I would like to know why compliance is generally poor in pwp and worse still in you g onset Parkinson. This includes not taking medications

[isis6361]

Or taking more drugs than recommended or missing dosages. The same with physiotherapy and recommended exercises.

[soup]

Although I do not have Parkinson's I, along with my husband who does, organise a Young Onset Parkinson's group in Cornwall. From conversations I have had with members I think that reasons for non compliance are complicated but fall into several camps and sometimes more than one at a time.

First of all are those people who are still in denial to some extent and are wanting to tough it out and not give in to needing medication and even if they have the correct meds may only take it when they feel they need it.

Then there are those who have been shocked by the overt dyskinesias displayed by some people in meetings that they have visited. They are scared by the thought that this is their future and then find out that most people think it is an inevitable and rapid side effect of L-Dopa meds. They then try to take as little L-Dopa as possible to delay the onset of dyskinesia. Once the fear is in their heads it is difficult to get them accept that many people are prepared to trade dyskinesia or the risk of it, for mobility and clarity of thought that good levels of medication could bring.

This, by the way, is one of the main reasons we started a YOPs group, so that people could meet others who do not demonstrate such obvious signs associated with the condition and to allow them to come to terms with their diagnosis in 'safety'.

Depression and anxiety are significant in Young Onset Parkinson's and people with these quite often scour the net for hope. Many forums are full of people who report side effects of medications whereas those who get great relief and significant improvements in quality of life rarely report this.

Young people with Parkinson's do not necessarily want to use pill timers which would help them regulate the timings of their meds and rely on a partner 'nagging' them. They do not want to feel different from their peers and part of an old pill popping population.

Organisational skills are sadly affected by Parkinson's.

Those people regularly over medicating may not have accepted that the drugs can only do so much. In the modern society a tablet should make you feel normal. If it doesn't have another one! It can be very difficult to accept that the best you might achieve is an acceptable quality of life.

No judgement is implied here, just observation.

An interesting research project has just started in Sheffield (Dare I say it, England) on, and I quote

"Psychosocial factors and impulse control disorders in Parkinson's

The team at the University of Sheffield are trying to understand some of the symptoms relating to impulse control as a result of Parkinson's or Parkinson's medication. The team are using a short questionnaire to ask people with Parkinson's what they think about their condition to understand this further. Where: UK-wide Who: People diagnosed with Parkinson's Deadline: February 2014 Funded by: University of Sheffield Need more information? Psychosocial factors and impulse control - participant information sheet (PDF, 153KB) Contact Jack Garlovsky, University of Sheffield 01142 [e-mail]" This is from the Parkinson's UK website

parkinsons.org.uk/sites/def...

From what I have gleaned from people taking part, it covers more than just impulse control disorders. Perhaps we could persuade somebody to look at this question about compliance. I'd love to see the answers to that!

I look forward to seeing replies from people who have Parkinson's.

[marmaduke123 in reply to soup]

Hi soup...I found what you say very interesting. Thankyou. And it has to be one of the major subjects with the disease. I put up my hands and plead guilty for not taking meds as I should. But I think I fall into the bottom. Per cent in that I think it's in the sheer repetativness of taking those pills out of the cupboard opening those containers etc.i thought by getting preloaded boxes it would help but no. Having not had to take tablets before I got pd except for occasional antibiotics I just find it such an overwhelming tiresome thing I have to do 3times a day. For want of a better description. And of course the lack of dopermine etc comes to a head if I don't follow through the day as prescribed but I find sometimes I will take the consequences rather than the constant tablet taking.if only it were one shot once a day.im sure people will say I'm lazy but I think it's deeper than that. Is it a form of compulsive behaviour redirected? Is it a recognised syndrome? What?...

[isis6361 in reply to marmaduke123]

Great reply thank you I am using all the feed back on here to deliver a lecture on non compliance to separate teams in the uk. Understanding g Parkinson's is complex and I am a pdns working with around a thousand patients and all I learn about the condition is not from books but from people living with the condition such as your self

[isis6361 in reply to soup]

I am a pdns working with around a thousand people living with Parkinson's and their families but wanted to get feed back from outside my service . I work with parks uk and cureparkinsons as well but on here it goes more world wide and I wanted to get feed back from outside the uk as well.

