Tuesday, February 9, 2016

Yesterday was my best day and while

In the morning I went to the Park Slope Armory for good workout. When I got there the truck was available so I figure I would see how far I can run without feeling like my knees were to go out on me. Walking is easy. I'm feeling like I can do that all day. But running is different you land on those knees a little harder. I felt really good at the end of two loops on that 200 m track. So I did another and another. I went home and brag to my son that I could for loops of the track, a quarter-mile. He looked me right in the eye and said no dad, you read half a mile. I think that way of finding out I ran further than I thought was the best. Yeah, in finding out your kid is smarter than you. Priceless

Then I took a walk with my daughter, to buy some supplies for her art class. My daughter goes to a special high school. I'm not allowed to say which one but they made a movie about it. So we went to a special art supply store in the neighborhood.  She loves this place....



We got kinda separated in there, so I sat in a corner and let her shop. After a while I started looking for her, without much luck. I asked one of the staff members there he saw young woman with purple hair. They simply replied that that doesn't narrow it down much around here.

Oh. I forgot to take my cane with me. Just forgot. I don't think I would need any more. Got on and off a city bus no problem. 

Wednesday, February 3, 2016

I was really looking forward to last night's Saturday Night Live (updated with video of Larry David nailing a Bernie Sanders impersonation)

I usually don't pay attention to celebrities. But, Tracy Morgan and I both spent last summer in the hospital, So, it really made me happy to see them on the stage at the Emmys of month ago. I also made a point of staying up late last night and watching them host Saturday Night Live.  Many people have told me how happy they are to see me recover. So, Tracy, I know you're an  A level celebrity and I am only a D level celebrity. And I know you'll probably never read this, but from one recovery person to another, I'm really happy for you. Congratulations!

But, I have to say the wonderful and obvious use of Larry David to play Bernie Sanders was wonderful. (See below). Probably more so than the directors thought. Of course they act and sound the same. They grew up together. They might not have known each other but they grew up together, or at least in the same world.

Check out this rare video below of Larry David totally nailing a Bernie Sanders impersonation





Bernie Sanders went to Madison high school (with my mother). When he was there he was captain of both the cross-country and track. When I ran track, for Sheepshead Bay, the only school we have a beat was Madison.

He graduated in 1959, two years after my mother and eight years before my neighbor, United States Sen. Chuck Schumer.

Madison probably had about 3000 people in it when my mom went to school. She wasn't friends with Bernie, but they definitely walk the halls together.

(I might be updating this soon if my mother can find a picture of Bernie Sanders in her yearbook.)


UnlikeReply113 hrs












Larry David graduated Sheepshead Bay high school when I was two years old, in 1965

(Jerry Seinfeld was born in Brooklyn, but did most of his growing up in Massapequa. But on his TV show he went back to his junior high school with George. For the TV show they used the outside of Edward R Murrow High School. A few of my friends have taught there. In 2000 I was asked to be a Sing! Judge. I remember giving the senior band a high score for being able to perform so stoned)

(Update from Sheepshead Bay High School Facebook page


S***** H***** I grew up with Larry and knew who he hung with, Bernie was not one of them. Maybe Larry's older brother Kenny who I believe went to Madison knew Bernie. )

J*** B****** I also graduated with Larry David, SBHS '65, but I did not know him nor do I know anyone who did know him.

























If you ask Google to connect their childhood homes by bicycle route, the ride would pass the house I grew up in. The red dot (naturally) is the house Bernie grew up in. The purple dot is Larry David's childhood home. My mother grew up near the blue mark, and I was raised under the green mark.

I can't find any evidence on the Internet that Larry and Bernie ever met when they were growing up. But it is pretty clear that they grew up in the same world.




Thursday, January 21, 2016

Achievements and goals

My physical therapy has really become go to the gym, run on the track. Yesterday before I played with the resistance machines I ran three times around the 200 m track. Each lap was under three minutes. That's an eighth of a mile and three minutes. I need to do that about 200 times to complete the marathon distance. 600 minutes, 10 hours. The first Sunday in November. I'm ready.

