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Topic drug doses too high? - Family vs Patient perspective -NYTimes article Go to previous topic Go to next topic Go to higher level

By Reflection On 2013.02.03 10:10
Friends - I read the article I link to below, and kept thinking about the experiences many here have had that stem from too high doses of dopamine from Parkinson's meds.

While the article deals with a young adult who ended up taking too much ADHD medication, the dynamic between him and his parents, who try with increasing desperation to reach out to his doctors, beg them to stop prescribing the medications that are making him crazy and that eventually lead to his suicide, feel very familiar to me.

http://www.nytimes.com/2013/02/03/us/concerns-about-adhd-practices-and-amphetamine-addiction.html?pagewanted=all

What struck me: despite very clear, compelling, passionate pleas directly from increasingly assertive and desperate parents, telling his doctors the negative psychological impacts of the drugs they were prescribing, the doctors choose to believe the patient, kept prescribing the drugs. The kid, after arrests, psychiatric hospitalization eventually committed suicide.

I readily admit that my experience with my husband's dopamine dysregulation syndrome may have been worse than what some go through - he was on 2 1/2 the maximum FDA approved dosage of Requip at one point. Yet I have read on this forum of even worse cases.

The article evoked to me to difficulty of getting through to his doctors, and the high cost of doing so on my relation with my loved one - who, in what I now call his "crack addict years" thought he was just fine. Since too high doses of these meds can cause paranoia, combativeness, rages, violence, the barrier to raising the issue with doctors is very high - because your loved one may react with even greater paranoia and hostility. I lived in fear for years, and it is debilitating. The article mentioned how the parents started locking their bedroom door at night in fear of their son - oh, yeah.

The article's quotes from the doctors who kept prescribing the medication help show their perspective - their responsibility is to the patient, not their family, and they tend to believe the very plausible, "normal" persona that our loved ones can put on for doctor visits.

We're through this stage, and out the other end, thank the Lord. I can honestly say my husband is "better" than he was 5-6 years ago - though his Parkinson's has progressed. Losing the bad effects of overmedication (dyskenisia's, dramatic swings, those nasty cognitive and behavioral effects) has more than outweighed the progression.

I don't want to offend anyone, and if this doesn't resonate, count your blessings. If it does - I want to help you see that things can be better, for you and your loved one. I wan to give you strength to do the very difficult task of respectfully insisting that their doctors take your concerns seriously. Maybe you can avoid the "crack addict years" that took such a toll on my husband, me, our kids.

A member recently posted a link to an excellent article about when you're living with someone who is not longer the person you love - the Dr. Jekyll & Mr. Hyde syndrome:
http://www.myparkinsons.org/cgi-bin/forum/topic_show.pl?id=3805
In our experience, if the basic personality of the person is fundamentally changed - if he changes from a gentle person to a scary one - it's the meds. Those meds are intended to change brain chemistry - and they do, they do.

There are a lot of Parkinson's symptoms that this doesn't apply to - apathy, depression, some slow thinking etc. My husband has done very well on Wellbutrin for the depression and apathy, and it doesn't produce the "overmedicated" symptoms. In retrospect, the "executive function" problems, while there, were greatly amplified by the overdose of meds. And yes, sadly, I know that Parkinson's progresses.

I hope all our loved ones, and those who love them, can live as well as the can, as long as they can.

By jcoff012 On 2013.02.03 11:01
Thank you for posting this. I am very interested in the discussion your post might start.

Yesterday, we went to our monthly PD meeting and the neuro that was the speaker was great and spent a great deal of time speaking about medications. He stated something that kept me awake last night...he said that the average PWP takes 15-20 pills a DAY...is that really true??? Of course, that includes pills for depression, for sleep, etc...

We are new to the personal side of rhe disease, but when I just questioned my brother in law about my MIL's PD journey, he said, yes, Mom took 21 pills a day...

Is all of this really necessary? REALLY? I cannot imagine my PWP taking that many pills daily...I just cannot imagine that...

After years on meds, do they lose their potency, so that the pills are necessary, or is it because there are new problems?

Like I said, this seemed to unnerve me...I know it bothered my husband. He said, "I don't want to become a walking pharmacy, Jane."

Anyone?

By lilflower On 2013.02.03 11:31
As time goes on so does the disease and with the changes yes the meds change too. Some stop working others change with their changes. Each person goes through different stages and their bodies and their minds react in different ways. Yes it is overwhelming at times and I can see how frustrated my husband gets when his med timer goes off but like he says with humor I guess it beats the alternative. Laughter and humor are still the best medicine every day.

