My Parkinson's DiaryMy Parkinson's DiaryDiagnosed with Parkinson’s disease in 2000, Deep Brain Stimulation surgery in 2007, I’m a 55-year old Federal Employee who works from home because my walking and balance have gone to hell. Still, I attempt to attack this disease… mostly by laughing Articles
Fun With Dementia!
2010-10-27 17:23:00 You know, as long as you're slipping into dementia anyway, you may as well have a little fun with it while you are still able. I suggest printing out this list and saving it for a day when you feel those first, subtle signs of dementia starting to creep in... that way you can refer ... More About: Parkinson , Dementia
The Disease Progresses
2010-10-27 14:52:00 Although it seems kind of stupid to use the word "progress" in any form when discussing one's dance with Parkinson 's disease. I now find myself using my cane, even for simply moving around the house. This came about Monday when my addled midbrain was trying to negotiate the distance between Shiloh lying on the floor ... More About: Disease
FREE DOWNLOAD: ?DEEP BRAIN DIARY?
2010-10-27 01:08:00 Because you are a frequent visitor to this blog -- and I love it when you drop by -- I'd like to give you a little present. A free copy of the first book in my Parkinson 's disease series -- "Deep Brain Diary ." I'm doing this for a few reasons: 1. It's a good book, ... More About: Download , Free
On the Subject of Direct-to-Consumer Marketing by Big Pharma
2010-10-26 17:22:00 "Say! That KNEE REPLACEMENT PROSTHESIS I saw on TV last night looks SHARP! Oughta GIT me one a those!" Saw a commercial last night that nearly floored me. I have long wondered why Big Pharma feels it's necessary to advertise their prescription drugs -- the stuff YOU can't just walk into a drug store and ... More About: Marketing , Consumer , Direct
It?s Autumn, and There?s a SMELL in the Air! It Smells Like FAVRE!
2010-10-26 13:59:00 Can you smell it on the fresh autumn breeze, with the leaves falling and the days getting shorter and cooler. I sure can. It smells like -- DECEPTION! Oh, poor Brent Farve (formerly known as Brett Favre). Him gotta owie on his widdle ankle Sunday night. Now him might not PWAY next Sunday against the ... More About: Wisconsin , Smell
Old People? Eeeew! They?re? OLD!
2010-10-25 17:57:00 I want to expand a little on my hypothesis that one reason there is no nationwide, publicized, "Jerry Lewis"-type effort to fund and find a cure for Parkinson 's disease is -- people don't want to look at older people. To further this hypothesis, I submit two publications specifically targeting older folks. First, let's examine the ... More About: People
Just Call Her My Caretaking Angel
2010-10-24 17:40:00 I did a telephone interview this week for my day job. It was about "caretaking," how spouses who never bargained for the 24/7 nursing care of their loved one react to finding themselves in that position due to disease or injury. Of course, I approach the story from the other side of the spectrum... Although ... More About: Parkinson , Angel , Call
When Will We Ever Learn
2010-10-23 22:30:00 I don't want it said that we SPOIL our doggies or anything like that, but there are days when we let them pick out TV channels. They usually land on something crappy, like Animal Planet or infomercials about food preparation. Raven likes to watch TV shows about dogs. Hey, it's a Saturday thing. It doesn't ... More About: Family , Learn
Lessons Learned During Morning Ablutions
2010-10-22 15:50:00 I thought I'd share with you a partial list of things I've learned during my last year with Parkinson 's disease. We'll start with things I've learned during my morning clean-up. 1. First thing in the morning, LOOK at your pills before you take them. I take five pills first thing in the morning. It would ... More About: Morning
Your Latest ?Muz Dispatch? From Becki
2010-10-22 13:22:00 It would seem that my mom and my sister's dog, Bob, had a wonderful visit the other day at the rehab facility. My sister Becki tells all in her latest report from Milwaukee. (Wednesday) evening, I took my dog Bob to visit his Gramma. The minute we got off the elevator, an alarm was going ... More About: Dispatch
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
More articles from this author: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 1, 2, 3 |
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