Saturday, October 22, 2016

Get on up (update again October 2016) NSFW and TMI. Not safe for work and too much information!

Now that I purchased this model from
Overstock this pops up as a Facebook ad.
Update October 22, 2016 .....................................................

It's been a long time since I updated this post. Maybe too long. Maybe I should've bought a bidet months or years ago. But now I have one.

So my dear reader, you only have to use the tip of your imagination to think of the indignities I had to go through about once a day because my fingers and wrists are is about as useful as a big of carrots. 

Now, I can get on up whenever I want to go, as long as a home. 

It might be a long time, if ever before I get to update this post again. But a lot of people only sit down on their own toilets....

..... And if anyone says I told you so, I'm you spend a few days at your place thanking you....

December 2015..................................................................................................................................

On the third to the last time I visited my friend Paul in hospice, I witnessed something no one should ever have to see. We were chatting for a while he asked me to hand him the buzzer for the nurse. We ran so many miles together he didn't ask me to leave because he had to pee. When the nurse came in he said he needed some help getting to the toilet. She then said something like, "We talked about that Paul, remember what happened last time, your legs are too weak, we have to bring you a bottle."  Nobody should ever be in the room with someone who was told they already stood in front of the toilet for the last time. 

Fast-forward a couple years and I'm in the intensive care unit this time. Remember, I walked into the hospital, but once I was there they did n't let me walk around too much. The morning of my second day I buzzed for the nurse and told him I had to pee. I made it to the bathroom but when they let go of me in front of the toilet I almost hit the ground. They said after this we'll bring you a bottle.  In that moment I was with Paul again

For a couple weeks I was able to hold the bottle, and then neuropathy started to affect my hands worse. For four months while I was hospitalized and a few more months at home I couldn't even stand and be at the same time. Then for a while I was able to stand, but I didn't have the hands to deal with the rest of the process, so I still needed a person and a bottle. A couple months ago I was able to work out the process of peeing, but pants with zippers and buttons not so much.

Last night I decided to push the envelope a little. For the first time in almost 19 months I just got up, walked to the bathroom, took a leak, and came back to the living room without asking for help. This is big. This means, that if I wearing the right kind of pants I could use a public restroom by myself.

October 2015............................................................................................................................................

I need to give this one more update. And it's also time to describe some of the processes I had to go through in various hospitals.  You don't really have to read this, because it is NSFF(not safe for work) and TMI (too much information)

When I went to the emergency room I was just wearing shorts and a T-shirt. I difficult to be moving.  I actually get my shorts on for about five days in intensive care. Then one evening a couple of nurses aides came over and said hey you want to take a shower? I had been out of bed and for five days, and wasn't thinking much about showering but it sounded like a good idea. They put me onto a thing that was like a combination of a wheelchair and a beach chair. They rolled me into a little room that had a shower and then they peeled me out of my clothes. I said out loud goodbye dignity", because I actually sort floating away like a balloon into the hospital  For the past year and a half I've been struggling to get it back.

Where do the boy parts go?
When I walked into my doctor's office back in May 2014 I knew I had problems. But one of them like was myself. Prior to all the weakness that occurred in my arms and legs, I had incredible pain. Kidney stone level pain. And I've had kidney stones and have been told I be prone to more. So I keep oxycodone around. When I had this pain I self medicated little. I didn't know that oxycodone doesn't work on nerve pain, but since the pain to go away I just took more oxycodone. It didn't help, it did make me happy but it did make me really constipated. So being a quadriplegic and totally clogged up was not a fun combination. All my fifth day in the intensive care unit I mentioned to my nurse that I got a problem, that I had not pooped in five days. She said yeah we know if nothing happens tomorrow it's all of our problem. So in the middle of that night I rang the bell.

So.....I'm in intensive care and having gotten out of bed or pooped in five days. They bring over this chair with a little hole in it and tell me that they will help me get on it. I look at it and say "but where do my boy parts go?" The nurse says don't worry about it do what you gotta do. Okey-doke he but IP when I poop. So they hit me up on that thing, but as I predicted I became a frigging fountain. Sorry.

