Owner: What's Shakin'? -- A Parkinson's Blog URL:http://blog.billywisdom.com Join Date: Tue, 27 Feb 2007 13:42:59 -0600 Rating:0 Site Description: Day by day, step by step in this blog penned by a medical podcaster preparing to take part in a clinical research trial for DBS in early Parkinson's Disease. Site statistics:Click here
Lookit the Purty BUTTONS!!! 2007-02-27 15:57:40 Feel free to overlook this post -- I'm submitting to blog directories, and they want their URL's listed.
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Not Ready For the NFL... 2007-02-27 14:45:14 OK -- we're up to date.? Live blogging starts...Now!True to my word, I started working out at the NIH Fitness Center here in Bldg. 31 today.It only took several signatures, $58.48, and a promise to let them pull $19 out of my checking account every month.And the suffering only STARTS there.One of my motivating factors here is that I am allegedly too fat to fit into an MRI scanner -- at least without coating my body with Crisco and packing me in with a spatula.? If I can drop a quick 10 or so pounds before going back to Nashville, I should be able to fit -- a tight, snug fit, but a fit.So.... wearing my new Hawaiian Flowerdy Swim Trunks and a loose, flab-hiding shirt, I went to the Fitness Center at about 11 this morning.15 minutes on the bike -- or "Life Cycle" as they call it.20 minutes on the treadmill -- or "Dread Mill" as I like to call it.I was hot and sweaty.? I need a nap.I will do this every weekday.Here's how I looked yesterday.By the end of 2007, I would like to look consid
Sittin' and Waitin' 2007-02-27 14:29:00 ORIGINALLY POSTED ON LIVE JOURNAL -- FEBRUARY 27, 2007
Been home about a week now.? I don't think I'll be driving any more.? I was wiped when I got to Nashville on the 15th, even moreso when I got home on the 20th.
Depending of whether or not I'm randomized for the surgery, I may have to make the trip several more times this spring.
I'll fly, thank you.At present, we wait for Chandler to contact me with the dates for the first step in the screening -- the CT/MRI, neuro and psych screening.? Thank goodness they've changed the protocol to allow out of towners like me to stay in the Clinical Research Center when we're in town for these sorts of things.After that, it's two weeks of keeping hourly symptom diaries.? Then the 8-day inspection, tentatively set for April 10-18.Actually, I'm doing well.? The 3 Stalevo 100s per day weren't getting the job done, so my neurologist suggested taking 4 a day.? That seems to be working quite nicely.Did our bi-weekly podcast on Friday.? (You ca
Nashville Chats III 2007-02-27 14:27:00 ORIGINALLY POSTED ON LIVE JOURNAL -- FEBRUARY 19, 2007Oh my God!What have I DONE?I SIGNED "THE CONSENT!"No!? NO!!!? NOOOOOOOO!!!!!!!Heh!? That was written for the benefit of the medical ethicist, Dr. Finder.? ? The man was relentless!? And that's just what you would want from someone who's job it is to make absolutely certain that YOU are absolutely certain that you are making a decision like this for the right reasons.
I'm sure.
Absolutely.
Back home tomorrow.? Back down here sometime in March for a couple days.? Then April 10-18 I'm here for the 8-day drool-fest... I mean, 8 days without medication.
But the first step has been taken. Read more:Nashville
Nashville Chats II 2007-02-27 14:23:00 ORIGINALLY POSTED ON LIVE JOURNAL -- FEBRUARY 16, 2007
Such nice people, these doctors.
