Rytary Experience
 

For what it's worth I am not a doctor, a researcher or particularly driven to work hard with respect to my disease. Disease is highly individual. Disease is highly unpredictable, at least Parkinson's is. That's my opinion as is what you are about to read. Please don't do anything I've done or am doing without a great deal of research and advice from your neurologist or other health professionals.



25 years ago I began having symptoms of what turned out to be Parkinson's. To this day I still drive, swim, walk, sleep and do most activities without assistance, although it is getting harder. In retrospect I can see the subtle changes like interest on a bank account that, watched daily seems to move at a snail's pace yet when taken over a given number of years slowly and steadily progresses. Like the slimy snail my disease moves ever forward towards its eventual conclusion. Enough poetry. Let's get started.

Approximately four years ago after taking my levodopa medication for over 10 years I decided to stop and see what would happen. The story is written on this forum, along with all my background information. That experiment lasted almost a year as I recall. For the next several years I and my disease carried on to the point that in mid-2015 and facing severe difficulties with controlling muscles I was sincerely considering DBS. Then came the new drug RYTARY and, after investigation I decided to give it a try. I decided this even though I am convinced that the pharmaceutical companies are a plotting, conniving group of greedy people intent on growing the bottom line without regard to the lives of the people they're affecting. In 2001 when I was diagnosed with Parkinson's the neurologist told me I should take the levodopa medicine even though it had a limited effective life because the pharmaceutical companies would certainly come out with a new pill within five years. That was 15 years ago. And here we are with no magical pill. But we have Rytary.

Benefits of Rytary

1) Smoothness. By this I mean a much more gradual on and notice if you will when the pill is not going to work much longer. That gives me time to get to where I need to be if at all possible. If not it will be more difficult to drive, converse, walk etc. I will still be able to do it but with some difficulty depending on how my emotions have been, what I have eaten and several other factors. Still, all in all it is a smoother transition.
2) Longer lasting medicine. The medicine has less of an upward and downward spike, making it possible to take a higher dosage that lasts a longer time than carbidopa /levodopa. The benefit here is the ability to take the pill at 6 AM, 9 AM, 12, 3 PM and 6 PM and to have the last pill at 9 PM. By carrying the pills on me excepting the last pill of the day it is easier for me to backtrack to discover when my last dosage was. This is a great simplifier for me.

Negatives of Rytary
1) Smoothness. Sometimes the pill is so smooth it never engages or comes on. Because it can come on at any minute and frequently does after about 40 minutes, I sometimes wait all day and it never comes on fully. Because I don't want to engage the fully on and overmedicate, I end up waiting and maybe taking the dosage a half hour earlier. And now, sometimes I substitute a 36.25\145 in the place of my 23.75\95 with varying degrees of success.
2) Food is a disaster. Nothing seems to be consistent. Nothing happens the same. I pretty much have to skip eating anything solid until after my important events are completed.
3) Emotions are a direct influence on this medication. But there doesn't seem to be any rhyme or reason. I have yet to figure out any remedy for my consistent ons and offs.
4) Dosage has been impossible for me due to the above.
5) Right arm tremor is present even when transitioning into and out of an on time. This is interesting because it is present maybe six times more often than with the carbidopa\levodopa. While not a great negative it is somewhat aggravating.
6) Apathy. All initiative is gone unless I am extremely interested in something and focused. Example: I have six months worth of mail sitting in my office in various stages of sorting and yet I can't seem to invest the two hours necessary to accomplish this task. I am capable-- I just don't care to do it.
7) Cardiac issues, constipation, also.

All for now.

Update 5/7/16
 

5/2/16

All this week I have, after speaking with Neuro and Cardiologist, discontinued all meds except Rytary. I have done some research and the big Pharma controversy keeps rearing it's ugly head...but that's enough of that.

I should mention I am also now "spiking" my Rytary when necessary by taking a 1/3 bite of a carb/lev 10/100 immediately if I feel an Off coming On, going to experiment with this for a few weeks. Other than CoQ10 100mg morning and night and trying to eat a little better that is all.

