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Root of the Problem

Hello blogging world, Anthony Macchio-Young here. I am going to be responsible for updating my blog from this post on, give my Pops a break. Figured I’d start with the root of the story with the bicycle accident and how I got my TBI (Traumatic Brain Injury).

It all started 6 days after moving to San Mateo to find a Graphic Design job. One of my professors, Jensen Hendriks, had put me in contact with a friend of his who builds apps for iPhones and just moved to San Francisco himself. On the sixth day my bicycle, that I shipped from Florida, had come in the mail the morning of February 1st, 2013, so I thought I’d take the CalTrain up to San Francisco and pedal to the networking party my new connection was having.

Tag  they required I used for my bike on the CalTrain.

Tag they required I used for my bike on the CalTrain.

I left with my bike on the CalTrain in San Mateo at around 6pm. Arrived in San Francisco around 6:45pm and then pedaled myself to one of my true passions in life…craft beer, 21st Amendment brewery and then went to City Beer Store for another craft beer. I pedaled away and realized I was headed in the wrong direction, stopped and asked a couple the way to Russian Hill, they told me and I started pedaling in the right direction. I then turned onto a main road and started going downhill. As I traveled downhill I didn’t notice the trolly track because they were foreign to me. My front bicycle tire then gets caught in the track and I flip over head first (had my helmet on thankfully). I stood up immediately and three bicyclist on the sidewalk saw it all go down and said I needed to go to the emergency room and then stopped a taxi van for me. He put my bike in the back, then asked me where I wanted to go, and I said CalTrain. I waited for around 15 minutes for the CalTrain, got me and my bike on, took a few pictures of my head because I knew something was wrong, but TBIs were so foreign to me I thought it was just a concussion, so I thought staying up throughout the night would do well enough.

Picture taken on the CalTrain to check for any visible wounds.

Picture taken on the CalTrain to check for any visible wounds.

We arrived in San Mateo and I got out, walked my dilapidated bike back to my apartment, then realized I had lost my keys somewhere along the way (thankfully), called a few locksmiths with no luck at 11pm on a Friday night, texted my then girlfriend, who was a flight attendant, that I’d need her to stay up with me that night, then took my jacket off and bunched it up like a pillow, and passed out on the apartment’s community porch (last thing I personally remember). My neighbor, whom I never met, found me and dialed 911. The cops came and thought I was beyond drunk because a bottle of beer that I bought at City Beer Store, 3 Fonteinen Oude Geuze, had broken in my book bag. My neighbor then saw me having seizures because she was very familiar with seeing that with her epileptic brother and recommended that they call an ambulance. The medics were then smart enough to take me to Stanford Hospital rather than San Francisco General. Dr. Odette Harris, Stanford’s managing TBI neurosurgeon, performed surgery on my Subdural Hematoma on the left side of my brain and I was in ICU for two weeks and one day and then transferred to Kentfield Acute Rehab in Marin County.

Next post will cover my story with recovery in therapy thus far!

Mult-tasking

Benefit FriendsJust the other day a friend of mine posted a Timehop of her and a few of my other friends at my benefit fundraiser which was two years ago, 4/13/13. I have to say thank you to all the family, friends and businesses who helped contribute and attend the event! You all helped bring me back to the East Coast 10 days afterwards and a plethora of other things. Timehop also reminded me that I need to update my blog…

Therapy, as a whole, is getting trickier and trickier. I’ve moved on from practicing solo task and movements on their own, but I am now learning to multi-task all of the things I’ve learned into one fluid movement.

As far as Occupational Therapy goes I am currently learning to do things such as use my left Hemiplegic hand in everyday tasks while standing. One issue we’ve found is that my posture likes to collapse, but my OT Therapist, Tara Murphy, and her OTA student, Rachel Marshall, found that if we put some weight in a book bag and put it on my back it’ll keep my posture upright. We are hoping to decrease the book bag’s weight  with the goal of getting my back and its muscles more acquainted with staying upright. I have also been working on buttoning buttons since I can now engage my left hand for assistance more than I ever could before, after my tendon release surgery. We initially started with exercise buttons in the gym, but I have now graduated to putting on a button up shirt all by myself. Speaking of dressing myself I have been getting up and out of bed, getting myself to the restroom, doing all of my toiletries and dressing myself in the morning – slowly but surely!

Physical Therapy has had its ups and downs. I’ll start with the downs and end on a good note. I graduated to a single poled Offset Cane and then got demoted due to relying too much on the cane for weight bearing. The original Physical Therapist, Katherine Bennett, I started working with for two hours a session four days a week at Roper St. Francis had her first baby, Luke, a week and a half ago. While this in an AWESOME thing and I can’t wait to meet him, it is a major drag cutting back to a little under half of the amount of time I’ve had devoted to Physical Therapy over the past year.

