Getting started with Parkinson’s treatment

After being diagnosed with Parkinson’s disease, it took me about six months to come to terms with the condition, and even longer to understand how to live with it. The truth is, there is no handbook for this. It is a very individual process, and finding your own way takes time.

After the diagnosis, I received a lot of information about the disease and what might lie ahead of me. However, at that point, I was still in shock and unable to absorb any information. The whole situation felt overwhelming. If I could give one piece of advice from that time, it would be to take someone with you to your appointments, whether it’s your partner, a friend, or a family member. Having someone there to listen and support you makes a big difference.

I started medication right after my diagnosis. My neurologist prescribed a combination of Sifrol and Levodopa, and later also Akineton. I began with very low doses of both Sifrol and Levodopa and didn’t experience any side effects at first. But Akineton, which was meant to reduce the shaking in my hand, wasn’t a good fit for me. It dropped my already low blood pressure so much that I started fainting. For me, this was a no-go. I didn’t want a medication that would require another medication just to manage the side effects. My solution was to simply put my hand in my pocket when it was shaking.

Later on, when my Sifrol dose was increased, I began to experience side effects, particularly impulsive behavior. I developed a bit of a shopping habit. I couldn’t walk out of a hardware store without buying something. Today, I own an impressive collection of tools and screws, more than I’ll ever need. Thankfully, when we reduced the dosage, the impulses faded, and I was once again able to leave the store empty-handed – a small but memorable victory.

Overall, medication helped me adapt to life with the disease and enabled me to continue working. Especially the mornings, when I was in an OFF-state, became much easier.

I was lucky to have a neurologist who patiently listened, answered my questions, and discussed different medication options. And reminded me, gently but firmly, to take my medication as prescribed. In the beginning, I thought I didn’t need as much medication as I was told. I did not realize, however, that my experiment had caused stiffness in my left arm, which she immediately pointed out during our next appointment. That conversation was enough to convince me to follow the medication plan more closely.

Finding the right combination of medication took about five years. One mistake I made early on was waiting too long to speak up when something didn’t feel right. I waited for my next scheduled appointment, even if it was months away. Looking back, I’d recommend agreeing with your neurologist on an earlier check-in after any medication changes. It really helps fine-tune things more quickly.

Alongside medication, my neurologist encouraged me to exercise regularly, and later I received referrals for physiotherapy and nutrition counselling – all of which turned out to be valuable.

But more on that in my next blog,
Riaz

Riaz Zabihian

Riaz is Adamant Health's patient voice. He has been living with Parkinson’s disease for over a decade. In his blog, Riaz will share his personal experience of life with Parkinson's disease to provide support, inspiration, and practical advice for others affected by the condition.