2/16

Ever since we left the ER almost two weeks ago, Dad has improved by leaps and bounds.  He's doing phenomenal.  The neck pain is more manageable.  His cognition is great.  He's basically back to his old self again.  The only thing he really has to cope with at all is intermittent short term memory difficulty.  But it's really small inconsequential stuff like "Did I already call to make a haircut appointment or do I need to do that still?" or "Where did I put the keys to my camping trailer?".  Heck, I have those difficulties on a daily basis without a brain injury!  Half the time I find myself standing in the middle of the grocery store with no clue what I came there for.  Like I mentioned long ago, I think the only thing this encephalitis did is knock Mr. Perfect Memory down a peg to be down here with us common folk.  :)

As if my singing his praises isn't enough, he had two awesome follow-up appointments this week, with Neurology and Infectious Disease.  There were a lot of words and phrases thrown around by the doctors, such as "outstanding", "unbelievable", "one of the fastest recoveries on record", "most recovered case we've ever seen".  The Infectious Disease doctor today said that in the past 5 years he's seen 13 cases of the type of encephalitis my dad has.  Of those 13, he said my dad is the only one who has basically come back to baseline.  Most of the rest have marked neurological defects.  And even the ones doing fairly well, it took them over 6 months to get there.  We're only 2 1/2 months out.  We know there will always be good days and bad days along the way in this healing process, but it's great to know that his recovery is taking a truly amazing road.

His doctors have given him full reign to do everything he used to do, no limitations.  We're excited that he can really get back to living life again.  However, I said that I forbid him from leaving town (and being out of my immediate sight) until he's at least 6 months out.  I know, overprotective perhaps.  But I told him I'm not taking any chances, he can consider himself grounded until May!

Throughout his illness, I've read a million studies and articles on prognosis.  The statistics that most stick out in my mind is that encephalitis, even treated with Acyclovir, is fatal 20% of the time.  57% of people have serious long-term neurological damage.  20% of people recover with minor to moderate damage.  Only 2.5% regain normal brain function.  My dad is that 2.5%.  We are blessed.  

2/12

It has been a great past couple of days!

Dad's neck pain has been totally manageable.  I don't know if it's a result of the increased dose of Neurontin or just the course of the healing process, but either way we'll take it.  With this improvement in pain he's seemed like his old self again.

On Sunday we went out for lunch to celebrate his graduation from PT/speech therapy and his overall progress:

2/9

Dad graduated from speech therapy yesterday!

Evan (his speech therapist) gave him the same test that he had on two previous occasions:  on first admission to Osteo and then when he first started outpatient therapy.  The test looks at areas such as memory, comprehension, problem solving, executive higher level functioning, attention to detail, spatial relations.   My dad doesn't remember taking the test the first two times, so it's still a good measure to see how he scored this time and especially useful to compare this test to the first two.  It's an unbiased and quantifiable way to clearly demonstrate how he has improved.

The first time he took the test (on admission to inpatient rehab), the result was moderate deficit in memory, attention to detail, and problem solving.

The second time he took the test (on starting outpatient speech therapy), the result was minimal to moderate deficit in memory and minimal deficit in attention to detail.

This time he took the test, there were NO deficits.  He scored completely normally.  Woohoo!

Of course, he still battles some memory problems at home, but nothing compared to how it was.  And it's fantastic that he can complete any cognitive challenge without difficulty.  Definitely cause for celebration.

2/6

Well, we went to the ER yesterday.

The neck rigidity and pain were markedly worse yesterday, so it was definitely prudent to get the MRI ASAP to ensure that these symptoms didn't indicate anything new going on with his disease process.  Thankfully that doesn't appear to be the case.

We spent 11 hours in the ER to get that information, it was often agonizing and excruciating for Dad, but well worth it in the end.  Don't get me wrong, we got excellent care by my co-workers, it was just a very long day.  It started ok, but the MRI experience pretty much blew all of that to smithereens.  I completely underestimated how hard it would be for him to have the MRI.  I think if he were to get on here and share his thoughts on the MRI, this blog would no longer be PG-friendly!  There probably aren't enough 4-letter words and expletives to describe his feelings about the MRI.  But don't worry, if you talk to him in person about it, I have no doubt he won't hesitate to tell you!

I'm sort of an idiot for not considering how awful it would be.  You take someone healing from a brain injury with debilitatingly excruciating neck pain, put a cage on their head (literally), force them to lay locked-up on a rigid board in an enclosed tube, blare shrieking noises from the tube incessantly at them, then tell them not to move even one inch for 45-60 minutes.  Yeah it's an understatement to say that he didn't like it.  He actually did ok for the first 20 minutes, then a wave of intense neck pain hit and the inability to move in there was awful.  They let him out, I came down and convinced him that he could endure the rest of the test.  I stayed in the MRI room and held his hand for the rest of the scan, giving words of encouragement, and promises of bribery.  We absolutely needed those test results, but I definitely owe him several rounds of homemade biscuits for that torture.