Seriously!Met first with a very pleasant young lady who is the coordinator for the clinical trial. We discussed the protocol, why I want to take part, all the stuff you would expect would be discussed.Then I met Dr. Charles. Nice guy. Youngish. Has identical twin sons. VERY optimistic about the research. He really did a great job explaining the theory behind the possibility of neuroprotection from DBS. And although it's just a theory -- it makes great sense!Then I met Dr. Konrad -- who basically wrote the book on this procedure. He gave me a copy of the book. And he laid out the whole procedure, start to finish. Very steady hands. I like that. Clean fingernails, too!Then I met Dr. Finder -- and it was his job to ensure that I was fully informed and was making a wise decision based on my needs and expectations.Very nice afternoon. We'll get back together on Monday and I'll sign the consents. Read more:Nashville
Nashville Chats I 2007-02-27 14:19:00 ORIGINALLY POSTED ON LIVE JOURNAL -- FEBRUARY 16, 2007
I made it to Nashville
.
Eleven hours in a car is a long time.
It sucks when the FM part of your car radio doesn't work.All the sports talk radio shows spent the day yesterday talking about Penny Hardaway and why he hates gays.Trees look very pretty in the sunlight with a coating of ice on them. The same can not be said for highways. Thank God the roads were clean and dry.I got here at about 5pm Nashville time, which was about an hour after I was due to take my third Stalevo of the day. I staggered into the hotel lobby, happy that I had taken the time a few days ago to complete the "express check-in" thing on the hotel's website. It turned out to be a futile gesture as there was a couple in front of me that had some sort of problem it took the sole clerk at the desk some 15 minutes to sort out. But once it was MY turn, check-in was a breeze!Got to my room. Took a Stalevo. Got a bag of burgers. Watched a movie on Showtime. Fell asl
But first, we take care of the knee! 2007-02-27 14:16:00 ORIGINALLY POSTED ON LIVE JOURNAL -- FEBRUARY 8, 2007
I hated my old insurance.
You needed referrals to see a specialist. That meant you got to pay for TWO doctor visits, instead of just one.
With my new insurance, I can pretty much see whoever I want... whenever I want.
So it's time to get an old problem taken care of. Can you see anything wrong... with THIS knee? That's right. Two things. No kneecap. That came out in 1985 when I was in the Navy. Old football injury. Nothing to be done about it now! The thing I'm having taken care of is that BUMP on the head of my shin. That's the head of a screw (with bone that's built up around it since 1983) from an even earlier knee operation. You know you GOT somethin' when the orthopod rolls up your pants leg, looks at your knee and says, "Oh, my!" He assures me this is something that can be taken care of easily and quickly. Which is good, because with this out of the way I can concentrate all my anxiety on the upcoming DBS clinical tr
Ah Yes! the First Entry! 2007-02-27 14:14:00 ORIGINALLY POSTED ON LIVE JOURNAL -- FEBRUARY 7, 2007
Greetings!
My name is Bill. I have Parkinson's Disease.
Nothing new about that. I've known it since January 30, 2000. That's the day a very nice doctor in Miami told me I had a very early case of the disease.Since then I've done the following -- taken Mirapex (made me fall asleep behind the wheel), taken Sinemet CR (aaaah!), stopped drugs completely (wishing to forestall the eventual dyskinesia), and have been told by other doctors I don't HAVE Parkinson's because I'm much too young. (45 when diagnosed, 52 now.)Last week (after changing insurance!) I saw a movement disorder specialist. She said, "With all due respect to your former neurologist, you DO seem to have Parkinson's Disease -- and a fairly classical case of it."Yaaaay! I'm CLASSICAL!She gave me samples of Stalevo 100 -- I took one in the car. And in 30 minutes...I was standing up straight!I was walking with a normal stride!I actually had ARM SWING on my right side Read more:First
, Entry
Welcome to the Blog 2007-02-27 14:02:00 First, I'd like to apologize to Billy Big Rig.? You can still read about him at our home page, www.billywisdom.com -- but frankly, his adventures were really starting to wear me out.? We've canceled the daily podcast, and instead will focus on an area that I really care about these days.The fight against Parkinson's Disease.? I'm not just a spokesperson.? I'm a consumer.Follow me past the jump, and I'll tell you more.My name is Bill.? I've been diagnosed with PD since 2000.? The symptoms have really picked up as of late, and I'm currently taking 4 Stalevo 100's a day.? They do the trick.I'm also being considered for a clinical trial -- testing the safety and tolerability of Deep Brain Stimulation in Early Stage Parkinson's Disease.Here's what I had to say about it all on the podcast I produce every other week for the National Institutes of Health.? Click here for the audio link -- it's the second story in the podcast.Now.... to get this blog rolling... I'm going to post a Read more:Welcome
A Great Article on DBS 2007-03-01 09:00:00 I just finished reading a wonderful article by Steven Gulie in the online edition of "Wired" in which he describes his own experience with deep brain stimulation (DBS).We'll set aside the wonderfully delicious irony of writing about this procedure in a publication of that name for now. Read more:Great
, Article
We Introduce -- A PODCAST! 2007-03-01 08:18:59 This morning, I was scouring iTunes for a podcast relating to Parkinson's Disease.
