For Jared’s Benefit

https://www.eventbrite.com/e/for-jareds-benefit-tickets-27268737528

This is a post from John. I am sending this post to everyone that may not have seen it via FaceBook. My childhood friend Tim Grady and Steven Prasinos have been working to put this event together for Jared and I wanted anyone not on FaceBook to have a chance to hear about it. Jared is back at school doing very well. He will be home for his first break and will be at this event to see eveyone able to make it. There have been so many people that have reached out to Jared and continue to have an interest in how he is doing that I wanted you all to be ware of this should you want to come and see Jared.

A year ago this past May, our old friend John Grier’s son Jared, then a freshman at WPI, fell from a tree broke his neck, and became paralyzed from the chest down. Since that time, through hard work in rehab every day, Jared has made remarkable progress and will continue to do so.

John and his wife Sue have been devoted in helping Jared learn to accept and cope with the realities of his new life.

In addition to the physical and emotional toll Jared’s injury has taken on all the Grier family, the financial burden in supporting his recovery has been immense. Costs include wheel chairs, house remodeling, rehabilitation, visiting nurses, accessible transportation, and medicines.

Many have already stepped forward and generously given their support.  Still, significantly more help is needed.

Please join Jared’s community of family and friends on Sunday October 23rd at the Cypress Grill in Middletown, CT at 2pm for a benefit in his honor.  There will be food, live music, raffles/silent auction.

We hope you will join us!

Even if you can’t make it, please consider buying a ticket to support this courageous young man.

 

An Overdue Update

A lot has been happening recently and if you told me how much work it would be, between paper work, figuring out accommodations, doctors’ visits, and much more to get back to school I wouldn’t have believed you. But believe me, it’s ridiculous. Luckily I paid my fall bill last week and ‘just’ need to pack up so I think I managed to complete it all.

Words can’t really describe the whirlwind of emotions I feel as I think about returning to school. As each day passes and I get closer to the move in date the storm seems to just get stronger. I have no way of predicting or preparing for taking on college as a quadriplegic. I’m confident I’ll make it through but I know it’s going to be rough road getting there. So bear with me out there WPI kids.

On another note, I’m very close to having a modified vehicle customized and fitted to me. Among all of the basic things I’ve lost in life, the ability to hop in a car and just drive is pretty high on the list. Anyone who’s had a license suspension understands just how terrible it is to one day be able to get from A to B in a snap and the next be completely grounded with no easy way to get around. Luckily those days are soon coming to an end. The vehicle is underway and once it’s delivered I only have to drive a few hours with a DMV evaluator and I’m good to go! It honestly feels like I’m 16 again. Except just as always with everything sweet it’s also sour somehow; a part for the car, one that I might not need but has to be installed, isn’t working properly and has to be shipped all over the place. This has considerably pushed the completion date back so it looks like I won’t have it for school…

At least there’s completely unrelated good news that I can distract myself with! One of the many great outcomes from my last visit to the Shepherd Center for a research checkup is that my injury classification has officially been upgraded! I’m now considered to have the function and sensation of a C7 spinal cord injury; I originally suffered a C6 spinal cord injury but have neurologically regained muscle function, primarily the triceps, and sensation down to my middle fingers’ tips. I emphasize on ‘official’ as this classification is based on a stringent test that works off of a standard and checks specific spots only. Basically I have muscle function and increased sensation in areas not documented by the test. The big ones are chest and left lateral muscles and pressure sensation from my waist to my knees, my left ankle and most of my feet including the bottom, top and just about each individual toe. So I’d say I’m definitely improving!

Looking at life in a more general sense, I feel great. I’m past the spinal shock phase and feel much more in tune with my body. My strength has increased heavily and I’m able to do so much more physically. I can get in and out of lower couches with no assistance, transfer into low cars without the need of the transfer board (I still need it on the way out), and move around in bed or on my exercise mat much more easily. That all seems simple but it has a huge impact on my motivation and attitude. The more I do, and do on my own, the better I feel as an individual. It feels so good to be able to say I’m fully independent with all of my personal needs. Getting up, using the toilet, showering, getting dressed and rolling out the door are done with relative ease and leaves me with enough energy to still take on the day… it just takes two hours.

