Earlier this week I had an appointment with The Professor.
It felt like a long time since the last appointment, and it was: almost six months. A lot has happened in that period but I suspect check-ups every six months or so will become the norm from now on.
The Professor was half an hour late and seemingly in a hurry to make up time. He rattled through the routine checks on my movement and I told me I was doing well on my medication. He was amused about my Candy Crush addiction, though thankfully, having reached level 1,000 (which starts with a cool "M" formation of green candies in case you're interested) I am finally bored of it and have largely stopped play.
On the more important question of my possible heart failure, he agreed the symptoms were most likely due to the pramipexole but he was not overly concerned. He told me he had come across cases of tightness in the chest which had settled down. So we agreed that I should continue with my current dosage and drop down a level if it didn't improve within a week or two. Nevertheless he recommended following through with ECGs and so on just in case.
Although he came across as almost dismissive, I found it comforting to hear from the professional. If he's not worried then I feel I have no need to worry either.
I reminded him about my genetic quest and he confirmed that the initial testing he had done corroborated the negative result on the LRRK2 gene. He said he would follow up with further tests on other genes using the blood sample that I had already provided, and let me know the results. So I may not need to fork out for private genetic testing after all.
Finally we talked a little about the future. Fatigue aside, I should still have many active years ahead and he talked about me potentially participating in clinical trials in a year or two. Once again, he painted a bright picture of many drugs under development, as well as more invasive treatments like stem cell therapy, that are likely to result in a breakthrough in a timeframe that is meaningful to me.
Let's hope he's right. The clock is ticking - for both my mother and me - and I imagine the next six months will fly by in no time at all.
The Professor was half an hour late and seemingly in a hurry to make up time. He rattled through the routine checks on my movement and I told me I was doing well on my medication. He was amused about my Candy Crush addiction, though thankfully, having reached level 1,000 (which starts with a cool "M" formation of green candies in case you're interested) I am finally bored of it and have largely stopped play.
On the more important question of my possible heart failure, he agreed the symptoms were most likely due to the pramipexole but he was not overly concerned. He told me he had come across cases of tightness in the chest which had settled down. So we agreed that I should continue with my current dosage and drop down a level if it didn't improve within a week or two. Nevertheless he recommended following through with ECGs and so on just in case.
Although he came across as almost dismissive, I found it comforting to hear from the professional. If he's not worried then I feel I have no need to worry either.
I reminded him about my genetic quest and he confirmed that the initial testing he had done corroborated the negative result on the LRRK2 gene. He said he would follow up with further tests on other genes using the blood sample that I had already provided, and let me know the results. So I may not need to fork out for private genetic testing after all.
Finally we talked a little about the future. Fatigue aside, I should still have many active years ahead and he talked about me potentially participating in clinical trials in a year or two. Once again, he painted a bright picture of many drugs under development, as well as more invasive treatments like stem cell therapy, that are likely to result in a breakthrough in a timeframe that is meaningful to me.
Let's hope he's right. The clock is ticking - for both my mother and me - and I imagine the next six months will fly by in no time at all.
