Deep Brain DiaryDeep Brain DiaryA little humor, a little satire, and a lot about life with Parkinson's Disease. 
Articles
I'M RETIRING THIS BLOG, BUT...
2008-03-13 15:57:00 ...if you'd like to continue following my exploits, please change your bookmarks to...HTTP://BLOG.HUNKYDUNK.COM THANKS!!! More About: Blog
Comment on Jack Schmalfeldt -- 1953-2008
2008-02-01 16:49:00 Hi BillSo sorry to read of your loss. Much like my Dad's 7 years ago. I understand how you all feel. Just wanted to say thanks to you Bill for being a job reference for me. I love my new job, and think I got it because of your reference. Hope you and your family have a relaxed weekend. Eileen More About: Jack , Comment , 2008
Comment on Has It REALLY Been 8 Years Already?
2008-01-31 23:36:00 Wow is right! More About: Years , Comment
Comment on Has It REALLY Been 8 Years Already?
2008-01-31 23:34:00 Hi, I am starting a 100 Chronic Illness Blogs list for my blog, may I add your blog? email me atstellarlife@yahoo.com(sorry, I couldn't find the email-you link, but my brain is shrinking...MS and all.) http://dj-astellarlife.blogspot.com/ More About: Years , Comment
Has It REALLY Been 8 Years Already?
2008-01-30 17:18:00 Wow.I just realized what day it is.It's January 30, 2008.On January 30, 2000, I was a patient at the Parkinson's Clinic in Miami. Dr. William Koller gave me the official lowdown on what was causing my symptoms. He told me it was Parkinson's -- it was a life sentence, not a death sentence. He started me on Mirapex.Eight years ago today.Eight years.Wow.Time flies when you're having...Never mind. More About: Years
New USDA Secretary, and How He Helped One of My Brothers
2008-01-30 10:00:00 I got to meet the new Secretary of Agriculture yesterday.Ed Schafer served as Governor of North Dakota from 1992 to 2000. He was confirmed by the Senate on Monday, just in time to attend the State of the Union as a member of the Cabinet. Yesterday, there was a "meet and greet" in the patio of the USDA Headquarters in Washington.I am a product of a good, old-fashioned, Oliver County, North Dakota public education. My family moved to tiny little Center, N. Dak. when I was 15. I graduated high school in a class of 40 kids.My late twin brother, Bob, moved back to North Dakota on a couple occasions... the most recent being in the late 1990s. After having a workplace accident (at a radio station, yet -- the casters came off his office chair and he fell and reinjured his already touchy back), Bob was living on Worker's Compensation. He was frustrated by his doctor's unwillingness to prescribe enough medication to treat Bob's pain. The doctor exp... More About: Brothers
Comment on Jack Schmalfeldt -- 1953-2008
2008-01-19 15:38:00 Bill, thanks for your wonderful writing! It's nice to hear the whole story with a time line. It was good to see you again even though the occasion was sad. I think Jack would feel the same way Hound Dog Taylor felt. He said "when I die don't sit around and cry, have a party". We all have to go on living our lives, but we will all miss Jack. He enriched my life over the last twenty plus years. I'm sure many others feel the same.Billy Rose More About: Comment , 2008
Comment on Jack Schmalfeldt -- 1953-2008
2008-01-12 08:41:00 Honey, it was my honor. And Gail was glad she could be there, too. Tell your mom that anything she needs, just ask.Uncle Bill More About: Jack , Comment , 2008
Comment on Jack Schmalfeldt -- 1953-2008
2008-01-11 13:29:00 Mom and I wanted to thank you for this. Mom said when she gets her printer hooked up she will print this out, because under the circumstances she failed to document what was going on day by day, and she wants to have a record. We appreciate everything you and Gail have done for us throughout this trying time. Your loving niece, Rose More About: Jack , Comment , 2008
Jack Schmalfeldt -- 1953-2008
2008-01-11 12:04:00 My big brother Jack died on January 4, 2008 . My 53rd birthday. He would have been 55 in February.It was lung cancer. And it happened very quickly.On Dec. 3 my fellow sibs and I got an e-mail from our Mom in Wisconsin telling us that Jack's wife informed her that Jack was in the ICU. He had been having trouble breathing since his return from a trip to Las Vegas with my uncle. Jack was always one of those folks who wouldn't go see a doctor unless there was a bone poking out of a gaping wound.In her e-mail, Mom informed us that doctors had drained several liters of fluid out of Jack's left lung space and he would have to stay in the hospital until they figured out what the problem was.Jack got home from the hospital on the 6th and called Mom. He said they still did not know what was wrong and he was less than thrilled with his doctors there at the small town hospital in Clinton, Iowa -- our home town. He assured Mom he would go to the Univer...