[Jim_Adams in reply to soup]

Hi soup. I'm in a swamp in South Carolina, USA. I read your question and the replies so far, and I think that some of the many problems you mention can be attributed to the fact that in the UK, a large percentage of PWP are medicated with agonists, or agonists along with carbodopa/levodopa. Over here, that has kind of run it's course, with the PWP networking with each other about agonist's various side effects. Many lost their spouses, homes, etc. to compulsive behaviours, and have since figured out that agonists were to blame. Although each person is an individual, and for each, different kinds of meds help them, switching away from agonists and using different choices has helped alleviate some of the problems that you describe. Hope that helps. Be well always. Jim.

[isis6361 in reply to Jim_Adams]

We have more poor compliance with ldopa having to be taken several times a day than once a day agonists for obvious reasons and see dopamine dysregulation in others who take much more ldopa than prescribed. Impulse control disorders are more reported than dopamine dysregulation but both are as destructive. We have to be careful not to replace icd with DDR but to try and reduce the need for more and more dopamine as the condition advances.

[soup in reply to Jim_Adams]

I think that most people are now aware of the potential problems with Dopamine Agonists and it would seem that the Parkinson's nurses, consultants and spouses are now quite vigilant. Yes, I know people who have experienced impulse control problems with DAs and at least one has lost all financial stability. However, my husband has not experienced these difficulties to any large extent and it has delayed his need to start L-Dopa. We raised the DA dose slowly and capped it when there was any doubt. So far, so good.

[isis6361 in reply to soup]

only 17 per cent of PWP tend to be affected by ICD issues but if they have one they tend to have more than one. They also tend to have a predisposed personality. Also may have had issues pre diagnosis. Some ICD is positive as it tends to life patients from depression but its getting that fine balance. There is also the risk of becoming ldopa phobic which is also not good. It really is about balance and doing what is right for that person at the right time with the right drugs.

[etterus]

Apathy is also a common psychological trait. I used to be apathetic but now I don't give a damn.

[isis6361 in reply to etterus]

I love the answer but I actually hear this a lot in my clinics and it is a reason why medications are taken ad lib you have to care to want to behave and be controlled maybe

[macdavid in reply to etterus]

I know the feeling and like to call it damnpathetic

[PatV]

I don't find this to be true at all. Most pwp's try very hard to comply and in fact in the literature there is a phenomenon known as Parkinson's personality which basically includes the traits of complying with meds and other treatments. The only time I'm aware of when we get out of whack is under the influence of dopamine AGONISTS. I had a terrible time with compulsive behavior. Why are you asking? Are you a caretaker or a pwp?

[isis6361 in reply to PatV]

Sadly that is not the case and more so in younger patients hence why I. Asked the question. Consultants and specialist nurses report back this problem from all over the world. The biggest reason for poor symptom control in clinic and worsening of their condition is often poor compliance. Pharma have many statistics on this especially in advanced disease.

[PatV in reply to isis6361]

Are you pwp?

Just wondering

[isis6361 in reply to PatV]

I am a Parkinson's nurse specialist from the UK working in London

[isis6361 in reply to PatV]

ITS not just agonists it is also taking too much dopamine that leads to dopamine deregulation which as a nurse is a difficult to manage as ICD behaviours. Don't look at medications being good or bad as that can create phobias it really is about what is right for a PWP at that time but regulation of medication can be difficult hence why I ma trying to get a PWP perspective on compliance or non compliance in Parkinsons

[quirkyme]

apathy, inertia, feeling ashamed of having a disease, discouraged, depressed, including the ability to start new things or your brain losing its 'executive functioning' (ability to plan, organize, follow through to completion). My husband has PD and is on agonists. He is med compliant but manages to avoid exercising and being physically active (two different things).

One facet of depression is isolation (so PD patients is they hibernate, don't get a chance to meet/interact with people, and they don't go out as much as they used to--so less stimulation). The second facet of depression is something called anhedonia. That's the inability to feel pleasure or enjoy life, even though you are capable of doing many of the things you did before. Withdrawing, not being among people you would have relished being with if you hadn't come down with PD, and lack of pleasurable experiences. No fun, no humor, no play. So then what's the use of getting up in the morning.

