Parkinson's Disease Tulip


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Old 07-10-2016, 09:55 AM #11
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Default Eating/Digestion/Laxative?

Quote:
Originally Posted by bluesking View Post
Jim - Thanks for all the info! It's very beneficial to get a different perspective.

Speaking for myself, I just can't get food to work with Rytary. And if I miscalculate, I'll be miserable, potentially, for 5-6 hours. And it threatens my ability to drive, which in turn threatens my job. I've reached the point where I skip breakfast and lunch altogether, and take advantage of a large, satisfying evening meal that I don't have to worry about before sleep.
Thanks Bluesking. Interesting that we both do better with no food for the day. And then we eat at night where we don't need so much to call on our resources to function minimally.

Now look at the post from RLSmi and his reference to a new study re laxatives and absorption. Can eating (or not) and pooping be the answer to at least a small part of the problem?

Jim
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Old 07-10-2016, 10:01 AM #12
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Quote:
Originally Posted by RLSmi View Post
Jim,
You would do well to check out posts by GerryW and John t back in May 19 and 21. The thread is one started by GerryW entitled "Who would have thunk it?"

The references in those posts are to important recent work done by the research group of Sylvia and John Dobbs at King's Colllege, London. The entire work was published in the prestigious British Journal of Clinical Pharmacology, available in the reference in John t's post under the title "Quantifying rigidity of Parkinson's disease in relation to laxative treatment: a service evaluation."

This is the same group with whom our late forum member Ron Hutton worked for several years.
Robert
Thanks RLSmi. I am looking into this. I know I qualify with the gut and constipation problem. What about a cleanse? Wouldn't that improve efficiency of absorption if the works were plugged up?

Just a thought.
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Old 07-10-2016, 02:55 PM #13
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Jim, your reply to soccertese just now, relating the bloating and vomiting episode 5 years ago and a doctor's description of an upper GI obstruction suggests that you are dealing with more than simple constipation. If it were me, I would make an appointment with a good gastroenterologist and determine whether that may be a significant factor in what you are struggling with. I'm doubtful that a "cleanse" would be adequate for solving the problem if an upper GI anatomical obstruction is present.
Robert

Last edited by RLSmi; 07-10-2016 at 06:18 PM. Reason: added text
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Old 07-11-2016, 07:06 AM #14
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there is some speculation backed up by at least 1 study that heliobacter bacteria can reduce the affect of l-dopa, taking antibiotics helped, but i think another study showed no connection. the point i was making was get back to square 1, if the first dose of regular 25/100 in the morning works, and i assume you have figured out what size that dose is, then it's likely not your digestive system and it's just the complications of advanced pd and/or another medical condition, maybe pre-diabetes? just my opinion. i'm rarely constipated but when i am C/L sometimes doesn't kick in.

i may be wrong but i think tea lessens the affect of C/L for me in my advanced stage, tea has amino acids. if i'm at the point that i have no reserve L-DOPA in my brain and i depend 100% on l-dopa and my brain is destroying L-DOPA as fast as it gets into my brain, then even a tiny amount of interference in absorption can have a major affect.
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Old 08-05-2016, 06:49 AM #15
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Default Quick Update

I just wanted to provide a quick update.

Overall I continue to experiment. I now find that (2) 23.75/95 Rytary starting about 6:00 in the morning repeating every 3 hours along with one 81 MG aspirin is my routine. I discontinued the 300 MG Ubiquinol (reduced form CoQ10) a few weeks ago and began Amantadine two capsules 9:30 am and 3:30 pm. Now having much better results but interfering with sleep and produces slight tightness in my head.

More later.

Jim

Here is my recent Neuro email:

To:James
From:LEE , D.O.
Received:8/2/2016 5:43 PM PDT
Hi Mr. G,

Probably a mixture of medication side effect (since you're back to the higher amount of Rytary) and operating on only a few hours sleep.
You'll probably do better after a night of sleep.

Lee


----- Message -----
From: Jim
Sent: 8/2/2016 3:46 PM PDT
To: LEE D.O.
Subject: Problem

Hi Doc,

Two weeks with Amantadine and things were going well. Then last night I went to bed at 10pm and woke up at 2 am. Nothing wrong-just couldn't sleep. 4am ate a Pollo Loco chicken thigh. 5am started Rytary (2 every three hours)and showered. 6am sitting at my computer II became aware of buzzing in my head, got faint and thought I might pass out. Tried to remove headphones(wasn't wearing any) got up and went to recliner. Buzzing only lasted 2 seconds, no loss of consciousness. Not dizzy, just lightheaded.

