Sunday, August 31, 2008

MOVING FORWARD .... one step at a time

I know it's been a while since we've added any news .... that's because, as I mentioned after our trip to Stanford, the goal of having the DBS surgery is TOTALLY dependant on $$$$$$$$$$$ --- lots of it.

The next step, prior to actual surgery, is for Ken to have a 2-day Neuro-psych evaluation @ Stanford. This typically runs about $2-3,000 ...... and if he passes (hahahahaha) he'll be ready for the DBS!!!

We were pretty sure, after our Stanford experience, that our health insurance was basically worthless. In the interim, we've made LOTS of phone calls, talking with lots of different people and prayed for direction. It has been amazing to us the out-pouring of support from everyone we've talked with. I think some of you are even more excited than we are to have Ken be able to get this surgery!

We've had suggestions that run the gamut ---- from Beckie getting a job with the 'State' , cause they have great insurance benefits .... (altho I'm pretty sure Arnold isn't doing any hiring right now!) ..... to getting a divorce (I'M NOT KIDDING!). I pretty much said, "Hey, after 36 years, we've got each other 'trained' ---- we'd have to be crazy to do that!";not to mention we kind of remember saying something about 'in sickness & in health' somewhere along the line. Soooooooo........... after many phone calls and discussions with people in the medical community that we believe God brought across our path, we will be meeting this week with someone who helps with planning for seniors and believe they will be able to give us good direction in the area of coverage for the surgery.

We still anticipate needing to self-pay for a large portion of charges and to that end our church has set up a 'fund' to help us with that. Ken has put together a business-card style handout, so that as we're talking with people about what's happening with us we can just hand them the card, mention the opportunity to donate and all the info they might need is right there close at hand. I've posted pics of the front & back for you to see ---- along with a direct link to our church. If any of you might be interested in having the files in order to print some of your own to hand out, just leave us a message.

When you go to home page - click on the contribute tab; enter your information, and under 'designation' click 'OTHER' and specify: Ken Miller


All gifts are tax-deductible and 100% goes toward our medical expenses.

Sunday, May 18, 2008

We Clicked our Heels 3 Times .......

and wound up back in Yuba City!

What a full week this has been. I just haven't had the mental or physical energy to put my brain to the task of updating you all till now. We got home @ 6pm Friday night - literally collapsed into bed & slept till 7am yesterday morning!

For those of you who have never been to Stanford University -- a little travelogue! Stanford Hospital sits in the middle of the Stanford University Campus, which is miles of beautifully planned trees and open grasslands, with lots of California floral color, much like the rest of beautiful Palo Alto. If you have to be at a hospital for any extended time, this would be the place to have to do it! Lots of fun little shops & restaurants to check out and miles of walking trails.

Thursday was a full day --- at 7:30 AM(!) our good friends, Andrew & Grace showed up to chronicle the beginning of this journey on video.......if things work out, we might be able to do a documentary. They shot some stuff here at the house & then we all hopped in our cars & headed down '80' with a stop at Panera for coffee & bear claws! Of course, Andrew, being the consummate professional he is, had to video that too! I know everybody wondered what was going on & who are these people? (Obviously, not movie stars!!! - they could safely make that assumption, since I wasn't wearing 6 inch heels & Ken didn't have hair plugs! - tho now that I think back on it .... I WAS wearing my movie star sunglasses!!)
After shooting our arrival @ the hospital, Andrew & Grace said goodbye, hopped back in their car and drove home (a 4-5 hr drive). Aren't they 2 of the most amazing friends?

We also took our kids with us....... well, sort of. We know it's hard for them not to be here when all these things are going on - but when it finally comes to surgery, they will be. So - I printed out some recent pics & took them with us --- we showed them all around the hospital -- I think they liked it! Thanks Rachel,Trevor,Jenna,Samuel and Leo for always encouraging us & praying for us - we know you are with us in spirit! You're the best we could ask for.

That first day we had 2 appointments with both Ken's neurosurgeon, Dr. Henderson and Dr. Bronte-Stewart, who at this point is our designated neurologist (both mentioned in the linked article)...... the rest of the day consisted of numerous visits with nursing staff in the movement disorder clinic who took extensive medical history and put Ken thru his 'paces' so they all could see what he's capable of doing physically.... everything from being in a harness & leaning as far in different directions till you feel like you're going to fall to recounting what the source of drinking water he had while growing up! At one point, there were 7 people in the room watching his every move & video-taping! Remember, this is a teaching hospital.

Ken's overall discomfort & shaking were worse for the better part of this day as stress really aggravates his ability to relax and even interact. Ken having to be 'off' meds proved more difficult than we'd expected - and looking back, now with more information, we're pretty sure a lot of the physical symptoms and discomfort he was experiencing while @ Stanford was basically due to withdrawals! Man, I can't imagine going cold-turkey off of other stuff.

If I were to give a movie title to Thursday night it would be : "Little Shop of Horrors"!!
The fact that by bedtime Ken had little to no meds in his system - it was a very tough night -----for both of us. I'm not sure which was worse the restless leg snydrome --- which amounts to jerking movement every 20-40 seconds (!!!!!!!) or the freight-train roaring thru the room (that would actually be Ken's snoring). Needless to say, we didn't start out Friday with much energy.

