MetroCard lends itself to getting drooped. It is the thinnest thing in your picket. If you keep it with your cash or keys it can slide out without being noticed. I would urge everyone who uses a MetroCard to use a MetroCard holder of some sort.

That said; finding value on MetroCards is like winning at gambling without the risk of loosing your own money.

If you are interested in doing this either for sport, competition or to save money or to supplement your income; here is some advice.
  • The further you are from the subway the more likely the card has value on it. The highest value cards that I have found have been in on the Brooklyn Bridge, on the courses of races, in the middle of intersections, in supermarkets, parks, etc. These were not drooped by careless litter bugs. Nobody would walk to the middle of the Brooklyn Bridge just to flick their MetroCard onto the sidewalk. It was dropped by somebody pulling their camera out of their pocket. So if you see a MetroCard in a place having nothing to do with the MTA, pick it up.
  • The cards just inside the turn-style are not worth picking up. I have seen countless slobs swipe their MetroCard with one fair left on it and drop it like they drop everything they have no more use for.In a subway station don't just look at the MetroCard Reader. Look on top of the MetroCard Vending machines. Look in the cracks in the vending machine. Look on the little shelf on the front of the "token booth". Especially the stations that do not have anybody working in them; the burgundy stations
  • Most of the cards I find in the subways station have 5 cents on them but many have $1.50 or some other amount under the subway fare. But like the lottery slogan, "Ya never know" sometimes there is $20 or more just sitting there waiting to be pickup. The upcoming increase in fare will obviously improve the quantity of cards with left over fare on them.
  • Many of the cards I find with more then $10 or $20 on them are "expired" I don't think many people know that you can exchange them for a new one
  • Follow the instructions on the card reader. If it says "Please Swipe Again", do it, just 2 or 3 times, then put it in the trash. If it says "See Agent" do that, but first try it again another day. That card probably has some value on it.
  • When it comes to combining MetroCards, don't over burden the "token clerk". It might be their job to combing MetroCards into a usable amount but some evoke unwritten "I can only combine 4 or 5 rule". Some have refused to help me at all because they said they have been on the ground. One clerk even told me her machine did not combine cards. I would not advise arguing with these people. They work in a bulletproof booth and it is an extra felony to "assault" them. They also have a pretty crappy job, there is no point in giving them a hard time.
  • If you look at the rest of my blog, you will see that I am a marathon runner. I run a lot. When I run, I make a point of passing through subway stations (I get some stair training). Also loops around Prospect Park can be a little repetitive. A larger loop can include many subway stations. The F train: Prospect Park and 7th Ave, the Q/B Train Parkside, Prospect Park and 7th Ave and the 2/3 Train Grand Army Plaza and Eastern Pky/Brooklyn Museum.
I once found a Transit Check Gold MetroCard. It worked for 3 and a half months. The original owner did not tell their payroll manager it was lost. But most of the monthly MetroCards I found did not work for as long as they should. The original owner contacted the MTA and reported it lost. They got a prorated refund. I was kinda glad.

Whenever I find a student MetroCard or a Senior/Disabled Card I hand it to the "token clerk". They are issued to specific individuals and it is against the law to use them.


Karma works both ways. If I ever see someone looking for a "swipe" to get them on the train, I always give them one. Also, I befriended a man in my neighborhood of little means (I don't believe he his homeless). We started talking about all the things that can be found. I told him I find lots of MetroCards. He did not even know what they were, he has not ridden mass transit in years he said. Now he picks up MetroCards and keeps them in his picket till he sees me. I do not give him the value on them. I give him 10 times the value on them or $10, whichever is greater.



I asked this question to the MTA:

Customer (******* ****) - 05/06/2009 12:18 PM
I read in the news that a man was sentences to jail time for bending metrocards.

http://cityroom.blogs.nytimes.com/2009/04/30/bent-metrocard-is-forgery-court-rules/

Are there any regulations against


1. Picking up discarded metrocards from the floor of a subway station or on the top of the metrocard testing machine?
2. Asking the booth attendant to combine them into a usable amount?
3. Using them for personal use?
4. Giving them to a friend or family?

This was the response I got:

Response (Melissa Glasgow) - 05/06/2009 03:21 PM
This is in response to your recent e-mail message to MTA New York City Transit regarding MetroCard.