Last Night

Actually this morning at 12:30 am I was awakened to find the lower half of my body was about 50% paralyzed making it almost impossible to turn over. This caused me immediate concern and I got up to see if I could walk, which I could with some difficulty so I immediately went to the bathroom and took a 10/100 carb/lev. Walking back to the living room I realized I should prepare for the worst so I went and got two more 10/100, took a second one and sat down in the living room talking with my daughter. 30 minutes later I came On and several hours later returned to bed and slept soundly for 3.5 hours.

I deduced this was not cardiological but Parkinsons/Meds related. Having been "good" about eating right until last eve (steak and baked potato) and quitting meds...

There you have it.

Oh what a difference!
 

I must preface this post by saying how disgusted I am that not only do I have to deal with Parkinson's the disease I also have to sort through information, discern the truth, and walk down a path largely unlighted to try to maintain or lose as little as possible of the abilities I now have. And while help is offered from many sources, who can truly help me with my disease? Who walks where I walk? The meds-makers? The doctors? My friends and relatives? Lots of these people truly want to help but as the Bible says "oh wretched man that I am...". And I am a fortunate man with Parkinson's.

Just 48 hours ago my biggest fear was that I would die and my death would be called cardiac arrest. And it might be true. But the real underlying question that I wanted to have answered was by whose hand? Did you see the report that medical errors are now the third leading cause of death? Conflicting prescriptions, side effects of medications and other misunderstandings and downright wrong conclusions wholly purposed for making money- all of these and more. And again, I am supposed to become a researcher to figure all this out. And I can't even get around to open my mail! But I digress.

48 hours ago I suffered one of the worst nights of my life. In retrospect it was probably medications that I stopped or food that I ate or a heart attack or medications that I take... Or a combination of all four, who knows? I don't want to be an alarmist but the system is way out of control. And what to do? As I sat in my living room surrounding myself with things that may not be able to get in a few more hours I had to decide what to do? Go to the emergency room? So they can tell me it's not my heart, talk to the neurologist? I don't mean to be sour on the whole medical community and I have a great health plan but really, it's out of control!

(Here again I tell you my personal feelings, actions and comments but you do what you think is right based upon your doctor, family and medical community etc. If I die today I am responsible for me. Be careful. Always talk to your doctor.)

Seriously, when I start to research the meds I'm taking (which aren't very many) I see three of the six can cause heart issues (and that's by themselves, no telling what happens when they're mixed together), several are very controversial even between doctors and those in the medical community-and I am supposed to figure this out. Go figure.

So Saturday I felt a lot better after getting through the night Friday night, after the big steak and potato dinner just a few days after quitting my meds. Though I still had issues with my head and my heart I was able to get up around, go out for lunch (salad). Sunday was even better taking my family out and sleeping both Saturday and Sunday night very well. Now it's just trying to get the Rytary Carb/Lev dosage down or discontinue the Rytary altogether.

Here we are on Monday morning and I feel good. Who knows, maybe I've overcome the worst of it, maybe not. I will continue to post anything helpful to the cause but I remain disappointed in the system although I have a great deal of gratitude to God who has got me these last 25 years and for the faith He reveals to me to carry on, largely for my family for whom I am also extremely grateful.

Lastly, please think twice before attempting something like I have. We are all different and the disease treats us all differently. I can promise you that at 2 o'clock in the morning Saturday morning I wished I had never stopped the pills ate the steak etc.

There you have it.

The Week in Review
 

​​
It's been an interesting week. Off and on last weekend, trying to determine what is related to Parkinson's, what is related to medicine and what may be related to cardiac issues. Fighting the fear of the unknown, and that's what gets me.

Had a bad night Tuesday, in bed and up again. Finally called 911 and took an ambulance ride to the hospital after taking my blood pressure at home and finding it to be very high (198/99). This turned out to be panic related as two hours later I was released from the hospital after it was determined that no cardiac event had taken place and blood pressure was normal (137/77). No drugs or other medications were ever administered, it was a pure panic attack! Kind of traumatic to go through but to be conclusively able to rule out heart issues, that was good!