The constipation all effects of the oxycodone lasted for about a month. I stayed on a once a week schedule during that time. In acute rehab they had better rolling commodes with my boy parts, and they actually rolled me over a real toilet. But the first two out of three poops I had at Rusk required a plumber after I was done. I don't know about you, but have ever were able to look back and say holy shit that was the biggest poop I ever had. Well, I looked back and four turds and each of them was the biggest crap I ever took in my life.

Yeah, I got regular and came home from the hospital.  That was 13 months ago. But I still needed a sliding board to get over onto a raised commode. It took me a few months but then I was able to put the commode in the bathroom and use a walker to get to it. Then the walker became unnecessary. But, I couldn't even stand in front of the toilet.

So in the spring I was able to pee standing up. It was really exciting to recycle that portable uranal.

A few weeks ago I started up Occupational Therapy again. It's great. I'm just ask questions like what do you want to do that you haven't been doing. There's been so much I've been afraid to try, but lately I've learned that I can yes drink from a glass, no more beer through a straw.

The third week of OT I said that I didn't know if I could get up off a regular toilet. So we tried it in the therapy gym. Without holding onto anything and without taking my pants down I easily sat down on a toilet. And then I got right back up! FUCKING WOW. 

Yeah, I still need a little help in the bathroom with those things that require fine motor skills from the fingers. But raised arm commodes and urinal jars are behind me. (Pun intended)

August 2015..................................

life's been getting better, been spending four or five hours out of the house it any given time. I just have to make sure I go before I go.

April 2015 ...................................

I wrote this post below back in August when I was in rehab.  Lately, I've been posting about my progress how far I can walk the fact that I can handle a flight of stairs now.  But my whole day revolves around personal needs that I need help with.  I don't need a sliding board anymore, but I can't just go anywhere.

Written from rehab in August 2014

Sometime in the next 24 to 36 hours you're going to feel the need to go to the bathroom. You're going to get up, go to an appropriate place, take off an appropriate amount of clothing, sit down for an appropriate amount of time, and when you're done you're going to clean yourself. Hopefully get up and wash your hands leave the room and move on with life.

If you are a believer thank your god that you can do this without pressing a button, and calling for help, using a sliding board and a commode chair that was specifically adjusted for your height. If you're not a believer just don't take taking a shit for granted.

Saturday, October 8, 2016

Shit people say to someone who has recently suffered a life changing illness (Updated Oct 2016) (NSFW)

 Update October 2016

This isn't the worst thing, and I get it from people who really care about me. It's been two years and five months since I was completely paralyzed, and I've gotten a lot better. But I have come to grips with the fact that I'm never gonna be the guy who can hold his fork with just three fingers. In fact, I have accepted the fact that I will always need to use some special contraption in order to pick up a fork or spoon. I actually find it easier to rest a sandwich on the top of my right hand and hold it stable with a finger from my left hand as I aim it towards my mouth. So if we go out to lunch together be prepared for a little bit of a mess. It's okay, when I'm home alone and want something to eat it's a lot messier.

Yeah, I can deal with the fact that my hands will never work like yours. But it's a little distracting to sit across the table from someone who looks at me like it's the end of the world to them .

Update June 2006

A couple weeks ago I finished the Brooklyn Half Marathon. I'm getting a lot of congratulations from people who know me and even strangers. They ask what's next and I told him I plan on completing the New York City Marathon. Some people don't know what a marathon really is, so I tell them. Then they look at me kind of crazy and say something like, "Oh, have you done that before?" I respond, "yeah, before this crap happen to me I was preparing for my 30th marathon and this will be my 20th New York City Marathon. Ironically, the last New York City Marathon that I ran I was a pace team leader, and held up a sign that said 'five hours run with me'. This year, I'll be competing as an Achilles Athlete, that means I will have guides assigned to help me."

Then they look at me and tell me that I will run a five hour marathon again or I will be a pacer again. I smile and say something like, yeah... One step at a time. But what the fuck, do they have any idea of the difference between walking the marathon distance in 10 hours and training to run it in five hours or less. NO! Or, do they know something my doctors don't. I don't get it when people just open their mouths and tell me what I will do it again. Do these people know that I can't use a porta-a-potty without help? It doesn't make me feel better when people just open their mouths and say what they think is nice. The doctors, the best doctors in the world, don't know how much more healing is in me. It doesn't make me feel better to fantasize about what I might do. If you want to make me feel better, just acknowledge how far I've come.

