Jump to content


  • Content Count

  • Joined

  • Last visited

  • Days Won


WindsongMoonChild last won the day on February 23 2016

WindsongMoonChild had the most liked content!

Community Reputation

487 Excellent

About WindsongMoonChild

  • Rank
    Advanced Member
  • Birthday 09/03/1958

Profile Information

  • Gender
  • Location
  • Interests
    Tea parties. Lovely things. Lovely people. Human connections of all kinds.

Recent Profile Visitors

1,482 profile views
  1. WindsongMoonChild

    DBS Update - 8 years

  2. WindsongMoonChild

    DBS Update - 8 years

    It is. But, I guess the only option we have is to place our trust in our surgeons and then, jump in feet first! Good Luck, and have a great Holiday Season!
  3. WindsongMoonChild

    DBS Update - 8 years

    I had absolutely no one to turn to for advice in the early days except my Medtronics rep and, if I've learned anything, it is that we are all so different that others can help, but by far the best teacher is our own quiet mind. Over time, you will gain experience with your DBS and, the trick is, learning to listen to yourself--before you listen to other voices. Spouses, friends, family all mean well, but even your doctor doesn't know what it's like to have this thing in your brain and controlling the movements of your body, so learn fairly early to trust yourself. Good Luck!
  4. WindsongMoonChild

    4-Year DBS Follow-up

    My battery was only just replaced in October of this year. It had lasted right at 8 years.
  5. WindsongMoonChild