By makrivah On 2013.02.03 11:57
My husband, 68, takes 27.5 pills a day taken at 5 different times. I posted the question about how to alert my husband to take his pills. It's not a trivial issue for sure.

He takes carbidopa/levodopa, entacapone, ropinirole, Galantamine hydrobromide, backlofen, clopidogrel bisulfate, oxbutynin chloride, tamulosin, docusate, clonazepam, rosuvastatin, and cranberry high potency supplement. These pills address: slowness, stiffness and tremor; increasing nerve impulse transmission to brain synapses; muscle relaxer; bladder function;, restless legs, anxiety, panic; enlarged prostate and urinary function; pain; cholesterol; blood clots, and last but not least, constipation.

He had prostate seed implants for cancer in 1999. He was exposed to Agent Orange during Vietnam era and diagnosed with PD in August 2005. (Yes, we have full Veterans Benefits at 100% disability for medical and receive compensation monthly.)

I've only known about this fabulous forum a month or so. I read it daily now with a mixture of awe and terror. I'm in awe of the courage and love shown and shared. I am terrified of what the future holds. I grieve for the loss of dreams and plans as ya'll do. I'm blessed that my husband is a gentle man with infinite tolerance and patience. That is not to say that these terrible disease hasn't robbed him of his quickness (physical and mental) and wit.

I'll keep reading and drawing encouragement and knowledge with almost every post.

By jcoff012 On 2013.02.03 12:57
As others reply, I have to say it amazes me that our PWPs need that many pills...*I* couldn't do it...seriously...I don't have the constitution for swallowing that many pills a day. Bless and love to all of you who do.

M, the future is uncertain and often scary, but I do suppose that there are a great many PWP who live almost normal lives...I know my MIL lived with it for 22+ years and only really went downhill after a fall about 6 months before she died. She was on a lot of pills, had lots of walking and freezing episodes, etc., but most days she was a very sharp woman. She was kind and sweet to the end.

None of us knows what lies ahead because PD is so unpredictable in each person. I think I was scared the first few years, but came to realize that we ALL are going to die (No one leaves this world alive, someone once said)...it's just that the PWP knows for sure his time is limited. And, yet....

The neuro yesterday gave us great hope. He was very clear that the research they are doing now with genome studies and DNA samples is giving doctors like him great hope for a cure (then he amended that to say...at the minimum, much better treatments of symptoms and earlier diagnosis to stop or dramatically slow down the disease) within the next ten years! HE said that, not me! ;)

Cannot tell anyone not to be afraid...it is all relevant...When we got home, we had a call from our son in law...our daughter, who lives 13 hours away, was in emergency surgery for her appendix...usually a very simple surgery, but her's was gangreneous, so they have kept her under observation today...He said they are "lucky" she came in, because within 24 hours, she wouldn't be alive...phew! Our vegetarian, exercise- obsessed daughter...who would have thought...

Life is like that. All we can do is keep going and loving and hoping for comfort til there is a cure. Hugs and love...and laugh! Jane

By LOHENGR1N On 2013.02.03 15:33
Reflection, a good and much needed article. These medications need to be monitored constantly and input from caregivers/partners need be considered also! You with what you've been through more than I can speak for that.

A question that keeps popping up from time to time with Parkinson's Disease is about medication? Please don't anyone ever feel they should not ask about our med's!

Okay, here's where the rock hits the window pane and a "pet" peeve of mine (lol one of many) Our medication increases not because we get used to it or the effects wear off after time. Our medication increases because our underlying disease is still progressing. Killing off the dopamine producing cells in our brains. Plain and simple as less and less is being produced more and more has to be supplemented by pills. When We approach the limit of how much Carba/L-Dopa we cam take other drugs are introduced to try to trick receptor cells in our brain into thinking we're getting dopamine. So it is the cell death in our brains slowly, constantly occurring that makes increasing our medication happen. The leaflets and booklets from the P.D. orgs don't tell us that. Nor do they say PD is fatal. They prefer to call it a chronic condition or chronic disease! Sorry PD isn't a nagging cough! I once questioned the A.P.D.A why they said P.D. isn't fatal? Their response? Well we don't want to scare patients, being told they have P.D. is bad enough without telling them that too! Well before I go off on a rant here I'm wrapping it up. Take care, best of luck and hang in there.