Occupational Therapy has split into its main components. Learning how to live my life with my Center for Musculoskeletal Care. I spend my time there in rooms where everyone is specializing in hand therapy. Today, I sat next to a woman who is having a hard time with the workout. She was doing something that I had not been instructed to do since I was inpatient at Rusk. She was just sitting at a table with her elbow in front of her and her hand laid out flat. She was attempting to move her hand from 12 o'clock to 2 o'clock and then back to 12 o'clock. Been to 10 o'clock and back to 12 o'clock. If you're sitting at a table now, try it. It's easy, right. But for the summer of 2014, I couldn't make my hand budge. I would just roll my wheelchair up to the table and put my elbows on it and watch nothing happen. I didn't even remember I have that problem until I saw that young woman during that same exercise.

I've learned to use a lot of adaptive tools to get through my day. The big accomplishment of this week is that I shaved that face. Yeah, I set the razor for grubby, because I knew I wasn't to do a great job. But I shaved that face.

For the past 20 months a lot of great people were helping me a lot. I really appreciated the help from nurses and family and friends. But I gotta say I was really sick of people sticking their hands in my face to feed me or brush my teeth. The last trick I needed to learn to do was shaving. I just grabbed the electric razor with two hands and rubbed it across my face. I had trouble with the little button to turn it on and off but I realized I can just push it against the corner of the sink. Yeah, occupational therapists get you do things you think you can do anymore by just convincing you to try it.  Now I just have to try to use these, and I'll be alright by myself.

They also get you to do things you couldn't do any more by pointing you to tools that can help you. my own fingernails today.

Who knew that this existed.

Ableware 741400000 Press-On One-Handed Nail Clipper by Maddak


Monday, January 11, 2016

I turned the corner

Because I have a new song in my head. I'm usually humming Sympathy For the Devil which is nothing but a soundtrack for a murder. Sometimes, the Johnny Thunders version of Pipeline. That's the background music to a brawl that I actually attended (Click on the link, you can see my hands at1:10). Other times; Paint it Black, 19th Nervous Breakdown, yea some dark Rolling Stone songs. In my head I also hear a lot of Baba O'Riley (I don't need to fight: To prove I'm right: I don't need to be forgiven). of course, the Ramon's are always looping through my head. (I can't control my fingers...). When I'm in a better mood, I've been humming the Grateful Dead version of Not Fade Away.

But today, a new tune snuck in. Not really that new, more like an old friend that I haven't seen in a while. Ode to Joy is the tune that goes through my head when I can see the finish line. Today after my workout I went on the 200 m track. For the first 150 meters I jogged that clunky jog that I've been doing with the orthotics in my shoes. But with 50 meters to go, I pushed the envelope a little.   I pushed myself to within about 75% of falling down. I ran, Heal, toe, heal, toe, heal, toe... And I was airborne. I ran.

When I got home I went to the Internet to find the song that came back to my head. At first I was looking for punk rock and heavy metal versions of Ode to Joy. But it was this version that I heard. The video that goes with it is so appropriate. So much motion.  Crank it up and then read the rest of my blog.


Ode to Joy - Rock version by Ana Rucner from Ana Rucner on Vimeo.

When I finished this epic 200 meter loop one of my son's friends was waiting for me. When Owen was about eight years old, I happened to be sitting next to his mother the time he ran with the Prospect Park Youth Track Team. His warm-up was two loops of the track, and when he started his second loop I saw him look at his mother. The look on his face was pure joy. It was"look mom, this is where I belong." Now he's a teenager. He just came over to shake my hand, and tell me it was good to see me run. I told him I was glad to repay him, that it was good to see him run a long time ago.

Then I told him to go tell everybody what I did.