    DBS Update - 8 years

    Odd, isn't it, how time has a way of slipping by, like a rambling river, winnowing this way and that, barely noticed at all, until, one day... Our skin is wrinkled, our shoes are soaked through--and, we have little or no idea how we came to be up to our shins in unfinished business? Then, of course, there is the passage of time and tides as we Parkies know them... A day takes a week; seems like a month; could have been a year; perhaps, was merely a minute--but it hardly matters, since we ourselves do not even know. And, so it has gone with me. Time. Washing past my senses like the Falls of Niagara, until now, I stand here, dripping apologies for my continued silence and hoping, in some small way, I shall be remembered. This time last year I was preparing for a visit from my Mother. I shall post after her visit, I told myself. She was here for a month and, after that, well... the water of time continued rising, unabated, until here I am, preparing for a visit from my sister, her husband, and two grandchildren in January. The whole time I was preparing for Mother's visit I kept thinking, battery, just keep going until after her visit, that's all I ask! My wish was granted. Then, after twenty years with the same company, my husband changed jobs. My internal dialogue changed, too. Just keep going, dearest battery, until... well, until we are sure about the job! Once again, I got my wish. Then, in early October this year, when I was just about to start entreating my beloved battery to give me until January, I checked my levels one day and, there it was: The "Magic Number" I had been told to watch for. Within two weeks: ERI. Elective Replacement Indicator. I texted a picture of my settings to Ken at Medtronic. Ken set the ball rolling and, on October 27th, I was admitted to Vanderbilt for surgery. It was a surprisingly simple procedure (although certainly not cheap--eight years earlier, the DBS surgery, complete, was about $150K--replacing the neurostimulator (battery) was right at $77K) with surgery taking just fifteen minutes and, recovery, two hours. This time, I healed very quickly (as compared to the original battery placement) and, the sutures held for a month without dissolving, so I removed them myself. The incision is healing nicely and the redness around it beginning to fade. I saw my Primary Care doctor for a follow-up last month and she tells me I am healing fabulously. The same day, I had a follow-up with my Neurologist and, he seemed to think I "looked great," too. A few days ago, I was talking with my Medtronic hero, Ken, and he mentioned something very interesting and it was information that had, somehow, escaped me. Let me see if I can regurgitate the gist of it... There are two specific types of DBS settings. 1. Constant Voltage Mode. And, 2. Constant Current Mode. My DBS is set on Mode 2, Constant Current. This, I knew. What I didn't know is that I am a rare case--well, at Vanderbilt Hospital, anyway. Ken told me that, as a wild, wild guess, he'd estimate that about 95% of the Vanderbilt DBS patients were on Constant Voltage Mode. That put little ol' me in the remaining 5% group. Hmm... Evidently, I have been responding to DBS just a little differently to most patients since the very beginning. For one thing, I had no "honeymoon period" at all. Then, for another, I was plagued with rampant dystonia for quite some time. Eventually, I switched--to one Neurologist. The biggest problem I had at the time was, too many cooks in the kitchen and each one was clearly loathe to step on the other's professional toes, which, of course, left me under treated and frustrated as all get out (to use the Southern vernacular). Dr. K. suggested I would do a lot better, in his opinion, if I were switched to Constant Current. So, he set up a "B" setting (so I could switch back if in trouble) and, away I went. Now, this change took some time to tinker with; making small slow, slow, slow changes to meds and adjustments to my DBS but, eventually, I was weaned off Sinemet altogether and when I had my battery replacement surgery in October, they removed the old setting completely and gave the new setting the "A" assignment. Now, why is the Constant Voltage Mode/Constant Current Mode thing of any significance? Well, I think it's because my response to DBS is quite different to the vast majority of DBS patients--because, if it wasn't, I'd be on Constant Voltage Mode, too, just like the other 95%. This is neither a good thing or a bad thing. It just, "is." And, because it is, one should be very careful in comparing other patients results with mine. After all, if my settings were the "best" option generally, we'd all be on it. So, symptom-wise, where am I now? The dystonia is definitely down to significantly less than a dull roar. My speech can tend to be a little slurred occasionally, but it's mostly when I'm tired, or unwell. Fatigue has been a continuous struggle for me. I was prescribed ProVigil which made a HUGE difference, but I'm in a pitch battle with the new insurance company because they are refusing to pay for it (it costs $600 for a thirty-day supply). I know I should get in 10,000 steps a day, but I average about 6,000. The Blue Hole of depression returned, back in August, so Dr. K increased my Cymbalta to 60mg. I am doing much, much better now. My balance is getting progressively worse. I have had one fall this year. DBS does not correct balance issues, so I guess I'm in a holding pattern--just waiting to see when I become unsafe. Well, that's all I can think of right now and, I guess I should be getting some sleep! Goodnight my fellow travelers on the Parkinson's Pathway... May your tremors be few and, triggered only by lust!!! Kim Oh, P.S. Just a general FYI, for anyone new to the battery replacement thing... If you decide to schedule surgery too soon, your insurance company may just decide not to pay for it. The ERI symbol, I was informed, pretty much needed to be on the screen before the surgery--which would seem to make no sense because it means "Elective" Replacement Indicator, after all. But, when my battery hit The Magic Number Ken had told me to let him know. I did and, it took about a month to set the surgery up and, by then, the ERI was there. I was a little nervous for a while because I don't take any Sinemet and a switch off would mean BIG trouble for me! Anyway, something to consider when you time comes for a new battery.
  6. WindsongMoonChild

    Tongue Biting

    Thank you!
  7. WindsongMoonChild

    Tongue Biting

    I have PD and have had a DBS for eight years (had my neurotransmitter replaced for the first time two weeks ago) and, over the years I have been prone to biting my tongue--in my sleep, while eating, and even when talking. A friend who has PD and also a DBS was hospitalized yesterday as she was found at 9am, with blood all over her face, her pillows, sheets, and even the wall--mercifully, she was still breathing--911 was called and, at the hospital, it was found she had clamped down on her tongue at least three time. She was intubated and put on a ventilator to protect her airway. She has, as of today, made it off the ventilator and out of the ICU and has had scans to detect seizures (no results as of yet). The manufacturer of her DBS says they have never heard of seizures associated with a DBS unit. So, my question is this: Is it possible (for a Parkie) to clamp down on one's own tongue several times while profoundly asleep and either stay asleep, or go back to sleep?
  8. WindsongMoonChild

    Overnight stay denied!