The lawyers make us say certain things to protect stupid people from themselves. "Past performance does not guarantee future results." Unless you really know something that my doctors don't you should keep your mouth shut.

Update April 2016

If you are the person who spent their entire life minimizing the time you spend off the couch and now you can barely do your daily activities because your knees won't hold up your excessive weight, don't tell me to rest.

I spent four months in the hospital where I couldn't even roll over in bed, I rested enough. For another year people applauded me because I can stand up, I rested enough.

Now when people tell me the rest it just makes me want to run further.

Don't tell me to rest

Update March 2016

I haven't used a wheelchair in many months nor a cane in a few weeks. Sometimes I see strangers on a bus or in the park using the same kind of equipment I used to have or in a similar wheelchair. It's hard to figure out what to say. At one of the races I helped organize, a husband pushed his wife around Prospect Park, in the type of wheelchair I used to hate, one that was uncomfortable even for sitting and torturous while being pushed over bumps. I 'ran' over to her and told her that I used to be pushed around one of those and now look at me. "I can walk". She said "no my condition is different I'm never getting out of this chair...."   I met well, really. But I realized the most supportive kind of statement isn't always that supportive. It might just remind people of things they just don't want to think about all the time.

I also should mention I have joined the Achilles Running club for a lot of their runs. I've had the pleasure of meeting lots of people with disparate disabilities. I consciously did not say "see you later" as a way of saying goodbye to blind people. But I listened to them and realized that they were saying "see you later" to people all the time. I also learned that people who I just are blind  are not always totally blind. There are many degrees of visual impairment. After one of our runs we took a breather in a playground where my kids used to play. The guide who was helping my new visually impaired friend helped her walk around all of the playground equipment so she can touch it and know what I was talking about. Then she took out her phone and started taking pictures of the slides and ramps. She said she was going to go home upload them to our large screen so she could see what we were talking about. I had no idea....

Yesterday, I attended a big family function where I saw a lot of people who haven't seen me in a long time. They were really happy to see how far I've come. Some of them hadn't seen me since I've been sick and only heard that I was paralyzed. The question I wasasked me was, "Are you going to fully recover?" Or "How long will it be until you're fully recovered". I know, I know they really ment well. They saw how far I came and were excited about my recovery. My answer was vague, "If I can recover as much in the next 20 months as I did in the last 20 months I'll be very happy." But deep in the pit of my stomach, I really didn't like being reminded that I'm never going to be the same again.

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, October 3, 2016

Glory Deferred... Again.

I was really looking forward to finishing the New York City Marathon this year. Really.

In 2013 I finished my 19th New York City Marathon while being a pace team leader. I really thought I was gonna be running the New York City Marathon once a year for the rest of my life. Then in May 2014 a terrible disease called Guillain-Barré syndrome literally knocked me off my feet. I spent 135 days in the hospital and skipped the 2014 race. In 2015 I had just regained my ability to walk so I skipped the race again. But I got all set to finish in 2016. I was going to get an early start and friends from the Achilles running club will be to walk with me.

In the past two years, four months, and four weeks I've had a lot of hard times. I spent too many hours staring at hospital ceilings, looking at wheelchairs or just not being with my family.Every time I got frustrated I always went to the same place and time.  On the day after the first Monday in November I would be able to stand with my teammates and say, "Yea, I also finished the marathon yesterday." But that's not can happen this year, because last week I stepped into a hole and broke one of the little bones in my foot.

For the 2016 New York City Marathon I was registered as an Athlete With a Disability. That meant I was gonna got an early start and a crew of guides to help me get to the finish line. Next year I'm just gonna be a mediocre back of the pack marathoner. That will be totally fine with me

This evening I was asked to be on a panel of people who were experienced with the New York City Marathon. I got to talk about being in the middle of the pack. There's one thing I meant to say that I couldn't bring myself to say........... I wanted to remind everyone that there are at least a few people that are living vicariously through them when they run the New York City Marathon.

Tuesday, September 27, 2016

75,513,600 Steps forward, one step back

Yeah, Sunday I posted that I took a fall. It turns out my bloody left knee wasn't really the big problem. It was my right foot. According to the medical report I have a "Fracture at the base of the fifth metatarsal".