PWD (people with depression, like me) have to motivate themselves and manage their lives in order to keep going and do those things that will make us feel better: about ourselves and about being in our world. PS depression affects the whole body (like PD) and it affects the immune system. PD doesn't shorten a person's life appreciably. Clinical depression does! 15-25 years, I think is the figure. PWD (pw depression) more often suffer from heart disease for example. All told, I think learning about depression can help someone with PD learn how to motivate and learn how to have a program and follow a daily program.

[etterus in reply to quirkyme]

You have described my situation spot on.... the apathy, anxiety and depression are as debilitating as the motor degradation. Maybe more. I have to talk myself into almost everything. Even things I look forward to require a pep talk.

[isis6361]

Thank you for this. It is what I see in clinic and more in advancing disease. Physiotheriapist and speech and language therapist suggest the same. Interestingly with OT and new equipment. So many keep buying new equipment that they either never use or use once and just store.

[Melodysam1890]

3 years on Meds & they have given me a new lease on life - sure it's a headache to take Meds 3x a day, but it gives me precious time with my husband, family & friends .. Sometimes the nausea & dizziness becomes an irritating factor, but overall the Meds are a life-saver .. & honestly, if someone has a better solution, let's go with it .. We can & should do the best we can with what we have where we are - we only get to do this ride one time ...

[isis6361 in reply to Melodysam1890]

so compliance is important for you to maintain a QOL. Non compliance may lead to the opposite? are these your thoughts?

[Joanne_Joyce]

I can't imagine failing to take my Meds on schedule or skipping my exercises. I have to do everything I can to function well enough to carry on with my life for as long as possible.

[isis6361]

Do you fit your drugs in around your life ? Or are you able to have a life around your drugs?

[etterus in reply to isis6361]

I never miss a dose of c-l dopa. It is the best anti anxiety/depression med I have found plus it inhibits the dystonia in my feet. It also inhibits the bradykinesia.

[Hikoi in reply to isis6361]

Isis asks Do you fit your drugs in around your life ? Or are you able to have a life around your drugs?

Depends on stage of the disease in my experience. I have to fit my life around my meds now but not in the past.

[isis6361]

While working on this presentation and copying all the replies from here I can see a picture appearing. When the medication improve the pd symptoms with few or no side effects they tend to get taken on time with compliance. Also where there is no depression or apathy compliance is more likely to occur

[Hikoi in reply to isis6361]

Not sure I would draw that conclusion yet. After all is it the compliant who are responding to your question. :).

I think Soups comments on denial and fear are very relevant.

Also we get conflicting advice or information particularly about long term effects of L Dopa and in this vacuum we each create our own version about what will happen to us. If we fear dyskynesia i think can often avoid regular medication.

I think there is a fairly widespread phobia about starting L Dopa then once started about not taking too much, so being irratic or unreliable about taking it. Eg i heard my friend say yesterday i take sinimet only when I 'need' it.

I suspect there are at least two types of pill takers, the on time always and the the ones who take there pills in response to the symptoms they have at the time.

[quirkyme]

My husband takes his meds but we don't notice anything major if he misses a dose. He's not on Ldopa or other drugs like that (yet?) Sometimes some fading if he's tired.

isis, I think you are right, depression/anxiety/apathy lead to less compliance.

I think from having worked closely with people with all kinds of depression, including 'situational depression', which the PD experience sounds like. The situation of having PD is certainly challenging and something in PD interferes or overwhelms our coping, like when we've faced hard or difficult times in our lives earlier on.

The one thing I forgot to introduce was the idea of 'acedia' which is what they called depression in the middle ages/before modern medicine. It's the inability to start/initiate new things. Sometimes my husband can't get out of his own way, to put it bluntly. I asked him if he was able to help me with some outdoor work (piling up brush) and he was disinterested in. It's not that he can't physically do it; it's that he's not interested in doing it. Acedia has a moral onus to it, like a person is lazy. But depression is like that. It steals our motivation and often our hope that things can get better.