Communicated with cardiologist who confirmed no cardiac issue present, and then with neurologist I am on a new plan starting today Saturday, May 14. I'm taking the following:

1) Rytary 36.25\145 terminating and replacing with two 23.75\95 every three hours starting at 6 AM.
2) One low-dose aspirin in the morning each day
3) One Reduced Form Ubiquinol 200mg in a.m. and one in p.m. (more on this later)

That is all.

Weekly Update
 

​ ​
Well I can't believe it's been only a week since I started a firm regimen of two 23.75/95 Rytary instead of one 36.25/145. But it's been a week literally lived every three hours to see what the next manifestation of drug withdrawal or Parkinson's or whatever will bring. Since I started this at my neurologist's recommendation last Saturday I have been off and on good and bad, happy and sad- my emotions have been all over the place. I am at once angry for the medicine I've taken unnecessarily I believe (statins-a quote off the Internet: "... they make you so old so fast...") and just trapped in general in this medical dilemma and yet happy that it seems I have begun recovery, if such a thing exists. But for sure I can say I noticed several small items of improvement including eyesight, finger snap, equilibrium in the right and left side as well as more initiative and physical muscle strength. These are welcome and very positive indications if they continue.

I want to break down for you outcomes by each three hour period.

6:30 AM

So now my regimen consists of these two 95 Rytary starting about 6:30 in the morning along with one 81 MG aspirin and 300 MG Ubiquinol (reduced form CoQ10) and a cup or two of coffee. This results in a moderate to strong "on" in about 30 minutes that allows me to accomplish my bathroom necessities without problem and without slowness and without rigidity. This is a very good result and would be an excellent time to exercise although I don't. About an hour into this time muscle rigidity comes on although slight. This lasts for the full three hours.

9:00 AM

Two more Rytary and continued full "on". Good bodily function and motor skills limited only by muscle rigidity and jerkiness which is manageable. However, later in the week through today this muscle rigidity and jerkiness is noticeably increased, making driving, typing and other fine motor function difficult.

12:00 Noon

Two more Rytary and continued full "on". Again, yesterday and today this is becoming very uncomfortable. I attempted to mitigate the rigidity and jerkiness with food which was delayed but effective. By 3 o'clock rigidity and jerkiness have dissipated and the "on" is much more gentle, with a very gentle shakiness in the right arm. This is far more tolerable than the jerkiness and rigidity.

3:00 PM

Two more Rytary and continued mild "on". No jerkiness and no rigidity but continued shakiness in the right arm. Worsens with emotion but very tolerable and dormant if not in use. Movement has slowed but is still comfortable, driving is much easier and walking is slower but manageable.

6:00 PM

Two more Rytary and a plate of vegetables and fruit and continued mild "on". No jerkiness or rigidity but continued shakiness right arm. All else slower but normal. Interestingly, both sides right and left are fairly even and equal. Walking is normal and swimming is possible. Yes, full on swimming-dog paddle, breaststroke etc.

9:00 PM

Two more Rytary and continued mild "on". Still no jerkiness or rigidity but continued shakiness in the right arm but only slightly. Similar to 6 PM but wound down a little bit. Go to bed around 10 PM to 11 PM and wake up maybe once in the night to turn over and generally go back to sleep. Sleeping is now more or less good.

Conclusion

I have to tell you that throughout the week I have been through some interesting situations which I believe are related to the withdrawal of the medications. I hesitate to say it's better now as what a difference a day makes. Just when I think yesterday was good and I've crested the hill another worrisome event happens like a pain in my head or buzzing in my years or restless leg syndrome. So, hopefully as these issues dissipate I can try more directly to find out what foods mitigate the rigidity and shakiness which is my primary problem now.

If you have experience with Rytary in the foods that makes it better or worse please provide them in a reply to this post. The Internet is all over the board saying everything is bad and everything is good.


There you have it.