As you may know, you may have uneven balances of several Pay-Per-Ride cards (that you have previously purchased and hold primary ownership of) moved to 1 card at the service booth of any one of our stations. You may only process 5 cards at a time (four old+ the one that the remaining values are being transferred to). This limitation exists to prevent fraudulent activity. You may also send your MetroCards to MetroCard, 2 Broadway, Room B11.59, New York, NY 10004. Due to fraudulent activity at our MVMs, this transaction/feature was removed from our MVMs, several years ago.

However, under the circumstances you have described, the station agent has the discretion to refuse to perform the transaction and summon NYPD Transit assistance, if he/she suspects fraudulent activity at our booths and/or turnstiles.

http://www.mta.info/mta/news/releases/?en=080625-NYCT85
http://www.mta.info/metrocard/termsunltd.htm

Thank you for having taken the time to contact us.

I asked what law I would be violating. The responded by telling me to submit a Freedom of Information Act request:

This is in response to your recent e-mail to MTA New York City Transit requesting information regarding the MetroCard tariff and the laws surrounding it.

Please be advised that the information you seek may be available under the Freedom of Information Law (FOIL). You must submit an electronic FOIL request to the appropriate MTA agency via the FOIL request page on the MTA website. If you send an electronic FOIL request in any other way or to the wrong agency, you will not receive the records you are seeking. You may submit an electronic FOIL request at www.mta.info/foil.htm. Be sure to select the appropriate MTA agency. Otherwise you may contact MUNY directly to investigate the feasibility if your request - http://www.mta.info/mta/aft/muny/

We hope this information is helpful and thank you for having taken the time to contact us.

Melissa Glasgow
Associate Staff Analyst

See more information in SubwayBlogger.com ,Yelp and The New York Post has an article about a women who finds cards. The New York times has a story about Single Ride Cards and refills. AM New York says the MTA is budgiting $48 Million in extra money from lost and unused MetroCards.  The Daily News thinks this is news.

Sunday, May 22, 2016

Anti-theist

I've been getting some grief lately from the fact that I have been very public about my atheism. A little bit loud about it in fact. So I thought I would explain myself.  First of all, I am an atheist because I don't have faith in anything. I don't believe in things that I don't understand. If I felt there were some supernatural force that created, controls, cares or even exists then I would believe in it and I would not be an atheist. But none of that ever occurred to me. There have been people who told me that I should hedge my bets. Not say anything bad about their god in case I am wrong. Will there are so many gods that I would have to be praying to. Why should I choose yours?

But let me back up, I was brought up by Jewish parents. I honestly don't know what that ever meant to them. I don't know to this day if they really believe in the God of Abraham and Moses, or if they just chose to follow the traditions of their parents. But for whatever reasons they tried to bring me up in their image. Beginning at the age of eight or nine I attended an after school program called Hebrew school. I honestly don't remember anything they tried to teach me there. I do remember I hated it and didn't understand why I was there at all. I also remember I did not attempt to hide that from my teachers. But in the beginning I had no choice but to attend, this was a requirement for my bar mitzvah another thing I had no choice to do. It was made clear to me that until I did this ritual at the age of 13 I was not in charge of my own religious decisions. However, there was some flexibility in actually attending Hebrew school. Since I misbehaved so much the principal/Rabbi made a deal with my parents. As long as they pay the tuition I would graduate from the Hebrew school program. So the one thing I learned in Hebrew school is that paying money to the principal was more important than learning anything.

So I did get bar mitzvahed and that was the last time I did any religious ritual at all. It's a good thing my wife and I were on the same page because we got married by a judge. The only reason my son was circumcised is because I didn't want to have to learn a new skill in how to deal with that thing. 


But then there's the question as to why I moved from being an agnostic (I
don't care), to an atheist (I assert there is no god). The answer lies in the fact that I went from being an exceptionally healthy human being to at death's door in a few days. When people found out I was in the hospital, suddenly they were praying for me. I know they meant to be nice but all that went through my head was which fucking God you going to pray to? The one that put me in the hospital? Is there a different one that can get me out of here? I really started to get annoyed with the people who said they would pray for me. I knew it would do nothing, and I was just wishing they would bring me a doughnut or something.


