Frequently Asked Questions
"THE AMOUNT OF INFORMATION ON THE WEBSITE IS OVERWHELMING. wHERE DO i BEGIN?"
I recommend that anyone affected by Parkinson's Disease, or is involved in healthcare of people with PD, read the following books to arm themselves with the most up-to-date practical and pragmatic knowledge:
- The Pocket Guide to Polyvagal Theory: The Transformative Power of Feeling Safe by Dr Stephen Porges (start at chapter 2 and then come back to the start at the end);
- The Brains Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Dr Norman Doidges;
- Limitless: How Your Movements Can Heal Your Brain by Dr Joaquin Farias, available as PDF download from his website;
- When the Body Says No: The Cost of Hidden Stress by Dr Gabor Mate (this one can be a very uncomfortable read);
- Healing Developmental Trauma: How Early Trauma Affects Self-Regulation, Self-Image, and the Capacity for Relationship, by Dr Laurence Heller and Dr Aline LaPierre.
i also recommended following the Healthy Nervous System Revolution work of Irene Lyon online.
Since the symptoms of stress and Parkinson's Disease overlap so strongly, and stress is one of the most significant negative influences on disease progression, I recommend trying to remove or minimize known stressors from the lives of people with PD, and for people with PD themselves considering dropping as many of their responsibilities as possible. Practising mindfulness, meditation, relaxation, and de-stressing techniques as often as possible can be of significant benefit.
I recommend anyone with Parkinson's Disease start long term elimination trials as soon as possible to seek out potential food allergies and intolerances. Very many of us have found that whether or not we come into contact with our personal problem foods makes all the difference in terms of physical pain and mental anguish, and also in the effectiveness of our prescribed PD medications. Without identifying and eliminating allergens or food sensitivities, it is very hard to progressively reduce symptoms. I do not and cannot recommend any particular diet or supplement plan, because everyones biochemistry is disrupted and dysregulated through PD in very different ways. Even supplements which are highly beneficial for most can be toxic for a small percentage of others. However, I do recommend the diet and supplement findings of Dr Laurie Mischley, as to which are the most beneficial for the "average" person with PD, as the best starting point.
The same recommendations as to food sensitivities follows through with environmental chemicals too. The choices of soap, shampoo, cosmetics, household cleaning products, garden chemicals, perfumes, etc. can make or break symptom reduction. Watch out for black mould in the environment. Some may be allergic/sensitive to chemicals in their clothing, such as latex, dyes etc.
I recommend starting regular movement therapies as soon as possible. I am recommending Smovey Rings as the essential home exercise tool for Parkinson's Disease (they were invented by a man with PD). However, I do not recommend sourcing these from third parties (such as amazon), as without PD specific support, exercises and training plans, they are unlikely to be beneficial. I therefore suggest sourcing
them through a reputable PD focussed retailer. I particularly recommend contacting Irene Treacy of Smovey Health.
I recommend trialling light therapy to see if this helps with sleep issues. I suggest starting with a standard bright light lamp for Seasonally Affected Disorder (SAD) and follow the manufacturers instructions for a few weeks. Beurer seems to have a good range of relatively inexpensive SAD lamps. If it is the case that using one of these consistently is found to be helpful with sleep and/or mood, it may be worth investing in any of a myriad of wearable light therapy devices now on the market, and starting to experiment with different protocols of application timing.
"Can you provide your actual daily regime (DIET, EXERCISES, THERAPIES, ETC.)?"
What I am trying to do via the website is present a menu of suggested options, from which folks can experiment and choose the strategies which work best for them. We need to be mindful that there is no one size fits all solutions to any of this, every body is different and everyone is at a different stage. My own "regimen" changes all the time as my movement/health/capabilities comes back online, for example, so it is a not a static affair. I wouldn't be able to do what I can do today even a couple of month ago, in some cases, while things I found beneficial at the start and now of little impact. It is also important to undertake therapy in the spirit of curiosity, play and baby steps, not as regimented "drills", to go with the flow of symptoms and energy levels, and not try to "fight" it. So what I do varies markedly from day to day too. Therefore, I feel it would be detrimental to present any fixed regime, this would be the wrong message and set folks up for failure.