When I started writing this column, I was having a pity party and was in a bad place. Wanting to reflect positivity, I decided to stop writing until I had a better frame of mind.
Why was I feeling sorry for myself?
More than four years have passed since my Parkinson’s diagnosis. I didn’t realize how good I had it then. I remember that previously, my deteriorating symptoms would cause me to tell myself that if it didn’t get worse, I could handle it. Recently, however, it seems that many of my symptoms, especially the non-motor ones, are worsening.
My balance is worsening such that I feel unsteady when walking in narrow areas with crowds. I frequently cough and choke on my food. I gag when I take pills and supplements. People ask me to repeat myself more often. It seems as though I am slurring my speech. Anxiety frequently visits me, something I never experienced prior to my diagnosis.
I can’t seem to find the right combination of medications, despite working on that for almost two years. Much trial and error have followed, as I test whether it’s better to take my medications before or after a meal, and change or add new medicines. I must be weaned off some drugs, while others must be increased for six to eight weeks to test therapeutic benefit. Another person with Parkinson’s coined the term “tweaking and seeking” to describe this lengthy and frustrating process.
Based on my experiences and what I have heard from others with Parkinson’s, it seems as though we must choose our poison. For example, do I prefer dyskinesia induced by carbidopa-levodopa or bradykinesia, the main symptom for which I take that medication?
About that Parkinson’s honeymoon
A friend mentioned to me that he is considering deep brain stimulation surgery because he feels that his Parkinson’s honeymoon is over. I had never heard the term “honeymoon” related to Parkinson’s, so I did some Googling, wondering if my honeymoon period was also coming to a close.
In general, the first stage of the disease is a honeymoon period that lasts up to eight years, during which patients can live what’s practically a normal life, according to Parkinson Québec. It also is the stage during which treatment is most noticeably effective.
When I started to write about the honeymoon ending for me, I realized that kind of negative thinking wouldn’t help me. Leaving this column unfinished for a few weeks was a good decision. I have come back to it refreshed and with that bad place behind me.
Although my symptoms may be worsening and new ones may be appearing, I refuse to go down without a fight. Speech therapy and an assessment by a therapist certified by Parkinson Wellness Recovery are on my list of next steps. Medical marijuana, which is legal in New York for Parkinson’s patients, is something I also am considering.
It’s therapeutic to have a plan with a course of action, and I now have a renewed sense of hope. My Parkinson’s second honeymoon is just beginning!
“Never give up, for that is just the place and time that the tide will turn.” ―Harriet Beecher Stowe
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.