Then there were the people who told me everything happens for a reason. Which implies that everything happens according to God's plan. I remember laying in my hospital bed unable to scratch my own nose and wishing I can kick these people right in their groins. This totally implies that I did something to deserve the shit. FUCK NO

Tim Lawrence is a much better writer than me and he said, "Let me be crystal clear: if you've faced a tragedy and someone tells you in any way, shape or form that your tragedy was meant to be, that it happened for a reason, that it will make you a better person, or that taking responsibility for it will fix it, you have every right to remove them from your life." He even offered a replacement for the platitudes that people thoughtlessly say to a person who is been suddenly disabled. "When a person is devastated by grief, the last thing they need is advice. Their world has been shattered. This means that the act of inviting someone—anyone—into their world is an act of great risk. To try and fix or rationalize or wash away their pain only deepens their terror."

"Instead, the most powerful thing you can do is acknowledge. Literally say the words: I acknowledge your pain. I am here with you."  

I really liked it when some of my friends visited and just sat with me. But, I was kinda perplexed when someone said I'll pray for you and then they had a leave to go pray. WTF!

All right, I'll get back towards my feelings about organized religion and God. This study shows that children who do not believe in God are more moral. "the children in non-religious homes most likely to be generous toward a stranger. The longer a child had lived in a religious home, the stingier he was compared to his secular peers." Here is another super scientific study that shows that non-religious children are more altruistic than children that believe in God, "Overall, our findings cast light on the cultural input of religion on prosocial behavior and contradict the common-sense and popular assumption that children from religious households are more altruistic and kind toward others. More generally, they call into question whether religion is vital for moral development, supporting the idea that the secularization of moral discourse will not reduce human kindness—in fact, it will do just the opposite."

But nevermind these studies. I just don't understand why parents have to reproduce children in their own image. Why do parents make their kids grow up thinking that they are right and everyone else is wrong.













Then his ass holes like Ted Cruz. Thank fucking God he's not running for president at this time. So I was cursed with my sickness? You and the millions of ass holes who would vote for you really fucking believe that my sickness was caused by my ear with moral behavior.

This is why I think the planet would be better off without religion.






Then there's the ass holes who think that what they believe is more real than science. These are stupid people who are too lazy to figure things out and just float in the sea of randomness and attribute everything to what God said must happen.










Sunday, May 15, 2016

Marathon runner diagnosed with debilitating Guillain-Barre Syndrome driven to recovery, plans to walk Brooklyn Half Marathon

Two years ago, Michael Ring was paralyzed when he was stuck down with Guillain-Barre Syndrome following a stomach virus.

 (DAVID WEXLER/FOR NEW YORK DAILY NEWS)
Two years ago, Michael Ring was paralyzed when he was suddenly struck down by Guillain-Barre Syndrome. Saturday he plans to walk the Brooklyn Half Marathon.
That Ring, 52, of Park Slope, Brooklyn, is moving at all is a credit to savvy doctors and his own indomitable spirit.
“At the end of April 2014, I had a stomach virus to end all stomach viruses,” Ring said, describing how his nightmare ordeal began.
Days later, “I had insane pain in my legs and feet, which I just ignored,” he recalled.
On his twins’ 14th birthday, the family went to see “Avenue Q” and the pain switched to fatigue.
“I was dropping dishes, stumbling,” he said.
On May 7, he went to his doctor, who sent him straight to a hospital. She gravely explained he had Guillain-Barre Syndrome.
On the way to the hospital, Ring Googled it.
Ring deteriorated quickly. Within a day, he was unable to stand or walk . He fell into the unlucky 5% of Guillain-Barre patients who have a severe and unusual strain, according to Dr. Myrna Cardiel, a neurologist at NYU's Langone Medical Center.

Ring was driven to recovery
by a desire to run marathons.