Friday consisted of a repeat of the testing from the day before -- this time off meds totally. Interestingly enough, some of the test he actually did better on! haha. One very cool thing that happened was that one of the 'fellows' (I think what we'd all call a 'resident'?), Dr. Khemani, specifically sought us out to discuss all the meds Ken is taking and to make a few recommendations. It was a very informative time - with him explaining in depth why/how/when the different meds work. That time with him actually helped us to decide not to fully 'ramp up' the one med he had reduced this past week --- as it seems to be fairly 'addictive' in nature (to the brain) and can cause short-term memory problems after long-term usage...... this is when we realized that possibly much of the trouble Ken experienced during those 2 days was more than likely due to this med!! Yuck.

All told, we were very pleased with our experience at Stanford - really liked everyone who we interacted with and while Ken will still need to do some neuropsychological (that's a big word for "let's see if he's crazy!) testing, without coming right out & saying so, the assumption by everyone there has been that we're moving forward toward DBS surgery!

Now the only REAL hurdle will be figuring out all the financial/insurance ramifications --- as we've been told the surgery itself can run $250,000 with possibly numerous follow-up appts to program the stimulator @ $1,000/pop.................
H-M-M-M-M-M......... big challenge .........BIGGER GOD! Pray for His direction, wise counsel and provision if we are to have this happen.

One very cool thing that happened .......
I like to say that when an individual is faced with challenging life circumstances, it is never just about that person - each person around them will be changed too! Since the beginning of Ken's diagnosis, our 'mantra', so to speak, has been :
Nobody's gettin' out of here alive!
Lord, let us see You in the midst of this and use us to touch others.
As a result - the opportunity to share always seems to rise up, no matter where we go -- and Stanford was no exception.

I was priveleged to connect with a beautiful young woman, Tara, while waiting in the clinic lobby. She had brought her good friend to Stanford - essentially on the spur of the moment - hoping that SOMEONE would help him. There are not many people who would step into a situation like she did & she obviously had extraordinary strength and empathy for her friend who had experienced 18 brain surgeries in a space of 10 years! As she shared their story - I knew that God had placed us there - at that exact moment - just for them. I was able to pray for Tara and her friend - asking for continued strength for both of them - open doors - and ultimate healing........ Man, that's exciting!

Well, we headed home Friday --- exhausted ........ battling stop-n-go traffic on the 205 to Tracy - ugly! Then more stop-n-go on the I-5 due to an accident --- Another appropo movie title for that portion of our trip would probably have been 'Groundhog Day'!!! My least favorite movie of ALL TIME!!! Don't bother to send me emails telling me it's your personal favorite!!!! I've heard them all! Obviously -- we made it home --- thanks in part to a refreshing stop @ Marie Callendars in Stockton for their famous fresh strawberry pie!

I've attached a link below for those of you who might be interested:

This is possibly the best article about DBS I've come across -- and even better, from a patient's perspective. It's a little scary - but hey, you can now 'feel our pain' if you're brave enough!!!

Th-that Th-that Th-that's all folks!

Sunday, May 11, 2008

Stanford ...... here we come

Long story, short --- Ken's tremor has worsened fairly rapidly & has never responded to meds - so at the encouragement of our neurologist & our own desire to try everything promising ----
we're headed to Stanford!!

This is the week we head to Stanford University Hospital, in Palo Alto, for Ken to be assessed for the Deep Brain Stimulation Surgery.
We got a call last Monday from the clinic, just making sure we'd been scheduled for an appointment. That call was a "God" thing -- cause other than the fact we'd been mailed a medical history form to fill out & bring with us, we didn't know ANYTHING about the appointment. We did know it would span 2 days - but that was it.
When the nurse asked me if we had any questions (I'm sure about 1,000 that I don't even know to ask!!!) I told her we were basically in the dark as to what to expect. She was very helpful and in the course of conversation filled us in on the fact that on day #1 'they' would put Ken thru physical assessment trials while ON meds, while day #2 would be comprised of the same series of trials, but this time OFF meds! Yikes! That little scenario could open up the proverbial can of worms!
Some of the meds have to be tapered off and he's already started that process -- so that by Thursday/Friday the 15th/16th he'll be 'ready' for whatever they have to throw at him! Needless to say, we're unsure what this week will hold for us, and we're as prepared as we could possibly be, but anticipate that the trip down, the appt/assessments, trying to relax away from home OFF OF MEDS!!! may be very tiring and possibly disconcerting for both of us. The nurse really encouraged us to stay close by the university, so as to minimize any unnecessary driving in commuter traffic (again while off meds). I'm thinking that's a good idea - so we changed our plans.
We had originally planned on staying with family in Walnut Creek on Th/Fri, driving to Santa Cruz on Sat. & staying over there for a friend's wedding on Sunday - thinking this would be fun, as it happens to be our anniversary weekend too! [36 BABY!! WOO-HOO!] But we've had to re-think all that & have decided to just 'play it by ear' and see how Ken is feeling. [Did I mention he'll be off meds? haha]

So, this week will be a very full week - we'd appreciate your prayers.