Just a request.

walter529 · Post by **walter529** » Sat Sep 15, 2012 5:04 pm

Went to the oncologist Wed.. He's quite pleased. Due to the report from the neurosurgeon, no change in the ventricles since '02, He's cut back on the # of MRI's I get to suffer thru each yr.. Just 1, I guess. The ins. Co. will be real happy about that

.

stephen · Post by **stephen** » Fri Sep 21, 2012 7:30 am

Now seeing this, will do. How are you doing now?

walter529 · Post by **walter529** » Fri Sep 21, 2012 7:21 pm

Well, good cop bad cop, kinda. Went to the dentist for a routine cleaning, and they found infection in the roots of 2 teeth. I have 2 wondrful root canals ahead. Dadgum!! I feel like a money pit. I really could stand to get a song out there, now. My ECD chat buddies say it well could be disease related. This means my teeth could start breaking off.

Yeeha!! But, that's IF the disease is involved in my jaw. This AM my family doctor called to say my oncologist called her to say he wanted her to see me soon?!! (Confusing enough?) I think it's about my depression. But, he's nevr done that be4. So, it has me wonderin'.
I'm smilin', though. My sister is trying to get it worked out so she & Mom can come up here, pick me up, and take me home for a couple of wks. I need that. My wife, no offense, is tired of me at the present. Needs a bit of a vacation.
Related to that, I'm trying to sell my Ibenez & my Peavey sound system so I'll have some $$. A wondrful friend at church is helping me w/ that. Gee, we have a great church family! Man!! I should write a book!!

walter529 · Post by **walter529** » Sun Sep 30, 2012 6:02 pm

NEWS!!
Got notice that there's going to be a meeting of the minds on ECD in San Diego in Oct. or Nov. of 2013. It'll include Dr. Haroche, from France, Dr.'s Vaglio & Dagna from Italy & possibly Dr.'s Kurzrock and/or Estrada-Veras from here in the US, and both of whom I've been seen by. These are all as close to experts as ECD can get. Plus, patients (not patience

) may get to attend, so they can more deeply study the affects of the disease over extended periods of exposure. Plus, I'm sure they want to learn our secret. The avg. survival after Dx is 40 mo.'s. I'm at 63

(Thank Ya, Lord). I've never been further West than Houston. I'm game!! Let's go!!

walter529 · Post by **walter529** » Tue Nov 20, 2012 9:59 am

Meds have been kickin' my butt lately. I go to bed w/ my wife at 10-10:30, she gets up at about 5a, I fall back to sleep, she kisses me good-bye at about 6:30, I fall back to sleep, and I'm dead 'til noon or worse at times. I actually slept 'til 2p one day. 16 hrs is too much by a long shot! I did NOT like that.
Got good news, tho. The ophthalmologist (Wow, that's a mouthful!!) reported that my vision & optic nerve have actually improved. Good news always lifts the ol' spirit.
Oh. Just a blatant recommendation. I watched "Monumental" (monumentalthemovie.com). A documentary by Kirk Cameron. I found it wonderful. Actually bought it! A real history lesson, outside of public school. It gave me hope that America?!, she ain't dead, yet. Taught me lotsa stuff, literally written in concrete, that I didn't know.
Just a quick brag

. William Brewster is my direct decendant. I wanna take my Mom up to Plymouth, now. It's her bloodline. Jus' gotta find the $$ .

michael11 · Post by **michael11** » Tue Nov 20, 2012 10:25 am

Hi Walt!

It's always great to hear from you.

TC,

Mick.

walter529 · Post by **walter529** » Wed Nov 28, 2012 10:26 am

Well, looks like San Diego is a go. Provided we get there, I'll be able to meet folks I've been chatting w/ on-line for over 5 yrs and who've been very supportive & helpful. I'd also get to meet, hug and thank our fearless leader, Kathy Brewer. She is the lady who found out her husband had ECD from his autopsy.
I'm gonna be optimistic & get excited now!!

walter529 · Post by **walter529** » Fri Nov 30, 2012 7:30 pm

6 of 1, 1/2 dozen of the other. Probably jumpin the gun. But, the last day or so, I've wondered if something is up. My balance has been gettin' worse, & my legs have been feelin' weak. Plus, I've been getting tired easily (Med side effects). Something's been going on w/ my left arm, too. Starts off in my scapula like a muscle pull, moves into my tricep w/ a sharp,pulsating ache, next is my forearm & feels like a nail's been driven into my ulna, then my wrist starts feelin like I've smacked it on a branch. Geez! If it ain't one thing it's another. Good thing I have a doc appt next wk. Chat group's tomorrow, too. Should get some ansrs one place or the other. I just wonder if I'm not head'n' for a wheel chair or a Hover Round (Vroom!!)

. Hope not.

walter529 · Post by **walter529** » Sun Dec 02, 2012 4:02 pm

Well, according to the folks in chat, due to bone involvement in my lower legs & the Fentanyl, which weakens the muscles in time, I could wind up cruisin' in a Hover Round. Crud! Ah, well. Some low riders, hydraulics, a DVD player w/ a bass cannon, and I'd have quite a ride!

walter529 · Post by **walter529** » Mon Dec 03, 2012 4:17 pm

Well. That didn't take long.
I'm actually a bit worried. I can't seem to lift my legs like I should. I've been tripping on steps, roots, rugs, etc. My upper legs do tire easily & feel weak. I don't like this

. I see our physician Wed., though. We'll talk.

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