This is a topic that has always cropped up in conversation. As soon as I let a few people know that I had what was then Parkinsons, I was instantly regaled with stories of how successful the medication had been in controlling symptoms for up to 15 to 20 years in some cases, so don't worry! It was just a matter of trial and error to get the balance right. So I went down to London, first consultation, I wanted to be put on the appropriate drugs as soon as possible. They prescribed Levadopa [Madopar] the conventional drug treatment and I went home thinking this would transform things. I persevered with the drug for six weeks but felt only a marginal difference in my condition, so I got in touch with the London clinic and discussed it. Over the phone and it was agreed I should have a higher dosage. So I did, and I religiously dosed myself as instructed. Again, nothing much changed and I put it down to not quite getting the balance right. Eventually I reached the maximum dosage with the minimum results. This was confirmed in one of the tests in my five-day stay at the National Hospital for Neurology and Neurosurgery, called the Levadopa challenge. Taking Levadopa should result in at least a 30% to 40% improvement and the test demonstrated that this was not the case for me. It was also, I was told later, an indication that I might have MSA. I was eventually moved on to Amantadine , which I still take. It does seem to make some difference, but not a lot.
Can anybody tell me why drugs have such stupid names that I can't pronounce or remember? For example my other drugs have names such as Hyoscine, Atropine and Ethedrine. I don't see the relationship between the name of the drug and its purpose. Is there any logic in this that I can get hold of so that when asked I can explain and not feel a fool?
Apart from the naming of the drugs, there is the chemist labelling which is always difficult to read as they use a light, black ink, which looks as though it's running out on their printer and is always in a small point size. Seeing that it explains the dosage instructions, I think it needs to be improved or am I one voice on this? However, I am impressed by the fact that I can reorder my prescription through the GP surgery website and the prescription is then picked up by my chemist, made up ready for me to collect. If I can't collect it can be delivered.
Finally for today, I find different dosage schedules frustrating as they have quickly become the regulator of my life. Some are one day others three a day, some an hour before a meal another half an hour before the meal and I'm only taking four pills! What it must be like for others I dread to think. I heard the other day of somebody who was taking 49 different pills a day! Apparently there are horror stories of Parkinson’s patients in hospital not being given their drugs because their regime does not fit into the hospital schedule!! There is a sad case study of this in the latest Parkinsons UK magazine.
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