    I had surgery at Vandy two weeks ago to replace my neurotransmitter (battery) and, as before, it was a day surgery. If I can be of any help, feel free to message me and I'll be glad to share my experiences! Kim
  9. WindsongMoonChild

    New Medtronics Web Site

  10. WindsongMoonChild

    The Time Has Come

    Haven't heard anything on longevity (but, I will certainly ask Ken next time I talk to him), but I have heard that the next gen batteries will connect to a remote that is more like a smart phone--it won't be necessary to hold it to your chest to monitor it or make changes. LOL... I'd just be happy, at this point, with a remote that doesn't have buttons that can be accidentally pressed just by picking up the case!!
  11. WindsongMoonChild

    The Time Has Come

    Yes, ESPECIALLY for me, since I take no Sinemet at all now... A few months ago, I accidentally turned it off and, ooohhh boy, did I know I'd done it within seconds! It was quite sobering, really, to see the "real" me, sans DBS backup. Thank you for the well wishes, I'm confident I'll be in good hands.
  12. WindsongMoonChild

    The Time Has Come

    Hello Everyone! A drive-by update on my current DBS situation... I have a pre-op appointment at Vanderbilt Medical Center on September 29th and battery replacement surgery scheduled for October the 27th. At the time of my DBS surgery, my surgeon told me I could expect 3 - 5 years use out of my battery--as of July, I began my 8th year with it--I am content. So, do I have any useful information for you? I think I might... About two years ago, I asked my doctor when I would know for sure when it would time to think about scheduling battery replacement surgery. At that time, my doctor told me to give plenty of notice when my battery was "getting close" to needing replacement, in order to give everyone (the hospital, him, Medtronics, et al) time to get me scheduled without the battery actually going dead. (Especially as I am still taking no Sinemet and, a sudden stop could be quite a jolt to my harmony!) But, how close is close? I asked that very question, and he told me to let him know when the remote voltage reads, "Ohh, 2.70" (I have a Medtronics unit) and I should be fine. Then, I spoke with my Medtronics rep, Ken, who gave me some other advice... Caution, of course, is good--after all, no one wants to find themselves suddenly out of power and jerking around all over the room! However, there are definite downsides possible to scheduling battery replacement a little too early. The main two are: 1. Replacing the battery too early, out of an abundance of caution, can mean "cheating" yourself out of battery time--and, who wants surgery every seven years, when they can have it every eight?! 2. (And, perhaps, more importantly:) If you schedule battery replacement surgery before the ERI icon appears on your remote (for a Medtronics unit), your insurance company may choose not to pay for the surgery, considering it an "elective," procedure rather than a "necessary" one. My battery reading was 2.70 over a year ago. Then, when I contacted my doctor, hospital, and Medtronics rep the first time about a replacement (a week ago now) it showed 2.60. But, these things are never cut and dried or neat and easy though, are they?! And, thus it is with a DBS battery. How simple and convenient it would be if the battery ticked down one increment at a time, giving a clear delineation between the moment when a replacement is required or before, when it is definitely not! Instead, the voltage staggers its way down, one day (or, minute!) showing 2.60, the next, 2.63 or, even 2.65. What to do? What to do? Well, as is my wont, I immediately texted a picture of my DBS remote to my go-to guy Ken at Medtronics and, he told me not to panic, I still had enough time, but I must schedule my appointments right away! "But, the ERI icon isn't showing yet!" I texted back in a panic. "Maybe not, but this just means you still have time to consult with your surgeon and get any preauthorizations you need, etc. and, by the time the surgery date comes around, it probably will be, or very close." As usual, he was right. At the end of the day, PD is a "snowflake disease" and, so, too, is DBS. We all use voltage at a different pace, have different settings, and, therefore, place differing demands on our DBS battery--we will then, of course, also require battery replacement on an individual schedule. Ken gave me an estimate of how much time he thought I had and, I'm going to be just fine I believe--insurance companies will often give a little fudge room, but perhaps not a whole year! I think that gets it for now, I will of course see you on the flip side with any new info. I may have to share, any new settings I have, etc, etc. Regards, Kim Oh... The next generation of batteries is apparently still 3 years away, so looks like this time around I'll have the same ol' remote that tends to switch on in my handbag and run my AA's down at an alarmingly expensive rate!
  13. WindsongMoonChild