By Freespirit On 2013.02.04 08:55
Would you reconsider? I would be very interested in what you have to say about this. I have always questioned it when I've read that PD is not fatal. I've read that usually something else causes death before the PD does, but I bet that something else is brought on by PD. i.e. pneumonia, etc
Somewhere I read that PD causes brain damage. Only read that one time and it changed my whole entire outlook on PD. It helped me to understand why my husband does some of things he does, and that he cannot help it. This in turn, makes me a better caregiver.
I have known for years that PD causes a loss of Serotonin. . . but what happens next other than the symptoms we talk about here on the board on a daily basis? We are aware of the physical symptoms and the personality symptoms, but what else is going on?
Only twice have I read in the newspaper's coroner's rulings where a doc listed the cause of death as "Parkinson's disease." Now, I"m sure that many who died had PD, but it is rarely listed as the cause of death.

I hope that I am not offending anyone with my questions or inquiry.

By Jane On 2013.02.04 12:20
I am to a breaking point with my PWP. I suspect he is taking too much dopamine as he has an over active sex drive, is paranoid and is obsessive in trying to prove that I am having people into our small house in the middle of the night. When I told the doctor that I am having a difficult time dealing with these side effects of the medication, he responded that we must choose between these symptoms and his being more physically dependent on me. My PWP says he would rather have the physical capability and doesn't want to reduce the meds. Neither option sounds good to me. I try to tell myself that I'm not dealing with the man who I married I am dealing with the disease and medication side effects. Yet I can't stop repsonding to him emotionally which just makes his symptoms worse. I am failing as a caretaker!

By jcoff012 On 2013.02.04 12:30
From one Jane to another...you are NOT failing as a caregiver...the fact that you came here shows you care. The fact that his doctor isn't listening seems to be the problem. I don't feel qualified to comment on doctors, as I do NOT care for my husband's neuro...

Brings me to this point...anyone? Should we (Jane and me, Jane) look for another neuro? I don't feel my husband is given the best care and it sounds like Jane needs better support and care, too...but, how about how our husband's feel about their doctor..?

Again, Jane, doing all you can is all you can do...you are discouraged, NOT a failure...no one gave us a training manual on caregiving...we do our best...Hugs and love, Jane

By Reflection On 2013.02.04 13:37
Each person with Parkinson's is different - but from our experience, I don't buy the argument that there's a trade-off between our loved ones being more physically dependent (too little dopamine) or nuts (too much dopamine.)

I've said before - I believe a better analogy is insulin - to little is bad, too much is bad - the goal is "just right."

If the dose is high enough to produce the compulsive sex drive, obsessions, etc - it's also likely producing physical symptoms of having too much dopamine (sleeplessness, pacing, falls because impulse control, dyskinesias.)

Higher dopamine levels may feel better to our loved ones - dopamine is highly addictive, heck, that's WHY the crack epidemic happened. Too much dopamine produces mania, euphoria, grandiosity - but higher dopamine levels are ultimately physically harmful, as well as being psychologically destructive.

That's my experience, anyway.

I did sit in on an continuing education seminar for neurologists on PD. The neurologist/movement disorder specialist presenting said that he preferred to err on the side of treating motor symptoms. Taking a cynical view, that's what the pharma reps teach them (and you can bet those pharma reps for dopamine agonists are underplaying the side effects). Less cynically, movement issues can be treated more effectively than the cognitive/behavioral issues - doctors like to be effective - patients like the way they feel on more dopamine (heck, EVERYONE likes the way they feel on more dopamine) so they're happy.

And looking at it from our loved one's perspective, they usually don't realize they've become nuts (shorthand, obviously) - agnosia, and when you are overmedicated, grandiose, manic, you feel great.

Setting boundaries is very difficult - especially when our loved ones may well pick the drugs instead of the family, if that's ultimately their choice. My kids and I went through hell, sheer hell. If I had to do it over again - well, I wouldn't. The damage inflicted on me and the kids as I tried to hold the family together was greater than the benefit to my husband of my enabling him to, essentially, be a drug addict. Taking abuse (and I took a lot) isn't good for you, isn't good for him, and is horrible for kids, if yours are still at home. I thought it was my duty, somehow, to sacrifice myself for some ideal of marriage, family - poor guy had PD, it wasn't his fault. The result - the kids, I became collateral damage - even if my husband didn't mean to destroy us, he did. Well - he couldn't help having PD - but he could stop OD'ing on too much dopamine. That was his responsibility. My failure to protect myself, our kids from the fallout - that's my responsibility.