 (DAVID WEXLER/FOR
NEW YORK DAILY NEWS)
“Guillain-Barre is a fairly common condition that normally follows an infection,” she said. “Most patients have that for one or two weeks and they peak and don't worsen.”
Doctors administered different rounds of medicines, including plasma transfusions and chemo to Ring, who responded well to the chemo.
He needed a wheelchair, then a walker, then crutches and continues with occupational therapy once a week.
What kept him going and why he now hopes to walk the world’s largest half marathon is his spirit.
“His mentality is unbelievable,” said Dr. Jung Ahn, director of rehabilitation medicine at NYU’s Rusk Rehabilitation.
“He never expressed or demonstrated depression as to what he had lost. His initial goal was to get back to running as soon as possible.”
Ring is the first to say that as a runner, he has always been a slow poke. Growing up in Sheepshead Bay, Ring started running in high school. He was never fast but he was steady and ran in all weather.
He stopped running in college. Then as a senior he decided to try the New York City Marathon.
“I threw up all over the Queensboro Bridge,” he recalled.
But later, trapped in a massive car jam because of the 1991 NYC Marathon, Ring vowed again to run it, this time training for two years.
From 1993 until 2013, he ran every New York City Marathon. In all, Ring completed 29 of the runs.
There were some where by mile 20 he was done. “I took a ride with an ambulance to finish,” he said.
These days he writes a blog about his recovery from Guillain-Barre Syndrome and hopes to get back to full marathons after the half.
“If I can do the half without dropping dead, then I can do the whole thing and then plop,” he said.
Despite his stilted stride and only regaining limited use of his hands, Ring plans to walk and run daily.

His current goals, he sums up, are “to finish the New York City Marathon and to use a doorknob.”
To the left is the print edition. Half of page 22 of the Sunday edition of the New York daily news on May 15, 2016. There are more than a few factual inaccuracies in the article but none compared to the headline.

Here is a link to the whole article

http://www.nydailynews.com/new-york/brooklyn/marathon-runner-paralyzed-walk-back-health-article-1.2637253





Friday, May 13, 2016

Surprise!!!

My favorite kind of art is public art. And I especially like it when it sneaks up on me. Yesterday, when I began my epic 10 mile walk in Prospect Park I came across a new art installation.  The plaque says that it was created by Carole Elsner in 2009 and will be there until May 2017. It is called Dancer. You can buy a picture of it here or you can download my photo for free. And I want to say something about this photo that your totally entitled to download if you want. I took it myself. My grip is improving and I figured out how to hold my phone so I can take pictures again. I accidentally hit the replay button, so for your enjoyment you get a GIF

I was about to say that if I would've been paying attention to the newsletters I get from the Prospect Park alliance, I wouldn't have been surprised, and that the surprise was part of the joy that this art brings. However, in my superficial search through the Internet I did not find that this art was announced by the officials at Prospect Park. More information about this art can be found on this site and I'm looking forward to seeing the rest of the installation.

Today, I had some more surprises on the bus ride home from the gym. As I was getting on I heard a voice behind me say "I like your blog". So far there have been less than a handful of people who recognized me from this blog, but it is always a pleasant surprise. We chatted for a minute and I wish I can remember for sure but I think her name was Stephanie. So, Hi Stephanie.

I'm actually embarrassed right now to say that I'm not sure what her name was. Because the next moment someone else recognized me on the bus. She was a woman that I shared a cell with when I was in subacute care the summer of 2014. I hated it at that nursing home, there were only a few minutes of sunshine in an otherwise bleak existence. Physical therapy was great but only a couple hours a day. Visits from my friends and family were joyous, but they couldn't be all the time. But of all the other inmates in that asylum there was really only one person that I enjoyed spending time with. Laura was recovering from some serious surgery and was able to go home yet. She lived all her life only a few blocks from my house in Park Slope. Today on the bus she recognized me. She remembered my wife's name, and the names of both my kids. She also proudly told me she just celebrated her 90th birthday. So, damm, I should remember the name of the woman who recognized me from my blog.

The last time I saw Laura it took two people to move me from a wheelchair to a hospital bed. I couldn't get myself to standing from a chair and if someone helped me up I could not stay up without holding on with two hands. To say the least, she was excited to hear that in eight days I will be participating in the Brooklyn Half Marathon. I was pretty excited to tell her, also.

Saturday, May 7, 2016

What you do not know if you do not have Guillain-Barré Syndrome or one of its variants

Below is going to be an ever growing list of links to blogs and videos that give some insight into what it's like to live through Guillain-Barré syndrome and its variants. If you have something you'd like to add to the list, leave it in the comments.