Unfortunately there are still many moments that cause me to lose sight of my accomplishments and the future. There are so many variables and unknowns with this type of injury that everything might seem like it’s going great and out of nowhere it all goes to shit, literally.

I hate complaining about the immense difficulties I face most days in order to keep my body in a stable state. I don’t like worrying people by talking about the losses and issues that endure and deal with. Sometimes I guess I just feel like expressing the other side of things. I am motivated to get back to life and I want my independence more than ever but it’s easy to lose sight of those things when you can never quiet your mind and are plagued with daily issues. If you told me I’d walk in ten years it wouldn’t make the time leading up to it any better.

Worry not, for the most part I’m in good spirits and excited for the future. I’ve always been a problem solver and this injury has presented me with quite a lot of problems to figure out. Plus getting back to school, having classes to occupy my mind and returning to a much more social environment where I can meet so many new people will be monumental to my mental health. I focus on the positives and try not to let the anxiety and fear take hold.

If you’re struggling with something in life, try to look at the big picture. Don’t let the awful moments be anything more than just a moment. We only have so much time each day, don’t waste it moping around.

One Year Later

It’s always fun as a child to think about where you might be in life years down the road. Whether it’s 21, 45, or 80, our fascination for where life might take us never seems to end. Driven by our hopes and dreams we create goals and life milestones in hopes reaching that wonderful point in life that we couldn’t stop thinking about as a child. It’s not until the candles are blown out on the special day that we realize how far removed our lives have become from what we imagined years ago.

This realization is inevitable each and every time we reach one of the milestones we’ve set out before ourselves. By no means is this realization a bad thing, it’s an expected outcome due to the natural, unpredictable progress of our lives. So much happens in the years leading up to each significant milestone that if any of your life resembles what you hoped it would be as a child, you ought to be impressed with yourself.

Understanding that life will never truly work out exactly how you want it to is the first step in gaining control of it. Accepting the wild and sporadic changes as beneficial, reacting appropriately to them, and ultimately rising above whatever adverse moments you may encounter determines who you are each day of your life. Every event adds to your character and dictates the person you see in the mirror when you wake up the next morning. The important thing is to love what you see.

When you are nearing the end of your life and you decide to reflect on your past years you have to choose the correct perspective to observe from. It’s completely irrational to reflect on life with the notion that you didn’t achieve what you had dreamed of as a child. You have to look at your past knowing that you made it; that you’re still alive. Through the hundreds of events you’ve struggled to overcome, the emotional turmoil you endured for years, and the tragedies you’ve survived. You’ve hit rock bottom over and over again, spent days weeping, and decided to just give up countless times, but here you are.  At the lowest points in life, when all seemed lost, the innate drive to survive within you looked despair in the face, grinned, and pushed forward. Each and every time. There will never be anything more valuable in life than the years that make up your own.

The important thing to do today isn’t to look forward and worry about where you might be in a year or two or ten, but to look back and see where you are after all of the years you’ve already survived. If you made it this far, nothing in the next year or ten can stop you.

That’s the best part about the human body; it doesn’t let you give up. No matter how bad it gets your body will never stop fighting to survive. It’s the most powerful organism in the world yet some live their life never fully understanding how they’re even alive. It was difficult for me to fully understand the total scope of complex biological processes at play, even with just living day to day, until I lost so much of it and have to spend each day observing those who still have it.