By Knoosy On 2013.02.05 00:20
Thank you Reflection for starting a thread on this subject and for linking the article. This is actually a MAJOR issue that concerns everyone who goes to see a doctor about anything these days, but let's stick to PD for now.
I wrote about our experience in a couple of my last posts. We had the meds drastically reduced and are now weeks later still experiencing tremendous benefits.

Our experience is that a majority of our doctors and psychiatrists are sitting on their brains no matter how many PHD's and awards they decorate themselves and their offices with.

They are unable to think in holistic ways. They focus on motor symptoms as if the patient was a machine, then after they prescribe meds to treat the symptoms, and the side effects start showing, they prescribe more meds for the side effects and so it continues. There is never an edit or re-arrangement of drugs. Instead, only more drugs are being added, and surgeries are being pushed on the patients who are being made to believe by their doctors that all of this is right and necessary since it is due to the "natural progression with all the underlying problems". In truth, the patients are being made sicker, weakened and altered psychologically by being overmedicated and over-treated.

Specifically, in our case, my PD friend was told that he was showing signs of exiting (in other words impending death) which I consider bad medical practice in the first place. No doctor has a crystal ball and conventional doctors especially seem very blocked from intuition and psychic ability. They follow big pharma protocol and just treat/suppress symptoms. After being told that verdict in question by his doctor, my friend was literally scared to death and agreeable to any treatment. So.....thereafter the doctors went full force in their insanity. They upped his Sinemet from 1000 mg to 1800 mg, added Klonopin, Docusate, Seroquel, Entecap, two different pain killers....don't ask me why, I have no idea.
My friend was told to take pills 8 times a day. One of his PD doctors had the brilliant idea to have him take pills 9 times a day every 2.5 hrs. Since the day only has 24hrs this meant he would never be able to sleep more than 2 hrs uninterruptedly. At the same time he was supposed to take Klonopin (sleep aid) and Seroquel (That after some research I call The Zombie pill). His psychiatrist, another one of my favorite characters in his medical team who deserve a genius award told him in a very soothing voice that all these calm and sleep pills would make him feeeeel verry caaaaallllm and gooood. He refused to hear my concerns about...."But scuse me doctor, how can he be up around the clock to take pills and simultaneously take sleeping pills and by the way I read the seroquel is not recommended nor proven by the FDA for the elderly and isn't Klonopin highly addictive....??" The psychiatrist acted as if I was not in the room. He carried on prescribing the drugs with a sense of grandiosity, the kind that he would probably treat with pills if displayed by his patients.

I knew the docs went overboard and did not put their brains in gear before prescribing all those meds. Sadly, they basically represent what many of us are dealing with. My friend took the meds, but we held of with the seroquel. He started leaning heavily and had to go to the ER. His medical team is connected to the hospital and graciously gathered around my friend with great concern on their faces. They kept him there for observation and set up meetings with surgeons. They had an MRI of his back done and discovered arthritis. WOW - what a bunch of geniuses. Their solution: Immediate spinal fusion surgery. I spoke to the 20 yr old surgeon who recommended the surgery and was going to perform it within a week so that my friend could then have DBS surgery 4 months later as wished by his PD doctor. Another bright plan since recovery takes more like 6 months and re-operation is often necessary.

At that point I've had enough of that charade. All that was necessary is some common sense and intuition which we all possess if we don't let the doctors intimidate us by their titles, demeanors and air of authority. I wrote about this on the forum and was empowered to find a second opinion. I found an internationally known professor in the field of PD and was able to get an appointment which luckily went great. I made my plea that I felt that my friend was over medicated and that the prescription and treatment didn't make much sense. He was cool as a cucumber, had my friend thoroughly examined for a long time, reviewed everything, listened to everything, spoke little and finally lowered my friend's pill load. He asked to come back to see him in one month, noted that the arthritis is very common and back surgery in older PD patients high risk. He also said that DBS was also to be seen and not immediately necessary. Pooh, was I relieved. I knew my feeling was right on. Within days my friend showed improvement on many levels. His leaning became less, there was more mental clarity. I saw the highly intelligent guy reappear, whom I admired so much and thought to have lost forever.
Back to the first medical team. Before we saw the professor, I asked his PD doctor if it could be that my friend was over medicated. The doctor asked me to send a list of all his meds. There were 17 different meds including the vitamins. I never heard back from this doctor. Not sure why...they either felt that we were difficult non-compliant or they realized that THEY were of the wall with their treatment plan or both.

