Sunday, May 20, 2012

Driving Again

The hand controls were installed in the car on Friday, and Jason spent part of this afternoon practicing getting in and out of the car.  Disassembling the wheelchair and putting it in the passenger seat is a little tricky right now, but I'm certain that once he figures out where everything should go, he'll be able to get in and out really quickly. When he got frustrated, I reminded him that it use to take me upwards of 10 minutes to break down his chair and put it in the trunk...now it takes less than a minute.  Things do get easier :)

After practicing getting in and out a few times, he drove around our back parking lot a little bit.  He'd like to be able to do more, but his license is suspended at the moment, so we're not going to risk anything more than what he did today.  It was good for him, though, to get a feel for the hand controls and the spinner nob.  He said it was pretty easy to drive, so that's a good thing-no need to return to the mechanic for adjustments.  Now, we just have to wait on the DMV side of things.  We mailed in the doctor's forms this week, so now it is a matter of waiting to get an appointment with the safety office.  We're hoping this will happen before we leave for Baltimore in June.  At this meeting, they'll ask him more questions about his injury, and how it could impact his driving.  At that point, they'll make their recommendation (no license, yes to license, or yes to license assuming you can pass the driving exam).  We're expecting the third outcome.  The good news is that he can take the driving exam here in Fremont, and not at one of the few safety offices, so it should be relatively easy to get that done.  

The leg braces should be ready this week.  We have an appointment at Santa Clara Valley Med on Tuesday, which should be the final fitting.  Keep your fingers crossed that it actually happens :)  These braces have taken far longer than I ever anticipated, so it'd be really weird if things went according to plan this week...

And, finally, a few weeks ago, I complained that the representation of SCI on TV (and Downton Abbey in particular) was not so great.  Well, I was wrong.  Season two of the US version of "The Killing" features a plot involving SCI that is really good.  It is the best portrayal of a newly injured person that I've seen (the character is a relatively low level paraplegic...pretty similar to Jason).  It's worth pointing out, though, that the character is VERY newly injured, so a lot of the complications he's confronting on the show do go away with time.

Hope everyone is doing well!

Lots of love,

Ashley

Saturday, May 12, 2012

Advocating for a Cure

One of the questions we got asked a lot when Jason was first injured, was whether or not he would ever walk again.  In the early weeks, when we knew nothing of SCI and were buoyed by ridiculous levels of optimism (and, frankly, disbelief that any of this was happening), we would always say, "of course he'll walk again."  Honestly, I couldn't conceive of permanent paralysis, or of a world in which Jason didn't eventually regain the ability to walk.  We've come a long way since then, and now have a much better understanding of SCI and the type of recovery that can be expected.  Of all the people who experience SCI, only 1% experience full, spontaneous recovery.  If Jason were in that 1%, we would know by now.  This isn't to say he hasn't had a somewhat miraculous recovery, because he has...but he is not anywhere close to "full" recovery.  So, our answer has changed to, "Barring significant advances in medicine and science, it is improbable that Jason will walk as he did before this accident."  I think I actually have that little line memorized...Jason might be able to eventually take a few steps with a walker and his braces (which should be ready in another week or so), but it will not be a functional walk.  For most everything, the wheelchair is going to be the most efficient option for him.  This is, of course, barring "significant advances in medicine and science."  Which brings me to the real point of this post...to ask for your help in advocating for a cure for paralysis.  SCI research is a relatively new field.  It wasn't until the late 1980s that doctors even began to try to repair the spinal cord-until then it was assumed that nothing could be done to fix it (not much was known about the cord....there's still a lot that is unknown).  Here's a quick rundown of where the science is:

  • Stem Cells:  Believed by many to be the most promising avenue of SCI research, but has not done too well in the US due to political pressure and backlash against using stem cells in research.  Most of the research is done abroad, with some of the more interesting work being done by Dr. Wise Young in China.  For information on the study that he is currently conducting (and, according to various reports, seeing real progress), go to:  http://www.chinascinet.org/
  • Electric Stimulation: Rob Summers is the poster child for this route to a cure (his story can be found at http://www.dailymail.co.uk/health/article-1388930/Paralysed-crash-victim-Rob-Summers-walk-thanks-Superman-star-Christopher-Reeve.html).  Essentially, this involves implanting an electronic stimulator on the cord, then shocking the cord into action. After the surgery, ROb required extensive PT to make his gains, but oh the gains he has made.  This is a really encouraging study!
  • Exoskeletons:  Exoskeletons are not actually a "cure," but they have the potential to help people with SCIs and other neurological conditions to walk again.  The current models would need to get quite a bit smaller before they could be used on a regular basis, but, again, a promising avenue.
Right now, there is a bill making its way through the legislative process in the CA Assembly (to read more about it, go to http://www.dailykos.com/story/2012/05/11/1090693/--People-must-fight-for-each-other-paralysis-cure-bill-hanging-in-the-balance).  Bill AB 1657 would add $1 to every traffic ticket.  This $1 (all of it) would be directed to spinal cord injury research at the University of California.  The UC has made tremendous strides and advances in SCI Research (and, for the more fiscally conservative, every $1 that CA directs to this research center, the center attracts another $4 in outside investment and research...).  If AB 1657 does not get approved, though, this research could end.  So, I'm asking you (particularly those of you who live in CA) to write an email/letter and let CA lawmakers know that this is an important issue.