The nice people in the x-ray department said they can't email me the actual x-rays but if I go back there they will hand me a CD.

Till then, I'll post this picture I borrowed from Wikipedia . It looks just like the one I saw in my doctor's office.

So I'm not running I have Marathon in Central Park this Sunday, nor a half in Staten Island next Sunday. And no, I won't be participating in the New York City Marathon this November. It will be Sunday, November 5, 2017

Metatarsal Fracture: Care Instructions
Your Care Instructions

A metatarsal fracture is a thin, hairline crack to the fifth metatarsal bone of the foot. The fifth metatarsal is the long bone on the outside of the foot. This type of fracture usually happens from repeated stress on the bones of the foot. Or it can occur when a person jumps or changes direction quickly and twists his or her foot or ankle the wrong way. This fracture is common among dancers because their work involves a lot of jumping, and balancing and turning on one foot.

Sunday, September 25, 2016

Today was a great day

Since I stopped using the ankle foot orthotics I have fallen three times. The first two times were probably a result of not wearing the orthotics. I say probably because those two times I stubbed my toe on a piece of raised sidewalk. The purpose of the orthotic was to prevent foot drop. Both of those times I was helped up by the people around me and hardly had a scratch. Today, while looking for goats with my daughter in the Vale of Cashmir I turned my right ankle on some very busted up asphalt.

I folded like a guy with bad cards. My left knee took most of the force and my right ankle is little swollen. While I was hobbling back home I stopped to take this picture while my daughter was looking at some art.

Yeah, I got home, put my ankle on ice, put my knee on Facebook and almost began to feel sorry for myself. Then, one of the many Michael rings that I became Facebook friends with posted this amazing comment "The Secret to life is get up one more time then you fall and you will always be a winner. You might have some scabby knees though." I had totally forgotten about the thing I did right after I fell. I GOT UP! 

Last week, when I was at mile 15 of 18 in Central Park as soon as I fell my friend Larry and a variety of tourist just lifted me into the air and onto the stone chair. Back in July, after walking a 5K in Brooklyn Bridge Park my friend Sheldon didn't give me a chance to stand up. Today I was with my lovely 16-year-old daughter, and I'm not saying she couldn't to pick me up. I'm just saying I want to give it a shot on my own. 

It is been two years, four months, two weeks and four days since I walked into my doctor's office and she told me I had Guillain-Barré syndrome and sent me to the hospital. It hasn't been since before May 7, 2014 that I was able to get myself up off the ground without the help of an occupational therapist, a friend or a stable object like a chair. 

So falling down ain't nothing. Cause I got up. 

Anyway, I have an occupational therapy appointment tomorrow just a few blocks away from an ER where they wont think I'm walking in with a stroke when I just want them to look at my ankle.

Sunday, September 18, 2016

On today's date, two years ago I decided it was time to check out of a nursing home because it ONLY took one person to transfer me between a bed and a wheelchair

Today, I walked out of my house at 5 AM, took the subway to Central Park and walked 18 miles without stopping. Three loops. That's what you gotta be able to do if you're going to do 26.2 miles in six weeks. A few years ago I was always shooting for about three hours at this distance. This morning I was very happy to come in right at my goal time of 7 1/2 hours. Then I took the subway home.

I was a little disappointed in myself for forgetting some of the things I've learned while training for over 30 marathons. Like that cotton socks are stupid and spandex underwear is very necessary. I also forgot to bring some salt with me. I also forgot to bring some Advil with me. I even tripped and then got up at mile 15. But I survived.

Before the race I actually went to the medical tent and introduced myself. I told them I have a neurological condition and this is how I walk. So if they suddenly noticed me at mile 12 they wouldn't try to yank me off the course for looking dehydrated or drunk.

Finishing an 18 mile race that is three loops of Central Park in 7 1/2 hours is kind of interesting. Besides my friend Larry who walk the whole thing with me, the next slowest runner behind me was my friend and teammate Aaron Koffler. His time was 5:10. The winner finished in 1:44. There's a lot of interesting and irrelevant math there. But it was an interesting race for me. I started last, behind about 5000 people. Almost all of them passed me twice during my first loop of Central Park. On my third loop there were no mile markers or water stations. But there were plenty of water fountains and I'm not to get lost in Central Park. I also didn't have a problem stopping and buying a Gatorade from a guy selling dirty water dogs. I just thought it would've been cool if he would've discounted the $3 price when I told him I was not a tourist.