Tuesday, January 5, 2016

Back to church

First, a little review. On May 7, 2014, about 20 months ago, I walked into my doctor's office complaining of weakness in my feet and hands. She quickly diagnosed me with Guillain-Barré syndrome and told me I better be in the hospital. They admitted me, and by that evening I couldn't walk at all. The paralysis overtook me and waves and after a few weeks I was we diagnosed with chronic inflammatory demyelinating polyneuropathy. After the third setback I was finally diagnosed with acute motor axonal neuropathy. So I have an extremely rare variant of a very rare illness. For most people with GBS and its variants the immune system attacks the sheaths of the nerves. Not in my case. For reasons still unknown, my immune system attacked the nerves themselves, the axons. And, to keep this even more unique only the motor axons. So one could say I'm a little lucky that my sensory nerves are not affected. This condition does not cause me any pain. (But please, don't be the one who says I am lucky because I'll kick you in the teeth.)

Before I continue, let me enumerate some of my recent accomplishments.

Not so much with the belt
  • I helped locate the mile markers for race in Prospect Park. In doing this I walked the entire loop of the park without the use of a cane.
  • I can hold a bottle or it can. This means I can stop drinking beer with a straw.
  • I can get on and off an Eck Stress O Ride bus without using the lift. Getting down that steep flight of stairs was the challenge.
  • I can get out of bed, put my own pans on and brush my teeth. (If the pants have an elastic band)
  • I'm okay being alone in my house for a few hours.
  • I moved the wheelchair to the back of the house. It's been a while since I used it, and I can't imagine using it again.
  • The real big deal of the week is that I was able to get in and out of a public bathroom to take a piss by myself. The funny thing was, that the stall door got stuck and I couldn't pull it inward to open it to get out. I had no problem asking someone to give it a little push to free me.I probably would've had that problem two years ago, as well
I've always been a few standard deviations out of the normal zone. So there's more uniqueness about my condition. When most people think about paralysis they think of someone in a wheelchair. That's not the case for me anymore.

My lower limbs have been healing much faster than my upper limbs. I still have severe foot drop. But, with the help of an ankle foot orthotic I can walk further than most people. I'm not as fast as many of my friends, but I'm told I'm as fast as a tourist in New York City.

The device to the left keeps me from tripping over my own toes.

If I'm planning on going to a crowded place, or use mass transportation or think I'm going to be going down a staircase I take a cane with me.

The biggest challenges of my day come from the fact that might upper limbs are not healing that fast. My triceps are okay but not so much in the biceps or anything south of the elbows. That means I have a hard time holding things. Things like spoons, keys, doorknobs and pencils or a real challenge for me. A challenge, but not a stopper

With the help of a universal grip, I could use a fork, spoon or a pen. It's not that pretty when I eat and my handwriting was never that great. I'm about to change the doorknobs to my apartment and from the apartment to the street to one with a bar instead of ones that are round so I can get in and out without help. Also, the pushbutton combination lock will replace the key.  As far as the computer goes, 99% of what I do comes to you courtesy of voice to text. Thank you Dragon.


In the gym I use a thing called active hands. With them or another kind of split that just keeps my wrist rigid, I can get an upper body workout on almost all of the resistance devices. As for the legs, I have no problem using all of the gym equipment. On some of them I'm pushing as much weight as a "normal" person. I just need some help adjusting the seat level or moving the pin around on the weights.

Oh, more about my hands. It seems they are suffering some additional collateral damage. The muscle atrophy that has set in due to the lack of nerve function has allowed the tendons in the big knuckles to stiffen up so my hand will not close into a fist. At the same time the tendons in my small knuckles will not allow my fingers to straighten. So the occupational therapists have a lot of work to do. They sent me home with a pair of contraptions that I get to put on my hands multiple times a day. It might look painful but it's not. And in fact it's a moment of Zen. Because my wear them I really can't do anything.


And I just joined the new gym. It's more than a gym. I joined the Park Slope Armory YMCA. I was there on opening day and wrote this blog post my running club. When I walked in there with my carer. I paused in the doorway to take it all in. The smell of it. The sound. It all came back. She is a person of faith, and since I am a rabid atheist we often tap heads. I looked at her and said," this is my church, this is where I gather with my people, and get advice for my spiritual leaders." She looked at me and nodded with understanding.