Me walking 1/4 mile with no assistive device

Me walking 1/4 mile with no assistive device

On to the better side of Physical Therapy, I have an great temporary replacement Physical Therapist, Jamie Hamric, and Katherine’s third year MUSC PT student, Amy Graul, who both have stepped up to the plate! With less PT in the hospital it has driven me to do more exercises at home. Everything from standing with no device, heel/toe lifts and working on my posture. I also managed to walk a full quarter mile with no cane, walker or any assistive device on 3/8/15! Yesterday I went to the Neurologist to get my Baclofen Pump filled and we reduced the amount of medicine it’s releasing as my tone is slightly reducing which is due to massage therapy with Jerry Tiller. Before I go in for my massage I see a Neuro Muscular doctor, Blaine Crevar, and we are working on my eye sight right now. That is improving, so that gives me hope that I’ll be able to drive one day! Both of those forms of therapy were introduced and the first three months paid for by a fellow support group member, Tina Doscher!

When it comes to Speech Therapy I have been working on articulation and letter blends all in one with my Speech Pathologists Jo Ann Fischer, Kelly Moose and their third year Appalachian State ST student Rachel Lyszczyk. We started to add Voice Therapy to the mix, but both my articulation and letter blends heavily decreased while focusing on getting my voice out of my throat. Once again, multi-tasking comes into play. Thankfully though I recently met a MUSC Speech Therapist who specializes in Voice Therapy while visiting a ENT for a Laryngoscopy and she did a little trial run to see how her method might work for me. It was definitely beneficial! I am planning on taking a break from ST at East Cooper Hospital and seeing her for as long as she deems necessary. On a side note, I am speaking to a MUSC 2nd year Physical Therapy students’ Neuro class later this month. I really enjoy spreading the word about TBI prevention and recovery methods and will also be speaking at Shepherd Center’s middle school talks in Atlanta on the way to Shepherd’s Adventure Skills Workshop camp in Alabama.

Speaking of Adventure Skills Workshop (ASW), that is sure to be a blast and you can definitely expect to see an update about how awesome that was!

Sorry for the double post due to GoDaddy technical difficulties.

No Chair

This is where my chair sat all last weekend (1/2/15-1/4/15) while I walked to and from the car and then in and out of multiple destinations with both of my awesome parents spotting me as I walked with no walker. I figured this would be the best way to start out the New Year and a way to start my yearly goal of kicking my chair to the curb,No Chair

Home Again Home Again

One of the first things we did when we returned home to Mt. Pleasant, SC was to interview at-home caregiver businesses to take me to therapy whenever I would have it and provide in-home care. We were not having much success in finding the ideal situation, but, then my buddy Michael Onorato stepped up to the plate. Michael agreed he would take me to therapy everyday and hang out with me in my off time. I was, and still am, very appreciative that my elementary school buddy would do such an awesome thing for me! My parents and I initially went to East Cooper Hospital on September 11, 2014 for a PT, OT and Speech Therapy eval, as recommended by Shepherd Center’s outpatient facility. After my PT and OT appointments we heard the unfortunate news that insurance was no longer going to cover Speech Therapy. After hearing that my heart dropped, but the East Cooper Speech Pathologist, Katie Edwards, was nice enough to give me a free eval while my dad contacted both our insurance case manager at the time and Shepherd’s Pathways. East Cooper’s PT therapist, Suzanne Rodgers, was also nice and told us that she didn’t think that East Cooper rehab would be the best therapy source for my TBI related injuries and specific therapy needs, so she referred us to MUSC and provided us with MUSC’s outpatient therapy’s number.

Walking on the elbow platform walker at MUSC.

Walking on the elbow platform walker at MUSC.

Once we got into therapy at MUSC I was registered with all three disciplines, which were once again covered by insurance, even Speech (thankfully). I started in PT learning how to scoot down a mat, which doubled as my bed, while sitting on the edge and walking on an elbow platform walker, focusing on lifting my left leg fully. In OT I would put a heated pad on my left shoulder’s pectoral muscle to help loosen it up before stretching it and trying to open sealed containers myself. For Speech Therapy I was mostly focusing on the letters my tongue was having troubles producing like ‘K’, ‘G’ and ‘CH’. Unfortunately, MUSC was unable to schedule therapies more than one or two times a week. With my injuries I needed to work as hard and often as I could to achieve the best outcome for my recovery. So one day while I was at MUSC my dad did some investigating and found Roper St. Francis Rehabilitation Hospital who said they could give me all three disciplines three days a week.