Went to urgent care. BP ok, blood sugar good, no weakness, vision/speech good. Dr. said probably medicine related. Still have light headed feeling.

Lack of sleep? Meds?

Jim
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Old 08-05-2016, 07:56 AM #16
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i tried 100mg amantadine for a few days and then quit, couldn't sleep and lost my appetite. just my experience, everyone is different and one could make the argument that i should have given it more time. just wasn't that bad off - no dyskinesias, off times pretty predictable and due mainly to eating protein - so didn't have the incentive to give it more time. i know many people that do just fine on a cocktail of amantadine, requip and stalevo.
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Old 08-13-2016, 12:23 PM #17
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Jim -- buy a home blood pressure monitoring kit and keep a record. I had always been told I had high blood pressure, but turned out to be white coat syndrome.

Last few years I was told "you have low blood pressure" then "you have high blood pressure". Sheesh... just seems my BP likes to vary all over the place. Sis was visiting, retired Hospice RN, and with me post lung biopsy. Sure enough sitting there she got to watch it drop to 80/50 then climb up to 160/100... then back down. When medications are "on" I am pretty steady at 110/70 these days... but it likes wondering around. When low, I get dizzy and have to use caution when standing up. These days I just want the medical folks "do not medicate for BP" fun times.
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Old 10-18-2016, 12:38 PM #18
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Default October Update

Here is an encouraging update. Please remember that I am not a doctor or anyone remotely qualified to give advice. I just want to report my experience in the hopes that others may also benefit from my successes and failures, possibly without going through the valley of the shadow of death personally.

After several months of pretty severe withdrawal from the drugs I was taking in the prior posts my body has settled into a somewhat normal routine. I wake on purpose at 5:30 a.m. and immediately take 1 Amantadine 100 mg and 1 81mg aspirin and 1 benztropine 1 mg along with Ubiquinol 300 mg supplement. I then have a bowl of raisin bran or similar cereal with milk and banana with one or two cups of coffee. This blunts the strong "on" I was getting before and smooths the medicine. Although this is a bit of limiting my abilities it makes the jerky muscle movements far more manageable or nonexistent and allows me to drive and function with greater ease.

I take the 2 capsules of Rytary 23.75/95 mg 5 times a day starting at 6 a.m. every three hours. This is very convenient and is even more so using my timer on my cell phone (I can't believe I missed this for this long!).

Around 2:30 I take another 1 Amantadine 100 mg and 1 benztropine 1 mg. At 6 p.m. is my last Rytary and only have my Ubiquinol 300 mg supplement which I take at bedtime.

The results? Much smoother and consistent days. Gone are the symptoms which concerned me just a few months ago. Gone are the problems sleeping. Gone is the restless leg syndrome. I have my life back, at least for now.

EMOTION

I do want to point out at least as a side note that emotion really changed the effectiveness of the meds. When I had to speak to anyone, and especially if I had to argue the muscle stiffness and jerkiness were right there. Not too bad and manageable but uncomfortable non the less.

Some years back I was in Guatemala and traveled around the country quite extensively. I never feared much for my safety until the day I got shot. That incident opened my eyes to the reality of what is possible, and every time I come into a similar situation my senses become alert to the danger. I never experienced that before the shooting but now I think about it a lot.

It became the same with Parkinsons. I was afraid that trying different meds might make it impossible to reclaim lost ground. I am happy to say that is not true, at least not for me. I am better than I was 19 months ago!

My biggest fear several months ago was that I might die for a totally preventable reason. And it angered me that in all likelihood my death would be listed as "complications due to Parkinsons". But it wasn't the Parkinsons it was the medicine which caused heart failure! And we are giving this medicine to 10 year olds to take for life!

My second biggest fear was that as I tried different meds and symptoms seemed to be worsening I would be losing ground which I could not regain. This turned out to be totally false as I have now regained much of what the statin drugs had taken away.

I will keep this post updated every couple months. Hope it helps you on your journey.

Jim
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Old 12-19-2016, 11:31 PM #19
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Default Rytary Update-Good News!

Please consider the following information as my personal experience and in no way a recommendation or suggestion for others to go down this road. I am not a doctor; I am just a guy with PD.