I took this picture almost 6 years ago, on January 11, 2010

Sunday, January 3, 2016

Shit people say to someone who has recently suffered a life changing illness (updated January 2016)


Update January 2016

Included in the doctor's letters that they wrote for my disability insurance includes the statement, "the patient does not suffer from any psychological or cognitive impairments." The following two statements come under that category.

  • A friend asked me if I needed any help getting out of the car. I said, "No I'm fine." When I was getting out of the car his hands are all over me. Dude, you asked me a question and I answered it. Why did you ask it, if you're not gonna follow my instructions
  • another person thought it would be a good idea if I went to a certain meeting. Then he called me back and said it wasn't that important because of my condition. My condition does not stop me from making that decision for myself.
Here's the big picture. If I need help, I'll ask for it. Please don't make a big deal out of what you think I can and can't do. I don't know what I can and can't do so what makes you think you know?


Update December 2015

I just realized the same crap came out of this one person's mouth in just one week.

  • He said he didn't know where to sit in the car because he had to figure out where the "cripple" would sit.
  • He was surprised that I walked to a party that was a mile from my house. He said, "Did it take you three hours to get here."
  • I don't have enough strength in my hands to hold onto a pencil. He reached out to shake my hand and when I shook as he said, " Ack, you should shake like a man."
BTW, this was a grown man.



Update August 16, 2015

In one breath someone called me a gimp, and the next breath he said I might be too drunk to drive you can come with me you couldn't get any more fucked up. If I thought he was too drunk to drive I would've gotten the car, and I would've forgotten he said that.


Update July 29, 2015

Don't make jokes that you wish you had a wheelchair. Don't fain envy. Don't tell me you want to sit on my lap. Not remotely funny! And I have to clamp a thing onto my hands so I can hold a fork. Don't look at it and say I wish I had one. No you fuckin don't!

Update May 23, 2015


Last night I was reminded that Tom Cruise is a good actor.  He played Ron Kovic in Born on the Fourth of July.  That scene where he came home from the VA hospital in wheelchair His face as everyone told him he looked good. I cried inside.

Update, May 3, 2015

This is something that's been done by a lot of people who I really care for.  Just because of sitting in a wheelchair and my back is to you and I don't know you're there doesn't mean you could tap me on the head.  I hear fine if you say my name turnaround.


Update, March 16, 2015: 

The worst thing you can do if you see someone you think you know and suddenly in a wheelchair is  to look away.  Yeah, I'm the guy who helped to you unload a truck at the food co-op, or I might be the guy you ran all of the Park with, or I might be the guy who just cheered for you when you ran a race. I am still the same guy!!! You can say hello!!!


I know a lot of you people might be shocked to see me in a wheelchair.  But please engage the brain before you open your mouth
.
- Well, this might not have happened to you if you didn't push yourself so hard with all that running
Actually I probably would have been a lot worse off or even dead if I wasn't fit when this happen to me.

- Is disability temporary or permanent?
It depends how long I live and go fuck yourself.

- I know someone who has something like what you have.
No you don't, you don't even know what I have.

- I just remembered another one. When I was in the hospital and couldn't get out of bed people asked me if the nurses who bathed were hot.
I honestly didn't think of that until people asked. But it did make me wonder if their moms were hot. 

Okay, The crap above represent shit that came out of peoples mouths who knew me. Below is the shit people say to be to a stranger
I'll pray for you
Really, which God?  The God that put me in this chair or the God that you gonna pray to that will take me out.  I think it's pathetic that these believers assume I'm one of them but I've learned to just say thank you.

Everything happens for a reason
I don't even know if this can possibly mean. And my being punished? Am I suffering because of the fact that someone else got lucky?  Do they think that they has to be some sort of balance in the world and I need to be on the bottom put them on the top? So I just roll my eyes and ask someone to push me away from that person.

I'll add more as people say more shit to me.  Or you could leave your stupid shit n the comments.

Monday, December 21, 2015

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.

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


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.

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

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.



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

Friday, December 18, 2015

This is why I love my mom

Because she wanted to make something for my son and I told her he was into Star Wars and Star Trek.


Monday, December 14, 2015

That means that the performers will periodically dance about and burst into song.

