Before I delve into the diverse range of topics I plan to write about, let me introduce myself.
I was diagnosed with a type of rigid Parkinson’s disease (PD) in my early 60s. It is an idiopathic form, and hard for others to see. I experience the symptoms of rigidity, inaccurate muscle aiming, and slowing of movement, along with some non-motor symptoms and quite a bit of pain.
I have a good response to Sinemet (carbidopa-levodopa), but still see a slow progression in my symptoms. I see the effects every day of my life. I have been on a journey to make sense of what is happening and to attain a high quality of life in the face of PD symptoms. This column will share my journey and the insights I’ve gained along the way.
I am also a researcher and writer (see: www.DrC.life).
After years of hearing, “You look fine, I don’t see the PD in you,” while having the worst of the symptoms under medication control, I thought it was time to put pen to paper. I have a unique background that combines clinical experience helping people with the ability to reframe things so that they may be viewed in a new light.
In this column, I will discuss new ideas and things you haven’t heard before. But mostly they will be ideas that are reframed. This is the result of my struggle to make meaning out of rigid Parkinson’s disease and what it is doing to my life. Hopefully, the information will help you to make sense of some experiences you might have in connection with PD.
The unique perspective that this column will bring to the topic of attaining quality of life with rigid Parkinson’s disease is one I believe will be of interest to the reader. I have a Ph.D. in rehabilitation counseling and I specialized in the treatment of cerebral-neurological disorders. I have helped people attain a higher quality of life after terrible things happened to their brains.
I am also a scientist, and during the past five years, I have conducted extensive research on the ideal rehabilitation plan for a person like me, with early signs of PD. I have put such a plan in place for my own life, although it’s not as perfect as I would like, and I am struggling with things like cutting back on ice cream.
I think that tackling the disease head-on with a vigorous rehabilitation plan makes as much of a difference in the quality of my life as medication does. (I’m not saying to replace the medication, but rather to enhance it.) My plan includes the following:
- Five to 10 hours of light and hard exercise per week.
- Fifteen to 20 hours of mental-stimulation activities per week.
- An ADA house (one that meets standards set by the Americans with Disabilities Act) close enough to receive support from family.
- Decreased stress, a healthy diet, and doing fun things.
Those are the basics of the plan, which is quite flexible. A lot of fine-tuning happens when the basic plan is applied specifically to the needs of a person, like you, the reader.
Any rehabilitation plan needs to consider where a person falls within the spectrum of Parkinson’s symptoms. In a treatise on PD by Stewart Factor and William Weiner, the authors speak to the importance of understanding the non-motor symptoms associated with PD and the necessity of early intervention.
“Dr. C’s Journey with PD” is personal, but it also will address these two points and various aspects of the PD spectrum. In each column, I will try to leave readers with something that might improve their quality of life with Parkinson’s.
Next week: Parkinson’s disease as a spectrum.
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.
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