” I regret less the road not taken than my all fired hurry along the road I took.” Robert Brault
Many years ago when I first began this journey with Parkinson’s disease as a young doctor there were very few choices in the treatment of PD. since then there has been an explosion of new treatments and many are on the way. The news are a god sent like a much needed rain to a dry and hardened soil. However, they can also cause a lot of turmoil and stress for those of us living with the illness.
Knowing which medicine or treatment to choose and how to use it to get the most efficacy is still a challenge for both patients and physicians. but, in many ways this is a good problem to have rather than no choice at all. As new treatments become approved the possible combinations for treating a single individual increases exponentially. Which means that for us patients we not only have more options but also need to be more patient and willing to try many different medications and combinations to find the right one- this may take some doing and above all TIME! Plus, you and the treating physician need to well versed in these new treatments. In order to accomplish this feat now more than ever the presence of a specialist i.e. a movement disorder neurologist at the helm is crucial.
Both as a patient and physician I have learned that 1) you must have intricate knowledge of a formulation in order to use most effectively plus 2) have intricate knowledge of the person we are dealing with in order to be able to match the two in a positive fusion. This means that sometimes you have to be willing to use a bit of unconventional treatments requiring multiple doses, frequencies and medications to achieve the best outcome possible. I am a primary example of this fine tweaking resulting in my Parkinson’s being extremely well controlled for someone who has lived with it for more than 10 years. The first step to achieving this is being well informed as a patient in order to make the best decision possible given what we know at present. I believe that being a neurologist whose field of interest is PD puts me at a greater advantage but this is something that can be achieved by everyone.
You must start with knowing yourself and your body function. For instance, many people have asked why I have not head DBS especially since I am young and there is good data showing that early DBS is extremely beneficial decreasing disability. The earliest data indicates patients being stimulated after only 4 years of disease. I say to you as I have said to those people- although data is great 1) I am doing great with medication- no need to risk brain surgery although minimal risk is still brain surgery. 2) I am not a good candidate for DBS- I am a terrible surgical patient for many factors and more importantly as far as my PD I believe that my quality of life would be worst certainly if I were to do bilateral. I already have swallowing issues and balance issues both of which are known to worsen with bilateral DBS. plus, not to mention I am already overweight due to meds; studies have shown that women have a higher tendency to put on weight on average 20-30 lbs. I certainly do not need this. Although, I firmly believe DBS is a great therapy and is the standard of care but reality is that not everyone will do well. In order to maximize the benefits of this surgery patient selection is of the utmost importance. Always talk to your physician about the pros and cons and expectations prior to any surgical procedure.
The other thing is that it may take a year or two to find the right combination of medications and as disease progresses there may need to be another trial and error phase not as long but equally challenging for all involved and must be patient. This is not a race to the finish line rather a slow and steady way of life. Do not discard a medication from your tool box because it ‘did not work,‘ it ‘gave you side effects,’ or because it ‘stopped working’. First, we have to ask what is the medicine treating? is it the tremors? the pain? the stiffness? once we know we are better able to access its function. Most PD medications do not target all the symptoms motor or non-motor for sure. some are better than other at working a specific function. this is why most often in order to have the best outcome one must take a cocktail of pills as I do. also important to note that the Mao inhibitors like Azilect in particular usually do not cause dramatic effects unless looking at two specific things- 1) gait – it improves balance and 2) pain and 3) visual problems so if you have neither of these issues most likely not going to notice a difference. However, I and many of my colleagues believe there is a neuroprotective component to this drug making it more than worthwhile to take. further, it has been my experience that although it is a once a day drug it does not typically last more than 12 -14 hours hence I recommend taking it twice a day. we just got approval of a new MAO B inhibitor Xadago which also has glutamate reduction approved for off episodes. We will see how this medication plays out. but the fact that it targets two receptors is a better potential treatment.