I can only recommend to not ever be intimidated by doctors and always use your intuition and common sense first. No one knows your loved one as well as you and no one cares as much as you. Doctors often do generic assessments of patients and treatment plans, rush, look at the symptoms, rarely the cause, have financial agendas. Even psychiatrists no longer bother with therapy options. They have pills for every quickly assessed but not proven brain imbalance always causing another guaranteed imbalance. See the NYtimes article. It's all very dangerous and people's lives get cut short due to complications and side effects. It happened right in my family. My grandmother got deadly strokes from using strong rheumatoid arthritis meds for years. My aunt is completely messed up, her immune system destroyed from meds. I convinced my mom to get off her meds and Thank God she recovered from the serious side effects.

Please look at all the meds your loved ones are taking, do research on them, barter with your doctors about what and how much of it is really necessary. Ask your doctor to patiently try out adjustments and reductions.

By GladIhavehorses On 2013.02.05 01:46
I too am shocked at how many pills other pwp are taking. My hubby's Doctor believes in keeping his dosage of sinamet as low as possible. 4 years into this disease and she has not increased his med or added any. He is on only 2 different meds. yes he has trouble sleeping but eventually it catches up with him and he sleeps. And he has periods of depression and apathy but doesn't take anything for it and eventually it passes. I think Doctors are too quick to throw pills at patients just to get them out of the office. They don't call you at home to find out how it is working. I know we aren't there yet in the disease like you most. That I am greatful for. His Doctor tells him to just Keep moving.

By Knoosy On 2013.02.05 10:29
A lot of meds your loved ones could and should do without.
There is this notion in this country that all want to be happy all the time. Depression is regarded as a disease.
Depression can be a great blessing. It's not natural to be happy all the time. Depression is part of life and usually a process of growing and realizing something. Your soul is trying to tell you something. It's sending messages from the sub-conscious. The best thing is to surrender to it and most of the time it will pass. Taking anti depressants is the absolutely worst you can do. It divides the soul from the self and the person is removed from any possible self realization and healing. Anti depressants should be only indicated in very severe instances with serious suicidal tendencies or serious potential harm to others. So if your loved one was put on Zoloft, sertraline, prozac or any other of that garbage, you should seriously consider to discontinue it with the help of your doctor due to potential side effects of discontinuation. It is said that PWP suffer from depression due to dopamine loss. My friend was put on sertraline which altered his personality and made him very annoyingly upbeat thinking that it wasn't necessary to pay taxes anymore nor bills. Forget about planning for the future. His last doctor took him off the anti depressants and he is fine, much more grounded, realistic, aware and no longer annoying to others.
Seroquel is another bad drug that should definitely not be given to the elderly. You can google death by seroquel. These kinds of meds alienate your loved one from you and from society. They zombify people.
Klonopin or Clonazepam is also being prescribed a lot. Google it, it's highly addictive and harder to discontinue than a crack habit. It contains aspartame which is very bad for Parkinson's brains and bad for all other brains.
PWP have problems sleeping through the night.
MELATONIN is a natural very effective supplement that helps with insomnia. It also helps with sundowning that is related to cognitive decline. Studies showed that it has an overall positive effect on cognitive abilities.

By Knoosy On 2013.02.05 10:53
To makrivah who wrote:

"My husband, 68, takes 27.5 pills a day taken at 5 different times. I posted the question about how to alert my husband to take his pills. It's not a trivial issue for sure.

He takes carbidopa/levodopa, entacapone, ropinirole, Galantamine hydrobromide, backlofen, clopidogrel bisulfate, oxbutynin chloride, tamulosin, docusate, clonazepam, rosuvastatin, and cranberry high potency supplement. These pills address: slowness, stiffness and tremor; increasing nerve impulse transmission to brain synapses; muscle relaxer; bladder function;, restless legs, anxiety, panic; enlarged prostate and urinary function; pain; cholesterol; blood clots, and last but not least, constipation."

I get dizzy just reading what your husband has to take. I can't imagine all the unknown drug interactions resulting from that. Doctors are usually clueless about those and like I wrote before instead of back tracking if meds are causing new symptoms, they just treat the new symptoms with more meds.

Our new very experienced doctor told us that he doesn't recommend entecap with the sinemet. The entecap has only a very short boosting effect on the sinemet, not even worse taking it.
I've never heard of most of the meds you list, but I would definitely slowly eliminate the Klonopin. It makes the cognitive issues worse!! It even contains aspartame. Try Melatonin instead. It's sold in most pharmacies, is natural, helps with insomnia and cognition and does no harm.
Does he have high cholesterol? Try diet changes instead of rosuvastatin. I know plenty of people who were told to take cholesterol meds and didn't. They are fine and diet changes lowered their cholesterol to normal levels. Talk to your doctor to go over each one of these drugs to see if anything can be eliminated. The amount your hubby is taking is very high.

