Just a request.

[walter529]

Well, Sunday marked my beautiful brides and my 12th anniversary. We wanted to go to a swankier eatery. But, here in Waynesville, they pretty much roll the sidewalks up at about 7:00. So, after searching for an hour, we settled on Sage Brush. We did have a nice trout dinner w/ a glass of Chardonnay, and had deep dish apple pie for dessert.
Once home, we had Mimosas and exchanged cards. She gave me one that actually made me cry. She apparently is pretty fond of me. Go figure!

[walter529]

It looks like ECD may be getting some attention on the "Pro Health" newsletter some time soon. The top dog there actually had to Google ECD once I mentioned it to her.
I wrote an article recently that should work for some publication. But, I really had to whittle it down for this one. Providing she likes it, the shorter version should be in the newsletter in a couple of months.

[michael11]

It looks like ECD may be getting some attention on the "Pro Health" newsletter some time soon. The top dog there actually had to Google ECD once I mentioned it to her.
I wrote an article recently that should work for some publication. But, I really had to whittle it down for this one. Providing she likes it, the shorter version should be in the newsletter in a couple of months.

Hi Walt!!

Good to see you.

xxx

[walter529]

Sorry. I've had trouble getting back in.
#1. My Ophthalmologist said he continues to be amazed by my good condition and sight.
#2. My Oncologist feels the same. But, I'm scheduled for an MRI in Nov..
#3. The FIH ECD study is on, and I'm in the process of getting a mountain of records to take/mail to them (Never crossed my mind to have the info E-mailed and faxed!?).
So, I'm busy, but good.

[walter529]

Again, it's been a while. Computer probs that we can't afford to fix. That means a new computer is out of the question, too. Crud!!
Anyway, as far as my health, my Dr.'s continue to be impressed. By their calculations where ECD is concerned, I'm supposed to be dead. Well, I ain't and don't plan to be be4 The Rapture.
The Nat'l Inst.'s of Health are conducting a study of ECD in Bethesda, MD. They have invited me to be a part of the study. My bride & I will fly to DC on 1/15/12. The "investigation" will begin on the 17th, as the 16th is a holiday. It'll involve blood tests, dental exams, bone density tests, PET scans, MRI's, CT scans, a peek at my cerebellum. etc.. This'll go on for 4-5 days, and Saturday the top doc will discuss the results w/ us be4 we head home.
We're excited, and are looking at a possible "mini-moon".
I had an article about life w/ ECD published in the local paper. Excited about its possibilities for encouraging those who've gotten a scary diagnosis and educating folks, esp. Dr.'s, about a disease few know of. If you're interested, I have the original and will be more than happy to E-mail it. I've started a page on FB called, "Defying a Frightening Diagnosis", where the article is in the form of a document, URL-http://www.facebook.com/groups/241550579217632/ .
Okay. That's enough 4 now. See ya sooner.

[mojobone]

Waynesville? Holy cow! I nearly got stranded in Waynesville, just the other night. I was on my way to Lake Wylie, it was 4 AMish and nuthin' was open, I was a couple miles from being outta gas; thought I'd have to sleep in the car til something opened up, but I tried my Visa at a dark and deserted gas station, and it worked! Only thing; I thought I was still in Tennessee....but hey, it was pretty late.

[Casey H]

Hi Walter
Glad to hear you are doing so well! I hope you continue to baffle the docs with your amazing ability to fight this thing!

Warmest,
Casey

[NYWest]

Hey Walter....

Many Good thoughts and prayers coming your way from San Diego....God Bless!!

All the Best...
Billy & Co.

[walter529]

Thanks all. Good 2 hear ur voices, esp. you, Casey. I'm still workin' 2 get "In America" noticed, or any of my songs, thru Music Xray so I can repay you. I got some interest in "The Gift". But, they wanted me to perform . That would be a trip w/ the meds I'm on!
Mojo. I don't remember what exit it is. The rd. is Champion Drive. But, if ur evr close 2 being stranded again in the Canton area there's an exit, #'d in the 30's. It's be4 the 1st Waynesville exit. There's a Dairy Queen, 2-3 gas stations, a truk stop, a Ken Wilson Ford dealership, and an Ingles grocery. You'll be smellin' the paper mill in that area. So, w/ the truk stop in mind, that's probly a good stop 4 gas right off of I-40-W. Oh, it's right after Newfound Road headin' West. Evrything's less than a 1/2 mile from the exit.
Hope that helps some way some how.
I spent about 1 1/2 hrs on the phone w/ NIH yesterday ironing out my flight plans, test sched. (About 31 tests in 4 days!!!) and sleeping quarters for my bride. I sleep & eat in the hospital mostly. We will get 1 or 2 date nights, though.
I received notice that another of my ECD family has passed. She actually sat beside her husband at the computer for our weekly chat group, and he keyed in conversation for her.
We have another friend in Australia who is in palliative care. None of the drugs or therapies are making any progress w/ her lesions. I do admire their strength in facing the future and maintaining a great attitude. I can not imagine how I would deal w/ losing my wife. I hope I nevr have 2.

[bete]

Walter, I just noticed this thread (wasn't even on Forum when it started) and am so pleased to see how well you have kept up your spirit through all these years. I've barely read the beginning posts,although I intend to find time to read more. I wasn't around to send good vibes through the roughest times.

Happily, I can send all the prayers, Reiki light, and good thoughts I can muster to keep you and your wife happy, feeling good, and using your time and energies to good advantage. Wishing you strength and all good things.

Bette