But we have seen that his symptoms CAN get better as he/we find a way to work around a disability (like feeding himself). Diligent practice can help retrain the brain or find new brain pathways in order to get back on track. But that takes enormous motivation, commitment, self-discipline, etc.

And sometimes it just seems overwhelming even to begin. Point being that this can be neurological and psychological/psychiatric. The latest work from the study of the brain shows that neurology and psychiatry are much closer than has been supposed up to this time.

All this takes a lot of finesse on the part of the caregiver. It takes a partnership. Someone here said humor. I agree completely. Without humor we wouldn't last a day.

Here's a definition of acedia: sloth; spiritual torpor or indifference; apathy.

[Hikoi in reply to quirkyme]

Quirkyme

You have described the depression and mental problems of Parkinsons superbly. -

Trouble initiating activity

Loss of interest in things we used to enjoy

Lack of motivation, apathy

Prone to anxiety

Also our thinking slows down and it is difficult to multitask as the brain cant work fast enough.

I dont believe we can talk ourselves out of this or that we are lazy but that these are all due to the changes in the brain due to Parkinsons and lack of dopamine. Exercise is very helpful and a positive attitude but I find that the best treatment is carb/levadopa. Like etterus it noticably lifts my mood.

[quirkyme in reply to Hikoi]

Hikoi, I'm sure you are right. I'm speaking out of my husband's experience and my own lifelong struggle with low to medium level depression. I'm trying to compare and contrast between PD and depression PD is progressive and depression is chronic, at least with me. So what are the overlaps?

I'm glad carb/levadopa helps with this and noticeably lifts your mood.

What a hopeful thing that is!!!

In June we went to a conference featuring Dr. James Friedman from Butler Psychiatric Hospital in Providence and well known for his work with PD patients and his writing and speaking. He said, he wanted to find some way to collect and collate all these findings such as you have made. Maybe you or others might help with efforts to pass on the insights and discoveries you have made about your own dealings with PD. Maybe together all these bits of lived experience might prove to be meaningful.

Will try to post his email.

[Hikoi in reply to quirkyme]

Thanks for your interest Quirkyme

I am interested in the non motor symptoms of Parkinsons so that includes depression (affects about 40% of us with PD) and so read as much as i can.

Heres something i just found.

kcl.ac.uk/iop/about/differe...

[isis6361 in reply to Hikoi]

thank you for this. I see this is clinic so often and as I am in the UK in London we use the non motor questionnaire for all patients and these are highlighted as issues by the pwp and their families, hence why I was encouraged to place this question on here to see how extensive this is throughout the parkinsons community

[marmaduke123 in reply to Hikoi]

hi hikoi...the above four headings are exactly me and to a point that i feel they have overtaken the movement problems. I feel this is being under recognised and almost dismissed by the medical proffession. once they see you walking, talking and sitting "normally" they think you are fine. why is parkinsons presented as an illness effecting the movement part of the brain and not the thinking, motivation etc . and why isn't this checked out everytime you attend. all they ask is how's the mood . well i'm not depressed i'm not crying constantly, i haven't taken to the bed so i'm fine i say. but in reality I can't focus or concentrate for very long, i find it hard to motivate myself ,i'm not enthusiastic about things i used to be, i do have higher levels of anxiety and I can only handle one thing at a time all of which have affected my quality of life more. It's not the diagnosis i've always had a positive reaction to having pd. ive never let it get me down and find laughter is a great medicine. so what im saying is that its the pd/the lack of dopermine or whatever other chemicals that are not only affecting the movement part of my brain but are 100% affecting the cognitive side as well and should be tested and recorded as importantly as movement. maybe isis6361 you could include that on your presentation to make it compulsary to check the levels of cognitive as well as movement levels at each hospital visit and to acknowledge more about it to their patients. because quite honestly only through other peoples input on this forum have i gained confirmation that i'm not going mad....

[Hikoi in reply to marmaduke123]

Marmaduke, so good to read this, thankyou. Yes the non motor symptoms are well overlooked and so significant. But I think things are gradually changing. If you click on the link i gave above there is an article about this. Also there is now a questionnaire on non motor problems which i believe Isis uses with all her patients. After this discussion i am planning to print it off and take it to my appointment next week. Maybe i can educate my neuro to start using it.