It never occurs to anyone that there would be a definition for the basic, mundane activities you carry out each day or how much is in place to provide for those that can’t fulfill that definition. ADL stands for activities of daily living which encompasses the things we normally do on a day to day basis including any activity we perform for self-care such as feeding ourselves, bathing, dressing, grooming, work, homemaking, and leisure. For your entire life to this point and hopefully for the rest of it you’ve never given those activities a second thought. They are innate and simple, they are done daily and some to such a routine you could do them half asleep and probably have. It’s not until you wake up one morning lacking the ability to easily complete said activities that you truly understand how amazing the processes are that give you the ability to survive at the most basic level.

As someone who has had the unfortunate opportunity to experience that misfortune firsthand and gain that understanding over the past year, the new perspective that you generate is truly remarkable. When I look at people my eyes spend little time on their face. I instead spend my time observing the intricate functioning of the human body. I pay close attention to the amazing dexterity of their hands, I watch the muscles and tendons move under their skin, how they sit, move, and control the amazing piece of biological machinery with the most basic understanding.

From the beginning of my injury I made it a priority to regain my independence. Experiencing life with total loss of control over your ADL really brings you to a new low. When you’re in a position where someone has to roll you side to side and wash you with a cloth and soapy water you truly see how far removed you are from normal life. Lying in bed stuck in one position due to the inability to move your body at all really hits hard. Getting from place to place in a chair, moving no part of your body but wrist and arm on a joystick, having to be lifted with a net from chair to bed and back, the only two places you can be, is awful. There’s no other way to put it. Having to live through and experience this pushed me each day of my new life to get better. I knew my life was forever changed and it would never be the same as before but I also knew that there was no way in hell that it would stay like this. It’s was going take time, energy, and a lot of devotion but I knew I could take my life back.

One year later I can proudly say that I’ve made tremendous progress in reaching that goal. Just my ability to move around in bed is staggering compared to 9 months ago. I can get in bed, lie down, roll to my sides and stomach, sit up and get back into my chair with zero assistance or assistive devices. I can hop from my chair to a shower bench, fully shower, get out, dry off and get completely dressed. I can even put on tight long socks.

Now although this is all really basic, and I’m sure you’re trying your best to put yourself in my position, so just as a reminder, I’m working with only 5 muscle groups, and I can’t use my hands. No hands, no finger movement, no pinch, no grip, no hook and pull, nothing. It does not make anything  an easy process. But I found a way. I’ve figured out how to do so much with so little. I’ve cooked pasta, made egg fried rice, I can write, draw, and sign my name. Whatever task I encounter that I used to do with complete ease, I now struggle to complete. But I try, before I ask for help or let anyone help me, I try to do it on my own. There were tasks someone else would always complete for me; I figured I just couldn’t do it. Instead I was thinking up things to build to assist in many tasks. Then one day I just tried. And to my surprise I did it. No need for some device or someone else to help. I found that I couldn’t look at things from the perspective of before my injury. I had to take each task as a brand new one and figure out how to do it. More and more I impress myself with how much I can do with how little I have.

After this first year I got to say I feel pretty good. I’ve hit a lot of road blocks along the way but I kept going. I pushed hard and tried to make the most of each day and I’m happy to say it paid off. As I said before I still have a lot yet to overcome but looking at how much I’ve done so far just energizes me to keep going. So much has happened; I’ve done so much and met so many amazing people, I can’t wait to see where things go next. It just goes to show that nothing can stop you from living life except for yourself. The only hindrance, opposition, or disability anyone truly has is their mindset. The human body and consciousness are beautiful things that can complete amazing feats and overcome anything.  Never take that for granted.

The Hold-you-over Update.

I was thinking about waiting until the one year mark to write up a post but the more I thought about it the longer that post became. So this will serve as a prelude to a larger update of sorts coming in May.

Something I’ve begun to learn as my recovery has progressed is that being a research subject isn’t all its cracked up to be. When you throw in the complete unknown that comes with being the first recipient of a strand of stem cells on top of an injury that already perplexes the medical community it only increases the number of times I hear “I don’t know” from my doctors.

