Parkinson's Disease Tulip


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Old 03-21-2010, 07:30 PM #11
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Steve, you seem to be getting a paradoxical boost in levodopa effectiveness with protein, whereas one would expect to see a slowing of effect if the amino acids from the digested protein are simply commpeting with the drug at the transport sites into the brain. I can't expain it by any biochemical mechanism that I know about unless there is some kind of synergy between transport of levodopa and something else (another amino acid?) from the ingested protein.
I personally do not experience significant interference in symptom control between a normal meal and L-DOPA meds, even when taken within the same hour.
Another mystery!!
I hope it continues to work for you.
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Old 03-21-2010, 07:48 PM #12
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Originally Posted by RLSmi View Post
There is no doubt that we have a tiger (or maybe a devil) by the tail. It seems prone to torment us more just when we think we have solved the meds puzzle. Since day 1 I have meticulously kept the sinemet dosage just high enough to avoid the worst symptoms, titrating up very slowly over the years. I am still on a very consistent DM regimen also, and am still progressing, but very slowly. Have you given up on DM? My progression shows up if I stay up late (past 11PM) and when I get up in the morning. Lots of shuffling. That responds well to my first meds, one regular 25-100 and one 50-200 CR. In less than an hour I'm ready to walk the dog for at least a mile. At 2:30 or 3:00 PM, one 25-100 CR and one 50-200 CR carries me up to about 10:00 PM.

Go slow with selling the boat! Spring is coming. I was sorry to hear about that wicked nor'easter up your way. Hope your house and trees stood up to the gale. We have already started dodging tornadoes down here.

best regards, Robert
I havent taken DM in quite a while, and stopped because I seem to be progressing at the same rate as I was pre-DM..It seems that it did give me a honeymoon period for a while

We survived the nor'easter..Got 5" of rain though
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Old 03-21-2010, 07:50 PM #13
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Steve, you seem to be getting a paradoxical boost in levodopa effectiveness with protein, whereas one would expect to see a slowing of effect if the amino acids from the digested protein are simply commpeting with the drug at the transport sites into the brain. I can't expain it by any biochemical mechanism that I know about unless there is some kind of synergy between transport of levodopa and something else (another amino acid?) from the ingested protein.
I personally do not experience significant interference in symptom control between a normal meal and L-DOPA meds, even when taken within the same hour.
Another mystery!!
I hope it continues to work for you.
What is strange Robert is, carbohydrates completely null and void my meds
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Old 03-21-2010, 07:54 PM #14
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Hello Steve I haven't posted in quite while but when I saw your post I had to respond. We started our journey about the same time 8 years ago. I too am at that point where I am considering DBS, just dont' know what to do next. Maxing out on Sinemet and still having dystonia, sleeping only a few hours at a time. Now the Dr. has me trying Clonazapam. I too don't know what to try next. Perhaps you may be right and it is time to gradually taper off some of these meds. I am walking the same path and will be watching this post to see how you are doing. You are not alone, I am walking right beside you, you just can't see me.
Good to hear you are still hanging in there

I was taking Clonazapam for sleep..now I take Ambien because I built up a tolerance to Clonazapam, I found it was better to switch meds than to take more
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Old 04-01-2010, 05:04 PM #15
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I think I know what the problem was..Three med changes in a short period of time, and I think what really screwed me up was when my insurance forced me to take Comtan and Sinemet seperately, vs Stalevo..I never had dyskinesia untill I did that..Now that my neuro told the insurance co that the mix of Comtan/Sinemet didnt work, and got Stalevo approved, Ive been doing alot better..I dont have off periods untill after 9:00 at night, and they arent as bad as they were..I finally got three consecutive nights of sleep for a change, and 95% of the dyskenisia, and the dystonia is gone..I just get a little inbetween doses if Im late taking my meds

One would think taking two pills, instead of one with the same drugs would be the same, but they're not..Not for me anyway
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Old 04-01-2010, 06:12 PM #16
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Steve I guess it is what your body is accustomed to, and copes well with that counts, and that is different for us all.... so glad that you got the stalevo approved and you are feeling better, and your meds are working for you again. Oh, and it is great to have you back posting, you have been missed...

All the best for a good holiday,
Lindy
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Old 04-01-2010, 06:22 PM #17
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I think I know what the problem was..Three med changes in a short period of time, and I think what really screwed me up was when my insurance forced me to take Comtan and Sinemet seperately, vs Stalevo..I never had dyskinesia untill I did that..Now that my neuro told the insurance co that the mix of Comtan/Sinemet didnt work, and got Stalevo approved, Ive been doing alot better..I dont have off periods untill after 9:00 at night, and they arent as bad as they were..I finally got three consecutive nights of sleep for a change, and 95% of the dyskenisia, and the dystonia is gone..I just get a little inbetween doses if Im late taking my meds

One would think taking two pills, instead of one with the same drugs would be the same, but they're not..Not for me anyway
It's great to hear that things have smoothed out for you, Steve.