I'll start with my blog.  It started as a blog about running, then a blog about being a stay-at-home dad and running. Now, it's about life with the evil cousin of Guillain-Barré, acute motor axonal neuropathy. What you do not know because you are not me.

This is a link to the official list of patient stories from the GBS/CIDP foundation

Suddenly Paralyzed, 2 Men Struggle To Recover From Guillain-Barre  This is an National Public Radio spot where two men tell their story. ( have tried and failed to embed the audio, so click on the link and it will take you there.)

I GUILLAIN-BARRÉ SYNDROME: THE THREE FRENCH WORDS THAT CHANGED MY LIFE
by Bree Hogan

Guillain-Barré Syndrome for Dummies
Research, support, and personal stories regarding autoimmune diseases.


THE EIGHTH DAY It's a little teaser for what must be a great book

My Experience with Guillain-Barré SyndromeAn online scribble of thoughts after experiencing Guillain-Barré Syndrome.

Drew's CIDP Story
Drew's story on CIDP the illness and what happened to him. Relates to GBS & CIDP and treatments for the illness/sufferers. CIDP is Chronic Inflammatory Demyelinating Polyneuropathy, The acute (shorter term) version is GBS - Guillain-Barré syndrome, which apparently is much more common.





Bryan's CIDP Stem Cell Journey


Our Brush (es) with GBS ~ Guillain Barre Syndrome

My life with CIDP
Don't mistake my lack of strength with weakness! I was diagnosed with CIDP in 2005 and it's been a rough road for both me & my family & friends. I hope this blog helps others that have been diagnosed with CIDP or it's annoying little cousin GBS. With a lot of love and support we can learn to live again!


RamG Vallath - Bestselling Author, Motivational Speaker
I am the bestselling author of the humorous, inspirational book, 'From Ouch to Oops' and also a motivational speaker. I hope to touch as many lives as possible in a positive fashion. You can also check out my website, www.ramgvallath.com


War and Peace - My CIDP Journey to HSCT in Moscow, Russia

Chronic Inflammatory Demyelinating Polyneuropathy
My journey with CIDP. Chronic inflammatory demyelinating polyneuropathy. A mouthful, isn't it? CIDP and GBS are two sides of a coin. GBS being Guillain-Barre Syndrome. Comment from others, others with or without either disease or one similar, would be appreciated.


Wendy's STEM CELL TRANSPLANT FOR CIDP
I'm writing this to tell people about my history of CIDP and my Stem Cell Transplant! I also want people to hear how God has worked in my life to get me ready for this challenge and is going to use this for His glory. I am hoping to get this wonderful procedure out there to the public more so it can help more people. The facility where I am having this done is Northwestern Univ Hospital in Chicago IL. Dr Richard Burt has been doing SCT for 23 auto immune diseases for over 20 years.

Being Pollyanna
A look at how I overcame GBS and am living with CIDP


DAVID GRANOVSKY
The Stem Cell Blog


Holly Gerlach Author of "Happily Ever After : My Journey with Guillain-Barre Syndrome and How I Got My Life Back

Jan-Erik Kull´s blog Om This is a blog about my journey to treat CIDP (chronic inflammatory demyelinating polyneuropathy) with an autologous hematopoietic stem cell transplant (HSCT) at Lund University Hospital.

Rossana's CIDP/ Stem Cell Transplant journey
This will be a blog about my experience with CIDP and Stem Cell Transplant. To keep my family and friends inform of my progress and to help other sufferers of CIDP to know that there is hope for a cure.

SU BLOG WITH CIDP
AL WE LEFT IN THE WORLD WHAT IN THE WORLD WE HAVE CREATED *** *** *

SEEKING EQUILIBRIUM
HOW I DEAL WITH LIFE FROM THE WORLD OF FIBROMYALGIA AND CHRONIC PAIN.

There were four in the bed and the little one said
I'm a 29 year old geek-extraordinaire, blogging about all sorts of stuff including (but not limited to!) reading, writing, birth, and parenting, as well as a crazy condition known as CIDP, after being diagnosed with it last year.