Yesterday, I helped organize a GBS fundraiser walk. When they were no kids around I asked the nice person donating her time to do face painting to give me a temporary tattoo.

To get 80,000 pictures my friend Larry took about 80,000 pictures while he was walking with me. Below are the last 50 or so speeded up to make it look like I'm moving quickly

Friday, September 16, 2016


Until two years, four months, two weeks and two days ago, when a rare neurological disorder literally knocked the legs out from under me, whenever I came across a publication or website that included a photograph of random runners the first thing I would do was try to figure out if I could be in the picture.

Yesterday I took my kids for a checkup and sitting in the waiting room I picked up the latest edition of Timeout New York. Flipping pages of useless or obsolete information and adds that look like articles and articles that look like ads I stopped on this page.It is page 34 of the September 14 – 20 edition of Timeout New York.I couldn't help but study the picture.

I needed to look for clues. Where was it taken? When was it taken? Was I there?

First I noticed the obvious. This is a New York Road Runners Club event because it's an ad for their organization. That was obvious. But then I noticed the strips of paper and everyone shirt. I know that recently their open run program has been doing that to keep track of finish times.I've recently been to a few of those. Some in Marine Park, but where we started Marine park the trees are not this dense.

Then I noticed this guy to the left. He's not me, I don't know (yet) who he is but he is wearing my team uniform.

Then off to the right I found my friend Larry. That made me think this was the Brooklyn Bridge Park Open Run, Every time I've been there I've been there with him. But that doesn't mean he didn't go without me.

I tried to play what Where's Waldo but I couldn't find myself in the crowd. But I didn't give up. When my son came out I explained to him that I might be in that crowd and that my old eyes and dirty eyeglasses were not being very useful. I told him that if I was there I was probably in the back and wearing a yellow hat.

It took him no time to find me.

On the left side of the picture in the back of the crowd.

That's me, in my yellow SpongeBob hat and red PPTC technical T-shirt.

In a couple of days I'm going to participate in the 18 mile New York City Marathon tuneup race. I say participate, because for now I'd rather become much more efficient walker than continue to try to run. This summer I tried to run a couple of 5K's and my time wasn't any faster than when I walked. But I finished completely exhausted and hurting in all sorts of places. So I think until after I finish the New York City Marathon on November 6 I'll focus on walking as far and as fast as I can.

In my opinion The New York City Marathon Tuneup is one of the most important and challenging races that NYRR puts on. It might be eight less miles than the New York City Marathon, but it is three full loops of Central Park. Three times up the hills in Harlem. Three times up that hill pasted that damn cat. You are also not in the best shape of your life like you are on Marathon Sunday. It's also a little too warm for 18 miles. And the one big thing it's missing is the 2 million the people cheering for you as you run. But it's not really a tuneup, it's a gut check. If you can do these 18 miles at marathon pace you'll be ready for 26.2 six weeks later. That's what I'm gonna find out this Sunday.

And click here for my past results. But they're not really that accurate. I handful of times I added a loop of the reservoir as I was doing the loop of the park because I didn't think 18 miles was enough but I like having mile markers and water stations for the run. But for 18 miles I was pretty happy to get close to three hours. On Sunday I hope to keep it under seven hours

Watch this place for further results

Sunday, September 11, 2016

Don't worry, I won't forget. That's my left elbow in the picture

I had the impossible job of trying to keep my students calm. I gave up, and just helped them try to figure out how to get home.

The drug store on the corner quickly sold out of disposable cameras.

I found this photo on my desk in the middle of September 2001.

Friday, September 2, 2016

Lucky Man

Some say I'm lucky to be alive. I never thought so. As I've said before, surviving has been part of a long-term plan. Before I got GBS I lived a relatively easy life. But I knew the pendulum was going to eventually swing the other way and I knew I might not have been able to avoid letting it hit me in the head. I didn't know if I was going to get hit by a bus, or get a terrible infection, or cancer, or a rare autoimmune condition. But I knew if I was fit it wouldn't be the end of me. So I'm not lucky to be alive, I was prepared for this.Well, maybe living in the greatest city in the world, that attracts the smartest doctors who all compete for my business helped a little.