By Reflection On 2013.02.05 11:03
Well - a couple of last comments.
On treating depression - my bias is less drugs are better than more, in general, but I believe Wellbutrin (generic buproprion) has been good for my husband. It helps "focus" and energy level as well as depression. He's been on the highest dose (450 mg) for years, and I think he's better with it than without it.

On meds in general - I'm not anti-med. Parkinson's is very real, and our loved ones need medications. I don't want to scare folks who are early in the disease so much they don't take the meds that might help them be "more themselves" - I've read many accounts of persons with Parkinsons' who get diagnosed, take their first dose of Sinemet - and are amazed at how much better, more normal, more "themselves" they feel.

This can be especially important because being properly medicated can make it easier, physically and mentally, for our loved ones to be active, and to get exercise. Exercise is clearly the best medicine of all - for depression, for neuroprotection, for helping a healthy balance of neurotransmitters.

Adding some meds - say, Comtan, which I believe evens out dopamine levels, and Amantadine - can help our loved ones function. Even the dopamine agonists that were so horrible for my family - at low doses, they are helpful to many.

So - I agree that optimizing our bodies natural mechanisms though exercise, good diet, sleep - very important. Asking questions, making sure each medication is actually doing what it is supposed to be doing, and isn't doing more harm than good - critical. Loving our Loved Ones, trying to understand their struggles, how hard it is - critical.

My husband became an addict, albeit one on legal drugs, prescribed by (!) a movement disorders doctor who should have known better. It wasn't his "fault" exactly - no more than it's the fault of an injured soldier who gets hooked on painkillers. And expecting a guy on very high doses of a drug that produces impulse control disorders to have the impulse control to stop that drug - well, that's expecting a lot. Where's the line? He refused to allow his family to talk with his doctors, he terrorized us. Addicts will do a lot to keep their supply. And, in retrospect, I enabled him - those who love addicts tend to do that.

By carman96 On 2013.02.06 00:43
Just because they take a lot of meds doesn't mean they are over medicated. I think my hubby needs everything he takes. (13 pills a day)
I know what happens when his meds wear off. He can barely move.
Communication with the doctor is essential. If you think a drug is wrong or the side effects are bad then tell your doctor as soon as possible.

By dkleinert On 2013.02.06 01:20
I agree with all of you about the number of pills our PWP take. My husband takes a total of 13 pills everyday - surely not as many as most of your PWP's do. One of them is a clinical trial drug from a study he was involved in because after 7 years of taking Mirapex and Carbidopa/Levadopa, he was having awful auditory and visual hallucinations all the time. He could not even go outside at night it was so frightening for him. His Neuro was involved in the clinical trial for the new drug, and asked him to participate to see if it would help, and it did.....however, now that added another pill to the regimine.....now he has this head-bobbing side effect since he began taking the hallucination drug.........it just never ends......wish they didn't need the drugs to move - that would be the biggest miracle of all!

By parkinit On 2013.02.06 22:23
A couple of comments on comments made here.

1. Oxybutynin chloride - My spouse was taking this and it may cause severe hallucinations in PWP. Beware!

2. Neuro - try making an appointment without your spouse to stress the importance and impact on your spouse if you cannot speak openly in front of your spouse.

3. Pills - Our neuro stated that after the disease progresses to a point, throwing more pills at the disease doesn't help as there aren't as many brain cells or they aren't functioning normally, so you will get unpredictable results. He stated that, in fact, drugs should eventually be reduced, as stated by an earlier poster, not increased at this point. Personally, we have reduced the drugs because of this reason - they just weren't working or were totally unpredictable in results. The reduced drugs work better than providing an excess amount of carbi/leva.

By makrivah On 2013.02.08 20:49
On February 3, I posted the following:

“My husband, 68, takes 27.5 pills a day taken at 5 different times. I posted the question about how to alert my husband to take his pills. It's not a trivial issue for sure.