Adios 2007!
2007-12-31 11:46:00 Good lord, what a year! Thinking back on New Year's Eve a year ago, the concept of Deep Brain Stimulation was not something to which I gave a great deal of thought. Now, 365 days later, I feel better than I did a year ago. There are still some days in which I feel better than others. But I'm taking around half the medication I was taking before the surgery, and I'm not having dyskinesia. So, it's a win-win situation. I haven't been in touch with the folks at Vanderbilt for awhile, so I don't know how recruitment efforts are going for the clinical trial. Let me put it out there again. If you fit the profile, why not consider taking part? God gave you this lemon called Parkinson's Disease. Let's make some lemonade! Happy New Year, folks!
Comment on PD -- The Early Days
2007-12-30 12:20:00 Thank you. I have Parkinson's too and I will soon be writing about it too. Your writing is very good and helpful. More About: Days , Early , Comment
That Old Gang of Mine
2007-12-03 08:43:00 As much as I'm looking forward to getting started on my new job a week from today, leaving this one is not the easiest thing I've ever done. I feel like a popular character on a long-running sitcom, leaving the show for good after one final episode,I still have a full week to go here at NIH, but we had my "going away" party on Friday at a local eatery in Bethesda. It was well-attended with most of the OCPL gang there to wish me luck. I will genuinely miss these folks. It's been a great crew to be a part of, and I think I can honestly say we got a lot of good things done during my tenure here. For one thing, the NIH RESEARCH RADIO podcast is back in the iTunes Top 100 charts (in the Medicine subcategory), so that's no small accomplishment. I hope these cats will keep it going and make it even better. My final episode hit the ether on Friday.My office is bare and empty. I have just one major duty to perform this week, and that... More About: Gang , Mine
Changes in Latitude, Changes in Attitude
2007-11-29 09:22:00 Not including today, I have six work days left here at the National Institutes of Health. Gotta admit, I'm really looking forward to the new gig at the USDA.For one thing, I will be doing a lot more writing. There's still some "Radio" work involved, but a LOT more writing. And the commute will be SO much better.This is a good gang here at the NIH, and it was fascinating to be here on the cutting edge of scientific discovery. And, no doubt, it never would have occured to me to get involved in a clinical trial had I not been so actively involved writing about getting OTHER folks interested in taking part in that kind of research.Funny how things work.My Mom was worried about my leaving NIH until I explained that I'm just going from one government agency to another, not losing any seniority, and getting a decent raise in the meantime. She has reason to worry, I suppose. When I left XM Satellite Radio, it resulted in a huge drop in salary, a comple... More About: Attitude , Latitude
Checking In!
2007-11-27 10:03:00 Hey, cats and chicks! Just checking in! It's been awhile. Not much going on since the last entry. Just enjoying life! Getting the place squared away for Christmas...Relaxing...Or just driving around in our new car.Big changes coming, though. On December 10 I will start a new job, as a Writer-Editor with the US Department of Agriculture in downtown Washington, DC. I'm looking forward to the new challenges and the new surroundings.I'll check in from time to time, but please... drop me a line at billy@billywisdom.com and let me know how YOU'RE doing!Next Droolfest? April 3-11, 2008!
Sleeeeep! Must... Have... SLEEEEEEP!!!!!
2007-10-24 15:37:00 Thank God this day is nearly over with!!! I've had about 30 minutes of sleep since yesterday morning.Got home a little after 6pm ET last night, got my bag, and Gail picked me up and took me home. SAw the beautiful job she had done on remodeling the bedroom and bathroom -- fresh coats of paint, new photos, fixtures, etc. The lady has an eye for that sort of thing.Went to bed at 9. Got back up at midnight. Went back to bed at 1:30. Got up for good at 3:30.Just could not shut off my head.I don't think PD has anything to do with this. Anything that screws up my schedule is likely to give me a little bit of insomnia. If I don't sleep tonight, that's a problem. But betcha I will.