Punchin' Parkie! 2007-03-02 08:33:00 Had to resist the urge to step on the scales last night. I'm already starting to notice a vague loosening of my belly chub. I've been dieting and working out at the fitness center here at work for a week, and I can feel results. But I'm only going to weigh myself once a week.Every work day -- a half hour on the "dread" mill. I feel good afterwards -- pumped up, invigorated, energized. Then after about an hour, I feel the need for a nap -- big time. But it's been great for dealing with stress -- if I had any, which I don't. Usually.Still...Ever had days where your symptoms have got you feeling down, irritated and edgy? Ever felt like you just wanted to PUNCH somebody or something?Maybe you could consider taking a boxing class. A story in the South Bend (IN) Tribune tells of just such a class that's keeping Parkinson's Patients active and punchy. You can read the story here. This part is cute!Holding up their fists,
This Week's Parkie Podcast Awaits! 2007-03-05 10:07:00 In this week's Parkie Podcast
...We celebrate my 2-lb. weight loss. (Huzzah?) News from the arena of Parkinson's Research, and an editorial commentary on stem cell research.Click the link for the Podcast
On Bended, Bumpy Knee 2007-03-06 08:30:00 Finally!After more than a week of trying to reschedule the knee surgery set for March 23, the surgeon's office called back yesterday. A fella can only leave so many messages before he starts to feel neglected and avoided...So now, it's set for April 27. It's really no big thing... I had an operation known as a "Trillat Procedure" done in 1983. Basically, it involves shaving off the head of the tibia (shin bone) with the south end of the kneecap tendon attached, moving it over a click or two, then screwing it into place. This is done to improve tracking of the kneecap when you bend your leg.Well, the kneecap in question was removed in 1985. So for 24 years I've been walking around with an orthopedic screw in the head of my shin bone. And it's started to attract company!That bump isn't the head of the screw... it's the "bone" that has grown up around it over the past couple decades. By itself, painless. But whack it on the dashb Read more:Bumpy
Oil Can! Oiiiiiiiiil Can!!!!! 2007-03-07 09:13:37 Remember that scene in the Wizard of Oz where Dorothy and the Scarecrow come upon the rusted-up Tin Man? Remember how happy he looked when Dorothy lubricated his joints with the nearby oil can?I had one of "those moments" this morning.See, I take my last Stalevo pill of the day at around 8pm. Then I go to bed. I get up at around 4am, or whenever Raven and Shiloh decide the yard needs to be moistened. So, at that point, it's been 8 hours since the last pill.This morning was particularly difficult. I struggled to get to my feet from sitting on the edge of the bed. I staggered to the door to get my robe as both dogs nudged my exposed backside with their cold, wet noses because I wasn't moving fast enough. (Raven's a border collie. Shiloh's a German shepherd. Their purpose in life? To "herd" things. I was being "herded" to the door.)I was walking like Frankenstein -- stiff legged, short steps. I had to put my hands
"Thank you. And YOU look INTELLIGENT!" 2007-03-08 09:07:38 In the podcast the other day, I made a passing reference to stupid things well-meaning people say when they learn you have Parkinson's Disease. My favorite is, "but you LOOK fine!" (I always reply -- mentally -- "Yes. I AM fine. I'm LYING to you about having PD! Ha ha ha!") Then there are the folks who think you may be faking it because you can move better today than you did yesterday.This lack of understanding came into glaring focus when Michael J. Fox did a political ad for a Democratic candidate for Senate in Missouri. Conservative critics (like the idiot Rush Limbaugh) attacked him -- first for faking the dyskinesia, then for being a shill for embryonic stem cell research. When Fox explained that the dyskinesia was caused by "too much levodopa" -- he obviously meant that the "sweet spot" where the right amount of medication leaves him relatively smooth and fluid was getting smaller and smaller. Limbaugh and others took it to Read more:Thank