There’s always seems to be something strange going on with my body or some new issue arising. Last post I mentioned my toenail removal and how it was effecting my spasms. Luckily it has healed up very well and the nail is slowly growing back. However my spasms are not any better. I’ve overcome one issue and moved onto the next. Currently I’m dealing with a condition called heterotopic ossification. Because my brain can’t communicate with my body below my level of injury it can no longer coordinate complex cellular processes. One particularly important process is the control of bone growth throughout my body. For some reason in spinal cord injuries the hip bones in particular are subject to uncontrolled bone growth. So right now the soft tissue around my right hip and femur is slowly turning into bone. The biggest longterm problem associated with the condition is a possible loss in range of motion in the affected region. So I’m keeping after stretching and standing to make sure I stay loose. I’m also on a medication to help slow or stop the growth. Once the bone has matured a decision will be made as to whether or not I’ll need surgery to remove the bone. Until then I’m just keeping on.

On a more positive note: I recently acquired my power chair, and this isn’t your average power chair. After jumping through a number of hoops and playing the insurance game we managed to get the F5 VS standing chair. This thing has a seat elevator up to 20 inches and can stand me straight up; returning me to my glorious height, plus some. Between that and my manual chair I’m fully prepared to take on whatever situation may arise once I return to school. The next step in the process is now getting a vehicle modified so I can get back on the road. When it comes to driving now it’s a relatively simple adaptation. The gas and brake are attached to an ingenious yet simple device that allows me to use my left hand to control both. Pull for gas, push for brake. And the peddles themselves remain fully intact so the whole car can still be driven just like normal.

Besides that stuff I’m getting much stronger and doing so much more on my own. I’ll go into greater detail as to what ‘more’ entails in the one year post-injury update.

Happy Friday.

Big Update

It’s been a while since I’ve written any sort of progress report and I have so much flying around my mind that I’ve been meaning to get out. So here goes nothing.
 
I’ll start with a straight progress update. To give you a frame of reference for those who don’t remember or may not have fully understood; my injury was originally classified as C6 complete. That means I damaged my spinal cord at the 6th vertebrae down on my neck and no nerve signals are able to pass that point. My muscle function stopped at wrist extension or the ability to bring the back of my hand up towards my bicep. If that’s not enough, take a look at this dermatome distribution chart (http://tlccrx.com/wp-content/uploads/2013/11/Dermatome-Chart.pdf). I originally could only control the muscles within the colored region from C1 to C6. Since then I have progressed from a complete to incomplete status and now signals are making it past my injury. Along with this I have gained a considerable amount of muscle function back. On my left side I have progressed to the functionality of a T1 injury (check the chart) and can now control my tricep, pectoral muscle, and a small amount of my hand. I only have minor finger extension in my hand and still rely on the passive grip from my wrist extension called tenodesis (https://en.wikipedia.org/wiki/Tenodesis_grasp). On my right side I have progressed to a C7 functionality and have regained a considerable amount of tricep muscle. My right chest muscle is slowly coming back as well. I also feel that I am gaining back a bit of my core and back muscles that are essential to keeping my balance and sitting upright. There is no order to what muscles I regain and this is just the beginning of my progress. I feel I’ll make huge gains in due time. I am learning that much of the muscles that I have lost that I am slowly gaining back that previously acted involuntarily I now have to think about to use. You all sit upright and hopefully maintain a good posture due to your back and core muscles. But just like breathing you only think about voluntarily activating these muscles a few times a day. For me I now have to focus directly on my back and core muscles in order to effectively make use of them. Hopefully much of it will become passive again in the future but this is what I’m dealing with now.
 
