Some SCI Stats

I found a website today that provided all sorts of interesting stats about spinal cord injury, and I thought I'd share some of them...

Most Common Causes of SCI:
Automobile Accidents: 34%
Falls: 19%
Gunshot Wounds: 17%
Diving: 7%
Motorcycle Accidents: 6%
Hit by a Falling Object: 3%
Medical/Surgical Complications: 2%
Bicycle Mishaps: 1% (!)
Other: 4%

So, yeah...Jason's type of injury is on the rare side.

• Average Age at time of Accident: 26
• Men make up 82% of SCI
• 39.8% of those with a SCI had not finished high school at the time of their accident.  Only 1.3% of those injured have a Master's Degree (again, Jason is in the extreme minority here)
• Most SCIs occur in July (like J) and on a Saturday (ditto)
• Cervical injuries account for 50.7% of cases, whereas thoracic injuries account for 35.1%

We had a lovely Christmas, and I hope that all of you did as well.  Savannah made out like a bandit :)  She's only moderately spoiled...

Jason has a big day tomorrow: driving lessons!  His big Christmas gift from me was driving lessons with hand controls, so he goes tomorrow afternoon for the first one.  He's really looking forward to getting out of the passenger side of the car for a bit!

I'll be posting Jason's six month update in another week or so (I'll have to do it a few days early since I'll be in Scotland on the actual 6 month anniversary).  We've got some exciting news, so try to check back :)

Love you all,

Ashley

Our Christmas Letter

I wanted to share our Christmas letter with all of you, since I didn't have everyone's physical mailing address.   I hope you are all enjoying the holiday season-we certainly are!  Jason's mom and brother are with us now, and his stepfather will arrive tomorrow.  We have a full slate of activities planned for the next few days :)

Happy Holidays!

I feel as if I begin all of our Christmas letters with something about how wonderful the previous year has been.  In many ways, this is especially true of 2011.  More than any other year in our lives, 2011 has shown us how very loved and supported we are.  It has also been the year that has most challenged us- individually, as a couple, and as a family.  

For those of you who don’t yet know, Jason was in a bicycling accident in Lake Tahoe on July 9.  In addition to breaking six ribs, he fractured three vertebrae in his neck and back, leaving him paralyzed from the chest down.  After one week in the ICU in Reno, NV, and four weeks at a rehabilitation center in San Jose, CA, Jason returned to our home to begin the next phase of his recovery process.  As terrible as his accident was, everything since the moment he went over his handlebars has really gone our way.  He’s made remarkable progress and has handled this whole situation with grace and courage.  While he’s not yet walking, we are anticipating that he will begin therapy with leg braces in the new year.  If you’d like to keep track of his progress, please visit the blog I began while he was in the hospital:  jasonsroadtorecovery.blogspot.com

We travelled a lot prior to Jason’s accident.  We rung in the New Year in London, spent a weekend in Paris, visited family on the East coast for two weeks in May, and visited Sonoma, Mendocino, and, finally, Lake Tahoe, for various bike events in the early summer.  Since the accident, we’ve stuck close to home, though Jason is beginning to prepare for a trip to London next April for a work conference.  Thankfully, all of our family has come to us.  We had family with us for the first three months after Jason’s accident, which gave us a lot of time to adjust to our new lives.

Our little girl has grown by leaps and bounds this year.  Savannah began walking in March, not long after her first birthday.  She’s now running and climbing!  She cut her first tooth in February, and now seems to have a mouth full of teeth (I think last count put her at 14).  She has a huge vocabulary, and is particularly fond of making animal noises.  Savannah loves tea parties, her enormous book collection, music (especially drums), and art.  She began going to Google’s preschool in January (two days a week), and will continue that schedule through the fall, at which point she’ll move up to full-time, and I’ll return to teaching.  

Our puppy, Sonja, has had a great year, and has shown a tremendous amount of patience with Savannah.  Savannah thinks she and Sonja are best friends, but I’m not sure that Sonja always agrees.  Savannah spends large portions of her day trailing after Sonja, trying to hug her, kiss her, dress her up, or just imitate her.  It’s really sweet.