I worry about how the current flooding might be affecting you. Do you still have your boat?

Robert
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Old 04-01-2010, 06:26 PM #18
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Hi steve..

Are you and your posessions ok? Rhode Island looks real bad .

and stalevo....it is so outrageously expensive. I'm doing well on it - my doctor gave me samples and today i filled the first prescription - and smacked against another wall. It's out of control - outrageously jaw dropping price.

well that just makes me want to race the next treatment to the finish line doesn't it you?
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Old 04-01-2010, 10:01 PM #19
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My meds wore off an hour ago, and Im a little sluggish, but I am not that bad at all..nothing like I was a few days ago..When my meds wore off I was almost paralyzed..I couldnt drive when I was in that condition, and wouldnt take the chance..It is the worst thing Ive ever felt in my entire life..I got to the point, that I feared what was going to happen inbetween the next dose

Robert..

Thankfully, I didnt lose anything in the flood..I live on the higher ground here, the water ran off towards the rivers..I got a half inch of water in the cellar, that was it

I still have the boat..Havent been out in a while though


Paula..

Im ok..It was strange because Ive never seen a flood before..The last day it rained, the ground wouldnt absorb the water anymore, and I saw rivers of water draining from places Ive never seen it drain from before

It was the first time in Rhode Island history that they cancelled shcool on account of rain

Yes, that Stalevo is some expensive!..I get some from the Rx, and the rest samples from the Dr

Speaking of cost, there's finally a generic Mirapex on the market, and it is as expensive as the brand name!!!..Dont get me going on drug costs!!
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Old 07-18-2010, 07:36 AM #20
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I have asked myself this question so much myself lately and I want to share my experience if it will help anyone. My 79 year old mother has had PD for over 20 years and has always shown a slow progression with very few of the major symptoms that I read about. 2 years ago, she went to a PD clinic for treatment rather than a local neurologist. He began her on a sinemet cr regime. She began with 2 25-100 per day and has gone up from there. About a year or so ago, she started into a rapid decline and they begin a more agressive dosage to stop "wearing off". Anxiety began to happen, more weakness, tremors and stiffness. Currently they have her at 9 50-200 cr and an increasing dosage of a half of a pill for 8 weeks until 13 total pills 9x a day.
In December they started treating her anxiety with Celexa and more Klonopin. It conntinued to worsen so switched to Remeron with even more severe attacks. I was not involved with my mom's treatment, we have two nurses in our family and they went to the doctor with mom and handled the pill dispension boxes. Finally after I continued to question this treatment and 3 weeks ago they almost had to put mom in the mental ward of the clinic for evaluation because she was in a " severe agressive parkinson's attack" I had enough and insisted to talk with the doctors about taking her off some of her meds. Because I questioned 2 of the "best" parkinson doctors. My nurse sister in-law handed me the meds and said "here you go since you are now handling all mom's medical issues, you take care of this." So July 1st began a new phase for both my mom and I. My five older siblings and their spouses are waiting in a disgusted holding pattern for "little sister's" desperate attempt to try to "help" mom. I know this is getting way to lengthy, but the main point is, so far it is the best thing that has happened to mom in about a year. Time will tell if it proves successful. I have used the internet to thoroughly research her meds and used forums like this to try to find any similarities to what mom had. I have just completely removed her from remeron because I insisted she was having a bad reaction with this.( dr. okayed this "reluctantly". Switched to Ativan from Klonopin ( it takes ativan 10 minutes to see results vs 45 min- 1 hour for klonopin). Small doses of this has also proven to reduce her tremors significantly. I have slowly begun to reduce her Sinemet Cr and the inteval time accordingly. Her anxiety has become totally controlled with ativan and the accurances minimized to one or two a day. A few unexpected results have shown up already which are huge for her. Incontinance is gone and no more depends! Sleeps through the night only getting up once to go to the bathroom, her appetite has returned, she stays up later in the evenings, and she again can go out for breakfast and dinner with my dad and even has begun to take more care with her appearance( make-up and dressing nicer) I say she acts more like she again can enjoy living and not preparing for dying. While I do not at all recommend going against your doctor, for me a desperate situation called for desperate measures. I did not do it lightly and spent hours and hours in research checking the best methods to even attempt this. I hope she continues to improve and i can find a good maintaince level that she has the most comfort with. I asked myself when I began this too " When does the treatment become worse than the disease? ( only my oldest sister has in any way shown cautious encourement and support so far )
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