Send your emails to:
felipe.fuentes@asm.ca.gov  (Assemblyman Fuentes is Chairman of Appropriations, which is where the bill is now)

Jeff.Barbosa@asm.ca.gov –Legislative Director for Bob Wieckowski, who is sponsoring this bill (and is the assemblyman for our hometown of Fremont)

If you'd rather write a letter, you can mail it to:
Assemblymember Bob Wieckowski, State Capitol, P.O. Box 942849, Sacramento, CA 94249-0020

All you need write is that you support AB 1657, though you are certainly free to say more than that.

Thanks for your help with this!

Ashley

Wednesday, May 9, 2012

10 Months

Today is 10 months post-accident. I almost forgot that, actually, which is why this post will be on the short side.  I think it's actually a really good thing that the 9th of a month came along without this accident being the first thing on my mind.

We're quite busy these days.  If you saw the last post, you'll have seen that J is still participating in the Eksos trial, and that we're busily preparing for our upcoming trip east.  Most travel arrangements have been made, and people have been making contact with us in regards to visits while we're there. We're both a bit nervous about the trip (somehow traveling to London seems a lot easier than traveling cross-country with a 2 year old and the wheelchair!).  It should be a lot of fun, though.

I hope that you are all doing well, and that you're planning wonderful things for the wonderful mommas in your lives.  My mother's day already started...Savannah started the gift giving tonight, which was really quite sweet :)

Love you all,

Ashley

Monday, May 7, 2012

Another go with the Eksos PLUS East Coast Travel Plans!


Last Friday, Jason returned to Santa Clara Valley Med for another go round with the Eksos.  This time (his third) was really nice.  The gym was very quiet, and you could definitely tell that the PTs had gotten a lot more comfortable with helping people with their walking.  After about an hour using the walker, Jason graduated to the arm crutches.  It took a few minutes to get the choreography of it all, but, as you'll be able to see in the video below, he was eventually able to walk really well with them.  He said the arm crutches were definitely more of a workout than the walker.  It was really great seeing him up and moving, and you could definitely tell that he enjoyed himself.  This really is an amazing piece of technology.

video

If you've been keeping up with things on the blog, you already know that we're planning on a rather large east coast trip in June/July.  Well, I'm happy to say that all of our plans have more or less been finalized, and they are as follows:

  • June 16-30: Baltimore, MD (Monday-Friday, Jason will have PT from 2-5pm at Kennedy Krieger)
  • June 30-July 4: Fairfax, VA (Jason will be working July 2 &3)
  • July 4: Jason (and brother Nick) will fly back to San Francisco
  • July 5: Ashley and Savannah take massive train ride to Columbia, SC
  • July 6-8: Ashley and Savannah in Columbia-current plans include a trip to the zoo and the children's museum
  • July 8-12: Ashley and Savannah in Walterboro, SC; hope to have at least one day in Charleston, too
  • July 12: Ashley and Savannah fly back to CA (just in time to celebrate the last birthday of my 20s....)
So, if you are near any of these places, we'd love to see you!  Send me an email (ashley.leyba@gmail.com) and we can arrange something.  Willingness to goto zoos/aquariums/children's museums helps a lot :)

Love you all,

Ashley

Tuesday, May 1, 2012

Braces

Jason got fitted for his leg braces today!  Neither of us really knew what to expect-I guess we thought the orthotics representative would just take some measurements of his legs, but no.  He actually did full plaster casts of both legs.  It was a surprisingly fast process, given all that had to be done.  When they're completed (which should take about 2-3 weeks, and will include another 2 fittings to make sure everything is working right), Jason will go to a few PT sessions to get trained on them.  Then, he'll be able to use them at home and SCI-FIT.  Our initial goal is for Jason to be able to stand when at home.  Hopefully, he'll be able to work up to walking in the halls of our apartment building (where the carpet is really short)....though this will take some time.

It seems like it has taken forever to get to this point with the braces...now, I feel like I can say with some confidence that Jason will have braces by the end of the month!  Here's a timeline of the braces' saga:

  • December 2011:  Doctor agrees to send Jason to PT for braces evaluation once he is 6 months post-injury
  • January 9, 2012: 6 months post accident
  • Early February: Meet with doctor again, get referral
  • Mid-February: PT Evaluation, Jason passes!
  • MId-February-Early April: Doctor signs off on prescription, prescription goes to orthotics company, insurance approves (this was supposed to only take 2 weeks)
  • May 1: Casting
So, yeah, this has taken a while, but patience pays off in the end!

A few other things in the works:
  • Jason will get to use the eLegs again on Friday!
  • We've begun the DMV process....hopefully, Jason will have a driver's license again soon :)
  • Still finalizing our timeline for the east coast trip.  I'll post all the dates soon, so that we can make arrangements to see all our east coast friends and family!
Love you all,

Ashley