My Medicine Cabinet
For the first 5 years after my diagnosis I didn’t take any Parkinson’s meds. My symptoms were manageable and I was still trying to conceive. I did however get serious about alternative therapy. I went to acupuncture, physical therapy and followed my functional GP’s advice on supplements. My first symptoms were tremor, anxiety attacks and a frozen shoulder. The tremor, which was probably not noticeable to anyone but me, was easy to conceal in my pocket or behind my back and my shoulder finally relaxed after deep pressure work with a physical therapist. Three years after I was diagnosed I had another baby girl, Charlotte. I still didn’t feel ready for meds and my doctor did not push me at all. I spent the next six months nursing and another few months pumping. Having a baby did not speed up my progression although some medical advisors thought it might. Almost 5 years to the day of my first DAT scan I started Carbidopa Levodopa. I was immediately nauseated and dizzy. My doctor said my body would get use to it in time but I wasn’t willing to try. I had hyperemesis gravidarum during both my pregnancies and couldn’t live like that. I switched doctors and my current doctor suggested I try a drug that was not marketed in the US for various reasons so I would need to order from a specialty pharmacy in Canada. This little white pill that has saved my stomach for the past 4 years is called Domperidone. Over the years Dr. Bressman has added in Rasagaline for Dopamine stimulation and Carb Levo Extended Release so that the wear off isn’t as extreme. I have been tolerating this combo on drugs for the past few years however, they come with some side effects. Dyskinesia or involuntary muscle movements is one of the side effects from Carb Levo and can be pretty intense at times. It is a very odd feeling and can be even more embarrassing than a tremor or imbalance. Just last week my arm went right into a plate of eggs benedict that a waiter was carrying. After some trial and error with dosing I am now on Gocoveri twice a day which has really helped! I see my movement disorder specialist every three months and we always tweak things a bit based on my ups and downs but for the most part I’ve been doing well on this regime. It takes time but I’m grateful for the knowledge of my specialists and the miracle of science.