He takes carbidopa/levodopa, entacapone, ropinirole, Galantamine hydrobromide, backlofen, clopidogrel bisulfate, oxbutynin chloride, tamulosin, docusate, clonazepam, rosuvastatin, and cranberry high potency supplement. These pills address: slowness, stiffness and tremor; increasing nerve impulse transmission to brain synapses; muscle relaxer; bladder function;, restless legs, anxiety, panic; enlarged prostate and urinary function; pain; cholesterol; blood clots, and last but not least, constipation.”

I appreciate the comments in reply. I felt I owned the forum a bit more information.

My husband does take lots of pills, but the dosages are relatively low. They are administered more frequently to avoid the on/off symptoms. So it really isn’t the number of pills, but the strength and timing that I monitor.
His doctors are superb. Before we retired and moved away from the Washington DC area, his original neurologist was a leading expert in Parkinson’s and other movement disorders. She took many months of medication titration and observations before prescribing anything “official.” Over time, she added, subtracted and changed medications. When we retired, she arranged for his treatment to be handled by another outstanding neurologist closer to us. He reviewed all medications and established his own baseline on top of the original records.

When the discussion about Agent Orange in Vietnam and PD heated up, we registered for Veterans Health Benefits. I’ll skip the tedious (odious?) paperwork and red tape. Eventually, he was accepted into PADRECC (Parkinson's Disease Research Education & Clinical Center) in Richmond, VA. There a team of Parkinson’s specialists (a neurologist, a physiatrist & Movement Disorder Specialist, a psychologist, a clinical nurse coordinator, and an education specialist) work as a team. Since ALL of his PD related medical expenses are covered by the V.A.., we moved his primary PD care to PADRECC. (Saved us from financial poverty!). I was concerned about losing the private sector neurologist as well as what type of expertise through "military medical care" my husband would receive. I should not have been concerned.

Believe it or not… PADRECC and the private sector neurologist are very willing to have my husband continue to see the private sector neurologist on an alternating 3 month cycle with PADRECC. (So far medicare pays some of the private sector costs.) His medications are carefully monitored. The doctors do listen to me, but there is frustration. You might recall my very first post when I asked about “patients performing above normal during doctor visits.” Since that post, I’ve learned that the private sector neurologist welcomes and encourages emails from me when I have questions or concerns. On my initial email, he responded on the same day!

I’d rather not be dealing with PD at all, but it is comforting that the medical community has our back.

One more thing. Even if my husband doesn’t feel like it, he goes to a 60-90 minute exercise program designed for PWPs three times a week (M-W-F) and plays 18 holes of golf on T-T. Of course, those activities completely exhaust him and that’s the only thing that gets done that day, but he is up, out and moving. It also keeps him in touch with his buddies… who are saints with their patience and understanding.

Hmmm I had no intention of writing such a long post. I guess I had something to say. Once again, having found all of you on this fabulous forum has been a blessing to me. Having a shoulder to cry on or even an understanding heart is one piece of the puzzle I didn’t have. Thanks for being there.

By parkinit On 2013.02.11 08:44
What I'm going to say may seem an oxymoron to some of you. We HAVE reduced our pills, and we still take 34 pills a day. My spouse takes carba/levo every 2.5 hours. He also takes pills for high blood pressure, to thin his saliva, and for arthritis. He would be horribly stiff if he didn't take all his pills and at the frequency in which he takes his pills. He has severe arthritis, bulging disks, pinched nerves, etc., in his back and was recommended for surgery, but I convinced him not to do it (for now), because of the high risk due to PD and his age.

He also takes a few natural supplements such as vitamin C, Vitamin D3, cranberry, and melatonin.

This seems like a lot, but the last few days, I've noticed he probably needs the pills even more frequently than this. I see his face masking and him getting stiff about 15 - 20 minutes before his next dosage is due.

The decline. Argh! I see it progressing. There is nothing we can do to stop this tidal wave from eventually crashing over our heads. We fight it the best way we can. We try to make our spouses as comfortable as possible, without making major impact to their mental abilities. It is a fine balance, and I wonder if eventually, there is no warding off the mental issues with our situation. I've heard the mental issues are more severe with those who suffer from the stiffness versus the shaking. We have the stiffness. If I allow these thoughts to take over, I become fraught with anxiety about the future. I don't hold the future for me ou my spouse. I cannot control the future for either of us.

The sun has been rising as I type this to remind me it is a fresh new day. We will wipe the slate clean and start over again and we will, as I bid all of you, start fresh and try your very best to have a great day.

