The things I have learned about dyskenesias in a nut shell.
They are not a sign that you are having fun because you look like you are dancing even if they occur at the beat of your favorite tune.
yes, although most of the time you prefer over being off or stiff, you can’t wait to go to sleep so the movements can stop.
although, they are a great form of exercise you wish you did not have to exercise so much to look so great!
dyskenesias are great for doing the twist and Mixing fruit salad but not for putting on make up or reading a favorite book.
Is there a solution to dyskenesias?
mind you is not an easy feat….
The first thing to remember iS that is much easier to prevent than to stop once they occur.
Key points women are more likely to develop dyskenesias than men.
altough, We as patients know our bodies best and know a lot about Parkinson’s disease we should not manage our own symptoms without the guidance of a professional (MDS).
One, because it is very hard to be objective when it comes to our own disease state.
Second, most of the time what we intuitively think should be the right thing to do is not always the BEST treatment plan for the long run of the disease…this is where experts like myself and other movement disorder specialists come in handy.
Third, as I have mentioned many times before, anyone can treat Parkinson’s in the first stages because it will respond to any and all PD medicines; however as disease advances the expertise in the art of treatment provided by a seasoned specialist is indespensible. This is where knowing how to treat rather than what to treat with becomes crucial.
Fourth, when I was in practice it was common to see my first stage PD patients 2-3 x a years unless they needed something because they were pretty autonomous; but as Parkinson’s progressed the frequency of the office visits increased as should your visits to your physicians. It was usually every month to every 6 weeks evaluation in my late stage disease patients and 4-6 times a yeAr for middle stages. Even though, I understand as a patient we all get tired of visiting and going to the doctor, unfortunately this is the type of commitment that is required to keep DYSKENESIAs at bay and control before they become intrusive by adding medications like amantadine, Keppra, zonegran, comtan or Tasmar (or STALEVO which I love because it has so many doses ranging from 50 mg to 225mg) and adding long term release intermixed with short term and intermediate release. Also things like DBS and other surgeries like pallidotomies; apomorphine and even Botox injections if have focal DYSKENESIAs or dystonias are great treatment options with proven benefit and low risk in the right hands of experienced physicians.
Fifth, although certain autonomy is allowed for patients it needs to be evaluated frequently because invariably most patients will overdose creating more side effects and DYSKENESIAs. More is not always better…we feel bad can’t walk, move, talk, swallow so we not only increase our doses but start increasing frequency sure way to develop DYSKENESIAs faster ! The key is to mix dopa agonists( especially NEUPRO because the continuous release will potentials the effect of levodopa giving it a more continous star in your body without having so many peaks and valleys), MAO inhibitors along with dopamine in various forms…don’t be afraid of taking several types of medications this is how you get the most benefit without having to take such large doses of levodopa and keep number of times you take medications down ( e.g. 4-5 x a day instead of every 2 hours). We have so many new choices now.
Sixth, remember that dopamine agonists and amantadine effect usually work for several years in the range of 5-7 years after which their effect starts to wane but after a small period of rest ( 1-2 years off these medications) they can be again reintroduced having again a positive effect.
Seventh, It is recommended that around the time you enter the middle stages of disease (3-4th stages) every patient should start keeping a calendar of every medication taken. This needs to include time of intake of each medicine along with name, how long it takes to kick in ( what do you notice when it kicks in), how long each medication last, can you tell when it wears off- what do you notice and the does medicine wear off suddenly. your doctors usually have copies of these calanders in their office, you can get from them or get from the website Or create your own. For instance, I can tell you that my azilect helps my pain & walking, my Neupro helps my vision and my STALEVO helps my brain feel “on.”
Eight, most important advice to prevent and stop these intrusive involuntary movements which make our lives miserable is early DBS before they start…if you Wait till after they start it will take longer to find right setting. when DBS setting is adjusted in brain It is imperative to adjust medications at the same time for maximum result so need to find a doctor who can program in office and has extensive experience – this is one of those art things where experience truly dictate outcome. Patients with DYSKENESIAs by definition have already more advanced disease taking more medications therefore adjustments have to go even slower for maximum results which can be extremely frustrating. so find someone close by because will need a lot of visits; if not able to travel frequently to maximize benefit then should consider doing pallidotomies instead.
Parkinson’s disease is an extremely complex disease encompassing multiple body systems outside of the brain thus in order to have the best quality of life is to have disease managed by a movement disorder specialist who serves as the conductor in a well orchestrated performance involving many other subspecialties (including Gi, neurosurgeons, dermatologists. Urologist,internist, anesthesiologist, ENT, and ST, PT, and OT). Together they can allow you to dance in whatever fashion you desire without the presence of DYSKENESIAs.