All of the dopamine agonists Mirapex, Neupro, Requip can cause sedation, impulse control, and increase sexual urges as well as hallucinations in those that are prone to dementia or have dementia. Mirapex has the most sedation, impulse control and sexual impetus followed by requip. So it is important that if you are already prone to daytime sleepiness or have gambling problems or are ultra sexual that you talk to your physician about not using Mirapex or Requip unless as last resort. Also note that these medicines usually loose efficacy around 10 years so may need to take a small hiatus ( 6months to a year) and return. I prefer Neupro because does not cause sedation, OCD, nor worsen dementia. but, it can cause water retention especially in women. I myself alternate the neupro patch 2mg with 4mg. work great so sometimes have to find the right dose and is not a conventional same daily dose. these are fairly good for tremors, stiffness, and slowness as well as for restless legs, rem behavior, bladder control, mood (some),
The dopamine where levodopa –Sinemet is the gold standard of treatment. We also have Stalevo, Rytary and Duopa. these compounds approximate the natural substance so much better hence the effect is the best particularly when it co0mes to mood, memory and cognition in general. when people have trouble concentration , focusing, multi-tasking, learning, enjoying thins this signifies a deficiency in this chemical. what I have discovered is that levodopa in what ever form is what is required to maintain these capabilities without it we may control, tremors, stiffness, walking but we are going to feel awful, moody, cranky, fatigued, uninterested, have poor concentration and memory in fact you wont feel like you any more even if you look good and are able to do everything. of course this is the one associated with dyskinesia so people are afraid to start and even doctors don’t want to start early sometimes because of this fear which in the old days was much more certain to occur and start sooner. However, with all the medications at our disposal there is no reason to delay taking medication and even small doses of levodopa so you won’t feel like a zombie or sub-human. I started on regular Sinemet but caused lots of nausea then went to extended release which really did not last much longer but was last nauseating then because I needed higher doses and trying to keep risk of dyskinesia I switched and I absolutely love this drug because so many doses and don’t have so many peaks and through and again less GI and orthostatic symptoms. as my symptoms have advanced I could not extend Stalevo to higher doses without causing daily migraines – not worth the pain. thus when Rytary came out, I was first in line to try. I too love this drug and has a benefit unlike the others that I believe it mimics more the natural brain chemical release because for the first time since I got ill I felt like “me!” even my doctor who has known me since residency has stated that I was back!
A couple of side notes on Rytary which are my own personal observation and opinion but merit looking further into. First, I find that this drug is much more constipating than any of the others so have to be ware of maintaining regular bowel schedule. I had hear and read that some people experienced chest pain and arm pain with this drug. I was on it for over a year before I began to have lots of shortness of breath and chest pain with medication- turns out caused by severe hypertension. once we added more blood pressure medication I am able to tolerate Rytary once more. so, if there is family history of heart attacks, stroke especially since women seem to have higher risk of developing strokes after PD may want to talk to your doctor about concerns, monitor blood pressure regularly take prophylaxis for stroke and heart (these risks increase as we age as well). also follow with a cardiologist regularly I do. This medicine may be best suited for people with low blood pressure. nevertheless, if you have high blood pressure as I do does not mean you cant take it means more careful and precise control of PD meds and high blood pressure. I find that taking the medicine staggered works best but I would not recommend doing this on your own without talking to your physician. what I mean is that the recommended dose is 2 tablets twice, three times a day etc. but I discovered among my friends who were placed on this medication at the same time I was at similar doses having disease approximately same duration of time and they are my age, that after a year’s time all developed severe dyskinesia; only difference between them and me is gender ( 4 men; 1 woman). All these people have undergone or are waiting to have DBS. about 6 months ago I began experiencing mild dystonia/dyskinesia which I first attributed to having had decrease of meds due to blood pressure issues. however, once I restarted my previous regimen I quickly noticed that when Rytary wore off I was having the problem. so I began taking them in tandem 1 tablet then 4-6 hours later the second tablet and voila no more dyskinesia and I feel wonderful. prior to this I had consider adding Comtan with it to extend duration.
As you can see even for an expert like myself, there is a lot of trial and error and fine tuning. even addition of medication like amantadine which at one point I could not take because it triggered psychosis. however, our bodies are always changing, our disease is evolving and the illnesses we have at one point may improve or worsen interfering with PD treatments. For instance if you have H. pylori this will cause much more nausea and vomiting than usual plus will render Sinemet less effective – thus if something changes suddenly or dramatically from status quo need to speak to your physician.
In the end knowing your own body, being informed about medications, and having a good rapport with your physician will allow you to make the best informed decision about what treatments are best. Always knowing the end game helps plus another thing that Is a crucial or even more so than the treatment is having continuity of care with the same physician. Only then can they truly give you the best choices available based on your own uniqueness. Inadvertently, sometimes we sabotage ourselves by hoping from doctor to doctor which only creates confusion, unnecessary repeat testing and much disruption and frustration to your own life; because first you don’t allow enough time to build an appropriate patient physician rapport which would guide the specialist to making the best optimal decisions on your behalf . Second the constant change means a change in medications most of the time because each one of us is like an artist who sees the big picture and end result and we work in our own way to achieve that- but each physician like the artist has a different picture in mind- only leaving you the patient completely dumfounded and unwilling to try new things or see the one doctor who potentially could bring the masterpiece together with all the broken pieces discarded by everyone else.
Knowledge is power! Be informed!