How can professionals improve compliance in parkinsons?

[isis6361]

[marmaduke123]

cut down on the number of tablets per day. possibly condence them into a more attractive regime. im amazed at the amount some people have to take yet i'm just refering to my experience. At one point i was prescribed the following. stalevo and requip 3 x daily, seroxat x 1 daily, a nuepro patch daily, 1 at night tablet (forgotten the name), 1 donna sachet daily, 2 x daily sachets of movicol, senokot at night and motillium daily for the nausea....now theres not enough hours in a day to take all those and thats every day 365 times a year. Its bound to make you miss a dose here and there. i do not think the proffessionals see things from our side. I try to live my life alongside pd, making pd of secondary importance thats the way i want it to be but if i was to take all the above regime each day constantly then pd would intefere with that balance. it would overcome my life....so i would say think proffesionals, we do not need a tablet for every symptom no life is perfect, try and combine medication into single doses, prescribe more slow release tablets and delay initial medicating until symptoms are seriously affecting the persons quality of life whereaby he/she will find it imperative to medicate in order to get through each day. I feel that i may have been prescribed to early with the result that i didnt fully recognise a benefit from it, yes my writing improved which was my initial symptom but otherwise i didnt feel any different. could this have been a factor?...

[PatV in reply to marmaduke123]

I AGREE. Then I get hassled by my GP because I'm not taking my vitamins. I took them religiously before I had PD.

Also, LISTEN!!!! thanks for asking!

[isis6361 in reply to marmaduke123]

I am playing devils advocate as a nurse and really appreciate your feed back. I do understand what you are saying I believer is patient rmpowerment and self regulation. But in clinics I have many dopamine deregulators and I c d patients and those who just do not comply to drugs physio or salt. Hence why I am asking how we can help

[Lindylanka]

Compliance is a word that is creeping up on us from all directions, not just the PD direction. To a certain extent you need to be in control of your own medication needs, and unless you are wildly non-compliant this should benefit you rather than harm you. The dopaminergic tightrope is one to walk carefully, too little and it does not owrk and too much and there is a payback. We are the only people who know what that feels like, and sometimes we may get ourselves in a muddle with it. Non-compliance is not the right terminology. There should be an agreed amount of leeway that is negotiated between specialist and/or parkinson nurse, and patient. This serves two very good purposes, first that the patient is looking at what is occurring when they take their medication and can report on this accurately when they see their medical practitioners, second it enables meaningful dialogue between those practitioners and the patient, allowing the patient to participate in his/her healthcare.

[Melodysam1890]

Think about what a condensed number of Meds would do to our bodies - the nausea, dizziness, general all-over yuk feeling .. I take multiple Meds 3x a day too plus nausea release Meds -but each one has a reason & I didn't start out with all of them - I started with one & others were added as Parkinson's increased (1 at a time for progressive symptoms only when the symptoms hindered my daily life) .. I guess I'm just blessed to have a good neurologist ...

[Hidden]

isis6361

Thank you for taking such an interest in this issue in your own time - I hope my answer may help even in a small way.

For many people the diagnosis of PD/parkinsonism comes as a great shock and the general population then swamp you with so much doom and gloom initially (very few have positive things to say about it) that there can be a huge element of denial. The next hurdle to be overcome is the decision to start on medication. For me this really felt like a committing myself down the road of parkinson's ... up to that point, OK I had a diagnosis (and symptoms) but so long as I didn't need the parkinson's drugs part of me hoped/dreamed/believed that I might be told the diagnosis was incorrect or I might just wake up and be OK again. Beginning parkinson's medication is the beginning of accepting that there really IS something to be faced - if the drugs help then, it IS parkinson's (we are told)... if the drugs don't help then it isn't. So there is a tremendous mental barrier that needs to be overcome.

Once parkinson's medication is needed/started, it can and should make a brilliant difference (although usually the nausea among other horrible initial side effects are very offputting) so many fall at this first hurdle simply because (a) the nature of parkinson's medication isn't well explained (b) they may be unused to taking more than the occasional painkiller, if that, so are resistant to the idea of regular medication (c) they fail to take ownership of their own health and wellbeing or management of their PD/parkinsonism (d) they initially feel worse, because most PD drugs make you feel awful when you first start taking them.

My condition progressed rapidly in the first year so I was put on medication early, but not only did I do my own research I also had/have an excellent neuro dude who explained what would happen, he then prescribed Domperidone (an anti-nausea drug suitable for people with parkinson's) and told me to take it as prescribed, however well I felt, just for the first six weeks of parkinson's medication. At this point I discontinued the Domperidone, my system had adapted to the PD drugs and I was fine... well, as fine as possible at that point! Each time my medication has been changed, a course of Domperidone has accompanied it and... so far.. its worked well to help the drug transition.

So in addition to (a), (b), (c) and (d) above perhaps folks aren't given the benefit of anti-nausea drugs that can make those for PD/parkinsonism that much more tolerable?

Hope this helps!

[isis6361 in reply to Hidden]

Great reply and really helpful for me and the teaching I will be doing. The answers coming from pwp co firm in a way what I either knew or suspected and in every clinic I have many new you g onset pwp newly diagnosed. Shock sad loss mourning that loss and as you say acceptance

[marmaduke123]

I personally did not feel shock, loss, mourning, sadness or anger. Just acceptance I think the description would be and to keep living as normal as possible for as long as possible. Perhaps I'm not looking too far ahead, I don't dwell on it and except for trying to deal with the symptoms and the medication I never think of it. That will probably shock people and find hard to understand. But it's just my personal experience. Perhaps previous traumas in one's life protects you in some way from the way you react to a diagnosis of Parkinson's disease. I felt nothing we could have been talking about the weather. That's not belittling it any way whatsoever it's a life altering horrible disease. It's just me being honest with you as to my experience...

[isis6361]

Thanks for this. It's not shocking in anyway people all respond their own way. We knowire now about giving a diagnosis but more than that we care more about how we give it. Coiance regulation and how we can help is why I am asking my question