A small round white pill

One of my containers for my morning doses with one morning dose laid out.

Every morning I have my phone alarm set to ring at 6 am. Every morning, weekday or weekend, workday or holiday, because at 6 am I take my first dose of medication. I take six different pills for my Parkinson’s disease, one to make up for not having a thyroid and one contraceptive. I prepare my morning doses a few weeks at a time in containers with one compartment for each day of the week (see photo) and keep next to my bed together with a bottle of water. That way I can take my meds while still in bed and more often than not, I will go back to sleep for a while longer before getting up. This way the meds will have kicked in when I rise and moving will be a bit less difficult.

What I usually do is that when the alarm go off, I try to silence it as soon as possible, to try not to wake up my family. Then I take out the container and find the right day’s compartment. This is not always easy to do in a dark room and sometimes I use the light from my phone screen to guide me. I empty the content of the compartment into my left hand and count the pills using my right. 1….2….3….4….5….6….7….8, put them in my mouth and swallow with a sip of water.

This morning was a bit different. I woke up at the sound of the alarm at 6 am, still half asleep as usual, I counted the pills in my left hand, almost automatically, silent in my head: 1….2….3….4….5….6….7….. Wait, one more time: 1….2….3….4….5….6….7….. I’m starting to wake up more and process the information… Okay, so one pill is missing… Did I drop it when I emptied this morning’s compartment in my hand or did I make a mistake when I prepared the container for this week? I don’t know which and I really want to go back to sleep so I don’t want to wake up too much. What to do? I examine the seven pills in my hand to find out which one is missing. I have done it so many times that I can recognise the shape of the pills with my fingers, even in the dark. I can actually even recognise and count them in my mouth by sorting and identifying them with my tongue. It doesn’t take long for me to realise that it is one of the small round white pills that is missing. But which one? I take three small round white pills every morning. The thyroid medication has a very distinct groove across the middle that is very easy to recognise and I found that one in my hand. Okay, so it’s either my contraceptive or my once-a-day Parkinson’s medication… I think for a second: Would it matter if I were to take a double dose of either of those, just for one day? I reach the conclusion that, no, it probably wouldn’t matter to double the dose of either of those this morning. With this I make a decision: I take the seven pills in my hand and put them in my mouth, take a sip of water and swallow. Then I take out the eight pills from tomorrow’s morning dose, locate the two small round white pills that do not have the groove in the middle, take both of them with some more water and put the rest back in the compartment for tomorrow. Pleased with my decision, I go back to sleep.

When I wake up a few hours later, I find a small round white pill next to my pillow.

The finest compliment I ever had

Today I learnt that Tom Isaacs, President and co-founder of the Cure Parkinson’s Trust died very suddenly and unexpectedly yesterday morning. Tom is (yes, he still is) one of the most well-known PwP (people with Parkinson’s) in the world and has contributed so much to the global PD community. The world has lost an amazing leader and trail-blazer of the inclusion of patients’ voices on every level of PD research and I have lost a friend, role-model and mentor.

Tom was one of the very first people with PD that I reached out to outside of Sweden. It was in early 2010 and my day job was environmental risk assessments for former industrial sites and other polluted areas. At the same time, I was looking at ways to pursue my passion for helping patients and researchers understanding each other better. I can safely say that I wouldn’t be doing what I am doing today if Tom hadn’t given me his time, listened to me and encouraged me. We communicated via Skype and emails for a few weeks and when he heard that I was planning for a trip to London with my family, we decided to get together for lunch.

We met Tom Isaacs and Helen Matthews for lunch in central London on a Thursday in April 2010, incidentally the day after the Icelandic volcano eruption that put a stop to most of the airline traffic over Europe for a week or so. We had a very nice meal together and didn’t know at the time that our visit to London would be longer than we expected… We had a hotel room booked until Sunday and when we realised that we wouldn’t be getting home in time for work and school on Monday, I reached out to Tom. He and his wonderful wife Lyndsey invited us to stay with them a bit outside of London and we were very happy to accept. The city was starting to feel a bit too much for us with one parent fretting about possibly running out of her medication and the other starting to running out of reasonably priced ways to keep a six-year-old happy.

We were able to get some clothes washed and relax in their garden and if it hadn’t been for the stress of possibly running out of medication, I would have been perfectly happy there. One morning I came down to the kitchen and found Tom feeding the dog. We started comparing symptoms and medications, as you do, and Tom asked me if my meds had kicked in yet. I said: “yes, I think so”. Tom then looked me up and down and up again, apparently weighing that he knew I had experienced my first symptoms of PD 25 years earlier against the (compared to him) small amount of medication he had seen me take earlier. He paused and then he said: “you know Sara, you should be ashamed of yourself”. During his second pause, I silently wondered if I had offended him in any way. Maybe there were unwritten rules that I had missed? He looked at me with a twinkle in his eyes and said: “Sara, you are a sorry excuse for a person with Parkinson’s!”.

Tom, I will never forget you and in your honour I hope to remain a sorry excuse for a person with Parkinson’s for a long time yet!