PD patients can definitely lead full and exciting lives, we just have to plan a little differently. If I know I am going to be away from the mother ship (my lunch pail of medications), then I need to make sure I have got enough supply to cover the trip. I am currently taking Sinemet, Amantadine, Azilect, Artane, Lisinopril, and Trazadone and I seriously have an old school lunch pail to fit everything. Amantadine is an anti-viral flu medicine that just happens to help curb dyskinesia. Artane is not really a PD drug, but can help with cramping. Trazadone is for sleeping. Lisinopril for blood pressure, Sinemet and Azilect are for PD. I don’t go anywhere without a full days supply. Seriously, if I got on a plane and I accidently left my lunch pail in the terminal, they would have to turn the plane around. I would never check my lunch box at the gate, if they lost it I would be screwed!
So I had this idea. You know how they are building all these recharging stations all over the country for hybrid vehicles (by the way I love the Tesla designed stations). Why couldn’t we have re-medication stations? Basically a box stocked with all the different PD medications. You would get a card that when inserted would dispense the appropriate medications for which you have a script. Goodbye lunch pail! Wouldn’t that be cool.
So here is the kicker, for my particular situation, I have to take my meds every hour and a half. That can seriously put a damper in ones sex life, “Sorry I need to take a pill break”. Why you ask? Well, since my surgery, I am really sensitive to dopamine (I will cover the surgery in its own post) . It is a balancing act where I am trying to maintain a consistent blood level of dopamine, while minimizing the dyskinesia. Take to much and my arm moves around like a fish flopping on a boat deck, not enough and I have trouble moving (the crash). I was going to try a new extended release formulation called Rytary that would involve three times a day, but it was not on my health plans formulary. It was going to cost me $800 a month, lets see BMW payment, medicine, or food. Needless to say, I did not fill that script. Speaking of which, I don’t know how the uninsured or under insured could afford having PD. Azilect alone cost something like $700 a month. My neurologist jokingly said when we discussed Rytary, that it would probably be cheaper to get deep brain stimulation surgery!
So that is it for now. I bet you can’t wait to hear about the surgery :). If you are enjoying these posts then please share with others. The more the merrier.