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WindsongMoonChild

4-Year DBS Follow-up

491 posts in this topic

What kind of exercises do you do?

 

I saw a study that showed it isn't necessarily exercise but the motion that helps. I've been adding my own motion exercises to what my PT gives me to do, which have more to do with strengthening than motion. Especially for my  hands! Nothing feels better than the motion one's I do, the physical exercises don't do as much. What do I mean when I say "motion"? When they give me hand weights (only 5 lbs) instead of doing just the physical I also start moving my wrists around left, right, forward, backward and rotate in a partial circle. Same with something they call a powergrip web, instead of just doing power gripping I try and flip it around with my hands back and forth. I think for the legs walking is perfect not because of the physical exercise but that you're doing the motion over and over.

Edited by zeke1109

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Let me see now... 

 

I move just about every thirty minutes and, I read the study you are referring to also--I totally agree with it!  I do Tai Chi, I have a stationary bicycle, but keeping "active" (as I have all weekend--I'm fit to flop!!) is, in my view, by far the best approach.  It seems I can't do anything for a protracted period  of time--not walking, sitting, or standing!  So, I engage in one or the other of those things every thirty minutes or so.

 

Been a busy weekend and promises to be a busy two weeks ahead, so if I'm scarce, I apologize in advance!!

 

Kim

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Hi All,

I am a caregiver.   My husband is 53 diagnosed 10 years ago with PD.    He had DBS end of 2012 implanted in the GPI area, not STN, and with normal Activa battery.

 

My question is.     Has anyone anything they can tell us regarding the Activa RC.

His battery is not lasting longer than 2 years, possibly a few reasons, a short circuit at one contact the first year, and higher levels of stimulation the 3rd year, but we are next month going for the 2nd replacement battery and are contemplating whether to have a rechargeable fitted instead.   Aside from the general anaesthesia, the flight times and general fatigue that comes from having these battery changes every 2 years, we felt maybe the RC would be a better and easier thing for him long term.

 

Does anyone have any comments - pros/cons on changing to this rechargeable type versus staying on status quo.  We're particularly interested in the day-to-day use and any difficulties people may have experienced.  More specifically we're wondering about frequency and length of recharging cycles (he runs at about 4.5-5 volts, 180hz and 60 pulse width for his therapy), any "accidents" (i.e., letting the unit discharge too far) and any defects people may have experienced where they had to go back to hospital to replace the battery before the supposed 9 years of service life were over.

 

 

 

Cheers

Woody

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Woody,

 

I don't have DBS but I do have an SCS (Spinal Cord Stimulator). It's the same technology but installed in a different location. I'm a heavy user as my stimulator is on 24/7 and my programs are similar to the one you are running. My voltage is about half of your settings but I cycle through multiple programs within a program group that stimulates both my left and right side. I've had my stimulator for 6 1/2 years and yes it's the rechargeable version. I've been charging twice a week from 2 to 3 hours for each session since it was implanted. Charging is a pain but you adapt and work it into your schedule. It's my Wednesday night and Sunday morning thing. Everyone that I know that has an SCS usually has to recharge every 2 to 3 weeks for a couple of hours. I am a heavy user. My doctor and I thought this thing was going to die last year but it doesn't seem ready to give up the ghost. When recharging, I attach the charge to a belt which is then placed over my battery. I can move about the house while I charge. I have found that the more active I am, the longer the charging session. If you have any questions, feel free to ask. Hopefully someone with a rechargeable DBS will chime in

 

Dave

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Woody,

 

I read your post with interest and, I hope you don't mind, but I decided to share it with Ken Stone, my Medtronics rep.  I sent Ken a copy of your post in e-mail and, today, received a reply.  After apologizing for taking a while to respond (he's been wildly busy here lately) and addressing an e-mail I had sent him (in which I told him that I'm happily in my "sweet spot!") he said this...

 

Relative to providing feedback on the Forum post, I believe it would be inappropriate coming from me. I so wish that the patient would ask to speak with their local Medtronic Therapy Representative. The patient or caregiver can also call Patient Services at (800) 510-6735 and likely get many questions answered.

 

Ken has never steered me wrong and has always responded to my questions in a professional and direct way--so, if it is any help at all, I would suggest a call to Patient Services as Ken advises.  Ask them all your questions--as I feel sure they will be able to give you all the pro's and con's of rechargeable vs non-rechargeable batteries--and anything else you'd like information on.

 

Good Luck to you and, please let me know what your husband decides if you can find time--because I know how busy a caregiver's life can be (and, I mean that sincerely, not flippantly, I promise).

 

Kim

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Gosh, this is a great thread.. I had forgotten the exchange...like I was reading for the first time.