Rytary Dosage Update
 

Well I have survived (so far) the withdrawal from meds. I continue to take only (1) 23.75/95 Rytary starting about 6:00 in the morning along with one 81 MG aspirin and 300 MG Ubiquinol (reduced form CoQ10) and a cup or two of coffee. I have discovered it is better to take (1) 23.75/95 Rytary every 1.5 hours and have been on that regimen for weeks. But just as I think I have passed though the eye of the storm WHAM! I get another setback.

For the last month my regimen above has resulted in fairly consistent baseline results. I come "on" and stay on as long as I don't eat and have minimal interaction with others. Once I get outside my comfort zone I begin to deteriorate albeit moderately. As long as I am in my car/house it is fairly well tolerable, even to the point I felt comfortable to start experimenting. Let me tell you of my baseline existence under the above regimen.

The "ons" are good and strong and somewhat dependable. They were however tending to give me tight muscles and jerkiness making it difficult to walk normally, eat normally and drive. I was also experiencing restless leg syndrome where in the night my right leg would simply move in a twitching motion, sometimes for hours. Sometimes it was pleasant being "on" even though I had not been medicated for 5+ hours. Other times it was irritating and kept me awake.

​My main problem appears to be​ under and over medication. The frustrating thing is how simple the fix appears to be. It is right there in front of me. If you are under medicated, take more. If you are over medicated, take less. Yet this is where my problem lies.

As I stated above I thought I had reached a point where I could experiment, after maintaining a baseline for several weeks. Until I ate something I stayed on subject to the jerkiness and rigidity which was difficult to tolerate. When I ate something I lost some of the on making it much more tolerable although with some loss of function. So two days ago I decided to change the dosage for the 2.75 Rytary from every 1.5 hours to every two hours.

This went well the entire day and I thought as I retired for the night that I might have discovered the answer to my problem. After going through the day with only very mild loss of function I thought yesterday was going to be similar. But I was wrong. My first dosage was at 6 AM but I returned to bed and slept until 7:30 AM. I took my second Rytary at 8 AM and had some apple slices and coffee. Then I uncharacteristically set about cleaning the kitchen for the next 30 minutes and began to notice it was getting warm in the house. I checked the air conditioning and found it was 70° then realized I was sweating mildly so I sat down in my chair. And then the off came rather forcefully. I can only describe it as the traditional sluggishness accompanied by awareness that my heart is pumping with some unnoticed exertion. Truthfully I do not know if this is my imagination brought on by my experience with the statins or it is a real. This is a curse that accompanies the statin scare from several months ago. It is also accompanied by a strange feeling in my head, sufficient to make me think something is happening, a mild alarming sensation.

My immediate dilemma is what to do, what is causing my problem now? Do I have a cold, or will the medication kick in at any moment? Should I increase the dosage and ruin the experiment? Am I overreacting? Was it the apple slices? Cleaning the kitchen? The coffee which I had that morning but hadn't had for several days? How frustrating not to know the direction I should take! And so I decide to increase the dosage of medication. This proves to remedy the problem and yet I still have a full day of extraordinary ons and offs, going to bed at 11 PM last night and getting up at 2 AM. I don't know.

I guess I will experiment some more next week. I will report if there is any change. For now I just suffer the frustration of going it alone, uneducated and unqualified but knowing that nobody else seems to care in the medical community, specifically the pharmaceutical companies. It just seems like such a minor problem that could be remedied.

Jim

not to defend the drug companies but they have tried to address ON/OFF with long lasting agonists, especially the REQUIP AND MIRAPEX XL and NEUPRO PATCH. Any drug that you take orally and is affected by food, protein interference, stomach emptying is always going to have variablity in it's affect. that's why there's a sublingual apomorphine, inhaled l-dopa and extended release amantadine in the pipeline so we can deal with OFF better.. it sucks, i agree, especially if one can't tolerate/afford these longer lasting drugs.

