Hospital Adventures: Parkinson’s and the Duodopa Pump.

No, not me. I wasn’t the one admitted into hospital.

My father is trying a new treatment for his Parkinson’s. It’s a pump that injects medicine directly into your intestine, rather than having to take I don’t know how many pills a day. (Well, yes, I do know, it’s about 22.)

The wonders of medicine.  Just last week, my father’s medication went like this:

– 7am. Quite a bit of Levodopa, I think it was 175 mg taken in two pills.

– Between 10am and 10pm, at least one pill every two hours.

– 12am Another few pills to get him through the night.

Sometimes he was overmedicated and his movement was all over the place. Too much levodopa, which is converted by the body into dopamine, can cause dyskinesia which sends your limbs flying all over the place. This can be quite dangerous, especially when you’re trying to use your knife to cut your meat.

Other times, he was so stiff he could barely move: during these “off” periods he probably had very little levodopa left in the body. If you think of all the things that affect how well you digest a medicine when it gets to the stomach and how your body absorbs it, you can see that it’s difficult to find an oral medication that works continuously.

Now he’s trying some new medication, which is supposed to even out the effects of the medicine, rather than producing these peaks. This new treatment comes in the form of a cartridge, which has Duodopa, a mixture of levodopa and carbidopa (the latter helps the uptake of the former). Because this is pumped directly into the intestine, the stomach is not involved. Because it’s pumped regularly by the machine, you don’t get the highs and lows you suffer with the pills.

We’re half-way through the process.

Five days ago we went into the Ramón y Cajal hospital in Madrid and my father had a tube fitted through his nose down to the small intestine. In this way, he can be treated with the medicine before going into surgery, to make sure he can tolerate it. We had a nurse who specialises in this pump stay with us these few days, to monitor my father’s progress and also to teach us how to use the machine. This is a luxury. His post is paid for by the Parkinson’s federation and the benefits are two fold: for us, we have our own particular, specialised nurse. For him and the federation, we’re providing lots of data not just on the progress of the disease with the medicine but also on how informed we are about the pump etc etc.

From http://www.nature.com/nrneurol/journal/v5/n7/fig_tab/nrneurol.2009.84_F1.html

During the few days we were in the hospital the nurse played with the different doses, as you have to find a dose that, when released continously, makes the patient stable. The pump needs to be switched on and off every day. So it will need some getting used to but it’s the best system around for administering the medicine.

We’ve been really lucky and we’ve been able to go home for a couple of days, before the operation. I think this should be part of the test period, as many things change when you go back home. For example, my father has started drooling. Even though this is common amongst Parkisonians, it’s never happened to such an extent with my father. At the hospital, it didn’t happen. Why? Because he was lying down for most of the time. Now that we’re home, he’s upright. It might be a reaction to having a tube up his nose or due to the low medication. More likely, it will be a bit of both.

Luckily we have the internet and have found out that the best way to stop drooling, is to hold your head upright. As a short-term remedy, it seems to be working.

In three days we’ll return to the hospital and he’ll have his tube fitted. This will just be a piece of intestinal tubing which will start in his intestine and leave his body via his belly button. They will fit it through some small incisions (similar to those through which my appendix was extracted a few years ago) and my father will have a small appendage coming out of his belly. Through that tube, he will receive his medicine from then on.

I’ll keep you posted – literally.