Done In by the "Dreadmill"? 2007-03-09 08:59:01 Not such a good day yesterday.After doing a half hour on the "dreadmill" yesterday afternoon (another 2 lbs. gone -- congratulate me!), I was completely WIPED for the rest of the day. My 3pm pill (the 3rd of 4 I take each day) may as well have been rubbed on my forehead instead of swallowed for all the good it did. I spent the evening wobbly, shaky, unsteady, and taking small, staggery steps.I guess that's what they mean by "off."I'm supposing this was due to the workout. But I need to exercise. What to do?I think I'll modify the routine ... do it 3 times a week instead of 5. The weight will come off slower. But what the hell.So... what's new?
We prove once again that reporters generally are NOT good at reporting medical issues.Stepping in to help Parkinson's patients walk WATERLOO, ONT. — The irony isn't lost on Brent McFarlane. As the former Olympic track coach shuffled toward the door, hands firmly gripping his walker, he couldn't help bu
Go Get This Week's PODCAST!!! 2007-03-12 08:15:08 You'll find this week's podcast at http://parky.billywisdom.com -- subscribe, get it on your iPod, or listen to it right there on your computer! This week -- Remember that scene in the Wizard of Oz when the Tin Man got lubed? I had a moment like that last week. Also, stupid things people say, recent PD news, and an opposing viewpoint on embryonic stem cell research.
Chip Off the Old Blockhead 2007-03-14 08:10:32 This acorn certainly did not fall far from the tree. Just like his dad, my nephew Matt has a flair for things theatrical. We had a long chat on the phone yesterday and he told me about his upcoming role in a high school production of "Guys 'n Dolls". He plays the heavy -- the villain "Big Jule." "Just be big and menacing," I told him. He can do that.He's also quite excited about his upcoming performance at a high school state music competition. He's performing the song "Reviewing the Situation" from the musical "Oliver." He not only won his competition at the local level -- he got a perfect score.His dad would be very, very pleased. My identical twin brother Bob played the role of "Fagin" in a version of "Oliver" once -- I forget exactly where. Matt definitely got his love of theater from his old man.Bob died three years ago, March 19. He was 49. Way too young. (My Dad was 54 when he shuffled off the mortal coil Read more:Blockhead
Has It REALLY Been 8 Years Already? 2008-01-30 10:23:01 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. Read more:REALLY
, Years
New USDA Secretary, and How He Helped One of My Brothers 2008-01-30 03:17:07 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 Read more:Brothers
Jack Schmalfeldt -- 1953-2008 2008-01-12 01:46:47 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 s
Adios 2007! 2007-12-31 04:52:14
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! Read more:Adios
That Old Gang of Mine 2007-12-03 02:00:41 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 t
Changes in Latitude, Changes in Attitude 2007-11-29 02:49:19 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, no Read more:Latitude
Checking In! 2007-11-27 03:10:25
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 08:43:15 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 04:49:13 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 l Read more:Liveblogging
Liveblogging the Droolfest -- Day 7 2007-10-22 14:21:42 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 tomorr Read more:Liveblogging
Liveblogging the Droolfest -- Day 6 2007-10-21 14:48:16 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 lo Read more:Liveblogging
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