 

Good to hear from you, Kim...I have missed you...

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Good to be back!  Except, I'm not--well, not quite gone, but not quite back, either--I'm on vacation! Woo Hoo!  Looking forward to wading into a good natter when I get back though...

 

NN, how have you and the gang been??

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Hi All,

I am a caregiver.   My husband is 53 diagnosed 10 years ago with PD.    He had DBS end of 2012 implanted in the GPI area, not STN, and with normal Activa battery.

 

My question is.     Has anyone anything they can tell us regarding the Activa RC.

His battery is not lasting longer than 2 years, possibly a few reasons, a short circuit at one contact the first year, and higher levels of stimulation the 3rd year, but we are next month going for the 2nd replacement battery and are contemplating whether to have a rechargeable fitted instead.   Aside from the general anaesthesia, the flight times and general fatigue that comes from having these battery changes every 2 years, we felt maybe the RC would be a better and easier thing for him long term.

 

Does anyone have any comments - pros/cons on changing to this rechargeable type versus staying on status quo.  We're particularly interested in the day-to-day use and any difficulties people may have experienced.  More specifically we're wondering about frequency and length of recharging cycles (he runs at about 4.5-5 volts, 180hz and 60 pulse width for his therapy), any "accidents" (i.e., letting the unit discharge too far) and any defects people may have experienced where they had to go back to hospital to replace the battery before the supposed 9 years of service life were over.

 

 

 

Cheers

Woody

 

Thanks Dave appreciate your reply - very interesting .   I have read recently there are also other companies apart from Medtronics who do long life batteries.. up to 25 years rechargeable. its by Boston Scientific has been out there for years used mainly in Europe, South America and Israel.... not allowed in the States because still in trial amazingly...........   that would be interesting wouldn't it....  I suppose with the battery business being so profitable for Medtronics and hospitals, it will be hard for other suppliers to get in....anyway... again - thanks so much.

 

Thank you Kim as well.  Appreciate your time.  I was more after unbiased opinions from people actually using the RC or non RC activa.   Not so interested at the moment in answers from the actual equipment suppliers as they do have vested interest and have already been down that track.... but thank you for your time and all the best.

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Woody,

 

One thing you should ask when looking at different manufactuers is what their replacement policy is.  I know several people who have  Boston Scientific and were charged an arm and a leg for a replacment remote.  I'll give major kudos to Medtronics in this department.  They've replaced my charging belt 3 times, the antenna on my charger (whats used to charge), and my remote 4 times.  I'm hard on my equipment.  Each time they Fedex the replacement part overnight no charge.

 

Dave

Edited by Daven

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Dave, just curious about your post, since I'm in a 5-year study for the Boston Scientific DBS, which isn't available in the U.S. yet but is currently in the study phase here. So no one would have it here yet except people in the study, and the study provides all equipment free. So were these people who needed BS remote replacements from other countries, or their remotes were for other types of pacemakers, not DBS? Any idea how much they were charged? I'm pretty sure my Kaiser policy would cover most or all of replacement cost after study is over in 5 years, but wanted to check on this anyway. Thanks.

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Appala,

 

Bear in mind this was a couple of years ago and it was for an SCS not DBS, but the two people that I met online had to pay for their remote replacement from BS.  It cost them around $800.00.  They were really ticked because their insurance did not cover the costs.  You can probably contact BS to find out what their policy is and I would also check with Kaiser to make sure they would cover.  This is a question I would have never of thought to ask.

 

Dave

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One thing I would add is, as much as one trusts one's doctors (I hope!), a second or even third opinion (where possible) is something one should consider viewing as obligatory--and, at any stage in the proceedings.  If seeking other opinions offends your doctor?  That's your first sign that you need another opinion!

 

Kim

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For your information, mine was replaced twice ; the first battery lasted 6 years and 8 months; the second lasted 7 years and 3 months. I was told the new one should last around 8 years. But this is no way a general estimate. It all depends on the amount of power required by your parameters.

 

take care,

 

Mireille

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I have a BS SCS.  I once thought my charger was lost.  I contacted BS and 3rd party contacted me as some mediator to get with insurance, etc.  I don't recall the details, but the insurance didn't cover it and the 3rd party talked to BS ; who just gave me one.  Well, by then,  we found it buried in an odd place.  I called BS to return it and they didn't want it!  So, now I have an extra charging system, at no cost.  :huh:

 

A year later, my pain management doc went to his own practice and didn't use BS anymore.  Now, I am looking at a Medtronic DBS and I heard good things about their SCS.  Thankfully, I am getting the VA to do this.  All my good years were given to them (and some not so good in last 3-4 years), so I think that is fine. 

Edited by MurrayPD2

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