A letter to my neurologist on my life with Parkinson’s disease this year

To my neurologist:

In an article published on KevinMD.com, the authors of a study on the experience of Parkinson’s care partners suggest that asking a patient or care partner to write a letter – instead of relying solely on verbal conversation – sheds light on new aspects of the doctor-patient-family relationship. I believe it is.

In his book “The wounded storyteller“, sociology professor Arthur W. Frank identifies three basic narratives describing illness in writing: restitution, chaos and quest. Stories of restitution anticipate healing and highlight the technology of healing. In stories out of chaos, the disease seems to spread forever, without respite or redemptive ideas.

Quest stories are all about uncovering this intuition as the illness evolves into a way for the sick person to become a new person. They then use this experience to reduce the suffering of others.

I think of my writings, and this letter, as adhering to the definition of quest. My quest is to live better with Parkinson’s disease.

I’m using a new set of Parkinson’s self-management tools that I call TBM, my acronym for Threshold Management, Brain Rewiring, and Conscious Movement. TBM is relearning to think and act, and is making those changes every moment. TBM requires changing the way I think and live with Parkinson’s disease, and with the change new possibilities are being discovered.

TBM offers me the opportunity to slow the progression of my disease. It offers the possibility of a better life for me and my partner. The old ways of looking at Parkinson’s just didn’t help me in my quest.

Daily practice of TBM has helped reduce the intensity and frequency of the worst times with Parkinson’s disease – those horrible days. I don’t know if the intensity of the difficult symptoms has decreased or if I am handling them better. I’m not trying to paint a too rosy picture here. TBM is hard work. It is not a cure and it does not treat all aspects of Parkinson’s disease.

Here is my end-of-year report:

Using TBM, pain dropped to number three of the concerns on my list, after profound fatigue and what I call “flicker effect” symptoms. “Flickering” is a symptom that is not constant but occurs more often.

Threshold crossing events (emotional lability) associated with ugly days have decreased, except for unforeseen external events that arise from time to time. But it is “two steps forward, one step back” because of the progression of the disease.

Aspiration is becoming more of a problem and is now at the top of my list of things to do to relearn. TBM helps.

My motor aiming difficulty increased. For example, when I carry food on a spoon in my mouth or take a cup to drink. (All of my mugs have airtight lids to prevent spills.) Again, TBM helps.

There is no feeling of “thirst”. We have tried several arrangements, the most recent being a cord timer which we can set for 20 minutes. It vibrates and reminds me to hydrate – when I remember to wear it.

I have noticed an increase in dizziness and lightheadedness. No more trips and foot drag, banging against walls or using walls for support. There is also an increase in akathisia. These problems are related to the flicker effect, and TBM helps.

Ms. Dr. C works hard to keep my schedule under control, limiting the number of trips in a day, the number of places to go and people to see. She tries to keep me in a manageable routine. Stress is a major factor in managing symptoms and how well I am each day.

I find that I can garden 10 hours a week, no more than 90 minutes a day, when the weather permits. My exercise involves conscious movement focused on the strength of the body.

I can no longer do the type of physical activity I used to do and have had to relearn how to exercise, both mentally and physically. Before using the TBM techniques, I could only do 30 minutes of physical activity per day. I couldn’t even sit up for a long drive because of the overwhelming fatigue. TBM has helped, and Ms. Dr. C appreciates the business. Even with these adjustments to my exercise program, I still need time between exercise days to rest – lots of rest!

This letter is my way of sharing my Parkinson’s life with my doctor. You have always treated me with respect and compassion. For this I am eternally grateful.

So this is my quest: to discover as many possibilities and hope as possible in living with Parkinson’s disease, and to share the possibilities with others.

Wishing you and yours, readers of The news of Parkinson’s disease today, and the folks at the site’s parent company, BioNews, have a very happy holiday season. See you in 2022!

Dr C

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To note: The news of Parkinson’s disease today is strictly a disease news and information site. It does not provide medical advice, diagnosis or processing. This content is not intended to be a substitute for professional medical advice, diagnosis, or processing. Always seek the advice of your doctor or other qualified healthcare professional with any questions you may have regarding a health problem. Never disregard professional medical advice or be slow to seek it because of something you have read on this website. The opinions expressed in this column are not those of The news of Parkinson’s disease today or its parent company, BioNews, and aim to spark discussion on issues relating to Parkinson’s disease.