Yeah, I am lucky to have been born and raised in New York City.  I'm also lucky to have friends who will take this walk with me and share these pictures at the Brooklyn Bridge Park Open Run.





Lucky enough to appreciate the fact that when I finish last I get to be greeted like this

 Usain Bolt celebrates with fans in Rio
after winning the 200m final at the Olympic
 Stadium on Thursday.
Photograph: Ryan Pierse/Getty Images
Here's something I've been struggling with.... I didn't know why people are cheering for me. But then I watched the Olympics and I was really happy when Usain Bolt won the triple triple. I don't know why, but it was joyous to watch someone achieve their goals.

Don't get me wrong, I'm not comparing myself to the fastest man ever. I'm just saying that maybe neither one of us would be achieving our goals if there was no one waiting at the finish line to cheer for us.

Saturday, August 27, 2016

Hands of Stone

This is not about the movie. I imagine it in the movie having hands of stone is a good thing. Not for me. This blog post will be about the contraptions I use to get through my day having hands of stone.

Yeah, I've been literally climbing to the tops of mountains and virtually pounding my chest like Tarzan when I get there. But those accomplishments have all been about my lower limbs. My upper limbs have not been healing that fast.

To get through my day I need a little help. The thing that's been helping me for a long time I can't show you a picture of. I couldn't write this blog without the help of Dragon. It's the software that allows my PC to take dictation for me. I don't use all its features because I can awkwardly use a mouse, but for more than a few sentences the keyboard really doesn't work for me. I used to need a joystick mouse to move the cursor around and a big pushbutton mouse to click. But now I can use a regular mouse.

I get a lot of help in the gym from a active hands (to the right) and a cock up split (left). The splint simply keeps my wrist from stepping back when I work out on the resistance machines that I have to push. But most of the upper body workout machines are bars that you pull. And using the active hands I am able to slide my hands over the bars and get a grate upper body workout. I need to use these on both hands and cannot put them on myself. But if I get some help putting on the active hands at the beginning of my workout and then switch to the splints in the middle I can handle everything else by myself. When I started going to the gym I couldn't handle adjusting the seats or moving the pins around on the weights. I can do that now

In order to hold an eating tool or a pen I have what is called a universal cuff.  I keep the one to the left with me when I go out so if I wind up in a restaurant I can have something to hold my fork or spoon with. The slot that the utensil goes into rotates 360°, so it is also good for a pen if someone insists that I actually sign my name. I use it on my right hand and I can get up there without any assistance from someone else. I can also get the fork into it if I start with the fork in my mouth. The universal grip at right works much better because it supports my wrist. I keep it at home because it's so bulky.

To the right is a device I just discovered and I wish I found a long time ago. Most people don't think of how many times they need to open a package or a baggie. Until I got this is a sealed bag was a stopper for me. Now I can open the mail or bag of chips without asking for help.

It is called a push down tabletop scissor, I call it independence

Thanks eBay vendor McDonald832.

To the left is a handy device I also should've got a long time ago. For a while now I've been able to go out of the house and walk around the park or the neighborhood. But I couldn't get back into my apartment in less someone was there to open the door. With this I could lock or unlock the door. I also looped some TheraBands around the knob so I can pull the door shut. Without them I had to use two hands to pull the knob closed and would inevitably shut the door on my own thumb.

The front door of my apartment building is part of a landmarked block, and changing the doorknob or even the lock would require lawyers. One of my occupational therapists told me that I could sue my building to get them to install something so I can get in and out. I told her that I'm on the board of my co-op and I can just get a pushbutton lock and a lever installed on the back door.

That was easy

I can put my socks on with the help of this...

And my shoes on with this

And they stay laced up with these

I can cut my fingernails with these. I'm still working on the toenails though....

I can take a shower and wash all my parts with this loofa. I actually recommended to all people. ($1.49 shipped all the way from China!)

I'm sure I'll be getting a few more contraptions to help me through my daily life. I really have just one barrier to complete independence and that is as my friend Josh put it the Holy Grail of contraptions. Soon, I'll be able to climb the mountain and pound my chest with joy.


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