Katherine, Michael and me during a PT session

Katherine, Michael and me during a PT session.

I am now attending Roper St. Francis and have been since December 9, 2014 (almost a YEAR!!). My PT is a recent graduate from MUSC, Katherine Bennett, who is all about nuero-cases and has recently gotten her nuero-IFRAH certification. We have been working on everything from isolated muscle strengthening to walking with no support or assistance. I initially started PT for 1 hour 3 days a week, but am now doing 2 hours 4 days a week because Katherine saw my potential and enjoys working with me! My OTs, Tara Murphy and Lindsay Deane, are awesome as well. We are currently focusing on getting more range of motion out of my left arm and I’ve already learned how to put on all of my clothes myself. One of my OTs recommended I should get tendon release surgery on my left finger joints because they want to fist-up and we’ve already tried everything we can do to get them to relax, so I am having surgery to relax my fingers in a few weeks, December 3, 2014 (right fingers crossed). I was released from Speech Therapy at Roper around May 2014 because the therapist ran out of ideas to help me gain anymore speech intelligibility or to help my dysarthria. Since May I started with a few new Speech Pathologists at East Cooper Hospital: JoAnn Fischer, who previously worked with TBI cases in Baltimore, at the Kennedy Krieger Institute; Katie Edwards, the one who had been nice enough upon my return home to give me my initial speech eval; and Kaylen Alford, a recent graduate from App State with her degree in Speech Therapy. I just finished 6 weeks of LSVT (Lee Silverman Voice Therapy) to help get the volume of my voice up to a higher decibel in everyday conversation. And while doing my ‘ahh’s I got them up from 3 seconds while at Shepherd Center all the way up to 19.5 seconds with the help of East Cooper! So that’s my story so far. I will make sure to keep you all posted on big obstacles that I overcome and how my surgery goes on December 3rd!

Stage 2: Inpatient Rehab

First Step

My trunk failing to support me on my attempt to take my first step.

I started remembering what was happening and going on around me 2 weeks after ICU. While at Kentfield Rehab, in Marin County, California, the Speech Pathologist was working very hard on getting me to move my tongue and get some kind of sound out of me, but had no luck. In Physical Therapy I would mostly stand up in the standing frame and 23 minutes was my record while there. I also tried to take a single step but failed miserably, with my trunk collapsing. For Occupational Therapy I would do a board with different sizes and shaped pegs with my right hand because the left side of my body was completely immobile and still does suffer muscle tone. Meanwhile friends and family ran a fund raising party for me back home, Mt. Pleasant, SC, while my mom was staying in California with me and until I got home. After the fund raiser my dad had accumulated $15,000 (Thank you everyone!) and the first thing he did was buy my mom, a traveling nurse, and me first class Delta tickets to Atlanta because they would be bigger seats than coach and way cheaper than renting a private jet. So they took my trache (surgical opening to restore normal breathing) out on April 19, 2013.  Then on April 21, 2013 we then caught a 5am flight to Atlanta to continue inpatient rehab at Shepherd Center.

 

My first full day of therapy at Shepherd Center I said my first word ‘hi’. I then worked on my memory, both long term and short term. Within the first week I was there I did a swallow study to determine how well I was swallowing. I passed my swallow test the first week I was there and was put on a level 1 diet (pureed food) and eventually level 2 (honey thickened liquids and fine foods). Another thing I did in Speech Therapy was practice yelling out ‘ahh’. The typical, healthy, person can yell out ‘ahh’ for 20-25 seconds, but while at Shepherd I could only get mine up to 3.5 seconds tops. In Physical Therapy I was first started on serial casting to get rid of my ballerina feet, then moved on to mat exercises, walking in a platform walker with Bioness (remote estem device), graduated from the hoyer to heavily assisted transfers, and practiced getting into a vehicle for my parents’ sake. Occupational Therapy consisted of arm stretching, getting the first movement out of my left arm, and the FES bike (pedaler for OT and PT that consist of estem).

'Pedaling' my way to the city on the FES arm bike.

‘Pedaling’ my way to the city on the FES arm bike.

While there I got a Baclofen Pump to help reduce tone in my left leg and had surgery in my left ankle/achilles tendon to correct the ballerina feet because the serial casting didn’t help as much as everyone hoped. Graduated 4 months after being at Shepherd and I was then invited to their outpatient facility, Pathways.

Next entry will be about outpatient therapy.