From here we can now talk about the rest of my body that is supposedly “paralyzed.” I’m going to say this now and probably again at the end, anything I say about my injury and the progress and changes I’m experiencing are unique to me and in no way represent any other spinal cord injury. So, although about 80% of my body is “paralyzed,” what it does and how it feels is in no way correctly represented by the definition of paralysis. Starting with sensation, I can still ‘feel’ many parts of my body including my lower back, a few spots along my thighs, my ankles, toes, and the bottoms of my feet. I can only relate the type of sensation I feel in a way you might understand by comparing it to the fuzz you feel when touching a limb that has fallen asleep. However it fluctuates in intensity and location but I think my total sensation is slowly increasing. As for my muscle function, all of the muscles that I don’t have direct control of are still firing. I deal with a heavy amount of muscle tone which is a variant of uncontrollable muscle spasms but instead of spastic shaking my muscles contract to full strength. For example, when I lay down my quads and calf muscles all contract to lock my leg hard straight and my torso contracts tensing my entire back and abs. Once laying for a bit the muscles will relax but are at the ready to contract just as hard again if there is even the slightest movement or sensation on my body even down to the light touch of a blanket falling over my legs. When sitting my muscles continue to contract to the slightest movement but my quads instead pull my legs in under my chair and my back and core muscles contract to become rigid and prevent me from leaning over. All of this continued uncontrollable muscle function comes with its own set of pros and cons.
 
The positives include prevention of muscle atrophy as they are all still in use and the ability for me to still utilize my muscles in an indirect way. For starters when I’m sitting in my chair the contraction in my back and chest keep me sitting upright and prevent me from falling over. They do eventually relax so I can lean down to reach the floor when needed but having the rigidity helps a lot with balance and keeping me up right. When I’m lying in bed I’m able to use the core contractions by pulling up with my biceps under my hips which raises my chest slightly, thus engaging the core contraction and sitting me up in bed. This has made getting up from a laying position 100 times easier as before it involved a lot rolling around, hooking and pulling with my wrist and bicep on my legs and pushing off of the bed with my arm and shoulder muscles.
 
The negatives associated with the muscle tone are very rarely seen by other people until they directly help me move my body. When I attempt to move my legs around in any situation, whether in bed to move around, reposition to transfer or even move them slightly on my foot plate the muscles in my legs contract and prohibit me from doing so. At some points it’s as if my legs each weigh 100 lbs. On top of that the constant contractions cause my tendons to become very tight and although I stretch every day I’m only maintaining the slight amount of flexibility I have. I take muscle relaxing medication to help combat some of the tone but it’s a tough balance between not becoming too drowsy from the meds and keeping my tone at useful but not detrimental level. As I said in the beginning I’m speaking only for myself and what anybody else with a spinal cord injury has to deal with varies substantially from my situation.
 
Now onto the not so cool stuff. I had a pretty serious ingrown toenail the other week. I say had because now I don’t have a nail at all. Yeah I was that bad. And to make matters worse it’s infected. Not only can I feel the pain of the infection through very uncomfortable nerve pain but any pain below my level of injury sends my muscle tone through the roof. So the fine balance I just talked about is out the window. My legs will not give me a break. The icing on the cake is that wounds below my level of injury heal exceptionally slow due to the lack of blood flow. Something like five days for every one day a normally functioning body heals. So it’ll be a while.
 
Besides that though things are going great. As long as I keep moving in the right direction I can afford a few detours. Oh and one last thing. Ideas, so many ideas. By that I mean inventions I guess. I’m constantly thinking of devices to make that either help with an immediate task or may ultimately help give me more mobility. I’m putting some more simple ones into physical form here and there and the more complex ones I’ll get around to once I’m back at WPI. I’m going to need all the help I can get for a few of the more farfetched ones. But that’s what makes it fun. And now I’m my own test subject so I can see lots of electrode placement in my future.
 
Anyways, remember to keep improving yourself. If you have the ability to make some part of you better or do more with your day, cherish that. Use it as motivation and know you’re never as good as you can be at anything.

Long time coming

Speaking in the third person, this post is by Jared. I just haven’t created my own account for the blog.