i have one suggestion, start the day with one simple 25/100 or 1.5 tablets, that will get carbidopa into your blood which is just as important as l-dopa. when you start to go off, take another 25/100. if you don't come on in 45min, then there is something wrong with your digestive system. you might have to take a 25/100 every hour but at least take it for your first 2 doses of the day as a "diagnostic" tool. after you come on with 1-2 doses of 25/100, then take the rytary. i do this myself with CR, after the first (2) 25//100 i'll take 50mg with 200mg CR and will get 3-4hrs of on time. i'll repeat the pattern, i don't like taking (2) 50/200 in a row.
protein is my enemy too but i try to eat a breakfast and think i have a better overall day, i find boxed soups like tomato, sweet potato are low in protein and i'll add some veggies and add a 25/100 to my normal dose if i don't come on or just accept being off after eating, if i lose self-control and eat a cup of yogurt i know it will be 2.5-3 hrs before i can take C/L, any sooner and zippo.

Which is why i bit the bullet and got into the DBS line. at our stage no matter what we do C/L is not going to do the job. either not enough dopamine receptors, oral l-dopa gets destroyed too fast in the brain, dopamine receptors get over/under sensitized. remember, cells are responding to changing l-dopa concentrations by changing enzyme levels of enzymes that mfg/breakdown l-dopa at unnatural levels so they're alway undershooting/overshooting.

fwiw, for those with intolerable OFF/ON and can't tolerate or can't get the adequate relief from agonists and can't/won't do DBS, there is the DUPDOPA but hopefully neuoderms L-DOPA pump which doesn't require surgery will soon be available. interestingly, you get higher doses of l-dopa than you do orally but less dyskinesias. and if you go off the continuous feed l-dopa and back to oral and the benefit lingers.

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.

Could one answer to the rigidity be laxative?
 

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

Thank you for the advice soccertese. Something you said really got my attention. You said " if you don't come on in 45min, then there is something wrong with your digestive system." About 5 years ago I was having horrendous bloating one night along with overall discomfort and pain so much so that I went to the Emergency Room. After an allnighter and relief primarily from vomiting and defecating the doctor told me that I had some growth in my upper gut from gall bladder surgery some 25 years ago that was slowly choking off my intestine. He said if it gets worse I may have to have surgery to cut it away and clear it up. Have only had another major occurrence once and after vomiting was fine.

Thanks again for the advice. I will try a variation of your suggestion.

Jim

Eating/Digestion/Laxative?
 

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

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.

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

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.

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

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.

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. :)

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

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

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

Continued Success
 

Just wanted to post a quick update.

As of today I take 1 capsule of Rytary 23.75/95 mg 8 times a day starting at 6 a.m. every two hours, plus 1 Amantadine 100 mg and 1 benztropine 1 mg. AT 6 AM and 2 PM. I also have my 2 Ubiquinol 300 mg supplement which I take at 6 am and 2 pm.

Problem #1: Memory loss. I am searching for just what is contributing to memory loss. MRI is scheduled. I will update after I hear the results.

THAT IS REALLY THE ONLY MAJOR NEGATIVE FACTOR! I almost never, NEVER shake. I have very few ON and OFF moments. Food interaction is minimal to moderate but does not cause a crash. A little "restless leg" action is very tolerable.

What did my doctor (MD) say when I went in to see about my bloodwork, if it is normal? "You got Parkinsons, deal with it." This is just wrong thinking. Maybe I am declining into the deeper pits of this disease. After all, I have had it for almost 30 years. Caregivers, fellow PD sufferers, don't give in. Keep looking and experiment and you may be able to find a better path. A year ago I nearly resigned myself to DBS and today my symptoms are so manageable. Although I have lost my ability to fly, roller skate (I tried this two weeks ago-I used to be pretty darn good), ride a motorcycle off road, etc., there is so much I can do!

However, this disease affects all of us differently. If it doesn't today maybe tomorrow...Hope this helps someone today.

Jim

Hi Jim,
I like your smart posts.
About memory loss: usually PD aggravates problems. My memory of names and numbers was never good, it got much worse with first symptoms of PD.
So this may hint you if your problem is attributable to PD, but every case is different.
Take care, Jacob

Memory
 

Thanks flashinet. Yes we are considering PK as the culprit both have other considerations mainly concerning the meds. Thank you for your kind comment.