Liveblogging the Droolfest -- Day 8
2007-10-23 09:54:00 7:56 amFirst and foremost, a big, friendly HOWDY to RICH from MICHIGAN!!! (Just a quick shoutout to one of the most regular readers of the blog.)Now, on to business.I get to go home today. Yaaay! This has been a long week. But in a way, I think it's a good thing -- not just for the fact that the researchers need this week to measure our progress. I think it's good for each of us to know how bad the disease is, unmedicated or unstimulated. It can't help but make us appreciate how good we have it when the devices are turned on and the meds are working.Dwayne, Wayne, Ronnie and I will go our separate ways today after we each get our final UPDRS check on videotape. Then we can take our pills and (except for Wayne, who's in the control group, God love 'im) turn our devices back on. I wonder how long it will take to get back to "where I was" symptom-wise.Brekky will be here in a minute. Then the final "Arm Purpling Blood Pres... More About: Liveblogging
Liveblogging the Droolfest -- Day 7
2007-10-22 12:27:00 10:29 amIt occurs to me that this would be far more interesting to "liveblog" if there were more interesting things HAPPENING!Sadly, it's just another day at the GCRC. Had my breakfast (spilled my cup of coffee all over the floor, thanks), had my visit with Dr. C, had my Arm Purpling Blood Pressure Torture, and now I'm sitting in my bedside chair, getting caught up on some work, and deciding to write something in the blog about how there's really nothing interesting going on.Let's face it. This has been like watching paint dry.I'm entirely washed out. I feel slow and stiff, my typing sucks (I'm correcting it as I go, because otherwise you wouldn't be able to understand it...) but I don't know how this compares to the LAST droolfest in April. I guess we'll see tomorrow when I take the final UPDRS tests before turning the devices back on and taking a Stalevo.So, it's about 90 minutes until lunch. It's Fried Catfish today. Uh, yay? T... More About: Liveblogging
Liveblogging the Droolfest -- Day 6
2007-10-21 09:41:00 7:43 amWhew! That's a load off of my mind. Joe got in touh with me last night amd will be here with the Blackberry around 9-ish. I'll take him out to breakfast for his trouble. I knew that the blackberry was in his car, but still there's that little bit of uncertainty...what if it isn;t?Yes, I am typing wihtout correcting my mistakes this morning. Just want to see how far the hand coordination has gone. Not too bac, actually. Dr. Charles will be in around 8:30-ish to do the daily UPDRS thing, then my breakfast with Joe. The other fellas are heading off to church and then for lumnch over at Wayne;'s place. I'd go alonmg, but I really, really meed my Blackberry back -- it's government-issue, and hey don't look kindly on little boys who lose their Blackberriues!Ten, an afternoon of waching football. Thjey actually have a Redskins game on down here today. Now that the Packers have beaten the Skins... go Skins! ... More About: Liveblogging
Liveblogging the Droolfest -- Day 5
2007-10-20 09:37:00 7:39 amIt sure is hard liveblogging ANYTHING when you just don't feel like writing...I passed on taking the Ambien last night because I had a drink with dinner. So the night was spent flipping and tossing and having wild dreams about driving a tanker truck and getting it stuck in sand and having minor accidents banging the trailer into things and getting dispatched to far off odd locations...I think I'll have the Ambien tonight.In about 20 minutes, the lads and I will toddle over to the PD Symposium being put on by the VUMC Neurology Department today. Should be interesting. Maybe I'll feel like writing something about it. -----4:40 pmWell, right now the lads are off enjoying themselves with one of the original DBS guys... and I'm sitting here in the room waiting for a phone call from my little brother cuz I dropped my Blackberry in his car last night.I noticed it was gone when I put my jacket on. Then I recalled how I heard a "clunk" when I sat down... More About: Liveblogging
Liveblogging the Droolfest -- Day 4
2007-10-19 10:32:00 8:34 amWe're halfway through. Huzzah!Actually feeling slightly peppier this morning than I did yesterday. Maybe that was the low point and it gets better from here. We shall see.Slept great, thanks again to Mr. Ambien. I understand there were severe storms that rolled through Nashville last night. Couldn't tell by me. Closed my eyes at around 10:30 and didn't open them until about 7.Just had a shower, followed by breakfast. Not quite feeling "energetic" or anything like that, but I do feel like I'm in a better mental place today than I was yesterday.So... we await the "Arm Purpling Blood Pressure Torture," the visit from Dr. C, and then a visit with my little brother tonight.-----8:18 pmI think I've figured out why my BP has been trending high during the "Arm Purpling Blood Pressure Torture."When we do the sitting part, I generally sit on the edge of the bed, which presses into the back of my thighs, cutting down on the flow of blood in... More About: Liveblogging