Well my story continues to improve. I wake on purpose at 5:30 a.m. and immediately take 1 Amantadine 100 mg and 1 81mg aspirin and 1 benztropine 1 mg along with 2 Ubiquinol 300 mg supplement. I then have a bowl of raisin bran or similar cereal with milk and banana and berries with one or two cups of coffee. This blunts the strong "on" I was getting before and smooths the medicine. Although this is a bit of limiting my abilities it makes the jerky muscle movements far more manageable or nonexistent and allows me to drive and function with greater ease. It appears that the best experience comes if I eat just prior to the 1st dose of Rytary at 6pm. Eating even 10 minutes after taking the 6am Rytary may result in a bit more of a difficult time with muscle jerkiness but still far better than a few months ago.

I take the 2 capsules of Rytary 23.75/95 mg 5 times a day starting at 6 a.m. every three hours. This is very convenient and is even more so using my timer on my cell phone (I can't believe I missed this for this long!).

Around 2:30 I take another 1 Amantadine 100 mg and 1 benztropine 1 mg. At 6 p.m. is my last Rytary and only have my 2 Ubiquinol 300 mg supplement which I take at bedtime.

The results? Much smoother and consistent days. Gone are the symptoms which concerned me just a few months ago. Gone are the problems sleeping. Gone is the restless leg syndrome. I have my life back, at least for now.

I continue to remain consistently "on" and do not really experience hard "offs" when I stick to this routine. Driving is now a task I don't think about as in "will I be able to drive in a few hours or should I not take the trip". Seldom is driving restrictive as before when it seemed to be getting impossible to turn the steering wheel to park or raise up in my bed at night to turn over or pull up my pants when getting dressed. Gone for several months! Life has definitely improved!

Just as an example yesterday I got up at 6 am and drove 30 minutes to deliver my son and his motorcycle to the track. Drove back home and at 10:30 am drove an hour and a half to LAX to pick up my wife returning from a 2 week trip to Guatemala (during these two weeks I did mommy and daddy duties with the 5 yr old and delivered them to and from school). At LAX waited standing in the lobby for an hour, collected baggage and wife and drove an hour to a restaurant, ate and drove another 45 minutes home. Lastly drove 50 minutes to my sisters house for dinner and collected my son and his motorcycle, then 3 hours later drove motorcycle trailer and moto 50 minutes home. A rather full day I didn't give any time to consider-I just did it.

Another word about eating. I love to eat but find it more difficult to function if I eat too much (that full feeling or as my family says, STUFFED! It doesn't feel good so I try to eat a good cereal/fruit breakfast and food maybe 3 more times before my Rytary.

Now for the downside. One of these meds is causing me concern on memory loss. Not just the typical old age forgetfulness but not being able to remember which freeway direction to take. Or turning a wrong direction going to school. I am checking this with my doctor and will continue to report.

That's it. Hope it helps.

Jim
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Old 03-19-2017, 10:11 PM #20
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Default Update on Rytary and Amantadine

What a relief! Only 1 year ago I was seriously considering DBS as life seemed to be coming to a point that I could not face the day and keep up with my daily routine. I was finding the rigidness of my muscles along with the jerkiness was making it difficult and coming darn near to impossible to do the things people relied on me to do. And this scared me.

My life consisted of severe on and over-on, followed by off and way, way off. Although it wasn’t constant the unpredictable nature of the cycle made it difficult to go out without knowing if I was going to be able to safely return. My fear of the unknown status from hour to hour of my Parkinson’s was forcing me to accommodate my disease, something I had resisted for 20 years living with this beast.

I had tried the new drug Rytary with limited success but faced side effects that were uncomfortable and unpredictable. The ons and offs were sometimes too extreme, eating food and emotions were bringing poor efficiencies and I was increasingly worried about the path I appeared to be on.

And then I asked here for help and someone suggested Amantadine, someone else told me of a study on constipation and I added benztropine. That was 5 months ago or better and here are the results.

Constipation: gone! I eat a bowl of granola and a little grapenuts, sprinkled with blueberries, raspberries and blackberries, followed by one banana in some 2% milk and I have 4 to 5 good solid bowel movements a week.

Ons and Offs-With the addition of the Amantadine these have become much smoother. Offs are limiting my normal symptoms to maybe 20% less than normal but this is easily accommodated. And ons are sometimes a bit hard but not near as difficult as they were prior. I function well enough to go to the office 4 days a week for three or four hours, go to lunch or dinner or even ride with someone else to an appointment. And almost no tremor!

All this and only one major drawback so far. Memory! I am losing memory. We have tried several things and continue to experiment. I will keep you posted. Let me know if you have any ideas.

Jim
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