And Rebecca's new blog R L HOLLAND MAKING IT UP AS I GO ALONG…LITERALLY

My Life is a Soap Opera
CIDP after 10 years, Nice to have a Diagnosis and Treatment

My SCT Journey for CIDP
This is my ongoing blog to document the haematopoietic stem cell transplant for the treatment of my illness, Chronic Inflammatory Demyellineating Polyneuropathy (CIDP). I was looked after by Dr Richard K Burt at Northwestern Memorial Hospital under an FDA approved clinical trial in June 2013.

Luke Wood's Blog

A Fierce Fight against CIDP - Stephanie Stamatelos

Joe Beernink
Just over three years ago, I wrote a blog entry chronicling my first three days with Guillain Barré Syndrome. In it, I wrote that recovery times vary from 3 weeks to 3 years. I obviously didn’t heal in three weeks. My process took much longer. At the three year mark, however, I can say that my recovery is pretty much done.

Guillain-Barré Syndrome A family story about a hellish condition

GBS...One Man's Journey
A description of my recovery from a life altering illness


GBS I would like to take an opportunity to introduce the most dynamic and brave little person I have ever met – my daughter, Pressley.

I Am a Guillain Barre Syndrome Survivor
Personal Stories, Advice, and Support 257 People


Demyelinated not Destroyed
Giving help and hope to those living with demyelinating diseases and their loved ones


I Got Diagnosed With a Rare Disease Today Cidp
A group for newly diagnosed people with any disease to share how you are dealing. 48 People


Hi! I'm Emmelle and I've decided to make a blog about my journey with the autoimmune condition CIDP. It stands for 'Chronic Inflammatory Demyelinating Polyneuropathy' and is one of those rare autoimmune conditions that affect the nerves in the arms and legs.

Guillain-Barre Syndrome Survivor
Life as a newly disabled single Mum


Give Me Strength When I'm Standing and Faith When I Fall
A year ago I finally hit my plateau with Guillain Barré Syndrome and started reclaiming my life. Most people don't loose their ability to do EVERYTHING and eventually get it back. For that I'm so grateful.

Dani's Guillain-Barré Syndrome Story

My Guillain-Barré Syndrome Story – Danielle Boyd
No variant; full GBS of ascending paralysis, loss of motor and sensory, and lots of pain.


The Spoon Theory written by Christine Miserandino
Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.


What the hell is Guillain-Barré Syndrome?

ADAMPOWNALLBLOG
WEEK ONE REFLECTIONS – GBS PROJECT


The Business of Bodies
Hi, my name is Paul, I’m 26 and I have CIDP (Chronic Inflammatory Demylinating Polyneuropathy). This blog will try to document my symptoms, progression and treatment from start to finish, along with my frequent encounters with the NHS in both West Yorkshire and south Wales. This blog is an attempt to keep you and more importantly me entertained on this ongoing, ruddy bumpy, uncomfortable and often frustrating journey.


I Survived GBS and OMG
A view of my fight against Guillain Barre Syndrome and how a collection of friends and family helped me through it.


Bob Martin compensation NOT condemnation





Watch this first. Then, if the video producer's name is a hyperlink they have a whole channel.



I was never ever affected by dance before.


Tyler's GBS Recovery - Day 119 - 3rd Walk



Angie Boynton Lyme Guillain Barre Journey



Mark's Journey- Guillain-Barré syndrome (GBS) 6 years



My recovery story: GBS/CIDP by Dorian Fortier



Martin's GBS Journey so far



Guillain Barre' Syndrome by Sheyenne King



“I Started To Feel Like I Was Dead” - Timothee Fighting Guillain-Barré Syndrome


Guillain Barre Syndrome: Jane's Recovery 2013



Holly Gerlach's Journey : From Guillain-Barre syndrome to Happily Ever After



Scott Clubine - Journey through Guillain Barre Syndrome



Síndrome de guillain -barre Viviane Chaves



Kit's Journey (through Guillain-Barre Syndrome)



Emily's Journey



My CIDP Physical Therapy Then And Now RAW Footage! No Egg Craig.



Jordan's Miracle Video of his CIDP Journey!