It certainly is reassuring reading your post, it could easily be talking about me!

[isis6361 in reply to Hikoi]

The feed back on here has been very useful on compliance issues. The nmsq only takes five to ten minutes to complete and if you fill it in before going into you opa you will be well armed with the correct information. It is an essential part of cari g for the person with Parkinson's to understand the non motor issues such as depression and apathy and more important constipation as this has such a negative effect on pwp and medications given orally often fail to work as a consequence if thiswork as

[isis6361 in reply to marmaduke123]

Non motor symptoms are the dominant features of Parkinson's and is the issues that most impact on the PWP and their families and friends. By simply using the nmsq in clinic or filling it in before you go into clinic to see your professional will reveal all your issues including cognition and moods. Each patient in our service is given an nmsq prior to coming into clinic . Each symptom is treatable with either medications or physio speech and language or whatever other specialist service intervention is needed. Unless we as professionals ask question the PWP doesn't always recognise that their problem maybe related to their parkinsons. It doesn't take long to fill in and read back and is evidence based. Laughter stimulates endorphins which in turn stimulates dopamine as does exercise .

[quirkyme]

it's so good to see what's going on in GB. I sometimes think the stigma about depression is so great hereabouts and Americans are generally so outwardly focused, that they miss the inner experience of illnesses such as PD. I'll pass this on. Certainly that is what I'm seeing, poor concentration, apathy....

I also see indecision. Given choices (decisions on having a job done on the house or whether to eat out or in) he can't decide.

[Jupeter]

My personal experience is that I mean to take my meds but frequently forget. This is usually due to feeling OK, then a sudden realisation that I should have taken a pill 30 mins earlier. Given that the Stalevo takes nearly 45 minutes to begin to take effect, I am then faced with about half an hour of immobility.

Also, while the Stalevo effect can last for maybe an hour, I often find that concentrating on a task can delay the onset of "down" time by a considerable amount, again resulting in my forgetting to take the damned pill.

A recent 10 day spell in hospital produced a different pattern. I always took my pills on time (3 hours apart), once I had convinced the nurses that I would control my own meds.

Incidentally, I take a 8mg slow release Ropinirole in the morning, 5 Stalevo at 3 hour intervals, plus a 1mg Ropinirole at night (to stave off shaking legs syndrome). 12 years since diagnosis, I am now 77 and have begun to notice more, though mild, dyskinesia.

I am not naturally depressive and I have never felt the need to belong to a PD group. I do know other people with PD and meet on a social basis with at least one of them. My philosophy is to get on with life and enjoy it as much as possible. So, in October, I will be going to a show by a great Pink Floyd tribute band, Brit Floyd. Must remember to take my tablets!

[isis6361 in reply to Jupeter]

Happiness feeds dopamine and endorphines

[earthdweller]

I'm coming to this discussion much too late. But this is a very interesting question. I'm not (yet) on medication, in fact I haven't managed to get diagnosed yet. But I know that I want to avoid taking medication for as long as possible, mainly because I've seen the whole thing play out with my mother and her experiences. I know that I am NOT my mum, and things could work out a lot differently for me, but on the other hand we are very similar and I'm having a lot of the same symptoms that she had. As I've seen the effects that medications have had on her and where she is now I want to do things differently if at all possible.

That's not to say that things will necessarily turn out differently, whatever I do. Who knows? And that's just my own personal reason for wanting to avoid medication, at least for now. I understand that people have to do what works for them, and I know that lots of people have great success with medications at the right doses with no or little adverse effects.

So I'm not sure how rational that is from a medical point of view, but it seems rational for me, from where I am!

[isis6361]

I work dominantly with young onset and complex . Of course I am not going to support the idea of not taking medications . Non motor symptoms have probably been with you long before your diagnosis . The receptors are struggling enough by diagnosis coping with the reduction in dopamine that a full life or an average day is like running a 2 litre care engine on just a quarter of a tank. However it's individual choice.