    New Medtronics Web Site

    Here's my opinion, for what it's worth... Having a DBS in one's brain, is somewhat akin to being implanted with a foreign language chip (if such a thing were possible, of course) and, then, trying to converse with the surgeon who put it there in a language he is very familiar with, but fact is, this new language is not his native tongue. Add to that, it's not your native tongue either! So, now we have two people conversing in two languages (let's say, Russian and English) and one understands both perfectly, but separately, and the other, understands one perfectly, but the other... well, not so much. In fact, the surgeon understands how to implant the language chip, what the language chip does, and all manner of nuances the language chip has, except... He has absolutely no idea what it feels like to speak in fluent Russian while trying to make sense of it in English. He does not know why the new language chip works--enabling you to suddenly speak in Russian (although, he has lots of very good hypotheses)--it just does and, frankly, the benefits of being multi-lingual outweigh the risks of only being half understood or not being understood at all. So, here we are, able to speak Russian, but not able to understand it completely! We have been blessed with a genius who can gift us a second means of communication with our bodies--sorely needed, because we are clearly not communicating properly on our own--but, for all his genius, he does not know what it feels like to speak two languages at once, nor how to fully interpret what we are saying when we do. We try to convey our meaning, but the word we are looking for comes out in an obscure Russian tongue that none of us fully understand! The end result? Well, like many things in life, DBS programming is a lot of science, but it's an art, too. And, it's complex art. It's particularly complex because the scientists who program it need to learn the art of listening to their patient, who is now speaking in a foreign language they have fluent use of, but cannot completely interpret for themselves, much less explain what it is trying to say. For their part, the patient, needs to learn the art of listening to the new language their body is speaking, without over or under reacting to a new phrase or word that seems familiar but, in truth, is entirely foreign. The patient also needs to understand that the doctor can speak multiple dialects of your new language, but must figure out first of all, which one you are using and, then speak to you in a pigeon language of his own that you often find difficult to understand. And, all this, takes place inside one's brain and body! Is it any wonder it takes time to sort through everything and learn the scientific art of communicating in both mind and body with ourselves, our surgeons, and our neurologists? Learning to speak this new DBS language takes time, patience (on steroids!) and, a healthcare partner you "click" with because he or she listens, listens, listens and, perhaps more importantly, understands that you and you alone speak this new language and you are an individual work of art. Even if he can adjust the speed at which you speak, the tempo, even moderate the tone, or change some of your vocabulary, he cannot feel the nuances of this totally new language on your tongue, so he has to be open to your interpretation of things, just as much as his own. In conclusion, then, I'd say it's trial and error, trial and error. But, for most of us, it's worth it in the end. We have to remember, we are fighting a progressive, degenerative, neurological disease that is hell bent on having its way and, we must be realistic in seeing Deep Brain Stimulation as what it is: A Treatment. Not a cure. And, because it's a treatment, it may require continual maintenance and adjustments--but, until there is a cure, I'm game to keep trying! Kim
  14. WindsongMoonChild

    New Medtronics Web Site

    This just in: Please have your friend call Medtronic Patient Services and ask them to find a new DBS Programming Neurologist in the area. They have the ability to look for possible other providers in the area in our system. Or, ask them to please have the SF Medtronic DBS Rep call him. He will have to make the request and then wait for the local Rep to call back. Patient Services cannot provide a Reps contact information. Patient Services can be reached at (800) 510-6735 Monday to Friday during typical business hours. Hope this information helps.
  15. WindsongMoonChild

    New Medtronics Web Site

    Thought I'd share this... But, if you've already heard about it, never mind!! http://medtronicdbs.com/why-dbs/resources-support/index.htm