Fwd: Kelly's DBS update & corrections
- ---------- Forwarded message ----------
From: Kelly and Rebecca <rjklane@...>
Date: Sat, Aug 1, 2009 at 11:40 AM
Subject: Kelly's DBS update & corrections
To: Pat <Captain@...>
Cc: "Cara K. Lane" <cklane@...>, Deb Knowles <clarionet@...>, Father Uncle Brother Brian Lane <lanecpc@...>
Friends and Family,
- Last week’s mailing about Kelly prompted so many responses with prayers & good wishes! Thank you! The present of your presence, even electronically, is very warm and fuzzy.
- This update includes changes from the first schedule plus more info. Read on if you want. Don’t if you don’t. The page is meant to inform not offend.
- Tuesday, 28 August Kelly's drug response was a mess for 2 days! Kelly was “drug free” from 5 o'clock Monday afternoon to midmorning Tuesday. He had not been this long without his chemical buffers for 13 years. However, the doctors needed to see him at his worst (and they got it!).
- Monday, 3 August, screws will be anchored to Kelly’s skull. These will secure the device that aims the probes soon taking up very targeted residence deep in his brain.
All your offers of help and space on-line and in person are presents given in His presence! Thank you! Tess and Don, Karen and Gordon, Mike and Janet, and Marty are making housing in Denver very much a non-problem.
- Friday, 7 August is the big day. The probes are placed in a 4+ hour interaction between MRI, CAT scan, OR staff listening for nerve “sounds” and the surgeon making final placement with lots of input. They have the confidence gained from doing this procedure with the same medical team since 1996 (AND, their outcomes are much better than the average!)! Probes are placed one at a time, re-aimed and reinserted as many times as necessary to get good response from an awake, but totally off drugs Kelly. He will stay in hospital for a day or so until stable.
Daughters Ingrid and Kelsey join their parents for this procedure. They are just returned from summers in India and Alaska respectively. Ask their parents about those adventures sometime…!
- Tuesday, 11 August the stimulator (pacemaker) is inserted under the skin and hooked up (On the right side. Kelly shoots left-handed!) This is NOT turned on yet. The next 2 weeks are to heal at home and let an insulted brain settle back into normal. Confusion and other un-fun responses to having all those needles stuck in the brain is normal and expected. An important part of this time is to avoid infection. Drop by. Kelly may pedal with you or join friends for a meal or a drink, but not likely paddle or work on a floor.
- Tuesday, 25 August – Thursday, 27 August stimulator is TURNED ON! This is the first week programming the stimulator to minimize physical effects of Parkinson’s. Pace is totally variable for each individual. After a concentrated first week of programming, weekly sessions continue as needed (if needed) till Kelly is his max-best! He will then concentrate on paying it forward in the next chapter of a wonderful life supported by your love, care and prayers.
- To learn more, there is a great independent DVD about DBS called “Shaken.” The only public showing of this outstanding DVD was on PBS July 26 at 9:30. Kelly ordered a copy. You can borrow it or get info at www.lilafilms.com.
- The weblog Shake Rattle and Roll links to lots of current DBS info. http://katekelsall.typepad.com/my_weblog/parkinsons_deep_brain_stimulation/. So far, DBS has seemed like a miracle, yet there is a dark side. The site above links to a study that looks into this. DBS does not come on a silver spoon. You still have Parkinson’s! AND it continues to advance! It is more like picking up peas with the flat side of a knife. Some slip off, but enough gets to your mouth to make it worthwhile!
BTW: This note was sent to an updated but smaller, more limited mailing list than the first one. If all this mail offends you, please say so. If someone you know is not on the list and should be, please say something. If you want to share this mail with someone inadvertently forgotten, please do. Unless one of the Lane girls writes sooner, next update likely after the Aug 11 surgery. Thanks! Kelly
THAT WASA THE END. KELLY DID NOT COME DOWN WITH VERBAL DIARRHEA!
BELOW IS THE FIRST NOTE SENT LAST WEEK, INCLUDED FOR REFERENCE IN CASE YOU DID NOT RECEIVE IT
My dear, dear friends and family,
Many of you have asked about me in recent months. THANK YOU! I do not getting out nearly as much as I used to. Driving is no longer safe for me and rides get “complicated.” My “off” times now consume a good 70% of my days, (and nights). However, life is good, and I plan on living a lot more of it. I am honored that you ask. Much of the last 6 months have been taken up with multiple trips to Denver, where I established my candidacy for brain surgery. The process is called Deep Brain Stimulation surgery (DBS).