Hugs to all,

By lurkingforacure On 2013.02.11 19:02
I'm shocked to hear how many pills people take, too. I think most PWP are very overmedicated and that is a result of many docs just upping the dose every time the patient walks in the door. In our case, our neuro is quite conservative, but we are even more so, as we have read that the more sinemet you take, the more sinemet you WILL take. We take no more than 4 25/100 a day and are almost 7 years into this journey. I have read of people who did not even START taking sinemet until their 8th year after dx! Lots can be done with exercise, good eating, agonists, and even mucuna/papaya/fava beans...you can google those things and PD and see the recipes and results people claim.

They not longer do this routinely, but you used to be able to take a "drug holiday". Google this term, and you'll see that it literally can reset the body to new sensitivities to levodopa. In other words, the body becomes tolerant to sinemet over time, and needs more. Yes, the disease progresses, I know that. But this is beyond that. I think it's pretty acknowledged that sinemet is addictive, not like LSD of course, but the body builds up a sensitivity to it such that more becomes necessary over time. I have read that doing a drug holiday can literally reset the neurons back to the sensitivity they had when you first started taking the drug. Problem is: abruptly stopping PD drugs can be fatal (google "neuroleptic malignant syndrome"), so most docs won't have anything to do with a drug holiday. You have to usually do it in a hospital, under medical supervision. But it is an option, you just have to find a doc willing to work with you.

I don't know what we will do if we get to the point of taking 20+ drugs. That is a lot of pills, and you all are such awesome caregivers. As it is now, we split our pills into 1/2s and 1/4s to make them last, and the schedule is a pain, but lets us keep our dose low. For now, it works, and I pray it keeps working for a very long time.

I just wanted to share about the drug holiday, in case anyone was interested. BTW, my husband has had a few times where he has misplaced his pills and missed some doses, and felt great: clear, moving smoothly, no pain, it was really weird. But then the demon kicked in and he had to take his meds. It really made me wonder how he would do if we had him in a hospital where they could give him painkillers while he titrated down/off his meds...but our doc won't go for it!

By karolinakitty On 2013.02.12 10:39
I would like to add to this post.. I know I haven't been here in a long time and there are some new people here...so to you older ones I apologize for the repeat but I think some need to hear my Jim's story....It is very important to be strong with your doctor and not take no for an answer or find a new doc.

When Jim was first diagnosed they put him on Requip. It did work, but, as the doses went higher, the Parkinson's progressed. Yes, I stated that correctly. As they increased the amount of requip he was being given his Parkinson's seemed to be increasing with it....the more requip he received the worse his symptoms got. The neuro didn't see it this way, he saw it as his progression worsening. At one time Jim had 14 different medications. Three of those were PD meds, the others were for all the other issues he was having at that time. This was about a year and a half ago.
He had narcolepsy, incontinence, high blood pressure, high blood sugar, severe constipation and diarhea, he could hardly walk with a cane, his legs were swollen beyond belief as we saw regualrly a therapist who wrapped his legs, he got a staph infection, his immune system almost shut down and was regularly getting severe sinus and bronchial problems. He took freguent naps, wandered the house most of the night. Had small obsessions, was extrememly ceative, obsessed with his creativity.

Today, after going through an hellacious withdrawl from Requip, as it took from Spetember of 2011 until May of 2012 to get him off of it, in a step down manner. I say this because I can't even describe what going down 2 mg did do this man. The doctor was ready to put him in the hospital and induce a coma to get this drug out of his system....Seriously.....if what we were doing didn't work. Well, he didn't go into the hospital but it still was sheer hell coming off that stuff. He now takes: Sinemet 25/100, Klonopin (only as needed) aricept and a kicker sinemet 10/100 (as needed).
From 14 different medications down to 3...of course that saves in our pocketbook as well as his life. His regiment on Sinemet is every three waking hours...but for the most part..he sleeps at night, doesn't even use a cane anymore and when we went to NIH this past November they were astonsihed at how well he was doing and from all visible signs, you can't tell he has PD...the regiment is working for now...we know it will get worse... but after looking death in the face 3x in the hospital.....We are extremely happy!!!

One thing we have learned through all this is that while some meds work for some people....they don't work for all....over time any particular drug can cause havoc..not just requip... the thing is to always diligent in looking for signs, even if it seems to be progression...don't look at it this way.....ask your doctor, no, tell your doctor...I think my meds are screwed.....at least my body feels like it....
Jim was blessed that he didn't have the sexual, gambling and other obsessive problems, we iddn't lose our house or all our money to them, but we sure lost it to all GSK the makers of Requip and all the other drugs he had to take to expel the side effects from it.....sometimes basic is better than anything else.....


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