With good reason though, inspired by a message I received, I decided to post.
The following issues, in my opinion, are not being addressed properly within the whole pd community. (I am in the UK but this could equally apply anywhere).
Ok here we go. (Another lengthy one)
The drugs we take are the ammo we need to fight the war with pd.
You cannot expect any soldier to go into battle with bullets (ie drugs) that don’t fit their gun (ie your body’s personal drug requirement)
Neither can you expect soldiers to fire guns when they haven’t been shown where the trigger is (ie how to take our drugs)
They also need to know of potential flaws in the bullets (ie behavioural problems and dyskinesia)and have a system in place that identifies and stops them exploding in our faces
Also I feel we get sometimes get distracted from the day to day dealing with pd by news of new developments in long range artillery (ie Prosavin etc) and nuclear warheads (ie a cure).
It’s good to have hope for a future victory but in the trenches we need help now.
Back to love and peace and what does this all mean for us.
When I was diagnosed back in 2003 I was firstly assessed as to how far my pd had progressed.
My right arm was pretty useless, I couldn’t write or use a computer mouse and my right leg dragged. Fairly advanced I would say.
I was put on a Dopamine Agonist, Mirapexin which was titrated up (introduced gradually in small increments) until I felt the benefit. I was also given a drug to combat feeling sick called Domperidone. This worked great and I was able to drop the Domperidone.
I was then on 3 x 0.7mg tablets, any need for increase was done slowly. Mirapexin worked for me although it created a problem in behaviour.
Dopamine Agonists (DA’s) were generally used to give us more time before the introduction of sinemet / madopar etc.
My neuro is a PD specialist. I believe he adopted the correct approach generally. Mirapexin was augmented with Selegeline and eventually Sinemet Plus was introduced, which worked very well.
The approach was DA plus Selegeline / Azilect then Sinemet/Madopar
I respect that each Neuro has to make his own assessment and that certain drugs don’t suit all people.
However, judging from personal experience and people I know and looking at the postings on a number of forums the following concerns me:
DA’s are being introduced immediately as a slow release. It’s not as easy (if possible at all) to titrate up and patients may have adverse reactions. People are being told to go up to the maintenance dose of a DA even though they are fine on less and the increase is causing a problem for them. These problems then lead to the early introduction of sinemet.
Drugs are prescribed that interact with our pd drugs, I was personally prescribed a drug in common use that interacted with selegiline. Chemist, GP, PD Nurse, Neuro were unaware until I read the leaflet and pointed it out.
Sinemet currently seems to be, the first drug prescribed either alongside a DA or instead of. Potentially this shortens the patient’s effective life on the drug as dyskinesia could be more likely the longer the patient is on sinemet.
I also know of two people that have been put on Stalevo (Sinemet with Entacapone) as a first drug. Bear in mind that too much of a drug can cause similar effects to not having enough.
There seems to be inconsistencies across the board with our drug administration.
There appears to me to be several areas that influence this problem
I do know that not every neuro is a PD specialist (is yours?)
I suspect that behavioural problems associated with DA’s are causing neuros to reconsider prescribing them, especially with the threat of litigation now prevalent.
I know that some neuros are deemed “unapproachable” by patients
I know that there are inconsistencies in the drugs we are put on at diagnosis, I had advanced pd and was started on a DA others with mild symptoms are already on Stalevo.
The other thing that is not properly addressed is how to take our drugs.
People take them with tea/coffee/milk/alcohol instead of water (sinemet does work well with fizzy drinks)
In particular sinemet needs to be adjusted to suit the individual. Timings need to fit in with wearing off periods
We need to be aware that generic drugs, other meds, constipation lack of sleep stress etc all have an effect.
I am lucky my neuro is a pd specialist but he is also aware of individual needs and listens to what I have to say and accepts what works for me.
So what do we need to happen?
The following is my opinion.
We the Patients need to:
Educate ourselves as to the drugs we take by checking drug interactions side effects. Read the leaflets that come with our drugs. (Drugs.com has an interaction checker).
Take responsibility for our PD. PD is virtually a self-medicating illness. To a large degree the neuro can do no more than hand us our pills and ask us for feedback. We need to recognise this and cut them some slack. We need to ask questions when necessary and not make the medical profession into unquestionable gods. We should not operate a blame culture; instead we should look to what the root of problem is and fix it. I accept there are certain issues where we need to address culpability but these should be recognised as mistakes made whilst trying to do the right thing. We all want the same thing don’t we? We all want to be as well and as happy as we can so let’s support each other.
The Health Professionals need to:
Look into inconsistencies in the drug administration of PD. Ensure all neuros and their support teams know about the issues and that they are approachable and able to answer our questions. We need to be able to ask advice directly to a professional. It would be good to have a resident neuro on the forum that could field questions.
This Website needs to:
Carry on with the good work. Expedite the changes needed to make the subject matter more easily accessible. Encourage the health profession to read, absorb and where appropriate implement the needs of the patient as expressed through this forum.
This site says it connects me with other patients and also professionals so I should be in the right place. I know the site is looking into creating permanent pages for subjects so hopefully that will happen soon and make posting easier.
I feel passionately about this (I must be if I’m potentially putting fishing on the back burner).
We are wholly dependent on our drugs, so we need to get it right.
If we are serious about self-management of PD and making things better then we need to act.
I don’t have the contacts to make the changes possible. It’s the same with the DA/OCD issues.
If we are serious about a patient’s voice then we need to do something. Hopefully this post will strike a chord with the right people before it drops off the page and into obscurity.