 

Okay so I tried to write a post a few times now but I just don’t like talking about myself. I figured a lot of you guys might be wondering what I’ve been up to since I haven’t posted very much at all on the blog nor the Grier strong page. I’m still doing my therapy three times a week and I’m also taking two online courses through Southern New Hampshire University. I decided to take cognitive psychology and differential equations. The math is for my major and the psych course… Well I guess that’s just a good elective and I find it pretty interesting.

Apart from all that I’m pretty much just staying busy where I can as well as staying as warm as I can. Even though winter hasn’t really come yet I still have a serious struggle when it comes to staying warm. As with any able-bodied person your body acts as a furnace keeping you warm as your blood rushes through you but unfortunately for me my furnace is off and the only thing still lit is the pilot light (my heart). So there’s lots of layers and fireplace time currently and in the near future.

The last research checkup I had went well and I’m continuing to slowly progress with sensory and motor function. The progress right now is very minimal but anything is huge. Basically I can feel slightly more on my hands and I seem to be gaining back a bit more of my core, which will make balance so much easier.

Slowly I’m falling into a new routine in life and coming to terms with my new normal. Unfortunately there are still so many unknowns right now and what I do today will most likely be very different from what I do in a years time. It’s a tough balance between finding a routine that works for me now and not wanting to accept that it will be my routine forever. I know for a fact that many things I have to do today I won’t have to do in the future. At the same time much will remain so it’s those things that I have to focus my energy on.

A good analogy might be if you had an old car that you had to keep spending money to repair while also trying to save money for a new car. If you don’t fix the old car you won’t be able to drive but if you keep putting money into that car you’ll never be able to afford a new one. You have to find a good balance that allows you to keep living how you are but also have hope that it won’t be like this forever, and one day you will have the new car. Or I guess you could just lease it I guess…

Overall though, I guess you could say I’m content. Whether that’s a good thing or a bad thing, I don’t even know. But in the grand scheme of things, I’m really doing pretty well compared to the better half of the people in this world. Just appreciate what you have and remember that there’s somebody else out there that would kill to have what you have. The ever-increasing realization of the fleeting of time makes me want to grab the head of whomever I talk to and emphasize how important it is to take advantage of each and every opportunity and make the most of each day because within an instant it can all change and so much of what you take for granted will be lost just like.

Happy holidays folks.

Bladder stone removed today

Hi all, it has been a few weeks since I have had a chance to put out a post. Over the past few weeks we have been dealing with the ongoing process of getting into our new routine. Visiting with all of our new doctors here in Ct. We have been very fortunate to have connected with a great group of doctors that are energized to help Jared and be part of his ongoing care.

Over the past few weeks Jared has had an ever increasing amount of muscle spasms or toning as one of his PT therapists called it. As it turns he had a stone in his bladder that looked to be about 1.5cm from the ultrasound. This stone in anyone of us would have been very uncomfortable to say the least. For Jared as he does not have the normal sensations that we all have it became a source of disroflexia. This in turn increased the frequency and severity of his UTI’s as well. So he has been dealing with a number of issues that are all related to this stone.

Jared was scheduled for surgery on Thursday to remove the stone but as his UTI was so severe he had to go into the ER and get a few days of IV antibiotics before the would operate. So today the infection was much better and they performed the procedure to remove the stone. When they actually went in to break up the stone and remove it they found that it wasn’t a stone at all. What happened was during his earlier stay in the hospital he had a foley catheter installed. The small bulb that is inflated at the end of the foley tube to keep it in his bladder ended up habing crystals form around the outside of it making a small cast of crystals. Once the bulb was deflated and removed the small cast remained behind which looked like a stone in the ultrasound. Fortunately when the doctors went to remove the stone they found that it was just a cast. This is much easier to break up and remove. Also it means that Jared is not making stones in his bladder and he should not have to worry about any coming back in the future.

We are just now getting released and should be back home in a few hours.

Laser breaking up the crystals
Laser breaking up the crystals
Crystals broken up and ready to be removed.
Crystals broken up and ready to be removed.
Great group that helped and performed his procedure today.
Great group that helped and performed his procedure today.