My dissertation prospectus, on theatricality and Calvinism in the 18th century, was accepted in May, and I’ve been lucky to be free of teaching responsibilities this academic year, so that I can get some research done.  This flexibility and freedom in my schedule also allowed me to be with Jason in the hospital and at almost all of his therapy appointments.  I’m headed to the archives and libraries in Edinburgh for a few weeks in January, and while I’m definitely not looking forward to leaving Jason and Savannah behind in California, it will be good to get more work done on my dissertation.

We hope that this card finds all of you happy, healthy, and enjoying the holidays with those you love.


All of our love,

Ashley, Jason, Savannah, and Sonja

Flexibility

If I had to give one piece of advice to new SCI-ers, it would be to remain flexible in all situations.  You have to be able to roll with the punches and deal with the unexpected pretty much on a daily basis, so it doesn't do you much good to get hung up on the little things that (inevitably) go wrong.  Oh, but this is easier said that done some days....like today.

I had today all planned for us.  Jason took a vacation day from work and, after two (supposedly) quick appointments in San Jose this morning, we were going to head to the Monterey Bay Aquarium for the afternoon.  The morning went well.  We got out the door by 9:15...before that we'd gotten everyone showered and dressed, taken Sonja to the kennel (we were planning on getting back late, so thought she'd enjoy a day with other pups out in the country), and I'd even been able to make beds and fold a load of laundry.  Excellent.  Jason's first appointment was with Dr. Shem, his Physical Medicine and Rehabilitation doctor.  He was her only appointment this morning, so we expected things to go pretty quickly, as it was just a routine check-up.  She ran late.  It wasn't such a big deal, though, as we still had another afternoon appointment.  The meeting with Dr. Shem went really well.  She ok'd the plan for braces in the new year, and was really excited by all the progress Jason has made.  We also talked with her about having a new ASIA exam done on Jason at his next visit in late January.  The ASIA exam determines complete vs. incomplete injury.  She also answered all of our questions on clinical trials and things like that.  It was a very productive meeting.

After the appointment with Dr. Shem, we went to lunch and then headed over to what should have been a quick appointment with Jason's wheelchair vendor.  He's been having some problems lately with the height of his seatback, so we were hoping to get that resolved.  I expected this to last about 30 minutes max....it took closer to 1.5 hours...ugh.  By the time we finished there, there wasn't much point in driving to Monterey.  Savannah would have only had around an hour in the aquarium, so we came back home.  I was really bummed by this...I'm actually not sure why it's bothered me so much.  In the grand scheme of things that have occurred in the last 5 months, missing out on the aquarium is not that big of a deal.  This would have been, though, our first big family outing since the accident (we haven't really had a FULL day out of the house since Jason's accident), so I was excited about that.  I think I'm also irritated by the fact that these medical appointments almost always end up taking significantly longer than they should....it gets old.

Anyways, we're going to try the aquarium again on Sunday.  Hopefully, it won't be crazy busy (which is why I wanted to go on a Wednesday).  Savannah will love it, I think.  Sonja, unfortunately, will be relegated to her crate for the day.

Hope you're all doing great :)

Love you all,

Ashley

Five Months

Five months down and, I must say, life is beginning to feel normal again.  Jason continues to amaze me with his persistence and his progress.  For those of you keeping track at home, here’s where we’re at...

Mobility:  There’s very little that prevents him from getting around now.  He can manage curbs, stairs (if the situation really demanded it.  In wheelchair-friendly California, this is not much of an issue), transfers (the transfer board is rarely seen these days), and general maneuvering.  He’s begun taking the shuttle recently, and will wheel himself down to the BART every morning for that.  He’s also beginning to get a bit more adventurous with work-venturing further afield for meals, interviews, and other obligations.  

Pain:  N/A

Exercise and Therapy:  5 hours per week at SCI-FIT.  A bit more than that through December, actually, to make up the time he’ll lose when they’re closed for Christmas.  He also wheels to/from the shuttle stop and does stretching exercises at home every day.