The MRI showed no new area of bleeding or injury, which is great.  It basically looks mostly unchanged from 6 weeks ago and that is normal.  I've learned from Cathy, Neurologist Extraordinaire (who I was texting frantically from the ER all night, I definitely owe her biscuits too), that the MRI isn't really expected to improve until at least 3-6 months out.  It's hard to say what caused his huge spike in pain and stiffness, other than people with encephalitis are extremely sensitive to overdoing it.  They can decompensate quickly in the pain department from pushing themselves too much, even sleeping in a bad position.  But not doing enough leads to pain and stiffness too so it's a sticky wicket.

Today was a much better day.  The pain/stiffness were bad this morning but lessened as the day went on.  He was active in the morning, rode the exercise bike in the basement and took a long walk.  He and Meme went out to eat for lunch then came over to our house for the afternoon and for dinner.  He and I sat on the back porch, drinking coffee, and watching the kids play in the giant dirt pile in the back yard.  It was the nicest weather we've had in awhile, so it was very much welcome.  It was the kind of day where you can sit outside in a sweatshirt and appreciate the chill in the air but still feel totally comfortable.  Definitely a much better day.

2/04

The Good:

Dad officially graduated from PT!  His physical therapist tested him on a variety of different physical exercises and he passed with flying colors.  His balance, endurance, coordination, and strength have all markedly improved.  So now he'll continue his physical exercises independently at Gold's Gym.  He still has a ways to go before he's able to do the same type of workouts he did before becoming ill, but I think whenever his neck pain finally resolves that he'll be able to do much more.

His last Speech Therapy session may be this week as well.  Evan (his speech therapist) said that he's actually been having a hard time coming up with enough challenging material lately.  Although we did have a disagreement with Evan about one of the projects he gave my Dad that he gave him lower marks on.  We both had to school Evan on how Italians have parties.  The assignment was to plan a fictional pizza party for 12 people using a menu that Evan provided.  He had to also account for two vegetarians and two children as well, pick enough items from the menu to feed everyone, then calculate the total (with tax and tip) correctly without a calculator.  So my dad picked out a total of 12 pizzas, 12 salads, a bunch of desserts, and drinks.  He added all of the numbers perfectly and aced it in my opinion.  However Evan was critical of the fact that he ordered too much food and marked him down a bit, saying "well you would never order that much food for just 12 people, you could have just ordered enough pizzas for everyone to have 2 slices and that would be sufficient".  My dad and I both promptly told Evan he's crazy.  I said "Listen, we're Italian, that's how we roll".  And proceeded to explain that when you come to a party with Italians, you always have too much food, it's just what we do.  You have to have enough to feed everyone, have enough to snack on later, AND have enough to send home with people for leftovers.

The other good thing in this update is that Dad finally got to drive his truck again.  He did great!  We drove around Middletown, out to TMI and up and down 441 and he had no problems whatsoever.  So from now on I'll have him do the driving whenever I pick him up.  We'll do that for a few weeks and then by the end of the month I anticipate he'll have his truck back.  I know he'll be relieved to have that independence.


The Not-As-Good:

For the past few days my dad's neck pain and stiffness have been much worse than they have been for the past couple weeks.  It's been downright excruciating for him at night and he has hardly been able to sleep at all.  It's been keeping him up and he's so tired from it.  In addition, he had one rough episode of "visual flashes" the other night too.  Basically when the brain is healing from encephalitis, it can sometimes fire random electric signals, which can manifest in a variety of ways, in his case seeing a succession of random images flashing before him.  It's very common during the first year and usually just happens at night.  But it can be extremely disconcerting and a bit scary while you wait for it to pass, especially if you don't know it's normal. Thankfully he's only had this a couple of times over the past two months, some people get it constantly and much worse. I'm glad that's not something he's had to deal with much.

However, the increased pain lately combined with that intense episode has me watchful. His mentation and cognition are fantastic and I feel like he's doing great, but I also feel like we can't be too cautious.  I am overly protective and alert for any tiny remote possibility of a return or increase of his original illness, so we're going to schedule a repeat MRI this week.  He was due to have one anyway at his neurology follow-up in April.  I spoke to his neurologist today and she agreed it was prudent to do it now just to make sure the increased pain isn't a sign of anything else and to check how the healing process is coming along.  In addition, we're going to increase his bedtime dose of Neurontin and try some Tylenol PM to see if it will allow him to sleep better at night. With any luck he'll be able to sleep through some of the pain. It's amazing how many aspects of life that pain can affect. I swear if we could just get rid of this darn neck pain, that would fix just about all of his problems!