About 20 years ago, I saw two Broadway musicals in one week. Les Misérables and Showboat.  I was able to review both in one sentence. The chair was much more comfortable at Showboat. To be honest our seats for Les Mis were in the front row of the balcony of one of those old Broadway theaters.That morning I had done a long run. So, squeezing into that chair and then climbing down the stairs after the show was not so much fun. But, I was impressed with the scenery and Showboat. When my kids were itty bitty we got all dressed up and saw The Nutcracker at Lincoln Center. My son was only comfortable if he sat on my lap and put his face in front of my eyes. I saw no reason to twist my neck to look at the stage. So, I was the guy who woke up and put his coat on during intermission and thought the show was over. At $150 a ticket I would've had a better time sitting in the car.

Yeah, I'm that guy. Some people say I shouldn't brag about it. But, I grew up slam dancing in CBGBs, jumping on stage with the likes of Jell-O Biafra and Johnny Thunders. I was ready to quit a good job because my boss wouldn't give me the day off to see the Ramones.   One of the highlights of my young life with being in the front row of a Clash show, so that Joe Strummer's spit would land on me (I still say fixing his teeth ruined his singing voice.) I don't know, I have a hard time going from that to lavish Broadway musicals.

So why did I pay $30 for a 20th row seat to see Disney's version of Beauty and the Beast? Because
that seat was next to my daughter.  She wanted to see her friends in our school's production. Why $30? Because my daughter goes to LaGuardia. She is not in the drama department, but a few of her friends are. And she gets to go to school where they have a functioning turntable on the stage.  And here is my review....  "There was nothing high schoolish or amateurish about this production. Any of the actors, singers, dancers or members of the technical crew could've walked a few blocks down Broadway and performed for people paying 10 times as much".

But the plot lost me. I can understand household furniture that sing and dishes that dance, or a prince turning into a monster. But there is no make-believe universe where a father would allow his child to take his place in prison. I know this from personal experience.Because, the only thing that keeps my heart beating is knowing that in an alternate universe I traded places with one of my children so that they won't be in the prison of neuropathy

Back to my youth....... When I was slightly older than the age she is now I saw the band Yes in Madison Square Garden. It was the first giant concert I have a went to. The band was touring on its new album called Roundabout. The stage was set in the middle of the arena on a turntable. Our seats were way up in the Blue Section and I hardly remember the concert. But I remember the subway ride home, when I said was a cool that the band was in the middle and they were going round and round and up and down. My friend said what you mean up-and-down they will only rotating. I fell onto the floor of the subway car laughing and said you mean I was the only one saw it going up and down? I do hope my daughter has as much fun as I did when I grew up and doesn't tell me about it for 35 years.

My daughter is named after a character in a movie. Here's one of my favorite exchanges of dialogue from that film.

Linus Larrabee: And I want tickets to whatever Broadway show nobody can get tickets to.
[Mack looks inquisitively at him]
Linus Larrabee: I know, I seldom go to the theatre.
Mack: Seldom?
Linus Larrabee: So, I'm not a theatre buff.
Mack: Buff? The most difficult tickets to get will be for a Broadway musical.
Linus Larrabee: [distractedly] Okay.
Mack: That means that the performers will periodically dance about and burst into song.

However, I just saw this video and thought I'd ad it.




Friday, December 11, 2015

Just say "Hi!"

Couple of days ago I thought will be a good idea to walk up to some random Muslim people I encountered and apologized for Donald Trump.  Yesterday, I was thinking a way to start the conversation when I was in a taxi on my way to my doctor's office. The cabbie's name was something I couldn't possibly pronounce but I wasn't sure if it meant he was Muslim or not. Then this video came on in the backseat.



Just say Hi
So I decided only to talk to him about the traffic.

First of all maybe he wasn't Muslim, how I would know.  But bigger than that was the fact that I didn't want to rub salt in the wound that Donald Trump might've created for him. Why should I remind him that there is a giant ass hole telling the world he is a threat to them. Why should I remind him that people are treating them differently because of his name, or his accent, or his possible faith.

Just like I don't like being reminded that I am any different.

Just say "Hi!"

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