Road to Recovery Guillain–Barré syndrome (GBS)Chonpak Sirikarnwongmas



Wendy's Journey: Guillain-Barre Syndrome Wendy Perez



Guillain Barre Syndrome rarest survivor Barbra Hernandez



Katie's Story a battle with Guillain Barre Syndrome



Fight with GBS Kelsi Amen



Stevan Solares Journey With Encephalitis/Menengitis / Guillian-Barr



kayla My battle with guillain-barre syndrome



Michael's Victory



Síndrome de Guillain-Barré - Maria Eduarda



Caso Roberta (Síndrome Guillain Barré)



MJ's Climb: Journey with Guillain-Barre Syndrome



Paralyzed | Guillain-Barre syndrome



Brian Eaton-Guillain Barre Syndrome



Guillain Barre Syndrome - My Story Part 1 Jon Mailer



Guillain barre syndrome ; GBS syndrome Devesh Shah



Guillain Barre Syndrome: Taylor Crawford



Guillain-Barré Syndrome - Miranda's Journey



GBS-Bericht Jörg Bierach (Teil1)



Guillain Barre syndrome - Brenda Castellanos



Recovering from Guillain-Barre Syndrome Margot te Riele



Kyle Murphy recovered from GBS (Guillain-Barré syndrome) paralyzed for 10 months & learned to walk



CIDP Drewes proces and treatment by nickowent



Intro Vlog CIDP GBS Recovery Process Stephanie Lloyd



CIDP: Tackling a Small Mount Amarie Tackling CIDP



My recovery story Dawn Archer



Explaining a little bit about my CIDP and IVIG infusion therapy to my 4 1/2 year old daughter. eddy rolon



VLOG #1 CIDP Autumn Keener



Guillain Barre Syndrome Experience Jahmila



Getting Home to Hadley



Felix and Guillain-Barré


GBS - My Guillain-Barre story in 7 minutes Simon Arenas


My GBS Picture Story danikamc171



My Guillain Barre Diagnosis founder3


Guillain Barre Syndrome in Pictures eqshannon



Alana's Story


GBS Video Compliation IceMan's World


Road to Recovery ;Guillain Barre 10 Months eqshannon


Guillain--Barré syndrome Recovery Craig Taylor


Síndrome de locked-in Wanderlan Amorim



Ken’s story - locked in


Ken's story - locked in from neil archibald on Vimeo.

GBS Three Years-Invincible

Friday, May 6, 2016

You inspire me (NSFW)

A lot of people tell me that I inspire them. As I've written before, that used to bother me. When people told me I was inspirational, inside it just reminded me that I would give my left nut just to be mediocre again. I didn't want to be anyone's superhero, regular hero or even role model. I just wanted to be an unnoticed regular guy again. But I accepted that that was never gonna happen again.

On this date two years ago I fell on my face when I was making an easy jump into the back of an empty truck. I was supposed to visit my doctor, but the truck needed to be put back together. I stumbled into my doctor's office until May 7. She told me I had Guillain-Barré syndrome and needed to be in the hospital. By that evening I couldn't walk it all. And on May 8, 2014 it was a good thing the nurses were right there to catch me when I was trying to pee.  Read the rest of the blog posts for the rest of the story. I'm not talking about my dissent anymore, I'm talking about my climb out of that fucking pit.

I try to get to the gym now as often as I can. While I was waiting for the rowing machine to open up so I can do my warm-up I was admiring a woman on the treadmill doing a full out run. Then, I saw her do that something that I thought was impossible. She turned 90° and started running sideways on the treadmill. She did that for a couple minutes and then jumped forward again to run. Then she jumped in the air and turned 90° the other way. Kind of like the video below but she was going faster and never went backwards. When she got off and walked past me, I said that I didn't think what she just did was possible on a treadmill. She quickly replied," You can do anything if you try!" 



So, my warm-up is usually to get to 100 cal on the rowing machine. It usually takes me about 12 minutes. She inspired me to try to break 11 minutes. Boom! 10 minutes and 30 seconds. It helps to be inspired. Then I went into the weight room and added about 10% to all the machines I use.

Sunday I'm going to participate in a 10K race. I'm still using the word participate because I'm not running. I'm going to get a one hour head start and I will still finish with the back of the pack. I'm really hoping that everyone who passes me knows how hard I'm working and where I have been. Their encouragement really helps. Because, honestly, without it I would just sit home jerk off and eat ice cream.