Liveblogging the Droolfest -- Day 3
2007-10-18 10:45:00 8:47 amSlept like a lord last night. Two Ambien before bed did the trick. I don't think there was any construction going on, but really they could have torn down the hospital and built a new one around me and I probably wouldn't have noticed.Just had brekky... bacon, omelet, a tiny danish, cereal and coffee.Typing is beginning to get challenging. Perhaps it would be instructive in one of these posts to just leave up what I originally type without going back to correct it. Maybe by Sunday or Monday I'll give that a try.Other than my morning visit with Dr. Charles and the "Arm Purpling Blood Pressure Torture," really not much on the agenda today.------7:30 pmMan, I really have been out of it today.Really nothing to write about today. I took a 45-minute stroll around the campus this afternoon and have been wiped out since. My legs ache, my arms weigh a ton, and even my FACE feels tired.Talked to Gail for awhile this afternoon, and she noticed that... More About: Liveblogging
Liveblogging the Droolfest -- Day 2
2007-10-17 04:17:00 2:19 amWhat I want to know is, who's brilliant idea was it to conduct overnight construction projects here in the Medical Center North area? Since about 10 pm last night, someone (it sounds like he's one floor below me) has been running what sounds like a pneumatic paint chipper. Forget getting any sleep. The grinding, grinding, grinding and grinding have put an end to all hopes of that! I have to wonder... did whoever authorized this overnight work realize that there is a Clinical Research Center here on the third floor, with PATIENTS, some of whom might want to actually get some SLEEP at some point during the night?I'm sure it seemed like a great idea to someone. We'll chip paint, or remove plaster, or grind up drywall or whatever the bloody @($#! they're doing down there at almost 2:30 in the morning while all the offices are empty.I know we PD patients are not the only ones here in the Research Center tonight. Sorta makes you wonder what ... More About: Liveblogging
Liveblogging the Droolfest -- Day 1
2007-10-16 09:39:00 7:40 amGot up about an hour ago. Felt a keen desire to take a Stalevo. May as well take them while I still can, right?We're about 20 minutes away from the first appearance of our old friend, "Lump o' Egg." That is, if they don't cross me up and put an OMELET on there today. That could happen. I won't know until it gets here.Met the other three DBS dudes here for their own 8-day assessment. Two have had the surgery, one is in the control group. Those guys are the real heroes, I think. They devote themselves to coming here and taking part in the study, even though they haven't had the surgery. But without them to compare the surgery patients to, this whole thing is a waste of time from a research point of view. Oooooh. The CNN weather guy says we might be in for severe weather here. Cool. But I do need to dash out to a convenience store today to get some basic staples... soap, shampoo. I forgot.&n... More About: Liveblogging
Liveblogging the Droolfest -- Day 0
2007-10-15 19:00:00 5 pm (Central Time)Well, here I am -- same room as last time I was here for an 8-day stint. I'm all checked in. Nurse Eunice has strapped the wrist band on. I have officially begun the 8-Day Droolfest II.I'll write more in a bit. Dinner just got here. And it's meatloaf. Mmmmmm. Meatloaf.----Well, I made quick work of that. Wasn't really hungry... pigged out at McDonalds at BWI before getting on the plane.Ah, the plane. There's usually at least one major annoyance per plane trip. This time it was the yammering, nattering old lady in the seat behind me. This easily offset the bonus of having an empty middle seat next to me. I employed one of the "How to Get an Empty Seat" techniques I defined in a recent blog entry -- find a fat guy sitting by a window, grab the aisle seat, leave an impossibly thin space between you and the other fat guy. It worked again. But the yammering, nattering, high-pi... More About: Liveblogging
YOUTUBE Makes Me Look Bald, Fat
2007-10-12 11:21:00 The good folks here at the National Institutes of Health have devoted part of their monthly "i on NIH" video podcast to my surgery. You can see it here on YOUTUBE.http://www.youtube.com/watch?v=f_ 8XUaNqrjcIf you'd like to see the entire NIH Video Podcast, click...http://helix.od.nih.gov/vodcast/1 0122007vodcast_0006.mp4Yes, that is my voice at the beginning. My story is about halfway through the podcast. More About: Youtube
Dr. Charles to the Rescue!