Daily Life Activities:  He can now watch Savannah if I need to run errands (it’s soooo nice being able to run to the grocery store without a grabby toddler on my hands!), take Sonja out on a (short) walk on his own, do laundry, clean the kitchen, clean up the bathroom, etc, etc.  There’s not much he can’t do.  If I had to note the biggest change over the last few weeks and months in this area, it would be that he’s making a really concerted effort to be more active as a husband and father.  When he was first injured, one of the biggest questions we had was how parenting would change with Jason in a wheelchair.  I think he’s realized now that the wheelchair places only (relatively) minor limitations on him as a parent.  As he’s gotten stronger, he’s begun doing more with Savannah.  Now, he can get out of his chair onto the floor to play with her puzzles, read books, or whatever else she’d like to do.  He can interact with her a lot more now.

Sensation/Motor Control:  I don’t know that there’s a lot that’s “new” this month, but what we have seen is that the sensation and control that Jason’s regained below the level of injury has gotten stronger and more consistent, which is very good.  He’s also feeling a lot of “deep touch” in his legs.  e.g. He can feel the tightness of socks on his feet, that his hip muscles are tight, and so on.

Biggest Issue at the Moment: His seat back on the wheelchair.  He was fitted for his wheelchair only a few weeks after his accident, so they ordered him a chair back that’s relatively high (to give more stability, which most people with a T4 injury level need).  Now that he’s gotten so much back, the seat back is getting in the way and needs to be substantially lower.  We’re meeting with the wheelchair vendor next week and, hopefully, we can find a way of switching out the seat backs that does not involve completely buying a new one.  

Biggest Success: Graduating PT, watching Savannah solo, walking Sonja.

In the next month, we hope to.....  Enjoy Christmas with our family, travel a bit (we’re hoping to take Savannah to Monterey next week), and keep moving forward.

Coming up on the six month mark is a pretty big deal, as most people we’ve spoken to made their biggest advances around months six and seven.  Jason and I have talked a lot about this, and we’re a bit torn about how to view this next period.  Obviously, Jason will continue to work as hard as he can towards a “full” recovery, but, with so much already regained, can we realistically expect much more?  I think this is the worse part of SCI-the not knowing.  Not knowing how much he’ll recover. Not knowing if there will be a cure for this (actually, I think the science for a cure is there, but many of the clinical trials have encountered road blocks due to funding being cut or because people get anxious about stem cell research). The uncertainty is tough.  I try to not focus on this too much, because, at this point, our worst case scenario is that Jason remains where he is, which is great, really.  It’d still be nice to have a crystal ball on occasion :)

I hope you are all doing well, and enjoying the holiday season!

Love you all,

Ashley

The Great Car Debate

We've been planning to buy a new car in the spring for some time (pre-accident actually).  Our TSX, which we really do love, has gotten too small for our needs.  When Jason was first injured, I was worried that I would have to go out and buy one of those big, wheelchair-accessible vans before he left the hospital.  Thankfully, one of the nurses at the rehab center set me straight and told me that, with the level of injury Jason has, there was no reason why he couldn't get in and out of a sedan on his own.  It's been nice to have time over the last few months to think through our car options, and decide what makes the most sense for us, given Jason's level of injury.  Problem is, we can't really decide what is the best option.  I think we've more or less decided against going the fully- accessible route.  Whatever car we get will need hand controls installed, so that Jason can drive (I think he's really looking forward to being able to do this), but there's no real need for full ramps and things of that nature.  We've joked in the past that we'd never get a mini-van, but the main reason for that is Jason wouldn't be able to get in and out of a van unless it had the ramps.  Right now, we're thinking about a Subaru Outback, maybe a Mazda of some sort, and Jason's recently begun looking at a 4-door Mini Cooper (Actually quite big, despite its name).  We'll probably look at some other SUVs...though those tend to be high off the ground.  Really, we just need storage room and something lower to the ground.  Beyond that, I think we're open to anything.  Let me know if any of you have ideas for things we should look into.

In other transportation news, Jason began taking the shuttle to work today.  I think it went reasonably well this morning, and hopefully will be okay tonight.  As with any change, it'll probably take a little bit of time to get accustomed to the new normal.

I hope you all are well.  I'll post again in a few days...we're coming up on 5 months since the accident, so it's time for another "official" update.

Love you all,
Ashley