The message I hope comes through is that you may not be able to see your PK symptoms improve and the doctors may have told you that you have to accept things as they are, there is still hope. Research the meds you are taking. With your doctors help try changing them out. Read the histories of people and be willing to try things with your doctors help. But you can lead if the doc is not willing. A year and a half ago I was thinking my life was ending. After changing the meds I have changed for the positive as well. I can go into more detail as to how I changed but it is a slow process and the suffering has to be worth the effort. For me it was.

I am so thankful for my 6 year old daughter because I have to live for her. And the rest of my family. I rented a house that is two stories so I could be forced to climb stairs several times a day. I drive a dune buggy off road with my son on his motorcycle. I took my kids roller skating (yes I did) but one fall showed me I need to stop trying to do things I used too and accept certain lost skills (aircraft pilot, skater, off road motorcycling etc.). Some of those things are likely gone for good but who knows?

I know some of the things I say are difficult or impossible for some to understand. And I am certainly not bragging. But if you or your caregiver sees any validity in these posts try to get out of the thinking that things are hopeless. IT IS NOT. But we have to keep trying.

Lastly I want to say thanks to all who have helped me on my almost 30 year journey with PK. In retrospect I could have been much more cognitive and responsive to this disease. But for almost 25 years I have taken this disease on, not changing so much but certainly changing. But for the last 3 years or so I could see the writing on the wall. And that brings me to this statement from Game of Thrones: "Every time I come back, I'm a little bit less. Pieces of me get chipped away."

Ditto for me.

Jim

Jim, if you like to experiment you may want to see this:

Minding your mitochondria | Dr. Terry Wahls | TEDxIowaCity - YouTube

This is Dr. Terry Wahls video on how she reversed MS with a diet.

I'm on this diet for 4 months. No grains, no sweets, green smoothy in the morning. I wouldn't be able to eat so many leaves, smoothy is disgusting but doable. Red veggies I couldn't do.

Lost 14lbs, no constipation.
My PD didn't reverse. May be it develops slower but how would I know?
Hope this helps,
Jacob

I take amantadine and cogentin or benztropine only. When I started them then immediately my memory suffered!! This is part of the side effects of these drugs.

Thank you for sharing your journey with all of us. It really gives one another perspective.

it may take longer to see a change
 

I read somewhere that Dr. Wahls did not see any improvement until she had been eating as recommended in her book for nine months. I know everyone is different, but thought I'd mention this so that you don't get discouraged. You may just need to stick with it longer before you see improvement.

I will say, it's a very hard diet to follow, so congratulations on sticking to it for four months. Let us know how it goes:)

Rytary Update
 

Sorry for the late update. I've been unable to set time for this but I have been thinking I should update to share the wonderful results I am getting and have gotten for many months now.

First let me say again that I am not a doctor or medical person and I don't play one on TV :D. Everyone is different and each of us must do as we see fit. I offer this up to show my experiences with Rytary and hope that it will give some of you hope and a map of how I got to where I am-MUCH IMPROVED!

The same applies from my earlier posts:

Caregivers, fellow PD sufferers, don't give in. Keep looking and experiment and you may be able to find a better path. A year ago I nearly resigned myself to DBS and today my symptoms are so manageable. Although I have lost my ability to fly, roller skate (I tried this two weeks ago-I used to be pretty darn good), ride a motorcycle off road, etc., there is so much I can do!

With your doctors help try changing the meds, slowly and record the results. Read the histories and experiences of people and be willing to try things with your doctors help. But you can lead if the doc is not willing. A year and a half ago I was thinking my life was ending. After changing the meds I have changed for the positive as well. I can go into more detail as to how I changed but it is a slow process and the suffering has to be worth the effort. For me it was.

I now have almost no on/off times, NO SHAKING, eating continues to be an issue, no constipation, etc., etc., etc.

Let me encourage you to ask questions and experiment with your doctor.

Life is great!

Jim