2007-10-09 09:19:00 Yesterday was Columbus Day. That being one of those phony baloney government holidays, it meant I had the day off as I am a phoney baloney government employee. As we are in the midst of the most ungodly hot and humid October on record here on the Eastern Seaboard, I was lounging about in my summer "at home" uniform. Underpants.Shortly after noon, the phone rang. It was Dr. Char les . He was in Washington. He had brought the DBS programmer along with him. And he offered to fix the problem I was having with the stimulation in the right brain if I could get to his hotel at 6 that evening.Now here I had been expecting to just leave the right brain electrode turned off until the end of the upcoming 8-Day Droolfest. But the good doctor said he preferred that I have the thing turned on and set at a comfortable level, even though in a week we will be shutting the whole thing down for eight days.So, I put on some clothes (after a n... More About: Rescue
May I Take Your Order, Sir?
2007-10-05 10:53:00 (EDITOR's NOTE -- Sorry... I had to disable "comments" for the time being. A "spammer" found this blog, and I've had to delete hundreds of "spam" comments. If you have something to say to me, click the e-mail link. And thanks!)Coming up, a trip to Los Angeles, the difficulties of ordering a pizza from a motel room, and the continuing adventures of Dysko Billy. But first, off to the newsroom. Looks like they have some catching up to do in Korea. Korea has more Parkinson's disease patients per capita than any other country in the world, but 70 percent are misunderstood as suffering from normal aging effects or senile dementia and are not receiving proper treatment. Only 33.3 percent of Parkinson's patients in Korea are diagnosed accurately, with the other 66.7 percent believed to be suffering from normal aging effects or dementia. If you happen to check out the website, try not to be taken aback by the last paragraph, in which it states PD event... More About: Order
The Adventures of DYSKO BILL!!!
2007-09-23 08:48:00 Well. Darned if THIS isn't turning into something of a mystery! As I mentioned in my previous entry, I had planned to just let this thing sit and stew awhile in the hopes that the dyskinesia and other side effects would just calm down. Then, on Wednesday, I had a revelation. An incorrect one as it turned out... But still... As I stood on the train platform waiting for the Maryland Amateur Railroad Club to arrive, collect its passengers and whisk us all to DC, I realized that I could NOT get my left knee to lock and allow me to put my weight on my left leg, stiff-legged. That's when the light went on. Left side. Controlled by right brain. Both sides of the brain getting the same, new setting of 1.5 watts from the adjustment on the 17th. As I am primarily RIGHT sided with my symptoms, this MUST mean the RIGHT brain (which controls the LEFT side, which is NOT as badly affected by my PD) is getting -- TOO MUCH STIMULATION and that HAD to be ca... More About: Adventures , Bill , The Adventures , Advent , Ventures
Would you like some HUBRIS with that, sir?
More articles from this author:2007-09-18 12:30:00 I’ve got some tips on how to ensure an empty seat next to you on a crowded airplane, as well as how to mask that pesky dyskinesia. And would you care for a helping of hubris with that? Fine. But first? Off to the newsroom. You know what they say… all God’s chilluns got genes? It’s true! And it MIGHT be your genes that resulted in you coming down with early PD. According to the Science Daily website people with a certain gene mutation are more likely to get Parkinson's disease before the age of 50 compared to those without the gene abnormality. This is according to a study published in the September 18, 2007, issue of Neurology®, the medical journal of the American Academy of Neurology. For the study, researchers analyzed the genes of 278 people with Parkinson's disease and 179 people without the disease. The study found 14 percent of the people with Parkinson's disease carried mutations in the glucocerebrosidase (GBA)... More About: Some 1, 2, 3 |
|
 |
|
 |