KELLY HAS A SCHEDULE FOR DBS SURGERY! After months of waiting, things are moving fast! Surgery dates are August 4, 7, 11. We meet with the surgeon August 3, and screws for stabilizing equipment in a later procedure are implanted in my skull the next morning. We wait a few days for that to settle, and August 7, 2 holes are drilled in my skull to access the brain. A pair of slim probes are inserted into the base of my brain on both sides and artfully guided into the best spot by my body’s reaction to the probes. Then the surgeon tops off the morning by threading the probe wires under the skin, down my skull, neck and across to the front of my chest. Barring infection or other complications, August 11 the “pacemaker” for my brain is inserted under the skin and connected to the probe wires. Then begins a whole nother’ journey, programming the electrical currrent to trick the brain into thinking it is transmitting signals to the waiting muscles without the missing dopamine. This is a good, experienced team. They have experience and very good results. At this point it is likely time to let go and let God. Becky returns to work August 19, so the window is tight, but promising! By His grace, we will return with renewed vigor for jousting at windmills and cultivating our very haggard money tree. Just a few more hoops to clear and shrinking time to get hem done. Becky and I go to Denver Monday July 27. I must go 12 hours without my drugs and present myself at the doctor’s door at my worst! I have not gone 12 hours without drugs for nearly 13 years. While I know this is valuable data for managing my Parkinson’s after surgery, I do not want to be that person! Imagine: Riding in a chair, ramrod stiff, expressionless, neck and back cramped sideways, legs, feet & toes locked in Charlie horses, unable to navigate the bathroom, dressing, even feeding yourself. Unable to write or speak intelligibly. Then I pop some pills, someone helps me swallow them, and within the hour Kelly is back!
Parkinson's is a very subtle disease. It is also insidious! You do not get better! A very large problem we People With Parkinson's (PWP’s) face in this world is perception. Countless times, I run into you or other good folks who say, "Kelly you look so good today!" I know you mean well and I appreciate the conventional complement. However, most days, I would like to throttle the speaker of such words. I am NOT "so good." I may feel good. It might be on my drugs and doing well for the moment. Each of those public appearances are calculated for my “on" time. There are so many more hours spent locked in my chair, rigid and expressionless. Or, when I have too much medication in me you may have seen me flailing helplessly, unable to form words. It is a pure act of will to concentrate on anything except this great distraction. My time when the drugs are balanced is precious to me. I am not being rude if I do not see you often. In many cases, it is because my intervals of good time are so short that I just can't get far or do much before I fall off the drugs again.
Parkinson's disease is different for every one of the million-and a half people in this country with it. My Parkinson's is quite advanced (3.5 to 4 on the scale of 5 for most symptoms) for my age. I should not be able to take care of myself, but I still do. It does take longer. I don't do as well at it. Yet it is a point of pride with me that I make my way through the world under my own power as long as I can. Becky is very good at leaving me alone and jumping in only when I really need her. This is especially hard on her. I'm very proud of the way Becky holds up to the stress. I know it is hard on you to be around me as well when I flounder my way through some previously simple task. I know you want to say good things and be encouraging. THANK YOU! Your love and care means the world to me. Just know that I may be feeling good. I may look good. I am NOT better!
Shortly before she died, my sister Bridget said to me, "Kelly, I would rather have cancer, than you Parkinson's. I have to die with dignity. You have to live with dignity for a long, long time." Wow! If you, as friends and family, would like to know what you can do for Kelly, this is it: Treat me with dignity. Do not avoid me, because you don't understand or you don't know what to do. I am still Kelly. The package is not easy to deal with any longer, but I'm still in there. Another thing I learned from Bridget is that giving is not complete unless it is received. I have spent most of my life stubborn, independent, very much "in charge" of my world. Parkinson's has pointed out the futility of that path. I do not agree with Michael J. Fox's statement that Parkinson's is a gift. Maybe To him, but to me it is a huge distraction. This complicates everything. With every muscle in your body affected, Parkinson's takes much of your ability to "do."
My Parkinson's was diagnosed in 1998. I know that it impacted my life at least 3 years earlier. By the time I went to a doctor dopamine production in my brain was pretty much stopped. The disease seems to move more quickly in older folks, but there are lots of younger people with Parkinson's now. Younger people have many more otherwise healthy years to deal with the disease. I was in my early 40s when I started showing symptoms. This is younger than most, but by no means young for "young onset" Parkinson's.
I am now 13 years with "Parky. And, distraction is the word at this stage! I can concentrate on nothing for long. If I lose myself in any sort of task, I find myself "off" my drugs. And it is a long ladder to climb back up. Everything about you affects the uptake of the medication, and its efficacy. Tired, stressed, excited, on the road... Parky keeps each of us guessing.
DBS surgery; doctors don't want folks who will only marginally benefit from this. So they're very selective. I have passed that selection process, and go to Denver last week in July for an on/off study. I must go 12 hours without medication, present myself in clinic at my worst, then climb back up that long ladder (I take multiple pills every 2 to 3 hours around the clock. Sometimes they work longer, sometimes shorter, sometimes they don't. I have NEVER, in 13 years EVER, gone that long without my drugs. I want to know how much the drugs mask symptoms. I just don't want to be there!). After that, I return to Denver for surgical procedures on the 4th, 7th, and 11th. After that there will be even more trips to Denver for "tuning." When properly programmed, the stimulator in my chest will trick my brain to stop. The imbalance of messages that tangle, muscle action. I WILL STILL HAVE PARKINSON'S! However, this surgery "could" return me to my current best function, 90% of the time, with a fraction of the medication. WOW! If not, then we will tread that path as well. DBS will not return my lost dexterity, restore lost cognitive function, memory, and very likely amplify voice difficulties. And, of course, DBS is brain surgery, a procedure fraught with risk of stroke, heart attack, infection. In other words, DBS is the treatment of last resort. I have Parkinson's. It has a crushing grip on me. Without a care, DBS is my last best option
Pat Wellner, PE
807 N. Harney Ct.
Pierre, SD 57501
"There’s folly and foolhardiness on one side and daring and calculation on the other."