Yeah, and in two more weeks I'm am going to walk 13.1 miles in the Brooklyn half Marathon. I don't know yet if they will give me an early start or wait for me to finish but I'm gonna do 13.1. Then the next day I'll participate in the GBS – CIDP walk and roll.  I'm going to show my neuropathy friends how far I've come. On May 22, 2014 I could not roll over in a hospital bed. On May 22, 2014 it took all I had to walk a mile with a rolling walker. On May 22, 2015 I'm just going to show up and walk a mile the day after walking 13.1.

Yeah, and I'm also not using the joystick mouse anymore. Last week it wasn't hooked up so I just reached out and started using a regular mouse. Just like that. I tried. It worked. For the most part I still use voice to text. So if you think you hear my voice in my writing, you are. This is how I tawk.

So I'm gonna start to wind down occupational therapy and go back to physical therapy. But not the same physical therapist I've been seeing. They got me from paralyzed to being able to walk as far and as fast as any tourist in New York City. A couple of weeks ago I took off my ankle foot orthotics and ran a mile. It took me just under 24 minutes and I think I look more like a bird than a human. My new physical therapists are going to treat me like a jock again. I'm can ask them to get me running faster and further. Running.

So here's the deal. I'm to keep inspiring you, and you can let me know and that will encourage me to inspire you even more.



FUCK YOU Guillain-Barré syndrome

FUCK YOU Chronic inflammatory demyelinating polyneuropathy

FUCK YOU Acute motor axonal neuropathy




Thursday, April 21, 2016

Practice and training

On this week two years ago, I was preparing to attempt to finish my 30th marathon. I had run hundreds of races some as short as 3.1 miles and a few that were actually over 26.2 miles. Getting to all those starting lines took training. Training meant long runs alone or with friends. Training ment doing speed work or hill repeats. Sometimes training involve machines in the gym. Training also meant a balanced diet. Often one race was training for the next. Runners train, we don't practice running. Sportsball players practice when they don't have an actual competition. Sometimes, people of a different generation for people who are unfamiliar with the sport of running asked me if I practiced. No, I train.

On this week two years ago I was also suffering from the stomach virus that triggered the lovely autoimmune condition that I'm suffering from. 23 months ago I was a quadriplegic in the intensive care unit (I actually like to say that I was suffering from Quadrophenia). In the hospital I remember to practice. I practiced being calm. I practiced my breathing. I practiced mindfulness. I passed hours reviewing the various courses I ran in my mind. In my mind I ran laps on the track and in reality the machines that were connected to my body started beeping because my heart rate actually started going up. In my mind I crossed all the finish lines, with real tears on the waterproof hospital pillow.

Now more than ever, I practice while I train. Breathing and thoughtfulness are that much more important when one's balance is off or when significant muscle groups are in active. I also try to get to 27 reps on most of the resistance machines. For the first five or six I try to hold back and not get caught up in the excitement of being strong. Number six is a little exciting because I passed my neighborhood. I moved through to 13 without much stress and then I get to the halfway point. Then I focus on getting to 16 where things get tough but the crowd starts to roar. The number 20, only a 10K to go. Number 21, back in Manhattan. At number 22 on thinking ahead to Central Park already. 23 and 24, I can see people with their finisher's medal, I'll get one also. At 25 your allowed to say almost there. At 26, you can see the finish line. Then all the effort that's left goes to looking good when you're done.

Thanks for the action photo, Murray.
Without much planning I decided this morning to show up for a 1 mile race. I figured I trained enough. I've taken off the ankle foot orthotics and run half a mile a couple times with no problem. Tonight, I wanted to find out what I was made of; I wanted to find out if I could race 1 mile. I honestly wasn't sure if I could do it. I approached it the way I have approached ultra marathons in the past. I knew I can do half the distance so I figured I'd push on and see how I felt at three quarters of that distance. I don't remember how I felt, all I knew is that I just had a quarter to go.

Training got me to that finish line. I don't know what kept me from bursting into tears when I did it. I guess it was that I could hardly catch my breath or that I was worried I was gonna fall on my face.

Now that I'm home and more or less alone it's good to practice my writing and to let the tears of joy flow.

And thank you Susan for catching me in this video at the finish line.




video

Tuesday, April 19, 2016

Free Flip-Flops?

They have been on 15th St. off of 7th Avenue for over 24 hours. If you hurry up they might still be there.




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