Basics and Some New Steps on the Path to a Cure

It's been a minute. Things have not gone as well as I had hoped, but I remain very optimistic. There have been some not-so-positive progression of some of the symptoms of the Parkinson's since I last posted. The fatigue has been much worse at times and some other non-motor symptoms of autonomic nervous system dysfunction have been very limiting, especially intermittent orthostatic hypotension (blood pressure falls/does not rise and pulse rate does not rise when going from lying to sitting to standing. These two problems are why I have not posted since the first post. It is very usual to have alternating worse and better times in this disease and in the process of treating it. It’s a bit like a sine wave with peaks and troughs.

I want to avoid taxing the reader with the details of the current state of knowledge about Parkinson’s, the causes, lists of signs and symptoms, and other information that most of you will have already reviewed. There are links to some of this information below which I hope you will find informative if you are unfamiliar with these details (1) (2) (3).  

However, I will write about specific treatments and my experience and opinions about these treatments.

Today is a better day, and I’m feeling more ambitious. So let’s get down to it. Since I first noted the signs and symptoms of Parkinson's in my body (2004), I have tried many things to alleviate these. Some of the first things were to add other modalities to my physical exercise/therapy regimen; using a punching bag and a speedbag (4), bicycling, and indoor treadmill walking in inclement and very hot weather. (5) (6)  I continued my efforts in hiking, daily hatha yoga, and some Hsin Tao and Qigong, mindfulness, and other forms of meditation (I have been a meditator since 1968). (7) (8) (9) I have found all of these things very useful in slowing the progression of the disease. I will say that if there is significant fatigue, pain, depression, anxiety, agoraphobia, apprehension, or fear, it is beneficial to attempt to perform these activities despite these debilitating symptoms. I have found that if I force the issue, then I will feel better later that day. Some days I can hardly make it around the block, but if I just do that, I can have a much better day afterward. After forcing the activity, it's very important to rest. Listen to the body, and it will tell you when to rest.

Another treatment that I have found useful over the years is acupuncture. I have intermittently had acupuncture and have had several acupuncturists. Tomorrow I have an appointment with a new acupuncturist, and this time it is specifically for the autonomic dysfunction, especially the neurogenic orthostatic hypotension. (10) 

I know many of you want to know about the trip to the British Virgin Islands, and the treatment that I started there, and have continued with since. I promise that will be the focus of the next blog entry. There’s a lot to cover, and I just wanted to lay some historical background before getting into that.

To access the referenced material, hold the cursor over the desired document title and click on it.

References

1.      The Parkinson’s You Don’t See: Cognitive and Non-motor Symptoms.

2.      What are the different stages of Parkinson's disease?

3.      Temperature Regulation, Sleep, Pain, and Urinary Urgency

4.      Moore A, Yee E, Willis BW, Prost EL, Gray AD, Mann JB. A Community-based Boxing Program is Associated with Improved Balance in Individuals with Parkinson's Disease. Int J Exerc Sci. 2021 Jun 1;14(3):876-884. PMID: 35096235; PMCID: PMC8758155.

5.      Tomlinson CL, Herd CP, Clarke CE, Meek C, Patel S, Stowe R, Deane KH, Shah L, Sackley CM, Wheatley K, Ives N. Physiotherapy for Parkinson's disease: a comparison of techniques. Cochrane Database Syst Rev. 2014 Jun 17;2014(6):CD002815. doi: 10.1002/14651858.CD002815.pub2. PMID: 24936965; PMCID: PMC7120367.

6.      Ernst M, Folkerts AK, Gollan R, Lieker E, Caro-Valenzuela J, Adams A, Cryns N, Monsef I, Dresen A, Roheger M, Eggers C, Skoetz N, Kalbe E. Physical exercise for people with Parkinson's disease: a systematic review and network meta-analysis. Cochrane Database Syst Rev. 2023 Jan 5;1(1):CD013856. doi: 10.1002/14651858.CD013856.pub2. Update in: Cochrane Database Syst Rev. 2024 Apr 08;4:CD013856. doi: 10.1002/14651858.CD013856.pub3. PMID: 36602886; PMCID: PMC9815433.

7.      Li Z, Wang T, Shen M, Song T, He J, Guo W, Wang Z, Zhuang J. Comparison of Wuqinxi Qigong with Stretching on Single- and Dual-Task Gait, Motor Symptoms and Quality of Life in Parkinson's Disease: A Preliminary Randomized Control Study. Int J Environ Res Public Health. 2022 Jun 30;19(13):8042. doi: 10.3390/ijerph19138042. PMID: 35805699; PMCID: PMC9265753.

8.      Li Z, Zhuang J, Jiang Y, Xiao G, Jie K, Wang T, Yin W, Zhang Y, Wang Z. Study protocol for a single-blind randomised controlled trial to evaluate the clinical effects of an Integrated Qigong exercise intervention on freezing of gait in Parkinson's disease. BMJ Open. 2019 Sep 12;9(9):e028869. doi: 10.1136/bmjopen-2018-028869. PMID: 31515419; PMCID: PMC6747653.

9.      Song R, Grabowska W, Park M, Osypiuk K, Vergara-Diaz GP, Bonato P, Hausdorff JM, Fox M, Sudarsky LR, Macklin E, Wayne PM. The impact of Tai Chi and Qigong mind-body exercises on motor and non-motor function and quality of life in Parkinson's disease: A systematic review and meta-analysis. Parkinsonism Relat Disord. 2017 Aug;41:3-13. doi: 10.1016/j.parkreldis.2017.05.019. Epub 2017 May 25. PMID: 28602515; PMCID: PMC5618798.

10. Gao X, Zhang J, Ma B, Liu L, Gao H. Acupuncture Treatment of Autonomic Nervous Dysfunction in Patients with Parkinson's Disease: A Narrative Review. Med Acupunct. 2024 Jun 21;36(3):146-154. doi: 10.1089/acu.2023.0076. PMID: 39309401; PMCID: PMC11413570.