Redefining My Honeymoon Phase as My ‘New Normal’

Redefining My Honeymoon Phase as My ‘New Normal’
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This December marked the fifth anniversary of my diagnosis with Parkinson’s disease. Technically, I am still in the honeymoon phase — the first three to eight years of the Parkinson’s journey. Life is still pretty normal. Then again, what is normal?

Normal now consists of inconvenient symptoms including tremors, low blood pressure, rigidity, and anxiety. Oh, and lots of medicine. Taking numerous medications daily was never normal but it is now part of my daily routine, along with exercise. Does my evolving normal mean my honeymoon phase is nearing its end? Maybe. Maybe not. I am choosing to redefine my honeymoon phase as my “new normal.” Life is good, but it’s also different. I have moved from newly diagnosed to patiently awaiting a cure.

‘New normal’ puts us in the Cure-for-Parkinson’s Waiting Room. What should we do?

Keep moving and don’t stop!

My goal is to keep others moving alongside me. It’s easy to get comfortable and coast along, but that won’t get the job done in fighting this disease. Staying consistent and living well with Parkinson’s isn’t easy. It’s especially hard to do it alone. One of the most important tactics in this fight is finding others who share the same journey. Parkinson’s warriors and our coaches look out for one another. Parkinson’s comes at us full force and head-on every day. Together, we push back.

You can educate yourself and participate in the search for a cure through clinical studies, especially early in your diagnosis. The Michael J. Fox Foundation’s Fox Trial Finder is a tool that helps match volunteers with available clinical studies. There are two main types of clinical studies — observational studies and clinical trials. Observational studies involve tracking and collecting data for a better understanding of Parkinson’s. Clinical trials test promising drugs and other therapies.

Although many studies are done in a clinical setting, others are not. One long-term research effort is the Fox Insight study. It is completed online and done from home. Some studies are enjoyable. For example, I participated in a study in which I took a series of guitar lessons over six weeks along with others who have Parkinson’s. Researchers examined the effect of the lessons on quality of life, upper motor function, mood, and cognition. Yes, it was fun and we all became friends. However, it was very challenging. More importantly, researchers received valuable data.

There is a study for everyone!

Ultimately, a cure will be found through us — the people facing the disease every day.

***

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.

Diagnosed with Young Onset Parkinson’s Disease at the age of 45 was devastating. After struggling with this life changing diagnosis, I decided to make a change. As a wife and mother of three boys, I needed to attack this. I started building my toolbox. I researched everything. One common thread was exercise. A doctor recommended dance lessons specifically, the Argentine Tango, so I started ballroom dance lessons with my husband and we still have a weekly dance lesson date. You can find me teaching and participating in classes from dancing to boxing. Parkinson’s takes things from you but it can also give you things you never expected. Your perspective changes. Five years ago, life gave me lemons but I’m choosing to make lemonade. It’s not quite perfect but it’s mine and with a little luck, it will get a little bit sweeter.
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Diagnosed with Young Onset Parkinson’s Disease at the age of 45 was devastating. After struggling with this life changing diagnosis, I decided to make a change. As a wife and mother of three boys, I needed to attack this. I started building my toolbox. I researched everything. One common thread was exercise. A doctor recommended dance lessons specifically, the Argentine Tango, so I started ballroom dance lessons with my husband and we still have a weekly dance lesson date. You can find me teaching and participating in classes from dancing to boxing. Parkinson’s takes things from you but it can also give you things you never expected. Your perspective changes. Five years ago, life gave me lemons but I’m choosing to make lemonade. It’s not quite perfect but it’s mine and with a little luck, it will get a little bit sweeter.
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2 comments

  1. Michael Byrne says:

    Hi Lori, I too was diagnosed at age 45 five years ago. It’s been quite a ride. If you’re interested in swapping notes, feel free to email me at [email protected]. Take care, Michael Byrne

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