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Update to meds

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Saw my MDS yesterday, along with the Speech Therapist.  I wasn't supposed to see her again until mid-January, but I've been having problems with being dizzy when standing, been having a hard time sleeping sometimes, and meds have been wearing off and less effective overall.  Plus, following my neuropsych eval back in April she had said at my July meeting that she wanted me to see the speech therapy folks due to the issues with word finding.

 

Overall, not terribly eventful, but I did get my Rytary increased from 3x3 to 3x4 per day.  I had been taking them at 8/2/8 so a six hour interval.  I'll now be taking them, I think, at 7/11/4/9 which will give me a 4 hour interval during the work day, but I'll stretch it to 5 hours in the evening.  We will see how that works out.  For breakfast it might actually work out better.  I seldom eat at home before going to work, so taking it at 7AM will mean that by the time I'm getting peckish at work I'll be at a good time to eat.  Plus, the 8AM timing was tough on Wednesdays since I a standing teleconference with the India team from 7:30-8:30, and I'm usually in my boss's office for that call (boss and an India team rep in the office too), which means I either take meds 30 minutes early or late those days.  This should avoid that issue.  I think 11AM won't interfere too much with lunch since I can just wait until noon to eat, which I do anyway probably at least 3 days a week.  Meds at 4PM likewise should be no problem with food since I rarely eat dinner before 6PM, and by 5PM I'd be good to go.  The 9PM one might occasionally be a problem, as sometimes we don't eat until 7-8PM or so.  But that will still be better than the 8PM med time from before since if we ate anytime before 7:30 I'll be OK.

 

For dizziness she wants me to work more on hydration, including adding more electrolytes.  We'll see if that cures it.  Hope so.

 

For difficulty sleeping she was recommending Sleepytime Tea, or chamomile tea/herbal supplements, and/or melatonin.  She also thought the additional Rytary would help.  Thankfully she was in agreement that anything stronger was uncalled for.

 

The speech therapist had me do some additional tests for word finding.  One of the things she had was a book with pictures and I had to name the object.  Started off great, then got to some that I really struggled with.  The harmonica, beaver, paint, and couple others I'm not recalling I really stumbled over.  The picture of the paint board I could never come up with the name until she flipped it over.  Then she had me do the "every word (not proper nouns or different forms of the same base word) starting with the letter S" in one minute.  Struggled with that about like in the neuropsych eval.  

 

Got some exercises from the speech therapist to try to help out with that.

 

As I mentioned in a DBS thread, I stated that I assumed at this point we were still several years away from even beginning to discuss DBS.  She agreed with that, and said that even if I was getting close to that point, which I'm not since the meds are working well and I don't have any dyskinesias yet, that she would recommend waiting if possible for another 2-5 years.  There are a ton of advancements coming down the pike for DBS that will make it less invasive and better overall.  Currently battery packs and controllers are implanted in the chest or abdomen in operations that, at least in the USA, are typically done under general anesthesia.  Average life for the battery packs is 5 years, so if you have DBS done at, say, 45, you're looking at an expectation of 9 total battery packs if you live to 90, so the initial pack plus 8 replacements.  Some will need more, some less depending on a lot of variables.  But even you only need 5, that's still a lot of surgeries to replace it.  One advancement she said is in development is a battery that can be placed under the scalp, and it sounded like it was intended to last substantially longer, possibly long enough to never need replacement in your lifetime.  Plus, with now I think 3 companies with FDA approval for DBS systems (IIRC they're Medtronic, Boston Scientific, and St Jude) they are all working on improving leads, lead placements, control systems, programming, and so on.  We are likely in an inflection point for advances in DBS such that waiting, if tolerable, is likely the best plan.  Eventually things will taper off in terms the rate of advancements.  I'm hoping that we'll be in that phase of the development curve by the time I am ready to seriously consider DBS. 

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Hi Stump,

Thanks for the update. The word-finding issue sounds a bit troubling--interested to hear what the exercises are and how helpful you find them. I lose a few words from time to time--post-dx, it's hard not to wonder if it's a PD thing.

Shortly after dx, I participated in a research study that included a battery of cognitive testing, two days worth IIRC. Was able to share results w/ my MDS; we figured it would be a good baseline for comparison down the road.

Clinical trial I just completed included a short cognitive test about every visit--a couple of drawing tasks, some memory stuff, name-the-pictures like you mention, and the 'every noun starting with the letter _ in one minute' thing.

Really hate that last one--I assume I did well enough at it, as my MDS never said otherwise, but feel pretty incompetent under that kind of pressure, regardless. Gets the tremor going, too.

Re: DBS. It may be a few years off, but closed-loop machines seem very promising. Basically, the stimulation is continuously modified, in response to what is going on in the brain. Some details here (more specific to cortical stimulation than deep brain, but covers that, too):

http://www.sciencedirect.com/science/article/pii/S1388245714000376#b0170

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ShopGuy - when I get the papers out of the car I'll post up that info.

 

FWIW, with the increase in the meds I will say that I already feel less agitated and anxious.  Hopefully that continues and the tremors get better controlled too.

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Sounds like some good changes, I know when I added a 50/200 C/L ER at night just before bed that helped me sleep better. I woke up with less stiffness and my feet hurt less in the morning.

When you switched to the Rytary did you notice a big change from the regular Carb/Levo? Do you feel it is working better?

Thanks for any responses.

 

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Away from home for Thanksgiving, so posting the speech therapists recommendations will have wait until Sunday or Monday.

 

Adam - Main difference when I switched was that some side effects, like daytime sleepiness and some nausea when taking the meds were reduced or eliminated.  The extended release formulation spreads out (and reduces the overall amplitude of) the spike in levodopa levels, and also smooths out the drop off at the end of the dose.  In changing to 4x per day I'm doing better as it was previously wearing off and generally leaving me feeling under-medicated at 3x per day.  

 

I know some folks have had some difficulty dialing in dosage and timing when switching to Rytary.  I'd say that, overall, that hasn't really been any issue for me.  When I made the switch about 10 months ago now I did titrate up on the Rytary a bit.  My MDS had me start out at 2 caps 3x per day after stopping the IR with no taper (works because they're the same medication, and it wasn't much of a drop in overall effective dose).  Then she had me go to 3 in the morning and evening and 2 mid-day which was the equivalent to the schedule I was on with the IR.  I held at just 2 capsules for longer than she recommended as I wanted to see if I really needed more than that.  I did, so I went to the 3/2/3 schedule.  That still left me with sub-optimal results mid-day, so I went up to 3/3/3.  That worked well for quite a while, but I think some progression occurred as I felt the need to go up on med levels over the last couple of months.

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I had major issues with word finding (among other things) early on in my disease.  My first Neuropsych test put me right on the border of MCI and dementia.

MDS put me on Exelon 9 mg/day.  Its typically used in LBD and Alzheimer's, but has been shown to help MCI.  Recently, I showed major improvement on my second neuropsych test. I'm giving the credit to Exelon.

You might ask your Neuro about Exelon.  Its can have a bunch of nasty side effects, though.

I've been struggling with the low blood pressure thing too. What's worse,  is that I normally have high bp.  MDS advised to discontinue BP meds and drink lots of water. 

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