So I have PARKINSONS. Now what?

This photo was taken by my husband when we met after I had received my diagnosis and my first medication

If you want the whole picture, read how I was diagnosed first.

So November 11th 2019 it was final. It had been confirmed. No way back. I had met the robot who told me clearly. You have Parkinons, but medication will make you feel better. I had a million questions. I had been warned about Dopamine Agonists. The side effects. They can ruin your life. Change your personality. Make you do really dumb shit.

I was terrified. I had signed a contract for the job of my dreams. At this point, I was thinking that I just had to get through the trial period. So I would be employed somewhere when I would go on disability. I couldn't possibly be able to work now, could I? My brain was slowly dying and my hand was not working. I was emotionally flat and mentally exhausted.

On the night of my diagnosis, my husband and I both cried. But not for long. There are so many reasons to be grateful, and this turning point made me see that more clearly. I have the best family, I live in one of the best countries in the world. And up until this point in my life, I had been very lucky to be healthy and happy. We decided to make the best of it, and not go into that dark place. He looked at me and joked about how he would love pushing me around in a wheelchair and I have learned that everyone is dealing with something more or less serious in their lives. I got Parkinson's. But Parkinson's will not get me. I quickly shifted my focus to be in the present and not in the future. No one knows what the future holds, so why worry. I am in a club I never asked to join, but I have about 7 million people with me. 10% of them are under the age of 50 at diagnosis. I will probably be on medication for the rest of my life. I will get worse, but I don't know when and how much worse. The disease varies greatly from person to person.

"Don't spend a lot of time imagining the worst-case scenario. It rarely goes down the way you imagine it will, and if by some fluke it does, you will have lived it twice" -Michael J. Fox

I was about to start my new job in only a couple of weeks. I needed to be on top. My diagnosis came after I signed the contract, and I obviously hadn't mentioned anything in the interviews. What was I going to do? Tell them, and forever be that sick person at work? Would they notice? Start whispering about me? I really, really wanted this job, I was excited to start and wanted to wake up from this nightmare so bad.

I had been prescribed two types of meds. Azilect, which I was told most people with PD take as it is believed to have a neuroprotective effect. It helps with symptoms for some, too. The other one was Neupro, a skin patch you change every 24 hours. Neupro is a dopamine agonist. I was started on 2 mg and they said I could gradually go up to 4 mg if 2 was not enough. I called my new friend Silvia for advice. She had recently weaned herself off Neupro because of nasty side effects. She had specifically warned me that they were going to offer me this and that I should turn it down. But the robot wouldn't listen. He looked me in the eye and said: "you are missing a chemical in your brain. You need to replace it. Simple as that. Take it, and I'll see you in 3 months. You'll be a "new lady"." Silvia tried consoling me saying that side effects probably would not come immediately, that 2 mg was a low dose and that it would be ok. But she also talked about how hard it had been for her to come off them. I was desperate for symptom relief. I was willing to give it a try, but it felt like a huge step.

I started Azilect the day after the diagnosis and waited anxiously as I had swallowed my first pill, for the nausea I had been warned about. Luckily, I didn't get that. After a week I had finally built up the courage to put on my first skin patch. It did not take long before I felt relief. What an amazing feeling. My arm started working. I was so encouraged. Everything changed at that moment. I didn't feel any side effects at all. I felt as if I got my life back.

I will be sharing a more detailed overview of my medication journey in a separate post. One of the first things I was told by others with Parkinson's is that it can take quite a while with trial and error to find your right mix of meds and that this is different for everyone. Unfortunately, the relief I got did not last long, and I have been through several changes in doses, timing, and different meds since then. But at least they were working. And I was ready to go to work. And the gym...

I immediately told my PT, Jules, about the diagnosis. I had only recently started working out, and now I was more determined than ever. He didn't treat me any differently. And with the meds I was now able to move better, and within only a few sessions we had fixed my painful frozen shoulder that was a result of not using my left arm for longer than I thought at that time.

In the beginning, I only told a few people. My brother, sister-in-law, and my parents, my mother-in-law, my closest friends. And my boss. I decided it was the right thing to do. After all, when working as a personal assistant you get pretty close and he was already being very open with me. But we didn't know each other very well, and I had no idea what his reaction would be. The first chance I got, when no one else was around, I said I had something difficult to share. I think for a few seconds he thought I was going to say I was pregnant. He listened carefully as I explained, and took a moment to reflect before he said: "Oh, Parkinson's... there's a lot of research happening there. I am sure it will be fine. How does it affect you?" I mentioned my arm not functioning and that typing sometimes could be difficult. "Well, if you have trouble typing you can get one of those dictating devices. All I need is your head". And that was it. Such a relief. I told him not to tell anyone, as I had decided not to share it at work yet, after all, the meds had made me feel so much better, I realized I would be able to hide my symptoms for a while.

And this was the beginning of my new life.

"It may be hard to believe, but it's the catastrophe that offers. the most promise for an even richer life. This is the gateway to the good stuff. In other words, you never truly know which way the wind is blowing until the shit hits the fan." -Michael J. Fox